A couple months ago I blogged some feedback about the new First Great Western online booking system. I also blogged about one particular member of their staff who I felt had dealt with me, and my fellow tweeters, particularly well – Ollie. Since then I have received lots of tweets and comments from fellow train users, I’ve learnt about the background of the booking system, had it inferred that I’m a simpleton, moron and indeed zombie, and also been promised a new upgrade to the system in April that will make it easier. Check out the comments on the first post for more of the picture.
So imagine my frustration when I went to book a ticket to Gatwick airport for later this month. Strangely trains seemed to run every hour but the FGW site didn’t allow me to book the 10.32 train direct to Gatwick – it would allow me to book two separate journeys – to Reading and then again on from Reading, at higher cost of course, but the 10.32 isn’t given as an option.
Reg, on the FGW twitter account today, replied to let me know that they all use the same booking system so it shouldn’t be any different – which is what I’ve been told before. I’m partly writing this post to share with Reg to provide evidence that there’s a gap between what *should* happen and what does happen. I’ll wait to see if this changes but in the meantime I’ll be taking my zombie arse down to the station to book in person later today and will have to hope the price hasn’t escalated in that time.
There’s nothing like technology making life easier, and more efficient….not.
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.
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!
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!
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
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.
I tweeted today that it was my three year blogging anniversary and Sarah Carr sent this tweet:
140 characters would not suffice for such a question so this blog post is for Sarah, and anyone else who is interested. I hope you find it useful and I’d welcome your feedback, comments and own suggestions.
1. There are no rules
It’s your blog so you make the rules. There are scores of articles out there about how and what to blog, about what will get the most attention, but I think it’s a very personal choice. Why you blog and who you are aiming your blog at are very personal choices. In the spirit of top tip number one, what follows are suggestions, ideas and thoughts – they’re straw men that I’ve put up hoping people will debate, engage with, pull apart and disagree with. I’m not saying this is how, or why, anyone should blog, I’m just offering a few pointers as a starter for ten. Blogging is a bit like swimming, you won’t really get it until you jump in the pool and give it a go.
2. Ask yourself why
If you are thinking of starting blogging consider why. I’d suggest that the best reason is because you want to and the absolute worse are because you think you should, or someone has told you to, or you’re worried that you’re missing out. In my opinion you are missing out, but that in itself is not reason to start! My blog is a personal mish mash of thoughts, ideas and experiences. I blog about anything that takes my fancy so it is a very mixed bag. That seems to work, a lot of my visitors are one offs, I don’t really have a regular readership although 35 people are subscribed to my blog so someone somewhere must be interested.
3. Blogging should be a pleasure and not a chore
This is one of the biggest mistakes I see people new to blogging make, and I suspect that is why there are so many blogs out there with only two or three posts. Take the pressure off, now, stop viewing it as a task that needs done and consider it as a pleasure. I try to treat my blog as an online repository of what has interested me or intrigued me. It is not something I feel that I *must* do. When I started out I felt obliged to blog regularly, and arguably it’s a good habit to get into, but if i felt I had to blog every week it would remove the pleasure of it for me. Horses for courses so to speak (not a burger reference), if routine and structure works for you then by all means schedule your blogging, but personally I much prefer blogging when I feel like it.
4. Try not to overthink it
An extension of the last point really, and one that is much harder to do than suggest. My preference is for blog posts that offer a view, usually with some sort of base in evidence (or occasionally anecdote). I like it when bloggers cite their sources so I can trace back and get more information if I want it. That said my personal preference is that a blog post isn’t written like an academic paper or a formal report. I want it to be an easy read and so when I’m blogging I try to bear this in mind and I try to keep my own posts suitably light, while providing additional information if I can.
Most people write to be read. Tagging helps with this enormously because it allows search engines to find your content and send people your way.
6. Images and visuals
I always try to include at least one image or visual in each of my posts. Again this is personal preference I’m a visual learner and aesthetics are important to me, so I try to include images where possible. Since I’ve been blogging I find myself engaging with visuals far more, I take more photos and sometimes spot things and go out of my way to capture it because I know it will come in useful to illustrate a blog post at some stage. With the rise of Pinterest and Scoopit and other platforms that curate content with an emphasis on visuals, this need is probably a growing one.
7. The platform is not as important as the content
I don’t know much about this to be honest. I started blogging with WordPress and have found it straight forward and easy to use, so I have stayed with them. I’m not sure that the platform is as important as the content although I suspect people who blog for more professional reasons or to make money from it will have a different view? Hopefully this one will get picked up in the comments.
8. Remember once it’s out there it’s there for an eternity
Possibly an obvious one this one but if you put something on the internet it stays there, even if you delete it. Basic rules, mind your manners, don’t blog anything unless you’re happy for your mum and/or your boss to read it. Think before you hit publish.
