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

Cologne – holiday stop two

After a day ambling around Brussels we took an evening train across the border to Germany, our journey ending in Cologne. Wow, just wow.

The shared feeling we got when leaving the train station at Cologne was one of ‘….and relax’. I’m not sure whether it is the comfort of German efficiency, the slightly less chaotic sense to the station, the cold bight to the air, the beautiful Cathedral that hits you as soon as you walk out from the train station, or indeed the fact that we were inching ever further close to our end destination of Sweden, but something felt different to (and for me calmer than) Brussels.

Of course it could simply be a trick of the mind, in that now we were at a second destination, and one with snow, my brain no longer thought at a residual level that this was some sort of work trip with all the fun and games of British trains and missed deadlines.

In stark contrast to my experience in Brussels (which I fully acknowledge maybe a conclusion drawn too hastily), there was something that felt just right about Cologne. I know that I’ll return and I suspect that you could spend a decent period living or working there and still not get easily bored. There was some sort of character to it, a visceral one at that. This was only heightened when peeking out the window after a night’s sleep there had been about a foot of snow. We only had 24 hours in Cologne before one of the planned highlights of the whole trip (the sleeper train north) and so we decided to focus on the christmas festivities. We didn’t set foot inside the Cathedral or any of the museums or cultural activities, instead we ambled around the Christmas markets, soaking up the atmosphere, sampling the Glühwein and generally mooching.

We stumbled across a carol performance at the Cathedral Market by a choir called Art&Weise. Since coming back from holiday I’ve found their facebook page and website where you can get more info and listen to some samples, but I have something else to share with you – an audioboo of their performance of Halleluja. It was tingly good, in a snow covered temporary christmas market, on day two of a much needed holiday – spine tingly good.

I hope you enjoy it, the audioboo comes complete with the hustle and bustle of the sounds of people shopping, drinking and joining in. If you get the chance I’d recommend a visit next year, but for now you can listen to ‘Weinachtsmarkt Köln – Hallelujah’ on Audioboo by clicking that link. Enjoy.

Brussels – holiday stop one

It’s been a month since I’ve blogged about anything other than Dad, death or dying. So I thought it was time to share some other random experiences and some photos from my holiday.

In terms of context, I finished work shortly after Dad died (a month ago), and the overwhelming feeling was one of exhaustion. This quickly gave way to the realisation that I had a newfound freedom, a lack of responsibility, very few stressors, routines or preoccupations to worry about. We had been hoping for a holiday in October/November but once I’d resigned and knew that Dad’s health was on another decline any plans of travel were shelved. We decided to grab the opportunity of a commitment in Stockholm to build a holiday around and bought interrail tickets the same week as Dad’s funeral, which took place on a Thursday with us leaving the following Wednesday. The next few posts will document some of the highlights so far, but in a nutshell we’ve trained our way around Europe managing to sample the Eurostar, Belgium, German, Danish and Swedish trains. There’s been loads of snow, culture, christmas markets, hostels, adventures, and photos.

First stop was Brussels. I’ve wanted to travel on the Eurostar for years and it was quite exciting and completely seamless. Brussels itself was kind of meh! Don’t get me wrong it had some good bits, the Comic Strip Museum was well worth a look at and the waffle was super, but I wasn’t really feeling it. That could have been nothing to do with Brussels but it sort of added to my stress, didn’t remove it. It felt quite haphazard as a city, which is normally something I quite like, but it felt like it was missing a magical something. I suspect that Brussels would grow on me but it didn’t grab me.

There were a couple of highlights in our 24 hours, one was the restaurant we found out in the district were our hostel was and the other was a parade we stumbled across. The restaurant was really out of keeping with the area, it was a complete lucky discovery courtesy of a 4 square check in <the next time someone asks me what the point of #4sq is I’ll be offering this culinary example>. We’d been for a couple of beers and had been struck by how revolting bars are where people still smoke. One of the bars sold pot noodles as their food offering, the other peanuts – you get the culinary level we’re talking about, then out of nowhere there was this lovely French restaurant Chez Soje. We were the only customers, I don’t think Wednesday night would be their busiest but the food was amazing. If you’re ever in the area then it’s well worth a try.

