Steve J
Posted by
Steve J

Joining a select little club

Steve J
Posted by
Steve J
22 Apr 2016

Six months Post Transplant

I`ve never found the need to write a blog before but when life throws a curve ball at you it only feels right to make contact with other members of this little club.

I`m six months post transplant having first been diagnosed with ALL in November `14 and the journey since has been a bit of a blur. I had intended to record my thoughts and impressions whilst undergoing treatment but never quite found the impetus. I guess I was more concerned with just "getting on with it" and accepting whatever was thrown at me. Now I`ve come through the transplant stage and everything seems "okay" I find it strange to have to live with the occassional intrusive thought of relapse - I guess this will be my new reality.          

 

Comments

25.04.2016

Hi Steve,

Thanks so much for joining the community and sharing your experiences so openly. I had CML as opposed to ALL but also had a transplant. That was 12 years ago now and if I'm honest I still have a slight fear in the back of my mind that one day the blood cancer may return.

The first couple of years are tough after transplant and I actually found the time immediately after transplant almost more tough than the transplant process itself as with a compromised immune system seemed to pick up lots of unwanted coughs, colds and infections. However I battled through and for all the ups and downs I did slowly pick up and I found that setting small goals to look forward to and strive for as well as taking every day as it comes, corny as that is, really helped.

I remember the fear of relapse was also much greater then than it is now although I'd be lying if I said I still didn't think about it now and again. I think the issue for me was that I found it very difficult to know when and when not to bother my consultant when I was getting ill and understandably panicky about whether it was a first sign that the CML was returning. I think a lot of patients feel like this and find being 'released' back in to normal life again different.

I was worried that I would be wasting their time by hassling them unnecessarily and appearing to be a hypochondriac. Don't be. You're not wasting their time and they fully expect patients to be in touch with any concerns that they might be have. Get a direct line and email address for your clincial nurse specialist as they are fantastic and can help you put your mind at ease.

The other thing I'd really recommend is the Anthony Nolan seven steps booklet for patients after transplant. Fantastic resource which I wish I'd had access to: https://bloodwise.org.uk/sites/default/files/documents/anthony_nolan_the...

I hope this is helpful and puts your mind at ease to some extent. I guess the fear of relapse never really leaves you but it does get better over time.

Best of luck with your continued recovery and remember that our Patient Experiences team are always here if you ever need any additional support or information on 0808 2080 888 or via email at support@bloodwise.org.uk

26.04.2016

Hi Steve, I was diagnosed with ALL at the age of 28 in January 2012, next week is the four year anniversary of my stem cell transplant! I know exactly how you are feeling at the moment. You think that the thoughts of replase are going to sit at the front of your mind forever and not let you move forward. It wont stay like that, well it didnt for me. you go back to worrying about the small things in life that dont really have any bearing on life in the grand scheme of things! Im taking my little girl to florida next week for the holiday of a lifetime that fours years ago was something that I thought would never be a reality. Concentrate on making happy memories and being happy. life is precious. yeah every now and again the thoughts of relapse go through my head but I just think of my next adventure and they go! Hope my ramblings help a little!

Ade

Steve J
05.05.2016

Hi Ade, thanks very much for your advice on dealing with thoughts of relapse. I`ve just visited hospital today for a line flush and blood test - quite shocked at how low my neutrophils are compared to two weeks ago, mind you I`ve just fought off a 24 hr virus so I guess that might explain the dip. Additionally I`ve just had the first course of "childhood" innoculations today. A bit of Florida sunshine sounds great - I hope you have a fantastic time. As the weather is so good at the moment I`m planning to go fishing on Monday, just to spend some time surrounded by nature - just got to remember to wear latex gloves when handling the fish (health and safety gone mad ?) Anyway Ade I very much appreciate your contact and words of experience. Cheers, Steve.