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...
Hello, I’m the daughter and carer to my mum who has Acute Myleoid Leukaemia. She’s been through 3 cycles of chemo at our local hospital and is very close to having her transplant at UCLH (delayed as had to have 5 teeth removed over 2 treatments).
She’s initially going to be admitted under ambulatory care, staying at the cotton rooms. We’re had a look and the facilities look great. My question is as a carer will I need to be with her 24/7 or will I be able to leave her alone for any length of time? I’ll be staying with her so definitely not overnight but as I’m on my own I just want to know if I’ll be able to have small-medium length breaks or if she must have someone with her at all times.
Also I know they said depending on how you feel you can go out in the evening, how far can you go/is advisable to go?
Hi Lesleyno and welcome across to this part of the Online Community.
The Cotton Rooms at UCLH look beautiful and a great addition to patient care and wonderful for folks going through Stem Cell Transplant (SCT)
Looking back at some of your early posts your mum is possibly receiving a partial matched Allo SCT with cells from her sister - is this still the case?
I am also assuming that she will be staying in the Cotton Rooms during the conditioning part (the chemo to take down her immune system) before she goes into the SCT unit and gets her Stem Cells....... mind you in some hospitals things are being done rather differently now so can't make any assumptions...... what has your mum been told?
I see that the Cotton Rooms have a 24/7 call system if patients get unwell so that may well be her covered during the night but as you say - it all depends on how she feels. Some of the final Chemo used can be very strong so you need some clear direction from her team.
As her immune system starts to drop she will be wide open to infection and thats where she would have to be protected and going out about my not be advisable. I was in the SCT unit during all the 28/29 days of both my two Allo's and only was allowed out once my counts were at an acceptable level to go home but check this all with her team.
We were 8-9 hrs round trip away from home in Glasgow so my wife stayed most of the time in a family room on the ward. But she did go over to our daughters in Edinburgh a few times just to keep up with my washing as I had to have a clean set of clothes night and day every day.
Has she been told what Conditioning Chemo she will be having?
It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long.
Keep asking your questions.
Mike - Thehighlander
Some journeys take us far from home...... but some adventures lead us to our destiny - CS Lewis
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