Cancer – the price of hope

Background
A couple months ago I wrote a post about the cost of life extending cancer treatments, Cancer – the cost of no cure. It offered my perspective on potentially life extending drugs for people with cancer, particularly reflecting on my personal experience as my Dad is terminally ill with secondary cancer that started out as cholangiocarcinoma (bile duct cancer). That blog post resulted in numerous comments, RTs and discussions on twitter. I felt so humbled as people shared their experiences with me, offered their professional views and commiserated or challenged my opinion. I am very grateful for each and every person who got in touch and was especially touched by @paul_clarke sharing the fact that his own mother was dying at the time, you can read his fantastic tribute to his mum here (you might need tissues – I did).

Dad’s health
Life has moved on considerably since November and I am delighted that my Dad remains, more or less, in great health. This time around he has still not had any chemotherapy, although he refuses to rule out the possibility of it. It’s not all been plain sailing, Dad caught a cold around Christmas that took him weeks to shift and a couple weekends ago when I went round to talk ‘end of life care plans’ he developed rigors (extreme shakes and shivering sensation for those of you not in the know). I was convinced it was a psychological response to me forcing a conversation that he wasn’t overly comfortable having…..at least I was until mum confessed that he’d had the same thing happen the night before. A home visit from the on-call doctor meant he was prescribed a course of antibiotics and rest – last week he had his bloods back and everything was more or less normal. We’ve yet to have the MRSA results so he’s not in the clear yet but he says he feels much better. I’m currently nursing a cold so have been banished from going over so can’t tell for myself – have to trust my mum’s judgement, which is usually spot on, well spot on with a positive spin.

The Price of Life
This weekend @evidencematters drew my attention to a Telegraph article Cancer sufferers refused life-extending drugs despite Government pledge and a BBC documentary from @adamswishart shot in 2009 called The Price of Life 

I would recommend it to anyone who didn’t catch it first time around, it contains the stories of three patients with Myeloma and the NICE decision about access to Lenalidomide – a drug that may prolong their lives but does not provide a cure. There was much within this film that rang true to me, especially Eric and Anne Rutherford talking about their fight to get the right treatment and how you tire of fighting. We’ve been incredibly lucky in not having to fight for treatment, my Dad is very much of the opinion that the doctors know best and while he might delight in trying to prove their life expectancy predictions wrong, he would accept their judgement on drug options without question. That said there have been times when it has felt like an uphill struggle, a fight to get different professionals to communicate with each other, to get people to take notice, to get incredibly stretched staff to do more or differently – with ever decreasing resources. There in lies the rub for me. The NHS has limited resources and we can not keep expecting more, irrespective of individual’s circumstances.

Milestones
There was a recurrent theme in the comments and discussion around my last post that talked about milestones. How much time did someone need to get their affairs in order; do QALYs account for enough ‘real life’ metrics; is it valid enough an argument that my Dad might want to live long enough to walk my sister down the aisle? To have one last Christmas dinner? To see his granddaughter turn one? You see the problem I have with the milestone argument is that I rarely see human spirit giving up and realising that it needs to let go of long term goals.

When my Dad was first diagnosed with cancer he had just had his 60th birthday, he’d worked all his life as a postman and really wanted to enjoy his retirement. His aim at that time was my sister’s wedding the following June. The reality was that my little sis bought her wedding dress a few weeks after he was diagnosed and given months to live, just in case it was needed sooner. As it happens he survived with the help of lots of drugs, the insertion of several drains and stents, surgery for a partial liver resection, the removal of his bile duct, gall bladder and a large chunk of his liver; he left hospital in March with a VAC (Vacuum Assisted Closure) Dressing and MRSA. He underwent chemotherapy with horrendous side effects and two days before her wedding (in June) he could barely walk. That said nothing was going to stop him walking her down the aisle and walk he did. Dad gave up chemo shortly after, preferring to take his chances.

Fast forward two and a bit years and Dad is a new granddad so when he was called in to see his consultant after a routine scan, we weren’t quite prepared for the news. The cancer was back and this time it had spread, there was nothing that could be done to cure it, palliative care was the only option. This was last September, by now his discourse had changed to ‘one last Christmas dinner’ – his newest milestone.  Dad had a normal Christmas, got the Christmas dinner that he was aiming for and then what. The next milestone was the annual Army Cadet Dinner and Dance, except this year Dad was guest of honour – he has been an adult instructor for almost 30 years and when his cancer returned he decided to retire. At the end of January he had a great night, complete with speeches and tears – milestone met.

The next milestone was his granddaughter’s first birthday – he is now just three weeks away from that and all the signs suggest he’ll be there for jelly and ice cream no problem. Last week he wrote his will and he has started talking to mum and the nurse from the local hospice about end of life care. I’ve been trying to raise this conversation for a wee while but he isn’t comfortable talking to me about it – not sure whether it’s because it’s me, or because it’s such an antithetical thought for my Dad – why consider end of life, that means a head-shift to giving up.

The Price of Hope
My experience of the human mind is that once you give up the fight, your health can decline very quickly. I’m confident that as long as my Dad has something to aim for then those long term goals provide him with focus. That is the problem with the milestone argument – there is always something to aim for and ask a patient why they need a drug and I’m sure they will all be able to identify a milestone and who then gets to judge which milestones are most worthy of recognition?

