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Life-limiting illness

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Original poster

Bone marrow transplant

139 replies

21jlb · 01/12/2020 15:35

Hello,
I have been told today that I have an issue with my blood and have to have a bone marrow transplant to try and stop it turning into leukaemia. Has anyone had this transplant before? If so I could really do with some advice on this.
Thank you.

OP posts:

BillieSpain · 31/05/2021 08:41

I was also thinking about you this morning as it is June tomorrow, so not long now.

Hope you're feeling ok and have got plenty of rest (or as much as possible!)

MyNameIsArthur · 02/06/2021 22:15

Hi don't worry about replying if you're not up to it. Just wanted to say we are all thinking of you and rooting for you

Original poster

21jlb · 13/06/2021 08:56

@MyNameIsArthur
Hi - no they delayed it again until the 22nd June. They said it’s all to do with the date matching and using the same donor.
Before I was going to have chemo and radiotherapy then the cells on the 5th day but now just having the chemo and cells on the 8th day.
But in a way it’s worked out with it being delayed as it’s given me time to take the kids out in the nice weather and go places now that restrictions have been lifted.

OP posts:

Original poster

21jlb · 13/06/2021 08:57

@BillieSpain I’m doing well thanks - just had it delayed. Not had a chance to come on here to see messages - but thank you for checking in on me x

OP posts:

MyNameIsArthur · 21/06/2021 21:58

Hi sorry, not been around. Are you still on for tomorrow? Glad the delay meant you got to spend quality time with the kids in the nice weather and with restrictions relaxed. I hope you are all set for tomorrow and as I've said before, we are all thinking of you here and wish you all the best. If you feel able to and you want to, keep us updated, but understand if you don't. Also, we are here if you want a chat or to let off steam. Take carex

Original poster

21jlb · 23/06/2021 10:08

@MyNameIsArthur yes I came in yesterday and treatment has started. Have got treatment for 8 days before having the cells.
Finally getting there!

OP posts:

Sprig1 · 23/06/2021 10:17

Good luck with your treatment. You must be relieved that it's underway?

MyNameIsArthur · 23/06/2021 21:48

Wow! After all this time, you are finally there and have started your treatment! I hope you are okay and feeling well. It was the same for me - a week of chemo and then received the stem cells. What is your isolation room like?

Original poster

21jlb · 24/06/2021 16:59

@Sprig1 yes so relieved, it’s been a long time coming. Been hard saying bye to the kids each time, but fingers crossed this is the last long stay.

OP posts:

Original poster

21jlb · 24/06/2021 17:02

@MyNameIsArthur my room is the same as the first one I stayed in when I initially came in for chemo.
It’s not as nice and roomy as the one I was put in the last time and no view, but I’m on my own so it’s fine.
DVD player doesn’t work, but I have a portable one.
Just want the time to pass as quickly as possible. It goes so quickly as home, here it’s like where time stood still.

OP posts:

MyNameIsArthur · 24/06/2021 23:14

That's a shame there's no view. Is nice to gave some sunlight coming in. I had a window in mine so was lucky but the view was of air conditioning units on the roof of a building below and not much else. Are you hooked up to a drip now? That was one of the hardest things for me . The time does go quickly though. I was initially told I would be in for 6 weeks but was out after 22 days when my blood counts started to move upwards. I hope youre feeling well x

MyNameIsArthur · 27/06/2021 16:03

Hi how are you getting on?

Original poster

21jlb · 27/06/2021 16:10

@MyNameIsArthur I’m doing ok. Today I’m going from feeling queasy to starving hungry and craving foods so badly.
On a drip now for the next 48hrs then the cells should be on Wednesday. So that’ll be one week down by then. They’ve said 3-4 weeks roughly. Just ready to go now.

OP posts:

MyNameIsArthur · 27/06/2021 19:53

Glad you're doing okay apart from feeling queasy. I think if you're really hungry, eat when you can because there's a good chance your appetite will dwindle soon. Mine did and it was a struggle to eat then. I managed drinking milk and eating petit folous to keep me going otherwise they said I would have to go on a feeding tube which I didn't fancy. Are you allowed any family visits?

That's really not long now. I hope it all goes well and to plan. I imagine you just wanting to get on with it now. The time will soon pass. Are you keeping a note of your blood counts?

BillieSpain · 28/06/2021 12:28

Mumsnet logged me out for some reason so I got no notifications, I am sending you lots of love and hoping you are getting through as best as possible.

Thoughts from Spain... you are on the road now, which is good x

MyNameIsArthur · 29/06/2021 20:16

Good luck for tomorrow. Hope you're okay

Original poster

21jlb · 30/06/2021 10:29

@MyNameIsArthur due my cells today. Feeling so ill though, hardly eating or drinking and feeling constantly sick. It’s become so much harder in the past few days, had quite a few side effects from the chemo.
My blood levels are dropping and are on route where they’re meant to be.
It’s so much harder than I thought it was going to be compared to the chemo last time, and I doubt if I’m even through the worst of it yet.

@BillieSpain thank you x

OP posts:

ceecee32 · 30/06/2021 10:37

Good luck for today. I haven't posted before but had my stem cells in Feb 20.
The conditioning chemo was the worse I had. I stupidly thought that once I had my transplant that my health would miraculously improve.
The tiredness and lethargy is something that you can't really describe.
I am still recovering 18 months later but have had infections and other problems.

I hope that you have a less bumpy journey than I have had but you will get there in the end.

MyNameIsArthur · 30/06/2021 18:23

I'm so sorry you are having to go through this. What you've described is just how I remember it. It is so unpleasant. Are you on anti sickness medication? I remember someone saying to me you have to get this sick first in order to make yourself better for ever. Eating and drinking is really hard but you have to push yourself to eat and drink. I found it hard drinking water but instead found drinking milk easier. It helped kept my energy levels up a bit and was good for rehydration. Yoghurts also helped. That's good news your blood levels are dropping now. The chemo is really tough. It's high intensity chemo so harder than the chemo you had before. For me, my transplant day was the day I felt at my worst and couldn't even manage getting out of bed. The next day I perked up a little. Then there was the mucositis as the blood levels dropped towards zero. I was put on a morphine driver but after a few days it disappeared, and I started to feel much better. Have you had your cells now? I understand how you must feel really crap today but in a couple of weeks you'll likely be on your way home again and being with your family. We are all thinking of you and hope you'll feel better soon

MyNameIsArthur · 02/07/2021 17:53

Hoping you're okay but don't worry about replying as guessing you are struggling and feeling grotty right now

MyNameIsArthur · 04/07/2021 22:52

irresistibleoverwhelm · 04/07/2021 22:57

Only just saw this thread as it’s bumped and read through it - I have some experience with a close family member having gone through the same thing. I do hope all is going okay for you and that you’re recovering as smoothly as possible

Startoftheyear2021 · 04/07/2021 23:28

Thinking of you OP 💐 and also you, @MyNameIsArthur you are a very special person and it's been lovely reading the amazing messages you posted.

MyNameIsArthur · 06/07/2021 21:17

Aww bless you @Startoftheyear2021 . Thank you. Am just hoping OP is okay. Not really expecting her to reply at this stage. I remember when it was me at this point , I felt so unwell and had no energy and struggled with everything. Everything was such an effort. So we may not hear from OP for a bit but still concerned she is okay.

BillieSpain · 06/07/2021 21:56

Yes, thinking of OP

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