hi,
Thank you for letting me join this group.
I am 1year 11months post allograft bone marrow transplant and about to have my final (I believe) biopsy!
My anxiety and low mood seems to be getting worse as does my fatigue. It could well be that I am doing more but I feel I used to walk a lot further than I do now. I get breathless very quickly now. My stomach has always been an issue but sometimes the sickness and diarrhoea comes over me out of the blue and is uncontrollable. Just recently I got caught short on a car journey and my son had to witness me on the side of the road.
Is this just me or does anyone else experience this?
Thank you for any reassurance that I might work through this.
Wendy
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Hi Wendy12345 I’m not sure how to respond, it sounds like you’re having a tough time. I guess I’m lucky relative to you. I’ve got Essential Thrombocythaemia ('ET') and so far I haven’t been impacted too much. I can relate to the fatigue and occasional low mood, I’ve put that down to medication ( hydroxycarbamide). I don’t walk as far or as often as I did and lack stamina which I really don’t like. However I still think I’m luckier than a lot of people.
Thanks for sharing your situation it does help reinforce the fact we are not alone.
All the best, Kevin.
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Yes, you are right that we are not alone in this. I wish you lots of good luck going forward.
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Hi @Wendy12345, I know I’ve already said hello in the introduction thread, but welcome again, and thank you for sharing this. That moment on the car journey sounds awful, I’m sorry you had to go through it - though I’m sure your son understood. With the biopsy coming up, you’ve seemingly got a lot on your shoulders.
Kevin’s right that you’re not alone in the fatigue and low mood as those are things a lot of community members on the forum here recognise when you’ve been affected by blood cancer (myself included).
But the breathlessness and the sickness and diarrhoea coming on so suddenly and uncontrollably sound like they’ve changed recently, and this far out from your transplant, that’s worth your medical team hearing about directly rather than just working through on your own. It doesn’t have to mean anything worrying, but it’s the kind of thing they’d want to know about, investigate, and help you manage.
I shared a couple of fatigue-related resources in my other reply, but will link them again just in case anyone else in the future finds this thread and is in a similar position: our webpages about Fatigue | Blood Cancer UK and a thread here on the forum: Ask the Nurses – Managing fatigue
Our Support Line is also there if you’d like to talk any of this through, including the anxiety around the biopsy - 0808 2080 888 (option 1) or support@bloodcancer.org.uk. It’s run by our amazing Blood Cancer UK nurses, so they can answer clinical questions you may have, too.
Keep posting whenever you need to, we’re here.
Ceri - Blood Cancer UK Support Services
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Thank you Ceri,
I have just phoned my team who have given me some advice now.
Thank you so much.
Wendy
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