John West’s "semi-private" Webpage to help similar sufferers — Updated 14 May 2007 by Tamsyn West
In loving memory of John McCallum West
14th May 2006
The following is a story of my father’s journey which unfortunately came to a sudden and shocking end on Sunday 14th May 2006.
The family and I think that my Dad would have wanted us to keep this website active so that others can continue to benefit from his experiences and obstacles overcome throughout his journey with Ulcerative Colitis and Colorectal Cancer.
We also feel that it is important to warn others of the seriousness and symptoms of Septicaemia which my Dad contracted and later died from on the 14th May 2006.
I hope my Dad’s story continues to give hope.
Tamsyn West (John’s daughter).
MY EXPERIENCE OF ULCERATIVE COLITIS FROM START TO RECOVERY
plus HINTS AND TIPS ON MANAGING AN ILEOSTOMY (and beating colorectal cancer)
WARNING — readers may take offence at the gruesome nature of
some of the text and pictures
(though it is for personal medical reasons only)
the password to the pictures can be obtained by emailing email@example.com or firstname.lastname@example.org
Click on the picture to see my personal details
I want my story to give hope to those who are contemplating stoma surgery. As you read, it might seem sad, but I want to emphasise how important it is to manage your own health and to believe that there is a solution. Who would have believed that removing my colon would be such a godsend — despite the stoma.
My experience is provided for information purposes only and should not be considered medical advice. Always check with your personal physician when you have a question about your health.
Apart from my wife and children I have not shared my experience and I thought that there are many who would like some first-hand knowledge. My objective is to expose this taboo subject and give Ulcerative Colitis (UC) sufferers some objective evidence on which to plan their future. Unless the doctor/consultant/stoma nurse has had a stoma himself or herself they don’t really know what it is like. But I have the highest regard for the medical profession and I owe them my life. I thoroughly recommend a stoma if life has got as bad as mine had. It is hard to decide to go ahead with the surgery before your suffering has got intolerable. All I would say is, do not leave it too late. I almost did because I tried to fight it too long. If you cannot conceal the problem from friends then I think it is probably time for surgery. Like any major surgery though you have to accept that there is a small risk of death. You must satisfy yourself that this risk is worth taking. In my opinion the doctors will let you go on as long as you don't complain too much. And just to reemphasise the point, I elected to undergo even more invasive and risky surgery 10 years later (in 2005) to remove the residual rectum and anus as they showed precancerous cell development. And I should never have waited so long because a tumour was discovered in the rectum removed (see an ongoing log at the end of this page for my thoughts and progress on the journey with cancer).
Before World War II, people who had Ulcerative Colitis (UC) badly enough died, probably of peritonitis when their colon perforated, causing the bowel to spill into the abdominal cavity. Surgeons refused to operate because the exteriorised bowel became inflamed, contracted and eventually obstructed. The problems were inadequate surgical technique in joining the ileum to the stomach wall and primitive appliances failing to adequately seal the collecting device to the body. Collecting devices were useless and most people were allowed to perforate. The few who were operated on lived solitary lives (because of the odour) while many died, unable to cope with the complications in the area of the stoma. After the war, a new surgical technique was developed by Professor Bryan Brookes MD MChir FRCS Hon FRACS — an everted stoma (spout). By turning the ileum inside out, the inner mucosa surface was then the surface in contact with the effluent, and this method was so successful it was eventually used worldwide and is referred to as the "Brooke Eversion Technique". This new technique and rapid advances in materials technology, invariably saved peoples lives and undoubtedly gave sufferers an opportunity of a new life from the 1960s. For my Brooke ileostomy and the "simple" bag that I use are marvels of modern technology and they are fundamental to my quality of life. I will describe how I apply this technology in the management of my ileostomy and thus sustain a normal life. I am fortunate that my illness was totally cured by the removal of the colon; others are plagued by complications of Crohns, adhesions, fistulas, prolapse, hernia and other problems but I regret that my techniques will not be sufficient for them.
Some of the things I will describe might seem unpleasant to have to do on a daily basis, but with a positive mental attitude they become second nature. It is interesting to consider that my life expectancy has probably been increased by the removal of the colon (and later the rectum — hopefully removed in time), the second biggest cause of cancer death in men. It is also interesting to consider that there are currently more than a million people with stomas on this earth, that might otherwise be dead. I was astonished to learn in 2001 that my second aunt whom I'd never met, led a difficult life and died of UC in 1986 because she refused to be operated on.
Suffering With Ulcerative Colitis
My UC started when I was 36 years old in 1986 with a sharp bout of diahorrea and extreme anal discomfort that lasted a few days. This coincided with the start of a new job, but I am pretty sure that the apprehension/stress of the new job was not the cause of the UC. It may have been associated with a dental problem that required a course of anti-biotics, for I had a number of inexplicable problems following that. At the time, and until many years later I was not to know that what I had was UC. Following referral by my doctor the Consultant prescribed Asacol, which completely cleared up the problem within 3 weeks and ended 5 months of discomfort. With the knowledge I now have about UC I am surprised the Consultant did not diagnose UC — instead I was told that the cause was probably an anal fissure that supposedly healed. But aren’t we all wise with hindsight — I sympathise with the diagnostic difficulties the medical profession have to deal with.
The problem returned 6 years later in 1992 with almost identical symptoms and circumstances as I started my next job. Again the inflammation was quickly brought under control with Asacol. I had to continue to take 6 per day to keep the problem at bay for over a year during which life was very tolerable. After each blood test I would receive a letter from the consultant physician advising me to take iron pills to replace the iron being lost in my toilet.
During 1993, suddenly the worst symptoms of blood, mucous and frequent calls
to the toilet returned. By now my Consultant was sure that I had irritable
bowel disease (IBD). Over a period of 6 months the inflammation worsened to the
point where I was visiting the toilet every hour and in continuous discomfort
and uncertainty. Eventually warning of the need to visit the toilet became
unpredictable. There followed a period of a couple of months when my movements
(between places) were increasingly dominated by the location and proximity of
toilets. The next 3 months until my operation were the most frightening of my
life. I could hardly get to work — a journey of 20 minutes walk followed by 50
minutes train journey then 15 minutes walk in
Finally my Consultant prescribed Prednesilone that did not improve matters. The Prednesilone may have made matters worse since my appetite deteriorated sharply. Inside 2 weeks I was unable to swallow food owing to scarring of my oesophagus and acute indigestion, both of which I am convinced were caused by the Prednesilone tablets. I was becoming desperate and quite depressed, as I knew that I was dying. It was mid-summer and I was in such a bad state that I couldn't go on holiday with the rest of the family. They were probably pleased to get away from me for a week. I did a lot of thinking and praying that week. I couldn't sleep for more than 30 minutes at a time because I was continually breaking wind by sitting up, and going to the loo. I spent all day and night resting and trying to eat and sleep. I should have been in hospital. My weight was reducing at a rate of 1 Kilogram per week mainly due to my inability to swallow and I knew that something drastic would need to be done. I shall never know whether it was the Prednesilone or simply a deteriorating colon that caused my plight. Unable to wait for my next appointment with my Consultant I arranged an emergency consultation and was immediately admitted to hospital. Once in hospital I felt great relief and confidence that the British National Health Service would sort me out.
After admission, within hours I had been sent to have my oesophagus inspected. This was because my most immediate problem was that I couldn't swallow. Dr Skipper took one look at me and asked me to describe the problem. When I was finished describing my condition, he said examining my oesophagus wasn’t the first priority, and he sent me straight to X-ray my gut, but not before saying "I could give you a neat solution to this problem". This was the first time any of the medical profession had given me any hope of a solution. He gently introduced the idea of a stoma with every sympathy and reassurance. I wasn't going to waste his time and my response was, "Lets get on with it". I felt a load had been lifted from my shoulder. I was X-rayed and fed intravenously for 3 days without any improvement and the doctors were becoming increasingly concerned that my enlarged colon would perforate and empty into the abdomen which could be fatal. My legs were quickly swelling. With a Bank Holiday weekend looming when routine surgery is suspended and obviously not wishing to risk delay, the Consultants were clearly preparing me for surgery which took place on Saturday evening. I had introduced the subject of surgery to my wife in the previous few weeks. By now I was sure that surgery was my only solution to the UC and I did not need any persuasion. With hindsight I would have appreciated a little more practical information about a stoma before the operation. By the time they had decided to operate there was not sufficient time to involve the hospital stoma care nurse that would have been preferable. I didn't even know that such specialist nurses existed. However I cannot speak too highly of the care and consideration given to me by the doctors and nurses in preparation for the operation.
On reflection, when I was searching the WWW in 1994 there was next to nothing on this subject. I am sure there was much in print but public libraries had little information. Now, this is one of thousands of pages that I am pleased to contribute to. Since its inception in 1999 this webpage has been visited on average 7 times every day, so there must be a lot of people out there with related symptoms and I wish you all a quick recovery. Many have sought my advice and I am only too pleased to support anyone that has a question.
There turned out to be some difficulty matching my blood for transfusion before the operation. That was because my blood contained some unusual component. They were delaying the operation for the lack of suitable blood. The uncertainty of finding suitable blood worried me more than the operation or the resultant stoma. When eventually some blood was selected there wasn’t sufficient time to fully transfuse it into me in the 3 hours that remained before the operation. In retrospect, this was probably the normal procedure, but I would have preferred reassurance that they'd found the right blood. I was very apprehensive about any adverse reaction that might occur whilst undergoing surgery.
Recovering from surgery (and UC)
My first recollection back in the ward following surgery, was of my extreme helplessness. I shall never forget how grateful I was for the care given to me by the nurses during the12 hours following the operation before I was in control of my actions again. This seems quite a short time, and it is. I was actually conscious of what was going on and could hear and speak during this recovery period but I had no control over my actions.
I do not remember having any inclination to examine my new stoma. I was primarily pleased to be alive; I could see nothing but improvement ahead and I was longing to start eating. I had not eaten anything substantial now for some 3 weeks. At this time I had still had no detailed explanation, nor read any literature, nor seen any pictures of a stoma or its management. Further I was confused as to precisely what part of my gut had been removed and what remained. A major cause of the confusion was the after-effect on my brain of the anaesthetic that lasted for some 36 hours during which time I found it hard to figure out what exactly had been done to me. I remember how I wanted to talk all the time during this spell and I got delusions, particularly during the night, and one particular fear I remember, was that they hadn't finished the operation and that they would be coming back any minute to take me back to the operating theatre. It took some persistence on my part and attentive listening to the Consultant/doctors/nurses to fully understand what had been done to me. I fear that for those people who do not fully understand or research these subjects they might never actually understand precisely what they suffered from or had done to them.
If you look carefully at my pictures on my webpage you will see a vertical scar about 12 inches long from above my belly button to the bottom of my belly. It healed as a good straight join and is barely visible. You may have heard it said that the stomach and intestines are the body's second heart. I think that's because there is a massive blood and vascular system supplying it. This is, I think, the main task the surgeon has - to terminate all the blood vessels that he disconnects. Though I subsequently learned that removal of the colon and formation of the stoma in 1994 was more straightforward (1.5 hour operation) than the later removal of the rectum (2.5 hour operation) in 2005.
My hopes were somewhat dashed within 24 hours by my one and only real leak (since 1994 until now) due to lifting of the bag flange across a crease on my "shrunken" belly. To compound the problem and my concern, none of the nurses really seemed to know or want to know how to deal with a stoma bag leak. Being a Sunday, no stoma care nurse was on duty nor was one to appear until following the Bank Holiday Monday. We made do with sticky tape and I had to put up with this situation including an odour until Wednesday. A concern at this time was the immense swelling of my legs from the knee down and I was slightly disturbed by the splits that could be seen in my flesh under the transparent skin on my shins.
My first real view of the stoma spout came with the removal of the first bag on Wednesday. I shall never forget my reaction of shock and horror, particularly at the apparent massive size of the spout. Though it does contract with peristalsis (muscular contractions). The stoma nurse’s expression of surprise didn’t help either. She sensed my shock and unease and quickly reassured me that it was a perfectly normal looking spout if only a trifle swollen and it would soon shrink to a more attractive size. It is actually like a small tongue, only more moist as it secretes clear mucous. And thinking like this is one way to overcome the revulsion. Another ruse is to imagine it's a baby's bottom and that's not dirty. Unlike the tongue there is no feeling in the spout so you must be careful not to hurt it or scald it, though it seems to be almost as tough as the tongue but if mishandled it bleeds in minute shows which quickly stop. I discovered in 2004 that hot water, just unbearable to immerse hands in, hurt my spout. It hurt mildly on application and two days later I was scared by what I thought was the return of UC all over the spout. Then after some thought I remembered the hot water episode. But the blistering healed up within another two days.
The first few days were an extremely emotional time as I kept thinking about it and I had fleeting doubts about it all, but I quickly got back on my feet and started to recover from the immediate effects of the anaesthetic. Subsequent bags stayed faithfully secure and my resolve hardened to conquer this problem and get back to normal. During this initial period I was awaiting the results of the laboratory examination of my removed colon to diagnose whether the disease was UC or Crohns. It took a number of reminders to the Consultant before he remembered to debrief me on the histology result. I eventually established that the examination of my colon had revealed UC as opposed to Crohns Disease. It is easy to forget that the result of the lab analysis is important and I am a strong believer in managing my own destiny, when mistakes have been known to happen. This is not a criticism of the medical profession or the NHS — it is simply a fact of life and I do not want to be the subject of human failure.
If your consultant recommends surgery — accept the advice and make sure that the surgeon who does the operation has a good track record and knows what he is doing. It is important to get a well constructed stoma — I had a total colectomy in 1994 and that means removal of the colon/caecum and the ileum comes out of the stomach wall. I recommend a longish stoma spout to ensure it hangs down to discharge away from your skin. Before the operation I did not have any influence on the position of my stoma, nor had I seen a stoma bag. I was fortunate that the surgeon not only knew the best construction technique but also the best position to place it. The spout is about 2.5 inches long when relaxed (90% of time) and 1 inch long when the muscles contract. The latter starts almost spontaneously when food is first swallowed at a new meal. The spout is neatly joined to my skin and was clearly carefully constructed to ensure that it emerges at the correct angle to ensure that it takes a natural position hanging down when standing. I mentioned earlier the problem I had with a leak immediately after the operation due to a crease in my skin across the flange. That crease disappeared when I had put on some weight. So my nice round tummy ensures that I now have a good convex area for sticking the bag flange/wafer on. The Coloplast Assura single-piece bag flange moulds marvellously to the spherical surface. If you get the opportunity in advance of the operation, discuss with the surgeon the best location for the stoma and try sticking a bag containing water for a few days.
I have been struck by the apparent wide range of spouts created by surgeons, though my evidence for this is anecdotal and gleaned from newsgroup postings. I would appear to be one of the fortunate ones, and while it might look hideous, my long spout is functionally efficient at directing the effluent into the bottom of the bag where I make sure it stays. I have never seen an article in the various stoma journals, dealing with the subject of spout construction (diameter, length and angle of entry to the body). I wonder if ileostomists throughout the world might provide the feedback that could create a "Gold Standard" for the surgeons to achieve. Maybe they have one already. Perhaps any surgeon reading this could let me know. I would be pleased to receive any views and if sufficient I could perhaps publish a paper that might improve matters for future sufferers. Contributors could describe their spouts relative to my pictures, and related problems managing it.
Two days into my recovery, a young man who was clearly very ill arrived in the next bedspace. I shortly learned that his problem was UC. He seemed to be suffering exactly as I had been and I could see the inevitability of his ileostomy. Being in as close proximity as I was to him I was aware of his progress and could not help overhear his Consultant’s views and I was fascinated to hear his prognosis develop. Despite spending 4 weeks in adjacent beds (3 of those weeks we both had identical stomas) we never viewed each other's stoma nor discussed the mechanics of looking after it. I guess this was because of the extremely personal nature of the subject. We have kept in touch and he had a successful "pull-through", i.e. construction of an internal pouch, a few years ago.
By the end of the first week in hospital I was preparing myself to leave when I had a setback. My temperature rose a fraction of a degree above normal and I knew that there was something wrong. This was confirmed by extreme pain in the "stump" that by now I had learned remained of my rectum. I was pleased to learn that the stump remained to be reconnected at a later date if all went well. The raised temperature persisted for a further 4 weeks during which I was only too pleased to remain in hospital; my bed was my home and at times I simply didn’t want visitors. During this period the doctors closely monitored me; various scans and investigations were carried out but none revealed anything worth pursuing. I was assured that an infection in the rectal stump was not uncommon and that in time it would correct itself. I had two targets to aim for discharge from the hospital. At the end of 5 weeks (after a misunderstanding between Consultant and nursing staff) I had an unfortunate battle with the hospital authorities to achieve 6 hours discharge to attend my daughter’s final performance in the local theatrical production. I was so pleased to get back to hospital 6 hours later and this proved to me how right the nurses were and just how important an indicator the body temperature is of one’s general wellbeing.
