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A case of mistaken identity? A matter of life and death
My Dad died four months ago from bile duct cancer, cholangiocarcinoma. Since then I’ve seemed to blog less, and in a way that may be no bad thing, I’ve been doing lots of thinking and reflecting and recharging, but have had less concentration and less inclination to put fingers to keyboard. Then this week a chance conversation on twitter with the lovely @ChrisandHarvey got me thinking, and suitably wound up enough to write this blog post. I’ve followed Chris for a couple of years, he’s a hugely inspirational guy, Dad to his son Harvey, and he works as web manager for Weldmar the hospice in Dorset; go check him out. He retweeted this tweet:
This just left me feeling quite deflated, I wasn’t as philosophical as Mrs Glove and not as quick to just accept that was that. I have blogged on the life changing care that our local hospice, Rowcroft, provided for my Dad and our family in his final days. The Hospice at Home team made an immeasurable difference and I have committed to myself to continue to raise awareness of the excellent work they do, which is sort of where this post comes in.
So what’s the problem? Well luckily for you the CEO at Weldmar, Alison Ryan, wrote an excellent blog post outlining why this is problematic. I’m not going to repeat all that Alison says, you’d be better off going and reading her original post, but in a nutshell she is drawing attention to the fact that too often people in the local area are under the mistaken understanding that hospice care is provided by Macmillan. This matters for two principle reasons, the first is around fundraising, people going onto the streets to raise funds as a thank you, but mistakenly providing them to another incredibly valuable charity. The second reason of course is more pragmatic, if people don’t know who is providing their care and support, then what happens if they need to complain or make a request? Alison draws the brilliant analogy that not all vacuums are hoovers, the same goes for end of life care, not all hospice care is provided by Macmillan, in fact as I understand it in the South West very little (if in fact any?) is. As I understand it this is a common problem faced by many hospices, how do they get the message across that they are providing the service that they do.
Is it a case of overload? It’s a simple fact of life that by the time you encounter support from a hospice then you are already having to deal with some fairly harsh realities, life and death decisions and if our experience is anything normal you are probably quite simply overloaded. Whether you have been dealing with a terminal illness, or spent years living with a medical condition, or indeed if you have just found out that your life is limited, there’s a good chance that you are exhausted from the information and advice overload; you are likely to have met more professionals and individuals than you can even remember, you struggle to remember their name (and trust me it’s awful when you are so grateful and yet can’t remember the name of the person with you) never mind who they work for; you are dealing with so much that who funds the staff supporting you isn’t likely to be at the front of your mind. When Dad was in his final weeks one of the things I did once the hospice staff started visiting us at home was start a list on an empty cereal packet that happened to be in reach, of the names of the people as they arrived – this served two purposes, it meant that I’d be able to check each time I forgot who was upstairs with Dad, and it also meant that we had a list for when we came to thank people afterwards. It’s not like me to be so organised and I don’t know why I did it, but I’m glad I did.
Do we just not like talking money? So, at what point should the hospice be making it clear who funds the service someone is accessing. It could be because we’re terribly British about it, and because we don’t have a great awareness or general literacy around the cost of healthcare, but at no point was the cost of Dad’s end of life care discussed with us. That may well be completely appropriate, and I know that no-one who works for a hospice would want a family availing of their services to worry about the cost. Despite this, I know that my Dad for one was incredibly aware that other people could be benefitting from the support he had as an inpatient at the hospice, in fact I think it was one of the reasons why he wanted to return home. I’m not sure, even now, on the relative costs of providing an inpatient service versus the hospice at home service, I have seem some statistics about what it costs to run them but I’m not sure whether it was cheaper for him to be supported to die at home, I suspect not.
Anyway, this wasn’t a post particularly about Dad, it was a more general sense of what limits us from discussing, or knowing, the costs of such a service. Maybe we have a long way to go before people are confident or comfortable in discussing the costs of care, I know when I blogged about this before it got a very mixed response in the comments and on twitter.
Is it simply a case of mistaken identity? Unfortunately it seems a bit of a case of David and Goliath, Macmillan are an excellent organisation, much larger than any of the independent hospices across the country providing palliative care. They are also very canny and often pump prime the establishment of services and fund a small number of posts (there’s more in Alison’s blog post about this) and I guess once you are established as a Macmillan Consultant/Nurse/Advisor then you aren’t likely to ever really change in people’s minds who you meet.
