Bone marrow transplant soon

Happy re-birth day Alastair. I hope all is going to plan. Thinking of you :smiling_face_with_three_hearts:

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Thanks everyone.Well day 1 went well.Had my transplant of 2.3 million cells,took around 20 minutes :+1:then the rest of day was rest and keeping up the required drugs.No issues overnight,today I’ m ready for round 2 then lots more rest.BW Alastair

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@AlastairC I am glad treatment is going well, as you say rest is so important, your body is going through a lot medically and emotionally.
Be kind to yourself

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Thanks for the update Alastair. Plenty of rest to allow those cells do their job sounds good to me. Thinking of you.

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Hi @AlastairC I’ve been thinking about you, how are you doing?
Be kind to yourself

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Good afternoon all, sorry for the delayed update.So last Thursday aftyI had my 2nd set of cells,total was 3 million,time to transplant approx 50 minutes.Thursday night I ran a high fever but lots of good drugs and sleep helped.Sjnce then it’s been rest and regular monitoring.All vital signs are in the zone :+1::+1:I saw my consultant today and she’s happy with progress to date,May start reducing some drugs this week.I can get tired but no other real side effects,I sleep in the afternoon when it’s quiet as well as at night.The staff here are fantastic ,nothing is too much trouble for them.Thanks all for listening,will update later in the week BW Alastair

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So far so good Alastair :+1: sounds like you are in great hands x

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It sounds as if you are doing OK @AlastairC and I think sleep is so restorative, you and your body are going through a lot.
Your medical team sound brilliant, so, so important aren’t we lucky to have such caring, dedicated medical profession.

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Alastair
Sounds like you are doing well. Making sure you eat even if only a little but often and rest will help you recover quicker.
After my transplant I was okay for a week didn’t really have any issues then I fell apart 1wk post transplant to the hour, sick and really poorly. At this point it was hard to keep my head focused but I worked hard to try to take fluid and food in despite how hard it was, and quick it came back out. I kept telling myself even though how bad it is, at least my body might be getting some goodness.
I was amazed at how well my mind brought my body back, by Sunday I was not really aware where I was really, needed help to the bathroom and back, but I kept positive and pushed on and by the Tuesday I walked up and down the corridor about 3 times and kept my lunch down for the first time. Then my blood levels started to rocket each day from then on and I was soon let out event thought I got an infection the day before discharge but they were confident it was minor and I could tolerate it so sent me home with great antibiotics.
I had mine at Oxford and the staff were wonderfully like you are describing your team are which I feel helps you with the process.
When I got home I went a bit backwards for a couple of weeks but I was told that would happen but then I again started to improve dramatically.
May seem I have written this to make it about me but I truly haven’t, I hope by me sharing this it will help you understand your process and will allow you to relate a bit and if you do (hopefully not) fall of a cliff you know somebody else has at least bin this if not more before us, and you just need to keep positive and push on and you will recover.

The power of a positive mind

(I have never been one for that saying before but I due truly believe in it now)

Best wishes hope all goes well and if you do need a chat or message feel free
Adam

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Hi Adam
My OH is currently undergoing his work up for stem cell transplant mid June.
He is also under Oxford and its good to hear your description of the team. They are new to us as his treatment so far has been in Milton Keynes so its about building trust with new professionals.
Any advice for him or us as we prepare?
Thanks Debbie

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Hi @AlastairC I have been thinking of you, how are you doing?
Take care of yourself

