malc2073
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https://picasaweb.google.com/malc2073/AMMFPenyghentApril2011#
We did it!
Do hope that the link works to give you an idea of a memorable day.
Hi Alex
I’m a whipplee (is that a word!) from Jan 2010 so in the same club as your mum but without the resection – tough route to have to take and hard for those like yourself too.
The ‘stages’ thing can be as scary as the ‘return’ thing from another recent post.
Maybe an alternative stages thing is a ‘quality of life stages’. I’m in a good stage – Stage 1 – and hope your mum is too.
Malc
Thanks Lainy
I’ll let Katja and Matt take the credit for the ‘beautiful baby’ bit.
You can see from one of the pictures that Joe and me are already reading to each other – do you guys have Peppa Pig over there? http://www.peppapig.com .
You may not believe it but we are actually reading ‘Peppa Pig goes to College’ (Mummy and Daddy Pig are feeling broke)
Malc
Thank you Nancy.
AMMF http://www.ammf.org.uk
is the only charity in the UK dedicated to cholangiocarcinoma. The full title is the Alan Morement Memorial Foundation. AMMF often mentions our friends on Cholangiocarcinoma.org as an important source of support and comfort.It is run by a wonderful lady called Helen wife of Alan who died in 2001. She works tirelessly to raise the profile of Cc and to fund research on this side of the atlantic. She is a really important champion for those diagnosed and their families.
My fundraising event is on my grandsons’ first birth when Joseph and I will be climbing Pen-y-ghent in the Yorkshire Dales http://en.wikipedia.org/wiki/Pen-y-ghent.
I never imagined that I would ever see the marvellous view from the top again when I was diagnosed so you can imagine my excitement at taking our new arrival along for the ride.
He was born three months to the day after my Whipple op and three months was the minimum time that my surgeon said I would begin to feel something like normal – the oncologist unfortunately put an end to that target when I went on the capcitebane trial running in the UK for six months!
I have a fund raising page gving all the info at Just Giving http://www.justgiving.com/Malcolm-Robinson0 where you will see Joe and myself getting in some practice – although I have to confess we were walking on a dead flat beach when this pic was taken.
I’ll keep you all posted on how we do.
Three and a half years – that’s just given me a lift if nothing else…..I’m one year down the line….”da do Ron Ron Ron” !… & you of course Nancy.
I echo your final sentence too.
Malcolm
Thank you – I do have to admit to feeling comparatively at the fortunate/lucky end of the Cc spectrum
Thank you Sara – I suppose it is google and its tendency to throw the site up near the top of any list.
Hi Andie – greetings passed on as Kate is here for Sunday meal and we are watching grandson take his first steps – priceless.
Sorry to hear of your dad’s experience. The Wikipedia page knocked me sideways, backwards and upside down in two sentences
Thank you for your good wishes. I do feel well right now if a little tired from at trip to Twickenham to watch the rugby yesterday!
Hi Lainy
My post was inspired by the previous “do you consider to be cured” post – I think a couple of ‘mights’ or ‘coulds’ would help with the Wikipedia wording and that this would balance the negatives and give more chance for us to work on that “attitude is everything” frame of mind. I understand that the medical profession avoid that form of wording however.My cc was distal located, staged at 2B – whipple operation by Mr K V Menon of the Leeds liver team headed by Professor Lodge.
I completed the Xeloda capcitebane trial in August 2010 and have had a clear scan in September with another due at the end of this month.
5 good years sounds an amazing achievement for Teddy and yourself and the kind of info that a truly ‘encyclopaedic’ publication should be including prominently.
Malc
Thank you – the site has been invaluable especially for my daughter ‘Katja’ who translates the positives on here for us all.
Yes indeed that was the advice that I remember so well – grab a cushion and “love your cut”.
Recovered? Well I am just about to take part in some fundraising activities for AMMF here in UK. Going up a famous hike in Yorkshire – and taking said grandson along although at 9months he doesn’t know it yet. Certainly feel recovered from the whipple – back swimming regularly. CC different of course – scan at the end of the month.I had a whipple op at Leeds UK in Jan 2010 following cc diagnosis after jaundice. What do I remember? All the medical things certainly but oh my goodness does it not half hurt if you have to sneeze or cough! I remember thinking perhaps I had had my last meal of fish and chips – I hadn’t or that I wouldn’ see my yet to be born first grandson – I have.
The effects of diagnosis can be more difficult for friends like you or blood relatives often than the patient who has to go with medical experts.
If your friend would like direct contact with a whipple graduate in the future just ask.
Malc
