When Dad was in the hospice he was given two memory boxes to fill for my nieces. This week he’s been thinking about what to put in them, we’ve covered all the usual things – photos, games, things that are symbolic of Bobby and relate to him. Mum and I got thinking though and we thought it was quite hard to know what to put in – Dad is a man of few (written) words, a man who is practical not academic, a doer not a thinker, a man who shows his love by making or fixing….none of which is that easy to capture and put in a box. One of the reasons I started blogging was in the hope that when my niece was older (and now I have two when they’re both older) that they’d have some record of what their Grandad was like, who he was and how he lived his life, and his death. I want them to know what a great man he was and what a fantastically brilliant Grandad he would have been if things were different.
I’ve been thinking a lot and intend to try and capture yet more memories and Bobby’isms to share with them when they’re older. For now though we wanted to capture other people’s memories of Dad and we came up with what I think is a fairly inspired idea – if I say so myself! We thought that we’d give people postcards at Dad’s funeral and ask them to share a memory, or a thought, or an expression – or anything really that would capture Dad. In a warped way I’m almost looking forward to hear what people say. I remember reading Graham Norton’s Telegraph column where he talked about the time after his Dad’s death:
I don’t think it’s an exaggeration to say that I got to know my father better in the weeks following his death than I ever did or could have done when he was alive. These positives don’t take away the pain but I think they can help us make sense of what has just happened.
In a strange way I’m looking forward to that time, to the memories, to hear about how other people experienced my Dad. I know that it will be affirming. When other people’s Dad’s were at work, or away on business, or too busy watching football or down the pub, my Dad was always around. He was very present when we were young kids, as a postman he worked hours that meant he was able to be very involved as a Dad on a daily basis. Really he was ahead of his time and played a very active role in our upbringing, he was one of a very small number of Dad’s at the school gate picking the kids up from school and certainly one of the few Dad’s (only?) I knew who would proudly iron (in shorts in the garden if the weather allowed)! He really was a great Dad and someone that people loved to be around.
I know that Dad has had a positive impact on so many people and I can’t wait to try and capture some of that so his granddaughters grow up knowing how much he loved them and how great a Grandad he would have been. For now we’ll stick with the postcard idea but if anyone has any other suggestions for how we capture memories I’d love to hear about them. Thank you.
This will be a short post to update on Dad and to highlight a new book featured by the Guardian that looks brilliant!
Dad finished his antibiotics yesterday, having finished chemotherapy last week. He has a handful of pills to still take each morning, and for the time being still has his PICC line that needs flushing each week. He also needs to be closely monitored with fortnightly blood tests and he’ll continue to take his own obs, temperature/weight/O2 sats each day. I’m also sure the unofficial but ever-effective Sylv-monitoring will continue. The only additional treatment available to him now is to continue blood transfusions, when and if he needs them (although the chemo does appear to have slowed the bleeding tumour down) and to treat any infections or illnesses that crop up, as you would with anyone else.
So to all intents and purposes Dad is free, certainly from the jaws of chemo, if not from the cancer itself. Dad’s condition is still very much terminal, he could decline rapidly (or catastrophically deterioriate, as we were once told) at any moment. He could also of course continue his fight and face an inevitable gradual decline, after all he’s 64 and old age will get all of us eventually, sometimes I think Dad can convince himself that it’s not the cancer that is the problem, just old age creeping up on him.
His oncologist wont see him again now until mid September. When I was watching 24 Hours in A&E at the weekend a lady referenced the fact that her next appointment wasn’t for 6 weeks so at least her consultant believed she’d live that long. It made me chuckle, the subtle ever-present signs and symbols that people can find when they look for them…we had all commented on the fact that Dad’s appointment was a whole eight weeks away, and taken comfort in that inherent optimism. While I at least am not completely confident he will make it that far, but we have to hope and continue hoping he will.
My Dad is a phenomenal example of how setting short term goals and striving for them can keep you going. The immediate goal is to live to see his second granddaughter, due in two weeks time. If he manages that, the almost unthinkable landmark is his 65th birthday in September, which would also coincide with his initial diagnosis five years ago. I really hope for my Dad that he lives that long, in the immediate term I think becoming a Grandad again will be a boost for his soul, aiming towards being able to claim his pension at least once is critically important, as is (in some small way) not breaking the appointment he has made with his oncologist for later in September – my Dad is a man of his word and once an appointment is made, he’ll damn well make it, unless of course the grim reaper gets him first.
So what has this got to do with a book I hear you ask? The illustration above comes from a feature in the Guardian of a new book by Nick Wadley, Man + Doctor, that charts his experience of the medical profession and hospitalisation. I’ve already ordered myself a copy and look forward to flicking through and nodding (I know I will) with the familiar resonance of life drawn.
The final drawing featured in the Guardian was the one above, marking his liberation from hospital. Dad certainly isn’t skipping and dancing his way to a new healthy start in life, but I hope he feels something similar, a liberation as he is released from treatment, in time to enjoy our fleeting English summer.