Macmillan are also blessed with a very strong brand, and lots of hospices aren’t in my opinion, although I do *love* the new Rowcroft branding! I’m sure that it’s a hard sell to trustees, colleagues and supporters if you want to spend what hard raised money is available on changing branding but I can’t but think it might help in some instances. Short of rebranding and awareness raising, I wonder whether a conversation should be happening at a more strategic level. I’m under no illusion that this blog post is likely to reach more than a handful of people, raising anyone’s awareness is a good thing, but a more straight forward honesty and awareness from Macmillan might be welcomed too, after all we all want the same thing, to provide a quality end of life care service and for people to have greater awareness within that of who is providing their support. If the recent horse meat debacle has taught us anything, perhaps it is that a case of mistaken identity is not one that the public take too kindly too.
So the next time you decide to give to charity or sponsor someone, or are looking for an organisation to raise funds for, then consider your local hospice, they’re likely to need your funding far more than some of the larger organisations.
Life after Bobby: the first 100 days
It’s 101 days since Dad died today, I’d been thinking about this (non)-anniversary all week and was fully aware of it yesterday but couldn’t bring myself to concentrate long enough to write this post then. I’m confident Dad would appreciate the quirk of it being 101 days anyhow. So I’m going to keep this short (I tried…it didn’t work, sorry) but share some of my reflections on life after Bobby. I did a few posts in the immediate weeks following Dad’s death, one after a month and another after two months, but I’m hoping the passage of time will make this one slightly more considered and reflective.
Missing him
It seems that the normal timescales for grief and grieving suggest that we should all be a little raw still, given how soon it is since Dad died. I’m not claiming I’m out the woods, but mostly I feel like I’m doing ok. The grief is there but it’s almost like a washed pebble, it’s like a lump that’s present around and within me, but it’s by no means raw and jagged. I wonder if part of that is because we had so long to come to terms with Dad’s illness, I’m confident part was due to the amazing support from the Rowcroft Hospice team when he was dying – it was almost like our grieving started when they arrived in with us, and they were phenomenal in that regard.
Don’t get me wrong, I do miss Dad, there are loads of occasions where I’m stopped in my tracks at my sense of missing him. I’ve had an almost visceral response on a handful of occasions, the most recent was when I was strolling around the Vasa Museum and I was thinking how much Dad would like it, it hit me like a ten foot wave, Dad would *have* liked it; past tense. I thought I was alright with that until I turned to remark aloud Dad would have liked this and the words stuck in the back of my throat, hard to form without an extra gulp of air or two.
On the plus side I’ve learnt that it is possible for anyone, even me, to cry Cheryl Cole tears. You know what I mean, simple beautiful diamond tears cascading down a cheek and deftly caught in a tissue, as opposed to the full on, red bloated face, tear avalanche accompanied by full on shoulder shakes that was the hallmark of my grief in the very early days. It’s not so much a learnt behaviour, more a necessity. If you find yourself thinking of someone you’re missing on public transport (I’ve learnt I do a lot of my thinking on trains) the you can’t afford to make a spectacle of yourself!
Moving on
When Dad died I changed my facebook profile pic to one of him holding me as a baby. It was in some way a marker and virtual acknowledgement of the role he’d played in my upbringing, but on a very factual level it also served as an alert. Most of my friends knew Dad had been ill for some time but I hadn’t actually told many he was dying so having a new avatar meant people looked and very soon found out that Dad had died – this cut back on my need to contact people and let them know individually. In addition Dad had an epic beard which was an awesome talking point. Here, take a look it was this photo:
The avatar was also a bit of a comfort for me over the past 100 days. Every time I looked at it I’d smile at Dad’s beard as a starter, but also at the memory of his chest! I spent hours looking at his chest the week that he died, he’d take every opportunity to get his chest out in the sun, famously stringing an extension line into the garden so he could iron in his shorts in the summer (once a matelot always a matelot). One of the advantages of him being at home was that he didn’t have to wear full on PJs as he would have felt obliged to do in hospital, so that chest is scorched in my memory, in a good way.
