Collecting memories

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.

The future is rarely a tide rushing in…

This little gem came from Bruce Springstein when he was speaking at a rally for Obama last week.

The future is rarely a tide rushing in….it’s a slow march, day after day

It has stuck with me since then, it’s really a good reflection of how life feels at the moment.

My Dad is dying from cholangiocarcinoma, bile duct cancer. He was diagnosed over five years ago, has been terminally ill since July 2010 and his health has been seriously declining in recent months. He has recently had a two week stay in the local hospice and he came home last week. This week he has really nose-dived.

I’ve been staying with my parents since the weekend and because I’m still working during the day Mum is on call in daylight hours and then at night I take the monitor. Dad has a chesty cough which means he is coughing himself awake at night, he also drops into a deep sleep and ends up making strange noises that are magnified by the monitor. Right now I am craving nothing more than a complete night’s sleep, but there wont be one tonight.

Tonight Dad is quite calm but also fed up. We’ve had a load of discussions, at all hours of night and day in the past week, and he is quite clear that this stage is tedious. He knows he’s dying, he’s grateful he isn’t in pain but he has talked about how much easier it would be to take a pill. This feels like a verrrrry long week, very drawn out and almost like we’re on a slow march to the inevitable. My sister was down for a funeral this week so Dad has seen her again and said goodbye to her and his beautiful granddaughters, he has seen my brother lots in recent weeks and to be honest I suspect he’s almost sick to the back teeth of the sight of me and mum

All of that said he still has his sense of humour. We’ve discussed funerals, memory boxes, wishes, hopes and dreams, what has been and will never be. Dad also keeps giving me advice of how to support my Mum, that is the bit that is most heart breaking for me, he is so concerned about Mum and soooo wants my Mum to move on with her life, and have a life, after he has died. He’s quite funny, he said he didn’t want any funny business, want’s a respectable mourning period, but then she must get on and enjoy her retirement.

In a way I feel that its a little unfair that my down to earth, hard working, solid and respectable parents who have spent their entire lives working hard to support our family, dont get to enjoy their retirement together. I think Dad’s biggest regret is that he didn’t get to be the Grandad he wanted to be – and a great Grandad he would have been too. The simple fact is that cancer isn’t fair, serious illness never is. Life isn’t fair, but as Dad told me last night he is happy, he’s lived a good life and he is glad to be living a good death at home.

That said, I hope this slow march comes to a halt sometime soon.

Liberation….for now

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.

When systems fail Pt2

Last week I wrote a blog post outlining a situation I find myself in and some of my thoughts and reflections about it. I’m not going to attempt to rewrite it here, suffice to say that the précis is my neighbour is (I believe) unwell and not receiving the support he requires. I was blown away by the responses I received, the blog comments, the tweets and the DMs from inquisitive and caring people. In a nutshell people seemed ok with me writing about it, there was lots of mixed reactions about where the fault or responsibility lie, a lot of compassion and a few people advising me on my next steps (most of which suggested I get more involved/take more action).

So here we are, five days later, and I am wondering whether I can cope with much more. Without going into great detail, a few things have happened:

• My neighbour’s behaviour has continued to be erratic and unpredictable. Lucky for all of us (and I mean that genuinely) that is completely legal and we enjoy enough civil liberty that it seems to be you can behave in any way you like (including 24-7 LOUD music, shouting, swearing, ranting, smashing things up and general noise) within your own property. In fact it appears that you can do anything you like within your own four walls. Which on a good day I think is totally appropriate, but I guess it only works if you have enough consideration/awareness for those living next door.

• There have also been incidents of questionable behaviour (I guess it depends how tolerant you are to some extent) outside our homes, which luckily for us, means that there are some grounds for action. The action so far has been the Police checking things are ok, and when they’ve felt they weren’t on one occasion (as I understand – I don’t have the details obviously) they took my neighbour to the police station. I don’t have the detail so I don’t know why or how long he stayed, but I do know that this should have been my first chance to get a full nights sleep for weeks – except other life events took over and I wasn’t at home anyway.