My next major objective was to attend a trade fair in connection with my job 3 days after my daughter’s theatrical production. As if by a miracle, 24 hours before the event my temperature dropped to the expected norm and I immediately felt so much better. The doctors accepted the drop in temperature as enough evidence to discharge me, and I have never looked back.
My faith in God had always been firm. But you can imagine my consternation on the Sunday morning following the operation when the ward sister asked me if I would like a blessing from the hospital chaplain!! A few years later I was ashamed to think that I declined. I could put it down to the anaesthetic but I know that at the time, I didn't want to appear a coward. But reflecting in 2002 after further spiritual development, I think I was showing my own contribution/control of my recovery. Religious leaders are indispensable during normal times, to keep us all going. Despite my respect, I did not really think the chaplain could help me. At moments of crisis, I think we have to rely on our own reserves of faith and desire to live. But there are some things in life that we cannot resolve without God, and I think my faith helped me. Over the next 4 weeks, as one of a handful of people, I got to know that visiting chaplain at the Sunday service. I found great comfort in visiting the hospital chapel daily during my hospitalisation. I am so disappointed at the lack of religious/spiritual interest amongst so many suffering people.
Despite my raised temperature and rectal pain, throughout this period I quickly regained my ability to swallow and my capacity for devouring food regained its previous level. Food had not tasted so good for so long and slowly my weight increased though not as fast as I expected, considering my consumption. Before the terminal bout of UC my weight had averaged 10 stones and my trouser waist had been 32 inches for a number of years. Immediately following the operation the figures were 8 stones and 30 inches. In the 2 years following the operation the figures steadily increased and stabilised at 11 stones and 38 inches!
Learning to cope with an ileostomy
My first outing with the family the following Saturday ended in disaster. Disaster that is for me as it seemed at the time; for to leave my one and only plastic bottle used for washing my bag out in a disabled loo, and to return to find it gone, really upset me. My upset was made worse by our inability to find the same design of bottle anywhere on visiting a succession of chemists. It now seems so silly, but at that time my experience of bag cleaning was limited and I had much to learn. I had become quite attached to the plastic bottle that I had used in the hospital and hadn’t seen anything else that would do the job so well. I have since left about 4 of these bottles in public toilets. I have found a chemist who stocks the bottle and I keep a stock of about 3 bottles.
I returned to work after a 7-week break with a positive mental attitude. I did not want any sympathy or special treatment. I was starting a new life and I did not want my colleagues to regard me as handicapped. Therefore I did not make an issue of my new state — instead I reassured everybody how fortunate I was and that I was in no way handicapped. An early challenge was to gain confidence that I did not indeed smell and I casually asked my colleague at that first meeting to let me know if I smelled. I have never again suggested that I might smell. With a stoma one is especially careful to ensure that other normal bodily hygiene is kept at a high standard. I am absolutely confident that no odour emanates from my bag — fortunately I produce almost zero flatus and hence have no need of venting my bag even during long distance air travel. Years later only my closest, immediate family/friends and people who stumble across this website know about it. Few know at work.
As mentioned earlier my plastic bottle figured prominently in my life. With experience and after losing a few bottles I learned that there are other almost as efficient cleaning methods such as using soaked toilet tissue. And if there is no clean water to hand, urine comes in handy to rinse the bag outlet — but be careful not to get urine repeatedly on bare skin without rinsing out. These alternative techniques take time to discover and a willingness to experiment.
The biggest problem in the first few weeks was managing my sleeping pattern. I found it unavoidable to waken in order to turn over in bed since it is necessary to turn via my back to avoid squashing and possibly bursting the bag. Thankfully the depth of my sleep is not disturbed by the conscious effort to turn correctly and this has become second nature to me. I have since learned that the particular bag I use stands up to the pressure of my full weight without breaking. We have so much to thank scientists and engineers for the technology involved in the construction of our bags not to mention the adhesives without which I shudder to think how our people managed in the early days of ostomy surgery. My first and only leak in bed did not reach the bedclothes and was proved to be the result of my nicking the bag during the prior flange hole cutting. After 4 years I have discovered a method of sleeping comfortably on either side without falling onto my back or stopping the blood circulation through my shoulder. The method involves placing a door draught excluder (3 feet long, 4" diameter filled with cotton wool) each side of me and tuck it into the small of the back on turning over.
After a few weeks back at work, with some apprehension I took my first airline flight. I had read in the magazines about the potential for flatus and bag expansion and other difficulties, none of which turned out to apply to me, perhaps owing to my stable flatus-free output. That means no gases come out in the bag, but this is only if I completely masticate my food before swallowing it. In addition to minimising gases this also minimises the risk of obstruction developing in the ileum or at the stoma if its outlet is constructed small. I have never experienced anything like an obstruction. The risk of dehydration of an ileostomist is supposed to be greater as the colon is not there to reabsorb water into the bloodstream. I must say that I have never experienced it even when I fail to drink enough for many hours. But as a rule I do drink a lot to ensure that my urine is kept diluted to avoid the knock-on effect of kidney stones — as I discovered to my cost in July 2003.
The pain was very uncomfortable. Stones were forming in each kidney, and another lodged in the tube to the bladder. The latter was very painful until I had an ureteroscopy where no incision is made; a small fiberoptic instrument called a ureteroscope is passed through the urethra and bladder into the ureter. The stone is located and either removed with a cage-like device or shattered with a pulsed laser. A small tube or stent may be left in the ureter for a few days after treatment to help the lining of the ureter heal. To minimise/predict future stones I must have an annual x-ray.
My first x-ray revealed a 3mm stone in my right kidney and a number of smaller stones in my left kidney. The latter should pass naturally, and I think I can now recognise the symptoms which are very mild. When a small stone passes down the ureter it sticks owing to its jagged profile and irritates the tube which gives mild twinges. Provided the stone gradually moves on over a few days, the only other symptom is a lack of appetite. It is remarkable how one learns to recognise what is going on inside the body. You can imagine how difficult it is for doctors to diagnose our problems.
The large stone in the right kidney was broken up by Shockwave Lithotripsy. I had to drink lots and take exercise to pass the bits of stone over the next few days. It was fascinating. I laid on my front and the arm with the gun was brought to bear on my back. A large bag of water acted as the interface to the back. The gun was zapped through the water bag about once per second and that was like a pin prick in the back. The next firing was on a different part of the back within a 6 inch diameter circle. Each zap was of course focussed on the stone which the operator had located between the cross-wires that I was watching on the display. It looked fuzzy to me and I hope it was the stone we destroyed at the end of about one hour. The maximum number of zaps in one treatment is 3000. But he was really pleased with my ability to control my breathing to keep the stone between the cross-hairs, and I had to believe him when he said that it was breaking up and eventually he was definite that it had been shattered into little bits after what must have been about 2000 zaps. I had a red circle on my back for 24 hours which wasn’t sore, nor did I feel any soreness inside, though I passed blood but only once on first urination after the procedure. The consultant reported the results of the analysis of my urine which was near normal.
The Consultant declared that the stones are almost certainly a consequence of losing my colon which normally reabsorbs elements back into the body. I am very happy with my situation. I now know the symptoms of a descending stone, and how to deal with it. My only real concern is how frequently this might happen. So far it is no problem. An annual x-ray will keep this under observation.
Another aspect of losing the colon is the potential need to increase salt intake to compensate for the loss of reabsorption of these chemicals by the colon. I have happily complied as I enjoy salt with my food but there is some contention that it is really advisable as it is detrimental to the heart and further it predisposes to kidney stone formation.
Lessons learned in coping with an ileostomy
An inevitable difficulty with UC and an ileostomy is the isolation. Before the operation only you know how bad it is — and the isolation is largely self-imposed, because there is little that anyone else can do to help except sympathise. After the operation nobody really wants to share in the care of the stoma — it's bad enough doing it yourself. So you have to become proficient, quickly. It helps a little if you have a confidant like I had in one of my daughters who would at least look at it to provide a second opinion.
I have found that I cannot tolerate a tight waistband since it eventually makes me aware of the stoma and a need to free it up to "rest". Thus I have adopted the permanent solution of wearing braces to keep my trousers up. Braces are regarded as eccentric and this leads to ribbing from friends and family but I treat it as a joke — indeed I encourage it by wearing the most outrageous matching braces and tie.
As a scientist/engineer I am fortunate to have had the education and training that were to make easier my learning how to manage the stoma. This may sound strange, but working on the likes of quality control for space equipment you learn the importance of process control, for instance to ensure sound flange sticking to stomach skin. Another obvious thing that many might not appreciate is the importance of chewing all food to a liquid consistency before swallowing. I designed and made a stoma bag support system (more later). Emptying and cleaning the bag can be achieved quite simply by adopting the correct procedure sitting on the loo. This is not to decry my fellow sufferers' ability and attempts to learn and I hope this story helps to pass on some of my skills.
After about 6 months I got up the courage to accompany my children bathing in the local public swimming pool. I learned the value of "picture framing" with medical tape to ensure the bag flange remains secure and also how to anchor the emptied bag to the body by enclosure in my briefs. Swimming is now a regular pastime. With care it is even possible to change in public without anyone being aware of the bag. Wiping the cloth backing of the bag with tissue paper results in only a few minutes being required for the remainder of the moisture to evaporate, enabling clothing to be put on without much delay.
During my first 9 months I attended most of the monthly social meetings arranged by the hospital stoma care nurses at the hospital on the last Friday morning of each month. These meetings were invaluable for me to gain confidence and learn of others' difficulties and triumphs. Further I felt that I was helping others in the same unfortunate position, to come to terms with it. I shall never forget a visit 3 days after my operation from a man (and his wife) that had had the same operation only 4 weeks earlier. And he looked and sounded a picture of health. It really motivated me. So much can be learned from others and the publications of the equipment manufacturers, the Ileostomy Association and NACC. To this day I have never by chance met anyone, including my GP, who knew much about stomas. The hospital stoma nurses provide an invaluable service. My first visit to a manufacturer’s Roadshow proved to be a real eyeopener. I saw the variety of appliances and clothing, and spoke to a wide variety of people with different stomas. My prescription supplier Fittleworth provide a marvellous discrete service including advice and equipment like curved scissors, mirror and toilet bag.
It took about 2 to 3 months to finalise on a one-piece transparent drainable Coloplast Assura appliance system and Simcare skin barrier cream combination that I used for 2 years, but I now no longer bother with any barrier cream. The only problem I’ve had was heat rash under the flange — this was solved by ensuring looser waistband/trousers so that the stoma surround did not get too hot/sweaty.
By 6 months after the operation my full strength had returned and I had learned most of what I needed to enjoy a great life. There was no more abdominal pain except for occasional rectal discomfort. The only real physical disability I have is some difficulty tying my right foot shoelace, cutting my right foot toenails, working under the car but only when the bag contains some effluent and standing up again with skis on. None of these is a serious constraint, provided the bag is emptied regularly. The problem with skiing is the risk of bag flange failure whilst the skin may be sweaty and you double your knees up picking yourself up off the ground. However with perseverance, by 2002 I had learned to stay on my feet. By 2005 I'd learned to negotiate a "red route" and enjoy skiing. One lesson I learned in 2002 was to remove the skis before standing back up — it's so much easier and kinder to the bag adhesion. Another lesson was that it is wise to install a new bag as soon as possible after coming off the piste!
One thing that you must be wary of is lifting heavy objects as the weak point in the stomach wall (at the stoma) is liable to hernia but it doesn't limit my usefulness for I need be no more cautious than anybody else should be to their back.
For the first 10 years I changed the bag every 2 days. I experimented with different bags and barrier systems but I always returned to Coloplast Assura Maxi — I’d be extremely upset if they stopped making the bag (for a short time). Indeed I was rather annoyed when they made a small design change but I got used to the change. In 2004 I discovered how to use Coloplast Solid Paste. I had previously found it unmanageable to mould with my fingers owing to its extreme stickiness. But after reading the instructions, I learned that with damp/wet fingers it is so easy to stretch and flatten into a ribbon to apply to the skin around the stoma. As a result I don't have to be so careful with rising contamination, there is no skin inflammation and the bag flange wafer can be left on for 3 instead of 2 days. By February 2005 I was so impressed with this new procedure. Not only do I get an extra day or two between changes, I have absolutely no skin inflammation now surrounding the stoma. It concerns me that it took me 10 years to learn this. Why was I not taught all the techniques in hospital? What more do I have to learn by chance?
An early problem was caused by my cutting the hole in the bag flange too small with the result that the plastic edge of the hole was cutting into my spout. I didn’t discover this for a few weeks because the cut was on the lower side of my spout, the side I could not easily see. At my request my daughter had one of her few looks at my spout to confirm the problem. This was quickly corrected by cutting the hole larger — leaving 1 mm annulus around the spout. It is important to minimise the annulus since the stoma effluent irritates the exposed skin and can create a serious problem if left to get worse. If your bag is not secure or the skin is damaged and either sore or itching, life would be miserable. Maintaining the skin around the stoma is the secret of a good life with a stoma. I am ultra-careful on bag removal, hair shaving, solid paste application, bag hole cutting, bag locating and sticking, emptying bag regularly (every 3-4 hours) to prevent effluent rising up the bag and contaminating the small area of exposed skin. Further I never recline during the day unless the bag is empty, and when I run I compress the bag over my stoma to prevent liquid jumping up onto the exposed skin. The greatest risk of skin contamination is lying down in bed so it is wise to eat at least 6 hours before bedtime to allow most of the effluent to pass out beforehand. Further I have observed that the discharge seems to stop for many hours once the body is lying down prone.
I am careful to stick the bag in a vertical position for three reasons — so that it hangs without a twist, so that it can be clamped to my right leg in bed without a twist and so that it hangs between my legs while sitting on the WC.
One of the small inconveniences for me of a bag, was the persistent and increasing weight as the bag filled between my legs. Apart from hanging on the stomach/stoma, the bag oscillated. A couple of months after leaving hospital I invented my own solution to these problems by making a small cloth bag from a section of an old shirt sleeve, sewn along one end. The bag is pinned by two safety pins to the elasticated band of my briefs and contains the hanging bag to provide support. This becomes more crucial as the bag fills and the weight and swing can otherwise be felt at the point of attachment on the stomach.
One learns to sleep on the side and to reverse via the back. To save the bag flopping in all directions I developed a scheme about 6 months after the operation, of applying a lady’s headband around my thigh and encircling the plastic clip that closes the bottom of the stoma bag. Through experimenting with different manufacturers bag outlet clips I eventually found that the ConvaTech clip held most securely overnight in the headband. I am fortunate that my stoma position and the bag are just long enough to reach the band whilst standing. I found this a very comforting arrangement since I know where the bag is and I cannot lie on it. But I've since learned to eat long before bedtime, and hence have little output in bed, and I no longer use the headband.
Until 2 months after discharge I used a transparent Coloplast Assura one-piece bag and I then started to experiment with a flesh coloured bag and also a two-part bag. I soon reverted to my original transparent bag, principally because it assisted with fitting the bag and it enabled me to inspect my stoma and its cleanliness following bag emptying. Whilst it is not so pleasant to look at the contents of the bag it is reassuring to know that it is well cleaned around the stoma after emptying. With care during the day I can ensure that the stoma stays clean by emptying early enough, not reclining and by not jumping up and down/running.
I can empty and clean the bag in about 2 minutes whatever the circumstances. The bag hangs conveniently vertically into the WC between my legs. Provided I have not let the bag overfill it is a simple process to remove the ConvaTech clip whilst bending the outlet upwards to prevent flow. Keeping my hands clean and finally lowering the outlet carefully into the WC I open my fingers to let the effluent flow. Without a water bottle it requires one cigarette shaped roll of soft toilet tissue liberally soaked in water. If there is no sink, as a last resort the toilet tissue can be wetted by flushing the loo but it is more hygienic to use one's own urine. A single 150 ml bottle of water, preferably warm, is sufficient to wipe/wash out the bag outlet after wiping the bag outlet clean externally with folded dry toilet tissue. Ideally three 150 ml bottles full of warm water give a perfectly clean bag. After replacing the clip, a dry toilet tissue dries off the water residue. Clearly there is a smell. But it's no worse than that of a normal person in an adjacent loo. It is helpful if there is an extractor to rid the smell as quickly as possible. And there are air fresheners available on prescription.