The next day we went for an amble around Brussels, visiting our first Christmas market of the trip, spotting an impressive Christmas installation in the beautiful square:

Then we had to swing by the peeing man, Mannekin Pis, who was dressed as Santa – a tiny bit surreal:

and it just got a little more random as we walked past what google suggests was the St Nicolas/Sinterklaas parade – which to all intents and purposes looked like a bunch of students having a carnival and drinking in the street, while the police closed the traffic down and ensured they did so safely:

and the main man himself:

Next stop was Cologne so keep your eyes and ears peeled!

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.

Life after Bobby: Week 3

It’s three weeks since Dad died, in some ways I can hardly believe it and in some ways it seems much longer. The two weeks between his death and funeral felt quite strange, it was good to be getting on with things, to be planning, organising and arranging. It was lovely to hear so many tributes, comments and memories about Dad and to get in touch with so many people who we’ve not been in touch with for a while. Lots of people were surprised that Dad had died, even though the majority of people knew he was ill, lots of people have also commented on the fact that he never really looked ill, he never complained and they hadn’t expected the news. We have had stacks and stacks of lovely, lovely comments, of cards (Mum has over 70), flowers, phonecalls, facebook and twitter messages and general sentiments and wishes sent from across the globe. It is a real comfort to know how much Dad was loved and respected, and also to hear of his quirks and foibles too, he wasn’t a saint after all.

Dad’s funeral was really special, it went completely without a hitch, as he’d have wanted it to. The Church was packed (my irrational fear was that not many people would be there – I really needn’t have worried), the cadet gang turned up in uniform (which I reckon Dad would have loved), the service was proper without being too Holy and I’m delighted to report that Dad’ s eulogy went well. I was giving it and given that I’m quite used to public speaking I wasn’t too worried about the audience (and lots of people had reminded me that everyone was on my side at this gig), I was confident about the content (you can read it here – in one way or another I’d had long enough to think about it) but I was concerned that I would be overcome with emotion.

Seemingly so were lots of other people! Contingency plans were put in place, practices were held to identify the trigger points that got me every time (1. Mention of my sister’s best mate/ Dad’s surrogate daughter since her own Dad died about 15 years ago; 2. Mention of Dad’s partner in crime Pete; 3. Mention of my nieces), I read it out load and tweaked it till I was almost bored with it – I’ve never prepared so much for anything. On the day the preparation paid off, aside from a brief moment where I went Welsh (it’s impossible for me to say bargain without using a Welsh accent) it went completely as I’d hoped. I held it together, spoke slowly, paused for emphasis and didn’t lose it until I sat back down. Afterwards everyone was telling me how proud Dad would have been, and I knew it and felt it. He would have loved his funeral service, and he also would have loved the cream tea we had afterwards.

The other thing I’m confident Dad would have liked was the Ikea pencils and the memory postcards we had for people. The postcards were designed to capture people’s memories of him so that we can look over them, and share them in years to come with his grandchildren and others who didn’t get to meet him. The design on them was quite simple – his letter boxing stamp and his details – we had a few left for us filled out on the day but we’re hoping that some will arrive back through the post in due course. Mum has also been able to send them with copies of the Order of Service and eulogy to people who weren’t able to make it on the day, we’re hoping that by sharing their memories, they’ll get to feel more involved in some way.

After the funeral we had a cream tea in the parish hall – the scones were from Devon Scone Company and they were an absolute bargain and really lovely! Check out their website if you’re looking for scones any time soon!

The immediate aftermath of the funeral saw time spent with family and friends who had travelled down to be with us. There was lots of reminiscing and remembering and lots of time spent with my nieces who are a great distraction. The most heart breaking bit was when my Uncle turned up (actually the day before the funeral) and Libbie looks up and announces to the room it’s Grandad – luckily my sister had already anticipated that this might happen and so we were somewhat prepped for it, they do look very alike, and in a way that only two year olds do she completely accepted that it wasn’t Grandad and got on with the rest of her day.

The emotional rollercoaster didn’t end there though. That weekend I went into my office to clear it out – I was officially on leave for the two weeks after Dad died but they were my last working weeks of my job, so I needed to empty/sort/handover things. A couple of hours, four black bin bags and six years of my life – done, like that. As I jumped in my car to drive home my immediate thought was that I couldn’t wait to ring Mum and Dad to tell them I’d done it, and then it hit me, like a four tonne truck in the chest – no can do. I couldn’t ring Mum and Dad, even though my mobile still told me I could it was lying, alongside the cheap trick of my subconscious, a nasty one at that – I rang Mum instead, but that was the first real time since Dad had died that I felt I was unprepared for missing him, and the only way I can describe it was that it was a full on force.

