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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
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Posts found: 1 to 25 of 27
Thanks so much for your kind words, thoughts and prayers. That means so much to us. We've been sitting outside in the sun over the last few days which we have both enjoyed. I'll let you know how Moira gets on. SorryI've not participated in other discussions but as you can imagine time seems to be at a premium right now. Simon x
Thankyou all for your support, advice and kind words. Moira is at home, and has finally had to forget even part time working (which was a struggle to get Moira to do in the first place) and is now seeking medical retirement. She uses the saliva spray, which helps, but is v tired and not much energy at all. She has to build up stamina to go anywhere. Moira has contact with a Mac nurse, but the support Moira gets from her is not as good as I would have liked for Moira. Moira does though get a lot of help from her very good Dr at our local Hospice - they are excellent there for her. It is a struggle, but we are carrying on regardless - what else is there? Thanks again everyone. Simon
Thanks so much for your help Lainy & Marion. I will take all your advice. Moira is slowing down a lot, her breathing now is much quicker and her mobility is not brilliant, but we're battling on - made all the more do-able knowing you guys are there. Thanks so much for your help and good wishes. All best wishes. Simon
Hi Marion. Sorry ages replying, rather busy at the moment. Moira was in there for a while because yes her temp was sky high, 37.8 at one point. Also she was very tired not eating much, feeling very cold and shivering with feeling cold sand her legs were very swollen. She was also extremely constipated. They took her in, and it took them over a week to get her bowels moving, by which time she was in quite a lot of pain and very nauseous. They tried all sorts of different drugs. Moira is now at home but very very tired. Her tummy is distended and she is not eating a great deal - her mouth is constantly extremely dry. Her mobility is poor an both her legs are very swollen. I'm not sure what stage of the illness we're at but it's becoming harder and harder for Moira to cope. As ever I am supporting her through all of this and have fantastic support from my employer, family and friends. Best Wishes. Simon
Hi, it's ages since I was last on here but thought I should let you know the latest with Moira. She's still managing part time work, but unfortunately has had to spend the last couple of weeks in our local hospice due to what we have been told may be cholangitis. This made her really quite ill with nausea, accute constipation and general and extreme lethargy. Grateful to hear if anyone else has experienced this, and grateful for any thoughts/ideas that might help us. Best wishes. Simon
Hi everyone, and thanks for sharing your experiences. Moira seems to be cold pretty much most of the time, and yes she is very slight in build, more so since the cancer, her wrists are so tiny. I guess we'll just need to live with this. M is a fighter but the cold, nausea, no sleep, no energy and general lousy feeling is getting to her. Breaks my heart to hear her talking about having had enough of this CC and it having taken over her body. We'll get through this I hope. Isn't this thing so unfair. S
Hi everyone, sorry it's been ages since writing, but thought i'd update you on how Moira is doing. She's still battling on, she was diagnosed Nov 08, and still showing incredible strength. She is still going to the office each day, still putting on the Estee Lauder, but is clearly now getting more and more tired, but still talks about being absolutely fine. I would really appreciate thoughts on what is likely to be making Moira feel so cold though. We have been lucky enough to be having temps over here in England for the last few days in the low 20s, but she still needs to put jumpers and a fleece on. Any thoughts or guidance would be very much appreciated. Whilst I haven't written for a time, I do visit regularly and read the posts, I guess I'm just quite frightened. Best wishes and thanks for any help. S
Hi everyone, it's a while since I last posted, but just to let you know that my dear wife has managed to successfully compete for her job against many other candidates, and has been back working full time for a year now, inspite of having a daily battle with this deeadful illness. 3 yrs on from diagnosis, she's carrying on regardless and fighting like I've never seen before, she refuses to accept and give in, she is a true inspiration - I mention this purely as encouragement to help us all. S
Dear BB, my thoughts are with you and your family. S
Thanks to you all, it's great talking to you all. About Moira's shoulder, they suggested paracetamol, and Quinine (the latter is also used over here to help relieve the pain of cramps). So, it's amazing how people start owning up on the Estee Lauder. Haha. Shows excellent taste Lainy. Everyone, thanks for your comments, and Byron, thanks for your note, love your signature line, that is good and about the best getting the toughest you're so right. My mum always says you only get as much as you can cope with. They are such strong mantras aren't they. Spk to you all soon. VBR Simon
