Ann McPherson RIP

I am dying of pancreatic cancer. I wish I wasn’t. But dying isn’t a failure on my part, it is part of life. I wish to live as long as possible, but not at the expense of enduring an undignified death.

These are the words of Ann McPherson in a Guardian Comment is Free article that she wrote in June 2010. Ann was a GP, a campaigner, a writer, an educator, a wife, a mother, a grandmother and I’m sure a friend and inspiration to many. I had the absolute pleasure of hearing Ann speak a couple weeks after that article was published, at Out of the Box #box10, an unconference organised by Patient Opinion.

I blogged about it on the train home that day and offered general reflections without picking out speakers in particular – with the exception of Ann, she was the speaker who had made such an impression that I did record my thoughts.

Ann was fabulous, her very candid sharing of her experience left me wanting to know more. She is obviously very passionate and personally and professionally tied to what she does, she is the Director of Health Experiences Research Group; and has also had breast cancer and is living with pancreatic cancer. Ann was always going to light my fire as she talked research methods and analysis, not just anecdote; she also made a call for realistic, normal stories and patient experiences – not just the tragic or the heroic.

Ann’s latest campaign was to secure a change in the law to allow terminally ill people to be helped to die, if they so wished. Unfortunately any such change, if indeed it does happen, will come about too late for Ann as she sadly died at the weekend. Ann believed that it was not death that scared most people, but the process of dying. The few conversations I’ve had with Dad about dying and palliative care suggest to me that Ann was right, at least for him, he has chosen to sign a DNR and decided not to die at home but even those steps don’t take the fear out of dying.

I’m fairly confident that if the law was different my Dad would not take advantage of the assistance that Ann campaigned for; I’m also completely confident that I feel that they both should have had the choice.

Ann McPherson was an inspiration to me, the conversations that she supported sharing via Healthtalkonline, alongside her personal reflections freely offered, allowed those who came into contact with her or her work to share in her journey….a process that has helped me face our family’s journey with cancer, and for that I’m very grateful.

You can read Ann’s obituary on the Guardian website here if you wish to learn more about her or her work.

“We go to liberate, not to conquer” Col Tim Collins #bbctbq

My Sunday morning routine, as far as I have one, usually involves waking earlier than I would like (why does that happen, I rarely wake early during the week when I should), grabbing a cup of tea as I check twitter, and settling down on the sofa for a morning of Marr and #bbctbq. I’ve blogged about one of the discussions on The Big Questions before - there is something about the format of the programme that I love – probably how extreme some of the views are, which means I can sit on my sofa tutting to myself and enjoy some light relief really. The only thing I’d change is the hashtag – it just doesn’t work easily for me, too close to Question Time but there we are.

Anyhow, what has that got to do with the title of this blog post? Well today when scanning the TV guide I noticed that Colonel Tim Collins is on #bbctbq – I’m looking forward to watching Tim’s contribution. For those of you who missed it, Tim Collins addressed his men from the Royal Irish before they entered Iraq, just over eight years ago. You can watch Kenneth Branagh’s recreation of this speech on youtube here

I don’t want to discuss the politics of the war in Iraq, whether we should or shouldn’t have been there. I have one or two friends whose lives have been changed beyond all recognition as a  result of their time in theatre in Iraq, they were doing their jobs, to the best of their ability. What I like about Tim Collin’s speech is that it was not scripted in advance, it was not filmed or reported as so many addresses seem to be these days, it was his words for his troops.

You can read the full transcript here, for now a snippet:

If you harm the regiment or its history by over-enthusiasm in killing or in cowardice, know it is your family who will suffer. You will be shunned unless your conduct is of the highest — for your deeds will follow you down through history. We will bring shame on neither our uniform or our nation.

I suspect that a man who can speak with such intelligence, passion and consideration for others will bring something to #bbctbq – here’s hoping anyway.

D.N.R

Last week I wrote To chemo or not to chemo that talked about Dad’s latest dilemma (unsurprisingly, whether to have chemo or not) and the real life implications of patient choice for him, my mum and his family and friends. Dad has chosen not to have chemo and to wait and see what happens. This week he had an appointment with one of the nurses from the palliative care team to discuss his end of life options. Him and Mum have talked about this a little, I’ve had one or two conversations with him about it but mostly I think Dad would prefer to not think about it.

