Lets Face It Site
Well 2 years has come and gone since my operation and I can't go on without thanking my friends at "Let's Face It" for all their help and support in all that time, we meet the 2nd Friday of each month, until this month we were meeting at the General Hospital, unfortunately it is closing and moving to the new James Cook University Hospital we had our first meeting at the new venue this month July 2003 it was held in the newly built Holistic Cancer Care Centre. Thanks to Sue Stephenson the centre manager for all her help.
"Let's Face It" is a national charity founded by Christine Piff who herself lost half her face and an eye to cancer, it is to help the facially different be it through cancer, disease, surgery, accident etc. We try to give help and support and reassurance to everyone affected, we know what it is like we have been there, it's very difficult for some people to face the world with a disfigurement especially facial, our group is a way of meeting new friends who know what you are going through.
2 years since the operation and Prof. Avery [as he is now known] says it's a very good milestone to reach, last week I took 3 bad turns within 15 minutes I went dizzy and didn't know what was happening to me and ended up being admitted to hospital, I was released 24 hours later still none the wiser what had caused it, I was at Prof Avery's clinic on Tuesday 15th July when I told him what had happened he said what tests did they do I said none apart from Blood Pressure, Blood, & Chest X-Ray, he wasn't happy especially at not being notified of my admittance, he is contacting a Neurologist to see me, to try and find the cause of the attacks, and also the Bowel Specialist as my CEA blood level has risen since my initial diagnosis 2 years ago, apart from that everything is the same, I still need to lose weight but that can wait until later.
It's a particularly worrying time for the family at the moment as Kenneth our son who is in the Royal Engineers has been sent to Iraq , we have just returned from 2 weeks holiday in Palma Nova, Majorca with Margaret's brother and his wife, Margaret won the holiday in a competition run by our local paper and she shared the prize with her brother, it's a nice place but it was to hot for me, they were having a heatwave while we were there it was the hottest June for 130 years apparently. We are saving hard to go back to Turkey next year.
I saw a Neurologist on 18th August, .he said he didn't think it was anything major, he said he would arrange a brain scan but didn't think it would show anything unusual it would probably take 3 or 4 weeks to come through it's now 7th September and I haven't heard anything yet.
It's the 9th September and after having an X-Ray this morning ordered by Prof Avery after he found out my X-Ray from 10th July has disappeared I have just been told this morning that I have a tumour on the top of my left lung, I don't know any more details yet I will update this page as soon as I know. I am going for a CT Scan on Wednesday 17th and see a chest specialist on Monday 22nd hopefully to find out if anything can be done.
I have just found out that Jim from Coventry whom we met at Bournemouth with his wife Sheila passed away while we were on holiday.
It is Friday 3rd October and have just been told this afternoon that there are 2 tumours on my lungs and one is inoperable, they don't think Chemotherapy will help but they are going to try starting next week, I asked how long I would last without treatment and he said 3 to 4 months, I am in a daze at the moment and will update again soon. Well I've had 2 lots of chemo last year and been to New York for specialist treatment funded magnificently by family and friends, and am starting chemo again on 6th Jan 2004, won't know any results for 2 months just keeping everything crossed, not feeling to bad at the moment. Finished course of chemo, Well it's April already and I'm still around, a bone scan showed the cancer has spread into my left shoulder blade, for which I had a dose of radiation 3 weeks ago to help with the pain, the CT scan showed the lymph nodes and primary tumour don't appear to have grown or progressed any, they don't know whether it's the chemo or treatment in USA that is responsible, the spleen doesn't appear to have reacted to treatment, but nobody seems worried about it at the moment, I had just over 1/2 ltr of fluid drained from my left lung yesterday 5th April because my shortness of breath was getting to be a problem, I have oxygen upstairs, downstairs, and even in the car, if things improve I'll consider training for the London Marathon [dream on ],
I had a bronchoscopy yesterday 27th April and was very surprised by my specialist phoning me this morning 28th April at 8.23 with the results of the bronchoscopy, unfortunately what they found they cannot treat here in Middlesbrough, but there is a doctor in Newcastle who treats this condition, he can't guarantee he will accept me as a patient but he was writing to him explaining my condition, previous treatment and what they found with the bronchscope, hoping he will treat me, apparently my airway is restricted in 2 places, the top tumour and the lymph nodes pressing on it, there is also some bleeding further down, I'll publish his decision as soon as I know.