Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi I can hardly remember what it was like almost a year ago when doctors told Paul his aml had returned after 5 years.
The first few months of chemo radiotherapy hospital visits emergency admissions up to the transplant in July are a blur
Then the transplant and that went well. Of course some ups and downs and a few unscheduled appointments.
Some gvhd and ongoing changes in meds but he looks better now than he has done for s year
So hang in there - I think the worse thing is they know how they feel and are being monitored and treated but you are the one staying strong and trying to be positive whilst often mentally and physically shattered.
We are even close planning a trip to Canada in may as he missed it last year. Only downside is cost of insurance but it is a small price to pay to see him looking so well.
Really hope today's trip helped you both, sea air plus a hot drink = chill time which normally is exactly what you need in these early days....just tell yourself it does improve, in a year you'll look back in amazement at how far you've both come!
It was lovely to get out even though the weather wasn't very kind to us.
I was so tired last night that I was in bed asleep by 7.30pm, way before my husband! It's not supposed to be like that, is it? (In my defence, I have ME and it is flaring up quite badly at the moment). Aren't I meant to be looking after him!?
My dear Custard , remember that you are very important too and I believe it is absolutely ok that sometimes he will take care of you during this journey , don't you ever , even for few minutes feel guilty of that.
You have to rest and re-charge your batteries so extra sleep or moments when he can make you a cup of tea are very important too so relax xxx
I am happy for you that u had nice time and hopefully you both rested your minds a bit
take care of yourself my lovely xxx
That sleep must have been needed! Yes, you are looking after him, but it's a partnership so there have to be times he does a bit of looking after you too!
So glad the sea air allowed you both some enjoyment even if the weather wasn't too kind, for me I love the sea in bad weather, I just love watching it! Maybe it was breathing the sea air in that made you sleepy!
Update on husband's progress.....
Today (Day 37) we got the Day 30 chimerism results....100% on ALL THREE BLOODLINES!
Counts are all good, Hickman Line out next week.
Hosp visits down to ONE a week.
(OK, I know it is all so far and we are not counting chickens, but today is a good day in the grand scheme of things)
Sounding like it's better than you were worried about! Cautious good news, then, Custard....
Stay strong xx
Awesome news! Really pleased for you! xx
Wahooo !!!! So happy for you my dear , glad all is going forward , still keeping my fingers crossed ,
Well done :*
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