My output is normally of liquid consistency, i.e. diahorrea. Only after a meal of many vegetables including potatoes in particular, is my output more pasty. The liquid consistency doesn’t concern me, though the pasty consistency makes for a more manageable emptying but this is only of significance if I have let the bag fill too much.
Another innovation at about 6 months was my discovery of the ConvaTec shield that ConvaTech kindly sent me 3 off free of charge. I also discovered the Coloplast linen bag cover. I was not shown these items in hospital. I have found them indispensable since it has given me the protection that I want. This saves me worrying about knocking the stoma on the desk front when standing up and whilst playing with the children (mid 90s), they could not inadvertently knock me. It generally enabled me to forget entirely about the stoma. At first I wore the shield with a belt to keep it in place, but it was during this period I suffered occasionally from heat rash due to the pressure and heat enclosure. I then developed my own unique solution by velcroing the plastic shield to the linen bag. The shield sticks to the velcro sewn on the bag cover. The linen bag hooks over the top of the stoma bag and envelops it. I learned how important it was to have a continuous garment layer covering the bag assembly e.g. vest over the whole assembly to prevent catching the flange/wafer edge as the garments move around slightly. Otherwise there was a tendency for the bag flange to be lifted by any garment edge dragging across the bag edge. It is important to have a continuous garment layer. The smooth surface of the shield enables the garments to slide easily over the bag assembly.
The shield has a further function which in my case is not necessary. It serves as a barrier to attenuate any burping or gurgling. And it could be packed with cotton wool to attenuate sound. However I do not normally produce any wind and normally my stoma is active without making any noises. I believe that total mastication of my food before swallowing, is a major factor in this and as a bonus it minimises indigestion as experienced by all people.
The frequency of my bag changes has eventually stabilised at 3 days between changes. Whilst there is great satisfaction in a new clean bag, the 15 minutes it takes means that the longer it can be put off the better. However there comes a moment when the urge to change is unavoidable. It is announced by an itch that is usually the result of effluent collecting in the cavity created where the flange adhesive "melts" on the underside of the flange hole. My objective is to change before any itch starts — I am meticulous in the care of my skin for I know my quality of life depends on it. After removing the bag the feeling of pleasure is immense while wiping the skin itch; but like all itches care must be taken not to overdo the "scratching". One minute’s careful wiping with warm water leaves the skin feeling marvellous and ready for the next bag. Click on these words if you want to see the full sequence of steps just referred to. Hence it is my objective between changes to keep that area clean and as undisturbed as possible. Frequent emptying helps to ensure that effluent does not get too high to get on skin. When running, this is aided by my supporting/holding the assembly against my belly with my hand. In 2004 I discovered how to use Coloplast Solid Paste. As a result I don't have to be so careful with rising contamination, there is no skin inflammation and the bag flange wafer can be left on for 3 instead of 2 days.
As mentioned earlier, what remained of my rectum (about 6 inches) caused some pain and worry whilst in hospital. This cleared up and subsequently I was only bothered periodically by passing blood in a minute quantity from the rectum. This occurred for a day every few weeks; otherwise there was a small discharge of mucousy liquid every day. This discharge was expelled voluntarily by opening the anus muscle and contracting the rectum. It was preferable to do this voluntarily when the urge first appears, for otherwise I could get caught occasionally with the strongest urge (just like when I had full blown UC) though the risk of a public accident was nil. At worst I might discharge a few drops of liquid and then only if I delayed reaching a toilet for a long time. The rectal discharge was neither worrying nor inconvenient. Since the operation in 1994 I tried Colifoam and Asacol suppositories when my rectum bled but I did not persist because it didn't seem to do much. The rectum was removed in April 2005 — see later.
Assuming that removal of the colon removes all the underlying medical problems, the choice between a stoma and a reconnect, i.e. internal pouch, to the rectum is difficult to make. Different people will have different reactions to each choice. Many people find the idea of a stoma repugnant, and have great difficulty emptying the bag let alone changing the bag and looking after the skin surrounding the stoma. These activities should be done with great efficiency to ensure that the skin around the stoma is kept in tip-top condition. A further issue is the smell whenever the bag is opened for emptying. However the smell is no worse than doing a normal toilet. However the fact that you might be handling the output at the same time as a smell is off-putting to many people. Only you know if you can cope with the stoma which is effectively an open wound though there is no blood and it is not sore to touch and handle provided one is gentle.
The reconnect (internal pouch) has I think four disadvantages. Firstly it is a more complicated operation if done all at once and the delving around in the bottom of the pelvis is not straightforward for the surgeon. So I believe that the reconnect is best left to a later operation when the surgeon can take his time and ensure that the job is done to the best of his ability, and that means secondly minimising the risk of damage to nerves and blood vessels adjacent to the rectum that service your bladder and sexual organs. Thirdly, without the colon the output is very liquid and high in acid (bile juices) that are very corrosive to the anus and can result in much discomfort. And fourthly it would appear that the internal bag associated with a reversal can in itself develop IBD or a type of ulcerative colitis and believe me that is not comfortable.
So I am afraid that it is a very difficult decision but I would favour a stoma as the first stage. After some experience of the stoma you can decide to proceed to an internal pouch in stage 2 at a later date if you find the stoma intolerable. One issue that is common to both options is the skill of the surgeon and I am afraid that you might have little choice in this matter. But when you discuss the matter with the consultants and doctors you should ask what their competence is in the two options and that might help you to make up your mind.
After the stoma operation in 1994, I made follow-up visits to my Consultant every month for 3 months, then quarterly for 9 months and then 6 monthly until in Aug 96 I volunteered to stop visiting. In 1999 I read about the risk of cancer in my rectal stump, especially if it still had UC in it, as mine seemed to have. So I saw my Consultant in August 1999 and he was minded to remove it — because of the risk of cancer developing — though he offered an alternative of a biopsy with a flexible probe to see the extent of the inflammation and/or evidence of dysplasia which is early signs of cancer.
Update December 2004 Annual endoscopy examinations have kept the proctitis (UC in my rectum) under observation. Biopsies taken at random along the 6 inch length, showed no signs of dysplasia until December 2004, resulting in the need to remove the rectum. Apart from the risk and discomfort of the major surgery involved there was a small risk of bladder and sexual dysfunction due to inadvertent severing of critical nerves/blood vessels. But I accepted Colonel Edwards' advice to have the rectum removed on 26 April 2005. An unlikely option was to have a "pull-through", creating an internal pouch and dispensing with the stoma. But this was discounted because I cope well with the stoma and it might be difficult to retrain rectal muscles after 10 years dormancy.
· I elected for epidural instead of morphine etc. My whole body from belly button down was immobilised until 3-4 days —no feeling, no movement except to wiggle toes. The latter was reassuring though the anaesthetists seemed concerned about the total lack of movement/feeling. I couldnt sit up. By 4th day, pressure sores developed on heals. On reflection, I think I’d prefer the mobility and self control that goes with morphine.
· Surgery consisted of 8 inch reopening of old vertical scar from belly button to pubic area. The ileum was moved out to gain access to bottom of abdominal cavity to excise the 6 inch rectum. The anus was removed and a neat one inch join appears externally.
· On return to the ward following surgery, I took and ate a sandwich which was well received by my system and indeed was passed out in my stoma bag after about 24 hours, so this gave confidence that all was fully functional. But the surgeon was not best pleased that I’d eaten!!! I blame the hospital communications, for I didn't know any better.
· Soon, the ileum developed what they called ileal colic/paralysis. For about 5 days the ileum was convulsed with uncertainty as to what was up and down. Nothing came out in the bag and meanwhile the stomach was producing bile at a rate of 1 litre every 12 hours. The ileum appeared not to be accepting any of the bile for reabsorption, which happens naturally to the 8 litres of bile that can be cycled daily in a normal person. And it had to go somewhere which was in vomit. Eventually this had to be brought under control by intubation through the nose into the stomach, allowing oesophagus and teeth to avoid erosion. After about 5 days the ileum settled, started processing the bile and gradually water and food by mouth, allowing IV drips to be removed by day 8, and home on day 10.
· I went in weighing 64kg; after 5 days without food I weighed 72kg!!! which is explained I think by fluid retention. After the operation my scrotum was the size of a grapefruit with body fluid for a few days!! I came out weighing 60kg. Isn't that an amazing fluctuation?
· Fortunately I steered clear of any hospital acquired infection, e.g. MRSA, though I saw numerous examples of poor practise that seem quite innocent but clearly result in greater risk of bacterial transference. I believe that only the institution of theatre-like processes, for at-risk patients in closely-controlled wards, will reduce the MRSA problem in UK hospitals.
· After 18 days I'm very happy that bladder and other functions have returned successfully. I'm still quite fragile across the belly and in the rear-end and thus short-tempered. I like to lie down half of each day. I plan to return to work on 23 May.
Update 5 Jun 2005 A new chapter in my life has begun and I have decided to share it with the world as it unfolds. I will update the following log as significant events occur. Please e-mail me if you have information that may help me.
· 23 May I returned to work on 23 May 2005. My only problem was sore leg muscles as they needed toning up after a lazy month. Today my wife relayed a telephone message to me that Col Edwards wanted me to attend his outpatients clinic on Wednesday 25 May.
· 25 May This was the most awful day of my life so far. I was naive to think that Col Edwards had called me in, at 2 days notice, to see him to give me the all-clear. And it should have been even more obvious when I received a letter invitation on 24 May to attend his outpatient clinic on 29 June. It turned out he had the bad news to break to me, that they'd found cancer (poorly differentiated invasive adenocarcinoma) in my rectum classified Duke's C meaning "Cancer has spread through the bowel wall and into at least some lymph nodes". He said it was found in 4 of the 24 lymph nodes surrounding the rectum, that he had removed along with the rectum. He said 5 is a danger point. He is satisfied that all the relevant surgery so far (based on known information) has been done. So I am awaiting a CT Scan within 2 weeks and a decision on whether further surgery (other organs perhaps) and chemotherapy is appropriate. It sounded as though chemotherapy at least is necessary. An immediate issue was just who to tell. And I quickly came to the conclusion to tell all my friends so that their thoughts and prayers are with me. Col Edwards had not been aware of the tumour, even during the operation, so I was subsequently worried he had not got it all out. Subsequent examination of the pathology report suggested to me that there is a significant risk that some may remain in my pelvis. I learned that the tumour was in the closed off end of the rectum, invisible to the endoscope camera. Clearly the dysplasia that had been detected in the rectum wall in December was related, and I regret delaying the operation until after my skiing holiday in April, but that's life.
· 27 May I had what I thought was food poisoning when nothing was passing through and I was vomiting everything. The hospital A&E did nothing except bloods and x-ray and some gentle prodding and the gut started working again Saturday lunchtime. The doctor said it was a partial obstruction. Though they did nothing they did a wonderful job, and knowing they are on my doorstep is really reassuring. I've never had that before. We'll just take these things as they come and deal with them.
· 1 June I've had a long bank holiday weekend to think about it. I know that time is of the essence so I went into the hospital today and on the 2 June to progress an appointment for the CT scan. It was scheduled on 20 June, but I subsequently managed to get this improved to 9 June. My anal wound has almost completely healed and is no longer uncomfortable to sit on.
· 3 June My 55th birthday. On Friday I got the 0639 train to work and had breakfast with some work colleagues to celebrate. On Saturday evening Linda, Hayley and Tamsyn took me for a meal at the Royal Oak Pirbright.
· 4 June Today I received a letter from Dr Middleton, an oncologist, to attend his outpatients clinic on 13 June. So things are moving as fast as I could hope for.
· 9 June I had a CT scan today. Preparation (drinking 1 litre of orange/iodine) took 90 minutes and then the 3-part scan took just 20 minutes and diagnosis will follow on Monday 13 June when I see oncologist Dr Middleton. On leaving the hospital today I made my customary visit to the charity bookshop, and I was astonished when my eyes landed straightaway on Betty Shine's "Mind Magic". I have been impressed by her stuff before and reading this afternoon I was inspired by her evidence that "there is always someone wishing to link up with your mind and help you, but unless you meet that person halfway.....". I thank all friends for helping me through the uncertainty.
· 13 June The oncologist's expertise, CT scan and blood test results came together today with a good prognosis because there are no obvious signs of secondary growth/development of the cancer. So I have accepted the advice to proceed with 5FU/pump continuous chemo for 3 months to sweep up any residual cells. Radiotherapy may be required in the pelvis — Dr Middleton will refer back to the colorectal surgeon Col Edwards for more objective assessment of whether he got adequate margins on the tumour.
· 16 June Today I received the most wonderful inspiring card from my great friend Fay Broyles. Fay has overcome her own problems and her faith in God is awesome. Fay is the kindest person I know and we lost Internet-touch in April 05 when she lost her job. I miss her email support in recent weeks but Air Mail to Texas only takes 8 days.
· 23 June I was counselled at St Lukes Cancer Centre, Royal Surrey Hospital and again I was given options for treatment. I chose the PICC that entails feeding a plastic tube from a prominent vein in the crook of the arm into the heart to deliver the chemo from an infusion pump that was shown to me and its operation/maintenance described. It will deliver drips over 7 days and be replaced by the District Nurse. The external chemo "syringe" is quite large but I'll cope with it and tubes in bed which will be the only problem. It will hang around my neck inside my shirt during the day. I'm disappointed that, despite my repeated enquiries the two consultants (colorectal & oncologist) hadn't completed their correspondence on whether radiotherapy is necessary but I'm confident the delay is a result of their workload and that I don't need this treatment. There isn't too much urgency to get on with the chemo because its efficacy is not brilliant, and I'm relying on the hope that the offending tissues have been removed and that there is low immediate risk of further growth. I will probably start chemo on 28 June. Whilst at the Centre, I took the opportunity to visit The Fountain Centre that provides support and in particular, on Complementary Therapies. It is a wonderful tranquil place and I read much literature. I have never been one for unconventional therapies, except God and my own willpower. But one thing I'm going to pursue is diet and I started next day with apricots, tomatoes, carrots and spinach.
· 25 June I attended the monthly Bags of Support group meeting of the hospital stoma support group at Frimley Park Hospital. As previously mentioned, this group provides an invaluable service, as I rediscovered today. I met someone who was in exactly my position 2.5 years ago, despite a number of major setbacks in the interim. That was reassuring, especially as she looked and sounded a picture of health. Secondly the visiting speaker's subject was craniosacral therapy which made me reconsider my views on complementary therapy. As an electrical engineer, I am aware of the wonders of the electro-magnetic spectrum, Maxwell's Equations and indeed at a deeper level, quantum mechanics, Heisenberg's Uncertainty Principle and Einstein. Studying them at University in 1969-72 was hard going and I was glad to take up a career in more practical applications of engineering. But in recent years my study of matters spiritual brings me back to these subjects and, whilst I'm no more capable of understanding the subjects in depth, I am more respectful of their relationship with God and how this Universe functions. The craniosacral therapist clearly had little scientific expertise, as I exposed when I asked whether she had found differing success depending on what shoes she was wearing whilst conducting hands off therapy. I explained in a kindly and informative manner how the insulating properties of one's shoes (and indeed the humidity of the air) govern the electrostatic charge build-up in the body and as her therapy was linked to the electromagnetic field (aura) surrounding the patient's body likewise with her body..... She didn't understand the technicalities that I raised, but acknowledged their significance. This showed me how she could learn from me just as I could learn from her. So I am going to try some of this — the objective being to repair my immune system if it is not working well and anything else I don't understand!! At £20 per hour it's not going to break the bank.
· 28 June Good news and bad news today. First the good news is most encouraging. Since 13 Jun I have awaited the colorectal surgeon's considered opinion on whether he believes he removed all the margins of the tumour. Following numerous phone calls to hospital secretaries, today I was sent a letter explaining that the mesentery?? tissues (including the main blood supply/lymph drainage) to the tumour site were removed along with the colon, by Mr Skipper in 1994. That left the rectum supplied by other blood supplies from the lower pelvis and my lower rectum that shows no signs of cancer, so this gives me confidence that metastases to liver and lungs were unlikely and tissues adjacent to the tumour may not be contaminated. We will see. Thank you Mr Skipper. Now they will finalise my chemo (no radiotherapy I expect) and I have been asked to pencil in Monday 4 July to get underway with chemo, though the chemical combination may now be changed by Dr Middleton, given this new information. The bad news is that my only root-filled tooth shattered yesterday and broke off at gum level, leaving an exposed root. This morning the dentist gave me three options — surgery to cut out the root, fill over the root, or leave exposed and brush clean daily. I am aware of the controversy in the dentistry profession about the possibility that bacterial contamination in root fillings may be the root/route of many body infections. So I decided to fill it over next Thursday 7 July and in a few months time I will have the surgery.