What has that got to do with moving on. Well this weekend, encouraged by a throw away comment on twitter and a new hair do, I changed my avatar back to a photo of me. I’d been wanting a reason to do it for a wee while, I didn’t want to change it too soon and I was worried that I’d feel like I was erasing Dad in some way or moving on to quickly, but hell it’s what he’d have wanted and my barnet won’t look this good for long, so it’s back to me!
Remembering reality
One of the joys of Dad’s death and dying has been the excuse to reminisce and share stories. There have been lots of words about Dad over the past 100 days and I’ve caught myself occasionally glossing over the bad bits and just focusing on the good, turning Dad into an almost virtual saint! Anyone who knew my Dad would laugh at that, he was all manner of goodness and had a true heart of gold and would give anyone his last penny, but he wasn’t no saint. Catching up with Mum this weekend it felt good to acknowledge as much, to discuss the good but also some of the more irritating or less favourable bits.
The most striking bit for me is the sense of freedom I feel now Dad has died. It’s not that I actually think Dad would have judged me, all he ever asked was for us to be happy, and yet in some way we didn’t often see the world in the same way. We were quite different people and I maybe it’s completely natural for all children to want to please their parents, but it feels a relief to know there is only one left to have to please! I guess this is wrapped up with a growing realisation of how full-on and demanding Dad’s illness was at times over the past five or six years, not to mention how demanding my relationship with work had grown (I quit my job in September, just before Dad’s health seriously declined and was working my notice period when he died).
It certainly feels good to be free of some of those residual pressures, and it similarly feels good to speak freely of them.
Getting back on the social media donkey
When Dad was dying I received a lot of support via social media, it helped me no end to know that people hadn’t forgotten about me, despite my absence. I lurked occasionally, ignored it a lot and really questioned how futile a lot of the interactions were once I returned. It felt like everyone was moaning on and being negative, and the last thing I needed was negativity in my life. I worked hard to stay patient with it, to remember that it’s not all about me, to respond to the virtual invitations and connections offered, and to force myself back into a space that has provided me such support over the past few years.
I keep using the analogy of learning to swim with social media – you can’t really ever understand it, get it, or do it until you jump into the water. You can read, you can watch, you can study, you can question, but until you get in the water you won’t fully experience what it has to offer. When Dad was dying I spent a lot of time at the edge of the virtual pool and it took an immense effort to trust myself to dive back in and commit to it, it would have been easier to just stay close to the edge, or to give it a little time but then walk away, after all a lot of the interaction was so futile.
Yet it’s not, it might look like it is from the edge, but the very real and genuine connections and support I’ve received from a number of different people has reignited the value of social media for me, and I’m back there swimming lengths with the best of them….now if only that would translate to an actual swimming bath 
Future
Finally I wanted to reflect on the future. I’ve been really keen to raise awareness of the fantastic support we received from our local hospice, Rowcroft, and particularly their Hospice at Home service. To that end an extract from one of my blog posts features in their latest newsletter and on their website. I hope that by sharing our experience people will realise what is available to them, will find comfort and hope for what may lay ahead for them, and members of the local community may even dig into their pockets and provide some monetary support.
I’ve also been taking the time after Dad’s death to consider my own future and what it might look like. I’ve created a Pinterest board titled Work Less, Live More that includes my quasi bucket/to-do list. Take a look and let me know if you want to join me on any of the activities and please do feel free to suggest others.
101 days without Dad has sharpened my focus and enabled me to address issues of balance in my life. I’ve not felt as optimistic about life, or as creative or energised for a long time. Life will never be the same, but I have no intention of ‘getting over it’, rather living with his memory and tuning in occasionally to his voice in my ear, encouraging me to stretch myself, take risks and enjoy life to the full. I’m finally learning to Let it Go.
Taking Care Further – Hospice at Home
So much has happened in the last week that I would like to blog about but one of the side effects of grief that I hadn’t fully appreciated is my complete inability to concentrate on anything for more than two minutes! Given this current affliction, that I’m confident I will recover from in time (probably about the same time I start sleeping through the night rather than waking up and listening for noises) I am not going to blog about Dad’s death just yet, not in detail. I’m also not going to blog about how I’m left feeling, not yet, but I promise I will in time.