Hello Debbie
I was under a team in the midlands based at the QE, but my consultant new DC Karthikeyan and as it was the height of covid I was registers at Oxford (Churchill) and Queen Elizabeth hospitals to see which had a slot first. Oxford became the one.
The team seem really joined up, knowledgeable and caring like my local team so the transition over for transplant was simple and felt easy.
For me I took lots with me, my IPad with lots of movies saves on it and set up to watch TV, puzzle books (I’m not a great reader) and some snacks, health and not so healthy, small things that you can eat easlily like biscuits, fun size chocolate bars, small jelly & custard pots.
This kept me going when I was able to concentrate and the small food items helped as when I mentioned I was struggling a small biscuit or jelly pot helped put some goodness in me of a kind (well that was my thinking) oh and I took my own pillow (I saw others with other own home comforts like blankets etc) it made sleeping that bit easier reminded of home.
I read all the info given and I watched this great piece on the myeloma web site they explained transplant. I NEVER goggle, my consultant told me this at the start and I have stool to it, which I feel has kept me in great stead. I just use NHS, Blood Cancer UK or Myeloma web sites nothing else.
Not sure if you have children and the age but my daughter was 8 when I was diagnosed, to this day she knows about my illness and what I am having done but we haven’t used the word Cancer, (might be wrong or right but each person has to make there own decision) we did this as there is so many adverts on the tv and on kids tv it’s surprising what you see when you have the illness to what you didn’t before. We felt it was to hard for her to see it all like that, but we have been 100% open and honest with what has been happening about, stem cell harvest, transplant, treatment days etc she know about everything that gone on and going on, which made talking to her about it easily. If you do have smaller children you need to prepare them for the fact you may have a few days with not being able to talk to you husband when he goes through the process, but you might not, we all react differently but I struggled to communicate for a couple of days when I hit the bottom, but we had prepared my daughter that she might not be able to talk to daddy every day and say good night every day, which we were very pleased about when I got very ill.
I do hope they helps and doesn’t scare you, we all react differently and I talked to 2 or 3 patients when in Oxford in passing (wasn’t allowed to mix due to covid) and they all had different symptoms with the process.
Do ask you team questions, I have a book and my wife and I always site down the day before and appointment and we write our questions down and ask them, anything even what you think is daft, if it’s in your head as the team they will answer and it will then make you feel better, my team always help and answer or if they can’t they come back to me later to advise when found out.
You know where I am if you need to ask anything else, if I can help I will try.
Best wishes hope it all goes well and would be good to here the progress.
Adam

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Hi All,1st the good news :drum::drum:my consultant is very happy with my recovery and has taken me off the IV drips.So as I can take all my drugs in tablet form she’s letting me go home tomorrow/Friday :+1::boom:I’ll be attending as a day patient twice a week for the next couple of months at least.s I’m sure you can all imagine the last few hours have been incredibly emotional,at one point I was convinced I’d dreamt her comments :thinking::smile:I still time some time to process everything and will update again in a few days.Once again many many thanks for all your support :+1::sun_with_face::heart:

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Wonderful news @AlastairC delighted your getting home. Bet you are looking forward to your own bed and recovering with your family. Thanks for keeping us updated.

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Great news @AlastairC so emotional isn’t it, I can imagine wondering if you had dreamt it.
However I think being a day patient can be exhausting.
Yes, perhaps take some time and space for yourself just to process and come to terms with what you have gone through, you have gone through a lot emotionally, physically, medically and practically.
Those batteries need replenishing, look after yourself and be kind to yourself

Ive been watching your progress with a keen interest Alastair. Thank you for sharing and fingers crossed you will go from strength to strength.

Adam all your advice will stand us in good stead as we have a provisional date for admission to Oxford of 16th June.
Debbie

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@Debbie36
How are you getting on has today turned into the day for the start of the treatment?
Oxford were great to me and a very nice place with some great staff to take you through the journey. Feel free to ask any further questions you need and would be good to here the progress.

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Yes Cannon i dropped my OH off this afternoon to the day unit for his first chemo and he is going upto the ward this evening.
I was just commenting to him that every time he presents to any staff member ne it medic, nurse or receptionist he is always greeted as if they know him and are expecting him. That means a lot.
I will absolutely take you up on the info as i am sure i will need it at some point.
Thanks again Debbie

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It sounds as if your OH is being well looked after @Debbie36 so now is an opportunity for you to really look after yourself and be kind to yourself

@Debbie36
That’s great news on you OH, yes they were great knew me by name and made me feel at ease, always able to answer any question I had and looked after me great so hopefully your PH will experience the same. @Erica is right make sure you get some time for yourself, talk to your friends and family so you don’t become isolated while you OH is away, your OH will need a lot of support when they come out of hospital as they won’t be able to do a lot at first, walking up stairs will be a challenge but it will improve quite quickly if the amount your OH is measured each day and week.
Best wishes to you OH and you, remember the offer if you need it.

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