Unusually for me I didn’t check twitter the moment I woke up this morning, instead I visited the twitter website as soon as I turned my mac on. It was this that meant I spotted something quite surprising, to me at least – that last night I’d reached the (completely meaningless really) marker of 35k tweets.
That got me to thinking about how much of my life is contained in my twitter archive. I joined twitter on 8 September 2008 and really had no idea of what I was letting myself in for, or what would come of this new social media thing. I also couldn’t have predicted the twists and turns my life would take over the last four and a half years. So, I find myself 1714 days later, pondering how many amazing people I’ve met, the adventures I’ve taken, the loved ones I’ve lost.
It’s this last point that really sticks. My 35 thousandth tweet fell at the end of
#dyingmatters week and it was sharing an article in The Telegraph that talks about the amazing Kate Granger @GrangerKate:
We need to relearn the art of dying
A doctor tweeting from her deathbed deserves our attention – and our thanks
It’s worth a read, as is Kate’s article at the start of Dying Matters week in The Times, and perhaps more importantly as is her blog which you can find here. To get back to the topic of this rambling, pondering blog post, quite a few of my 35k tweets have focused on death. I’ve always been interested in death, fascinated by our inability to discuss it as a society and simultaneously intrigued and grateful for those that do.
My experience of death has been unavoidable in the recent past, in fact it is unavoidable for us all however much we may hide from the opportunity to discuss things. Six months after Dad died I find myself with less of an urge to talk about death, but with more of a drive to study it and watch how others face it. This past week has thrown up some fascinating resources and conversations that I’ve tried to capture on Pinterest here on my various boards.
The thing that stopped me in my tracks the most was a video from Lord Philip Gould, filmed a couple years ago as he faced death with oesophageal cancer. The film, When I Die, is beautifully shot and starts with the words ‘In six weeks time I will be dead, I will be cremated, I will face huge fear but it is an extraordinary experience’.
I urge you to take ten minutes out of your day to watch this film. It captures a courage and strength that stopped me in my tracks, a sense that I often feel when eavesdropping Kate Granger’s life as I do through the power of social media. Dying Matters week has been and gone for another year, my 35k tweets have passed us all by, charting the conversations and support of friends and strangers alike.
I do think we need to relearn the art of dying, and I think we need to continue to develop and learn the art of dying with social media. Philip Gould and Kate Granger are pioneers in this, sharing their most intimate experiences with us so that we might be better equipped and prepared when we face these situations for ourselves or with those we love.
My 35,001st tweet will share this blog post in gratitude to them. Thank you.
Today it is six months since Dad died. I can’t quite believe it, one minute it feels like yesterday and the next like it was years ago, six of the longest and shortest months of my life. Time is a funny old thing, especially where grief and loss are involved. To mark the occasion this morning I went for a dawn walk down Meadfoot Beach, one of Dad’s favourite places, and I was there enjoying the view thinking of him at the time he left us.
I’ve been thinking a lot about Dad and loss and grief this week. When Dad first died I started making a list of the things that I’d have liked to share with him, I don’t keep up with it these days and in a way that feels like less pressure. Some days I still catch myself saying ‘Must ring Dad later and tell him about that’ or ‘Wonder what Dad will say about how I should fix X or Y’, it happens less often but it’s like the new neural pathways aren’t worn in enough yet for it to be default. One thing I’m confident about though is that Dad would be proud of us as a family, and particularly of my Mum, for how she is handling life.
I think my Mum is the living definition of resilience at the moment. The thing I think he’d be most proud of is how naturally she has taken to her newest acquisition – an iPad mini. My Dad was a bit of a technology fiend, or would have been if he could have afforded it. He used to love Tomorrow’s World and was a sucker for a new gadget! I remember him coming home pleased as punch with a CD player when they were very first released. Of course he could only afford one CD to play on it for months, but it was the feeling of being ahead of the game that counted for him. I’d held out from buying an ipad mini for the best part of a year (I’m not so interested in being cool obviously), I was waiting for v2 to be released but decided to stop waiting last month! As soon as Mum saw mine she was smitten, and less than a week later she had her own. She’s busy listening to her choir music on it, emailing, shopping, banking and kindling and touch typing like a digital native. Every time I see her use it I feel proud, and get a warm fuzzy glow just thinking of what Dad would say.
It’s not all been plain sailing though, especially the last couple of weeks. Yesterday, we had to have Dilys, my parent’s gorgeous, dignified, graceful and beautiful cat put to sleep. The vet said something rather lovely about Dad wanting his cat back, it made me shed a tear at the time (don’t worry it was a Cheryl Cole one) but it was such a comforting idea! Dilys knew when Dad was dying, she wouldn’t leave his bed the night before and last week she’d started sleeping in the room that he’d died in. We tried everything to get her to eat but in the end she decided herself that enough was enough. I watched on in awe as my Mum dealt with yet another loss with such dignity and resilience.
