Please read the house rules and keep this community safe for yourself and others.
Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
-
Hi Nick, I haven't had the misfortune to end up on one of the older machines yet, though they do have them in Nottingham, so I'm hoping I can avoid that. One of the new machines had a malfunction the other week though just after another patient had started treatment. The centrifuge bowl came loose in it's mounting and…
-
Hi Una and welcome from another community champion. I'm pleased to hear your husband is doing well and it sounds like he's back to normal, as far as normal can be post transplant. Steve
-
During my time in hospital I had a thing for midget gems and wine gums. Most visitors knew to bring me a pack, though I preferred the softer ones, particularly when my mouth became sore post transplant. When I got home I was into pork scratchings in a big way and found myself regularly snacking on them when my appetite…
-
Hi Nick, I've just started reading your blog, in particular the one about photophoresis you wrote yesterday (5th June) which is interesting as I'm also having the same treatment for skin GvHD in Nottingham using the same machine. I usually have it on a single needle set up so the blood is taken and passed back through the…
-
We already had a dog before my illness and treatment and the only advice I was given was to be cautious around the dog when I returned home. We don't let him lick us anyway but I probably kept him at a greater distance during my treatment than I used to beforehand. I wasn't fit enough to walk him in the early days after…
-
In my case I think those close to me did understand the importance of not seeing me when they were ill because of the risk of infection to me. Living in the east midlands with most of my family in Yorkshire, they were keen to come and see me if they could, particularly my parents. But I can certainly recall times when they…
-
Hi Ashling, Welcome to the forum. Wow, it sounds like you've been through the mill buut it's good to hear that you are doing well now. I hope that continues. It's good to hear that so many of us that were given 'poor' chances of survival are still here and fighting fit, which might not have been the case only a few years…
-
I didn't have any 'routine' emotional or phsychological support throughout my treatment though I did reach a particularly low point early after my transplant which the nursing staff recognised and referred me to a phsychologist. This was just after being allowed home for the first time after my transplant which I saw as a…
-
Hi Peter, Yes, I've been in touch with Anthony Nolan too and had a really useful email from Amy describing the process for contacting my donor. I fully intend to do this once I've spoken to my consultant next week to make sure she's ok with me making contact. I'm not sure that donors fully realise the good that they do and…
-
I listened to a lot of music whilst I was in hospital. I found it relaxing just to plug my headphones in, shut out the noises of the ward and chill out. It usually sent me to sleep and may was the time I found myself being woken by a nurse or doctor who needed to speak to me or check something. One song that sticks in my…
-
Hi Amy, Being a bloke I guess it's easier to cope with hair loss than it is for a woman. I was surprised how far into my treatment complete hair loss occurred and expected it much earlier, though the white hospital towels did seem to have an increasing amount of hair on the as each days shower was concluded. When my hair…
-
Happy anniversary Peter. I'm still to reach the 2 year mark but thanks to this forum I found out that I can contact my donor anonymously before the 2 years are up and am taking steps to do so. I don't know anything at all about my donor but I want them to know how grateful I am to them for their selfless act. Do you have…
-
Hi Jet and welcome to the forum. Congratulations on your second anniversary. I'm also having ECP at Nottingham, and have to say the team there are great. My GvHD is just in my skin which is an inconvenience more than anything. My skin gets very dry and itchy but the ECP treatment seems to be having an effect. Good luck…
-
Welcome to the forum Wen. A belated happy re-birthday for yesterday. Wow, it sounds like things happened in a hurry for you, but thats just as well perhaps. You were lucky to have a sibling match that allowed the transplant so quickly. It sounds like if you'd had to wait for an unrelated donor you might not have made it.…
-
I love the term 'Re-Birthday' as that is effectively what it is. It is like being born again thanks to the kind generosity of the Anthony Nolan donors. Congratulation Renate. I hope things go well with contacting your donor and you stay in the best of health. Steve
-
I was thankful of a decent TV in the room with freeview TV. As I spent much of my time in bed, most of it was spent either sleeping or watching TV. Strangely, whist my appetite was very poor I found that I enjoyed watching food programmes more than anything - Man vs Food, The Great British Bake Off, and Masterchef were all…
-
Hi George and welcome to the forum. Like you I also had ALL but from day one the target was always to have a transplant as, being older than you, I was at a high risk of relapse. I had my transplant about 15 months ago and it has been relatively plain sailing since, though recovery for me has been slow. Your positive…
-
My own experience was that all medical staff (without exception I think) always introduced themselves appropriately and told me what part they played in the team. I know a lot of people complain about the NHS and its staff but personally I had the best care I could ever wish for. Perhaps there's something about caring for…
-
Sounds great Peter. It's good to see new facilities being created to treat cancer and as a person who normally helps build new hospitals, I'd love to look round the new unit. Please tell us more after you've been. The marathon should be great and I hope it promotes awareness of the register and more people are prompted to…
-
I'm currently at about 15 months and check-ups are still monthly for me, but most are just a formality with a quick chat with my consultant and to pick up a months supply of pharmacy. Last month a plan was put in place to reduce my immuno-suppression which was a welcome step forward. My bone marrow has been 100% donor for…
-
Hi David, As has been said above, everyone's reaction to a BMT is different and your experience will be unique to you. From what I've heard from others and what I experienced myself, there is little doubt that the process takes a lot out of you and is likely to leave you feeling unwell and groggy for a short time…
-
I couldn't agree more. Post transplant I lost about 3 stone, dropping from 16 to 13, thanks to a very poor appetite, nausea and sickness which lasted for weeks. Having the extra weight on no doubt helped. In fact in the induction stages of my treatment I actually put weight on, probably due to an increased appetite because…
-
I'm beginning to wonder what 'normal' is post transplant. Does life ever return to normal as it was pre-transplant or will I always be restricted from doing things? I'm about 14 months post-transplant and in myself, I do feel normal. I have some GVHD complications which manifest themselves in my skin, primarily on my hands…