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.
YAY!!! Yet another life saved - I am SO happy you went through with the surgery Lee. Unfortunately it seems that your experience is the rule rather than the exception - what a sneaky cancer syndrome this is.
ReplyDeleteLee, I'm very interested in knowing more about the research study. Given the rare nature of HDGC, I wonder if they are interested in the participation of others who have undergone TGs as a result of HDGC. Like you I know there are others, myself included, who would choose to participate with the hope of helping others. Do you have contact information that you would share with me so I can make a direct inquiry? Maybe No Stomach For Cancer can help in recruiting participants for the research study.
As always, best to you and your family. Much to be thankful for this holiday season, to be sure!
Karen
Well my Dear Nephew,i am not at wanting to go to that place that said you needed to be sure what you did was not the correct choice , like you we would be fools to say anything other than what we did was what we had too.
ReplyDeleteMy love for you and waht you will always be the key that helped me recover as quick as i am .
Well done enjoy Christmas with your young SON and very brave WIFE
lOVE YOU LOADS
Uncle Paul&Karen
Hi Karen,
ReplyDeleteThanks for your message, always good to hear from you. It's not really sunk in yet how lucky I've been thrughout all this, no doubt it will soon. I'm doing so well and feel more human each day.
The Cambridge HDGC study is a joint venture between the university and local hospital, Addenbrookes. They have contact details on here: http://www.cuh.org.uk/addenbrookes/services/clinical/hdgc/hdgc_index.html
I've joined the study later than most. Usually a CDH1 carrier would contact them before the TG and be offered several tests and consultations, where as I jumped at the chance of the TG quite quickly and what a choice I made!
They are really nice people and I'm sure they would be interested to hear from you. If I can help in any way please let me know.
All the best and seasons greetings from a very cold and snowy Yorkshire (it's -3 celcius right now!).
Lee.
Thanks Uncle Paul, very kind of you. It's been so much easier going through this together and sharing experience. All done now and onwards and upwards on a new, healthier lifestyle. Thanks again for all you've done.
ReplyDeleteLee.
Thats fantastic news Lee.
ReplyDeleteObviously not the cancer, but the fact that it's been removed and you know 100% you made the right decision.
You're very brave and like your brother said, your blogs are fantastic and light hearted despite the topic.
Hope you and Nic can now have a wonderful Christmas with Mikey.
Love from me and the little man x
Hey Lee. Blimey mate. There you go, the proof that you made the right choice ! Anyhoo matey, hope you, Nic and Mikey have a great Christmas - and I look forward to seeing you in the New Year. All the best. Neil A, Emma, Lily and Zack
ReplyDelete