Post stem cell transplant and feeling lost

Hi again Peony68 and welcome across to this corner of the community.

As you know I had 2 Allo (donor) SCTs the first in June 2014 with the second in Oct 2015….. and have now been officially in remission for over 7 years.

Honestly the first 6 months post SCT is a challenge, the SCT process is so challenging and it take the body some time for both the body and mind to recover.

You are only a few weeks out from the process so you just have not had time to process everything.

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

My Consultant told me that going through treatments like these was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.

Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality

Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.….. as you know at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks…..

My consultant also gave me this basic scale for classifying where I was on the recover journey.

50% = when in the hospital going through the transplant process.

60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.

70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.

80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.

90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.

100% = No physical after effects and able to do multiple tasks including being back to work.

She also said on average the recovery is about 6 months with your recovery improving about 10% per month post SCT

Hi Peony,

Sorry you are struggling at the moment. It is very early days for you post transplant and your feelings are perfectly understandable. At the point of diagnosis the medical machine quickly sweeps in and we patients are caught up in a tsunami of procedures and treatments with no time to come up for air. It's only when it slows down and we are in recovery that we pause and think what on earth just happened and what do I do now?? This is where some psychological support may be helpful. Does your transplant team include a psychologist? Mine did and I found these sessions so helpful. It may be worth asking about.

The fear of relapse is a constant concern but over time it recedes a bit more into the background as you pick up the threads of your life again. I am almost 3 years post transplant and yes I have had many challenges regarding my health but I am living a full and enjoyable life. Be kind to yourself try to practice some self compassion and remember recovery post transplant is a marathon not a sprint.:)

Dear Mike

Sorry for not replying sooner. I was unwell with an infection but am feeling better now.

i have started reading the article from Dr Harvey and can already resonate with what he was saying in it. I do have support from my psychologist and she is helping me to work through the unknowns which are always there despite the leukaemia. I have had some time to think and reflect whilst I have been unwell and am working on choosing to thrive than just survive. 
Thank you 

Hi Paperplace

Sorry for not responding sooner. I have been unwell but am much better now. I did read your reply before I was admitted and you are right. The medical team took over and it’s only now that I have had the time or even allowed myself to process what happened. I do have support from my psychologist and I have had discussions about my fear of relapse. I realised that I have been in a survival mode which I had to do but I don’t want to keep staying in that mode. I want to thrive! I am so pleased to hear that you are in remission and the fears of relapse does lessen. 
I will be getting my chimerism blood test next week and I am hoping that the results are positive. 
Thank you 

Sorry to hear about the infection….. my infections also kicked in a number of months after my SCT….. our baby immune system is still growing so like babies we can catch lots of bugs.

Good that you are getting help to unpack the invisible ruck-sack put on our backs at the point we were diagnosed.

We then walk through our journey including our treatments, clinics, blood tests, scans, side effects……. and unknowingly, we continually throw stuff into the ruck-sack…… and the stuff builds up. It’s only when we finished our treatment (rang the bell) and look to try and ‘live’ life we realise that it’s not that straight forward.

This is due to the weight of the ‘stuff’ we have collected in the ruck-sack pulling us down…. stuff like pent-up anxiety and stress, the ‘what if’s’, the difficulty in seeing a way forward with life, the disappointments around how some of our family and friends supported us, the silly things people said during and after treatment….. the list goes on.

There comes a time when we hit ‘the wall’ and this is the point when this ruck-sack needs to be taken off out backs and over time cleaned out. It’s not an instant fix but a process…. but the healing process can only start when we are willing to do it and to achieve this we often need help so these are some links that you may want to follow up and see where you can find this help.

Our local Maggie's Centre was my go-to for help especially their Where Now? Course and One on One support.

It’s important to aim to define how you live…… not let the journey define us ((hugs))