My husband is going into Freeman hospital, Newcastle this Thursday 22nd Sept for a weeks chemo prior to stem cell transplant on 29th! When he had FLAG Ida he ended up in critical care unit for 2 weeks in May, I'm terrified this will happen again, he is in remission at the moment from AML but we have been told a transplant is the best thing for him!!! I suppose it's the fear of the Unknown!!
I don't know about FLAG Ida and haven't been in critical care, but I have had two transplants and know quite a lot about anxiety. I don't think there is anything I can say to magically take it away, but please rest assured that what you are feeling is 100% normal and there are loads of examples of people on this site who have been through what you are going through now and come out the other side. Is there anything specifically that is causing the anxiety or is it more generalised in nature? I'd be very happy to answer any questions about the transplant process itself if it is helpful? Everyone's experiences are different but I have always found this forum to be a great support in terms of sharing experiences.
Best wishes to you and your husband, Greg
The best advice I can give you is to focus on a positive outcome and coming out the other side as unscathed as you can. I believe a positive attitude contributes to the success as your body is supported by your mind if you believe you will get through it. If you go into this expecting the worst I don't think it's as helpful.
You also have the support of us all here as patients past and present who have gone through it or are in the process the same as you are. Whilst we can't give medical advice we can help by sharing our experiences and assure you that what your husband is going through is normal and to be expected, and that most of us will have experienced the same. We are supported by the Anthony Nolan team including Hayley, the clinical nurse specialist who can fill in the gaps with the medical advice we can't give.
In the meantime all the best to you both and I wish you all the best for your husband's transplant.
All the best,
My name is Hayley and I am the nurse specialist in the patient experience team. Thanks for posting on the forum, as you already have seen it is a great way to get support and advice from those that have been through similar experiences.Both Steve and Greg have given you good advice and I fully support what they have said.
FLAG/IDA is a strong chemotherapy regimen and it will leave patients neutropenic for long periods of time and at risk of infections. Unfortunately this is what your husband experienced and a bad experience will always play on your mind, however this doesn't mean it will happen again. Infection is one of the biggest risks of treatment and the transplant team looking after your husband will be very experienced at looking for signs of infection and will constantly be monitoring for it. Treatment is initiated early if they suspect an infection plus he will be on medications that will be protecting him from any possible infections.
Anxiety about what might happen after a transplant is very normal, there is often a big build up and in my experience patients and their families feel better once they are admitted and start treatment. Try not to think too far ahead and just focus on one stage at a time, i.e. the admission for transplant and then once he is discharged the early phase of recovery. Thinking about what might happen can be overwhelming, its good to prepare but just take your time and stay positive. You have both been through a tough situation with his admission to ITU so you know you are both strong and you must use this to know you can get through the transplant.
A good guide to have is The Seven Steps which gives excellent information on preparing for transplant and you can get this from Bloodwise https://bloodwise.org.uk/document/seven-steps-blood-and-bone-marrow-transplantation. For post transplant recovery The Next Seven Steps is available from Anthony Nolan https://www.anthonynolan.org/patients-and-families/resources-and-information/download-or-order-information and is another excellent resource to have in guiding you through the stages of recovery. Other Anthony Nolan information that you might find useful is the little guide to transplant and life after transplant range which gives advice on isolation, emotional wellbeing, managing your recovery and exercise.
Everything you feel right now is normal, every patient and family member on this forum will have experienced the same at some point. They are either getting through it right now or are beginning to get their life back to normal or have now come out the other side and can use the experience to help you. Take the positives from this and please keep us informed of your husbands progress.