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petervee
Comments
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It was good to meet you too and everyone else who attended. We were pleased to meet members of this community in person and to have the chance to exchange stories about our various experiences. We also enjoyed taking part in the meeting and found it very interesting. Peter and Mary
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Hi Katy Pleased to read your interesting story and to have met you last week at the Focus Group meeting, I agree from your input at that meeting that you are passionate about helping others with blood cancers. You obviously work hard for Anthony Nolan. Keep up the good work. Hope your health continues to improve. Best…
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Hi AMB You have posed some difficult questions above but hopefully our responses may help in some small way. The important thing is as Steve says we are all different and that not everything that you hear or read about will effect you, there is lots of information out there. I had a stem cell transplant 2 years ago at The…
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Hi, I'm heading down on Thursday the 10th to the Focus group meeting. Also looking forward to meeting other members. Peter
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Further check up Monday this week and told blood test for virus was borderline. Another blood sample taken for culture tests, before any anti viral treatment given. Informed today that the recent blood test was negative and the virus was not detected. So a good result, looks like the antibiotics may have done the job.…
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Thought I would mention this refreshing drink. Before transplant I was advised not to have any alcohol because of low platelets. Post transplant the last thing on my mind was alcohol. However during recovery I saw an article reviewing a non alcoholic Merlot grape juice, a Waitrose product sold in their chilled juice aisle.…
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Diagnosed today with a virus, adenovirus. Had persistent cough for about 5 weeks, had been given 2 lots antibiotics early May with little effect, last weekend cough spasms got worse and high temp flu like shivers, called hotline and went to clinic Monday, blood levels all good, chest sound good, x-Ray ok. Throat and nasal…
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Hello Do contact Anthony Nolan, Amy or Annelese will put you in touch with Donor Wefare Section or speak to your transplant co ordinatior if you have one. I've always handed my letters to her and she forwards them to Anthony Nolan. I started off with a letter saying thank you and an update of progress. My donor replied and…
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We found the best thing was being blunt to family and friends and saying no visits if anybody had a sniffle or cough or cold. If they were close enough to have the full story then we didn't have any real issues. However all visitors no matter how close would not get past my wife unless they used the hand gel which she kept…
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I agree very much with KW13, this is a hard one. I went in for transplant feeling the same as I had done for years with reasonable fitness levels, working and always being active and at this point facing an uncertain future. I was self employed and gave up work 2 weeks before transplant. I found the isolation particularly…
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Hello Nick I had a craving for wine gums which really got the saliva working, those made by M and S should be avoided as they contain grapefruit flavoured gums. Grapefruit should be avoided by anyone taking cyclosporine medication. I also got a real urge for cakes which my wife used to get from the local bakery as a treat,…
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Hello Una Pleased to hear from you on the forum. Encouraging to hear your husband is recovering well and keeping active 7 years on, despite driving you mad. I have just had my second anniversary, and feel as though I'm.improving all the time and doing more physical things about the house and garden, and probably driving my…
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Amy/Steve Again a bit like you Steve, I thought I had got away with the hair loss thing but at the time I wasn't bothered anyway, but I remember a Sunday morning about 3 weeks into treatment that there were big clumps of hair on my pillow. As I say at that point it could have turned green and I don't think I would have…
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Steve I too used to suffer with hay fever and did for about 50 years! I used to dread this time of year. But a similar thing has happened to me, I no longer have hay fever. On a clinic visit about this time last year I mentioned a cough and bit of a sniffle. I was given a check over and all was well. I mentioned my past…
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Hi Steve Thanks. I have been in touch anonymously with my donor by letter, initially it was a 'Thank you' letter with an update that all was going well, I got a reply to that first letter and we have corresponded a few times since. I get the impression that my donor is really interested in the progress and he has said it…
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Hi Steve
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Hi Renate Congratulations on your second anniversary! You are sounding very happy and rightly so. Good luck with catching up with your donor. Best wishes Peter
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Hi Amy This is a great story and it's fantastic that they got together for the Marathon. I'm pleased that Johnny looks so well. It was really good that Sean took part and also made that first step to be a donor. Well done to both. I'm sure this story will encourage more donors to sign up. I'm a recipient and communicate…
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Hi Steve Visited the new HTU and Young oncology unit on Thursday. A really impressive build, lots of light, lime greens and shades of purple. The first floor accommodation is all off a 100 metre corridor with a nursing station in the middle, 31 patient, visitor rooms kitchen etc. All patient rooms ensuite wet rooms, a…
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Hi, I agree with all that has been said above. I'm grateful to the comments made by David especially the memory of the milk shakes, they became my staple diet, Complan mixed with ice cream, they were great . Tried them when I went home but they didn't taste the same and my wife soon gave up on them. I remember too the ice…
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Hello Tracy It was at the 18 months visit that I went onto the 3 monthly check ups. Hope your husband is making a recovery, I didn't realise they did transplants at the MRI. I had mine done at The Christie. It will be 2 years for me in May. Best wishes Peter
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Hi David Sorry to hear you worrying about post transplant, there is lots of help and support out here. Anthony Nolan produce a handbook titled 'The seven steps, the next seven steps' there is lots of information on recovery after transplant. Your hospital should give you a copy or you could get one from Anthony Nolan. I…
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Hi, Thanks for that response it was really helpful. Couple of months or so to go yet so I'll see what develops. Will keep you posted and many thanks to you and everybody on the Anthony Nolan register who are willing to help people like myself. Cheers Peter
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Hello Andy I was really interested and pleased to read your discussion. I haven't yet reached the 2 year point of being a recipient but I often think about my Donor. I have been wondering about how appropriate it would be to make contact in the future. The Donor has done something special for me and I would like to…
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I remember well the conditioning week before transplant day- the 3 course lunches and dinners, all the puddings and custard, maybe it was the plan to fatten us up. Things changed about day 5 when the full effects of chemo started to kick in. Then everything went downhill and meals seemed to be for picking and pushing round…
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I too think about transplant every day, it has been a life changing event. I'm reminded all the time to be vigilant about hand hygiene especially when visiting cafes, bars, restaurants and using public transport. When I was recently discharged from hospital I was told frequent hand washing can help to avoid viral…
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Hello Sally, my name is Peter, I am a bit older than you at 65. Very interesting to hear of your experiences and 2 transplants! Pleased to hear the second was successful. My transplant was in May 2012, I didn't have too much trouble with GVHD which was managed with short doses of steroids and lots of Diprobase. I was lucky…