The Work Goes On

I was lucky enough to be invited along to the Cancer Research UK laboratories in Liverpool recently and I can’t even begin to describe how much of an impact the visit had on me but this blog is my attempt to put those feelings into words.

My son was diagnosed with a rare form of leukaemia when he was twenty one months old and during his treatment, I felt powerless to help him.  For a period of about eighteen months while his cancer remained indolent all I could do was research my son’s disease as much as I could so that I was best placed to be his advocate.  That was over seven years ago and I’ve forgotten much of what I learned but now all of those memories have come flooding back.

An oncologist once told the parents of a little boy that the treatment they were about to embark upon would one day be considered barbaric.  Their child had the same type of leukaemia as my son and eventually Nathan faced an identical course of treatment, only his consultant referred to it as ‘heroic measures.’  It involved pumping three different types of chemo into his small body over a matter of days to stop his bone marrow from producing cancerous blood cells, quickly followed by a bone marrow transplant.  And when my son was at his lowest, it also involved withdrawing anti-rejection drugs so the new cells would fight Nathan’s own cells and kill off any residual cancer.  The life-saving treatment was so intensive that it was also life-threatening.  It was a lot to ask of a three year old and in Nathan’s case, too much and he died a month after the transplant.

Talking to the staff at the labs, I realised just how much there is still to do, not only in the search for a cure but in the treatment protocols that patients of all ages must endure if they are to stand any chance of getting that all important ‘all clear.’   Yes, cancer treatment has come on in leaps and bounds but with more people developing cancer than ever, now is not the time to take our eye off the ball.

CRUK

Cancer Research Lab -Liverpool

Since I lost my dad to cancer some twenty years ago, I’ve always supported cancer charities. I’ve completed nine Race for Life events with my daughter for Cancer Research UK and I ran the London Marathon for the Children with Cancer charity.  But until now, I never stopped to think how the funds raised might be used.   Other than coming across the occasional awareness campaign or reports on the latest statistics or break-throughs, the work undertaken by cancer research charities isn’t particularly visible or obvious.  In the labs, I was able to see some of that research first hand. There were stacks of Petri dishes containing live tumour cells and experiments to see what effect different drugs had on the cancer, the aim being that when those drugs are used, patients are given enough to do the most damage to the faulty cells and the least damage to the healthy ones.  I saw that kind of balancing act when Nathan was being treated, treatment which was based on the best knowledge at the time but which caused horrendous side-effects that are simply too painful to describe.  I have to believe that one day there will be a better way.

What heartened me most about my visit to the Cancer Research UK labs was hearing how much collaboration goes on behind the scenes.  It’s not just about individual organisations working to serve their own interests but a joint approach with other cancer charities, the pharmaceutical companies, the universities and the doctors, all working together for one common cause – to beat a disease that is likely touch everybody’s life in one way or another.

Cancer is on the increase and where I live in Liverpool, in the North West, statistically I’m more at risk.  We all know how to reduce those risks (quit smoking, drink less, eat healthily, exercise, avoid sunbeds and sunburn and generally be aware of the subtle changes in our bodies to spot the early signs) but we can’t eliminate those risks completely – if a three year old child can get cancer then none of us are immune.

What happened to my family was the single most traumatic experience of my life and it continues to affect me.  I became a writer to make sense of what happened and writing my second book Another Way to Fall placed me back amongst the kind of devastation that cancer can bring.  The novel is brimming with strong and inspirational characters who would much prefer to lead ordinary lives.  The same was true of my family.  I didn’t want my life to change, I didn’t want my son to have to be that strong.  I would rather Nathan’s treatment had been a little less barbaric and that he hadn’t been called upon to be so heroic.  The truth is, I would rather he was still here and while I have no choice but to accept that can’t happen, I can still pray that the next child won’t have to be so heroic.  It’s a hope, and one that’s kept alive by the amazing work of the scientists, doctors and fundraisers that I’m dedicating this blog to.

Thank you to Emma Squibb and Jamie Wilson for giving me such a thought-provoking tour.

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6 thoughts on “The Work Goes On

  1. Dear Amanda,
    You’re so positive and full of hope. It takes a certain kind of strength to live each day in a positive way when you’ve lost someone you love so much. You’re an inspiration. Indeed what would we do without the amazing scientists, doctors, nurses and fundraisers. Also authors like yourself who draw the reader in, in such a moving way that you leave an imprint on them. It’s awful sad that you’ve suffered such grievous sorrow in losing your dad and son. Thinking of you and your family, with much love and hugs, Carla

    • Thank you Carla, it’s not by choice that I find myself in position to write from experience but I do try to make sure that Nathan continues to have a positive influence on my life and those who read about him x

  2. Thanks Amanda, for this fabulous review of your visit. We think it’s important that people who have helped to fund life saving research should be able to come and talk to the scientists who are doing that research. Jamie and I enjoyed meeting you very much and I hope we will see you again soon.
    Emma

  3. Thanks Mandy – youve saved me a job ! Mum has supported Cancer Research for many years and even more so since Dad died from prostate cancer. She asked me to write a short piece about what we saw at the lab to share with the other volunteers and supporters and you’ve summed it up perfectly so I shall forwards your message on to her. I too had wondered what happened to our fund-raising money having completed several Race for Lifes and Bikeathons in memory of Nathan. It was inspiring to see the dedication of the lab staff and also interesting to see how expensive all the research is – a microscope costs £35K. I was also heartened to see the partnership between so many organisations including the university, hospital, Cancer Research,Roy Castle Foundation and Marie Curie to name just a few.

    So I guess the message is to carry on with fundraising knowing that the money is put to good use and also to encourage people to seek medical advice if they do have any concerns over their own health.

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