• Other neighbours have started getting involved and the Police visited me the other day thinking I’d reported something and I hadn’t it was another neighbour. In a way this actually made me feel really glad that I wasn’t the only one pro-actively seeking to address this issue and concerned for his welfare.

• The Neighbourhood Policing Team have been out to visit the local area to discuss Anti-Social Behaviour. They asked a lot of questions and said what they could do about a few situations, or at least what there plan was, a lot depends on what people would be prepared to make statements about to them and whether they would be prepared to attend court. Since I’ve opened my eyes wide and started really taking notice it seems that there are quite a few parallel situations in my immediate vicinity and I’m left with two options – do something or do nothing – at the moment I’m on the do something path.

• I have made a statement to the Police and agreed to make myself available to attend Court if it ever comes to that. When asked to make a statement, I wanted to get it out the way so the upshot was I missed some of the tennis to get it done, but I also saved a very friendly PC from at least one hour of ‘high visibility policing’ at the weekend! This left me feeling completely torn, as outlined in my last blog post I think this is a health not criminal matter, however there doesn’t appear to be any other way to get it addressed. In the end I reconciled myself with the fact that I just shared what I had seen (and in some instances heard), I don’t decide what happens with that info and I was quite honest – so when asked whether ‘I am distressed by the events’ was a fair reflection, I said no! This what more than an issue of semantics as well, I didn’t feel distressed (suggestion being it was me who was the victim – see below), I do find the situation completely distressing. I’m not sure that the subtlety was understood but I was not, and am not, interested in blaming anyone, I am very prepared to share the situation and as far as I can the impact.

• Since that point I have been looking at my situation with clearer eyes and to be honest I am starting to feel a bit unsafe and vulnerable. I have even considered whether I am a victim of my neighbour’s behaviour. I’m sure that was never the intention, and it’s something I’ve been aware of and tried to fight myself, but I am starting to feel a bit exhausted by it all and scared to know what I’ll find when I get home late of an evening. That said I’m not a victim just yet. For now at least.

• I had a conversation from a family friend who had a key and was trying to check on my neighbour when I got home from work on Monday. After he was unsuccessful he came in for a five minute chat. He was genuinely concerned about my neighbour’s health and welfare, he had known him since school and periodically came to check on him, but he’d heard he’d been having dealings with the Police, and wanted to check he was ok. My neighbour wasn’t interested in answering the door, if indeed he was in the house at the time. This guy changed my perception quite a lot, if I believe all he had to say (and I have no reason not to),  then the message was that my neighbour’s parents and family members were at their wits end, they don’t know how to help him, they have all spent years trying to support him and feel like they can’t do any more. They had reached the conclusion that the best thing that could happen was that he could be detained at her majesty’s pleasure because they felt then he would have a period of time in one place (without drink or drugs) where people would be able to support him to address his health. Their suggestion was that if the Police were involved perhaps he would be put away.

This final point made me feel completely conflicted, I cannot begin to imagine how hard it must be to watch someone you love in this situation, I’m just a neighbour and I’m struggling, this guy is their son, brother and friend. And, to reiterate the point in my last post, he is a nice lad, he is just unwell. I am slowly beginning to understand how hard that must be for people, and the completely pervasive impact it has on your own life.

That said, I can’t help but think criminalising him (even if it is the quickest/easiest/only route to get him support) is not appropriate. Hence my earlier conflict about giving a Police statement. To be fair to the Police, I have heard at least five officers mention the Mental Capacity Act, and they are very considered in their approach. They are not taking this situation lightly. They are very much aware of my neighbour’s rights and the balance between what he is completely entitled to do in his own home, and when it is appropriate for them to take action.

The stage I’m at is that I am exhausted by it all (and maybe am just exhausted by life more generally, it’s been a fairly intense four weeks). I do feel like the Police are doing all they can, I don’t think that is necessarily the best way of dealing with things, but I’m at a loss for what else to do. I am getting fed up with trying to help, with being eyed with suspicion for sticking my oar in (possibly my own paranoia), with having to make a judgement call of what is irritating (but ‘normal for XX’ behaviour as I heard it referred to yesterday) and what is more severe.