· 1 July It's already 2 months since the operation and I'm feeling great. I've deliberately put on nearly a stone in weight in anticipation of a poorer appetite!!! I was quite relieved to learn today that I've got a slot at 0830 at St Lukes Cancer Centre on 4 July, hopefully to start the chemo treatment. The delay was caused by the Consultant correspondence that I instigated. But it was worth it as follows. The letter I received confirmed what I'd been told on 28 June; the surgeon states "My feeling is that the operation was entirely adequate and that because of your previous surgery where the normal drainage of the rectum was altered when the colon was removed this may actually have some beneficial effects as far as the prognosis is concerned". This is good news and I don't anticipate radiotherapy being necessary.
· 4 July I'm sitting here this evening feeling great. It's now 6 hours since I got this infusion pump installed. It was a long day but they are so nice in St Luke's Guildford. I wonder why cancer patients get treated so well. If we were all so nice to each other all the time the world would be a better place. The pump dispenses 5FU at a rate of 23mg of 5FU per hour. I haven't felt any high yet!!
· 6 July 48 hours after starting infusion (and 2 days work), I have felt no adverse effects whatsoever. This morning immediately after rising, as I emptied my bag in the WC, I found blood dripping from my PICC arm at a modest rate. I was sure the exertion rising following dormancy in bed must have upset the catheter exit wound. After wrapping the arm in bandage, I went to St Lukes rather than my local hospital and I was pleased to find Sister Gemma (who had installed it) on duty to examine and redress me. It turned out that I was the first patient at St Lukes, to receive the new Groshong NXT catheter and the best method of securing the line externally was not clear. Lying in the crook of the arm the catheter exit point is subject to much arm flexure and the best method of anchoring close to the exit is not obvious. I wish they had entered the vein a few cms down the forearm. Now I will have to be more careful than I had expected to be, when bending that arm for the next 3 months.
· 11 July Yesterday was the best of the year regarding the sun. So I was out awhile getting a little more tan. My treatment supposedly limits my sun exposure. I'm being careful of course, but so far no noticeable effect. I even drink a couple of glasses of wine or beer or whisky despite the warning on the Warfarin that alcohol should be avoided. But I'm on a very low dose of Warfarin. So to summarise, after 7 days chemotherapy I'm still my old self; my appetite seems better than ever and I hope this continues for the 3 months treatment. I'm working full days and keeping up my voluntary work. No signs of lethargy/tiredness or any other potential side effect such as nausea, mouth ulcers, sore hands or sore feet. The stoma output hasn't changed though that has always been diahorrea in any case. The District Nurse came today to change the Infusion Pump. After some initial uncertainty and a telephone call because she didn't recognise the new catheter termination, this was quite straightforward but it is essential to maintain completely sterilised conditions while reapplying the new dressing. I am not at all happy with the way they have terminated the catheter adjacent to the crook of my arm. When I bend my arm the fine tube kinks and I wonder if it will last 12 weeks. And it is not very comfortable but to reinsert it would be too much effort and they might do no better next time.
· 21 July I was at the hospital this morning for my 3rd week check-up to ensure that chemo is not having adverse effect. Blood tests were OK, so I continue with the treatment, and still suffer no side-effects. I am keeping remarkably well. The only side-effect being a mild taste/sensation in the lining of the mouth. I made my first craniosacral therapy appointment for next Tuesday. I got home at 1330 and was going to go into work in Central London, as I have a few jobs to complete before 2 weeks holiday. But seeing London bombing on TV I just stayed home. Linda and Hayley go to Florida next week. I'm receiving my brother and his wife for 5 days before going to Torquay (seaside resort in south west England). From there I'm going to travel by train to Berwick to see my Mum for 3 days in time to return to get my infuser changed on Thursday 4 Aug.
· 26 July Today I did my first ever alternative therapy (Craniosacral). It was an interesting experience. I went in open-minded, and though nothing extraordinary happened - I didn't get any strange feelings except pleasure as this nice lady caressed me. It was especially nice when she finished off with my feet. And I nearly fell asleep twice. But her few spoken words were helpful and reinforced my inner strength. Whilst at the hospital I went to show the nurses the red track, coincident with PICC line vein in my upper arm that has been sore for 48 hours when I straighten it. She called Sister. Sister called a doctor and I've started an anti-biotic course plus painkiller, though I don't think the latter necessary. They want me to go back Thursday for another check on progress.
· 28 July The discomfort in my arm has eased and the doctor is confident that it is phlebitis — inflammation of the vein in reaction to the foreign body (catheter). But I will continue with anti-biotic to counteract any risk of secondary infection. Otherwise, after 4 weeks chemo I'm feeling wonderful and I'm off to Torquay today for 2 days and then on to Berwick to see my Mum for 3 days.
· 31 July Despite cloudy skies I had a great 6 days with my brother and his wife latterly at Torquay from where I returned this afternoon. The phlebitis has cleared up completely, so much so that I had no qualms about disco dancing last night, but I was slightly concerned when the girls started twirling me by my PICC arm. On undressing in my hotel room I was shocked and concerned to realise that all the clingfilm and steristrip adhesives dressing my PICC termination, had completely lifted (because of sweat) leaving everything dangling. At 1 o'clock in the morning without supplies, there's not a lot you can do; I considered going to the local hospital but ended up strapping it together with Sellotape which I was pleased to have refreshed this evening at Frimley Park, none the worse off. I relate this to show how I want to get on with the things I enjoy doing, even if the doctors told me not to engage in physical exertion of my PICC arm — you should see me disco dancing!!! And I'm so grateful that I am as fit as I am to do all I want. I'm off to Scotland in the morning to see Mum.
· 11 August Thank God for another wonderful week in perfect health, though my horizon (now 3-5 years minimum) is increasing week by week. I spent 7 hours in Royal Surrey (RS) today as they first couldn't get my blood results (White Blood Count lost!!!) given yesterday at Frimley Park Hospital. So I had another blood test at RS and then they had to make up three infusion pumps for the next 3 weeks and then finally I had to go back because they'd failed to give me the prescription card without which the District Nurse would not have changed my pump next Thursday. Never mind, everything looks good to me and I continue with the final 6 weeks chemo.
· 1 September I have had a wonderful 3 weeks in the best health I've ever had. Maybe I never appreciated it before. I've had one craniosacral, one reflexology and one body massage free of charge thanks to Tricia and Kim at the Fountain Centre. I've practiced reflexology (foot touch/massage) on my seriously ill friend in hospital and she loves it to relax her and send her off to sleep. There is only 3 weeks to go in my chemotherapy treatment. At my request I saw my file today and I was so pleased to read my surgeon's advice to the oncologist that his surgery on me had been a TME (Total Mesorectal Excision) of the rectum, as though it were a Stage 4 tumour, and that he had got a good harvest of lymph nodes. That means he got as much as he could without risking my other bodily functions in that area. So that boosts my confidence no end. If you opened and listened to the TME link in the last sentence you will know that a rectal tumour is the single most sensitive cancer to the surgeon's expertise and that Professor Heald, Basingstoke Bowel Cancer Research Unit, has developed a procedure and is the best in the world. My hospital is only 20 miles from Basingstoke and I have been hoping that Col Edwards practices Prof Heald's method. In a consultation with Col Edwards on 26 Oct 05, I asked the question directly and was overjoyed to learn that he was trained by Prof Heald and participates in his research projects.
· 10 September An interesting thing happened last Saturday as I walked in the hospital to visit my sick friend Iris. In the lift I got chatting to an old man who just told me he was going to get a colostomy on Wednesday. I said, "I've got a stoma and its not as bad as people think". He said immediately, "Can I see it please?" I had no difficulty with this, though he would be the first person ever to see it! So I demonstrated emptying my bag in the disabled toilet. Thankfully nobody saw us going in or coming out!!! He was much reassured and I wished him well. Last night whilst visiting Iris, I decided to look for him and spontaneously popped into Ward F7 where I had been 10 years ago, and who should be lying there immediately in front of me but that gentleman, recovering from his operation that same day. The nurse allowed me to speak to John Nash, and I will encourage him in the coming days.
· 22 September For the record, my blood results were as shown in the chart.
· 26 September After three months the PICC line was withdrawn and chemotherapy finished today without me suffering any adverse side-effects throughout the treatment. I had no previous intimate knowledge of cancer and chemotherapy, so it astonishes me that I could come through this feeling so good. It grieves me that some people experience the opposite and I suppose it depends on the body's metabolism. So I haven't yet had to endure the more serious effects of cancer that many of us will ultimately have to go through. I'll put it off as long as possible and am pleased to give you the benefit of my experience so far:
o Everyone (not just UC sufferers) should always inspect their stools for signs of change (e.g. blood smears/change of colour to rust) that might indicate colorectal cancer
o After many years, i.e. greater than 10, Ulcerative Colitis should be regarded as a precancer, so in my view, UC sufferers must ensure they are monitored regularly (preferably by endoscope) for signs of abnormal cell development
o Don't hold onto your rectum if it's got colitis. Get it out
o Don't delay an operation if there is any indication of precancerous cell development
o A PICC/infusion pump is a good chemotherapy delivery procedure. Try to enter the arm 2 cm from the crook to allow arm bending in comfort
o After diagnosis of cancer continue your normal daily routine and activities if you can
o Research complementary therapies, and practise what suits you. In particular, confide in friends and family and engage your mind to control your emotions and recovery through hope and self-healing. That's what I'm doing right now.
6 December Life has got rather uncomfortable since completing chemotherapy in September, but I am undergoing a battery of tests to diagnose the problem. The problem is discomfort in the area of the rectum (sore to sit on) and also what I can only call mild indigestion in the digestive tract (difficult to sleep on). It's getting to the stage where I would rather stand or lie down, than sit. I go to bed early because my sleep is not sound. The doctors don't want to do the whole body CT scan until the chemo has worked its way out of my system, i.e. after 3 months. So the CT scan is on 14 Dec with a result on 21 Dec. When I try to pass urine it wont come straightaway and while I thought that might be operation nerve damage, the consultant thinks otherwise. My reading suggests it could be a prostate problem and that is reinforced by the pain sitting on it. I had a standard x-ray last week and all that could be seen were the expected clusters of small stones in the kidneys and nothing stuck in the ureters so that's one potential problem discounted. As tests last week showed blood traces and white corpuscles in my urine, the consultant still thought it could be a stone in the urinary tract caused by chemo (5FU can form crystals that x-rays would not detect). So I had an IVU (Intra Venous Urogram) on Tuesday this week that showed the blood system/kidneys to bladder are OK. Then I had an ultrasound scan of bladder and kidneys yesterday, that again showed normal functions. This is good and bad because it doesn't explain the problem. I'm tempted to ask for a prostate test immediately but even if that's the problem it can wait. The next milestone is the whole body CT scan on 14 Dec. I'm tempted to request that to be advanced, but I've learned that the system doesn't react favourably to such requests and what's a few days. So by Christmas they should know what's in store for me. I'm definitely uncomfortable, but thankfully my general health and appetite are OK, so I am hopeful that these problems are not recurrence of the cancer.
21 December The last 3 weeks have got progressively worse and I have worried a great deal. And I was confident of a clarification today, when I saw Col Edwards this afternoon to get the result of the chemo follow-up CT scan. I learned good news on the whole but not conclusive. He had not received the radiologist's report on my CT scan (despite me checking with his secretary yesterday, but I obviously didn't ask the right question. Who are the specialists you ask yourself). But Col Edwards had the CT scan on his monitor (low resolution and his untrained eye) and he stepped me through it making reassuring noises through lungs, liver etc but when it came to the pelvis (his specialism) he was non-committal, saying that an MRI scan was more appropriate. Though he didn't express any concern. I think his reticence is because of the complexity of tissues in the pelvis. But he did say the pelvic bones looked in the clear. He immediately arranged an MRI scan on Friday morning 23 Dec, as a Christmas gift to me I think. And even though they probably finish early like most of us on Friday, he has promised to consult the radiologist and compare CT and MRI scans and give me a diagnosis by phone on Friday 23 Dec afternoon. I explained my enlarged testicle (4 weeks old) and he shone a torch through to show me that the problem is probably fluid in the sac that might be caused by infection. The solution to that would be anti-biotics or draining by syringe. He said he must leave that to the urology consultant Mr Palfrey whom I see next Wed 28 Dec. Given Friday's (23 Dec) clear??? scan results, Mr Palfrey will I hope diagnose prostatitis that I am sure infected the testicle sac. This scenario seems plausible to me given the possibility that chemo increased my susceptibility to such an infection of the prostate which has knocked-on to the testes. I still live in hope of avoiding cancer — indeed more than I had this morning.
23 December I had the MRI scan this morning. True to his word, Col Edwards called me at home at 1600, I regret with the bad news that a comparison of CT scans between 9 June and 14 December shows an "abnormal thickening" in the perianal region. So the prostatitis theory is losing credibility. Not the Christmas present I was hoping for, but we'll take one day (or one week) at a time, as they say. I suppose it could be adhesions/scarring from the operation pressing on nerves when I sit. Or it could be an abscess. Anybody got any other ideas? I have been given a day appointment for a rectal biopsy on Friday 30 December. The result will be some days after that so I shan't update with any news before say 6 January. I'm certainly getting good attention from 3 consultants in rotation, that gives the opportunity for second opinions. Indeed I have an appointment with Mr Palfrey, who is the hospital Medical Director, on Wed 28 Dec to get the result of all the urology tests he had done. Let's hope he has found a curable disease or alternative explanation to cancer. Have a good holiday and happy new year. Thank God for Jesus.
28 December 05 I saw Mr Palfrey today and got a comprehensive rundown on all the tests carried out so far. He concentrated on his own urology specialism, but reviewed the CT and MRI scans with me and showed me the "thickening" in the anal canal. My PSA test result had fluctuated over two months and now reads normal. This could indicate prostatitis. My swollen testes sack is probably an independent, trivial problem and they'll fix that after Friday's biopsy. But I'm getting good attention, today's serving to independently review CT and MRI scans done last week, and also I got confirmation that there are no kidney/urinary tract problems, except a 2mm stone in each kidney, which are no problem provided they stay there. Mr Palfrey concurred that there is only the "thickening" in the anal canal to be concerned about, and we'll see after Friday's biopsy. But even the biopsy could be indeterminate. I am convinced that the problem is an adhesion/scarring or maybe prostatitis.
30 December 2005 It takes a little determination tonight to write up my experience today having had a biopsy taken from my rear end. It's now a trifle more tender than it was! The biopsy today was carried out under general anaesthetic by a radiologist consultant using an ultrasound guidance technique to sample tissues in the perianal region. Col Edwards showed up before surgery giving me confidence that I am on a joined up care pathway. Because the CT scan results are still quite recent, I had not been given details of the CT scan until today when I took the opportunity to read my medical notes and see the radiologist's unauthorised CT scan report. It is unauthorised because the sponsoring oncologist consultant Dr Middleton had not yet authorised it, and indeed today I received a letter from the Royal Surrey, Guildford inviting me to a consultation with Dr Middleton to debrief on the CT scan on Wednesday 4 January. But I am ahead of the game through Col Edwards and Mr Jourdan, who arranged today's biopsy. And though I didn't get time with Col Edwards to get his analysis of the CT/MRI scans, I took the opportunity to read the conclusion of the CT scan report on the file, that states "there is evidence of progressive disease in the pelvis with an increase in the presacral soft tissue and an apparent new deposit anterior to the left psoas". I think that these consultants have seen enough tumours in their career to be more specific than disease if it is indeed a tumour(s). I'm not criticising, I'm just giving them the benefit of the doubt and it suits me too, because I am still hopeful that there is some operation tissue damage that will be manageable. And would you believe it, I have an appointment with Col Edwards on Wed 4 Jan at Frimley Park before going over to see Middleton at the Royal Surrey Guildford. Then I have an appointment with the biopsy radiologist on Mon 9 Jan. It occurs to me that I should postpone the Middleton appointment until after Mon 9 Jan. I'll do that tomorrow. This is an example of how you can order things for best effect. I must be costing the NHS a bomb, and I'm grateful for all that they are doing for me. I am beginning to appreciate one of the reasons for keeping this log. It is rather difficult to remember all of the symptoms and tests that have been carried out. Even my hospital notes seem a jumble and would take too long for each new consultant to assimilate. So it is incumbent on me to summarise and as I said at the beginning of this story, manage your own health to the best of your ability. I am currently being treated by 4 consultants, and though I regard Col Edwards as the lead, and he's doing a wonderful job, it seems to me that I am the only one that has got the complete picture. Indeed it's me that can feel and describe the pains, so I can try to lead them to the solution. Have a wonderful new year 2006 and keep me in your thoughts and prayers please. I anticipate the next entry in this log on 9 Jan 06.
