A belated post folks, still not cut out for this blogging business! I had an appointment last week at the Royal Hallamshire to see the surgeon, Mr Wyman (think I've been misspelling his name on previous posts). This appointment was primarily a progress check and to receive the results of the chopping and slicing they did on my stomach. Results then, drum roll please.............. I had very early stage stomach cancer. Yes, by definition I've had stomach cancer according to Mr Wyman. They found six patches of stomach lining that they didn't like the look of, and further analysis showed early developments of tumours. Lymph node testing indicates that this was early stage and localised to the stomach, so further treatment isn't required at this stage. That said, they are not able to offer me any guarantees and I need to be monitored. Right from the start of the genetic testing roller-coaster I've honestly felt lucky and never hard done by. Now I feel like the luckiest guy in the world, they reckon that these patches were due to turn pretty nasty imminently, so the testing has without doubt saved my life. I'll never complain about our health system again, apart from the food, room for improvement and in need of Messrs Oliver and Ramsay!
In other news...... I've joined the Cambridge University HDGC Research Project in the hope I can give something back and help others going through this. This will mainly involve filing in questionnaires based around quality of life and well being. The rest is a case of 'same old' really. The eating's going well, still discomfort and a little pain, but nothing major. My weight has levelled out and I'm not losing any more. It would be a miracle if I did though given that I never stop eating. I managed a Chinese takeaway the other night with friends. I didn't have much and steered clear of the hot stuff to avoid a 'turbo lax' effect (one for Dumb & Dumber fans) and it went down well. Even managed half a glass of wine in very small sips, which also was uneventful! Energy levels are steadily rising which comes in handy when you have a Duracell charged 2 year old running around.
So, the pathology results have certainly assured me I made the right decision. Not that I needed assuring, but some people did say "Why are you having the op so soon, why not wait a while?", doctors included. Hopefully anyone reading this with a CDH1 mutation and a stomach will be encouraged to have the TG and give them self every chance of survival.
Thursday, 17 December 2009
Tuesday, 1 December 2009
So far so good!
I'm told that people actually read this with interest (you sad people), so I thought I'd better give you another update, although it's much of the same really. Tomorrow will be 1 month on from the op and I'm still waiting for it all to go wrong, no sickness, no goo, no dumping syndrome, what's going on! Despite my boy passing on the Great Plague (man flu) to me, I'm still doing really well and have learned a lot about how my new digestive system works and how to minimise pain and discomfort.
Although my diet is still not very adventurous, I am becoming a little more daring with food and are yet to suffer badly as a result. I had avoided anything sweet, but I've introduced shortbread biscuits, carrot cake and ginger cake, mmmm cake. I'm not gaining weight yet, but I'm confident that I will soon if I remember to snack! Seriously, that's all I do, eat, drink and visit the loo (bathroom, for my friends across the pond!). I think I might move the fridge to the bathroom? Got to be better than moving the loo to the kitchen. For those interested, all is still ok in that department by the way! Most meals and snacks still cause discomfort, but I'm learning to minimise this by not overdoing it and sitting still for half an hour or so afterwards.
I'm now a qualified junkie! I've had 5 build up injections of vitamin B12, 4 of which I did myself under supervision from the nurse. She says I'm a natural, which I could take as an insult, but I see what she means I suppose. I inject my thigh with the solution which is easy as pie. The hardest bit will be picking my wife up off the floor when she sees me do it at home. From now on these will be every 12 weeks, so fairly infrequent. I'm booked in for the flu and swine flu jabs later this week along with most of the pensioners in my local area. Although I'm not really in any of the 'at risk' groups, the nurse thinks it would be sensible until my diet is sufficient to rebuild my immune system.
The wound has healed well and has turned a deep red colour. It's still a little sore at times, but not bad at all. My stomach muscles around the wound are quite sore, so I guess they're healing. My energy levels are improving, but I do still tire quickly. I ventured out to the football on Saturday with my pal Dan which went well. I chose to wear my entire wardrobe as it was freekin freezing out and went armed with snacks. It was really strange watching the game sober, and quite depressing at times. I did forget myself and jump up when the second goal went in and nearly detached my esophagus from my bowel, really, it hurt. It won't happen again, not because I'll remember, because we won't score 2 goals in a game again for a long time.
Thanks again for all of the well wishes, cards and presents, I didn't realise I know that many people. My boss called round with cards and presents from colleagues following a collection they had, thanks to all, really kind of you. One of the presents was the game Operation, made me laugh! I don't know why my surgeon took so long, I can do a total gastrectamy in 10 seconds without the buzzer going off! I'm off to see him next week so I'll pass on some tips. I'll keep you posted on what he tells me.
Despite feeling quite good, it's now sunk in that it's going to be a long slow process to getting 'well' again. Without doubt, low energy levels are going to be the main battle. I'll get there though.
Thanks for reading.
Lee.
Although my diet is still not very adventurous, I am becoming a little more daring with food and are yet to suffer badly as a result. I had avoided anything sweet, but I've introduced shortbread biscuits, carrot cake and ginger cake, mmmm cake. I'm not gaining weight yet, but I'm confident that I will soon if I remember to snack! Seriously, that's all I do, eat, drink and visit the loo (bathroom, for my friends across the pond!). I think I might move the fridge to the bathroom? Got to be better than moving the loo to the kitchen. For those interested, all is still ok in that department by the way! Most meals and snacks still cause discomfort, but I'm learning to minimise this by not overdoing it and sitting still for half an hour or so afterwards.
I'm now a qualified junkie! I've had 5 build up injections of vitamin B12, 4 of which I did myself under supervision from the nurse. She says I'm a natural, which I could take as an insult, but I see what she means I suppose. I inject my thigh with the solution which is easy as pie. The hardest bit will be picking my wife up off the floor when she sees me do it at home. From now on these will be every 12 weeks, so fairly infrequent. I'm booked in for the flu and swine flu jabs later this week along with most of the pensioners in my local area. Although I'm not really in any of the 'at risk' groups, the nurse thinks it would be sensible until my diet is sufficient to rebuild my immune system.
The wound has healed well and has turned a deep red colour. It's still a little sore at times, but not bad at all. My stomach muscles around the wound are quite sore, so I guess they're healing. My energy levels are improving, but I do still tire quickly. I ventured out to the football on Saturday with my pal Dan which went well. I chose to wear my entire wardrobe as it was freekin freezing out and went armed with snacks. It was really strange watching the game sober, and quite depressing at times. I did forget myself and jump up when the second goal went in and nearly detached my esophagus from my bowel, really, it hurt. It won't happen again, not because I'll remember, because we won't score 2 goals in a game again for a long time.
Thanks again for all of the well wishes, cards and presents, I didn't realise I know that many people. My boss called round with cards and presents from colleagues following a collection they had, thanks to all, really kind of you. One of the presents was the game Operation, made me laugh! I don't know why my surgeon took so long, I can do a total gastrectamy in 10 seconds without the buzzer going off! I'm off to see him next week so I'll pass on some tips. I'll keep you posted on what he tells me.
Despite feeling quite good, it's now sunk in that it's going to be a long slow process to getting 'well' again. Without doubt, low energy levels are going to be the main battle. I'll get there though.
Thanks for reading.
Lee.
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