I am also plain and simply knackered. I’m tired of feeling unsafe in my own home (which I think is where this is getting to) and I’m tired of not knowing what I’ll find when I get home. I’m also plain and simply tired because if you live next door to someone who plays non-stop LOUD radio between the hours of about 8pm-8am it is a challenge to get to sleep – and let me tell you last night’s Late Night Love call in was dire (even muffled through a brick wall).

As I sat writing this, at about 7.15am, I saw my neighbour wander off down the street. Dishevelled and disorientated would be a good word to describe him. I’ve no idea where he is off to, or what he will do, but I still remain with a deep pebble of unease within myself about the whole situation. I hope he keeps himself safe.

When systems fail

I live in a terraced house in a large market town in the sunny South West. I moved into my house about six years ago and my next door neighbour’s mental health has been fluctuating ever since (and actually I now understand since long before). I don’t feel at liberty to discuss his details, and I’ll not include any photos on this post, this story is an example, it is not a complaint about the actual situation. In terms of context he’s male, in his thirties, and a lovely lad – my Mum really likes him given a few conversations they’ve had over the back garden wall.

I came home from work last night early (about 5.30ish) and his house was completely open, door and all the windows (upstairs and downstairs), music was blaring and there was a small assortment of objects in the front garden (half a hoover, a yellow pages, some rocks, a butter knife, some torn up photos and a pink cuddly toy – that’s not a joke, it did look a bit like the contents of a Generation Game conveyor belt). My neighbour was nowhere to be seen. I had a chat with his neighbour on the other side and she explained that he hadn’t been well for the last few days (I’d not been at home for three nights), the Police had been out to visit a couple times, she had seen him walk off into the local estate about 25mins earlier.

While we were talking he came back, he was dressed in shorts, flip flops and a silk kimono dressing gown and was carrying a litre size glass tankard which he promptly informed us was full of Southern Comfort. Some small talk was had and we all went on with our lives.

Which meant for him he went inside and started smashing things up in his house. I know this because despite being an old terrace it sometimes feels like there are no walls, they certainly aren’t very well sound proofed. Concerned for his welfare I rang the Police Non-Emergency line (101) – I have no contact details for his GP or the Mental Health Crisis Team, so I really had no other option. Officers came out visited him and I got a call back to explain ‘he had a small cut on his finger but he was otherwise OK’. I explained that it was his mental not physical health I was concerned about, the call handler explained that the Police couldn’t help with mental health, but I was also told to call back if I had any further concerns.

Two hours later after the music was cranked up even further, the contents of a bedroom had been hurled out his first floor window and I was in the kitchen making my tea I saw him walking around the back of our houses and knocking bins over. This I decided meant it was worth another chat with the Police. After twenty minutes on hold, and one suggestion that I should call environmental health if it was a noise issue, and my persistence that this wasn’t about noise, they agreed to send someone out.

I went to Asda to get milk and was relieved to see a friendly policewoman when I got back who I first met a couple weeks ago when she became involved in this situation. I have complete confidence in her wish to do a good job, previously she had managed to convince my neighbour to go to hospital with her for medical attention. He hadn’t been at home by the time they got there and they were very concerned for his safety. They were also, I think it’s fair to say very frustrated, I’d go as far to say almost as frustrated as me. I have concerns that I’m wasting police time, after all this is not a crime, this is an unwell man who needs help. I also get hacked off with being told to speak to environmental health – while I am increasingly concerned about the impact this is having on my life and the life of our other neighbours and of course the value of my home, and any chance I have to sell it – I do not contact them for my own sake, I am concerned about his health. The police officers both reassured me I had done the right thing and I the only thing I should do differently is use the priority number if I’m concerned, don’t bother with 101 (if I had done that I guess they might have got there before he left but 20mins on hold and all that).