I’ve felt it a few times since, none as full on as that. On Tuesday I got my OU exam result (72%) and overall result for the module (73%). Even though nothing about that course was about the grades for me, I was chuffed and I wanted to share that with the folks. Mum was delighted for me, and was pleased with herself too – I can’t tell you how many times she had to encourage me not to drop out of that module, it really wasn’t the best six months to be trying to study, but I’m glad I did it. I’ll blog about that another time and may even write it up for my new work blog that you can read on my new website here.

The final thing worth mentioning since Dad died is the sense of freedom. It feels incredibly odd, massively liberating and if I’m completely honest a little scary being able to plan for the future without having to worry about Dad, or Mum. I’m able to book a holiday or arrange a weekend away, to look at potential jobs and consider moving to London, or further afield, I can have a drink any evening and not worry about having to be sober to drive to the hospital/parent’s house. I hope that the timing of Dad’s death will mean that my Mum and I will both be able to find a new path in life, one where we can remember Dad and celebrate his life, but also create our own again. I’ll keep you posted on how that works out but for now I’m grabbing the opportunity by the scruff of the neck and am holiday for a couple of weeks, touring European Christmas markets and sampling international festivities. I’ll worry about 2013 and the realities of the future once I’ve recharged my batteries and got through our first Christmas without Bobby J. It’ll be different but it’ll be joyous, just as he would have wanted it.

The momentum of hope

Four years ago today I was in Virginia, USA. I was on holiday in the States on my own, staying with one of my closest friends and her kids. In the days running up to the election the energy, momentum, hope and excitement were palpable. You could feel it, get drawn into it, in fact you could almost smell it; wherever you went, on the subway, wandering the streets, in the museums, on the bus, there was an over-riding sense of optimism and potential in the air.

(cc) Photo by farmgalphotos on flickr

For someone who derives considerable personal motivation from a belief in what is possible, not just the reality one finds oneself in, this was quite some experience.

I knew the election was due to happen when I was on holiday, in fact it had influenced my decision to travel at that time, but I hadn’t expected to get so drawn into it. Which was ridiculous with hindsight, the Obama campaign was so strong, had so many unique elements, was so engaged at a grass routes level, it heavily relied on social media so I was probably more exposed to it than I was anticipating, but it also drew me in because it was so positive. So full of hope.

On election day I went for lunch with my mate and a few of her work colleagues, having grown up not really discussing religion or politics with people you didn’t know well, it was a great lunch chat. There were a mixed group and boy did they get into the conversation. Young children and no babysitters on such a momentous night meant no all nighter down the pub for us but we took up residence on Sarah’s sofa and settled down for an evening viewing the show. And what a show it was.

The day after the election I caught the subway into DC and wandered the streets, soaking up the atmosphere and drinking coffee and chatting with people. What a day, everyone I came into contact with was in a good mood, there was a heady air of optimism, of belief and hope. Like the first day of a new school term, where everyone wants to be there and there’s a strong belief  in what great things lie ahead. Strangers were wishing each other good day in the street, coffee shops were buzzing and as a tourist it was a great day, as a complete stranger who was leaving shortly I still felt a part of it. I’d witnessed this historic change and, if I’m honest, I’d got caught up in the gulf stream of hope and optimism.

Fast forward four years and Obama is looking tired. His enthusiasm is muted, no less sincere, but lets just say he’s now more older Statesman than youthful Tigger.

Not that I can talk, I’m feeling tired, bone tired and my belief in hope and optimism (as a personal or professional strategy) has been sorely tested of late. Life seems more monochrome, more challenging, more about survival than hope. I take some comfort from knowing that doing good isn’t easy and finding your path in life is a journey, not a single simple decision; it’s more complicated than simply ticking a box on a ballot sheet.

I read an excellent blog post from @dcurtis that grabbed my attention yesterday, you can read it here, but this struck a chord for me:

…The truth is that, in order to make progress, you need to physically and mentally fight against the momentum of ordinary events. The default state of any new idea is failure. It’s the execution–the fight against inertia–that matters. You have to remember to go against your instinct, to confront the ordinary, and to put up a fight.

As America goes to the polls, I am settling down for my third night at my parent’s house with the Bobby monitor, not knowing what might happen, politically or personally.

