Alan's Health Log

As you may have read, on 17th April I had my appendix removed.

Unfortunately, during the biopsy a lymphoma was detected; further tests showed other instances of cancerous lymph cells in the abdomen, as a result of which I am now on a full course of chemotherapy.

This is my log of progress, appointments, thoughts and feeling as we go through the next few months, so that interested people may be informed.  Skip the messy bits!  I would be happy to receive your comments by email to  Alan Wood

The earliest entry is at the bottom of this page, and the latest news follows this paragraph.

Friday, 20th June
I was in at the hospital before 09:00 this morning for a blood test, and then went up to the Macmillan Butterfly Centre for a check-up.  The blood test was very satisfactory, and also showed that the five days of injections had been effective in getting the bone marrow to produce more white cells already.  I am apparently still in good form as, apart from the hair loss and the change in my taste buds, I have none of the classic symptoms, i.e., nausea and sickness, constipation, and tingling in fingers and toes.  My next appointment will be on Friday, 27th June, for another blood test and check-up to ensure that I'm OK for Chemo Session #3 on Tuesday, 1st July. 

But before that, next Tuesday, I have to go for a check on the INR of my blood, to ensure that the level of Warfarin is OK; and then on the Wednesday, I have a check-up on my appendicectomy scar with the surgeon or his registrar; it appears all healed to me, but sometimes wearing trousers with a tight waist band is a bit uncomfortable.  I never realised that the abdominal muscle would heal with such a ridge in it - but I have never felt anybody else's scar, only my own!  Perhaps it will smooth out with time.  I'll let you know.

With all these hospital visits, I am very pleased to have the mo-ped, which means that I am not dependant on buses, and I can park it for no cost - particularly useful on Chemo-Days, when I am in hospital for eight hours or more!

Wednesday, 18th June
I don't think that I have mentioned another of the side-effects that I've noticed - and that is the effect on my sense of taste!  I hardly notice my baldness - apart from when I look in the mirror, which isn't often (!), or put on my crash helmet and find it less snug than it used to be - but the change to my taste buds is always noticeable - at every meal!  Coffee and tea taste strange, and rather metallic, and even toast needs a thick layer of butter and marmalade to make even a slight impression.  I really look forward to the return to normality of my sense of taste.

Monday, 16th June
The palpitations were still there today, so I rang the Haematology Day Centre, who called me in for a check-up.  They did a blood test and an ECG; then they reported that all was fine, or, in engineering terms, NFF (No Fault Found), and they sent me home.  But I knew things weren't right!  However, during the evening, while at brass band rehearsal, everything suddenly sorted itself out, and I felt good again!  Obviously, playing the tuba has amazing therapeutic powers!
I also asked concerning Saliveze, but I was advised to do without it if I could - so I have. 

Sunday, 15th June
I was a bit tired again today - only two  hours sleep last night! - and also a lot of palpitations during the afternoon and evening.  I have been told about a mouth spray called Saliveze which is good for promoting saliva flow - I will ask at the hospital whether it is suitable for me.

Saturday, 14th June
A bit better today, just as well as I was playing in the brass band at Ashtead Village Day.  I was definitely losing concentration by the end of the day, but the worst part about it was that the steroids really dried my saliva up, so I could hardly play short quick notes; once I was playing a long note, I could hold it, but quavers were a real problem.  I kept having sips of water, but they just didn't last.  Never mind, I was informed that my presence was more beneficial to the band than my absence!

Friday, 13th June
I've been a bit tired these past couple of days.  Still, not too bad, all things considered.

Wednesday, 11th June
Having completed the first (of eight) three-week cycles,  I am pleased to say that I am still in good shape, with not too many side effects, these being mainly a few broken nights' sleep due to the steroids, and the hair loss.  Just lucky, I guess!  Or all the people praying for me.  Thanks, guys!

Tuesday, 10th June,  
Into hospital again - INR check carried out, and found to be 3.6, so another change in my Warfarin dosage.  Then the second dose of chemo, which took all day.  I left hospital around 17:30 with another bag of medicines to take over the next three weeks!  Additionally this time, in order to kick-start the bone-marrow into action quicker, I've got injections for five days.