4 January 2006 Despite the weekend and Bank Holiday on Monday and thanks to our wonderful National Health Service, I can report, earlier than 9 Jan, the bad news that I have local cancer recurrence in the pelvis, but the good news is that none of my vital organs is affected. Today I saw Col Edwards at 1400 to be told that the biopsy taken on Friday 30 Dec had shown metastatic signet ring adenocarcenoma of the rectum in the pelvis. Despite my earlier comments, I had not postponed my appointment today with Dr Middleton at the Royal Surrey, Guildford at 1550 hours and he was pleased that the biopsy had been carried out, because it meant that he could anticipate the hospital multidisciplinary team meeting decision next Monday (9 Jan) and immediately refer me to consultant clinical oncologist Dr Sharadah Essapen on Wed 11 Jan at Frimley Park. He tried to fit me in to Dr Essapen's clinic on Friday 6 Jan but it was not possible, so they prescribed stronger painkillers that made things a lot easier in the meantime. The pain is inside the anus, where a solid mass can be felt, so I think that should be relatively easy to kill with radiotherapy without too much colateral damage to other organs in the pelvis. Col Edwards was bold enough to give me his personal opinion that it is not curable by surgery. But it is treatable and as my new friend Lesley W says, we live with cancer. I will probably start radiotherapy with adjuvant chemotherapy on Mon 16 Jan. We will take each treatment one by one. My hope is that radiation and chemo will kill/shrink cancer cells until there are none left. Let's hope that side-effects are as benign as the last lot of chemo.
9 January I travelled into London after two weeks holiday. It was great to see commuting friends and a change to get back down to work, though I have to do everything standing and that makes meetings rather difficult. But I can sit if necessary. I left work at 1130 hours to attend Frimley Park for ultrasound scan of my left testicle which proved that it is simply an accumulation of fluid in the sack containing that testicle. The radiologist seemed to think I could live with this. But I'd rather have it drained — in due course. When he was finished I implored him to shine his ultrasound up my bum where the pain and lump is. It wasn't on his requisition so he was reluctant to do so. But he returned and it took a minute to show that there was no obvious tumour. Anyway it was worth the opportunity. After that I visited the hospital postgraduate library, and with my Governor status was permitted to browse. This gives me access to detailed medical information. I had my broken tooth extracted by my dentist in the afternoon. That required a minor operation to flap the gum and remove some bone to enable the extraction. It is good to get that problem out of the way. The dentist gave me a prescription of antibiotics which I didn't take — at my own risk. After dinner, I attended the monthly meeting of our community centre management committee and performed my secretary role. This was followed by an enjoyable beer.
10 January I did a full day's work clearing the Christmas e-mails. Thankfully nothing important or urgent is looming as I prepare for an uncertain work attendance under the impending treatment regimen. In the evening I made a visit to my daughter Tamsyn's new house for a cup of coffee and chat. Walking the 1.5 miles there and back gave me a good physical exercise and it was wonderful to sit with her and admire her castle. She moved into her 1 bed maisonette over Christmas, and I've enjoyed fitting out curtains, pictures, mirrors etc for her.
11 January I went to see Dr Phan (Dr Essapen's registrar) today with much apprehension, as I still do not know how serious and extensive the disease is. She explained that there is a small tumour in the pre-sacral space at the rear of the pelvis. It is close to nerves emerging from the spinal column and that is why it is not operable. The immediate risk is of spread into the spinal column/pelvic bone and damaging nerves to the legs. Thankfully I have felt nothing wrong in the legs yet. The tumour can be eliminated with radiotherapy and adjuvant chemotherapy. This regimen will consist of 25 radiotherapy fractions spread over five weeks, i.e. 25 weekdays and a course of Capecitabene (Xeloda) tablets, which are not yet approved in England. Dr Phan seemed confident that this would eliminate the cancer and indeed permit me to sit in comfort quite soon. She was less confident that it would not recur. I will worry about that if it happens. The main risks with radiotherapy are long term damage to bladder, prostate and spinal cord, though I imagine the last is easily shielded. I'm now feeling quite calm, and it is good to know that there is a way forward that will start within a week or two. I visited the hospital physiotherapy department and got information about a wedge cushion that looks ideal to ease my sitting problem. Meanwhile I get on with my work and hobbies and enjoy myself. Thank God my appetite is good and that I can enjoy the odd drink though the pain relief pills limit my consumption of alcohol. In the evening I walked to Tamsyn's; she cooked me my first meal in her house and we enjoyed a glass of wine.
12 January I received a letter from the Royal Surrey to go in on Monday 16 January when I will undoubtedly start the chemo and perhaps even get underway with radiotherapy. This evening I played my part in the monthly meeting of the hospital Patient & Public Involvement Forum. It was a good meeting.
14 January A letter this morning from the Royal Surrey offers me radiotherapy Simulator/Planning on 23 Jan and first treatment (LA1) on 6 Feb. 3 weeks is a long time. On the other hand, maybe I am fortunate as reports in our national press this week, indicate that there's a big problem of lack of staff in the UK radiography profession, leading to long waiting times. I first felt the pain in early October. When I see Dr Middleton on Monday 16th I must see if the first treatment can be brought forward to say 30 January and perhaps this is possible if I am prepared to pay (as a private patient). It will be interesting to see what the answer is!!
16 January I know I have family and friends following this saga. I have found it a therapy in itself to record events and my thoughts. It enables me to let friends know how it really is and then I can be normal in passing without having to explain too much, too often. You will be as frustrated as me at the slow speed of developments and indeed the progression of the disease, which frightens me. I wish I could speed things up and bring good news, but sadly procedures take time and I learned little today that is encouraging. Today, Dr Middleton's objective was simply to monitor my condition. He is not leading the next treatment which though seemingly a long time to start on 6 Feb, much effort had been put into getting me that early in the radiotherapy equipment plan. And it is planned to carefully target the cancer which he showed me clearly in a vertical section through the pelvis. It's rather larger than I imagined and when I asked if the radiotherapy would kill it all off, he said "No", just like that. But the chemo adjunct might do the trick. I now know where this constant pain is coming from. When I said that I had expected to start the chemo today, he said that it was part of Dr Essapen's radiotherapy regimen. But he agreed with me that it seemed to make no sense to wait 3 weeks to start chemo. So he is going to ask Dr Essapen to get going on the chemo next Monday 23 Jan when I go for Simulator/Planning. Dr Middleton said that it was unlikely that I would experience any noticeable deterioration in the next 3 weeks. My biggest worry is that I have read that cancer progression in this part of the body is the most painful of all. Today my painkiller regimen was adjusted to 3x600mg Gabapentin and 2x15mg Oxycontin per day, plus Oxynorm as necessary. Is this heavy medication you experts — (click here to email me). Yes things are getting pretty desperate, but I must make another concerted effort to remain positive in my mind that we can eliminate the disease, and I am going to pay more attention to diet from tomorrow. Wouldn't it be great if I got well again. This afternoon my dentist said that my gum wound from the root extraction operation last week is healing well. The wedge cushion with a cut-out at the coccyx arrived today and this evening I tried it out and enjoyed the comfort at our monthly Residents Society meeting, where we review all new building planning applications for our villages with a view to objecting to unfavourable developments. I updated friends, on my condition, and Paul offered 2 books on "You are what you eat", which he delivered to me next day. We had a fascinating discussion about members of the public being trained and certified to use a radar gun to measure and prosecute speeding motorists!!!! I'll be at work tomorrow as usual, but I will leave early. I am fortunate to be a Government worker with sympathetic managers, that will give me all the support and time off that I need. They've had me virtually full time until now, but I plan to work shorter hours from now on. It's hours since I had a pill, so I'm going to have a whisky nightcap.
17 January After a restless sleep, I deliberately slept-in after informing my boss that I preferred to stay home today. I've already had a response from Dorothy S warning me that Oxycontin is a slow-release pill. She recommended placing one in a glass of water, which 6 hours later has hardly reduced. My food usually passes through into the stoma bag in about 6 hours at most and I've been looking to see if the pills I took at 0600 come out (another reason to stay off work). And lo and behold it appeared in my stoma bag at 1300 today 6 hours after taking it and exactly the same size as the pill in water and not visibly smaller than a new pill. I obviously need to revert to the Oxynorm plastic capsules, which fortunately I've got 10 days supply. No doubt I would soon have become aware of the problem in terms of pain experienced. I'm not blaming the doctor. These things are so easily missed, but it is a good example of how you should manage your own health/treatment.
Wed 18 January I was up half the night with an upset abdomen. The ileum was convulsing; nothing was coming out in my bag and there were 3 possible explanations: 1) changed pain medication, 2) ileum blockage, or 3) food poisoning. After eventually emptying the stomach, I emailed work to say I wouldn't be in, and settled down and slept well. Everything seems to be working well now. Indeed I have noticed a reduction in pain from the rear end and I have been able to sit in comfort and read today for the first time in months. This is a massive improvement in my quality of life and lets hope it continues and that my abdomen settles to enable me to return to work tomorrow. This evening I went over to my Social Club to do my annual duty of serving tea and cakes to the Senior Citizens whom we fund to attend the Playmakers Christmas Pantomime Cinderella. Before that I exercised my new cushion and watched Man Utd beat Burton Albion at football. I was pleased to hear in the Club this evening that there is a 48-hour sickness bug going around, so that must be what I had last night (a 4th possible explanation) and I am still feeling twinges in my belly. Home now, following a wonderful pint of Rip Snorter, I'll take a couple of pills and go to bed and enjoy the new bedhead reading lights I installed this morning. I think I will take the rest of the week off work and basically complete a week of rest and thought. In the last 24 hours I have seen a marked drop in pain when I sit, so this has given me a long lost freedom to sit and read. My new medical cushion contributes to this as well.
Mon 23 January I spent Thursday recovering from the tummy bug. I went into work on Friday, caught up on a number of tasks and I planned continuity of my most critical tasks over the next 2 months in view of my potentially increasing absences. I had a good weekend doing things as I usually do, and amongst other things preparing questions for the Simulator/Planning consultation at St Lukes today. My research showed that radiotherapy is just as much a black art as chemotherapy, and potentially a lot more damaging. One discussion group member talking of radiotherapy of the pelvis spoke of myeloid dysplasia which is a bone marrow disorder. Currently there is no cure for this. This might have come from the radiation to the pelvic area. Another message wrote of ".....the ghastly effects of the radiotherapy...". But I suppose there's not much choice. I think I have to accept the best advice of the medical profession. They are not experimenting on me. They are doing what they believe is the next best thing to try and reduce this tumour. I saw Dr Essapen today for the first time, and I got a 4th consultant's opinion from her on the gravity of my position. I will be getting the maximum allowed dose of 45 Gray spread over 25 days. Her major concern is damage to my ileum which invades some of the space previously occupied by my colon and rectum. She said bladder and prostate are relatively hard to damage. She had given some thought to starting chemo early and came to the conclusion that a mild precursor starting chemo on Friday 27 Jan was appropriate, and starting radiotherapy 2 days earlier than had been planned, i.e. on Thursday 2 Feb. They could advance radiotherapy like that because there were 2 irregular early morning vacancies. Subsequently I should get radiotherapy treatment mid-afternoon. I lay flat on my front for 30 minutes while they X-rayed and set up the procedure in the simulator as well as marking a few datum tattoos on my pelvis. I've never had tattoos before!! I'm still hopeful that combined chemo and radiotherapy will make me well again. Would friends and family please keep rooting for me.
Thurs 26 January I didn't expect to have any news before Friday. But I'm staying home today after a bout of sickness yesterday afternoon/evening. It was similar to 3 other occurrences since my operation, that I thought was food poisoning on each occasion. But overnight I've been wondering if they are bowel obstruction (due to adhesions) and perhaps under the stress of wretching/heaving the obstruction clears. Just one of those things I have to live with. I will enjoy a day resting up. Tamsyn expressed an interest in accompanying me to St Lukes tomorrow, and though I don't need help yet, I appreciated her interest and I encouraged her attendance; and she can experience the unique environment. Then I'll treat her to a slap up lunch followed by a game of golf. I will record today that the pain in my pelvis has subsided over the last 24 hours, sitting is less sore, and that has been whilst I was ejecting the medication. Not that I ascribe the improvement to stopping the medication. In fact the removal of the painkillers simply adds to my belief that there is an improvement. I believe that perhaps the tumour may be reducing. I know this is scant evidence of recovery, but it is very welcome. During the day I took a little exercise by walking over to the Community Centre. The weekly car boot sale was in progress as were various activities in the Centre and it makes me feel really proud of the contribution we make to society by managing the enterprise. Rarely do I get the opportunity to see it in full daytime operation. I bought a set of decorative patio lights at the Boot Fare.
Fri 27 January Tamsyn took the day off work and drove me to St Lukes. I wonder if that's because she wanted a lock fitting in the afternoon. I enjoyed her company and she was fascinated by the complexity of all that happened as we got blood taken (Hb 153; WBC 6.17; Platelets 300; Neutrophils 4.11), spoke with the consultant Dr Essapen, had the regimen described by a nurse and collected the various drugs from different pharmacies. It must be very difficult for the infirm or poorly educated to remember it all and take the pills correctly, without a carer or support. I start Xeloda chemotherapy on Monday 30 Jan — 3x500mg tablets whole with a drink of water, twice a day for 5 days during radiotherapy which starts on Thursday 2 February. Starting the Xeloda a few days early is somewhat unusual, but it should sensitise the cancer cells and give the radiotherapy a flying start. We never got that game of golf because of the lock fitting which Tamsyn was well pleased with. This evening I published our church weekly newsletter here.
Sat 28 January This evening I'm speaking at our church Burns Supper but I'd left my preparation until the last minute. So today was rather full. In the morning I visited the Stoma Care Support Group at the hospital and had an emotional reunion with friends, recovered and undergoing chemo and the rest. After lunch I put my mind to composing my Toast to the Lassies. I've never before been on the top table at a Burns Supper. And it was an honour. Click here to see my speech; thank you Jack Carmichael for your help. Click here to see some pictures.
Sun 29 January I installed the patio light set this afternoon and they are rather nice. It's a shame one of the 3 lights didn't function. I did test them before installation. Now that the cable is buried in the ground I will just have to change the bulb. Here is the result a few days later.
Mon 30 January I went into work today at lunchtime, a 5 hour delay after taking the first Xeloda chemotherapy pills; the delay being to gauge whether there would be any nausea/sickness. And it's now 14 hours since the pills and I've felt no adverse change. Indeed I feel great, except in my butt. After such a short time, perhaps it's not surprising that there is no adverse effect, but I think it shows that I will probably not suffer sickness and nausea, as I had a full lunch and was ravenous for my dinner this evening. We'll know for sure soon enough. And if I can reach Thursday without side-effects, we can subsequently blame digestive problems on the radiotherapy.
Wed 1 February I went into work Tues and Wed at 1100 after enjoying a long lie as I deliberately try to get more rest. Still no adverse effect from chemo. Roll on Thursday and start zapping those cancer cells with x-rays.
