My friend found out just over 12 months ago that she has an incurable and rare form of Leukaemia but she is a fighter. Cancer drugs are expensive, the NHS takes decisions on how much a life is worth. What life saving drugs would you leave behind a locked door and then watch some one die? How much mental stress would you put on someone trying to hang onto recovery by telling them that other drugs are too expensive for them?
My friend can explain this with much better clarity than I ever could, let her tell you about fighting cancer and what being told how much your life is valued at feels.
An open letter from MD:
A life worth living, a life worth saving?
I remember how I felt just before the day that changed my life forever. It was a fabulous and unusually sunny Bank Holiday Monday in April 2015. I sat in my parents’ garden and told my Dad how amazing I was feeling. My eldest daughter was about to get married in May, and I had been working out at the gym and watching my diet so I could look as good as possible. I had just been given ‘Member of the Month’ at the gym for my hard work and commitment in March. I was buzzing from my achievement ! I was at my fittest for years!
So I guess something had to knock me off my pedal stall, right? That week I had nipped to the doctors for a quick chat about some night flushes I had been having. It was obviously the menopause, I thought, but best to get it checked out. The doctor was initially quite dismissive, talking about my ‘time of life’ but I insisted on some tests, mostly because I have an under-active thyroid that I thought ought to be rechecked.
A few days later I was sat in a meeting at work when my secretary came to say that there was an urgent phone call from my GP. I took the call in the open plan office. My GP told me that she had some bad news (oh bum, that’ll by my thyroxin levels, again, I thought) and then my world plummeted into a place I wouldn't want to take my very worst enemy. Words were spoken that I can’t remember. All I remember saying is ‘Are you telling me I have leukaemia?’ My secretary (or in this context, good friend), drove me the 55 miles home. Who cared about my car being at work?
The first few hours, days and weeks following the news were the worst. You live in a sort of no man’s land, I remember asking an ‘on-call’ GP at the surgery who called me what support they give to people whilst the diagnosis is being confirmed, and whilst they are staging the cancer, whilst you find out your fate. He went silent. He was clearly challenged by such a question. ‘Um, well I suppose it’s a time for family and friends’, he eventually said. Clearly the national health is not responsible for your emotional well-being, particularly once they have handed you off to a specialist. My GP was much more helpful and understanding, but she offered me sleeping pills and anti-depressants. I didn't touch them.
Instead I put it out there. I had already told very close friends and family but then I told people on Facebook and people at work. Just writing it down or saying it out loud helped. I cried and cried as I wrote the words, but it helped my acceptance. It made it real. And then came the offers of help and support. I took them all up– from the person who held my hand that very first day whilst my secretary got her car, to ginger tea from someone I hardly know to help the sickness for the hydroxycarbomide, to a hamper from a dear friend, to help from my parents, to lists of questions to ask from my sister, to accepting my friend taking my daughter out so I could cry, and having her again so my husband and I could take some adult time away, to letting dear friends in the door who would simply listen to me, to free reiki, to a daily 5.15 ‘Pointless’ visit with my mother in law with dips and a glass of wine! I took anything I could to make me stronger. I didn’t shut anyone out – I let them all in to fight with me.
I listened. I listened to my husband tell me I was going to be OK on a daily basis and I looked him in the eye and believed him. I listened to my sister, who had recently been through a terrible experience herself who told me to try as hard as possible to keep things ‘normal’, so still enter the Fantasy Football league, even though it seems meaningless right now! I listened when a guy at work said ‘come on, Marie, this is just another risk. You love risk! We all live with risk every day’. I still counsel myself
with that now, one year on. It’s just another risk. Why worry about what might not happen? What a waste of energy! Enjoy now. Be in the now.
I wrote. I wrote on Facebook, even if no one was reading it. I simply used it for my own purposes and if someone responded and gave me good energy then even better. I wrote to my older daughters and my friends via Whatsapp. I wrote a diary. I wrote down everything I felt. I haven’t read that diary as I write this because it’s too painful, but it really helped at the time!
I talked. To anyone who would listen. I remember one sunny day with a colleague from work, sitting on a step with the sun on my face, simply telling her I didn't want to die. She listened and showed me deep compassion.
