My 35 thousandth tweet

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:

The title and tag line to the article are:

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.

Life after Bobby: the first six months

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.

Compassion in Healthcare at Torbay Hospital

Last month Mum mentioned she’d seen a talk advertised in the library, it was being held at our local hospital and was being given by Sarah Tobin. It was on a Monday evening, a day I worked at home, Mum was curious and thought it might be of interest to me from a work perspective. So we agreed we’d go and I did a quick google to find some info and came across this. The event was the first attempt at a Health Science Cafe event being held at the hospital and most importantly they’d be free parking, a small but important manner. If you were to play a word association game with anyone who has had anything more than casual use of the health service I’m confident it wouldn’t take long before they mentioned parking – finding a space only being half the battle. Anyhow, I digress, this was an early evening event with free parking and Sarah Tobin, what was not to like.

Who is this Sarah I hear you ask? Sarah was one of the many professionals who provided support for my Dad, and all of his family, when he was first diagnosed and through his treatment for bile duct cancer. Specialist nurses are worth their wait in gold, they have intricate knowledge of what you are facing, have always made themselves readily available, always *always* return your phonecall if you have to make one, have the ability to unlock doors and generally give a sense of confidence in a quite daunting experience. I guess you could think of them as nursing sherpas who guide you through it all….we were lucky to have the support of several different ones and they all helped enormously.

Last Monday we arrived at Torbay Hospital, parked up and I checked in on Foursquare and was delighted to see I’d not been to the hospital in nearly six months. Dad died last November and until then I think I had visited at least every four months and in the latter stages of his life far more frequently, with a large number of visits as an emergency admission. The last time I’d been at the hospital was to drop Mum up to deliver thank you tins of chocolates to the staff who had cared for Dad. I still wasn’t really sure what to expect but off we went.

We were greeted by Helen, the Trust librarian who came up with the idea of the Health Science Cafe at Torbay. She had mentioned in the press release linked above that she felt it was important for people to have the chance to visit the hospital site for occasions other than just to meet medical need. One of my take home thoughts from the evening was how good it had been for me to return to the hospital that has played such a significant role in our lives over the last five years, with a positive reason. To drive up without the nagging doubts, the butterflies, the anxiety, the stress. To be honest it felt a little odd, after we’d parked up I had to remind myself that there was nothing to worry about!

The talk was very informal, there were about ten of us there although I think most people were previously associated with the hospital in some formal way. Sarah introduced herself, she now works 0.5 as a specialist nurse and 0.5 in teaching and education. She told us a little of her own personal experience, and indeed what fuels her interest in this area, and about her masters that focused on whether you can teach compassion and her current PhD studies in the same area.

She went on to talk about a number of key approaches adopted within SDHT (South Devon Healthcare Trust) to support work on compassion. These included:

Patient storytelling – this was introduced as a benefit to patients, where they are given the opportunity to share their experience. Their experience is tape recorded, transcribed and then shared with teams in a facilitated discussion designed to identify future improvements.

Observations in care – after a day long training session people are given 2o minutes to observe a ward/healthcare experience. Observers work in pairs, they note down what they see, hear and smell, purely as objective observations with no reasoning or judgement attached to them. They compare and contrast their notes after 20 mins and feed back to the staff members they have observed.

Schwartz rounds – this approach developed in the US at The Schwartz Centre and piloted in the UK by the Kings Fund provide a monthly, one-hour session for hospital staff to discuss difficult emotional and social issues arising from patient care.

Other approaches discussed included the development of a Leadership Programme for nurse leaders and ward managers, the introduction of the Friends and Family test, and Jeremy Hunt’s new requirement that nurses work for a year as healthcare assistants before training. The discussion was wider than just the steps taken to increase compassion, we also discussed the issue of complaints (90% focus on communication in some way), the changing shape of training over the years to include a greater focus on communication skills, the balance of positive to negative feedback (3:1), pride in nursing, how to gather feedback to get a hospital wide picture, the number of patients in hospital and their reasons for being there (80% of the surgery carried out at Torbay is now done as day surgery – this leads to changing methods of patient care, changing demographic of inpatients and so on).