Hi Gavin, everyone. Sorry it's taken me a while to post, but it has been a real struggle getting anyone to do anything in terms of telling us what's going on with Moira. Finally, yesterday, I managed to get information from the Drs re scan results. Moira's ONC feels certain there is no lung cancer, but mets from her tumour. Which means we're over the moon with that, but also concerned that the cancer is progressing, albeit slowly. Outside of results and scans etc, Moira is feeling more tired, her right shoulder is aching most of the time and she is looking thinner and generally more run down. But, we keep going, Moira is still maintaining full time work, and we refuse to give in. Yes we get worn down, but will never give in. Just treated Moira to a top-up of her favourite Estee Lauder makeup, which she uses faithfully everyday. Thanks again for listening, and hope you're all ok and staying positive. VBR. Simon
Hi Nancy, Lainy, and thanks for sharing that with me. Sometimes I feel like I'm going nuts with this. Moira bless her is still trying to come to terms with "why me, I'm only 43", and feels so bad for what she feels she us putting me through. I try to minimise the effect of this in me with her, purely to maintain the need to "BE STRONG". I must say though, sometimes I find myself wondering what is the point of all this. Following the news we had last week, and ahead of the appts I knew would be booked for next week with Moira's ONC, I took Moira for 4 days to Paris (we just got back this evening). That was bitter sweet, that's a very special place for us, but then Moira is thinking she'll never see it again. Sorry to ramble, no real point to this note, perhaps it's my nerves for the appts next week. I'll let you know how we get on, but more importantly, thanks again for your words and thoughts. Love. Simon
Hi all, having a difficult time at the moment. Results of the scan are back from Moira's GP, and we have just yesterday been told that Moura's cancer has now spread to her lungs. They have found a nodule in the top of her right lung. Waiting for an appt with Moira's oncologist, but just trying to keep things together at the moment. M is feeling like she can't take any more, and has had enough. What a cruel, cruel disease. Trying to do my best in supporting Moira but thus is getting hard. Simon
Hi, I took all your advice, and the coughing seems to have eased a little, but not by much. Christie and Moira's GP have offered no suggestion of what the cause may be - I guess/hope that's for next week with the results of her scans last week. I will keep you posted. Gavin, in terms of the haggis, no chance - I am English after all!!! Haha. The car run will be good later today - if you're around Loch Lomond this weekend you may see us - we're a group of Lamborghinis, Ferrari's, Porsches and Mercs enjoying the roads - we'll be staying at Mar Hall. Best wishes to you all, and again thanks for all your help and thoughts. Simon
Hi Lainy, thanks for that, never thought of it like that and if that's right then I just hope I'm doing all I can. In terms of Gumball, it's a car thing - I'm a member of a group called supercardriver, this w/e there are 30 of us going on a run with a dinner tomorrow (Sat) eve at a lovely hotel in the Scottish Highlands. It'll be a nice little break for us if we get there - Moira had another non-stop coughing night last night. Simon
Hi everyone, since we last spoke, and following your advice, I made appts with Moira's Dr, MacMillan Nurse, and spoke to the Christie Hospital (England's specialist cancer hospital). Got scans taken and she is now taking codeine as well as quinine. Just need ro wait for the results, but the cough persists. Just need ro keep plugging away. Can you believe, Moira still wants us to keep to our commitment of doing our planned Gumball event up to Scotland and back this weekend! Where does she get her grit and determination from! Simon
Thank you all so much for that - you are so part of my family in my heart. Thank you so much for your thoughts and help. I will try all that, and particularly gonna get on for that scan. I don't want to leave this. Love and best wishes to you all. Simon (STi)
Hi everyone. Can anyone help with this, since doing the Race for Life etc and returning to work, my wife continues to do really well with this damned illness. Apart from general tiredness etc, Moira has a really hard cough - no symptoms of a cold or anything, the this cough is significant, and the coughing makes her throat sore. Moira also finds it hard to swallow sometimes. It's nearly 3 yes since diagnosis - does anyone have any thoughts on this please. As ever, thanks in advance for your help. VBR. Simon
Hi, it's a while since I posted. I promised to let you know how my wife is getting on with work and things. There've been a few dipsand scares, but my wife is nor walking the 5km 'Race for Life' tomorrow. Two and a half years from diagnosis, and this is what she is achieving, as well as back in her full-time job. So proud of her. Hope you're all ok, and thinking about you. Best Wishes. Simon
Hi Gavin, that's really helpful. And regarding Whitby, we have been twice in the last 3 weeks, fish & chips as good as ever. As you say, they go perfectly with the sea air and the sun. We carry on as much as we can doing what we have always enjoyed, and we won't stop until we really have to. Best wishes to you. Simon
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, it's a while since I was on here, but it's a lifesaver for me seeing the various discussions as I continue to care for my wife. I posted a while ago that my wife was back at work after intensive chemotherapy & SIRT for her CC. Can anyone please offer any advice on life expectancy after 18 months of this treatment? We were told ages ago that 9-12 months would be expected without treatment. My wife's last received treatment last August. It's now March, so just trying to get things into perspective. Absolutely any thoughts owoukd be very much appreciated, as I have been told to expect a quick decline. Thanks in advance. Simon
Posts found: 1 to 25 of 27