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.
It’s three weeks since Dad died, in some ways I can hardly believe it and in some ways it seems much longer. The two weeks between his death and funeral felt quite strange, it was good to be getting on with things, to be planning, organising and arranging. It was lovely to hear so many tributes, comments and memories about Dad and to get in touch with so many people who we’ve not been in touch with for a while. Lots of people were surprised that Dad had died, even though the majority of people knew he was ill, lots of people have also commented on the fact that he never really looked ill, he never complained and they hadn’t expected the news. We have had stacks and stacks of lovely, lovely comments, of cards (Mum has over 70), flowers, phonecalls, facebook and twitter messages and general sentiments and wishes sent from across the globe. It is a real comfort to know how much Dad was loved and respected, and also to hear of his quirks and foibles too, he wasn’t a saint after all.
Dad’s funeral was really special, it went completely without a hitch, as he’d have wanted it to. The Church was packed (my irrational fear was that not many people would be there – I really needn’t have worried), the cadet gang turned up in uniform (which I reckon Dad would have loved), the service was proper without being too Holy and I’m delighted to report that Dad’ s eulogy went well. I was giving it and given that I’m quite used to public speaking I wasn’t too worried about the audience (and lots of people had reminded me that everyone was on my side at this gig), I was confident about the content (you can read it here – in one way or another I’d had long enough to think about it) but I was concerned that I would be overcome with emotion.
Seemingly so were lots of other people! Contingency plans were put in place, practices were held to identify the trigger points that got me every time (1. Mention of my sister’s best mate/ Dad’s surrogate daughter since her own Dad died about 15 years ago; 2. Mention of Dad’s partner in crime Pete; 3. Mention of my nieces), I read it out load and tweaked it till I was almost bored with it – I’ve never prepared so much for anything. On the day the preparation paid off, aside from a brief moment where I went Welsh (it’s impossible for me to say bargain without using a Welsh accent) it went completely as I’d hoped. I held it together, spoke slowly, paused for emphasis and didn’t lose it until I sat back down. Afterwards everyone was telling me how proud Dad would have been, and I knew it and felt it. He would have loved his funeral service, and he also would have loved the cream tea we had afterwards.
The other thing I’m confident Dad would have liked was the Ikea pencils and the memory postcards we had for people. The postcards were designed to capture people’s memories of him so that we can look over them, and share them in years to come with his grandchildren and others who didn’t get to meet him. The design on them was quite simple – his letter boxing stamp and his details – we had a few left for us filled out on the day but we’re hoping that some will arrive back through the post in due course. Mum has also been able to send them with copies of the Order of Service and eulogy to people who weren’t able to make it on the day, we’re hoping that by sharing their memories, they’ll get to feel more involved in some way.
After the funeral we had a cream tea in the parish hall – the scones were from Devon Scone Company and they were an absolute bargain and really lovely! Check out their website if you’re looking for scones any time soon!
The immediate aftermath of the funeral saw time spent with family and friends who had travelled down to be with us. There was lots of reminiscing and remembering and lots of time spent with my nieces who are a great distraction. The most heart breaking bit was when my Uncle turned up (actually the day before the funeral) and Libbie looks up and announces to the room it’s Grandad – luckily my sister had already anticipated that this might happen and so we were somewhat prepped for it, they do look very alike, and in a way that only two year olds do she completely accepted that it wasn’t Grandad and got on with the rest of her day.
The emotional rollercoaster didn’t end there though. That weekend I went into my office to clear it out – I was officially on leave for the two weeks after Dad died but they were my last working weeks of my job, so I needed to empty/sort/handover things. A couple of hours, four black bin bags and six years of my life – done, like that. As I jumped in my car to drive home my immediate thought was that I couldn’t wait to ring Mum and Dad to tell them I’d done it, and then it hit me, like a four tonne truck in the chest – no can do. I couldn’t ring Mum and Dad, even though my mobile still told me I could it was lying, alongside the cheap trick of my subconscious, a nasty one at that – I rang Mum instead, but that was the first real time since Dad had died that I felt I was unprepared for missing him, and the only way I can describe it was that it was a full on force.
I’ve felt it a few times since, none as full on as that. On Tuesday I got my OU exam result (72%) and overall result for the module (73%). Even though nothing about that course was about the grades for me, I was chuffed and I wanted to share that with the folks. Mum was delighted for me, and was pleased with herself too – I can’t tell you how many times she had to encourage me not to drop out of that module, it really wasn’t the best six months to be trying to study, but I’m glad I did it. I’ll blog about that another time and may even write it up for my new work blog that you can read on my new website here.
The final thing worth mentioning since Dad died is the sense of freedom. It feels incredibly odd, massively liberating and if I’m completely honest a little scary being able to plan for the future without having to worry about Dad, or Mum. I’m able to book a holiday or arrange a weekend away, to look at potential jobs and consider moving to London, or further afield, I can have a drink any evening and not worry about having to be sober to drive to the hospital/parent’s house. I hope that the timing of Dad’s death will mean that my Mum and I will both be able to find a new path in life, one where we can remember Dad and celebrate his life, but also create our own again. I’ll keep you posted on how that works out but for now I’m grabbing the opportunity by the scruff of the neck and am holiday for a couple of weeks, touring European Christmas markets and sampling international festivities. I’ll worry about 2013 and the realities of the future once I’ve recharged my batteries and got through our first Christmas without Bobby J. It’ll be different but it’ll be joyous, just as he would have wanted it.
I 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.
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.
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:
— 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.