Monday, 9th June
Into hospital for a further blood test.  The reluctant blood count had recovered well in the three days, allowing Chemo #2 to proceed on 10th June.  GP had not issued a sick note nor the prescription - this was urged, in the nicest possible way!

Friday, 6th June
Into hospital to see how the blood count had recovered.  One was still too low to allow chemo on Tuesday, so a further blood test was arranged for 9th June..

Thursday, 5th June
While washing my hair, I noticed lots of it coming out, so that has now started!  I asked Val to cut it very short, so she went all over with a #3.  So now I have to keep my "solar panel" covered, as one friend has commented!

Tuesday, 3rd June, 
The warfarin blood test (known as the INR test, = International Normalised Ratio) showed a value of 4.0, rather outside the recommended 2.0-3.0, probably caused by the Digoxin (digitalis) that I am on to control the Paroxysmal A.F., so that is taking some time to regulate again.

Friday, 30th May
Due at 12:00 for 'Nadir' blood test, when the blood cell count is reckoned to be at its lowest.  All necessary readings were satisfactorily low, so all was as expected.

Thursday, 29th May
Occasional short-term palpitations again a.m., but stopped on their own.

Wednesday, 28th May
No problems, thankfully!

Tuesday, 27th May
02:00 - Difficulty in getting to sleep due to palpitations.  
04:00  - Woke up at 04:00 with a pulse rate of 150 and feeling breathless.  Valerie took me into A&E, where they did an ECG, and wired me up to a monitor.  Pulse rate very variable.  They gave me Digoxin to steady the heart rate, and admitted me to the Clinical Assessment Unit (CAU).  I had missed breakfast, so had to make do with a toasted sandwich.  I had a nice piece of fish for lunch, though.  My pulse eventually settled down, and I was discharged at 18:00 with yet another tablet, Digoxin, to take daily.

Monday, 26th May
Despite eating normally, I felt as if my blood-sugar was low, so had a few little extra snacks, which helped the situation.  I have to be in at the hospital for 09:15 tomorrow for the INR blood check, so up early for a change!

Sunday, 25th May,
Still no real ill-effects, but last night was still rather broken.

Friday, 23rd May
Last night was a bit disturbed and broken, with most peculiar dream, on-going between bouts of wakefulness.  I was told that this was caused by the steroids.  I will finish taking the steroids for this three weeks on Saturday, so I hope Sunday night will be better!

Wednesday, 21st May
Sorted out the tablets for the next few days.   But no ill effects or reaction  today.

Tuesday, 20th May
In to the Haematology Day Unit for the first session of chemotherapy.  Early injections went OK, though the piriton made me very tired.   The ritoximab was started very slowly, to see how I could tolerate it.  This went well, and was increased in stages with no ill effects on blood pressure.  The other medications were added, with no problems and I eventually was collected by Val soon after 5 p.m., carrying a load of different medicines for the next three weeks.

I had taken books, a radio and a cd player into the hospital, just in case I was to find time hanging on my hands - as it was, I listened to the radio on headphones and read a few pages of book, but most of the time I was drowsing, under the influence of the piriton, being woken up to have my blood pressure taken!

Monday, 19th May: A further consultation with doctor and nurses.  I was offered the chance to participate in a trial comparing the normal UK 21-day cycle with a new 14-day cycle used in Germany.  I agreed, but the computerised randomisation put me on the 21-day cycle as a control.  Maybe this is easier, not so aggressive.

Friday, 16th May: In to see the Haematology doctor.  She was impressed that the CT scan results were already with her, whereas the bone marrow and echo test results were not available.  She confirmed that the scan showed that further lymph nodes were affected, and that I should therefore be on a full 8-cycle course of chemo, each cycle lasting three weeks.  Of course, this was a bit of a shock, but the way everything was explained minimised the effect.

Thursday, 15th May:  the last test was the CT Scan, both ordinary photographs from front and side, then sections 5mm apart - imagine a sliced loaf!  I mentioned that I had a review with the doctor at 09:00 the next morning, and it would be very helpful if the scan could be analysed by then. 