The soup of anticipation, anxiety and hope is bubbling and while there are no guarantees of what the next four years hold, I for one am digging deep to recapture the potential that shone so brightly four years ago, to remember and relive the hope that was, to fight against the momentum of ordinary and unearth something special. I hope America does too.

Living on quicksand

Earlier this week I had the absolute pleasure of attending #innopints4 in Totnes. This was the first night off, and night out, I’d had in some time. During the evening I made a throw away comment to @phillirose about not being able to commit to meeting up on a particular day, because I wasn’t sure of my plans for the next while. Later on that evening when checking out how people had found it I noticed this tweet from @oerthepond

I was a bit confused, we were sat at the same table in the same pub and Kathryn hadn’t asked what I meant by the comment, but maybe the opportunity didn’t arise or she didn’t feel comfortable to. I read a certain incredulous tone in that tweet, maybe it was just the hmmm, maybe it was the question mark, maybe it wasn’t there at all, but I thought I’d use this post as an opportunity to explain further.

I can’t actually remember the last time I confidently planned something and didn’t allow a thought to flash into my mind that it might not happen for some reason. I can’t remember the last time I decided I would go away for a weekend or book a holiday or arrange a night out, without considering the consequences for other people if I had to bail at the last minute. My Dad has been living with cancer for four years and ten months now. He has been told he has months to live on five occasions, he has had a terminal diagnosis for the past couple of months and has been receiving palliative chemotherapy since April, the absolute last treatment they can give him to try and keep him alive, or dying well. This week his consultant agreed to continue his chemo for two more courses (6 weeks), his scan results suggest that it seems to be stopping his tumour from bleeding as much and none of them have got any larger, it also discovered a blood clot that they’d normally treat with warfarin but can’t given his other meds/blood loss they’ll just leave it and hope it doesn’t cause any problems. The hope is that he will live long enough to meet his second grandchild that my sister is expecting in six weeks. Knowing what my Dad is like with a target he may even manage that, I hope for him he does, but I wouldn’t be betting on it myself.

In an old post I tried to explain the cancer rollercoaster:

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…Then of course there is a continual, constant balancing act of making the right call around priorities in life. The hard thing about knowing someone you love is terminally ill is that it provides a lens of constant reflection, every decision (if you allow it) could take on a significance of monumental proportions. Well maybe I’m being a little dramatic, perhaps not every decision, cocopops or muesli for breakfast shouldn’t have a massive effect, but knowing whether to visit tonight or wait until tomorrow could.

Of late life has got even more complicated, my 94 year old grandfather is in hospital. Mogs has been ill, insignificant an issue you might think, but trust me trying to put ear drops in a cat single handedly, or being around regularly to give him five pills twice a day, alongside the five trips to the vet, has been a bit of a pressure. Work is work, which means it is invariably busy and there are never enough hours in the day. In addition to that Dad’s health is very up and down, he has had almost as many emergency admissions since he started palliative chemo as he has routine trips to get the chemo, he also still has to have regular blood transfusions and his picc line flushing.

The reality is that I do feel like most of the time I’m living on quicksand. It seems that the minute I take one step forward, something more happens that drags me down or back. I am beginning to feel exhausted with the uncertainty of life, and worse still I’m starting to feel it rubbing off on other people in my life, rarely in a helpful manner. It is incredibly debilitating not being able to plan or consider a future longer than a few hours away. The simple fact is that I can not plan more than one day at a time, sometimes more than a couple hours at a time – of course life isn’t that simple to live in such a way, so I’m left with one of two options, plan and risk the plan being disrupted, or don’t plan and don’t worry about letting anyone down. I find myself juggling those strategies all the time, at work, in my life, with friends, and certainly I don’t really feel like I have a life blueprint for anything past the immediate future.

What that means in a literal fashion is that I’m wary of making long term commitments, I’m increasingly wary of making short term commitments too. I’m meant to be at my OU Residential School next week and only booked my train tickets today – sacrificing affordable travel for the security of not booking tickets I then wouldn’t get to use. I have no holidays planned, although I have got a weekend planned in London in a couple weeks thanks to the awesomeness of FB who organised it, and I do have two days booked off work for one of my closest friend’s weddings in August. That said I’m sat looking at the hen night invite and toying with going or not – I don’t want to let them down, I don’t want to promise to go and then have to cancel at the last minute, that said it could be the dressing up as a flight attendant that is putting me off committing to that decision too!