Thurs 2 February The radiotherapy today was an interesting experience. As for simulation on 23 January, I laid flat on my front in the linear accelerator for a total of about 20 minutes during which they first, positioned my body using lasers and the aforementioned tattoos, before applying 25 seconds radiation from above (through my back), 5 seconds from below (through my belly), and 25 seconds from each side. There was no sensation other than apprehension and no hurt felt today, but apparently it will eventually hurt, as sessions increase over 25 days and inflammation of tissues builds up, mainly at the tumour site I believe. So sitting may actually get worse in the short term. The next radiotherapy session is at 0830 in the morning. I am still experiencing no noticeable effect from the chemotherapy. It was explained to me that the radiotherapy may cause a build-up of skin irritation on the pelvis particularly in the folds between my legs, so I should wear tight fitting pants to minimise chaffing, and apply Aqueous Cream if necessary. Further I should bathe only with luke warm water and gently wipe the skin during washing. Thank you Bill, Jane, Jenny, Ann, Cliff, Peter, Andrew, Janice, Ali, Derek, Boris and Ed for your recent greetings. Ed (jokingly) points out that my English grammar is not up to his high standards, as we both learned at Berwick Grammar School in the 60s! I reminded him I am Scottish and failed the Use of English O-level examination in 1967. I'll revisit my script in due course and rectify the glaring transgressions. Boris, I checked with the pharmacist and she was positive that Xeloda and Oxynorm pills/capsules break down and are absorbed within hours. Thank you all for your support. In the evening I attended the quarterly meeting of the Frimley Park Hospital Foundation Trust Council of Governors. The item of most import was news received today of the agreement of the Secretary of State for Health, Patricia Hewitt to re-examine the decision to move Upper Gastrointestinal cancer services from Frimley Park to the Royal Surrey at Guildford. I think the re-examination is a waste of time. In my view it actually makes good sense to colocate surgical and oncological expertise. I might have benefited from better liaison and quicker initiation of chemo and radiology treatments, had my surgery been performed at the Royal Surrey Guildford, where my chemo/radiotherapy is carried out.
Fri 3 February I had a really good sleep last night but dragged myself from bed at 0630 to get the porage ready for 0700, for I had to take the chemo pills with food at least 1 hour before radiotherapy at 0830. Again the radiotherapy was uneventful. I asked Dr Nahn about the radiation pattern/density and learned that the rays are uniformly distributed in a box shape containing most of the pelvis. I was surprised that there wasn't more focus on the tumour location, but she explained that it was just as important to encompass the surrounding space and lymph nodes as well. Spinal column risk is minimised by excluding the spinal column from both applications of the side beams. I still haven't established whether my stoma spout or bottom margins of the wafer are in the beams. Skin damage in this area would be disastrous. The absence of rectum and colon, and my ability to excrete higher up via the stoma spout, will make the chemo process easier because I won't suffer constipation and it will make the radiotherapy easier because there is minimal digestive organ for the rays to interfere with. I'm fortunate that I can drive myself back and forth to the hospital. It took until1200 hours to complete everything at the Royal Surrey and return home to prepare for the quarterly meeting this afternoon that the CPPIH Forum has with the Frimley Park hospital Board of Directors. Before the meeting with the Board of Directors I visited their library that I've been given access to and borrowing rights as a consequence of my Governor role. I borrowed 2 books on radiotherapy equipment and technology. At my request, this evening we had a visit from "Willwriting Services London" to order an update of our wills, written by me in 1990. I'm not expecting to expire soon, and this is not a sign of me not being positive as we all say. It's just being realistic and neither Linda nor Hayley seemed emotional as we spent 2 hours going through all the details. "Willwriting Services London" will prepare mirror wills for Linda and I for £135 and their Lifetime Service covers revisions and advice on death for a further £540. We are contemplating an additional facility called Nil Rate Band Trust — an effective form of inheritance tax planning to benefit our daughters on the death of the second of us — for a further £495. This seems a wise move before Mr Brown, the Chancellor of the Exchequer, removes this tax avoidance technique. Anybody got any thoughts on this or knowledge of the company. Before going to bed I scanned the radiotherapy books and the technology is a little beyond my ken (for Ed, this is Scottish for knowledge). Dabbling in electromagnetic waves and particle physics reminds me of my earlier comments about the link with spiritual matters, the mind and God. We are harnessing the fundamental principles of the universe (x-rays, photons etc) to modify the cancer process. In addition to the radiotherapy machine using brute force, perhaps our thoughts can make an impression by bending a few rays.
Sat 4 February Sitting down this morning is easier. Perhaps this is an early sign of shrinkage!? I'm looking forward to an enjoyable, relaxing weekend without chemo pills and radiotherapy. Coincidentally the Saturday Mail had a whole page article entitled "Inheritance tax burden will fall on one third of families". This was sufficient to convince us to add it to the contract with "Willwriting Services London" at a cost of £495. This evening I published our church weekly newsletter here.
Sun 5 February I attended church in the morning and read the Times newspaper in the afternoon. The girls' boyfriends came round for dinner and you'll see how important and well-looking I am by clicking here.
Mon 6 February I went into work at 1000 after enjoying a long lie. I browsed in St Lukes library before radiotherapy. I picked up Phillip Day's "Cancer — Why we're still dying to know the truth". This is basically about the value of natural foods to kill cancer cells and has little complementary to say about chemotherapy. So far I must say I've paid lip service to healthy eating, though I have had much fruit every day for months. I need to address my evening meal. And I have a friend giving me advice that includes www.fruitforce.co.uk and www.naturesdefence.com that look interesting. I am determined to change my diet from this evening.
Tues 7 February I tried reasonably hard today on my diet, but it was a very unusual day with 2 school governor meetings.
porage made with 200ml of milk lubricated by 200ml of milk. Water to drink (not
tea or coffee)
0830 - 1030 school governor meeting - glass tapwater
1100 hot chocolate and ginger cake
1300 glass of water in Fountain Centre
1400 vegetable pizza at Pizza Express Guildford without cheese, plus glass of red wine (I have to treat myself occasionally) and glass of water
1800 banana sandwich (2 slices of white bread)
1830 - 2130 (school governor meeting) 6 digestive biscuits and a litre of bottled water
2300 20 cherry tomatoes
Wed 8 February I've now completed the first week, leaving 4 more weeks of chemo/radiotherapy. I quizzed the radiotherapist on the reason for the short (5 seconds) duration exposure from the front and she explained that is because the area of interest is at the rear of the pelvis and they wish to minimise the risk of damage to the intervening prostate and bladder and ileum. During preparation I asked to be shown the extremity of the beam in relation to my stoma adhesive flange. It was marked on my belly, and thankfully it just misses. I've experienced no side-effects except wind in the last two days, but that may be owing to my new diet. I am wanting to sleep more which has been helped by taking the last 2 days and the next 2 days off work. In theory I should be doing some work at home, but I'm not too inclined to do so. My skin is not pinking, nor are any hairs on the pelvis dropping out, though I believe I will lose them permanently. The radiotherapy waiting area is just like the chemo waiting rooms, where people are so friendly and supportive of each other. So far my appointments have been gap-fillers at different times so I met different people each time. As my appointment time stabilises on 1650 for the next 4 weeks, I'll make a few more friends. Today I spent £30 on organic vegetables, fruit and wholefoods which were 90% of my consumption today.
Thurs 9 February Hayley and I normally get up at the same time, and as usual I got up early today to make the porage but there was hardly enough for one. So I had a good wholefood substitute in muesli but with cows milk. I must find the correct alternative "wholemilk". I entertained the people at the hospital with my Union Jack tie and braces. On return I experimented with my new blender and juicer. The blender appears to be useless as it doesnt tumble the ingredients, so I ended up shaking it as it spun! It took me 2 hours to make delicious brocolli, carrot, spinach and turkey soup, but it was worth it. I devoured 2 pints of soup, and for the rest of the day needed only a banana at 1900 when I went to the CPPI monthly meeting.
Fri 10 February I removed a week's stubble growth from my face this morning because I had two important interviews today with my lead consultants. I must persuade them that I'm up for the fight and that I'm keeping in condition and appearance so that they give me their full attention and the best treatment. You know how they look at you and ask "How are you today Mr West?" to gauge your condition. I entertained the people at the Royal Surrey hospital with my Royal Stewart tartan tie and braces. It was a long day in the hospital, starting with an 1100 appointment with palliative care consultant Dr Emma Jones. She spent a very warm 1 hour 20 minutes explaining the pain relief theory and what may be necessary should pain increase as it is likely even beyond the end of the radiotherapy. She reassured me that she treats people that recover from therapy as much as she does the terminally ill. This was the first time I felt that any great thought had been given to my current painkiller treatment. Between us we worked out that it was worth stopping the Diclofenac and consequently the Fastabs indigestion tablet. She recommended increasing the Gabapentin by 50%, increasing the Oxynorm as necessary and stopping the Solpadol and replacing that with paracetomol. I returned to the hospital at 1500 to see Dr Essapen the consultant oncologist to review the first week's blood results and my general well-being which was fine. I note that the platelets count is low at 1.33, but this is still marginally within spec. I had the 7th radiotherapy dose at 1700. I asked if my anus was in the field and the radiologist reassured me it was. She didn't appreciate that I was hoping the opposite as the radiation is liable to irritate and inflame this already chaffed point that makes walking uncomfortable. After a wholesome meal I went to bed early.
Sat 11 February I've never had so much organic and healthy food in one day. Jackie and Paul kindly got me started with lists of yummy foods and it wasn't until I started looking today that I discovered a reasonable variety of such foods on the supermarket shelves. But that now puts me out of synch with the rest of the family and I have to prepare meals myself and/or eat at different times. I tended to snack all day long on nuts and fruits. My main meal of soup was shared by all. I'll try and convert them to this new food menu. This evening I published our church weekly newsletter here.
Sun 12 February This is my day of rest. I enjoy going to church for the fellowship. They are a wonderful group of people. And it's my only bible reading of the week I'm afraid. It reminds me of how we should lead our lives and it comforts me a great deal in these difficult times. My other reminder is a wooden Jesus cross that Tear Fund sell. The long leg is perfect for holding in one's hand going to sleep and I keep looking for it in the night if it strays. Otherwise I'm not well versed in religious theology, despite a lifetime of attending church. I slept all afternoon. In the evening. We celebrated Hayley's 24th birthday at Pizza Express Camberley. Then I prepared last month's Community Centre meeting minutes and distributed them by email ready for the meeting tomorrow night. Thank goodness for email, though I must perform better next month.
Mon 13 February After a long lie-in I went into work today and cleared one critical action before departing at 1300 to go to the Royal Surrey for radiotherapy. It is half-term this week and the train into London was crammed full of children going sightseeing. One in particular across the carriage was coughing and spluttering and by the time I'd got to the office I knew I'd contracted my first infection (in the throat) since early April 05. When I got to the hospital I found they were running 40 minutes late which was getting critical for my subsequent dental hygienist appointment at 1720. I mentioned this to the staff when I arrived early at 1500. Later I regret discussing appointment times with my fellow patients in the queue, because I queue-jumped thanks to the radiotherapy staff bringing me forward. But I salved my conscience by explaining the scenario to them before I went in. I made the dental appointment with time to spare. Whilst at the hospital I went to the chemo department and explained about the infection. The Sister immediately took blood and later confirmed that my blood levels are sufficient to fight the infection. The hospital blood analysis department is very responsive. Now this evening I attended the monthly Mytchett Community Centre committee meeting and I had a pain-free 2 hours sitting; just as now sitting here at home the pain in my rear end on sitting is virtually nil. This looks promising.
Tues 14 February Overnight my throat infection was confirmed and I awoke with a mild headache, dizziness on standing and loose catarrh down to my lungs. I saw the Sister at the hospital in the afternoon and she advised me to go in if the symptoms worsened. So I missed work and this is beginning to bother me because there are one or two critical jobs that I had planned to do this week. But my boss seems to have things under control with alternatives. I spent the morning in bed and the rest of the day just lying around. I have good news that for the first time in 4 months, for the last 36 hours I can sit at this PC without a pain in my butt. My drug regimen was changed last Friday, ramping up over 6 days the nerve drug Gabapentin, and I think that must be the reason. The radiologist today stated categorically that it wasn't the radiotherapy that caused pain relief, as this will actually cause pain as the treatment proceeds. So that reinforces the drug theory.
Thurs 16 February I've had a restful 2 days recovering from the cold. I still managed to do an important job for the boss each day, which makes me feel less guilty about all my time off these last two weeks. This evening I got out to a public meeting and presentation by Frimley Park Hospital on Infection Control. I have long advocated a complete culture change by nurses, visitors, patients and doctors, practicing more hygienic procedures, such as those in the more sterile operating theatres and recovery rooms — see 6th bullet against 13 May 05 update above. I made a small speech to this effect this evening and addressed the question to the hospital Infection Control Consultant, and he agreed and stated that they had learned that this was the solution during the last 4 weeks as they fought a serious outbreak of Winter Vomiting Virus (this has been experienced in hospitals across the UK). The hospital introduced bay, then ward isolation, and meticulous cleanliness procedures and quickly got the outbreak under control. But I bet they don't actually do much to change the culture. What is required are physical barriers like locks on ward doors, limited visitor times, maximum 2 visitors at once and visitors wearing gown and gloves, not to mention better staff cleanliness. This isn't necessary across the whole hospital. It should apply to the necessary proportion of wards to accommodate the most susceptible patients. Without such visible hurdles, nothing will change and our deaths from hospital acquired infections will not improve. I am on the Council of Governors of the hospital, so I am in a good position to push home my views when this subject comes up for review by the Council, as it must surely do if the Infection Control Consultant is honest when he says they learned the solution these last 4 weeks. Surely the Board of Directors will be consulting the Governors with this newfound solution. It's actually just going back to the rigorous procedures they had 30 years ago. It's not good enough to claim that our infection rates are better than the majority and blame the problem on anti-biotics as the hospital Non-Executive Director in attendance was doing this evening. The problem is with us. Anti-biotics are not going to go away. It requires positive action to improve cleanliness and isolation, to prevent infection gaining a foothold and spreading.
Fri 17 February I felt better from the cold infection today. My general body health is as good as ever. I'm eating well and maintaining my weight. The problem continues to be the pelvic pain in two places — higher up in the sacral space and lower down in the anal canal near the anus. My interview with Dr Jones today reviewed the revised drug regimen and its effect on these pains. During the last week, my nightly sleeping difficulty with the pain in the sacrum had cleared up and pain on sitting was less. So she was well pleased that we'd simplified the drug combination to this effect. The problem that I had peeing until last week has eased this week. She thought that this was the result of some shrinkage of the tumour as it bears on the prostate. After discussing potential progression scenarios of the disease, I agreed with Dr Jones referring me to my district palliative care team, who will contact me within a couple of weeks to arrange assessment, though this would not be immediate as my symptoms are not serious. I thought it is best to tee up these contacts even if I never need to use them. If things do take a turn for the worst, setting up home support from scratch could take a few weeks, just when I need it most. My next interview with Dr Phan confirmed that blood levels are sufficient to continue the combined chemo/radiotherapy, even though the graph shows a dive. No imaging on the linear accelerator at this point in time can indicate how effective the treatment is at reducing the tumour size. Only my daily and cumulative reaction will give us clues, but that will be confounded by inflammation which will build up and continue weeks after completion of radiotherapy. Definitive evidence of cure/remission will not be available until CT and MRI scans about mid-April, 6 weeks after completion. Click here for a layman's guide to oncology/radiotherapy and the different types of imaging used for diagnosis. I completed the 12th radiotherapy fraction of 25 today. I'm looking forward to the weekend. This evening I published our church weekly newsletter here.
Tues 21 February I had a good weekend. Last evening I had a choice of two meetings and the Residents Society had to come first. We discussed TAG's application to double weekend flights into the local Farnborough airport. We will object strongly to this. And then we had an interesting sequel to last months story about residents measuring car speeds with a radar gun. Already the initiative has started in the village, with a team of residents manning the post, on a rota, on Coleford Bridge Rd in their yellow jackets. We await results with interest. I arrived at the hospital for my 1500 music therapy appointment to be told that there was no such appointment, but they substituted with a session of craniosacral therapy which was very enjoyable. I'm still keeping well after 14 radiotherapy fractions, but the nurse ominously warned me today that I should start experiencing soreness between the bum cheeks and on the scrotum, because of the body irregularity on this lower margin of the x-ray field. Apparently, on other flat surfaces normal to the x-rays, the rays pass a few centimetres into the body before starting to be absorbed. The scrotum and bum slit present irregularities that result in absorption as soon as the rays hit the skin. Coupled with my internal pain in this area, I might be finding walking a little difficult in the next few weeks. But I'm managing for the time being and this week I get into a regular pattern when my radiotherapy is at 1610 hours every day. However, both days they were running 50 minutes late. I've been to work Monday and Tuesday mornings. After a long lie in, I drove to Guildford and parked in the hospital car park. A weekly season ticket is only £3 from one special machine that they do not advertise except to radiotherapy patients. I then got a £1.80p bus return to Guildford railway station. I then purchased a railway return from Guildford to Woking which picks up my normal route to work in London, for which I have an Annual Season ticket costing £2299. After reversing the sequence, I can get home quickly after radiotherapy by jumping in the car. I managed to clear my inbox both days and carry out one important job. Owing to a clash of appointments, today I regret missing meeting a wonderful friend JV, whom I haven't seen for months.