Media Impact Mention was also made of the media and the negative expectations that many people have of hospital care, before experiencing it for themselves or those they care for. Initial analysis of the Friends and Family test feedback at Torbay commonly reports ‘it was loads better than I was expecting’. The local paper had been invited to advertise the Health Science Cafe and run a story on it, they had declined the opportunity. I can’t help but feel bad news sells more newspapers than good! Maybe they’ll get behind the later events, perhaps even send a reporter along to share with a wider audience.

Our discussion of the impact of the media also extended as far as two fly on the wall documentaries currently showing on TV, 24 Hours in A&E filmed at King’s College Hospital now in it’s third series, and Keeping Britain Alive: the NHS in a day filmed across the NHS on Thursday 18 October. I have a real interest in these documentaries, part morbid fascination with something new, part as an example of human behaviour and within that the compassion captured, part also as a reminder of how lucky we are to have a national health service.

While I imagine only certain people are interested in these programmes (best viewing figures for an episode of 24hours in A&E just top 3million people, Eastenders and Coronation Street routinely get double or three times that), that is still a large pool of people who do appear interested in this user generated content. One Born Every Minute, another Channel 4 documentary series now in it’s fourth series is set in an NHS Maternity Ward and clocks viewing figures of almost 5million; it’s not clear what exactly it is that people are interested in but I’d hazard a guess that it is part real-life stories that could as easily feature us and our family members as players that attracts them. Thinking about the three approaches Sarah had discussed one of the common features of them is reflected in this documentary approach, they all give a real-life focus and focus on the experience (of patients or staff) and allow for reflection on that experience as a prompt to identifying learning points, or building resilience, and also in humanising people.

This blog post was designed to share the experience a little more widely, partly because I was left with quite a few ideas and questions I’d like to think of further, so your own thoughts and experiences are very welcome. A lot of my thoughts were about how it’s possible to create a common team/organisation wide focus that focuses on an individual’s experience of compassion; how you define, or develop a shared definition of compassion; how you keep learning and reflections alive and tangible; whether there is enough focus on positive feedback as well as negative; how important and value laden compassion is – perspective being key; whether certain environmental circumstances are likely to reduce, or increase, compassion; and whether greater focus on staff members’s as individual’s could create behaviours among patients that increase their own chance of being treated compassionately (and vice versa)! What do you think?

A case of mistaken identity? A matter of life and death

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.

Life after Bobby: the first 100 days

It’s 101 days since Dad died today, I’d been thinking about this (non)-anniversary all week and was fully aware of it yesterday but couldn’t bring myself to concentrate long enough to write this post then. I’m confident Dad would appreciate the quirk of it being 101 days anyhow. So I’m going to keep this short (I tried…it didn’t work, sorry) but share some of my reflections on life after Bobby. I did a few posts in the immediate weeks following Dad’s death, one after a month and another after two months, but I’m hoping the passage of time will make this one slightly more considered and reflective.

Missing him

It seems that the normal timescales for grief and grieving suggest that we should all be a little raw still, given how soon it is since Dad died. I’m not claiming I’m out the woods, but mostly I feel like I’m doing ok. The grief is there but it’s almost like a washed pebble, it’s like a lump that’s present around and within me, but it’s by no means raw and jagged. I wonder if part of that is because we had so long to come to terms with Dad’s illness, I’m confident part was due to the amazing support from the Rowcroft Hospice team when he was dying – it was almost like our grieving started when they arrived in with us, and they were phenomenal in that regard.

