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...
congratulations on escaping! Day 12 is pretty good! Yes, getting home is totally exhausting, but potter about as and when you feel able and you will improve!
i recommend circular walks, round the house to start with, then house and garden and then out from there, if circular you can cut back to rest easily if it all gets too shattering!
Lots of rest and sleeps as your body has been through more than a major operation! (After my mastectomy last year I slept 9+ hours a night plus an hour in the day too!)
Oh Lynda, it is so good to hear from you........ out on day +12 - rock on you.
So as we all say "take each day as I comes" and yes, the little things that were not that important are magnified out of proportion. A few of my initial things was darkness, the smell of fresh ground coffee and watching the trees in my back garden move with the wind.
When you go to clinic expect the unexpected, on the first one I was caught out and like yourself I needed some of the red stuff so after that I was better prepared with all the 'stuff' that would get me through the 'long wait'
Day +100 will be on you before you know it, rest up and enjoy the 'all new you'.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi all, 4 weeks since transplant. Had low hb since discharge......don't know why they let it hit 7.4 before transfusion last Monday......i was like the walking dead. 2 units and I'm back to having a bit of an appetite. Was sooo sick all day on Monday.... Don't like this malarkey at all. Husband Ray says I'm getting bossy so that's a good sign. Consultant says I'll feel much better in 3 weeks....I'm holding him to that!
I officially hold 2 records locally......shortest admission and largest volume per million of stem cells. I did not rock the sweet corn smell. I'm amazed at how much I didn't lose weight Wise in hospital......the food was rank. Cooked chilled at it's worst.
If I'd have had a gun the seagulls squabbling and whoever was feeding them would have copped it!
So that's Dhap, abdominal surgery, beam and auto SCT this year so far. Foot/leg still tight and ankle painful.
That's all folks
Another day survived
Hi Lynda, thanks for your update...... if it was not for the fact that we all understand that there is a much more detailed story in the background your update should not be so funny, but I have to say that I love how you embrace this journey and kick against all the adversity ((hugs))
goid to hear from you and too, to know your sense of humour is alive and kicking, haha!
Seriously, the anaemia is a pain so I hope those red cell generators in your marrow get a move on and start their work!
8weeks since hospital admission. Slower recovery than I was expecting physically...hampered by my dud leg and vertigo/sickness.
I'm spending longer in bed than I ought to....but it's warm and cozy and I'm comfortable! When I'm upright is when I'm sick:-(
Pet scan and bm biopsy late November....I'm not very optimistic....can't see how that level of disease has been eradicated
Consultant tells me next move would be car-t
They're very happy with how my blood results are recovering and central line came out a couple of weeks ago.
Hope everyone's well and prepared for the miserable winter ahead
Regards, Lynda xxx
sorry you’re not feeling better, but great that the line is out at last. Hope you’re still getting antinausea meds? Ginger can also help, plus the sea sickness wristbands.
Hope the scan reveals better news than you are presently thinking, and at least there’s a plan b!
Got everything crossed for you Lynda, you truly define the meaning of being on the treatment Rollercoaster.
((hugs)) just ((hugs)) xx
Hi all! Saw consultant yesterday for results of pet scan and bone marrow biopsy...still waiting for results of core sample but everything else..... No evidence of disease....no deauville or SUV cos nothing glowing. Does that equate to complete remission? Can't really believe it after the year I've had with chemos, surgery, radiotherapy and auto sct＼(°o°)／. 3 month check ups.
What a wonderful Christmas present!
Went out for a celebratory lunch (and threw up afterwards)
Love to all
Oh Lynda Haffygirl I would take this to be an amazing result and even although you threw it up - worth the celebration.
Great early Christmas gift and it’s not a dodgy jumper........ I am doing my happy dance up in the Highlands and I am so pleased for you and let this news help to make the past years memories get fuzzy at the edges.
Great news Lynda!!
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Great news, Lynda! (But sorry you lost the lunch!)
Lynda really pleased for you and 3 month check ups is even better, could not think of a better early Christmas present for you!
Absolutely the best news Lynda. After the more than 2 years of hell that you have been through, its just wonderful for you to get this result. So pleased for you. You really deserve the celebration - enjoy it and the Christmas to come.
Courage does not always roar..........
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