So here’s the real deal, as I understand it and the real point of this blog, to explain a ridiculously flawed system. The Crisis Team will only take a referral from his GP, the Police’s power is limited, as much as I’d like to think environmental health is the solution to this situation I don’t think monitoring noise levels will lead to anything but at best a short term solution. This is a young’ish man who is unwell. He sometimes seems to realise he is unwell, sometimes doesn’t. He has a long history with a number of services and seemingly very little social support. I’ve not seen his lodger in a couple weeks and suspect he has drawn a line and moved out. As I type this his music has stopped (having been on full since midnight to 7.30am) and things have gone silent, as much as I’d like to think that is a good sign I have a deep unease in my belly. I just hope he is ok.

If he isn’t, if he has harmed himself, or if he snaps and harms someone else, I will feel culpable in some small way. I feel complicit in this situation now, and I wouldn’t wish it for anyone.

I understand that the system is complicated, and I understand that resources are tight, and I understand that he probably thinks that he is OK, and I appreciate that he doesn’t accept the help he is offered and I suspect he isn’t taking his medication and I know he is drinking (which actually probably means the substance misuse service, if it still exists, should also feature in the tangled web)….but I also know that he is a good guy who is just a bit challenged with life at the mo and I don’t much like living in a society that stands back and lets that happen.

The system just seems to fail him. It also fails the people working in it. As a member of this community I am also starting to think that it is failing us. The absolute ridiculous thing about this system of course is that it isn’t one system, and therefore there isn’t even any one person to contact to try and address things.

It’s nearly half eight now and the school on our road is getting busy, it won’t be long until the kids and parents arrive, and inevitably stand and stare at the contents of the garden. I dread to think what the parents will say to the kids who ask the inevitable and obvious questions, my suspicion is that they’ll either ignore it and shuffle them past, or they’ll blame it on the ‘mad man who lives in that house’ (yes I’ve heard that said). I hope just one or two of those kids grow up to think differently about things, I hope they get jobs that are about helping people, and I hope if there are any future police officers or mental health workers or social workers in that bunch that the system is truly focused on the individual’s who needs help by then. That gives us about twenty years to fix it, I truly hope it is sorted by then!

Living on quicksand

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

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

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

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

There are so many unknowns and so little certainty, the immediate reflection is that it can feel overwhelming at times. It’s like a constant faulty rollercoaster ride that you can’t get off, occasionally it slows, in fact sometimes it stops just long enough for you to feel rational/balanced/normal again then it’s like it flies off again, throwing any sense of equilibrium out the side of the ride with you…Then of course there is a continual, constant balancing act of making the right call around priorities in life. The hard thing about knowing someone you love is terminally ill is that it provides a lens of constant reflection, every decision (if you allow it) could take on a significance of monumental proportions. Well maybe I’m being a little dramatic, perhaps not every decision, cocopops or muesli for breakfast shouldn’t have a massive effect, but knowing whether to visit tonight or wait until tomorrow could.

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

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

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

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

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

The cancer rollercoaster: living with the unknown

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

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

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

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

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

Just about the only thing that is clear this evening is that the bed Dad had in the local hospital was needed for someone else, he was growing increasingly agitated and exhausted with trying to understand the system/decisions/information, and he was being discharged irrespective of the knowns or unknowns. It’s been quite an immersion, not that I ever really escaped it on my week away, but it’s a real reality check as I sit on their sofa banging the keys trying to make sense of it, or share the lack of sense in it with you (assuming as the eternal optimist I am that someone has read this far), and think about how all encompassing living with not knowing is. There are so many unknowns and so little certainty, the immediate reflection is that it can feel overwhelming at times. It’s like a constant faulty rollercoaster ride that you can’t get off, occasionally it slows, in fact sometimes it stops just long enough for you to feel rational/balanced/normal again then it’s like it flies off again, throwing any sense of equilibrium out the side of the ride with you.

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

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

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

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

A game of odds #cancer

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!

Germ paranoia

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!

Here we go again

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