Someone said to me today that you couldn’t make my life up at the moment, if you wrote it as a script for a soap opera you’d be told it was too dramatic and too unrealistic, no-one would believe it would happen like this. What that means of course is that when I make a commitment I have to trust that the people I’m making it with don’t mind if I cancel, or that they have an understanding of the pressure that I am (and by association some of the closest people to me are) under all the time. The great thing about #innopints is that @martinhowitt @carlhaggerty @fergusbisset @phillirose and @markbigsw are all such brilliantly generous and empathic people that while the last thing in the world I’d have wanted to do was cancel, I felt safe that they’d understand if I had to.

Support like that isn’t always easy to come by, this week they were my lifeline in the quicksand. Thank you lovely people.

Jubilation weekend

I was just looking at my blog and realising how full it is of cancer, death and dying. Now sure I’m cool with talking about that stuff but it does give (even me) the impression that my life must be horrendously difficult. That’s not to say it isn’t at times, but it is only at times, some of the time I get to enjoy normal stuff as well and in the past six weeks despite my Dad’s and my Grandad’s health declining quite significantly I also got a long weekend away for the Jubilations (nice of Her Maj to give us an extra day off and even nicer to move it to that weekend – my birthday was the following Wednesday).

I thought I’d share a few of my favourite photos from that weekend, as a reminder that life is sort of normal too, in amongst all the doom and gloom. There was a lot of food:

a lot of Baby Jack:

and a lot of Ruby:

I’ll not share photos of the impact of having Jack (and his 24 hour stomach bug) with us, suffice to say about three of the eight adults managed a crash diet that weekend and it wasn’t due to the alcohol, even though there was quite a lot of that also.

It is really hard to take time away when you don’t know what will happen at any moment, but it was also a perfect tonic to quite a hectic few weeks. The only downside was that I couldn’t visit Dad for a week, until I was completely sure I was short of Jack’s bugs, not that in itself that was a problem either because it probably just added to my sense of having a break. I just wish I could give my Mum the chance to have that break, as we come into Carers Week I’m more aware than ever of the toll that Dad’s illness and my Grandparent’s increasing frailty is having on her. I’m off to visit her the family this afternoon and will again encourage her to try and take some time out. It’s absolutely essential.

The cancer rollercoaster: living with the unknown

April has felt like a long month, the reality of course is that is all perception, it’s actually only 30 days and I’ve been away for a significant chunk of it, which has perhaps stretched it’s length in my mind. I blogged at the start of the month about Dad’s latest treatment (blood transfusions and chemotherapy) for managing his cancer. At the time I expressed my concern that I was travelling a bit in April and would be away from home if anything happened. The professionals had predicted that if Dad was likely to have an adverse reaction to his chemotherapy it would happen over Easter weekend – sure enough they were right with the expected response, and almost precise on the timings, Easter came and went in an unremarkable fashion and Dad was admitted to our local hospital on the Tuesday that followed. He had an infection, it wasn’t clear what sort or how to manage it, but he was kept in isolation and looked after until he was stabilised.

The weekend that followed I had the absolute pleasure of a weekend in Bonny Scotland. Great idea, lonnnng way. Up to Scotland on the Friday and back on the Monday. I visited Dad on the Thursday evening and he was crystal clear that I had to go, and that my life couldn’t be put on hold for his. He was sent home that weekend and I had a great time away, helped in some part due to my complete lack of mobile signal so I didn’t keep checking my phone for missed calls or texts, which was a welcome relief in itself.

The following week I was working away (at ADASS Spring Seminar) from the Wednesday – Friday. Dad had already had his second course of chemo cancelled given his initial reaction, but seemed to be picking up when I saw him that Tuesday evening. Dad and Mum had an appointment with his oncologist (only the second scheduled appointment I’ve missed since Dad was diagnosed over 4.5 years ago) on the Thursday of that week and he surpassed their expectations again – he appeared to be making a remarkable recovery, his internal bleed and blood loss seemed to have slowed down and he was feeling a lot better. As Mum described it this evening, they had a taste of normality – he was even able to take their dog for a walk on the beach, the first time he has been well enough to do that in months.

