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...
I'm the opposite of bored right now and I think in your position I'd be freaking out about the graft failure so well done for being bored!
Not going to write much but I wanted to suggest that if you've got a smartphone thing you're playing patience on that "Cut The Rope" is good fun and ought to fit the bill; lots of straightforward little puzzles, none of which are *too* mentally taxing - although the odd one takes a bit of thought and practice.
If you're doing it old school with actual playing cards...well patience is about the only thing I can think of that you can play on your own!
As has been said, that you're bored means you're healthy enough to be bored so I say long may that be the case, and that your new transplant kicks in quickly and well!
All the best,
Hi, thanks for replying, yes I guess it is a leukaemia thing,
I was feeling quite sorry for myself having these last two, but hearing about your Mum - now I worry I'm not having enough!
She's lucky to have you, my daughter is in Hong Kong so not as connected with my treatment as she'd like to be. Hope your Mums doing really well,
love Jackie xxx
Hi Gabby, hows it going?
Adnovirus? what is that and are you ok?
Are you having more conditioning treatment for the 19th?
Just to let you know I'm thinking of you,
I'm from your part of the world before I moved to Dorset - Weston-Super-Mare! Miss Bristol, its a great city,
drop me a line when you feel like it
love Jackie xx
haha i dont think you need to worry... every protocol for each type and subtype is different so i wouldnt worry. She had to have them a lot on her 6 months chemo prior to transplant .... think she will be glad when she doesn't have to have any more of them ;)
Aww thats really kind... that must have been hard on you both her being so far away... has she been able to visit? Do you have any other family close by?
Thank you - you too xx
I am new to all this and was wanting to chat with Jackie, but not sure how!!!
Sorry if I am interupting a converstaion about something else, but I was reading an old post regarding moving from Poole to Southampton. My partner is the one with ALL, and we had our first appointment at Southampton yesterday regarding the stem cell therapy, this was daunting in itself, but the hospital is so busy, it was a scary place. We are used to being at Bournemouth. So, I hope you are doing really well, but I was also wondering how the transition from Poole to Southampton went?
yes, she's been over three times this year (expensive though !),
my son lives locally - he was brilliant at all the practical stuff, making me laugh and teaching me to play Blackjack in hospital, I think daughters fill a different role though, as you're doing for your Mum, and I'm sure its taken a toll on you too,
Take care and have a great xmas, albeit alcohol free for some of us :-(
gosh that initial meeting is scary isn't it! Did you see Dr Orchard? (Or Dr Doom as we like to call him),
I had exactly the same feelings as you about Southampton hospital as I had all my previous treatment at Poole, but to be honest, I feel more comfortable there now than I do at Poole! Familiarity I guess.
Have you had a look round C6 yet? Its very high tech with plasma tvs and wi fi, all the rooms have views, Have you had a transplant date yet?
Please ask me anything, I remember how I felt in those initial stages - I'm sure I may bump into you at some future point as I still attend clinic there,
Yes i can imagine - but worth every penny :)
Aw thats great that your son is close by - and men are sometimes much better at the cheering up side of things :) At times it has taken its been hard but its the way i have coped by throwing myself into it 100%.
thank you - you too :) I am sure you will be able to enjoy a couple - mum never got told otherwise by the consultant so often enjoys a couple ;) oooops maybe thats a question we should ask.... or maybe best left being unanswered as we may not like their responce ;) Take Care xxxx
I like your thinking......after all whats Christmas without Baileys... I mean seriously..
;) too true..... i think after everything you have been through you can enjoy a couple at christmas :) - its like a pudding its so good! xx
That first transplant meeting is what sends you off to the Baileys, it is really soooo scary!
But the specialist units are where you want to be, they are the most experienced at getting you through this traumatic time, for that's exactly whet it is.
I stayed up in daughter's house to be able to do the daily care…..it was about a month, she had a donor transplant. Not easy but do-able, and her hospital were simply brilliant! I even had a through-the-towel shoulder and back massage, smashing!
Take care, and keep posting
You are right there Moomy!
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