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 can't believe my wife is still in hospital following her FLAG, now been 34 days. 10 days,ago was doing so well and looking to come home once her neuts started to recover. These are still flat and having temp spikes daily, given soo many different antibiotics and penicillin to reduce temp and slight fever. She is also having injection in stomach nightly to boost white cells. Just want hef home before SCT due in next 2 weeks. Add to this it's our first wedding anniversary today...another celebratory day spent at her bedside to go along with my birthday, Christmas, Valentine's, Easter, this is soo cruel and evil!!!
Hi Nick, cruel is a good words to use.
For a good number it unfortunately can be a hard journey and with this cones missing the special family times.
I kept focusing on seeing my two new born granddaughters that arrived during my two SCTs
I had a blanket ban on seeing them for 3-4 months post SCT but it was a great first meeting. I can’t remember my 60th birthday - we celebrated it two years later and it was a great day. Our 35th wedding anniversary was a non event but our 40th just past was great.
Its all about the greater good at the moment Nick, but keep the dreaming going as it’s somewhere to hang the future together.
A man ((hug))
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
FLAG is powerful stuff, but it needs to be. I was in for eight weeks after my second round of chemo (CPX351) and there were no signs of any movement of neutrophils until day 46. Then they crept up really slowly.
It would be lovely to have your wife home for a bit before the transplant, but in the great scheme of things my consultant said that it wouldn't matter from a medical perspective if I went straight to transplant without blood count recovery. The conditioning chemo for the transplant would just wipe them all out again anyway.
Anniversaries and birthdays are just dates. You can look forward to celebrating them properly when your wife is well. I should have been in Melbourne and Sydney for the Ashes Tests on my 60th birthday. Instead I was recovering from the transplant. As Mike says, you have to remember the greater good. There will be times to celebrate once it's all over. I'm enjoying all my catch up celebrations now and the time will come when I can go to Australia after all. England might even win next time
Hugs, Sheri xxx
yes leukamia/blood cancer is very cruel, my daughter was diagnosed 5 days before her 30th birthday last year and her daughter was only 4 months old so after a joyous time of her first child she had to cope with ALL - but she had her transplant in October and she’s doing well, and she is having a belated 30th birthday party in June. So although it seems a bit bleak at the moment, it does get better x
all best wishes to you and your wife x
cruel is indeed the right word, but yes, dates and anniversaries and so on are only just that, dates.
Just over a year after daughter’s allo there were so many illnesses, both she and our son were then on their own so we were hoping to have a quiet family Christmas all together, but that got put back so often it got eventually celebrated towards the end of the following February! At least we all got together and had a lovely family long weekend to do so.
Hope and hugs xxx
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