The weekend that followed I flew to Ireland for a conference (#EIPIreland) for three days and then stayed on in Ireland for a friend’s wedding this last weekend. On Thursday I got the text I’d been dreading from Mum that said Dad was being admitted to hospital by ambulance for transfusion asap. I’ll spare you the details, mostly because they’re completely inconclusive, but it looks like Dad’s body is struggling to cope – what’s not clear is whether that’s because he was too anaemic for the chemo, or whether it’s a result of the chemo, or indeed whether it’s because his body is slowly starting to shut down, or given Dad’s unique trajectory with this illness to date whether it’s something altogether different.

Having had a week away, I went straight to the hospital on my return yesterday (incredibly grateful that I was back on home soil, Dad hadn’t died while I was away and that my brother had come down to support Mum in my absence) and was gob smacked by how exhausted both my parents looked. It was only a week since they were walking the dog on the beach in the sun – not that you’d have thought as much if you’d seen them. I felt a huge responsibility, not that I could have done anything differently, but I felt like I’d left them to deal with things, and they looked like they’d paid the price for that.

Just about the only thing that is clear this evening is that the bed Dad had in the local hospital was needed for someone else, he was growing increasingly agitated and exhausted with trying to understand the system/decisions/information, and he was being discharged irrespective of the knowns or unknowns. 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.

There are loads of immediate questions we have, the most immediate include whether Dad will need to stay on the new drugs he’s been given in hospital this time or change again; will he have a PICC line inserted after 11 failed attempts to insert a cannula at the weekend; will his chemo be continued; how long can he cope with the constant intervention; how long can the NHS afford to provide intervention/blood/chemo; whose advice should we take and/0r who should we ask questions of. That may give you a smidgen of a sense of the level of not known.

Then of course there is a continual, constant balancing act of making the right call around priorities in life. The hard thing about knowing someone you love is terminally ill is that it provides a lens of constant reflection, every decision (if you allow it) could take on a significance of monumental proportions. Well maybe I’m being a little dramatic, perhaps not every decision, cocopops or muesli for breakfast shouldn’t have a massive effect, but knowing whether to visit tonight or wait until tomorrow could.

My colleagues have been constantly supportive, encouraging me to take what time I need, the reality is that I don’t know. If I take time now is it an indulgence, will it scare Dad into thinking I think he’s dying (and put him in a negative mental place that suggests I don’t believe he’ll live much longer), will it just put other elements of my life under more pressure in the long run, will it just add to the pressure that my folks are already under, if there is one thing I have learnt it’s that multiple people hanging around and waiting to understand the vagaries of the NHS is not a good use of their time and definitely puts your already strained relationships under more pressure.

Likewise people have offered to help in any way they can, the reality is I don’t want to call on people’s offers of support now unless I really need it because I don’t know if we’ll need it more later, it’s a bit like the boy who cried wolf I suppose – it’s impossible to know what the future holds so you just have to juggle the unknown and hope you make the right call. I’m not really sure where I’m going with this post, in fact I might not even publish it because it feels like a lot of rant with not much purpose, an almost indulgence (the worst kind of blog post). That said if this goes any small way to share the experience with anyone else then maybe that’s no bad thing. It’s really exhausting constantly living with an awareness of the unknown…the huge irony of cause is that we all live in this existence every day, even if we don’t recognise or realise it.

The art of doing nothing

This weekend I intentionally made no plans, relishing the prospect of four whole days without a single commitment.

The one exception to this is that I promised Mum and Dad that I would spend the night with them on Saturday. Dad started chemo on Wednesday and we’d been warned that this weekend would be a critical time for him with a significant risk of him developing neutropenic sepsis. Mum wanted to go to some Easter vigil service thing at church on Easter Sunday at hideous o’clock (like seriously, 5.30am or something like that). Anyhow, I promised to stay the night so she could a) get some sleep knowing there was someone else there if Dad got ill and b) go to church in the morning without worrying about Dad.

The weekend started with a gig, I went to see Ruarri Joseph play at The Cavern in Exeter on Thursday night and a few bevvies were consumed – I’d definitely recommend seeing him if you get the chance. My brother rang on Friday morning to say that he was popping in to visit Mum and Dad if I wanted to catch up with him. He lives a couple hours away and a part from a couple weekends ago when Dad was really ill and he came down to visit him in hospital, I’ve not seen him in a while, and hadn’t seen his girlfriend since last year. So Friday started with a lie in, breakfast at Occombe Farm, and then a trip over to the folks house to see the family. I also made an effort to read my latest book and engage with the twittersphere a little. I’m reading Thinking, Fast and Slow by Daniel Kahneman, you can see what I shared and my notes here.

