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petervee
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Hello Josiemoss and welcome to the Patient forum. I hope you will find it useful our aim is to help and support each other so do get in touch anytime and if we can help you we will. It must be very difficult at the moment being away from your children , I hope the new course of chemo works and you can get home soon. It…
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Hi I had my transplant 3 years ago, you ask a huge question about how long after transplant you feel normal. I'm sure it varies from person to person and age. I was 63 when I had transplant my medical team told me from the outset recovery would be slow and could take 12 months. We prepared ourselves as best we could but I…
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Sean, Welcome to the forum and I am sorry to hear of your diagnosis, I went through a similar thing 3 years ago now when I was diagnosed with hypoplastic MDS which was picked up following routine blood tests. I was older than you at 63, with a grown up family of three. I had retired once but was working self employed 3…
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Hi LolaB Welcome to the Forum and pleased that you are finding it useful. I had a transplant 3 years ago now and it is a major event and lengthy recovery but worth it in the long run. I had no idea I had a blood disorder, MDS, it was picked up in routine blood tests. I was working and winding down to retirement, enjoying…
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George, Very pleased to hear that you were able to celebrate your first birthday recently and hope that you are making good progress and enjoying life. It will be my third anniversary at week end. I will certainly be celebrating. My daughter is due to have a baby on Saturday. On Saturday evening I am off with one of my…
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Richard Welcome to the Forum and pleased to see you are now signed up. I can understand that you are facing an anxious time and that you have many questions about the whole process. There is a lot of information available and if you have a look around the Anthony Nolan web site you will find they have booklets available…
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Hi Rach Welcome to the Forum to you and your dad. My name is Peter and by coincidence I live just outside Manchester up here in the North. I was 63 years old and working when I was diagnosed with bone marrow failure, it's called hypoplastic MDS, I had no real health issues it was something picked up in a routine blood…
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Hi Becky and welcome to the Forum. Sounds like you have been having a rough time. I certainly haven't heard of your diagnosis so maybe you could keep us updated from time to time and enlighten us. It looks like there is a plan in place for a transplant in the future. So good luck for that. Stay positive and all should be…
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Hi, think this may be a natural part of post transplant, dry skin and dust clouds as you get changed. I was recommended Diprobase cream which we used to lash on and which did help, it was prescribed by the transplant team, when it got really bad which it did occasionally I was prescribed with a steroid cream which was…
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Hope you get a helpful reply from them. Hope also your husband is getting the help he needs for his eyes, one thing about this whole process is patience because I'm sure things will get better. I have got flu at the moment, went to clinic last Friday for routine 4 month check up, had what I thought was a cold but was…
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Hi, I'm just back from a 'Men's Skin Care/Well Being Event' hosted by Macmillan at their Centre at the University Hospital South Manchester. The event was a first for men and was presented by Boots staff including a Pharmacist. There were half a dozen men present and the main issues were dry skin, none of us wanted to try…
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Hi Billie Lots of sun block on exposed skin for me mostly face and neck, I have found that factor 30 minimum works for me I usually keep my arms covered wearing cotton only shirts with long sleeves. The cotton also helps to stay cool. I always keep head covered usually with a sun hat or baseball type hat which helps to…
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Colin I agree with you about the smell I was only glad to be taking the anti sickness tabs at the same time. With you also on the pill list it was awesome, my poor wife was so meticulous about getting them in the right order, I think I mentioned before I always managed to have a Calcichew left over when the next doses were…
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Hi Christine, Yes, the Beechwood Cancer Care Centre, Stockport. You may gather from my post above that I never thought it would be the place for me. I could never imagine myself talking about my illness to anybody but I can honestly say that my experience there completely turned me around. I would recommend it to anyone.…
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Colin, Sorry about the above, pressed the wrong button, I was going on to say that on discharge I took 35 pills a day which my wife dispensed with great care. We have just gone through the handwritten list she was given and agree the antibiotic tabs were the worst to take, probably the worst was Itraconazole. Personally I…