The one thing I didn’t want to wait too long to blog about was the absolutely amazing and life changing support that we received as a family from the Hospice at Home service provided by Rowcroft, our local hospice. I’m going to try to explain a little about Hospice at Home, how we came to meet these phenomenal people, and the difference it made (all in spurts of two minutes concentration). When Dad received his terminal diagnosis I suspected that we’d be involved with Rowcroft in some way, but never could I have predicted quite what a difference it would make.
Dad had a two week period as an inpatient at Rowcroft towards the end of his life, this happened once he actively decided he wanted no further treatment from the medical team at the local hospital. Before that he had met a number of social workers from the hospice and the one that made a lasting impression on Mum was Lynne (she never stops talking about how lovely she is) and he had also been receiving support from a specialist nurse, Tracy, who did a great job of coordinating the different aspects of Dad’s care, of coming out to the home to visit my folks, and of generally managing to focus on what Dad wanted and how we could all work together to achieve that. It was Tracy who arranged his inpatient stay and it was following her visit to see Dad at home a couple weeks later that the Hospice at Home service arrived in our lives. We’ve a lot to thank her for.
The Hospice at Home service does it exactly what it says on the tin. It is available to patients in the last two weeks of their lives, and it provides them with invaluable support to enable them to remain in their own home. It was only after Dad left the hospice that he decided he wanted to die at home. When we had discussed it previously he wasn’t too keen, I think both him and Mum (and I would have been too if I was asked) were a little scared about how it would work, and I know that Dad told me he was worried about having bad memories associated with our family home which has always been such a happy place. I can reassure you that our family home has only been enriched by the memories we have formed in the last two weeks, and the people who we have met and who became a part of our family for that short period; I believe that Dad had a fantastic death, there were ups and downs and some scary moments, but Dad wouldn’t have had it any other way. Dad lived his death much the same as he lived his life, and his illness – with a stubborn determination, a sense of humour and a positive mental attitude – all in his own way. The Hospice at Home service* enabled that to happen.
Dad died on a Thursday morning and we had someone from Hospice at Home with us 24-7 that week. We nearly bit the Sister’s hand off when she offered us someone to do a nightshift that Saturday. Dad had been getting worse since the previous weekend and we were all exhausted from lack of sleep, we had brought a baby monitor which meant we didn’t need to be sat in with Dad all the time, but by this point it was beginning to be a mixed blessing because it meant we were constantly up in the night when Dad was coughing or dreaming! The first night Mandy stayed, she came with her own hot water bottle and blanket, she walked into our home having no real idea of what she’d find and she just fitted in. She was professional and polite but had no airs or graces. She was amazing with Dad (who was still awake some of the time then), patient and interested with Mum and myself, and friendly with the dog and cat. That night I was on my best behaviour and went to bed intending to keep out of her way….but it didn’t last, I was awake twice in the night and popped in to check Dad and Mandy were ok and I can’t tell you how ok it felt to be wearing my PJs in front of someone I’d met less than 12hours earlier!
That was a theme that continued really, both me in my PJs and the comfort and ease at having these people in our family home. Mandy covered the first night, Mum and I managed Sunday day time on our own but were relieved when Tracie arrived for the second night. At this stage Dad was declining quite a lot and it was a big relief to goto bed knowing there was someone with him – nights and weekends have always been the hardest and it made such a difference to know that there was someone there looking out for Dad and to provide support for us if we needed it.
From Monday we were lucky enough to get 24 hour care and support. Monday morning saw Jane come, Monday afternoon-evening was Elaine (that was the Spotify night but that deserves a post in its own right another time), Monday night was Lisa. Tuesday morning Jane was back and she persuaded me to goto work for my leaving do (with Mum’s encouragement too) as it was what Dad would have wanted (he’d told me as much the week before) – at this stage I was fairly convinced that Dad wouldn’t die if I was with him so I completely expected he would have died by the time I got home (I was out for 90 mins – another blog post required for my amazing send off – another time) but he hadn’t and that felt like a huge weight had lifted.