Tuesday, 13th May: the next test was an echocardiogram, to ensure that the hearts muscles and main blood vessels were in order

Monday, 12th May: the first of the test was taking samples of bone marrow.  I had heard that this would be painful, but I described it as momentarily uncomfortable.  I was also warned about further bleeding, and was given a dressing for this, and more pain, for which I was to take paracetamol - neither a these happened, fortunately

Wednesday, 7th May: saw the Registrar of the surgeon who had taken  out my appendix.  She was not concerned about the oozing from the wound; I was to be patient, and it would heal OK

Tuesday, 6th May: To the haematologist, who described in very clear terms what the situation was, and that I would need a series of tests to ascertain whether and how far the cancer had spread.  I also met Dawn, a Macmillan nurse who specialised in lymphomas.  Both of these ladies were excellent, with 'bedside manner', explanations, etc., all I could want.  It was recommended that I would have at least a 3-session cycle of chemotherapy just to be sure, even if nothing showed up in the results of the tests

Friday, 2nd May: In to the GP again, to see how the infection was - apparently there was no infection, so that was good.  While the practice nurse was changing the dressing, she squeezed the wound area, and more serous fluid shot out!  It was a good job she had an apron on - she realised then what I had been saying about the discharge!  The nurse also described briefly why I was going in to the Haematologist, as there had been a lymphoma found on the appendix.  At the time I didn't realise that a lymphoma was actually a cancerous growth on the lymph system - some later reading on internet gave me more information.

Thursday, 1st May: I had a telephone call from my GP re some trouble with the lymph cells, and he had asked for an urgent appointment with the Haematologist at Epsom.  This was arranged for Tuesday, 6th May

Tuesday, 29th April: The GP thought that the wound looked infected, so put me on more anti-biotics for five days, and I was provided with dry dressings to soak up any more fluid.  This was not considered very serious!

Monday, 28th April: The district nurse came round to remove the clips.  This was accomplished with very little pain.  I thought that the design of the clips, and how they could be removed without tearing the flesh was very clever - I was most impressed.  During Monday evening, I was sitting at my computer and reached down to pick something up from the floor, and suddenly I realised that a large area of t-shirt and joggers was soaking wet.  There had been a discharge of serous fluid from some pocket under the skin somewhere.  NHS Direct said to go the the GP in the morning.

Wednesday, 23rd April:  I weighed myself this morning.  I was 5kg more than when I went in!  I suppose it was the inactivity, and the amount of fluid that had been dripped into me.

Tuesday, 22nd April:  When I tried to do up the waistband on my trousers, I found that it wouldn't meet by a good 4" - my stomach was really distended.  It was a good job that I had a long T-shirt to cover the gap - and my embarrassment!  I brought with me various medications, anti-biotics, etc., to last a few days.  It was nice to be home again.  I hear that 5 days is a long time for most appendicectomies - mine was not normal, though. 

Monday, 21st April: I was told that I would be able to go home on Tuesday

Saturday, 19th April: Started moving around the ward - very slowly

Friday, 18th April: The start of a long recovery!  Tried a little soup in the evening, but this was rapidly ejected, with interest - now I know what they mean by 'coffee grounds'!

Thursday, 17th April: I went to theatre about 09:30 and came to at about 13:15.  I found out later that I was on the table for two hours; one of the doctors said that the appendix was the largest he had seen - about 6" long by 1.5" diameter.  The incision was about 6" long, too - no keyhole surgery here!  Put on a drip and anti-biotics.

Wednesday, 16th April: The pain was still there in the morning, so I took myself early off to the GP.  He hummed and hah'ed a bit, then decided to refer me to St Helier's Hospital.  There I was eventually admitted, and underwent various tests, and x-rays.  I was told that they would be removing my appendix in the morning.  I had had nothing to eat since Tuesday lunch, but wasn't really hungry.

Tuesday, 15th April: While at work, I experienced a general pain in the lower abdomen.  By bedtime this had located itself in the bottom right of the abdomen, a classic sign of appendicitis.  On a scale of 1-10, the pain was about 2-3, and I could prod it without too much problem