Since Dad died I’ve been trying to rebalance my own priorities in life. My ‘Work Less, Live More‘ board on Pinterest now has 45 things on it; I’ve only crossed one thing off so far (to watch a live Cross Country Ski race) but there are a glut of things that should get crossed off in the next month! Mum was always complaining to Dad that despite years of serving in the Army Cadet Force he never once took her camping, not properly under canvas. So next month we’re righting that wrong and my Mum, sister, my two nieces and I are going glamping! I can’t wait, I’m sure there will be lots of laughs, reminiscing, new memories formed and no doubt one or two crossed words, but I’m really looking forward to it. I also have a couple of birthday treats planned, more on those in due course.
So, it’s six whole months post-Bobby, life isn’t the same, the Dad shaped hole is still very rough around the edges, but I do think it’s getting easier with the passing of time. Like one of those pebbles down at Meadfoot this morning, the constant rhythms of life washing over us is gradually smoothing the jagged hurty spikey bits away.
Here’s to the next six months of building new memories and remembering the old ones.
My Dad died four months ago from bile duct cancer, cholangiocarcinoma. Since then I’ve seemed to blog less, and in a way that may be no bad thing, I’ve been doing lots of thinking and reflecting and recharging, but have had less concentration and less inclination to put fingers to keyboard. Then this week a chance conversation on twitter with the lovely @ChrisandHarvey got me thinking, and suitably wound up enough to write this blog post. I’ve followed Chris for a couple of years, he’s a hugely inspirational guy, Dad to his son Harvey, and he works as web manager for Weldmar the hospice in Dorset; go check him out. He retweeted this tweet:
This just left me feeling quite deflated, I wasn’t as philosophical as Mrs Glove and not as quick to just accept that was that. I have blogged on the life changing care that our local hospice, Rowcroft, provided for my Dad and our family in his final days. The Hospice at Home team made an immeasurable difference and I have committed to myself to continue to raise awareness of the excellent work they do, which is sort of where this post comes in.
So what’s the problem? Well luckily for you the CEO at Weldmar, Alison Ryan, wrote an excellent blog post outlining why this is problematic. I’m not going to repeat all that Alison says, you’d be better off going and reading her original post, but in a nutshell she is drawing attention to the fact that too often people in the local area are under the mistaken understanding that hospice care is provided by Macmillan. This matters for two principle reasons, the first is around fundraising, people going onto the streets to raise funds as a thank you, but mistakenly providing them to another incredibly valuable charity. The second reason of course is more pragmatic, if people don’t know who is providing their care and support, then what happens if they need to complain or make a request? Alison draws the brilliant analogy that not all vacuums are hoovers, the same goes for end of life care, not all hospice care is provided by Macmillan, in fact as I understand it in the South West very little (if in fact any?) is. As I understand it this is a common problem faced by many hospices, how do they get the message across that they are providing the service that they do.
Is it a case of overload? It’s a simple fact of life that by the time you encounter support from a hospice then you are already having to deal with some fairly harsh realities, life and death decisions and if our experience is anything normal you are probably quite simply overloaded. Whether you have been dealing with a terminal illness, or spent years living with a medical condition, or indeed if you have just found out that your life is limited, there’s a good chance that you are exhausted from the information and advice overload; you are likely to have met more professionals and individuals than you can even remember, you struggle to remember their name (and trust me it’s awful when you are so grateful and yet can’t remember the name of the person with you) never mind who they work for; you are dealing with so much that who funds the staff supporting you isn’t likely to be at the front of your mind. When Dad was in his final weeks one of the things I did once the hospice staff started visiting us at home was start a list on an empty cereal packet that happened to be in reach, of the names of the people as they arrived – this served two purposes, it meant that I’d be able to check each time I forgot who was upstairs with Dad, and it also meant that we had a list for when we came to thank people afterwards. It’s not like me to be so organised and I don’t know why I did it, but I’m glad I did.
Do we just not like talking money? So, at what point should the hospice be making it clear who funds the service someone is accessing. It could be because we’re terribly British about it, and because we don’t have a great awareness or general literacy around the cost of healthcare, but at no point was the cost of Dad’s end of life care discussed with us. That may well be completely appropriate, and I know that no-one who works for a hospice would want a family availing of their services to worry about the cost. Despite this, I know that my Dad for one was incredibly aware that other people could be benefitting from the support he had as an inpatient at the hospice, in fact I think it was one of the reasons why he wanted to return home. I’m not sure, even now, on the relative costs of providing an inpatient service versus the hospice at home service, I have seem some statistics about what it costs to run them but I’m not sure whether it was cheaper for him to be supported to die at home, I suspect not.
