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I HAD A LYMPHOMA/30

Updated on February 23, 2011

Dr CERVI EXTENDS THE DILEMMA.

 The meeting with my own Consultant, Dr Cervi, took place as planned with the good Doctor fortified by receipt of the promised letter from Prof Linch regarding my potential inclusion for High Dose Chemo and Stem Cell Transplant Treatment.

Dr Cervi again repeated how gratified he and his team were at the excellent way in which my body had responded to the CHOP and INTRATHECAL Treatment administered over the past 7 months and which had taken me to the current position of Remission from the Lymphoma.

He explained at some length that as the Scan could not expose the minutest of cells that it was not possible to say that I was cured as there may be such cells lingering undetected that may at some point break out and restart the process and develop the disease once more and that if that were to happen treatment success rates were relatively slim. Food, indeed for thought!

He then confirmed that the Prof had written to confirm that despite my being outside the normal age cut off point by almost 6 years, he considered that I could benefit from the current approach adopted, which is to consolidate remission in patient EATL with the high dose/autologous stem cell transplant treatment as explained here in recent Hubs.It was reassuring in a sense that the Prof considered me physiologically younger and fitter than my chronological age and that my fitness, which he had tested superficially by the stair test, would be even more improved by 3 weeks time. This is proving accurate for with each day, the side effects subside and I am now returned to my basic exercise programme thankfully. Incidentally, my pulse rate, as tested by the Prof showed a recovery rate of 88 after 5 minutes from 108. Not bad but needs work on it to satisfy me!

At this time, we asked Dr Cervi, if I was in remission "today". Once having grasped the significance of the question, he confirmed that he could not say as remission status related to the Scan which was a month or so previous. I explained that our reason for pushing him on that was the insistence by the Prof that return of the disease was more likely in the early months of remission and thus, I concluded that if it had returned then there was little, or at least less point to subjecting myself to the High Dose etc. He agreed and indicated though that it would be imponderable as my next Scan would not be for 3 months and the Prof wanted things underway in 3 weeks or so! Nice one Prof!

My wife, a tower of strength during my treatment pressed Dr Cervi on the Mortality risk and the chances of a return of the disease. His open and frank answers distressed her as at no time previously during this ordeal. In a nutshell ,the chances of disease returning are 70/80%! These improve to give a nearer 50/50% figure with treatment but to set against that there is ,at my age a 13/15% of mortality in Treatment! Stark, as figures are, these really hit home to my wife and for the first time, she crumbled albeit briefly, in an emotional sense. Strange how that effected me far more than the facts of the matter and subsequently, it always returns to me when I consider and reconsider as I do daily on what to do about the treatment. Like a boxer I am in a lonely place surrounded by a lot of people. Friends, family and Medics, I know, all want the best for me but cannot make the decision as to go for it or not. Everyone stresses ,having been asked for advice and input that of course, in the final analysis, I am on my own about the ultimate decision. Thus, at the moment I change my mind 3/4 times daily and I really have not got a clue as to where I will end up.

One decision we did make with Dr Cervi, was to go ahead at once with the required preliminary tests. So far, I have had bloods and urine and am booked for Echocardiagram on 3rd March. That leaves only Lungs to be tested and as I wrote this, the Hospital rang to offer me this Friday, which I have accepted. I have no problem with the tests as I had most, if not all, before starting CHOP back in August, so I do not look to failing them and thus being relieved of the decision. How simple it was back then, when all I wanted to do was to get treatment started and some of my soldiers sent to the battleground to fight the invader. Now we do not know if there is likely to be an invasion for sure, and whether some of our new soldiers may decide to turn against us once deployed. Perhaps I should seek to solve something simpler like the Middle East first!

KEN CAMPBELL

i must make reference at this point to a long telephone conversation I had with Ken Campbell of the British Leukaemia Research Charity and the author of the excellent booklet that gave me so much information and which gave me thew basis for Hubs 25/26/27.Ken returned my call within the hour and listened intently to my scenario before giving me lots of sound advice upon which to base my decision making process and most importantly linked me to Lymphoma Research in the hope that they may be able to connect me with someone who has had the treatment previously and who may be able to give me the benefit of their experience. I am sure this will be of significant help and intend to progress with this forthwith. At the same time a chance here to both commend and recommend Ken Campbell to all who may face a cancerous problem. He may not have all the answers but can point you in the right direction from my experience.

POSITIVE MENTAL ATTITUDE.

I am aware it is some time since I referred to PMA here. Essentially, post Christmas, my treatments both CHOP and INTRATHECAL have challenged me more than earlier and I have  been concentrating on my own PMA to battle through the side effects and especially ,the lethargy the treatment build ups induced. Now, as things recede, I again endorse PMA as the strongest personal ally in the battle. I was aware of how many treatments I had remaining, how long the worst of the side effects lasted after treatment and used these as a vehicle for PMA and an internal Calendar to effectively count down each time to reach a better level. It certainly helped, especially in the middle days when I was able to think to myself that although I felt none to good at the time, that in 2/3 days time, for example I would be feeling better than I was at then. Having a reachable target proved invaluable to me and PMA, to my mind is a vital part of the Treatment Partnership. I hope for inspiration on making my decision on the proposed Treatment!

My personal PMA has been boosted by a united family effort which transported my wife and 190 miles each way north and back south to spend a couple of days with son No 1 and wife plus 2 Grandchildren. A change of venue, different faces to see and people to converse with on different topics does wonders. It also seemed to do wonders for my Nocturia ,as both there and now back home, for 3 consecutive nights I have slept undisturbed by calls to the bathroom. Absolute bliss! Good too for my wife, who benefited also and appreciates her own undisturbed{by me} slumbers. Some things are looking up, if only I could sort out the big Dilemma it would seem like Spring was on the way! 

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