Hi, my name is Maria and I’ve unfortunately relapsed with Acute myeloid leukaemia (AML) I’ve had a round of chemo and hoping to have a stem cell transplant in the next couple of months
I just wondered if any of you have got any positive good advice tips of long stay in a hospital room and how to get your head through it all I’m an outdoor person. I never sit still so this to me is yeah a big nemesis.
I know I can do it, but you guys also so lovely on here.
I just wondered if there’s anybody out there that could offer me some support thank you.
Maria
Dear @Maria_W
Thank you so much for posting and I am so glad you have found us as I am sure you will get lots of support here. I am so sorry to hear that you have relapsed, may I ask how you are feeling after the last chemotherapy? Just to note our Nurses are here if you should need to talk: Blood cancer information and support by phone and email | Blood Cancer UK
It terms of your stay in hospital, it is a long few weeks and when you feel like being active I would encourage you to do so. I suggest asking to see the physiotherapy team who can give you exercises to do in your room. Also, do take plenty of books and activities that can keep you occupied. If you can, do encourage friends and family to create a rota to call and video call so you have regular contact.
Please don’t hesitate to speak to your Clinical Nurse Specialist and team around any concerns.
So I had Acute myeloid leukaemia (AML) in 2023 and it was thought that I wouldn’t need a stem cell transplant.
Unfortunately, they found in my bone marrow biopsy molecular test in February that it had relapsed after doing Further tests.
I have had an intense Round of chemo, so I am neutropenic at the moment. Back In hospital at the moment with a fever and infection, unfortunately. They are hoping to do the transplant in the next six weeks.
I struggle really badly with nausea. Nothing seems to work. They’ve tried lots of different things even from palliative care ICU.
This is one of my main concerns when I come back in and it makes me really anxious and quite stressed which then doesn’t help my mental state which also adds to the sickness vicious circle
Thank you for your support. I’m sure I will be on here quite a lot
Maria
Hi @Maria_W a great big welcome to our forum.
I cannot beat @GemmaBloodCancerUK response.
I always keep talking to my medical team and tell them my thoughts and ask for their assistance including answers to your questions.
Comfortable clothing, very easy reading books/magazines, any hobbies you might have.
Your laptop, phone and chargers then you are never alone you are part of our forum family and zoom type meetings with family and friends.
Let us know how you are doing and be very kind to yourself.
Hi @Maria_W welcome & sorry you are going through this.
My husband had Acute myeloid leukaemia (AML) and needed a bone marrow transplant. He had this in June 2024 and is doing well. I’m obviously not the patient but just wanted to share something positive with you.
He is also very active and had to get to grips with slowing down. In the actual hospital, after the initial rest period he could have a bike in his room to try to keep moving. He also watched TV, talked to nurses, did a lot of resting and napping.
Things that made his stay easier:
easy to eat snack options including custard, jelly etc. the wheatabix drinks. The chemo he had before transplant is very strong & he did find he struggled with his mouth and throat for a week or so. he had a fridge in his room but perhaps this is a question you can ask of your medical team
Some extra long chargers so he could charge his phone comfortably from bed
Mentally, I think ask for help - talk to your medical team & family / friends. Can you distract yourself by watching a box set or following sport?
A year ago we were very close to him being admitted. Today he is enjoying life and regaining his strength. To look at him on the street, you’d have no idea.
Any questions that you have, I’d be happy to ask him or answer! Keep posting, it will be lovely to hear your progress and experiences.
I’m so sorry to learn of your diagnosis, my heart goes out to you and your family.
I’m Mike - and I was diagnosed with Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)). I got my diagnosis on the 10th of April this year, and I am now on active monitoring.
I remember an acronym S.A.R.A. standing for Shock Anger Rejection Acceptance, when something happens we didn’t expect or plan for, and I can assure you at times I feel all four or any combination you can imagine, and I imagine you have too.
If I can be of any support, simply as some one going through a not dissimilar situation, then I would be only too happy to stay in touch via this forum if you feel that it may help you.
One of the things I do is visit this forum, for support, and if I can support some one else in some way just by sending a few words of support on this forum - then even better.
Thank you so much for this
It’s so positive to hear.
I’m in hospital at the moment with a line infection for 7 day and feeling quite scared and overwhelmed with everything. You see so much when you are in hospital
I have a meeting with the Bone marrow transplant team on Tuesday and my husband is coming too. I know it’s going to be to the point.
Thank you
Hi @Maria_W I think it is natural to feel scared and overwhelmed, you have a lot going on.
Please do let us know how your meeting with the bone marrow transplant team goes on Tuesday.
Really look after yourself and take care
I had a Stem Cell Transplant in December due to another kind of rare blood cancer ,Mycosis Fungoides T Cell Lymphoma and I was in the hospital for about 4 weeks and from other people I’ve spoken to 4 to 6 weeks seems average.The core time you’ll probably be in isolation but before that I use to go for walks around the hospital and the very nice park over the road.Because you can’t venture out for much of the time they’ll probably give you an exercise bike which will help keep you’re legs in good working order.My main trouble was sleep as I had 3 infusions a day and sometimes the last infusion would only stop at about 01:00 then someone would come in to check your vitals about 05:45.Also if you don’t like it too warm it’s always about 23 C in the room and you can’t open the window at least not where I was.Other than that it was fine.
That sounds super tough. How are you feeling today?
The line infections are a real pain - my husband must have had at least 3 PICC lines and a Hickman. He was very close to having the Hickman line removed during transplant due to E Coli but they managed to salvage it…
The meeting is to the point so do prepare yourself - we brought a list of questions with us and some of the worries that we (particularly me) had. Our consultant was very helpful at explaining and putting our concerns to bed. I needed some time after the meeting to decompress & work through my thoughts so maybe plan to take it easy afterwards if you can?