He has made two decisions that I imagine will turn out to be critical – he has decided that he doesn’t want to die at home. Everything I read seems to suggest that people wish to end their days at home but not my Dad, he’d prefer to be in a hospice, the hospital or a care home. I think I understand his logic – my parents home is where they’ve lived their entire married lives; it’s where we all grew up and I hope, for as long as she wants to, it’s where my mum will remain; my grandparents, in their 90s, live next door; and I suspect that Dad doesn’t want it to be the home of sad memories (even as I type that I know I’ll return to this point at some stage).

The other decision Dad made was to sign a Do Not Resuscitate, a D.N.R. The practicalities of this mean that he needs to make an appointment to see his GP and sign it with him, but they had the discussion this week and he’s decided that he doesn’t want resuscitating, should anything now happen to him. I think I understand that decision too, he knows that he is terminally ill and so why would he choose to prolong his life – and yet – he is also desperate to not just sit back and accept his fate. It’s a strange old balancing act knowing that your time is limited but not wanting to give up hope.

This week he is finishing off building a Wendy house for my niece, her daddy left for Afghanistan last week, so I’m sure my sis has appreciated the company as much as Libbie will love it and I hope it will last for years to come. It’s my mum’s birthday later this week and rather than come back for it Dad is going down to my brother’s for more DIY! I think my ma is trying to adjust to life in the future, she keeps talking about needing to try and get used to life without Dad, I’m worried they’re passing by what time they have but Mum says she is happy as long as Dad is happy….so there we are. I’m determined we’ll get together for mine and mum’s birthdays next weekend so it won’t go completely without notice – I’m not as grown up as mum about things and I’m feeling the need to spend some time together as a family while we can.

To chemo or not to chemo?

(cc) Chemo – Photo by 416style on flickr

What a week…not sure where to start really. I’m going to try and keep this shorter than normal as I’m fighting a cold/sore throat and have a banging head and am desperate for an early night. That said I’ve been contacted by quite a few of you asking how Dad got on last week so wanted to update you all.

The news is that Dad’s tumour has continued to grow, it is now 6cm (50% growth since his last scan a few months ago), the tumour is on the surface of his liver and growing outwards, not into the liver. There is a chance that it could attach to his stomach and/or block a tube somewhere, causing an infection. It has spread to his lymph nodes and he has several spots elsewhere that showed up on his most recent scans. The options are limited, he could have chemotherapy (Gemcitabine and/or Cisplatin) or he could chose not to.

Last Tuesday was a difficult day, it was patient choice at its worst and best, essentially Dad had all the information he needed, an understanding (if little pressed for time) consultant, supportive family members – and he had no idea what to do. Some other time I’ll blog about some of the ups and downs of patient choice -from my perspective, but last week was a challenging day. In the end, aware that there were other people waiting to see the consultant and keen to take some course of action, any action, Dad decided to have chemo, a course of intravenous drugs (8hrs on day one, an hour on day eight and then a week off; repeat several times).

To cut a very long story short, what followed was a very difficult conversation for me, as I tried to broker a conversation between my parents that genuinely explored the options. I have been very open on here that I don’t want Dad to have more chemo, he had awful side effects last time, it wont change the eventual outcome (Dad’s cancer is now incurable) but it will potentially buy him extra time, maybe at a cost of some opportunities and his quality of life. My mum is also of the opinion that quality not quantity counts now. Dad wasn’t sure what to do and I was bloody determined that I would keep my views to myself and try to support them to have a conversation that allowed Dad to make his own decision, while fully aware of what that might mean.

It was hard. Dad naturally wants to fight the cancer – he sees this as his only option, that said he can’t be certain of what the chemo will do, how much time he has left, what it will mean for his quality of life. Essentially he had to make a choice with very few certainties – in fact the only certainty is that the cancer is still spreading and they can’t stop that. Hobson’s choice really.

In the end Dad took a trip to the tip (had to clear the shed before getting on with Libbie’s wendy house) and while taking time to himself decided that chemo wasn’t the right choice for now. I know he spoke to mum, my brother, my sister and myself and in true Julian fashion I’m sure we all had a different idea or thought or view of what he could do. In the end he’s confident he made the right decision, he said he felt under pressure to decide at the appointment (and I’m not sure why but I felt like that appointment was rushed too – even though it wasn’t) and he wanted to keep his options open. For now he is going to take his chance, get on with his project, look forward to the summer and keep hoping that the impossible happens and his attitude and will power will stop it.