9. Engage, engage, engage without over promoting
This is the crux of it for me. I blog so that I can share an experience, thought or idea, but the real value comes from the discussion or engagement with it. So I really *really* welcome comments and links back to my blog. I always try to cross reference and link people to other people’s content and blog posts too. That said, there is nothing worse than someone who is constantly shouting about their new blog posts. It’s a hard balance to hit and one that is important – you want the world to know you’ve blogged, because you want engagement and discussion, but you don’t want to be one of those people who is always self-promoting. Well maybe you do, in which case tip number one – it’s your shout, there are no rules; but if you don’t then maybe tweet your blog post when it’s first available, and then I have a rule of three, I never tweet about the same post more than three times – even if I know I’d appreciate input from people. I just hope that it will come to their attention.
10. Start thinking like a blogger and enjoy it
This is an extension of the point in tip six, in the same way that I wander through life now with an increased awareness of images that would support a blog post, I’m also always subconsciously tuned into look for content that would form the basis of a good post. An article, report, video or tweet that I think would warrant more attention. I have a massive long list of blog posts that I may one day get around to writing because of this, but I really have learnt to live tip three, so I’ll get there eventually and if I don’t the world wont stop turning. The absolute most important thing for me is to enjoy blogging, the connections I make and the discussion it promotes.
So on that note…..I’d love your comments and thoughts.
When someone is told (or they decide) that their time is limited, at somewhere or something, I’ve observed an almost primal attempt to do more, fit more in, go further or faster, squeeze maximum effort into the remaining time; that or an almost instantaneous acceptance that time is limited so there’s not much point trying now, accompanied by an inevitable decline in performance/enjoyment/participation*.
One of my most recent personal examples of this was when I decided to quit my job. I had a three month notice period, within that time there was leave to use up and in the end some compassionate leave, but when I resigned I had anticipated, and seemingly most other people had also anticipated, that I would feel an instantaneous relief, that the pressure would fall off and life would gradually return to a more balanced state over the following three months. As it happened my Dad died during that period as well, so I’m well aware that brings it’s own pressures but I quit some months before that and the work pressure didn’t fall off instantly as I’d naively hoped. I’ve been thinking about this period a lot and it seems to me that at the point I resigned, the pressure started to climb (from a level that was already demanding more than I’d routinely hope to give to work, and had done for some time), before reaching a newer, higher peak and then what would have normally been followed by a decline was replaced by more important matters, for me at least, of my Dad’s death.
The simple fact was as soon as my time was limited not only did I attempt to perform most of the duties I’d already been doing (granted I relinquished a few but my workload did not drop considerably at the point I resigned). I tried to finish others that had sat out of reach for some time, I prepared handover and context notes, I met with people who needed reassurance/confidence in the future, I negotiated, brokered and contributed to new business and new bids. I did all of this while trying to support a staff group who were perhaps unsurprisingly delighted for me personally, but with some reservations of the impact for them, and I also wanted to give my time and attention to an exit interview process to ensure learning was captured for other colleagues/the organisation’s benefit. So the pressure and demands just kept growing.
I think I was unlucky in the timings in some way, that I didn’t get to also experience the gradual winding up process, instead that was replaced by family business. I cleared my office out one weekend shortly after Dad’s funeral and then took some time out for a holiday before Christmas. I’ll do more holiday posts in due course and Christmas probably deserves a post of it’s own. It wasn’t a bad one, and I’m not the world’s biggest Christmas fan at the best of times, but there was definitely a Dad, and Grandad shaped hole left since last year. A subtle, but constant reminder, that life is short and our time is limited.
So what I hear you ask. I’ve been so lucky with the support I’ve received from my friends and family, in real life and on social media. I can’t tell you how supported I’ve felt by the contact, the tweets, DMs, messages, the cups of tea, the promises of cake – the people who have not ran in the other direction but have stayed put and gently encouraged me to (re-)engage with life. My blogging has suffered over the last few weeks, I’ve just not been feeling the love for it, or for twitter; two avenues for my energy that have always felt so positive in the past. I think part of the challenge is that I was brought us along the lines that if you couldn’t say anything positive, you shouldn’t say anything at all….and I’ve not really been feeling the positivity (yet). I’ve also not been seeing too much positivity in my twitterstream, lots of people moaning and complaining about life/politics/each other/new business/old business/health/religion/anything else you can mention.