Anyway, this wasn’t a post particularly about Dad, it was a more general sense of what limits us from discussing, or knowing, the costs of such a service. Maybe we have a long way to go before people are confident or comfortable in discussing the costs of care, I know when I blogged about this before it got a very mixed response in the comments and on twitter.
Is it simply a case of mistaken identity? Unfortunately it seems a bit of a case of David and Goliath, Macmillan are an excellent organisation, much larger than any of the independent hospices across the country providing palliative care. They are also very canny and often pump prime the establishment of services and fund a small number of posts (there’s more in Alison’s blog post about this) and I guess once you are established as a Macmillan Consultant/Nurse/Advisor then you aren’t likely to ever really change in people’s minds who you meet.
Macmillan are also blessed with a very strong brand, and lots of hospices aren’t in my opinion, although I do *love* the new Rowcroft branding! I’m sure that it’s a hard sell to trustees, colleagues and supporters if you want to spend what hard raised money is available on changing branding but I can’t but think it might help in some instances. Short of rebranding and awareness raising, I wonder whether a conversation should be happening at a more strategic level. I’m under no illusion that this blog post is likely to reach more than a handful of people, raising anyone’s awareness is a good thing, but a more straight forward honesty and awareness from Macmillan might be welcomed too, after all we all want the same thing, to provide a quality end of life care service and for people to have greater awareness within that of who is providing their support. If the recent horse meat debacle has taught us anything, perhaps it is that a case of mistaken identity is not one that the public take too kindly too.
So the next time you decide to give to charity or sponsor someone, or are looking for an organisation to raise funds for, then consider your local hospice, they’re likely to need your funding far more than some of the larger organisations.
So time moves on, it’s actually ten weeks today that Dad died but I wasn’t really in the mood to blog last week which would have been two calendar months. I can’t believe that it’s two months already, the list of things I’d have liked to share with Dad grows, my sense of his loss is up and down – some days he’s in my mind all the time, then occasionally I catch myself and realise I’ve not thought about him for a day or two.
I’ve allowed myself some time to think, really think, about what I’d like to do with my life from here on in. I feel an immense freedom and there is a considerable part of my brain or psyche that is encouraging me to travel. I think it may be a coping mechanism to some extent, it always feels good to be on the move in some way. Simultaneously it fills me with an excitement and sense of adventure and I don’t think there are many opportunities in life to really reassess where you are at. I’m lucky that the only true dependent I have is Mogs and that I’ve lived a modest enough existence to have built up some savings to afford me time. I’ll blog about this another time but I feels necessary and sensible to take the opportunity of Dad’s death to reassess life. At the same time as reassessing I’ve also been hit by an almost pathological need to de-clutter. It’s like I want to shed things from life, literally and metaphorically. The local charity shops aren’t complaining and I’ve been e-baying some bits and donating a percentage of sales to Rowcroft, the hospice that supported Dad and us.
Mum is doing amazingly, she seems to have sorted all the practicalities and one great piece of news this week was that the retiring collection at Dad’s funeral raised £911.03 for the Hospice at Home appeal. It’s such a huge amount of money, especially considering Dad was a postman – not some executive with well heeled friends. I know he’d be chuffed to bits with that news. I also know he’d be pleased that Rowcroft are going to use an extract from the blog post I wrote shortly after he died, this one, to include in their six monthly newsletter. I feel really privileged that they want to use it, but also hope that it might reassure other people who find themselves in our situation, and maybe even raise some more money for the appeal.
The other thing of note that has happened since Dad died is Christmas. It was hard to have Christmas without him, but probably not as bad as I was expecting. My sister was down at Mum’s with her husband and two children, which made for a grateful distraction. It’s hard to be sad at Christmas when you have a two year old obsessed with presents, giving them as well as receiving them. The one thought I couldn’t shake at Christmas was how lucky we were that Dad died in November. It’s hard to deal with death at any time of year, but two of my twitter friends lost their parents close to Christmas and my heart went out to them, I feel very grateful that we’d had some time to grieve before we had to try and be happy again.
In Summer 2011 Dad built my niece a wendy house in my sister’s garden, every bit of it lovingly hand crafted by Grandad. Last week she posted this photo on facebook, it brought a tear to my eye, but in a good way. Dad would have been so proud to see it in the snow, almost as much as the photos that followed of Libbie on her sledge and with her snowman.
Life isn’t the same without him but I’m glad we’re able to talk about him and remember him, and that he is so present in our everyday lives. To quote Victor Frankl:
In some respects it is death itself that makes life meaningful. Most importantly, the transitoriness of life cannot destroy its meaning because nothing from the past is irretrievably lost. Everything is irrevocably stored.