I also learnt as much as I could, so I could gain some semblance of control. After my second eldest daughter had kindly found it and vetted it for me (to make sure it wouldn't scare me too much), I joined the closed Facebook group so I could talk about how scared I was initially and then, more latterly so I could help others, because that helped me. I asked every question I could think of and then wrote down the answers so I could remember them. I read every piece of official literature I could find. I went to the patient seminar groups at Hammersmith. I got to know other patients, who seemed pretty alive to me. I began to have hope. There was hope! I became positive. I started to believe;
And then there was my job. I told my boss immediately I could and he told me I could do whatever I wanted – stop working, work a bit, work at home, work normally – whatever I wanted. This was my salvation. I have a demanding senior job in Education, but my work became my therapy. When I chose to be there I could escape, give my brain a break from the terror and the uncertainty and focus on achieving great outcomes for children. What’s not to love?
And so I started to adapt. Living with cancer. That’s what I do. I live with cancer. I will probably always live with cancer. It’s had to become my friend. So I have looked for all the positives that this opportunity of having cancer has given me. I've realised who my friends are. I have realised how much I love my husband. I have realised how lucky I am to have such a strong and supportive family. I have realised I am lucky to have my job, and my boss. I have made some great new friends, had the chance to help other people being diagnosed, helped with the Leukaemia Care patient booklets. I have realised that some people don’t have the same personality as me and will respond differently, and that’s OK. I have become more tolerant of others. I love and appreciate the sun, the birds and the smells outside. I smile a lot. My husband and son-in-law raised over £4000 for Leukaemia Care! My husband went and ran the London Marathon! I get free prescriptions! I get to park free at Oncology! Look what has happened since that day in the garden! Look how enriched I am. Aren't I lucky?
The drugs are quite hard though, I have to be honest. I am on Nilotinib twice a day. Me and my youngest daughter decided to call it ‘Niall’ after him in One Direction as Niall is her favourite. Niall is amazing but such a pain because you have to fast two hours before and one hour after taking it, twice a day, every day, probably for the rest of your life! You lose the ability to be spontaneous, and you have to plan all the time. I am good at planning (it’s critical for my job), but how some people manage I just don’t know. If only medical science could sort that bit out I'm sure people would be more compliant, and more successful on it as a result.
The side effects are not great. Initially I got an immensely painful scalp, hip pain, extreme fatigue and more hot sweats. It’s pants. I remember shouting ‘I can’t take these ******** drugs any more!’ at my husband and him saying ‘well then fine. Stop then!’ It’s his particular way of telling me to suck it up. And I did. I don’t need much challenge when it comes to wanting to win. Now I get stupid stripes over my face and I just simply don’t have the energy levels I used to have. I get very tired quite easily and a bit tetchy. Sorry everyone.
Niall has been amazing for me. In 9 months I had achieved 0.001 PCR – almost undetectable. There is no reason why it should stop working – as I have said, it is just another risk. However those of us that manage risk will know that the best way to deal with that risk, to comfortably live with it, is to mitigate it. In the real world we call that insurance. if I get a mutation, or Niall stops working for some other reason, I currently have other options. But that may be changing because of proposed changes to the Cancer Drugs Fund that makes these drugs available.
These proposed changes to the Cancer Drugs Fund worry me. The fact that I might have second line treatment options taken away worries me. It brings back the fear that I have learnt to live with. Are we really saying that this country might remove my insurance choices? Are we really only saying that in this country, whereas if I lived somewhere else in the UK it would be different? Are we really saying that I might not be worth another option? That my life might not be cost effective enough to invest in? Professionals have spent time convincing me that I am not to blame, that I did not cause this to myself, that it is random…and yet now other professionals are saying that there may be drugs that could save my life that do not merit the investment?!
How do we square that as human beings? How do we balance it with investment in those that actively choose to lead a life-style that damages their health? How do I keep feeling positive and smiling in this new context? How will those who are naturally more anxious than me possibly cope? Is there really a possibility that England might cancel our insurance? I understand that we have limited resources. I understand that we must use them efficiently and where they have most impact, but we must allow those who have these rarer forms of cancer to have the chance to live and for the medical profession to have the ability to learn about how best we can beat this horrendous wolf from our door in the cheapest, most effective way possible.
We can only help the profession do that if you let us try other drugs IF NEEDS BE.
When I told my 8 year old daughter that I had cancer she said ‘Are you going to die, Mummy?’ I said the most truthful thing I could, ‘Not if I can help it!’
Please help me to fulfil that promise. Please don’t take away our insurance.
MD
May 2016
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But the July 10k was never going to be as much fun. I'd entered on my own, so no chums to spur me on. I haven't run a 10k for at least 9 months prior and only walked it a handful of times.