Overall I guess I’ve been feeling a residual pressure, like I’m on high alert. I’ve discussed with a few people the cumulative effect of stress and pressure, from work and my family situation, and the impact that has on your performance and health over time. I’ve spent quite a bit of energy trying to understand where I’m at, I’ve felt quite directionless, lacking drive or energy for most things. Until yesterday, when I fell upon my latest theory, the one at the top of the page about time being limited and it’s impact on performance (and perhaps preference). If my theory re work is in anyway accurate (and let’s be clear it’s my theory scribbled on the back of an envelope, and isn’t very subjective at all), but indulge me, if we go with it then I wonder whether the last few weeks have been my self trying to re-establish an equilibrium. They’ve been about recovery, and regrouping, and observing and identifying what it is, or where it is, that I wish to put my energies next. Almost to be expected really, so I’ve no idea why it’s so surprising.
There were a few catalysts this weekend to remember that time is limited, and that this is no dress rehearsal. There were three articles/blog posts that stopped me in my tracks:
1) Crossword master Araucaria reveals in puzzle that he is dying of cancer - I don’t even do crosswords, I struggle on easy ones never mind cryptic, but as I sat yesterday reading the comments on this article I couldn’t help but feel that what really matters in life is what you give, and you might never know what that is. I’m sure that the Rev John Graham knew he had a talent, and knew he had a fan base, but I very much doubt that he knew before his announcement the way in which he had touched so many people’s lives and given such pleasure.
2) Back for Good from Helen Fawkes – I’ve followed Helen’s journey with cancer for some time now, this is her third diagnosis and she writes an incredibly humbling blog sharing the news and ends with the following I know how I’m probably going to die and roughly when it’ll happen. It’s weird having a likely expiration date. I really hope my Best Before is at least 2023. But you know it’s not the years in your life that matter; it’s the life in your years. Once I have my affairs in order I’m not going to dwell on the dying, I will soon have a new list and a whole lot more living to do.
3) Sad News – Alice Pyne became an online sensation when she wrote her bucket list when she was diagnosed with terminal cancer and started raising money for charity. Her mum wrote yesterday: Our darling girl, Alice, gained her angel wings today. She passed away peacefully with Simon, Milly and myself by her side. We are devastated and know that our lives will never again be the same, Vicky. 12 January 2013 #nightnightAlice
All of these reminded me that life, and our time, is limited. Why should we wait until we are told we are likely to die to think about how to spend our lives. Why do we get so readily seduced into thinking that life is what we squeeze into weekends or holidays. Number one priority on Alice’s bucket list was to get people to join a bone marrow register, I’m already on it, if you are healthy and wish to join to you can go here and get a spit pack sent to register, simples.
Alice’s second priority was for everyone to have a bucket list. I’m working on it, going to give it some more thought and start compiling. After all, we all have one life, if ever I was aware of that it’s now. I feel like I’ve an opportunity to consider really what I’d like to achieve/see/do and start doing it now. Watch this space….all suggestions very welcome!
* This theory may fall short on a number of occasions, such as when exercising or studying – however once the finish line is in sight, nearly every half marathon/10k runner/undergraduate/teenager I’ve ever seen picks up the pace for the absolute final burst
It’s 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:
There are two twitter conversations in the last twelve hours that have encouraged me to put fingers to keyboard – one was a discussion with @ermintrude2 @martinhowitt @copperbird @HelenHSAUK @jaxrafferty about obituaries and whether you should have ‘live obituaries’ and the other with a similar group and @timolloyd and @paulcoxon81 about social media and whether it can be taught.
You may be sat there wondering how the two can be linked, I’m going to suggest that they are, because they’re fundamentally about recognition and acceptance. Last night I posted my grandfather’s obituary from the local paper and I was delighted to receive comments from people who had read it and felt like they knew something of my Grandad. I guess there was a sense of recognition, I have a pride in being associated with such a great man (who if I’m honest is possibly no more or less great than anyone’s Grandad but I’m particularly proud of him because he was mine!) and I get a warm glow when other people also recognise in him what I experienced.
I was also remembering my first boss, who had worked for over 35 years in Special Education in Ireland when he retired. He spent about six months receiving awards and accolades, being dined and respected…all very definitely due, but we were talking over a cuppa on one of his last days at work and he remarked that he didn’t understand why it had taken him to retire, for people to encourage him. He was one of the most supportive people I have ever worked with, he saw my potential and invested a lot in me, building my confidence and belief. He took the time for me, we would often have early evening chats over tea once the rest of the department had emptied out. He was a truly great man, who had a significant influence on me and my thinking….and evidently on many other people’s. It did leave me wondering whether he would have had a better experience if he had received just some of that recognition earlier in his career.