When someone is told (or they decide) that their time is limited, at somewhere or something, I’ve observed an almost primal attempt to do more, fit more in, go further or faster, squeeze maximum effort into the remaining time; that or an almost instantaneous acceptance that time is limited so there’s not much point trying now, accompanied by an inevitable decline in performance/enjoyment/participation*.
One of my most recent personal examples of this was when I decided to quit my job. I had a three month notice period, within that time there was leave to use up and in the end some compassionate leave, but when I resigned I had anticipated, and seemingly most other people had also anticipated, that I would feel an instantaneous relief, that the pressure would fall off and life would gradually return to a more balanced state over the following three months. As it happened my Dad died during that period as well, so I’m well aware that brings it’s own pressures but I quit some months before that and the work pressure didn’t fall off instantly as I’d naively hoped. I’ve been thinking about this period a lot and it seems to me that at the point I resigned, the pressure started to climb (from a level that was already demanding more than I’d routinely hope to give to work, and had done for some time), before reaching a newer, higher peak and then what would have normally been followed by a decline was replaced by more important matters, for me at least, of my Dad’s death.
The simple fact was as soon as my time was limited not only did I attempt to perform most of the duties I’d already been doing (granted I relinquished a few but my workload did not drop considerably at the point I resigned). I tried to finish others that had sat out of reach for some time, I prepared handover and context notes, I met with people who needed reassurance/confidence in the future, I negotiated, brokered and contributed to new business and new bids. I did all of this while trying to support a staff group who were perhaps unsurprisingly delighted for me personally, but with some reservations of the impact for them, and I also wanted to give my time and attention to an exit interview process to ensure learning was captured for other colleagues/the organisation’s benefit. So the pressure and demands just kept growing.
I think I was unlucky in the timings in some way, that I didn’t get to also experience the gradual winding up process, instead that was replaced by family business. I cleared my office out one weekend shortly after Dad’s funeral and then took some time out for a holiday before Christmas. I’ll do more holiday posts in due course and Christmas probably deserves a post of it’s own. It wasn’t a bad one, and I’m not the world’s biggest Christmas fan at the best of times, but there was definitely a Dad, and Grandad shaped hole left since last year. A subtle, but constant reminder, that life is short and our time is limited.
So what I hear you ask. I’ve been so lucky with the support I’ve received from my friends and family, in real life and on social media. I can’t tell you how supported I’ve felt by the contact, the tweets, DMs, messages, the cups of tea, the promises of cake – the people who have not ran in the other direction but have stayed put and gently encouraged me to (re-)engage with life. My blogging has suffered over the last few weeks, I’ve just not been feeling the love for it, or for twitter; two avenues for my energy that have always felt so positive in the past. I think part of the challenge is that I was brought us along the lines that if you couldn’t say anything positive, you shouldn’t say anything at all….and I’ve not really been feeling the positivity (yet). I’ve also not been seeing too much positivity in my twitterstream, lots of people moaning and complaining about life/politics/each other/new business/old business/health/religion/anything else you can mention.
Overall I guess I’ve been feeling a residual pressure, like I’m on high alert. I’ve discussed with a few people the cumulative effect of stress and pressure, from work and my family situation, and the impact that has on your performance and health over time. I’ve spent quite a bit of energy trying to understand where I’m at, I’ve felt quite directionless, lacking drive or energy for most things. Until yesterday, when I fell upon my latest theory, the one at the top of the page about time being limited and it’s impact on performance (and perhaps preference). If my theory re work is in anyway accurate (and let’s be clear it’s my theory scribbled on the back of an envelope, and isn’t very subjective at all), but indulge me, if we go with it then I wonder whether the last few weeks have been my self trying to re-establish an equilibrium. They’ve been about recovery, and regrouping, and observing and identifying what it is, or where it is, that I wish to put my energies next. Almost to be expected really, so I’ve no idea why it’s so surprising.
There were a few catalysts this weekend to remember that time is limited, and that this is no dress rehearsal. There were three articles/blog posts that stopped me in my tracks:
1) Crossword master Araucaria reveals in puzzle that he is dying of cancer - I don’t even do crosswords, I struggle on easy ones never mind cryptic, but as I sat yesterday reading the comments on this article I couldn’t help but feel that what really matters in life is what you give, and you might never know what that is. I’m sure that the Rev John Graham knew he had a talent, and knew he had a fan base, but I very much doubt that he knew before his announcement the way in which he had touched so many people’s lives and given such pleasure.
2) Back for Good from Helen Fawkes – I’ve followed Helen’s journey with cancer for some time now, this is her third diagnosis and she writes an incredibly humbling blog sharing the news and ends with the following I know how I’m probably going to die and roughly when it’ll happen. It’s weird having a likely expiration date. I really hope my Best Before is at least 2023. But you know it’s not the years in your life that matter; it’s the life in your years. Once I have my affairs in order I’m not going to dwell on the dying, I will soon have a new list and a whole lot more living to do.