Tuesday afternoon-evening saw Chris come into our home, by this stage I was seriously frazzled and couldn’t believe Dad was still with us – it was my cousin’s birthday the next day (Dad’s favourite niece – not that he ever had favourite’s you understand) and I was desperate for him not to die on her birthday; Chris was very patient, almost zen like and she simply pointed out that Dad would go when he was ready. I felt ridiculously guilty at the time, thought she must have thought I was some awful daughter wishing him away, but it really wasn’t that. Dad surprised us all anyhow because he lived past her birthday. Tuesday night saw Mandy back again after a few days off, Wednesday morning was Karen’s turn, Wednesday afternoon-evening Chris was back again and Wednesday night Mandy completed her hattrick. Dad died at the end of Mandy’s shift, she was due to leave at 7am and he died just before with Mandy and (blonde) Sister Sue with us. Lovely, lovely Elaine was due to be back with Dad on Thursday morning, she had shared our playlist hijinks and I think she had seen our little family at it’s most mad, and she made him respectable for the undertakers and kept us all company.
In addition to the people I’ve mentioned above we also got to meet the two Sister Sues (one blonde and one brunette), Sister Anne and the legendary Sister Clare whose reputation preceded her. Clare’s staff raved about her, I’d done some internet digging and knew that Clare was special, and most importantly Clare was on the poster at the bus stop outside Torbay Hospital – Mum have regularly seen that poster but never had we appreciated what a difference the service would make. When Clare visited she told us a little of the history and that she had been involved with Hospice at Home since it’s inception, we have a lot to thank her for. Night sister’s have drivers and the whole service is coordinated by Teresa during the day and I’m sure there are lots of bits of it that we don’t understand but we are grateful for none the less.
This post doesn’t even begin to tell the full story, it doesn’t really speak about what these brilliant people did, they gave him medication, kept him comfortable, changed his position, washed him, joked with him, spoke to him, calmed him, held his hand….the list goes on. What they also did was support his family members and friends and share the experience with us, by being part of it but also by sharing themselves. We learnt about their families and friends, previous experience, reasons for doing the job they all do, bits about their childhood and upbringing – it could easily have felt like an onslaught of strangers in and out of our home, but it didn’t to me, these were people who were sharing in our journey and sharing themselves with us. Really, really special.
I’ve raved about the support we received to a few people and most people respond along the lines of ‘Glad to hear it, but wouldn’t you expect that from a hospice’? Quite simply no, there is a world of difference between what you hope for or what you expect and then what you experience. So often since Dad has been ill we have had our hopes and expectations dashed – usually by a poorly under-resourced system rather than any individual – but no, I couldn’t have hoped or believed that the support we received would have been as good as it was. Rowcroft’s support, and particularly for us the Hospice at Home support, really did take care further. I really couldn’t have wished for a better death for my Dad, or better support for us as a family.
We’ve requested donations in lieu of flowers at his funeral for the Hospice at Home appeal, and watch this space I can imagine there will be a few more attempts to raise funds or awareness over the coming months.
*I’ll write a blog post another time with other people who played a pivotal role such as the Community Equipment Service, the District Nurses and Dad’s amazing GP (and his equally lovely secretary) – it really was a team effort.
JANUARY 2013 Update: I’m delighted to share that the retiring collection at Dad’s funeral raised £911.03 for the Hospice at Home Appeal.
I’m also honoured that Rowcroft Hospice have featured an extract from this post in their newsletter to help raise awareness of the fantastic work that they do.
If you would like to know more about the hospice, their amazing services, or would like to make a donation yourself please visit their website by clicking here.
Lest we forget
Remembrance Sunday has always been an important day in the Julian family calendar. For as long as I can remember Dad was involved with the Devon Army Cadet Force, most of the year this meant regular panics on a Monday and Thursday evening as Dad hunted high and low for the twisties, part of his uniform that pulled his trousers together…this hunting was made far harder once my little sister also joined Cadets and the two of them would pinch each others.