Don’t get me wrong, I do miss Dad, there are loads of occasions where I’m stopped in my tracks at my sense of missing him. I’ve had an almost visceral response on a handful of occasions, the most recent was when I was strolling around the Vasa Museum and I was thinking how much Dad would like it, it hit me like a ten foot wave, Dad would *have* liked it; past tense. I thought I was alright with that until I turned to remark aloud Dad would have liked this and the words stuck in the back of my throat, hard to form without an extra gulp of air or two.

On the plus side I’ve learnt that it is possible for anyone, even me, to cry Cheryl Cole tears. You know what I mean, simple beautiful diamond tears cascading down a cheek and deftly caught in a tissue, as opposed to the full on, red bloated face, tear avalanche accompanied by full on shoulder shakes that was the hallmark of my grief in the very early days. It’s not so much a learnt behaviour, more a necessity. If you find yourself thinking of someone you’re missing on public transport (I’ve learnt I do a lot of my thinking on trains) the you can’t afford to make a spectacle of yourself!

Moving on

When Dad died I changed my facebook profile pic to one of him holding me as a baby. It was in some way a marker and virtual acknowledgement of the role he’d played in my upbringing, but on a very factual level it also served as an alert. Most of my friends knew Dad had been ill for some time but I hadn’t actually told many he was dying so having a new avatar meant people looked and very soon found out that Dad had died – this cut back on my need to contact people and let them know individually. In addition Dad had an epic beard which was an awesome talking point. Here, take a look it was this photo:

The avatar was also a bit of a comfort for me over the past 100 days. Every time I looked at it I’d smile at Dad’s beard as a starter, but also at the memory of his chest! I spent hours looking at his chest the week that he died, he’d take every opportunity to get his chest out in the sun, famously stringing an extension line into the garden so he could iron in his shorts in the summer (once a matelot always a matelot). One of the advantages of him being at home was that he didn’t have to wear full on PJs as he would have felt obliged to do in hospital, so that chest is scorched in my memory, in a good way.

What has that got to do with moving on. Well this weekend, encouraged by a throw away comment on twitter and a new hair do, I changed my avatar back to a photo of me. I’d been wanting a reason to do it for a wee while, I didn’t want to change it too soon and I was worried that I’d feel like I was erasing Dad in some way or moving on to quickly, but hell it’s what he’d have wanted and my barnet won’t look this good for long, so it’s back to me!

Remembering reality

One of the joys of Dad’s death and dying has been the excuse to reminisce and share stories. There have been lots of words about Dad over the past 100 days and I’ve caught myself occasionally glossing over the bad bits and just focusing on the good, turning Dad into an almost virtual saint! Anyone who knew my Dad would laugh at that, he was all manner of goodness and had a true heart of gold and would give anyone his last penny, but he wasn’t no saint. Catching up with Mum this weekend it felt good to acknowledge as much, to discuss the good but also some of the more irritating or less favourable bits.

The most striking bit for me is the sense of freedom I feel now Dad has died. It’s not that I actually think Dad would have judged me, all he ever asked was for us to be happy, and yet in some way we didn’t often see the world in the same way. We were quite different people and I maybe it’s completely natural for all children to want to please their parents, but it feels a relief to know there is only one left to have to please! I guess this is wrapped up with a growing realisation of how full-on and demanding Dad’s illness was at times over the past five or six years, not to mention how demanding my relationship with work had grown (I quit my job in September, just before Dad’s health seriously declined and was working my notice period when he died).

It certainly feels good to be free of some of those residual pressures, and it similarly feels good to speak freely of them.

Getting back on the social media donkey

When Dad was dying I received a lot of support via social media, it helped me no end to know that people hadn’t forgotten about me, despite my absence. I lurked occasionally, ignored it a lot and really questioned how futile a lot of the interactions were once I returned. It felt like everyone was moaning on and being negative, and the last thing I needed was negativity in my life. I worked hard to stay patient with it, to remember that it’s not all about me, to respond to the virtual invitations and connections offered, and to force myself back into a space that has provided me such support over the past few years.