3) Sad News – Alice Pyne became an online sensation when she wrote her bucket list when she was diagnosed with terminal cancer and started raising money for charity. Her mum wrote yesterday: Our darling girl, Alice, gained her angel wings today. She passed away peacefully with Simon, Milly and myself by her side. We are devastated and know that our lives will never again be the same, Vicky. 12 January 2013 #nightnightAlice
All of these reminded me that life, and our time, is limited. Why should we wait until we are told we are likely to die to think about how to spend our lives. Why do we get so readily seduced into thinking that life is what we squeeze into weekends or holidays. Number one priority on Alice’s bucket list was to get people to join a bone marrow register, I’m already on it, if you are healthy and wish to join to you can go here and get a spit pack sent to register, simples.
Alice’s second priority was for everyone to have a bucket list. I’m working on it, going to give it some more thought and start compiling. After all, we all have one life, if ever I was aware of that it’s now. I feel like I’ve an opportunity to consider really what I’d like to achieve/see/do and start doing it now. Watch this space….all suggestions very welcome!
* This theory may fall short on a number of occasions, such as when exercising or studying – however once the finish line is in sight, nearly every half marathon/10k runner/undergraduate/teenager I’ve ever seen picks up the pace for the absolute final burst
It’s four weeks since Dad died. Four of the longest, and simultaneously fastest weeks of my life.
I’ve blogged a few times and am very conscious that I don’t want to turn into someone who just blogs about death and dying and loss…. and yet that’s sort of what I start typing when faced with a keyboard. I could have blogged about so much this evening, leaving work, holiday, Christmas markets, hope, life, job searching…the list goes on and yet I start typing about Dad (again). I’m not sure if it’s a natural reaction to keeping his memory real and alive, whether it’s just a habit that added purpose and meaning to his illness that I’m trying to transfer now, or whether it’s just the easiest thing to blog about…verbal emotional blog diarrhoea doesnt take too much thought (although I do *always* have to check how you spell diarrhoea).
It feels like there are so many words, words of thanks and acknowledgement, words of memory, words that need writing/typing/capturing, yet despite having so many words I can’t really describe how it feels. We knew that Dad was dying for a number of years, of course you know that you won’t really be prepared for it, but in some ways you are. I had imagined what life would be like without Dad, I had thought about speaking at Dad’s funeral – not planned it but mused a little about things and hoped I’d pluck up the courage to ask him if I could do so, is amazing where your mind goes when you’re sat in hospital waiting rooms and we spent a hell of a lot of time waiting.
I’m still pretty exhausted and I guess I feel relieved but I don’t really feel happy. In some ways it was a relief when Dad died, physically having barely slept properly for the fortnight that preceded it, and emotionally feeling that there would now be some certainty. Despite visiting numerous Christmas markets in five different cities in the last week, I still don’t feel at all christmassy.
Kate Granger wrote an excellent blogpost today about her emotions knowing that she is terminally ill; she had just got the news that her cancer was stable and she says this:
So you’d think I would have been over the moon. Not so. In fact I was on the verge of bursting into tears for a few days and remain a little on the emotionally labile side even now. I feel completely irrational about feeling this way. I should be happy. But in my mind everything was getting worse and there was a path to follow even though that path was not going to pleasant. Instead I am left hanging in limbo, a state I have existed in for months. It feels a little as though the rollercoaster has broken down with me left hanging upside down. How much longer is my reprieve going to be?
In April I wrote a blog post The cancer rollercoaster: living with the unkown when I returned from a week away to find Dad had been admitted to hospital as an emergency:
It’s been quite an immersion, not that I ever really escaped it on my week away, but it’s a real reality check as I sit on their sofa banging the keys trying to make sense of it, or share the lack of sense in it with you (assuming as the eternal optimist I am that someone has read this far), and think about how all encompassing living with not knowing is. There are so many unknowns and so little certainty, the immediate reflection is that it can feel overwhelming at times. It’s like a constant faulty rollercoaster ride that you can’t get off, occasionally it slows, in fact sometimes it stops just long enough for you to feel rational/balanced/normal again then it’s like it flies off again, throwing any sense of equilibrium out the side of the ride with you.
Kate talks about her approach to dealing with the uncertainty being to try and restore normality and return to work. I read her post nodding along, painfully aware that I have no normality to return to. My last working day was two weeks after Dad died, so that option is no longer there for me. In fact I think the uncertainty and lack of structure around my future is almost certainly contributing to my sense of disorientation. It’s not that I’m not grateful, in some ways I’m hugely relieved that I don’t have to return to work and try to get on with normality, after all I’m confident normal will never be the same now Dad has gone; I’m really very lucky to be able to start afresh in life. I’m enjoying the first holiday in five years without any concerns for what I’ll find when I get home which is really quite novel.