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Colin You pose an interesting question, I have just gone through a hand written list which my wife made on discharge from transplant and
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Hi Cynthia Pleased to hear that you are finding this Forum useful, many of us will agree that our experiences are very similar to what you are going through now but things will improve given time and taking small steps. It may help to keep a diary, Colin has mentioned keeping notes. My wife found this really helpful and…
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Hello Colin Sounds like you are making good progress, always good to hear. I will be 3 years post transplant in May and totally agree with you that walking is a great aid to getting back to normal and building up strength. Also you go at your own pace and gradually build on it. At about your stage post transplant we had a…
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Hi Billie and welcome to the forum. I'm sure you are no stranger to these pages, just want to say hello and wish you good luck in your new post. It's great that there are new members, everyone has an experience to share which can be helpful to another. It's also good to be able to support each other by just having a chat…
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Hi Tastes will improve in time, your husband may not have much of an appetite at the moment but frequent small amounts of tasty food will help or stick with what he fancies. My wife would ask me everyday what I felt like eating and we had a different routine from what we were used to, there was a lot of nibbling and…
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Hello I agree with what Steve says, my blood group also changed, it also cured my hay fever which I had suffered with from being a teenager. My unrelated donor whom I have met is Welsh, I live in Cheshire and in the recent rugby six nations competition I found myself supporting the Welsh! But only when they won. It is…
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Steve, Pleased to hear you are still keeping well and by the sounds of it back to and enjoying work. Some good points in your post which may help others. For me I took the opportunity to retire 2 weeks before transplant, I have said before that I had no symptoms and was self employed with no intention or thoughts of…
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Hello Rob Just want to say hello, I was diagnosed with hypoplastic MDS early 2012 and subsequently had a stem cell transplant from an unrelated donor in May 2012 at The Christie, Manchester. I underwent the 7 day conditioning process with chemo prior to transplant and then 3 weeks further isolation. I don't know the…
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Hello and welcome to the forum. Pleased to hear you felling well and have decided to start talking, this is a great place to share experiences, learn and support each other. Have a good look around the other postings there are some really good stories. I'm pleased to hear you have taken steps to contact your donor and hope…
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Hello and welcome to the forum. It's great to have a new member and I hope you keep in touch, I agree with Steve the forum is here to share experiences and to listen and help each other if we can. Sounds like you have already had a rough time, you can be sure Anthony Nolan will do their best to find you a donor and things…
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Thanks for comments above, slowly feeling better and taking 2 lots of antibiotics and 2 antivirals, should do the trick. I'm sure the search for a donor is underway and you can be sure you will be found the best match. The treatment is a bit grim but painless. Look at it as a new year a new you, you will be fine. Best…
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Hello Robert and welcome to the forum. By coincidence I'm sending this message from The Christie as I wait to be discharged. Just had two night stay with bad dose of flu! Going home with lots of antibiotics and anti virals. I was diagnosed with MDS early 2012 and had stem cell transplant from unrelated donor in May 2012…
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Hi and welcome to the forum sorry not to have got in touch earlier but have been struggling with a flu virus for the last couple of weeks and was admitted to my local transplant centre yesterday to get some I/v antibiotics and lots of anti flu virus drugs hoping to be discharged in the next day or so. I was diagnosed with…
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Hi jehartley Welcome to the forum, sounds like you have a lot to offer. Sorry to hear you still having issues ten years on, hope they not too serious. I had a unrelated transplant May 2012 and had GvHD problems but like Steve they were managed quite well with steroid creams and lashings of Diprobase. My main issue is…
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Hi Josh It sounds like the transplant is working well for you. Walking is good exercise and helps to get and keep you motivated. I used to set myself goals every few days trying to walk that little bit further but be aware you have the same distance to return. As I got stronger we used to aim for a local cafe, rest up a…