Andy Jackson
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13 Not Out

Andy Jackson
Posted by
12 May 2017

It's been a bumpy ride so far with many ups and downs along the way but I'm proud of what we've managed to acheive in that time even if some of the biggest challenges still lie ahead of us.

Today my bone marrow and I have made it to adoloescence! 13 years and counting since my bone marrow transplant for chronic myeloid leukaemia

It's been a bumpy ride so far with many ups and downs along the way but I'm proud of what we've managed to acheive in that time even if some of the biggest challenges still lie ahead of us.

Living life to the full

The ups have been plentiful and provided me with some glorious memories that will last until the day I die which I hope will still be many years away.

Highlights include sky diving and watching the British Lions in New Zealand, appearing on (and winning) a TV game show, running from John O'Groats to Lands End in a Mr Happy suit, seeing the sunrise over Angkor Wat and, most importantly, meeting and marrying my beautiful wife Lauren.

I've been truly blessed and I cannot thank my donor or Jane Apperley and the incredible treatment team at the Hammersmith Hospital who have looked after me from day one for giving me this second chance at life that I've tried to grasp with both hands. 

However the downs have also been tough and hard to take ... 

Recovering from transplant

In the immediate months after treatment like many I really struggled to re-adjust to normal life. I really hadn't appreciated just how difficult it would be to get back where I was before transplant and it wasn't until almost 18 months post transplant that I realised that I would never get back to where I was before. You can't just wipe out going through things like total body radiotherapy. Treatment and blood cancer change you forever.

Two weeks prior to going in to have my transplant I ran my first (and second best) ever London Marathon and felt fitter than I'd ever felt before. In the weeks and months after treatment I could barely walk up the stairs and had dropped to less than 8 stone.

Looking back I have absolutely no idea how I managed to make it to university within 3 months of my transplant and through freshers' week although in hindsight this was a really bad idea as I didn't give myself time to grieve my mum's passing or come to terms with my new normal in any way.

Unsurprisingly I picked up a number of infections and found it hard to keep up with my new university mates especially when it came to playing football or going out for drinks.

Depression

Pride stopped me from realising my limitations and I slipped in to a really negative place where I developed a really unhealthy obsession with trying to do absolutely everything to make the most out of my second chance at life.

When I inevitably dropped juggling all the balls I would spiral into a fit of depression which wasn't helped by the amount of alchohol I was consuming. I would then beat myself up for 'failing' then try to be perfect all over again only for the cycle to start over. 

The worst thing is that I suffered in silence. I hated opening up to others about my feelings as I didn't want to appear weak or burden people with my problems. The only person that I could open up to was my mum and she was no longer there. I was lost. 

Seeking help & enjoying life

It wasn't until I went to talk to a lovely man called Peter at CRUSE counselling that things began to get better. I don't think there was any particular epiphany moment or anything like that which made me decide to go and I can't even remember how it came about but I do remember going to see him (it was another lecture as far as my uni house mates were aware) and he really helped me come to terms with what I was feeling and what I'd been through.

Letting go of a lot of the things that I'd bottled up inside changed everything and I then entered a period from the final year of uni up until 2014 which I will look back on as being one of the best of my life.

I was at my strongest and felt the most free as I no longer had the shackles of leukaemia, was on no medicaton with the exception of thyroxine for an underactive thyroid and bar scraping together enough money to pay rent I had almost zero responsibilities. I could enjoy living life and I threw myself into running which was then and always will be my release from the world.

New challenges & long-term side-effects

However everything changed when I was diagnosed with an extremely rare lung condition (there are currently less than 100 officially diagnosed cases to date) called Pleuroparenchymal fibroelastosis, a type of pulmonary fibrosis. Doctors believe it was brought on as a result of my bone marrow transplant and the effects have been devastating as I've lost almost 40% of my lung capacity.

The drop in my lung capacity caused by the damage my immune system was doing to my lungs didn't happen overnight and had been going on for some time but the decline was marked and I went from being able to run more than a marathon a day 6 days a week running from John O'Groats to Land's End to struggling to run 5k. That's a scary turnaround and something that I've really struggled to come to terms with. Sport and running in particlar are big parts of my life and I feel like they'd been taken away from me.

The lung condition seems to have also ushered in some other unwanted side-effects and in many ways I feel like the transplant has begun to catch up with me. I get tired a lot more easily, I pick up more and more infections due to the immuno-suppressants I'm on to try and curb the attacks my own body is making on my lungs and I can't remember the last time that I didn't have a cough.

Mixed up emotions

An uncertain future lies ahead as the treatment that I'm on for my lung condition is only holding the decline at bay while there are no guarantees that it will continue to do so indefinitely. I'm stuck in limbo and fluctuate between being scared for the future and angry at the hands I keep being played.

I had to do a lot of growing up very quickly when I had my leukaemia which in some ways was good but in other ways was bad. I also had to prepare myself for the fact that in all likelihood I wasn't going to be able to have children without the help of IVF and then I had my lung condition thrown in which really was a hammer blow.  

The only thing I can do is keep fighting but fighting is exhausting and some times you just want a break. Sadly I don't think that will ever come for me and I've found like many patients that with time all these issues have made me become more distant and less care free. This has undoubtedly affected my relationships with friends and family who through no fault of their own don't understand what I'm feeling or where I'm coming from.    

Now I tend to go in cycles of feeling down about things just like I did in the first year and a half after transplant. A return to a counsellor or a psychologist is most definitely something that I think would be good for me. However what I ultimately always keep coming back to every time I feel sorry for myself is just how lucky I am have had a second shot at life to do things like Mr Happy Runs Britain which bar getting married remains the single proudest achievement of my life:

I've had a pretty incredible 13 years that had I been diagnosed 30 years ago I would never have had and whilst the terrible teens lie ahead for me and my bone marrow I know I've got the amazing support of so many people behind me and I haven't come this far to throw in the towel!

Andy was sharing his experiences as part of #MentalHealthAwarenessWeek. If you've been affected by blood cancer and want to talk to someone about your experiences do give our patient experiences team a call on 0808 2080 888.

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16.05.2017