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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Hi just wondering if anyone can give me some advice. My mum is due to have an allo transplant - we are still waiting on whether she has a donor and when it will happen. (only had initial appointment with bone marrow consultant- next one is in 2 weeks) We were due to go on holiday in May and we know we will be cancelling this and are hoping to postpone it till later in the year. I still want to give her something to look forward to but i was wondering how long after the transplant is a realistic time frame for a holiday? I know everycase is indiviudal but just wondering how anyone else have found this? Thanks
Hi thank you that gives me some idea to pre warn her before we ask the question to the consultant .. she is a bit down as we had booked a family holiday in lanzarote for her 60th so we had said delay till later in the year till she is better so was hoping would still give her something to look forward to. You are right as will need to be careful as would be awful if she got poorly whilst abroad and at least here we can always get to the hospital. We have our next appointment on the 18th so hoping to find out if she has a donor and well it will happen... had the first scary one a couple of weeks ago where they go through all the risks. I think after leaving that appointment we had so much to take in we forgot to ask any questions! xxx
The team should be able to answer questions, I hope you had a nurse specialist in the appointment with you? It might be possible to contact them or at least the consultant's secretary if you have a burning question that you forgot to ask then. We spent a whole hour in, that first appointment time, too, and it is scary and difficult to remember the things you want to ask.
Could it be possible to bring that holiday forward while you are all waiting to find out dates and donors? It might help her fitness level so she is stronger to go through this. But again I would talk to the team if this is something you might consider.
but there is hope at the end of that tunnel, honestly.....
big hugs for you all xxx
Hi thanks again for replying its great to hear from someone who understands what we are going through!
The team is amazing, she has been at james cook for treatment but going onto the freeman in newc for transplant stage and the nurse contact is amazing we have been given 3 designated nurses dealing with her case who we can contact at any time but i have been holding off or contacting them until the next appointment as they are currently looking at finding a match so holding off on asking the post transplant questions till we know its going to happen. We have found out my uncle is not a match which i dont think is a bad thing as he is over 60 so they are currently looking at the register. She has gone in today to boro for high dose methatrexete and asparaginse (second time on intensification stage) and they have asking her today for further blood samples (EMV?? i think thats what they said) indicating they are looking at matches and testing further. Fingers crossed! thanks for replying and for your support xxxx
Yep just found out that was the blood test she had! So many names of things it all starts getting confusing :) Thank you and next time i post i hope its to tell you she has a donor :) xx take care xx
awwww thank you thats great to hear from you both and hear your stories. Julia - I am glad your husband is doing well, that sounds really positive and makes me feel a lot better about our appointment next week :) 3 matches is amazing so that really gives me hope :) I am not so bothered about going away i just want to give my mum something to look forward to but that sounds like a good time frame afterwards so hopefully we will get to Lanzarote to celebrate her 60th :) Thanks again Helen xxx
Daughter went off on a six week tour in the USA 10 months post transplant, too, the doctors agreed as she was well, and although her red blood cells are still not behaving (that's her final problem we hope) she did cope and flew back during the tour for a further transfusion!
So yes, there is hope out there!
Aww thats great to hear and i am pleased she is doing so well :) Must have been heard for you with her travelling abroad and worrying about her :) Hopefully we have some more news next week and can get cracking on the BMT xxx
Thank you, she is doing ok though this whole process takes longer than we first knew, but there are advances all the time, they are getting better at all this with every one they see and do.
Keep posting, hugs for you xxx
We saw the consultant on Monday and he gave us various timescales but we have decided to put back going abroad to March 2014 and plan a low key UK holiday at the end of the year. Hoping the transplant will happen in about 4-6 weeks... still doing match testing so nothing confirmed as yet. They have assured us that a lot is going on behind the scenes and that we will get a phone call in the next week or so. All becoming a bit real and scary now! How did your daughter cope on the run up to the transplant? I do feel positive as the more i read i feel its the best option for an overall cure but it does become scary when it starts to feel real! xxx
Hi, she busied herself 'doing stuff' I think. It was very, and still is a little scary though less after a year post, but hopefully you and all the family will have access to someone to talk through problems, thoughts and so on.
Yes, a lot will be going on, they do work on lots of different things to do with the match, we had three but they found one was possibly pregnant, one couldn't be traced, so the third was the one they used, a 'big German 43 year old man' ! In fact they said they do prefer male donors as they don't carry antibodies formed during pregnancy.
Keep hoping, keep strong, but look after you too.....hugs xxx
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