I keep using the analogy of learning to swim with social media – you can’t really ever understand it, get it, or do it until you jump into the water. You can read, you can watch, you can study, you can question, but until you get in the water you won’t fully experience what it has to offer. When Dad was dying I spent a lot of time at the edge of the virtual pool and it took an immense effort to trust myself to dive back in and commit to it, it would have been easier to just stay close to the edge, or to give it a little time but then walk away, after all a lot of the interaction was so futile.

Yet it’s not, it might look like it is from the edge, but the very real and genuine connections and support I’ve received from a number of different people has reignited the value of social media for me, and I’m back there swimming lengths with the best of them….now if only that would translate to an actual swimming bath

Future

Finally I wanted to reflect on the future. I’ve been really keen to raise awareness of the fantastic support we received from our local hospice, Rowcroft, and particularly their Hospice at Home service. To that end an extract from one of my blog posts features in their latest newsletter and on their website. I hope that by sharing our experience people will realise what is available to them, will find comfort and hope for what may lay ahead for them, and members of the local community may even dig into their pockets and provide some monetary support.

I’ve also been taking the time after Dad’s death to consider my own future and what it might look like. I’ve created a Pinterest board titled Work Less, Live More that includes my quasi bucket/to-do list. Take a look and let me know if you want to join me on any of the activities and please do feel free to suggest others.

101 days without Dad has sharpened my focus and enabled me to address issues of balance in my life. I’ve not felt as optimistic about life, or as creative or energised for a long time. Life will never be the same, but I have no intention of ‘getting over it’, rather living with his memory and tuning in occasionally to his voice in my ear, encouraging me to stretch myself, take risks and enjoy life to the full. I’m finally learning to Let it Go.

Not just a statistic – World Cancer Day

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.

NB

Read more about my Dad in his eulogy.

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.

Life after Bobby: Month 2

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 time is limited

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

What to buy a dying man for Christmas?

This is the first year I’ve not faced this dilemma as my amazing Dad passed away last month (you can read his eulogy here if you’re interested) but I’ve noticed that a post I wrote a couple years ago What do you buy a dying man for his birthday? has had a lot of interest recently and so I thought I’d up date it and offer some ideas.

If you are reading this because you have to buy a present for someone who is dying, please accept my sympathies. If you’re reading it because you are trying to buy for a man who doesn’t want anything, please accept my sympathies. In fact if you’re reading this for any reason that involves present buying, please accept my sympathies. I’m not a natural shopper, I don’t find buying pressies for the men in my life particularly easy, never have done. The fact that someone you love is dying is hard to face, Christmas present shopping (at least before I took the amazon approach) is just as hard. Christmas present buying for someone who is dying is doubly hard, at least.

Don’t panic though, I have a couple of thoughts and some practical advice and ideas to offer if you’re interested….

Firstly, it really doesn’t matter. I know it means a lot to you, I know you care (otherwise why are you reading this), but it’s for those reasons that it doesn’t really matter what you get or do. In the big scheme of things exchanging gifts is either something done out of duty, or something that you do to show you care….so don’t focus so much on the ‘what should I get’, and don’t over think it. I’m reasonably confident that the person you are buying for will be flattered that you bothered to think of them at all.

Secondly, the things that most people value are the things that you can’t buy, or that take thought but not too much money. Spending time together, compiling photo albums, reminiscing, being on the end of a phone or email. My Dad took as much enjoyment from a hand crafted picture from my niece as he would have from any expensive present.

OK, I get it, this isn’t helping, you know all this but what present should you buy?

I think there are a range of options and only you will know what works for your person. Work your way through these categories and see if anything grabs ya:

1. What they like – just ignore the fact they’re dying I’m not being sarcastic. My Dad was always hard to buy for because he never really bothered with possessions, so this dilemma was heightened by his terminal diagnosis but it wasn’t entirely new. So on the occasions we carried on as normal we brought him sweets, books, slippers and socks. If they like a flutter think of lottery tickets, scratch cards, or a bet. After all Christmas is still Christmas.