I do feel in a way that I’m off the fairground ride. Perhaps I’m just in that dizzy, head spinny, not quite reorientated state, still a little wobbly having just got off a ride I was stuck on for five years – everything is a little blurry, a little out of focus, a little soft around the edges. All of that said I wouldn’t have missed out on that ride at all.
Remembrance Sunday has always been an important day in the Julian family calendar. For as long as I can remember Dad was involved with the Devon Army Cadet Force, most of the year this meant regular panics on a Monday and Thursday evening as Dad hunted high and low for the twisties, part of his uniform that pulled his trousers together…this hunting was made far harder once my little sister also joined Cadets and the two of them would pinch each others.
From early October attention would change to bulling boots. I once made the mistake of ribbing Dad about why it took him so long to polish his boots and was given the full lecture and demonstration – take my word for it bulling boots is not the same as polishing shoes. Dad would spend hours and hours every afternoon for weeks polishing his boots to a shine, we’d come home from work to see him cloth in hand polishing and he’d polish until you could see your face in the reflection. Hours he’d spend doing it, after all if a job is worth doing it’s worth doing properly. Once the boots were suitably polished they’d be proudly worn, with full dress uniform and medals, down at Torquay Cenotaph on Remembrance Sunday.
Last year I took Dad down to the Torquay Cenotaph for the Remembrance Parade, at the time I couldn’t believe that he was still with us and I never would have believed that he would be around for this year’s Remembrance Sunday. My Dad was such a man of stiff upper lip, he was always so strong and I remember so clearly that the first time I ever saw Dad cry was when watching a Remembrance Service. My sister reminded me this morning that was the only time we saw Dad cry, except when our dogs were put to sleep.
Last night as Mum and I sat down to watch the Royal British Legion Festival of Remembrance Dad had a coughing fit as the National Anthem was played, clearing his throat to stand to attention I reckon. We had a lovely nurse from the hospice in staying last night, and this morning Dad is still peaceful. I’m wondering whether he’s waiting for the Last Post so we’re going to take my laptop up for the BBC service from the Cenotaph at Whitehall and leave that playing. It would be quite a fitting day for Bobby to say goodbye, if he’s ready.
One thing is for sure, we’ll never forget.
This little gem came from Bruce Springstein when he was speaking at a rally for Obama last week.
The future is rarely a tide rushing in….it’s a slow march, day after day
It has stuck with me since then, it’s really a good reflection of how life feels at the moment.
My Dad is dying from cholangiocarcinoma, bile duct cancer. He was diagnosed over five years ago, has been terminally ill since July 2010 and his health has been seriously declining in recent months. He has recently had a two week stay in the local hospice and he came home last week. This week he has really nose-dived.
I’ve been staying with my parents since the weekend and because I’m still working during the day Mum is on call in daylight hours and then at night I take the monitor. Dad has a chesty cough which means he is coughing himself awake at night, he also drops into a deep sleep and ends up making strange noises that are magnified by the monitor. Right now I am craving nothing more than a complete night’s sleep, but there wont be one tonight.
Tonight Dad is quite calm but also fed up. We’ve had a load of discussions, at all hours of night and day in the past week, and he is quite clear that this stage is tedious. He knows he’s dying, he’s grateful he isn’t in pain but he has talked about how much easier it would be to take a pill. This feels like a verrrrry long week, very drawn out and almost like we’re on a slow march to the inevitable. My sister was down for a funeral this week so Dad has seen her again and said goodbye to her and his beautiful granddaughters, he has seen my brother lots in recent weeks and to be honest I suspect he’s almost sick to the back teeth of the sight of me and mum
All of that said he still has his sense of humour. We’ve discussed funerals, memory boxes, wishes, hopes and dreams, what has been and will never be. Dad also keeps giving me advice of how to support my Mum, that is the bit that is most heart breaking for me, he is so concerned about Mum and soooo wants my Mum to move on with her life, and have a life, after he has died. He’s quite funny, he said he didn’t want any funny business, want’s a respectable mourning period, but then she must get on and enjoy her retirement.
In a way I feel that its a little unfair that my down to earth, hard working, solid and respectable parents who have spent their entire lives working hard to support our family, dont get to enjoy their retirement together. I think Dad’s biggest regret is that he didn’t get to be the Grandad he wanted to be – and a great Grandad he would have been too. The simple fact is that cancer isn’t fair, serious illness never is. Life isn’t fair, but as Dad told me last night he is happy, he’s lived a good life and he is glad to be living a good death at home.