From early October attention would change to bulling boots. I once made the mistake of ribbing Dad about why it took him so long to polish his boots and was given the full lecture and demonstration – take my word for it bulling boots is not the same as polishing shoes. Dad would spend hours and hours every afternoon for weeks polishing his boots to a shine, we’d come home from work to see him cloth in hand polishing and he’d polish until you could see your face in the reflection. Hours he’d spend doing it, after all if a job is worth doing it’s worth doing properly. Once the boots were suitably polished they’d be proudly worn, with full dress uniform and medals, down at Torquay Cenotaph on Remembrance Sunday.
Last year I took Dad down to the Torquay Cenotaph for the Remembrance Parade, at the time I couldn’t believe that he was still with us and I never would have believed that he would be around for this year’s Remembrance Sunday. My Dad was such a man of stiff upper lip, he was always so strong and I remember so clearly that the first time I ever saw Dad cry was when watching a Remembrance Service. My sister reminded me this morning that was the only time we saw Dad cry, except when our dogs were put to sleep.
Last night as Mum and I sat down to watch the Royal British Legion Festival of Remembrance Dad had a coughing fit as the National Anthem was played, clearing his throat to stand to attention I reckon. We had a lovely nurse from the hospice in staying last night, and this morning Dad is still peaceful. I’m wondering whether he’s waiting for the Last Post so we’re going to take my laptop up for the BBC service from the Cenotaph at Whitehall and leave that playing. It would be quite a fitting day for Bobby to say goodbye, if he’s ready.
One thing is for sure, we’ll never forget.
Dancing the cancer dance
Sometimes I wonder whether there is something wrong with me. Given how much time I have spent in hospitals, and increasingly in our local Accident and Emergency Department, I’m not sure which bit of my brain still wants to feast on hospital documentaries, but I just can’t stop watching 24 Hours in A&E. I tend to record it and watch it when I feel able for it, and tonight I watched an episode from a couple weeks ago that just felt uncannily familiar. It focused on a lady called Josephine who was terminally ill with cancer, who was admitted to A&E with severe breathing difficulties caused by a bacterial infection. During the episode the consultant caring for her had to have the conversation with her (and her family members) about whether she would wish to be kept on life support if she needed intervention for her breathing if her condition were to deteriorate. She chose not to, something that I suspect came as a little bit of a shock for her family members.
They showed her daughter, Jackie, reconciling herself to her mum’s decision and discussing it with her niece and her partner and then she said something that cut through me like a knife, because she used words I’ve heard myself use. She said she couldn’t go back into her mum with red eyes (from crying) because she can’t let her think she’s given up on her. Throughout the episode you could see Jospehine’s daughter willing her better, I was torn between thinking she could go easy on her mum and that she was almost putting pressure on her to stay alive, and recognising myself the impossible situation you find yourself in knowing that if you show doubt you are giving too much away to your parent. There is a very real fear that if you stop believing in them, then they’ll stop believing and die. I don’t think the fear is of them dying in itself, so much as them dying prematurely because they are exhausted and you haven’t convinced them to keep going. Jackie also said something else I’ve muttered myself before, ‘Not yet, it’s too soon’.
I have danced that dance many times. It comes up regularly, although often the tune is slightly different! Should I stay over at my parents to enable my Mum to get a good night’s sleep or does that signal to my Dad that we both think he is more poorly than he realises; should I go on holiday/take the weekend away that has been planned for months and risk Mum being on her own if he deteriorates quickly and maybe not seeing Dad again or do I stay home, play it safe and show my inward concern to him; should I go and get medical help when his breathing starts deteriorating even when he is on oxygen in casualty, or does that make him panic. It is really hard to know how much encouragement to give someone, and when you are applying pressure to them, rather than supporting them reach an equilibrium again.
We are very lucky that Mum and Dad had a conversation very early on when he received his terminal diagnosis, with a nurse from the palliative care team. Dad signed a DNR last May and has had a treatment escalation plan written out since then. Mum keeps it in their hallway, by the phone, so we can flash it at the ambulance personnel whenever they arrive – and they always seem as relieved as we are that it is written, plain and simple, in black and white what intervention is appropriate. It got me thinking tonight perhaps we should all have conversations about what sort of life support we’d want if the need arose, rather than waiting until it is needed.