2. Make something This is a little in keeping with the earlier thoughts. Buying a box of chocolate brownies from Tesco may not be up there on the top of the thoughtful present list, but handmade double chocolate brownies in a nice box, tied with a ribbon, goes a long way. Depending on the situation the person you’re buying for may not be able to eat, but making anything is a winner. How about a collage of photos, pictures and drawings.

3. Gather memories We all know we’re dying if we stop to think about it long enough, and I think it’s a human instinct to want to preserve memories and history. My Dad got very interested in ancestry in the last year of his life, strangely he was focusing on my Gran’s family rather than his own, but he did seem to get very into it. Perhaps you could consider a present along that line, or make up a history book with blank spaces for the person to fill in and leave behind. My Dad recorded some of his earliest memories, from before he met Mum, and they’ve been great to read….he wasn’t an academic man, and sure there are spelling mistakes and the grammar is rusty, but it is sooo Dad, and is a lovely record to have.

4. Give connection This is a really powerful one if you can pull it off. I’m not sure whether it was last Christmas or the one before, but my brother and his girlfriend bought my parents a wifi photo frame. My Mum wasn’t sure about it at the time, and it was a hassle because brother had to arrange for them to get wifi fitted to use it. That said, if I could buy one present only for someone in Dad’s situation again, it would be to get one. It brought so much joy to my parents as each of us kids sent them photos from wherever we were in the world, it was a talking point and a memory box all in one, and by the time Dad was unable to leave his bed it was a complete lifeline – I wrote about it here. You don’t need technology to do it either, there are numerous postcard apps now that allow you to send your photos for printing as postcards, with a message, to arrive a few days later – a little less instant, but equally well received when we tried them out on holiday.

5. Entertainment I’m not sure that this would work for everyone, but if there is one constant with healthcare and illness, it’s time spent waiting. So any presents that fill that gap are worthwhile – if your person is a reader then you could go for books, book vouchers, a kindle (they’re much easier to hold for long periods than a heavy book and the charge lasts for ages); if they like music how about an ipod, or a CD, or an audiobook; if they are likely to remain in one place you can think bigger/longer term/less portable – puzzles and a bed board, model kits, crafting – whatever they like, but beware fine motor skills; you could also go for films or DVDs, but if they’re in a shared space don’t forget the headphones that make it more bearable for everyone else!

6. Help others There are numerous schemes around nowadays that allow you to donate to charity, or gift a practical present/tool/piece of equipment to someone who needs it more. You can sponsor children, adopt an animal, or lend money to a new enterprise. Any of these gifts put the focus on the longer term which may well be welcomed by someone facing the end of their life. I’m not sure as I didn’t get one of these for Dad, but I can see that some people might like it.

7. Give blood Finally, and arguably more importantly, there is something that you can get them at no cost except your own time. Something that could benefit them, and many others. You could give blood. My Dad received numerous transfusions through the course of his illness. In his last few months, he was kept alive and enabled a good death with the support of 44 strangers who donated the 44 units of blood that he received. If you really want to give something amazing this Christmas, click this link and register to donate blood, you could change someones life forever. If you’re not in the UK then try the American Red Cross site for more info.

I’ll end my returning to my earlier point, it really doesn’t matter. Spend time, let the person know you care, reassure them that you’ll be around to support their friends and family when they’re gone, remember them, take lots of photos (I gave up avoiding the camera once we knew Dad was terminally ill and I’m so glad that we all feature in photos and I wasn’t always hiding behind the lens), carry on as normal, acknowledge life isn’t normal, just be yourself and do your best….and remember to enjoy Christmas. I hope you find the gift you’re looking for and have a happy and healthy festive season.

Life after Bobby: Month 1

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.