I obviously hope that by some fluke of nature Dad’s tumour will stop or disappear but I am an eternal realist and I don’t think it will happen. Today was the funeral for Val, my mate’s mum who had Bowel Cancer. The funeral was packed, a lovely send off, that spoke to how loved she was as a wife, mother, grandmother, sister, aunt and friend to many. Val loved life and she still had so much to see and do, she went too soon. The poem She is Gone by David Harkins was read today, there were a couple lines that have stuck with me that I’ll end with:

You can shed tears that she is gone, or you can smile because she has lived….you can turn your back on tomorrow and live yesterday, or you can be happy for tomorrow because of yesterday

To build a wendy house

Just over a week ago my friend’s mum died, from Bowel Cancer, I wrote about it here. Today I’m going to a hospital appointment with my parents – Dad had a scan a couple weeks ago and blood tests last week, it is about three months since he was last at the hospital and he has been in shockingly good health since! He spent the royal wedding/easter/bank holiday fest and the couple weeks around it staying with my brother, building a home office shed thingy in his garden. He has returned home with a plan to build Libbie (my niece) a wendy house – in flat pack so when my sis and brother-in-law next move (army life and all that) they can take it with them. So he has a new project and with that a renewed zest for life – he is the epitome of the last post I wrote about him Before You Die – Live.

So, given all this, why am I so worried about today’s appointment? We’ve a good idea of what they’ll say – at least I think we do. I suspect Dad’s apple will have continued to rot (check the last blog post), that is his cancer will have spread further, not sure how much or how fast but we do know that there is no cure now and that he has secondary cancer. This we already know.

If I’m honest I think the thing that scares me is how fast things change, my experience of death from cancer is either that it’s a long slow steady decline, or it is really quick in the end. The truth is I would want the quick option for Dad, I absolutely would, I’d like nothing more than him to be fine one day and then a few days later to be writing a post here sharing the news of his death. My dad worked for over thirty years as a postman, he is fit and strong (if you ignore the cancer bit), capable and, well, manly I suppose – I don’t know that he’d cope with the challenges of old age particularly well, his body gradually declining, his ability to do and be who he is changing, I’m not sure he’d want that either.

My concern for today, if I have one, is that when faced with a picture of the reality – the xray images – he’ll fight the inevitable and opt for chemo – he has already turned it down once since hearing that he is terminally ill, he knows it would at best give him a couple extra months and at the moment he seems to be doing ok without it, but it’s the last (medical) tool he has available to him and I suspect he might explore the option further. I know my mum and I both feel he’s better off without chemo, but it’s obviously Dad’s choice and we’ll support whatever he decides, I’m just keeping my fingers crossed that he sticks with his PMA (positive mental attitude for the uninitiated) for now.

I was reading A.C.Grayling‘s thought on death recently, I liked lots of what he had to say, for now I’m just going to steal one pithy quote:

“Rather, it is that death comes too soon for most of us, before our interest in the world, and in those we care about, is exhausted”.

I know whatever we hear today that Dad is not ready for death just yet, his interest is far from exhausted…he still has a wendy house to build!

Photo (CC) by Alvynmcq on flickr

The bottom line

This is me and my mate Anna’s mum, at Anna and Dan’s wedding, just under two years ago. I wrote about their wedding here as last February Dan died from an aggressive brain tumour. In the autumn Anna’s mum was diagnosed with Bowel Cancer, she had surgery to remove some of her colon and that was followed by  a course of chemotherapy. Over the past couple weeks her health deteriorated and she died yesterday afternoon.

Today I went to see Anna, to drink coffee and chat. Her Dad was there when I got there and he was devastated, he had a  look of such loss in his eyes. Anna and I chatted for hours, we visited Dan’s grave and talked some more. Anna is left wondering whether her mum covered up her illness in the early days, to support Anna and Dan. I’m not sure she’ll ever know if she did, but it’s heart breaking to know that if caught early enough nearly 90% of people with Bowel Cancer will go on to live for another five years, and a complete cure is usually possible (NHS Choices).

The bottom line is that most people don’t like talking about cancer….and even less people like talking about their bums! The symptoms are as follows:

• Bleeding from the bottom
• A change in your bowel habit lasting more than 3 weeks
• Abdominal pain especially if severe
• A lump in your tummy
• Weight loss and tiredness

You can find stacks of information on the Beating Bowel Cancer website and there’s a film you can watch too:

Please spread the word. There’s a national screening programme for over 60s in England and Wales, a similar programme in Scotland and Northern Ireland. I’m sure such screening programmes are available elsewhere too. Please encourage your friends and relatives to take part in screening, the odds are extremely good if caught early enough.

The bottom line is you’d be foolish not to….and it could save your life.