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Thanks to you all for being so supportive. The latest thing for my wife is that she is losing her hair, and her left leg is swelling up, in addition she is getting many more veins popping up across her body. Has anyone seen thus, got any advice please. Thanks Marion, but how do I get in touch with Dr Giles? Regards Simon
Hi Susan, thank you so much. This is a very difficult journey, and just when you think life is just so impossible, people you have never met can be an incredible lifeline, helping to disolve that incredible feeling of isolation. But more than that, my CC family is teaching me new levels of understanding in humanity & compassion – I never thought I would be this lucky. Strange comment I guess given our predicament. Whilst my wife is planning to do a 5km walk for life in June, her veins are up much more now, her hair is a lot thinner & less than it was, and nausea is featuring, as is a much reduced appetite, pains in her stomach and up her body generally. This is a cruel, cruel illness. So sad that 5 years ago she defied all odds by surviving a horrendous car crash (the prognosis I was given was she would be at best a vegetable if she managed to survive), only to experience this – how much must one person do to prove they want to live?Simon
Just to say it’s so good to hear I’m not alone in this. When my wife was diagnosed 2 years ago, my brother (who lives just 8 miles away) sent me an e-mail saying there’s probably a cure for this somewhere on the Internet, and I haven’t seen him nor his wife since, and I think my parents have been round to the house 4 times in the last 18 months. How true “the show must go on”, and it does. It is a shame some people just can’t cope with something like this, it’s just a shame they can’t rise above that and try to understand what we’re going through, living with this nightmare. What I would say from experience, look to your inner strength, trust it, and you will amaze yourself – I have.
Good luck and love to you all, this is a great family to be part of, I feel priveleged to be part of it. Simon
Hello again and thanks for all your replies. Totally understand the pilot thing, and I think I’m guilty of that. I should have learnt by now that with this, little boxes don’t work – they have to with my job, but not here. I guess I am trying to find something to cling to that is certain about my wife, if that doesnt sound too daft. Living each day is the thing, I understand that, but I hare the thought of my wife leaving me. Jolly, to answer your question, she was on Gemcitabine (spelling?!), Cisplatin & 5FU. She is doing well, in work most days, but getting mire breathless, veins are up all over the place, her hair is really thin, distended abdomen, and her appetite is nothing like it used to be. But, we are trying to live each day. Some anger issues are surfacing which I am now trying to help my wife with – that’s not easy. We are taking a day trip to Bridlington (East Coast Yorkshire town) for a short beach walk tomorrow, then fish & chips in Whitby. Thankyou all for your time and help. I hope we get to see over our valley in summertime again, enjoying the sun and listening to the sheep from our balcony. Who knows!
Hi everyone. Thank you so much to Irishgirl, Lainy & Gavin for your support and comforting words. As we all know, going through this we need as much of that as we can. Tomorrow my wife gets her Hickman line taken out – mixed feelings in that – staying positive about the tumour, line out is one less reminder/difficulty, but also seems like a door closing. Been told the tumour is stable, but that if/when symptoms carry on, time for my wide will be short. So, we have returned to as much of a normal life as we can. My wife is now back at work 3 days per week, not as she was, but as she us now, and we’re thankful we’ve managed to have another Christmas together. What I would say again to anyone facing this in any way, keep going regardless. Never stop hoping, and never give in. One thing I have learned from this family, is that none of us are on our own, and it’s so good to know that we all have many friends we just haven’t met yet. A very Happy New Year to you all.
Hi there, I too am new to this site, and is the first time I have posted anything on here. Really sorry to hear what you’re going through. My wife, in her early 40s, was diagnosed in Jan 2008 with cc, her only symptom being a swelling in her legs. Almost 2yrs on, she is now looking to start a phased return to work. Last year she was on Gemcit, then this year she was taking Oxal & 5FU, plus she had SIRT to one side of the tumour in June. The trick is to keep positive and keep going. Side effects of treatment and the tumour can be unpleasant, but I have learned very much that everyone is different, and that NO-ONE can predict with any certainty what this cancer will/might do. My wife has now been told 3 times over the last 20 months that she has only a couple of months left to live, the last time in March of this year. Positive thinking and complementary therapy for my wife continues to be a great help to deal with this terrible disease. My advice would be to be thankful for each day as it comes, feel lucky for the simple things, and that gratitude will give you and your family the strength to deal with whatever this throws at you. Here in England, we are lucky enough to have the Christie Hospital in Stockport, Manchester, who continue to do wonderful things for my wife.
Good luck, and very best wishes. Simon