Wed 22 February I'm now into a daily routine that is quite enjoyable. Getting up when I feel like it, though I'd like to stay in bed a little longer than 0730, but I've really got to get into the office before 1100. I have a leisurely breakfast of porage with Hayley; drive to Guildford at the tail end of the school run so the roads aren't too busy; find a hospital car park spot that can be quite difficult after 0900; get a cup of chocolate from a machine in the hospital; call in at the hospital shop for a newspaper; board a bus to the station; get another cup of chocolate from the station platform cafe; I found the 1002 train today nearly empty so I minimise the risk of catching infection and it is quite a stress-free journey. I buy some healthy food from M&S on Waterloo concourse for a feast (with red wine) on my return train journey in an empty train in the afternoon. Radiotherapy was again 50 minutes late, but I got home by 1730 and had a rest before dinner. I had received a few emails from friends that are always welcome and I endeavour to reply almost immediately and this doesn't take much time. Please keep them coming. Another boring but good day. I am not getting stabbing pains up the anal canal so often now, so maybe there is some shrinkage. I'm not conscious of any skin irritation or hair loss, except on the scrotum which is redder than usual but not itching or anything like that. I never asked what the effect would be on my sperm. It didn't matter. What mattered is that we encompass the volume where cancer cells may have spilled, and my scrotum was a strong candidate. I'm certainly not despondent about anything that's happening to me at the moment. Long may it continue to get better. This evening I published our church weekly newsletter here.
Thurs 23 February I have already told one or two of you how I screwed up today and it gives me a few things to write that I am embarrassed to admit. I did the most foolish things that knocked on and resulted in an unsatisfactory feeling. The problem originated when I failed to look at my diary and plan my day. I decided to have an extra long lie in, setting off at 1100. From Guildford I got the wrong train that meant I got to work at 1330 (I usually leave work at 1330 for a leisurely journey to Guildford). I booted up my work computer to be reminded I had a dentist filling appointment at 1410 at home!!! Just then I got a visit from a dear friend Angy who, noticing I'd logged on, arrived at my desk to present me with a beautiful framed picture that she'd painted herself. It wasn't the best of times for me to thank Angy properly, as I sorted out what had become a chaotic day, but I'll thank you properly soon Angy. I next phoned in and rearranged the dentist appointment. The receptionist went to see the dentist for me who said he wouldn't fine me. So that resolved the first problem. After I had put in half an hour's work, by the time I got to the hospital there was insufficient time for me to give blood which was necessary for my Consultant appointment tomorrow. Anyway the rest of the day went to plan and the radiotherapy was even on time. Because my bum slit is getting sore I asked the nurse if I should wash off the cream I'm using before radiotherapy. She said it didn't matter so long as it wasn't thickly applied. But then she went into her secret cupboard and gave me a strange shaped gel dispenser, saying this is what I should be using over the anal slit and all over the scrotum night and morning. Why didn't they tell me that earlier?
Fri 24 February My boss had requested me to be in early today to attend a meeting at 1000 hours. So after parking at the hospital at 0800 hours, this was too early to give blood. So I proceeded to work, finished the meeting and set off for Guildford at 1200. I gave blood at 1330 and thankfully the result was through in time to clear me for another week's treatment. I made another mistake by failing to count my remaining pills the evening before; even forgetting to consider it in the consultation with the Consultant, but it turned out I have just sufficient to see me through to next Friday. So it all turned out OK but it is unlike me to be so disorganised. The blood result is included above. I had my 17th fraction of radiotherapy and I'm looking forward to a weekend without chemo and radiotherapy. This evening I attended the local Conservative Branch AGM and enjoyed the socialising in the bar afterwards. Tomorrow morning I will attend Bags of Support (BOS) at Frimley Park hospital and meet up with fellow sufferers, take part in the quiz entertainment and enjoy the socialising afterwards. Interestingly I have noticed that my repetitive strain injury in my right shoulder, has completely cleared up since I have been doing so little work and browsing on the computer these last few months.
Sat 25 February The BOS social was good, though my team came last in the quiz. After lunch I relaxed in my summerhouse as it got the last 2 hours sun from 1200 to 1400. It was wonderful. The light of the world. One of God's greatest gifts to us. I'm keeping very well, though I'm wondering what a new pain in my tummy is. I've been burping more and this pain is different. A 4 hour visit to Frimley Park Accident & Emergency in the evening diagnosed a kidney stone in the left ureter, but because urine was managing to bypass the stone, surgery was unnecessary. In addition there is a stomach/indigestion issue, so maybe the radiotherapy is doing some damage there.
Sun 26 February It's 1300 and I am feeling awful as I have a kidney stone descending the ureter to the bladder. I can hardly move and I'm going back to the hospital shortly, maybe to stay in and adjust the painkilling to be more effective. They predict that this could last up to 4 weeks as the stone (about 2mm diameter) moves down as it did 2 years ago.
Mon 27 February It's now Monday and I cannot concentrate long. I have had the most awful weekend. First a kidney stone descended over about 36 hours, i.e. got flushed out, but another problem developed on Sunday. I can hardly move for the pain around my stomach. I don't think its owing to the cancer; more likely the drugs I'm on. The good news is that for the first time in 5 months, I've been able to sit in comfort. But I have a dilemma — the pain around my stomach is very bad and the doctors may not want to continue with chemo/radiotherapy this afternoon. So I got an emergency appointment with my GP at 1230 and he telephoned the Royal Surrey with an opinion that chemo/radiotherapy should continue. Linda drove me to the Royal Surrey and on arrival, the Royal Surrey checked with one of Dr Essapen's registars and by 1610 Royal Surrey were prepared to proceed with radiotherapy. I was so pleased to be able to continue with treatment. That presented a small problem that lying face down in the radiotherapy machine was excruciation owing to the stomach pains which were worst when pressure was applied, when I moved and that included breathing. We managed though.
Tuesday 28 February Having come to the conclusion that the stomach pains were the result of a stomach upset, hopefully not an ulcer, I concentrated on getting the pills Diclofenac (this relieves pain and inflammation at the tumour site) and Lansoprozole (this is very good at reducing stomach acid production), in correct sequence and the pain is subsiding. So after a troublesome 4 days, I am on the mend in more ways than one — it seems I've passed a kidney stone, stomach pains have become tolerable and it seems to me that there must have been shrinkage of the tumour resulting in my ability to sit down for the first time in 5 months and I cant remember a stabbing pain up the anal canal for many days. It's remarkable how one fails to identify the time at which healing actually starts/finishes. However I am left with the problems of balancing when standing and drowsiness which brings on undemanded sleep if I am unoccupied. I believe that this is an accumulation of the effects of chemo/radiotherapy and a known side-effect. So I don't anticipate working again this week.
Friday 3 March I have a few emails awaiting my answer. I apologise for the gap. As you might have deduced, I'm not feeling much like writing. Though I'm physically improved, my mind wanders, lacks concentration and I sleep most of the time. I have eaten little for a week. I don't feel sick. Chemo finished this evening so maybe that will instigate an improvement. I've just had an emotional hour as I realised I failed to ask for a Neurontin (Gabapentin) prescription when I saw my consultant Dr Essapen today. I think it is atrocious that they don't manage this for me especially the state I'm in. But my wife and I resolved that using logic, approached weekend District Nursing Team and they gave me GP Out-of-Hours telephone number. I was assured that the system would gear into action and I'd have the pills that day. They run out Sunday morning. My blood test results are haywire. Because I dont understand where the decimal point is, I could guess an order too much or too low. They are concerned about my general wellbeing. Dr Essapen has arranged for me to receive 2 units of blood at 0800 Monday morning. Further she has referred me to a dietician. Only 3 more days radiotherapy remaining.
Saturday 4 March I'm feeling very fragile. This morning I published our church weekly newsletter here. My wife is picking up the prescription.
Sunday 5 March I'm bedridden and feeling no better. Tamsyn will take me into Royal Surrey hospital tomorrow morning for 2 units of blood transfusion. That may make a difference. But in anticipation of another week in bed, I really would appreciate a visit if anyone has the time. Check out on 01252 549881 before arriving at 177 Mytchett Rd.
Friday 10 March I haven't felt like writing for many days. I am dictating this into DragonDictate as it takes less effort. So much has happened. The important thing is that I am now going to get better. When I sit, there is no sign of the tumour creating pressure on sacral nerves or prostate, so I can sit comfortably for the first time in many months. This treatment has obviously ravaged my body. Despite the two units of blood on Monday, I have felt little better all week. I cant concentrate on anything for long, I'm slightly dizzy on standing and I feel sore all over. I have managed to do what was essential, like attending radiotherapy until Wednesday when thankfully it finished. I attended the dentist for a filling on Thursday. I went to my GP this morning. He was unable to give me anything to help my situation other than natural healing and the advice of a nutritionist, that I am still awaiting the appointment at the Royal Surrey hospital. But I have forced myself to eat at all mealtimes, though my intake is much reduced. I have become concerned about tightening of the muscles in my calf's so today I walked back 1 1/2 miles from the doctors ( I stopped at the church for a coffee and DSS's for another coffee, as it has been a bitterly cold day) and that will have given me some very good physiotherapy. I also walked back the 1 mile from the dentist yesterday. I am not despondent about anything. My body has resisted any infections it might have encountered in the last few weeks. Thank you to those that I have not replied their e-mails in the last few days. I will catch up just as soon as I have the stamina and can think clearly. Following my kidney stone episode two weeks ago, I have already had an Intra Venous Urogram on Monday that proved that my left side kidney system is clear of stones. I hope the right side doesn't start to throw stones out at the moment. And another battery of tests has been programmed to test bladder functionality. This is not just consequential to the kidney stone episode. I think it is to assess whether any damage has been done by the radiotherapy. So has anyone any ideas on how to accelerate this healing process. Even if you just send me a greeting that will help.
Saturday 11 March This afternoon I published our church weekly newsletter here. Apologies to those (Gordon et al) who read at work. I'll try to get them out earlier next week. In fact I should be feeling a lot better by then.
Sunday 12 March As the Secretary, I produced the minutes of last month's Community Centre committee meeting and sent to members. Apologies again for lateness and I shall miss the first meeting for awhile tomorrow evening.
Monday 13 March A quick update. I'm not feeling any better yet. Actually I have a new problem with "radiation burns" between my legs. This is 3 patches, each 1 square inch, that have no skin, just like serious sunburn. It makes sitting and walking difficult. I phoned the hospital and the radiotherapist said this was an expected outcome, and provided I keep it clean and apply the gel it should repair in a week or two. I've made an appointment on Wednesday for the District Nurse to inspect my care. Roll on two weeks. With the doctor's agreement I am cutting back on the painkillers. I've stopped the Oxynorm and I've cut back the Gabapentin from from 2700mg to 1800 mg per day. This is slightly unnerving because it may expose underlying damage or the continued presence of the tumour. My weight has dropped to under 10 stone, which is my ideal weight so I'm pleased to have lost my tummy fat. Thanks again for email greetings.
Thursday 16 March I haven't felt much like emails etc all week. I'm still suffering the general effects of the chemo/radio treatment. This evening, Tamsyn insisted on taking me to hospital to investigate a sore red mark, maybe DVT, on my inner right thigh. As usual my hospital A&E processed me wonderfully, no doubt giving me preferential attention because of my debilitated state. Following an ultrasound test, the consultants advised that I have Superficial Thrombophlebitis and that there is no blood clot, only an inflamed vein that is about 6 inches long. Reading the article suggests this is more than "superficial", and requires further treatment to prevent spread to the deep vein system. I must ask my doctor to refer me to a consultant. I hope this doesn't delay my attempts to get back on my feet.
Friday 17 March I visited the hospital for urology tests. I was required to arrive with a full bladder, but I was a little apprehensive about that so planned to top up at the hospital. After an hour and drinking 2 litres of water I still didn't feel full. The Sister needed to go so she decided to do the first test and measured only 107ml of urine in the bladder. My full capacity was about 400 ml 3 months ago. So I learned a lot today, in that I'm dehydrated and that may be part of the reason for feeling so low. So from today I'm deliberately going to drink loads. Fortunately she can fit me into her clinic on Monday afternoon.
Saturday 18 March I am pleased to say that the radiation burns have finally sealed with new skin and I can sit and walk comfortably again. This morning I published our church weekly newsletter here. Apologies to those (Gordon et al) who read at work. I'll try to get them out earlier next week. In fact I should be feeling a lot better by then. I'll reply to emails soon.
Sunday 19 March Drinking loads of water has certainly helped me get out of bed, but I'm slightly worried by the increasing pain in the vein. Fortunately it is near the surface and the pain can be relieved with Ibuprofen Gel, rather than restarting anti-inflammatory pills.
Monday 20 March It's definitely been a good day today. I am back in the land of the living. It's amazing what a difference a day can make, and I wonder how much rehydration had to do with it. The radiation burns are completely healed over. I drove myself to an appointment this morning with my GP. He was knowledgeable on superficial thrombophlebitis. He examined my area of concern in my right calf and concluded that I may have an inflamed vein there too. He didn't recommend any medication except anti-inflammatory painkiller pills like Diclofenac. But I'll manage with the gel. If the pain gets too bad I will start to take the Oxynorm tablets again. The doctor warned me that I am at risk of a blood clot travelling to the lungs, and at the first sign of shortage of breathe and/or coughing up blood, I should immediately get to Frimley Park hospital. I'm fortunate that its only 2 miles distant. After lunch I drove to the hospital and successfully completed Friday's aborted bladder tests. Sister Bibby was pleased to see the improvement in my health and I thanked her for being instrumental in diagnosing my dehydration. This evening I watched the modern drama on Lady Chattersley's Lover trial in the 1960s. I found that stimulating — another sign of my recovery! I'm signed off work for the rest of the week and am looking forward to a rapid return to normal strength and health. I'm considering travelling North with Tamsyn to visit my Mum at Berwick at the weekend.
Wednesday 22 March What a wonderful day as I continue to feel normal. I drove to my second follow-up with my consultant clinical oncologist this morning. As usual I saw a new Registrar but she was very good and it's useful to get a third/fourth opinion. Like my doctor she said the thrombophlebitis in the leg was a common risk following pelvic surgery and would require careful monitoring. She advised that I should start taking Diclofenac anti-inflammatory pills to calm and heal the leg veins. Like me she was pleased the chemo/radiotherapy had had a marked effect and will continue to do its work for a few weeks more. So they don't want to do a whole body CT scan and pelvic MRI scan until the beginning of May. On leaving the hospital I visited my school The Grove to let them know I'm back in action. Mrs MacLachlan invited me into the Language Unit for an hour where I participated in the children's learning. It was fascinating to see the range of children's ability and to compare with my own primary education in the 1960s. It was daunting too to think that as a Governor I have a responsibility to conduct formal classroom visits and report back to the Governing Body. I don't feel qualified, and while we are not assessing the teacher's performance, I find it difficult to understand exactly what we are assessing. I think it must be the teacher's lesson planning and execution of that plan and the children's reaction, i.e. lessons learned. But this surely involves the teacher's performance. This requires prior communication with the teacher to know the lesson plan and there to be an understanding of my objectives. As the specialist Governor responsible for Information & Communication Technology, I must plan a formal classroom visit. Leaving the school I had a notion for a pub lunch at the Miner's Arms and enjoyed a massive bowl of soup with bread, but I didn't manage to finish the half pint of real ale, my first alcoholic drink for weeks. Arriving home I decided to book my ticket to Berwick leaving Kings Cross tomorrow, returning Sunday. It was too difficult to involve Tamsyn but I promised I'd pay for her to go see Gran at Easter. This afternoon I had a nap and then published our church weekly newsletter here — a big improvement on the last few weeks, eh Gordon? I regret I shall miss yet another Sunday worshipping amongst my friends at the Garrison Church Aldershot. I made my first venture visiting Tamsyn this evening to watch The Apprentice. I still couldn't stomach a small whisky, but I'm sure my taste will return.
Sunday 26 March I got back from Berwick this afternoon, after an enjoyable break with Mum, and meeting up with my brother Andrew and his wife. It was nice to get together on Mothering Sunday weekend. Here are a few pictures taken from Spittal Point (the first 5) and the remainder from the train crossing the Royal Border Bridge leaving Berwick. This evening I'm getting my clobber into order to return to work tomorrow. I'll need to get my mind back into gear. But first I will enjoy a wonderful sleep in my own bed. My health has continued to improve and the only sign of my ill-health is a slight shake in my hands as I do things and I can feel that my strength is not recovered yet. I'm eating almost at normal capacity again. Thank you to all my friends who supported me through the last few weeks. This evening we all enjoyed a Mothering Sunday meal cooked by Tamsyn and Hayley at Tamsyn's home. Here is a picture of me taken this evening.
