I was diagnosed with a rare form of CLL just over a year ago aged 57 and have been under treatment that have brought it back under control. However the only option for me is for a non related stem cell transplant. Fortunately there are matches on the register and I am under the care of the Christie who have been exceptional and my stem cell journey is likely start in the Autumn. It is a step into the unknown and I have read and digested the 7 steps and am getting my mind into a positive state so I can meet this challenge.
Uncertainty is my new normal and my condition has forced me to reframe my life and focus on what is important given the life limiting condition that I have.
I am physically active and hope that this will help me through the challenges ahead. I am interested to hear from anyone who has been through this journey as it would help prepare my mindset.
The Anthony Nolan Trust have been very helpful and we have a team entered for the Hairy Haggis Edinburgh marathon at the end of this month and have raised funds to help their research.
Thank you for your time in reading this, any pearls of wisdom will be gratefully received and I know everyone’s journey will be different but I am sure I can gain strength from anyone who has been through this challenging journey.
Thanks for sharing what you’re going through. I’m so pleased to hear you’ve got a match and that you’re getting good support in preparing for the transplant. It sounds like you’re approaching this in a good mindset.
Reading information like the 7 steps is great to give you an idea of what to expect. I’ve looked after lots of people having a stem cell transplant so whilst I can’t give you advice from the perspective of someone whose been through it, hopefully my insight will be of some use.
A lot of people benefit from having some homely touches in their room- your own pillow/bedding etc. Sometimes concentrating can be difficult to having a few different things to occupy you might be helpful- audio books/podcasts as well as books/magazines. If you have an ipad or laptop that you can download some TV programmes or films on to that can be helpful- or check what the hospital wifi is like ahead of admission so you know how easy it is to stream programmes.
Trying to keep in a routine as much as possible, whilst in hospital (as you’re able to) is good- getting up/changing clothing/gentle exercise daily will all help with recovery. But equally not putting huge amounts of pressure on yourself, it is a fatiguing treatment so don’t push yourself to do too much, set small goals and build on them slowly.
Another key piece of advice is lean on friends and family for support, people will want to help- whether its lifts into hospital, after the transplant (you may need to go in to the hospital 2-3 times a week for a few weeks) getting you shopping or doing a bit of house/garden maintenance while you aren’t able to.
We have lots of booklets and information on the website that you may find useful in preparing and going through your transplant, do have a look and if you have any further questions pop them here or get in touch on our enquiry line/email.
Wishing you a speedy recovery from the transplant.
Many thanks for reading my post and responding it is much appreciated.
I am daunted by the process ahead but am trying to put a positive spin on it to get me through. The waiting and anticipation of the unknown is a bit all consuming at times but I am making the most of life at the moment whilst I feel relatively normal.
I am keeping fit and building up my strength for the journey ahead any advice on prehab would be appreciated.
I’m sure the whole process is feeling very daunting, understandably.
Great that you’re aiming to stay active and look after yourself as best you can in the run up to the transplant. I’ve popped the link to our pre-hab info below for you to have a read through. Ultimately, you’re looking to optimise your wellbeing ahead of transplant to aid a better recovery- staying active and doing some exercises/activities that you can continue with in hospital are great, exploring some breathing exercises to help manage anxiety may also be useful. Eating well is something else you can do to optimise your health ahead of your admission!
Read the info and speak to your clinical team at the Christie or come back to us with questions if you have any.
Many thanks Rachel, very helpful and I will discuss with the Christie in my next appointment and also with my local hospital in relation to any resources they have available for prehab.