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.
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.
A couple weeks ago I had the pleasure of being on holiday in Beitostølen in Norway. I’ll do a post holiday reflection blog another time, but suspect it’ll be broadly similar to last year’s – which you can read here if you’re interested.
In this post I wanted to share some sage advice that I was generously given by the man in the photos. On Tuesday of my holiday, feeling somewhat bruised (physically and psychologically having tried my skis on for the first time the day before), I decided to go for a walk after lunch – following the cross country route I wanted to ski the next day. This had two advantages, firstly I could see where I was going so I knew what to expect the next day, and secondly if I followed the tracks I couldn’t get lost.
I was on my way down to have a nose at the hut in the first picture when I saw a sight I’ve never seen before, a man skiing with a sausage dog under his arm. I smiled, took a couple of photos and marvelled to myself at his ability to ski and carry a dog. Seriously impressive stuff. The man and his dogs made their way off down the track and I went to have a nose around the hut, before making my way in the general direction of Beitostølen Stadium.
About an hour later I came across the same man, and his dogs, on their way back from their ski (it really is a novel way to walk a dog). This time we stopped to have a chat, he asked if I was pleased with my photos, I explained I was, we commented on what a beautiful day it was and I admired his skiing ability – sharing with him that I’d been incredibly impressed to see him skiing and carrying his dog. He explained that the doggy was getting on, and too slow, to walk the whole lot – I laughed and made a joke about my poor skiing ability and how I hoped one day to be able to ski and carry a dog, or perhaps more helpfully carry a camera without fear of damaging it. He looked me right in the eye and simply said, ‘Don’t worry, it takes time’.
I’m not sure whether he meant learning and perfecting skiing ability takes time, or whether he meant stopping to take photos takes time. Either way it became a mantra for me throughout the rest of the week as I struggled to give myself permission to make mistakes, to need to take time to improve my ability to stand upright, and harder still to bring myself to a dignified stop.
I thought I’d share it with you guys, I think it’s a great lesson for life, especially if you’re getting impatient with the lack of progress in a situation, as a wise man on skis carrying a dog once said ‘It takes time’.
A couple weeks ago I received an email from TFL (Transport for London) about a payment correction. It read as follows:
Fantastic, or so I thought, TFL are taking responsibility for some problem (which to be honest I’m not sure I’m even aware of) but I suspect it was something to do with some of the tube lines being out of sync or out of action that day. Except today I received another email from TFL, this time letting me know I’ve not collected the refund they authorised and telling me how to re-arrange collection. So, in theory this is good news, but I wasn’t aware there was a time limit on the first email, I’m not sure whether there is a time limit on the second, more importantly I don’t see why TFL can’t just apply the credit to my account without me needing to ‘collect’ it.
They should have enough data about my travel habits to spot that I don’t live in London, or to at least realise that I don’t regularly use the tube, even if I frequently do. They have enough data to know I’d only visited that actual tube station twice in the last year, they should know the station I visit most regularly is Paddington, and I would have thought that all of this is irrelevant and they could apply it remotely.
Anyhow, I’m just interested if anyone knows more about what they can or can’t do and/or what they choose to do and/or whether these corrections expire at all? As someone who doesn’t live in London but has been regularly using the tube for years, the idea of a refund is so novel I don’t want to waste it! Any ideas?
In about a month I have a fortnight booked off work, it’s my first break since March and I can’t wait. This year seems mad busy, one thing after another, shed load of work, real life and personal stuff. There have been a couple of weddings, a hen weekend and a forthcoming christening – all good fun, but when you travel for work during the week and are away at weekends, it sometimes feels like you’re on a conveyor belt – at least it does for me. So I can’t wait to get some time away. In March I spent a week cross-country skiing in Italy and was on a total high when I got back – you can read about it here.
So in theory the biggest challenge should be identifying what to do or where to go on holiday. Except life is never that simple. My current dilemma is what to do about travel insurance.
My Dad has a terminal cancer diagnosis, his health can change at any moment, he is currently fine having recovered from his latest infection, but I’m not sure what he’ll be like in a month’s time. So before I splash out on an exotic, far away, expensive holiday (and for once, yes, that is the type I’m hoping for) I need to get travel insurance – except Dad’s condition is pre-existing, I know he is terminally ill, so no policy I’ve yet found will cover me! I’m not so worried about coming back if Dad’s health were to deteriorate while I’m away – my Dad is a pragmatist and he’d want me to have a holiday, blissfully unaware (I think) and I definitely feel like I need one. That said, if his health were to go downhill in the next four weeks I don’t think I could leave!
So I’m looking for an insurance policy that covers me to cancel up to the last minute – even though I know that it’s a possibility. I’m prepared to have to pay an extra premium for that (although in theory I shouldn’t need to – isn’t that the point of insurance) but as yet I can’t find any policy that matches it. I had a look on Macmillan’s site and instead found their Travel Insurance campaign – seemingly years after having had cancer, people are still discriminated against in travel insurance circles.
I’d really appreciate any ideas for where I can get a policy that might cover me. I’ve even gone with a totally awful blog post title in the hope that some real life insurance person might spot it – I’m hoping someone has an idea, rather than I just get inundated with spambot followers but we’ll see. What do you recommend oh wise ones?