That said, I hope this slow march comes to a halt sometime soon.
Back in the summer I wrote a post ‘Five things I wish I knew when I collected my A-Level results‘ and it got a great response; that response could have been because it was topical, because it was blunt, because it was a ‘five things’ rather than a deep ramble about one thing, or maybe just because there was something useful in it. I particularly liked the format – so I thought I’d repeat it here and share five things that in hindsight I wish I’d known when my Dad was diagnosed with bile duct cancer (cholangiocarcinoma) five years ago. I know it wont generate the same reaction as the last post but I hope that it might be useful for someone, somewhere. Disclaimer: as ever it’s written from my perspective as someone whose Dad is terminally ill, this isn’t necessarily what my Dad would think at all!
1. A cancer diagnosis changes your life, and the life of those who love you, in an instant but it’s not all doom and gloom
Cancer, the word is just so harsh in your mouth, leaves a kind of after taste. I wasn’t blogging at the time my Dad was diagnosed with cancer but if I had been I’m sure I’d have talked about the shock of it (Dad was a recently retired, fit and healthy, non-smoker, very rare drinker who had a good diet and ticked all the right boxes for a long, happy and healthy retirement) and how finite, gloomy and hard it felt. Quite simply it’s not fair. There were many emotions, inequity and anger were high on the list; there was very little to feel happy or content about – especially with such poor odds, there were no happy stories of recovery; it felt like someone had shut a big door and locked us all into a prison cell of cancer – and we were thrown into it together. That said, that technicolour experience and heightened awareness extends to the good times too; I’ve found myself appreciating the things that really matter, feeling grateful at the start of each day (when you’re not just feeling exhausted – see point two), making important decisions and really questioning whether you’re living your life in the best way you could. It has also meant that causes for celebration, a wedding, new baby, even a funeral, are really savoured, I really find myself grateful for the focus that Dad’s cancer has given us all. Life just feels that much more real, the good as well as the bad.
2. You can spend a long time living/dying (delete as you see appropriate)
My Dad has fought hard to stay alive, that’s the only way I can describe it, a long, thoughtful and determined fight. He knows that he is dying, he knows that his body is fighting itself, he also knows that we all have the greatest admiration for the way he has approached this experience – at least I hope he does. The thing I wanted to touch on though is that you can spend a long time engaged in this battle, or dance, pick which ever metaphor works for you. The cancer becomes the focus at the centre of everything and its exhausting, it’s always present for everyone, not just the person with it. I can’t remember the last time I made a decision and didn’t consider cancer within it; big decisions like quitting my job, moving where I live, disappearing on an adult gap year to find myself (two of these have not yet, and may never, come to fruition) but also more everyday ones like whether to book a holiday or weekend away; whether or not to have a drink tonight or being ever ready to jump in my car and head to their house; whether to walk to the train station or drive so my car is there if I return in a hurry etc etc etc
That level of focus, pervasive focus, is hard to live with. You don’t get much time off from it, I’m sure a lot depends on personality and approach to life but cancer has been ever present for over five years now. For many of those years it has felt like death was imminent, just lurking around the corner ready to pounce. Dad has had a number of episodes where he has recovered from very serious surgery, infections, complications, treatment side effects, there have been so many times when I thought he wouldn’t live much longer. The key learning for me has been the importance of staying connected, of trying to find down time, of recharging and in hindsight there are holidays I wish I’d taken, choices I may have made differently, I perhaps would have been more selfish if I’d known Dad would live as long as he has, but mostly I’d have stocked up on energy in the early days so I had more to draw on now.
3. Take a wallet with change for the parking machines and leave it in your glove compartment
OK, simple one this one, and it only really applies if you’re a driver, but I can’t tell you how much stress was caused arriving at hospital (sometimes because things had deteriorated, sometimes as an emergency, many times as a visitor) only to discover I didn’t have the right change for the parking meter. It took me months to actually get around to addressing this proactively and removing this stress from my life by getting myself a parking wallet! There are also other practical things that make life easier, I keep PJs and a change of clothes at my parent’s house for unanticipated overnight stays, I had a wash bag and new outfit in the boot of my car for the best part of two years – ever ready for the unexpected.
