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.
It’s three weeks since Dad died, in some ways I can hardly believe it and in some ways it seems much longer. The two weeks between his death and funeral felt quite strange, it was good to be getting on with things, to be planning, organising and arranging. It was lovely to hear so many tributes, comments and memories about Dad and to get in touch with so many people who we’ve not been in touch with for a while. Lots of people were surprised that Dad had died, even though the majority of people knew he was ill, lots of people have also commented on the fact that he never really looked ill, he never complained and they hadn’t expected the news. We have had stacks and stacks of lovely, lovely comments, of cards (Mum has over 70), flowers, phonecalls, facebook and twitter messages and general sentiments and wishes sent from across the globe. It is a real comfort to know how much Dad was loved and respected, and also to hear of his quirks and foibles too, he wasn’t a saint after all.
Dad’s funeral was really special, it went completely without a hitch, as he’d have wanted it to. The Church was packed (my irrational fear was that not many people would be there – I really needn’t have worried), the cadet gang turned up in uniform (which I reckon Dad would have loved), the service was proper without being too Holy and I’m delighted to report that Dad’ s eulogy went well. I was giving it and given that I’m quite used to public speaking I wasn’t too worried about the audience (and lots of people had reminded me that everyone was on my side at this gig), I was confident about the content (you can read it here – in one way or another I’d had long enough to think about it) but I was concerned that I would be overcome with emotion.
Seemingly so were lots of other people! Contingency plans were put in place, practices were held to identify the trigger points that got me every time (1. Mention of my sister’s best mate/ Dad’s surrogate daughter since her own Dad died about 15 years ago; 2. Mention of Dad’s partner in crime Pete; 3. Mention of my nieces), I read it out load and tweaked it till I was almost bored with it – I’ve never prepared so much for anything. On the day the preparation paid off, aside from a brief moment where I went Welsh (it’s impossible for me to say bargain without using a Welsh accent) it went completely as I’d hoped. I held it together, spoke slowly, paused for emphasis and didn’t lose it until I sat back down. Afterwards everyone was telling me how proud Dad would have been, and I knew it and felt it. He would have loved his funeral service, and he also would have loved the cream tea we had afterwards.
The other thing I’m confident Dad would have liked was the Ikea pencils and the memory postcards we had for people. The postcards were designed to capture people’s memories of him so that we can look over them, and share them in years to come with his grandchildren and others who didn’t get to meet him. The design on them was quite simple – his letter boxing stamp and his details – we had a few left for us filled out on the day but we’re hoping that some will arrive back through the post in due course. Mum has also been able to send them with copies of the Order of Service and eulogy to people who weren’t able to make it on the day, we’re hoping that by sharing their memories, they’ll get to feel more involved in some way.
After the funeral we had a cream tea in the parish hall – the scones were from Devon Scone Company and they were an absolute bargain and really lovely! Check out their website if you’re looking for scones any time soon!
The immediate aftermath of the funeral saw time spent with family and friends who had travelled down to be with us. There was lots of reminiscing and remembering and lots of time spent with my nieces who are a great distraction. The most heart breaking bit was when my Uncle turned up (actually the day before the funeral) and Libbie looks up and announces to the room it’s Grandad – luckily my sister had already anticipated that this might happen and so we were somewhat prepped for it, they do look very alike, and in a way that only two year olds do she completely accepted that it wasn’t Grandad and got on with the rest of her day.
The emotional rollercoaster didn’t end there though. That weekend I went into my office to clear it out – I was officially on leave for the two weeks after Dad died but they were my last working weeks of my job, so I needed to empty/sort/handover things. A couple of hours, four black bin bags and six years of my life – done, like that. As I jumped in my car to drive home my immediate thought was that I couldn’t wait to ring Mum and Dad to tell them I’d done it, and then it hit me, like a four tonne truck in the chest – no can do. I couldn’t ring Mum and Dad, even though my mobile still told me I could it was lying, alongside the cheap trick of my subconscious, a nasty one at that – I rang Mum instead, but that was the first real time since Dad had died that I felt I was unprepared for missing him, and the only way I can describe it was that it was a full on force.
I’ve felt it a few times since, none as full on as that. On Tuesday I got my OU exam result (72%) and overall result for the module (73%). Even though nothing about that course was about the grades for me, I was chuffed and I wanted to share that with the folks. Mum was delighted for me, and was pleased with herself too – I can’t tell you how many times she had to encourage me not to drop out of that module, it really wasn’t the best six months to be trying to study, but I’m glad I did it. I’ll blog about that another time and may even write it up for my new work blog that you can read on my new website here.
