Emma Tilley
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422 days’ Post-transplant - A Life Worth Living

Emma Tilley
Posted by
11 Oct 2016

Over a year on from my treatment for blood cancer and I'm thankful for everyday I live.

Key milestones over the last 2 years:

10/10/14 – CML first diagnosed in the chronic phase

12/04/15 – Blast transformation behaving as AML requiring intensive care and emergency chemotherapy

04/08/15 – Unrelated allogeneic double cord stem cell transplant

16/12/15 – Relapse with blasts visible at 15% in the marrow and given weeks or months

18/07/16 – Extremely sensitive PCR on marrow cells comes back as negative for the first time since diagnosis

To say that the last two years since diagnosis has been eventful is a bit of an understatement. I’m almost scared to explain to people that at the minute I’m doing extremely well in case I jinx it.  After going through a stem cells transplant (which involved killing off my bone marrow and growing it back) and then being told your cancer is so aggressive it has manged to survive the most intense treatment the NHS can provide. To then being put on a tiny tablet and being told ‘this is your last hope’. Despite my team of consultants not having much faith in the tablet, it seems to have beaten all odds and managed to do what no other treatment has done so far.

I sit in my new university accommodation about to start my final year dissertation and I find myself questioning…

How am I still here?

Just under a year ago I was unable to perform the simplest of tasks such as cooking, cleaning and even found showering exhausting which resulted in an hour nap afterwards. Days’ seemed to have no purpose as I mainly just lay on the sofa watching some dreadful daytime television. I had no interest in eating as my body rejected everything I put in it and dropped to an unrecognisable 7.5 stone (looking at me now I know that’s hard to believe). I was pre warned that this was the consequence for most patients receiving my kind of treatment but I couldn’t help wonder if the extreme tiredness, sickness and poor appetite would ever end.

A year on and I’m back. Yes, I’m ridiculously unfit and my crappy immune system likes to make sure I have a cold and a tonsil infection at least once a month but life is worth living again and it has been for some time. In the summer I was able to travel abroad for the first time in 2 years; I’m playing tennis again; eating like a horse; returned to university to finish my degree and feel as if my freedom has finally returned.

Your health is your freedom.

I recall lying in my isolation unit 6 weeks into my transplant and thinking how your health is the most important possession you can own. I remember feeling trapped and how much I had taken for granted up till that moment. I couldn’t even get out of bed and go for a walk as I was attached to multiple drivers infusing a cocktail of anti-sickness/antiviral/ fluids/ antirejection/ platelets (the list could go on). Not that I could walk much anyway as a trip to the bathroom one night resulted in a crash team of about 7 staff rushing to my room after I decided to pass out on the toilet.

Thinking back to those hard days from the position I’m in now is sort of mind boggling and at times and I find myself questioning was it all real? But as my hair grows back, my stamina increases and life slowly gets back to normal I cannot help but think about the people I met throughout my journey who didn’t make it. I remember reading that a fellow blogger that I had seen thanks to the Bloodwise website, was just in the room opposite me throughout her transplant who seemed to be taking the treatment a lot better than what I did and was home within 3 weeks of her transplant. Me on the other hand, had to stay in for a total of 7 weeks as my blood counts took much longer to recover. A few months later I read another blog post from the lady saying the cancer had returned and later that week passed away after seeing a post on her Facebook from her family. After reading this it really hit home how lucky I was and couldn’t quite believe it as I had seen her in clinic just weeks before.

I realise my situation is still very precarious and like all cancers you can never really label yourself as ‘cured’ and of course I live with day to day anxiety that one day it might return. Being so close to death has made me realise the importance of living for the moment and not to stress about such futile everyday problems.

Anyone going or about to go through treatment for blood cancer, the only advice I can give to you is to have hope and patience. Think about all the things you want to do when you are well again and focus on what makes you happy. Take baby steps and remember some days will be worse than others and try not to think a bad day as taking a step back. And lastly listen to your body and remember one-day life will be worth living again.

 

Emma Tilley

 

Comments

Eleanor Baggley
12.10.2016

Hi Emma, it's lovely to hear from you. Thank you so much for sharing this fantastic, honest, and inspiring blog post. You've been through so much in the last two years, but it sounds like you're moving on to do great things. Please know that we're here to support you still and would always be happy to talk through any worries you have as you move further away from treatment. I wish you all the best with your studies and your recovery. Very best wishes, Eleanor