4. It’s a game of chance not science
Sometimes I still can’t quite get my head around this. Years ago if someone said cancer my thoughts and word association would have been: white coat, laboratory, science, macmillan, no hair, chemo drip, death, something like that, all quite clinical I guess (possibly due to my undeveloped and over simplified understanding of science). Now if someone says cancer things are quite different, I’ve realised that it really is a game of chance a lot of the time, one of the images would probably be a handful of dice. That’s not to denigrate the work of the amazing people who have cared for Dad and treated his cancer, but it’s to acknowledge that even with the amazing advances of science, and phenomenally dedicated, passionate and knowledgeable staff, a lot of the time there is no certainty, no science, it’s a more complex and natural equation. There are few certainties, it is impossible to know how Dad’s body will react to the treatment given, how long he has left, how many more times he can fight back from a brink – life, cancer, his treatment really is more personalised than I’d imagined, and with that it is impossible to know or find certainty. So the easiest thing is to accept that these gods and gurus, the consultants, specialist nurses, oncologists, surgeons, healthcare assistants, hospice workers, who offer so much are just mortal like the rest of us, and they can not provide certainty, so I’ve tried hard to stop seeking it.
5. People are inherently kind and good and support will come from the least expected places
Finally, it’s what it says really. My Dad’s experience of cancer and the impact it has had on my life has reassured me of one thing above all others, that people are inherently good and kind. Some people want to fix things, some want to ignore it, some will discuss it and want gory details, others will disappear from your life quicker than Usain Bolt could run 100m, some will emerge from the shadows of distant relationships, some people will find you and new friendships will forge at a really difficult time. My friends, family, twitter network, colleagues have been amazing, not all but on balance most, and the good far outweigh the bad (who aren’t actually bad they just have their own reasons for not wanting to deal with cancer/you/life/death right now).
At times knowing someone you love, who loves you unconditionally, is living with or dying from a serious illness can be overwhelming. It’s quite a challenging thing to face up to and live with. It impacts on nearly everything. I only make plans now with people who I know will understand if I break them at the last minute, I’ve been a fairly rubbish friend (not to mention girlfriend) over the last few years and the last couple of months especially. My capacity has been stretched to a point that I didn’t know it could reach without snapping. It has been, and continues to be, one of life’s biggest adventures and I am beyond grateful to all of the people who make it an exciting and uplifting adventure and not a dark, tragic, disaster movie.
If you are reading this because someone you love has just been diagnosed with cancer, or any other serious illness, know that it’s not all bad. It is unbelievably hard at times, but it is also amazingly rewarding. I wouldn’t wish cancer on anyone but I am humbled by the experience, the support and the learning that has come from this crappy situation. Find people who are positive, look for the good and remember you are never alone…and it’s perfectly OK to have bad days/weeks/months, just surround yourself with people who will walk with you until the good days come bouncing back.
I can’t quite believe I’m typing this. At the start of the year I booked Thursday off work – it would be my Dad’s 65th birthday and I booked it so that I could spend the day with Mum, reminiscing and supporting her. I was completely confident that Dad would have died months previously. It is almost five years since my Dad was diagnosed with cholangiocarcinoma, cancer of the bile duct. It was his 60th birthday celebration when we realised he was properly poorly and had turned yellow! I’ve written before of what has happened since then and earlier this year we were told Dad was terminally ill, with no treatment options left but chemotherapy. Once the palliative chemo was finished (a couple weeks ago) it was onto a new, and final phase, of symptom management.
Yet, amazingly, spurred on by the joy of being a Grandad for the second time, and inspired by the Olympics and Paralympics, Bobby is still very much alive and kicking. He isn’t as alive as he once was, he isn’t actually kicking, but he is still able to walk around and get himself up and downstairs. Dad’s scan results show that his tumour continues to grow and the cancer to spread. My parents have both separately discussed dying with me and both mention that they expect (and hope) that Dad’s death will be sudden and not a long, slow decline. The unspoken element of this is the simple fact that Dad has been on a long, painfully slow decline for the past five years but luckily it has been so slow that we’ve come to accept it without realising it or focusing on it too much.
As the paralympic ceremony closes, and we all take a moment to recognise exceptional achievements, I’m scribbling this blog post as a note to self about Bobby J’s embodiment of the paralympic motto ‘Spirit in Motion’. Dad has an amazing spirit, his own superhuman endeavours and ultimately what I consider to be a truly exceptional achievement in living with cancer, living not dying.
Pick what you’re interested in…
- RT @BiIIMurray: No matter how baddass you are, if a child hands you a plastic phone, you answer it. tweeted 3 hours ago
- Mentioned @sightsavers @macmillancancer @iCancerVirus in my blog post on #charity #fundraising wld love yr feedback georgejulian.co.uk/2013/05/18/pos… tweeted 3 hours ago
- @glittrgirl sweaty? clammy? double moist ;) tweeted 3 hours ago
- @glittrgirl mizzle? mist? damp? tweeted 3 hours ago
- @yhCommsGuy ps Think I'd prefer it if the two outside dots were ears and much bigger than the inner one ;) tweeted 4 hours ago
- @yhCommsGuy was in a recruitment agency window, guess not much call for #socmed roles (chat or conversation) in Newton Abbot!! Thanks tho. tweeted 4 hours ago
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