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 week ago I wrote a post explaining Dad’s latest situation with #cholangiocarcinoma Don’t give up the ship, fight her till she sinks. At the time we’d just seen his oncologist and heard the news that Dad’s one remaining option was to have chemotherapy in an attempt to stem the tumour in his stomach bleeding, which in turn is causing him to become severely anaemic and requiring regular blood transfusions.
On Monday Dad went to the unit where he receives the chemotherapy to have his prep session and bloods taken. Less than a week since his last transfusion and he’s anaemic again and his haemoglobin level was down to 7. The fantastic staff did all that they could and managed to fit him in on Tuesday for another blood transfusion, in order for him to start chemo today as they’d originally planned. All of this organised at the drop of a hat, with Dad’s specialist nurse doing what he seemingly does best, twisting arms and calling in favours. So today was his second day at the unit, ten hours at a time, so far so good. The chemo is very risky for Dad, but its a game of odds and the balance of probabilities suggests that doing nothing is even riskier.
Possible side effects include all the usual things (anaemia, hair loss, constipation, wind, loss of feeling, impaired immune system), a major bleed (not surprising given the amount of blood he is losing anyway) and neutropenic sepsis.
Dad has had sepsis on a couple of occasions, including the last time he was on chemo, they’ve warned us that the most dangerous time will be this weekend. Anyone who has ever been taken ill on a weekend, never mind a Bank Holiday, never mind Easter…will know that you don’t want to end up in A&E then. That said, I’m really impressed with the fact that they have raised the issue and reassured Mum that we have to be explicit that we need attention, and it’s also good to know that the hospice palliative care team are aware too. Unless you’ve had to do it I don’t think you can necessarily appreciate how hard it is to request attention once you’ve been admitted into hospital, especially in a busy A&E Department where you’re surrounded by other poorly people. This leaflet, and it’s explicit time bound permission statement to go back and insist on action, is really powerful stuff. Very impressive. This flimsy piece of A4 paper could make the difference on whether someone like Dad survives, I know that with this piece of paper in her hand my Mum would go and ask for further attention, without it there’s a slim but outside chance she might speak up but evidence so far suggests she’d rather not make a fuss/appear ungrateful/nag/push in etc etc etc. Never underestimate the power of a piece of paper for a generation who were brought up to respect authority!
The other possible side effect of one of the many drugs Dad is on is that it could alter your mood. I’m staying at my folks house tonight for moral support and I can honestly say that this drug has altered Dad’s mood….he was treating his sick bowl as a fashion accessory. My Dad has always been a little off the wall, in fact his party trick when I was a kid was to drive the car with his knees and no hands, but I’ve not seen him in a playful mood in ages. Obviously having the chemo and taking some step to fight it is a good thing, for now.
I was slightly wired all day today, I was up in London for a meeting, and I felt so far away if anything had gone wrong. That said it was a good meeting and nothing did go wrong and Dad is insistent that I don’t put my life on hold for him. Having been home for most of March, unfortunately I have stacks of travel planned in April. If I’m truly honest I’m absolutely dreading what the next few days and weeks hold. That said everyone who has dealt with Dad over the past few weeks has done so with such kindness, that it makes me feel reassured and humbled, and a little more daunted (because my suspicious mind assumes that this is a sure fire indication that this really is coming to an end now). I’ve also been blown away by the number of you who have left blog comments, sent tweets or DMs and those of you who text me when I was silent to check how things were going. Thank you all so much. I know it’s hard to know what to say or do in this situation, I know that some people would just rather not think about it, and I know that I am a walking, talking, ball of emotion at the moment and I’m not the easiest person to deal with at the best of time. Thank you all for your patience, virtual hugs and moral support, it’s really appreciated. I’ll leave you all with the man himself modelling an NHS sick bowl!
My Mum and Dad had what I now consider to be an inspired approach to illness when I was a youngster…they did everything they could to ensure that as children we caught everything catchable, as young as possible! I had measles, whooping cough, chicken pox, you name it we’d be wheeled around to the neighbour’s houses in the hope we’d catch it!
As truly nuts as this may well sound it has stood us all in good stead. I am very rarely ill as an adult, I can count on one hands the days off sick I’ve taken in my working life (and two of those were for operations) and I pride myself in having a strong immune system. That said in the last year or so I seem to be a little more susceptible to coughs and colds, mostly I think since I moved into an open plan office at work!
The odd cough or cold isn’t the end of the world, I appreciate that. However, it is really difficult if you have people in your lives with low immune systems (my grandparents both in their 90s and increasingly frail and my Dad who has bile duct cancer) and I’m finding myself with a growing paranoia every time I hear someone cough or splutter at work. This week there seems to be a lot of illness lurking, and I’ve been up to that London which always seems to tax my immune system at the best of times. As I type this I’m feeling increasingly sluggish, I’m a bit achy and my throat has a tickle. I’ll be really irritated if it gets worse over night because it means it’ll ruin my weekend plans, I’ll not be able to go for a long run or visit my grandfolks or my folks.
In the meantime I’m glad I’m working at home tomorrow as that feels a little safer but if you have any old wives tales or evidence-informed magic potions or recommendations for a quick boost of the immune system I’d love to know them. Thanks in anticipation!