When I wrote my last post I was somewhat uncertain how I felt – I knew that by publishing it I’d end up questioning my thoughts more. This time, three months on I feel more certain than ever that the real challenge for terminally ill patients and their families is in reaching an acceptance that they are dying and what that means. Yes we need hope, and yes I hope that my Dad will continue to prove the doctors wrong, but I know he will not be able to do so forever. I echo Adam’s sentiments in the film – I’m sure that when the time comes how my Dad dies will be far more important than when. Until then I’ll carry on discussing and debating the realities of my experience – I’m not sure my parents or siblings would feel the same, and I respect everyone’s right to hold their own opinion. At the end of the day I am experiencing this reality as my Dad’s daughter, I can’t begin to imagine how it must feel for him. I only hope when the time comes I’ll face the reality of my own death with half as much spirit and courage as my Dad does.

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6 thoughts on “Cancer – the price of hope

  1. Thanks for sharing this. I know it reflects a lot of the thoughts I had between the time my father decided he no longer wanted chemotherapy treatment for his cancer and his death. He had a good death, under the circumstances. We were prepared and the care provided by the hospice services was outstanding. I think we are sometimes afraid to talk about death and make plans around it. End of life care is something that sometimes gets ‘sweeped under the carpet’ where actually it is something that can have one of the most positive effects on a person feeling ‘in control’ of their own death and the family around them.
    One of the difficulties for me, as a child, was seperating my own emotions around thinking of my father not being around with his own wishes and plans around his treatment and death. I had to slowly separate what I wanted (him to live forever) from what he wanted (to ‘go’ peacefully and with his affairs in order and with as little pain as possible).
    Of course, it is an intensely personal experience to go through and it depends a lot on family relationships and how ‘resolved’ some of the issues that exist in the background are.
    For me, I think we can’t back away from the difficult conversations because it isn’t fair for anyone. Far better to have them than to regret not having had them.
    Again, maybe I’ve gone into more detail than I meant to. Wishing you and your family all the best.

  2. George, this is another highly emotionally intelligent and thought provoking post on a very difficult subject.

    It prompts me to comment from a couple of perspectives, firstly because of work I’ve been involved with recently with Macmillan Cancer Support in an advisory capacity because as an increasingly social organisation Macmillan has a number of outcomes it’s aiming to help people achieve, including the one you mentioned of dying well.

    It recognises the things you’re talking about. Other intended outcomes Macmillan has in its sights for which the quantitative value is hard to define are a) being able to know those around a person suffering with cancer are well supported, b) that treatment regimes value and include the provision of dignity and respect, c) that knowledge is freely available and able to be accessed as an empowering force, d) that people can enjoy life and the meaningful milestones that are a spur can be hoped for.

    None of these are necessarily at the top of the NICE, or any payer’s, evaluation lists when it comes to deciding upon payment plans for treatment and care options though and in a time of budget austerity it’s probably even more the case. This to me is ironic because times of adversity are especially when indomitable spirit wins through, as you know.

    You’re aware I think of the kind of conversations we’ve probably both had with people like the amazing Mike Baldwin and that this is a conversation some of the smarter and more socially conscious health economists we know are trying to bottom out on a regular basis and I wonder how we can progress that.

    To me, the human spirit’s a daily illustration of mind over matter. I’ve worked in the area of intangible value one way or another for a long time, but the price of hope and the positive effect of an empowered will haven’t had much rational, practical or financial infrastructure to support them. I firmly believe we need to challenge this thinking, for the sake of people like your Dad as and many others.

    I firmly believe the social ability to connect, to tell these stories, to learn collectively, to find new ways of developing effective management and care in times of austerity, to create networked effects that can trigger positive change, to reinvent the way we approach quality of life issues, and we recognise and support intangible as well as tangible value, is the silver lining of the dark cloud that hangs over the enormous burden of dealing with cancer, and other dis-eases.

    From a professional perspective I would appreciate hearing much more about your experiences, if you’ve had any, of connecting with organisations like Macmillan during this difficult chapter, what you feel you, your Dad and your family needs, how socially we can collectively create the kind of case that means that the ability to provide hope is valued more than it is now.

    There is an opportunity to work out how we can all help each other engender more of an appreciation of the human spirit and its value – for our own sakes and collectively to develop a more enlightened society.

    If you haven’t already, try connecting with @macmillancancer and/or @popplestone who is Macmillan’s social and community manager to see what we can be done; this is the kind of movement and point of view so many people want to put in motion and it will take committed advocates and a networked effort to do it.

    In the meantime you have my support George, and I wish you all the best on the journey forward with your Dad. Thanks for opening up a dialogue like this, and for putting meaning and purpose front and centre as part of the kind of life as connected spirits we do value; hopefully it can create the kind of constructive insights that many can begin to benefit from.

  3. My monther was admitted to the hospital one week ago and after tests they say she has bile duct cancer. they send her home with a tube for dranage of the bile from the liver and set an appointment to discuss the treatment on May 11th. They said the cancer had spread to the liver and lungs. Thanks for sharing your experiences as it is helpful in dealing with this.

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