The final thing worth mentioning since Dad died is the sense of freedom. It feels incredibly odd, massively liberating and if I’m completely honest a little scary being able to plan for the future without having to worry about Dad, or Mum. I’m able to book a holiday or arrange a weekend away, to look at potential jobs and consider moving to London, or further afield, I can have a drink any evening and not worry about having to be sober to drive to the hospital/parent’s house. I hope that the timing of Dad’s death will mean that my Mum and I will both be able to find a new path in life, one where we can remember Dad and celebrate his life, but also create our own again. I’ll keep you posted on how that works out but for now I’m grabbing the opportunity by the scruff of the neck and am holiday for a couple of weeks, touring European Christmas markets and sampling international festivities. I’ll worry about 2013 and the realities of the future once I’ve recharged my batteries and got through our first Christmas without Bobby J. It’ll be different but it’ll be joyous, just as he would have wanted it.
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.
Today has been spent funeral planning for Dad’s send off, we’ve discussed Dad’s wishes with him before his death, as a family since and with the priest who will be taking the service today. The next week or so will be spent pulling together a tribute/euology/speechy thang that I’ll say on the day. I discussed it with Dad the week before he died, he was quite traditional in his views and I was worried he’d tell me no but I thought I had to let him decide, but he didn’t say no. In true Bobby fashion he was pragmatic ‘Won’t make much difference to me, I don’t have to listen to ya’ and as ever ready with advice ‘…make sure it’s good, but don’t waffle on for too long’.
I’m quite relishing the challenge of pulling something together, of gathering memories, thoughts, quirks, habits and Bobby’isms. I reckon speaking it on the day will be a killer, but I want to do it, and I want someone who knows Dad to do it so he gets the proper send off he deserves.
One of the things we realised when we started reminiscing was how much of Dad’s life we don’t really know about, and how important it is to try and capture memories while they’re fresh for people. So we’ve decided to give people postcards at the funeral to scribble down a favourite memory of Dad….and what better implement to be used for such a purpose than an Ikea pencil! Dad *loved* those chubby Ikea pencils – he’d pocket a handful every time he went, nothing like a bargain….and ideal size for tucking behind your ear when working on DIY projects. I thought I’d chance my arm and get in touch with Ikea and see whether we could buy some pencils for the occasion, I decided to use the live chat and spoke with Surinder. Transcript as follows:
|Surinder (16:40):||Hi, thanks for contacting IKEA! My name is Surinder, how can I help?.|
|User (16:41):||I have a rather odd request! My father died last week and we”re planning his funeral….he loved Ikea pencil”s and I wondered if it would be possible to purchase a box to use at his funeral?!|
|Surinder (16:44):||Are these the ones that are available in the store to use for customers?|
|User (16:45):||Yes, that”s the ones – we were hoping we could acquire some for people to use to fill out a memory postcard!|
|Surinder (16:46):||Which is your local store please and how many are you looking for and when do you need these by|
|User (16:47):||My local store is Bristol, the funeral is next Thursday (and it may be possible for someone to come and collect or we would pay for postage) and we”d ideally like about 100.|
|Surinder (16:56):||I will ring the store for you, it may take a little while or you ok to wait?|
|User (16:57):||Yes of course, thank you|
|Surinder (17:08):||The person I need to speak will not be available for about 10 minutes, is it ok to wait or can I call you?|
|User (17:08):||Yeh happy to wait, am online anyhow, thanks|
|User (17:10):||Hi Surinder, I”ve just been speaking with my brother and his local store is XXX if that helps/is easier?|
|Surinder (17:11):||Thats fine I can contact them for you aswell.|
|User (17:12):||Brilliant, thank you – I think XXX would be easier because we actually live two hours from the Bristol store, but my brother lives around the corner from XXX. Thank you.|
|Surinder (17:20):||When are you able to go to the store (XXX)|
|User (17:22):||I”m sure it would be possible one evening between now and next Wednesday, or maybe at the weekend. I”m sure my brother could be flexible to suit them.|
|Surinder (17:29):||You can go into the store anytime and speak to any co-worker and say that you have spoken to the contact centre and XXX (Marketing Manager) has authorised 100 pencils for you to have. If you have any problems please ring the contact centre on XXX and ask to speak to me. I will not be available on Friday 23/11 or Sunday 25/11. Somedays I am here til 8.00 pm|
|User (17:30):||That”s brilliant, thank you so much. Really appreciate it. You don”t know how much my Dad would have loved that!! Thank you.|
|Surinder (17:31):||You are welcome. Hope everythings go well for you. I am sorry to hear about your father.|
|User (17:31):||Thank you|
So there we have it, Bobby’s funeral will be complete with memory cards and his beloved Ikea pencils. An amazing piece of goodwill marketing by Ikea and a brilliant result for us. Love it.
In three words I can sum up everything I’ve learned about life: it goes on*
The day after Dad died I took the dog out with Mum for a short walk, as we turned the corner to head up the main road I heard kids playing in the primary school playground. Laughing, running, screeching, just going about their everyday business. It was Friday too so I suppose they were ultra excited given they were only a few hours away from their weekend. When we got home my newest niece had just woken up from a snooze and this was the greeting.
It was quite a visceral realisation. In spite of our loss, even though nothing will ever be quite the same, something feels different, missing, empty….and yet life goes on.
One foot in front of the other….
* Robert Frost – The Harper Book of Quotations (1993)