When I was at the folks house on Friday my Gran came in with her freshly baked Easter biscuits. She’s 92 and had bothered to make them, which shamed me into action, so I started Saturday by baking. I made two batches of Easter biccies for sharing with friends and family.

I then headed over to Totnes to do some shopping, grab some lunch, read some more of my book and generally chill out. It was the first time in months I’d felt relaxed enough at the weekend to actually do something just for myself, to not spend time being concerned I was ‘wasting’ time that I could otherwise spend working. I seem to have got into a weird loop of late where weekends feel like a good opportunity to catch up on what I hadn’t managed to get done during the week, Sunday’s particularly have their own pressure where the clock is ticking before the week starts. This Saturday felt different, in fact I *loved* the fact that it was already the second day of the weekend but there wasn’t even an inkling of that pressure, I was aware of it, but not in a bad way. Saturday night I headed over to the folks house and really enjoyed spending time with Mum and Dad – especially because Dad wasn’t too poorly at all.

In spite of that I had a rubbish night’s sleep on Saturday and spent Sunday morning just chilling out with Dad, reading my book, painting my nails (green – I knew you wanted to know) and chatting a bit with the twittersphere. Sunday afternoon I spent an hour with my grandfolks (hearing about their experiences of domiciliary care -a post for another time), and visited my best mate on my way home and then the pressure started to build, at this point I’d had two whole days off and done nothing, made  no progress, answered no emails, achieved nothing – wasted the weekend. So I embraced that sense and decided to do my ironing! Ultimate procrastination technique for me, in fact the depths of procrastination when I get the iron out. Sunday evening I cooked a roast dinner and watched TV.

So, to the final day of this gloriously long weekend. I had meant to set an alarm for this morning, but didn’t. So I slept for most of Monday. When I eventually got up I went out to buy cat food and that was it, the sole active achievement for the day. I also made a couple of phonecalls, read a few newspaper articles, talked on twitter a bit, while all the time avoiding the by now screaming nagging doubt telling me I was ‘wasting’ the weekend and missing the chance to get some work done before work tomorrow.

So there we have it, a four day weekend and not a single piece of work done. In fact not very much done at all. It’s not exactly been easy though, well it was to start with, but the pressure has been building the last two days. I decided to write this blog post because a few people expressed similar feelings the past few days.

In fact Martin H summed it up in his tweet earlier:

@GeorgeJulian chill! #youreworthit

— Martin Howitt (@MartinHowitt) April 9, 2012

— Martin Howitt (@MartinHowitt) April 9, 2012

Martin got me thinking. What is it about so many of us that we judge our worth or achievement by how much we do? Are we becoming obsessed with doing? Does it come from some sort of need to measure progress? Is it about valuing time, or feeling confident that we’ve spent our time in the best way possible? Is it purely a sense of needing to do because most of these interactions happen on twitter and therefore we feel some additional pressure to share what we are doing?

Maybe some of this rings true, maybe indeed none of it does.

I know that I’m acutely aware of the value of time at the moment, and the need to ensure that what time I do have is spent wisely. To that end this weekend I’m glad I didn’t do very much, I’m glad that I had four days with no commitments that enabled me to respond flexibly, to spend so much time with family and not feel like I was passing up other opportunities.

That said, if I’m honest I’m not sat here with a proud sense of achievement, I’ve not tackled the mountain of work tasks I was relishing the chance to get on with, I’ve not crossed anything significant off my own to do list, I’ve not been for a run or done any exercise, however, I do feel slightly more ready for the week ahead and for whatever life chooses to throw at me. I’m also more determined than I have been in a long while that I’m going to mark at least one weekend a month out of my calendar and judge its success by how little I get done.

I’m going to work at developing an anti-achievement sentiment, where doing nothing, sleeping lots, maybe not taking my PJs off for a whole day are seen as badges of honour rather than tell-tale signs of slovenly indulgence. Who else is up for this challenge? Would be interested in your thoughts, whether anyone else fancies practising the art of doing nothing, and indeed any strategies you may have for avoiding the nagging doubts about wasting time at the weekend (or indeed to hear if I am the only person on the planet who feels that way). As ever, all comments really welcome. Thanks.