It’s 81 days since my amazing Dad died. He had been fighting bile duct cancer, cholangiocarcinoma, for five years and two months.
Today is World Cancer Day and the campaign is seeking to dispel four key myths about cancer, I hope this blog helps to dispel at least two – that cancer is a disease of the wealthy, elderly and developed countries (Dad was 65 when he died) and that cancer is a death sentence. Dad did indeed die as a result of his cancer but his life was no death sentence.
Current figures suggest that 1 in 3 of us will develop cancer in our lifetimes. Trust me this disease isn’t something that happens to other people, look around, there’s a good chance that at least one of the people sitting with you this evening are likely to face this illness, and it could of course be you. Recent research shows that people in the UK are still too good at the stiff upper lip when it comes to cancer diagnosis – concerns about wasting GP’s time or being embarrassed prevail. If you have any concerns about your health then raise them with a medical professional as soon as possible.
Cancer Research UK estimate that 1000 people are diagnosed with bile duct cancer each year in England, so (very) crude maths suggests that in England alone 222 people have received a diagnosis of bile duct cancer since Dad died. If this blog, or any of it’s positivity about living with and fighting this disease, reaches one of those people or their families then it’s work is done.
If you wish to know more about life with cancer then take a look at Kate Granger’s blog or Helen Fawkes’s blog – two amazingly inspirational women who are sharing their experience of life with cancer.
I can’t quite believe that as I’m writing this Dad died over a week ago.
He was originally diagnosed with bile duct cancer in September 2007. At the time his odds were pretty gloomy for making Christmas – a very rare cancer, the statistics on cholangiocarcinoma do not make for pretty reading, by the time it is detected it is often too late to do much more than offer palliative care. My Dad was, of course, an exception and chose to fight it in his way. He was never prepared to just accept what he was told, don’t get me wrong he wouldn’t question the judgement of the medical staff caring for him, but he would identify their most optimistic and positive angle and build his hopes on that. This positive approach meant that Dad lived with bile duct cancer for five years and two months, throughout that time he had many medical interventions, he had stents fitted and drains, major surgery to remove his bile duct and resection his liver which left him with a Mercedes Benz shaped scar he was rather proud of, he had complications along the way including MRSA (which was a complete bitch), he had chemotherapy as treatment and later on palliative chemo too.
The upshot of all this is that we knew Dad had limited time, he received his terminal diagnosis over two years ago and he accepted he would not beat his illness about six weeks before he died. Accepting he was actually dying, was not the same as giving up though. My Dad did not lose his battle, he did not succumb to cancer, he did not give up his fight and accept his illness – he stoically, bravely, steadfastly lived his death as he has lived his life, with a positive mental attitude and a concern for others. Dad’s last week was supported by the Hospice at Home service from Rowcroft, this enabled him to remain at home which was amazing and it also enabled him to die his death his way, for which I’ll be forever grateful. Dad didn’t want to die in hospital, he didn’t want to be defined by his illness, he never really was; in my eyes at least he was defined by his approach to his illness, not by it, he lived every last minute of wellness that he could.
A week on life is busy. I think most people have been told, the announcement went into the local paper yesterday but we did also try and contact most people beforehand. Mum is doing ok considering, well I think we all are, there are ups and downs but mostly ok. We all seem to be dealing with the situation slightly differently, which is no real surprise in our family. I was talking to my sister this week (cuddles with my new niece twice in a week – there are some huge silver linings to this situation) and she described it as shocking that Dad had died! There are many things that it feels to me, but shocking just isn’t one of them – but I guess that’s it, everyone is different, and everyone’s experience is different and we all have different coping mechanisms.
My biggest concern is that I’m not patient enough, with anything or anyone. I’m tired, bone tired, somedays feel like walking through treacle, but I know this is relatively normal. The one thing I wasn’t prepared for was the physical ache! It was like I’d been punched in the chest, it’s easier now, and I’m not sure whether it was stress or a strain from crying, but when people said grief hurt I had no real idea that it would be a physical pain. I know mentally and physically there’s been a lot going on of late, especially in the last month, so I’m not too worried and on the upside I have started craving vegetables (and no I don’t just mean crisps), I actually feel like I want to start eating properly – which is something after at least a fortnight of cake and other sugary badness as the ever frequent pick me up. The downside of such a crap diet is that none of the stacks of potential funeral dresses I have fit! I have Dad’s words ringing in my ears ‘What does it matter, it’s not a fashion parade you know‘ and yet it’s important to me, I want to look smart. I’m confident I’ll get it sorted.
The other thing we have to get sorted in the next few days is a eulogy for Dad’s funeral. I discussed Dad’s funeral with him in recent weeks and asked whether he minded if I spoke about him. If I’m honest I almost didn’t want to ask because I was worried he’d say no – he was quite a traditionalist at heart. However he was fine with it, as long as I didn’t go on for too long. I’ve spoken with my Mum and sister, got a few ideas from my brother, hoping to get a few stories about life in Cadets, and have a beginning and an end – it’s just the middle that needs pulling together now.
It’s a welcome challenge to be honest, a great distraction, I suspect the real skill will be required in condensing all that we have into something coherent that really captures who Dad was. The photo that keeps coming to mind is this one, it’s Dad with his PICC line when it was removed a few months ago, messing around and posing for a photo – safe in the knowledge that one day it might make it onto this blog, well here it is and somehow I’ll capture that spirit in words by next week.
When Dad was in the hospice he was given two memory boxes to fill for my nieces. This week he’s been thinking about what to put in them, we’ve covered all the usual things – photos, games, things that are symbolic of Bobby and relate to him. Mum and I got thinking though and we thought it was quite hard to know what to put in – Dad is a man of few (written) words, a man who is practical not academic, a doer not a thinker, a man who shows his love by making or fixing….none of which is that easy to capture and put in a box. One of the reasons I started blogging was in the hope that when my niece was older (and now I have two when they’re both older) that they’d have some record of what their Grandad was like, who he was and how he lived his life, and his death. I want them to know what a great man he was and what a fantastically brilliant Grandad he would have been if things were different.
I’ve been thinking a lot and intend to try and capture yet more memories and Bobby’isms to share with them when they’re older. For now though we wanted to capture other people’s memories of Dad and we came up with what I think is a fairly inspired idea – if I say so myself! We thought that we’d give people postcards at Dad’s funeral and ask them to share a memory, or a thought, or an expression – or anything really that would capture Dad. In a warped way I’m almost looking forward to hear what people say. I remember reading Graham Norton’s Telegraph column where he talked about the time after his Dad’s death:
I don’t think it’s an exaggeration to say that I got to know my father better in the weeks following his death than I ever did or could have done when he was alive. These positives don’t take away the pain but I think they can help us make sense of what has just happened.
In a strange way I’m looking forward to that time, to the memories, to hear about how other people experienced my Dad. I know that it will be affirming. When other people’s Dad’s were at work, or away on business, or too busy watching football or down the pub, my Dad was always around. He was very present when we were young kids, as a postman he worked hours that meant he was able to be very involved as a Dad on a daily basis. Really he was ahead of his time and played a very active role in our upbringing, he was one of a very small number of Dad’s at the school gate picking the kids up from school and certainly one of the few Dad’s (only?) I knew who would proudly iron (in shorts in the garden if the weather allowed)! He really was a great Dad and someone that people loved to be around.
I know that Dad has had a positive impact on so many people and I can’t wait to try and capture some of that so his granddaughters grow up knowing how much he loved them and how great a Grandad he would have been. For now we’ll stick with the postcard idea but if anyone has any other suggestions for how we capture memories I’d love to hear about them. Thank you.