Monday 27 March I went in an hour late and left work an hour early. I must have walked a good few miles, visiting friends, and that quite tired me out. Even at lunch, reading my newspaper over a pizza, I was nodding off. So I was glad to rest for 2 hours before dinner. On Fri 3 Feb I wrote about our Wills — "We are contemplating an additional facility called Nil Rate Band Trust — an effective form of inheritance tax planning to benefit our daughters on the death of the second of us — for a further £495. This seems a wise move before Mr Brown, the Chancellor of the Exchequer, removes this tax avoidance technique." Last Wednesday, in his budget, the Chancellor made a raid on Inheritance Tax Trusts and I have been patiently reading the letters to the Times, as the details of the budget changes are clarified, to see how Nil Rate Band Trusts are affected. I had sat on the draft Wills and paperwork since 3 February as I had been incapable of progressing them. I am feeling good about that and also the emerging news that Nil Rate Band Trusts are not affected, so it would seem that we should proceed to complete the process. Today I cut the Gabapentin back to 900mg per day — one third of the dose I was taking a week ago. This seems to do the job adequately.
Tuesday 28 March Apologies friends as I give more medical news. But that's the main purpose of this website, to record the journey interspersed with pieces showing me leading a normal life. This morning I gave a blood sample for PSA analysis for my consultation with urology specialist Mr Palfrey on Thursday. As well as my kidney stone problem, he is interested in the possibility that the prostate has been invaded by the cancer. I had bladder diagnostic tests done in the previous 2 weeks and this week I'm recording my urine output over 3 days. I think all is well. Today I was given 28 April for my next major milestone — the enhanced chest, abdomen and pelvis CT scan looking to confirm that there are no metastases to lungs and liver in particular. I will hopefully be able to arrange the pelvis MRI scan to occur on the same day. Then a week or two later the hospital multi disciplinary team will diagnose my situation. After giving the blood sample, I did half a day's work today, and felt less tired than yesterday as I did less walking about. I fitted in a 2 hour school Governors Resources Committee meeting. I saw teacher Angela (she leads on ICT) and tentatively arranged for me to do a formal ICT classroom visit after the Easter holidays!!!! This evening I arranged to go away next weekend to Wells-Next-The-Sea, Norfolk, kind courtesy of a dear friend.
Thursday 30 March At Frimley Park hospital today I was expecting a review of all the urology tests that I had done in the last couple of weeks. And had Mr Palfrey seen me, he would have covered the lot. However, his registrar Dr X was insistent that this was a kidney stone clinic and implied that all he was paid to do was examine my x-rays for stones. And he couldn't see a stone anywhere on either side. That is good news but surprising and suggests that I unknowingly passed the 2 mm stone that was in my right kidney last December. Despite his protestations, I guided him round my condition and he reluctantly reviewed the various urology test reports ordered by his boss Mr Palfrey, and advised me that nothing untoward was found. He looked at my swollen testicle sac, confirmed that the ultrasound test had revealed no malignancy, and advised that the safest treatment for the infection would be anti-biotics prescribed by my GP. To syringe would risk infection. Finally I asked for the result of the PSA test done on Tuesday. He looked in the file and said it wasn't there. I said how about the computer sitting in front of him. He mumbled that wasn't possible. By this time I was getting quite annoyed and I demanded to know the result of the PSA test. He protested that there were other patients waiting to be seen. I think I banged my fist on his desk saying that I wasn't leaving without that test result. He summoned a nurse and she returned less than a minute later with the figures. The reading was a good 1.7 compared with 3.3 in December and 8 in November 2005. He commented that the high value in November was probably a consequence of the stress created by the tumour as it grew in my pelvis. So my persistence paid off and I eventually got the results of all the tests. I really should make an official complaint to the hospital, so that other patients get a more joined-up consultation when it is called for. This is an illustration of how one would best manage one's own health, coordinating the complex services provided by our National Health Service. I visited the Scanning Centre with the objective of arranging my pelvic MRI scan on 28 April, the day of my CT scan. After 15 minutes, a nurse eventually fixed my MRI scan, on the same day. I am not confident I would have achieved this good result without my personal intervention. Again this shows how one can help oneself with a bit of knowledge and a reasonable approach. The inflamed vein in my leg has calmed down and causes me no problem since I enveloped my thigh in a tubular bandage that negates the pain that flapping trousers were causing. I worked this afternoon and now look forward to 4 days holiday including a trip to the Norfolk coast where I've never been before.
Sunday 9 April I've hesitated to update for over a week as I have struggled to overcome flu that started with a vicious tummy bug that has caused periodic cramps across the belly all week. Coupled with periodic flu symptoms it has made me lethargic and put a damper on my recovery. It was reassuring to learn that a colleague at work is suffering from the same symptoms and that there are many cases nationally. Nonetheless I got away to Wells last weekend with Tamsyn and we had 2 sunny days to look around the wonderful old town and its harbour. And the exercise and sea air were a great tonic. On Tuesday I attended a consultation with a dietician at the Royal Surrey and I came away with a dietetic action plan, that I'll get onto when this bug clears up. I worked Wednesday, Thursday and Friday but I've spent this weekend holed up at home. I did manage to attend church today for the first time in about five weeks. Work tomorrow is looking unlikely. It won't be long now until I'm fully recovered. I am getting no pains from the pelvis and I can sit in comfort, so I really can't complain.
Tuesday 25 April Most of the last two weeks have been spent resting at home/hospital. I've just been discharged from hospital after 5 days treatment/monitoring for a pulmonary embolism (PE), that is two small blood clots in the lung. I had no feeling of pain at any time. We are very fortunate that the heart pumps blood to the lung capillaries as the first port of call (for oxygenation) before circulation to brain etc. The lung filtered the clots. The only symptom I had, was coughing up minute quantities of blood, which my doctor had warned me to be on the lookout for following the superficial thrombophlebitis last month. I wrote on 16 March, "this is more than "superficial", and requires further treatment to prevent spread to the deep vein system. I must ask my doctor to refer me to a consultant." I wonder why my doctor didn't start anti-coagulant treatment then. It might have prevented the clots forming. On examining the chest x-ray, it was my oncologist who had me admitted to hospital immediately. The treatment is a 6-month course of anti-coagulant, Warfarin (2mg per day). Otherwise, I'm still suffering the (mild) effects of the tummy bug that started nearly 4 weeks ago and lack stamina as the day goes on. I'm eating well especially in hospital where the food was scrumptious and I really enjoyed the long rests. I think the lack of stamina is related to the tummy bug, rather than my recent cancer therapies. I am still confident the chemo/radiotherapy was effective and we'll find out more on 17 May when my oncologist will deliver the results of the CT & MRI scans to be carried out on Friday 28 April. I'll go into work for a short day tomorrow and take Thursday and Friday off, when I have hospital clinics to attend. Our NHS is not getting a good press at the moment, but I must say that I believe Tony Blair and Patricia Hewitt when they say our NHS has never been better. I am getting swift and uncompromising treatment for every problem I encounter. I think it's worth a mention here that my stoma/ileum has functioned perfectly through all my problems. Indeed, the lack of a colon has had the benefit of no constipation, which can be a very troublesome problem. One thing that struck me in hospital as I saw elderly men needing private nursing care, was how I might cope with my ileostomy in later life. That's a problem I'll have to deal with at the time — I know how to demand specialist stomacare nurse support. But I fear others might not be so fortunate. Thank you friends for your email greetings.
Friday 5 May I wish I had some good news to publish, but my upset belly continues to affect my appetite and general health. In addition, I've developed a sore right shoulder, that keeps me off the computer keyboard. I'm sure it wasn't use of the computer that caused it. So I have two reasons to skip work, though I've gone in once a week to check for critical emails.
I enjoyed life to the full (until the recurrence of cancer in the rectum in October 2005). My problems were before the operation in 1994; and I thank God for giving me back my life twice so far and for the expertise and skill of the staff of Frimley Park Hospital and now St Luke's Cancer Centre, Royal Surrey Hospital for keeping me under observation and comfortable. Now I rely on their expertise along with the support of all my friends to cure me of cancer.
We would like to share the remainder of Dad’s journey:-
Sunday 7 May Dad’s upset tummy and lack of appetite continued, although he still managed to drive round to my maisonette for a cup of tea and a chat in the afternoon. He brought with him a gift – a “Steam Bee” electric steam cleaner. He took great pride in helping me with my new home. That evening I visited the family home for Sunday dinner as usual but for the first time that I can remember Dad didn’t join us explaining that the smell of food was making him feel nauseous (looking back this is the point at which Dad started to deteriorate at a very fast rate).
Tuesday 9 May Although Dad still showed no sign of improvement he insisted on making the journey into central London on Tuesday afternoon. On his return home he told Mum that he felt “lousy” and Mum noticed that he had developed a yellow tinge to his skin – a jaundice appearance.
Wednesday 10 May Dad received a call from the Warfarin Clinic at 8am informing him that his warfarin level was too high and that he should stop taking the tablets immediately (we are still not sure whether the high warfarin level in Dad’s blood contributed to his decline in health during the following days). I visited Dad to watch our weekly evening programme of The Apprentice and he was very lethargic lying on the sofa and still didn’t want to eat anything. With lots of nagging from me he reluctantly ate a caramel shortbread which I hoped would help him regain some energy. When I left to go home he didn’t have the energy to stand up and say goodbye which was very unlike him.
Thursday 11 May Concerned about Dad’s lack of energy I called him from work to see if he was feeling any better. He was not himself and was very short with me over the phone. It was like he didn’t even have the energy to hold a conversation and when I suggested calling the doctor or taking him to the hospital he repeatedly kept insisting that he was fine.
Friday 12 May Hayley went to call on Dad to get up at 8am as he had requested the previous evening. He proceeded to sit up but didn’t have the energy. Mum and Hayley tried to help him out of bed but he didn’t have the strength to support himself and couldn’t make it down the stairs. At this point Hayley called 999 and Dad was taken to A&E at Frimley Park Hospital where he was immediately admitted to the Resuscitation Unit for numerous tests, scans, x-rays and ultrasounds. One of the nurses reassured us that the ultrasound had shown promising signs that the tumour had not spread through the pelvic area to the surrounding organs (he was due to get the official results on the 17th May 2006) – this gave us all hope that Dad would pull through. During the afternoon he was then moved to the High Dependency Ward where he was monitored and observed. At this point Dad had become delusional (maybe a side effect from all the drugs and painkillers or maybe an early symptom of Septicaemia – we don’t know). The nurses kept saying he had an infection but wouldn’t elaborate as to what it might be.
Saturday 13 May We all visited Dad at the hospital first thing in the morning and he appeared to be showing signs of improvement (sitting up in bed and able to hold conversation). The nurse informed us that he had asked her to make a phone call for him to send his apologies for a meeting he was supposed to be attending that morning so he was in a much better mindset compared to the previous evening. We spent most of the day by his bedside but he kept insisting that we “go home and enjoy ourselves”. I firmly believe he thought he would be home in a couple of days, and that he thought we were fussing over him un-necessarily. We popped home for a short time to give Dad some time to rest and on our return about 4pm in the afternoon Dad’s breathing had deteriorated quite rapidly. He was wearing an oxygen mask (which he didn’t like at all and kept trying to take it off when the nurses weren’t looking) and his breaths were short and sharp like he was having great difficulty getting air into his lungs. We all found this very hard to cope with as he had become so frail and weak in a matter of a couple of hours. We stayed at the hospital for the evening and when some new blood arrived for Dad at about 10pm the nurses advised that it would be ok for us to go home and that they would call us if his condition showed signs of deteriorating through the night. We left the hospital just after 10pm and tried to get some rest.
Sunday 14 May At 12.45am a nurse called to inform us that Dad had got a lot worse and could we get to the hospital as soon as possible. We all instantly knew that something was seriously wrong and rushed to the hospital as quickly as we could.
We were devastated and heartbroken to discover that Dad had passed away just moments before we arrived – we couldn’t believe or take in what we were being told and couldn’t come to terms with the fact that we would never see him again.
We later found out that Dad had contracted Septicaemia and Pneumonia which had resulted in renal failure of his major organs in the early hours of Sunday 14th May 2006.
I believe that if Dad were still here he would want us to continue this site in hope that it will continue to help other people and their families facing similar situations. I think he would also want us to warn others of the seriousness of infection (Septicaemia) and its symptoms.
Septicaemia (blood poisoning) I have obtained the following information from the NHS Direct Website
Blood poisoning, or septicaemia, is a bacterial infection that occurs when bacteria get into the bloodstream and multiply rapidly. Blood poisoning normally happens when bacteria enter the bloodstream in large numbers, and spread too quickly for the immune system to destroy them. Once in the bloodstream, some types of bacteria release poisons known as toxins that attack the body’s tissues. Blood poisoning is a potentially life-threatening infection that must be treated rapidly in order to prevent the infection from spreading to the heart and lungs.
Septicaemia begins as an infection in the walls of the blood vessels, before developing into a tissue infection such as cellulitis. Blood poisoning commonly occurs as a complication of a serious infection, such as a kidney infection. Blood poisoning is dangerous because once bacteria get into the bloodstream, it is difficult to prevent them flowing to the body’s vital organs. Meningitis is caused when the membranes covering the brain and spinal cord become infected and inflamed, which can be a consequence of blood poisoning.
Elderly people with existing health conditions are particularly susceptible to blood poisoning, as are children. The risk of blood poisoning is increased if your immune system has been weakened by a chronic illness, or if you have undergone surgery recently.
Symptoms may develop suddenly and can include the following:
· chills and shivering
· rapid breathing and headache
· low blood pressure and possible loss of consciousness
· skin may feel pale, cold, and clammy
· delirium and/or depression
In most cases, blood poisoning occurs when bacteria escape from an infection and enter the bloodstream. Blood poisoning can also result from wounds, burns and infected surgical incisions, all of which release enough bacteria into the bloodstream to cause septicaemia. Internal conditions ranging from urinary tract infections and pneumonia, to boils, abscessed teeth and gum problems, may cause blood poisoning if enough bacteria escape into the bloodstream. The bacteria from the infected sites are then carried in the blood to the body’s tissues. The immune system attempts to combat this by releasing endotoxins into the bloodstream to defend the blood vessels against leaking. You may feel feverish and chilled, as the body attempts to bring the poisoning under control and prevent fluid loss into tissues. If this not prevented, infections such as meningitis or typhoid that affect the whole body may develop.
If you think you may have blood poisoning and are displaying any of the symptoms, it is important to seek urgent medical attention. Your doctor will assess your symptoms and carry out a blood test to identify the bacteria causing the infection. If septic shock is suspected, you will be hospitalised while the blood is tested for bacteria, blood gas levels, and other indicators. An electrocardiogram (ECG) may also be taken to check for an irregular heartbeat.
Once the bacteria have been identified, blood poisoning is normally treated with oral or intravenous antibiotics. Additionally, the infected area may need to be drained in order to disinfect it. If septic shock develops, emergency treatment and antibiotics including penicillin will be administered. As blood poisoning can be fatal, it is usually necessary to remain in hospital until a complete recovery is made, in order for any potential complications to be monitored.
The following measures will reduce the risk of blood poisoning:
· Be aware of the symptoms of blood poisoning. The infection can spread very quickly and it is important to know the signs to look out for.
· Vaccines against meningitis and tuberculosis are offered within existing immunisation programmes. Although they do not offer protection against all strains of infection, they still provide an excellent defence.
· Keep wounds clean. If you cut, scratch or break your skin in any way, make sure the wound is cleaned, treated with antiseptic, and covered with a plaster or dressing if necessary.
· If you develop a mouth infection, see your dentist straight away for treatment. For a faster recovery from an abscessed tooth, apply a warm-water compress and rinse with warm salt water. Eating soft foods and flossing regularly can also help to prevent infection spreading.
· A boil should be treated by applying a warm-water compress to the affected area for 20 minutes, three times a day, until it bursts. You should continue to apply the compress until the boil has completely drained of puss. Do not be tempted to squeeze boils as this can spread the infection.
Originally written in 1996 © John West
Published on the WWW in 1999
Updated latest story between 13 May 2005 and 5 May 2006 (changes in fuchsia colour above)
Updated by Tamsyn West May 2007