So, how does that relate to suggestions about teaching social media. Well I guess for me, it all comes down to the same thing, recognition and acceptance. Anyone who can remember their childhood (I’m sure I’m not the only one who felt like this) can probably remember the mix of excitement and fear when you goto school for the first time (I felt something similar when I went to my first OU tutorial a few months ago) or when you join a new club, or move house, or start a new job – that sense of potential, wrapped up in a basal level of concern that you might not be accepted. That you might not fit. That you might get it wrong. I’m not sure that those of us who have been using social media for some time are necessarily the best people to advise on how to encourage or support people to use it, we’re already convinced or we wouldn’t be here. That said I do think people need to be comfortable to learn publicly, to risk making errors in public (most social media platforms are very public), to have a go, to contact people and risk that they won’t reply, to realise that there are slightly subtle differences in online communication, people may not reply because they don’t see something/are too busy but that doesn’t equate to ignoring someone – it took me a long time to feel comfortable with not trying to catch up with conversations.
So, what is this rambly post all about. I guess I have an overriding sense that we could all encourage each other a bit more than we do. In some way I suppose that is what #ff on twitter is about (although I don’t do that!) I hope it is also something of what Acknolwedgers is about too. Some public recognition. Maybe ‘live obituaries’ are a step too far, but perhaps an occasional public recognition or acknowledgement wouldn’t go a miss.
We rarely understand the totality of someone’s experience so if in doubt, a virtual high five, a word of encouragement, a response to their tweet, won’t do you any harm and it might have a considerable impact on the person stood at the edge of the circle trying to figure out how to join in. Go on, pay someone a compliment or give them an acknowledgement today.
I was in London at the weekend, and again for work today, and on both occasions I’ve been struck by the new BA Olympics adverts. A tongue-in-cheek series focusing on the Olympics and encouraging people not to fly, instead promoting staying home to support Team GB during the Olympics and Paralympics.
There are a series of billboard and tube adverts too, and you can even type in your postcode on the BA website and create your own advert featuring a plane down your very own street, just click the link and enter your postcode.
It will be interesting to see how this campaign works for BA, I’ve always liked a spot of reverse psychology and I for one will be keeping an eye out for summer holiday bargains during the Olympic season. Until then, I’ll be supporting Team GB and their #homeadvantage all the way.
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.
Earlier on this evening I blogged about my fitbit, my favourite latest toy. There’s been quite a lot of chat in my twitterstream this weekend about being healthy and exercising, not sure whether it’s the cold dry weather, just that time of year, the promise of Spring, the hopeful shedding of our winter layer of extra blubber (oh no, that’s seals not humans), maybe it’s watching burly men in the six nations, maybe it’s just contagious human behaviour, whatever it is I’ve been enjoying all the positivity.
Last weekend I was chatting with Betty who was telling me of her two marathon plans for this year, two I tell you. She’s never run further than a 10k race before, although she does do triathlons. Running is her least favourite bit so she’s facing her least favourite head on. I left her house, having enjoyed her home baked banoffee pie, feeling suitably sluggish and suitably inspired.
This afternoon @amcunningham asked if I fancied the Cardiff Half this year. I ran my first, and only, half marathon in Cardiff the year before last. Anne Marie and Chris gave us dinner the night before and came to provide support on the day. I would have loved to return to Cardiff and ran the half this year but unfortunately the date doesn’t work for me this year. Anne Marie did get me thinking though.
Yesterday I went for my first run in far too long. I ran in memory of Sherry, you can read more about that here. I was just grateful I could run and each time my legs have ached today I’ve felt similarly glad that I can.
So, thanks to the twitter chat, thanks to writing down what I’ve know (and denied) for a while – exercise makes me happy, thanks to the inspiration of Betty, Anne Marie and Sherry, I’ve bitten the bullet and signed up for another Half Marathon in 4 months and 11 days. Given my first was in Cardiff (where I went to University and worked for a number of years), I figured I’d come closer to home, so Torbados it is, the English Riviera, Torbay Half. Bring it on.
(cc) Photo by Lawrie Cate
Pick what you’re interested in…
- @MartinHowitt *cough* celebrity is a relative construct Mr H ;) tweeted 3 hours ago
- @mikey3982 @Crouchendtiger7 In a strange global-appreciating way I'd rather the whole of the UK watched eurovision than x-factor! tweeted 3 hours ago
- @shefaly @alaindebotton Yeh, can't beat it, it's like it is what twitter was designed for, but particularly liked your child-freeness one tweeted 3 hours ago
- I just backed 'A colouring book for married people' on @kickstarter present for smug marrieds everywhere. Very cool kck.st/YITJc8 tweeted 3 hours ago
- RT @alaindebotton: The more capable a child is of surviving without its parents, the more s/he dares to find them annoying. tweeted 4 hours ago
- RT @shefaly: Like elective child-freeness. “@alaindebotton: As adults, we try to cultivate the character traits that might have rescued our… tweeted 4 hours ago
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