Hi @sumertime thanks for the update, gosh you have certainly had so tests.
Who would have thought you and @Fullofbeans would be swapping diarrhoea stories. and yes, it is swear-word awful, you lose all dignity.
When I read @Fullofbeans post, 2nd to last paragraph, which says ‘You’ve been amazingly patient’ I read it as ‘You’ve been an amazing patient’. I think you have been both !!!
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Wow you both seem to have been through a lot @Summertime and @Fullofbeans . I remember being an inpatient and some of the indignities well. I hope it’s a while before I go through that again…
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Hope you stay well too, @Franko. X
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Yes @Franko I didn’t expect things to go this way but I’m keeping positive. I am aiming at getting home to see some of the spring flowers 
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Hi @Summertime spring flowers at home seem a good aim to me !!! xx
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Yep - spring flowers blossoming are just beautiful x
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Hi everyone, hope you are all doing well.
Just a little update from me. Had appt with transplant team last week. They were great as usual. They had planned id be in for end of April for the transplant but when they realised my son has his exams early June we all decided it would be better for us as a family to have it mid June once he is finished.
Still a mis matched doner so 9/10 match but thats not going to change now.
In the meantime another 3 rounds of Aza.
Am so relieved to have a plan now. Am sleeping so much better too.
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oh @Ashob you must b e so relieved to have a plan that works for you and the family.
It sounds that you do have an absolutely great transplant team.
What good news that your sleeping is so much better now.
All of you look after yourselves, be kind to yourselves and spoil yourselves
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That’s great news, @Ashob - and so fantastic they can accommodate your son’s exams.
I’ve read of people (on various sites) that have had good results with a 9/10 donor.
It must be a huge weight off your mind having a firm plan. And in the meantime, I hope you have some lovely family times, plenty of delicious meals to build yourself up - and all the sleep you need.
Best of luck. X
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Having a plan makes things so much easier! It’s really good that you are able to plan it as wel so that it supports you and your family! A good nights sleep really does keep everything on a more even keel.
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Thank you for that @Fullofbeans.
I have never read or talked to anyone who had a 9/10 donor.
I have known for 4 years but always hoped when it came to the time they might be able to find a 10/10. In saying that they said 15% of transplants done a year were a 9/10.
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Hi Everyone
Head is melted now 
So last weeks meeting was with the transplant team and I felt it had gone really well and was happy we had a plan that suited my family.
This morning i had a meeting with my consultant. She is excellent too but when I told her about “the plan” she said she was just a little hesitant about delaying. If the Aza did stop working over the next 12 weeks I would need a course of intense chemo prior to going for the transplant. Then she said that if the transplant consultant was happy with the 6 week wait then that was good enough for her.
I had asked if we could go away for a few days and she said she thought that was a great idea as long as it was planned around my treatment.
My head is melting now. I dont want to do anything that puts me in more danger and am afraid now I have made a mistake.
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Hi @Ashob
Well, rather sadly on my part, I’ve looked at just about every site known to man related to Acute Myeloid Leukaemia survival (I was slightly obsessed, at one point, perhaps understandably…) so maybe that’s why I’ve seen a few people mention their 9/10 matches. I wish I could tell you where I’d read these comments, so that you could perhaps connect with someone, but it’s a bit of a needle in a haystack. It does often help to talk to people who have experienced the same issues you have, and come out the other side. Start a thread here? Surely someone on this site has also had 9/10-match donor? Or perhaps it’s not something you really need to dwell on at the moment?
Gosh, 4 years - what a long time to ponder a potential stem cell transplant! You must be almost relieved it is now imminent. Possibly?!?
Wishing you tonnes of luck- although I’m sure your transplant team will play a far bigger part in it all.
Please let us know how you are once it’s underway/completed.
All the best.
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Just read your 2nd post @Ashob. Why not give your transplant team a quick ring? (you should have been given a number for a transplant coordinator nurse, or similar, and part of their role is to help you in situations exactly like this.) Tell them what you other consultant said, and the fears this then raised, and they can either reassure you about the date/delay, or not. Tbh, my transplant team have been fairly blunt with me, and it seems unlikely any transplant team would be swayed by a patient’s family needs to embark upon a treatment path that they were not entirely comfortable with safety-wise. Give them a call, and hopefully they will tell you this.
Good luck.
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Thanks for that. That’s great advise @Fullofbeans and I do have a direct number for the transplant co ordinator so I could contact her. Will give her a call on Monday.
They did leave the decision up to me but they were saying its only 6 weeks of a difference which made me feel like that was OK.
Most of me feels decision made now get on with it but Im just worried now its not the decision my consultant would have made but then again she is not in the transplant team aghh!
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Hi @Ashob it’s those few little words that niggle away at us aren’t they.
Try not to ‘niggle’ too much over the weekend and please do let us know what your transplant team say on Monday.
Look after yourself and try and enjoy your weekend, we are here if you need us
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Yea - definitely contact them on Monday. Have all of your questions ready. Please let us know how you get on x
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You should definitely contact them @Ashob if you’re worried but I remember with my transplant they were anxious that I shouldn’t delay but I probably had it 2 or 3 months later than originally planned. I realise though that it’s not an exact science for everyone. I wasn’t on any drugs prior to transplant and I was a self donor. I’m sure your team will reassure you though and you should definitely take that break if you get the chance for all of your family’s sake. I only had me to consider. Hope your son’s exams go well too.
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Yes, them saying it’s only 6 weeks difference does sound like they think that’s ok.
Actually, now I think about it, my transplant was delayed by about 5 weeks because of large covid numbers at the transplant hospital. My haematology consultant at my first hospital said I might have to have a round of ‘holding’ chemo to keep me in remission while I waited - which I was desperate to avoid (I’d had two rounds, and wasn’t keen to repeat the experience!) It didn’t happen, thankfully. And when I mentioned this to my transplant team, they did sort of say, ‘Tut, what does he know? We’re the transplant experts here,’ - which made me quietly chuckle to myself, that hierarchical jostling goes on, even amongst life-saving equals. I hope that eases your mind until you talk to your co-ordinator.
All the best.
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Hi pinging @Summertime
How are you? What’s happening? Sending huge love.
Xxxxx
Any updates from others too?
I’m doing ok, started on baby jabs and will have another one on Tuesday. Oral chemo going ok though the anti nausea drug makes me constipated and that’s made my poor bottom so sore. But I feel my energy levels have done so well - I just wish people would still be Covid aware - there were still 337 deaths yesterday and over 700,000 reinfections. So (apart from hospital) I only go outside for walks and am still fully masked near people 
Even if they aren’t Hopefully I’ll stay safe.
Hugs and love to everyone
Xxxxx
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