But I digress, this episode of 24 Hours in A&E featured a lovely nurse, Abbie, who was reflecting on caring for a terminally ill parent. She said:
“It would be my worst nightmare to have to look after one of my parents, if they were passing on. Here’s this person that you love so much, who brought you into this world, you know, they nurtured you to an age where you can finally start looking after yourself. They put you through schooling, you know help you get your first job, they help you do absolutely everything, every time you have a break up you always ring Mum or Dad crying, and I just think for the tables to be turned, where this person who you just think is the most amazing person in the world, is now lying in a bed, and their life is slowly coming to an end, and now you’re the one to look after them and try and nurture them and make the other end of life a little bit better, that must be just, it would be just so sad, but then maybe in a more positive way you can kind of give back what they gave you”
Josephine stayed in hospital for seventeen days. She died at home two weeks later on the 28th March 2012. I hope that by the time Josephine died, Jackie felt that the time was right. It must feel impossible to give up, but in a way I think you know when is right. I very much hope that I get the balance right between being optimistic and realistic, between coaxing and believing, between providing support and providing pressure. In the end I’m not sure it matters once we are all doing our best, as someone else said in the episode there is no real preparation for cancer and dealing with a terminal illness, I guess you just do the best you can.
This week has been a tough one, Dad was taken into hospital on Monday, there were no beds so he couldn’t be kept in so I took him home at about 7pm. We were back up to meet his consultant on Tuesday where he agreed that Dad should come off the palliative chemo he had been receiving. This is quite a signifiant decision really, but Mum and I reflected afterwards on how abrupt an ending it felt. There is no more treatment, Dad was first offered chemotherapy this time last Spring, he kept declining the offer until this Easter when he was so poorly we all thought he was going to die. The next time he was offered it he took it and he has been receiving it ever since.
For anyone who isn’t familiar with chemo it really does take over your life, the appointments, the drugs, the nausea, the infection risk, the tiredness and fatigue, the infections and other side effects. It has taken a gruelling toll on Dad’s body, which I guess isn’t too surprising given that it is effectively poison he is being given. All of that said, before he started chemo his tumour was bleeding so heavily that he couldn’t last a week without a blood transfusion, the chemo has worked some magic and despite all the other side effects, touch wood, for the moment the bleeding does seem under control. My sister’s second child is due in a couple of weeks so if all goes according to plan Dad will become a Grandad for the second time before he leaves this world.
On Wednesday we buried my grandfather, another reminder of the finality of life if any of us needed one. There was a definite sense of dress rehearsal to the event, it prompted many questions about what Dad would wish when the time came. Dad side-stepped most of this chat, with the occasional banterful comment thrown in, and when I saw him today he was still joking about what he would (or rather wouldn’t) want to wear for his funeral. My emotions about Dad’s situation swing fairly regularly from gratitude to despair, although most of the time they sit fairly in the middle at exhaustion.
As I watched the episode of A&E I think what I realised is that programmes like that make it all the more normal. Let’s be honest it is not normal to make banter about or so regularly to discuss funeral arrangements with your parents at my age, it is not normal to be up till the middle of the night in A&E departments patiently waiting for a bed, it is not normal to continue with the trivial every day matters when seconds earlier you were contemplating the fragility of life…and yet it also isn’t as isolating as it can sometimes feel, there are hundreds of people who face the same reality as us, each and every day. I guess cancer throws out any sense of normal, you readjust and live your lives with a different barometer, you dance to a different tune, and in the end you do your best, it’s all anyone can ask for.
Goodness and mercy all my life, shall surely follow me
It was my Grandad’s funeral today. At 1pm sharp we walked into the Church where he sang as a boy. The 1pm sharp bit was quite lovely, Grandad was a man of orderliness, you could set your watch by the time him and my Gran sat down for dinner, at 1pm every day. Today it was not a Granny dinner that called us together, but a celebration of Grandad’s life. The Church was busy and lots of people hang around for refreshments afterwards once we’d been up for the burial.
The chat beforehand was that they’d be ‘no piping the eyes today’, a stiff upper lip was attempted by all but managed by few. It wasn’t so much the loss of my Grandad that hurt, he was a lovely man who’d had a full and fabulous life, but seeing my Gran follow his coffin out the Church was lip quivering for the best of us. They met in the Church youth club 80 years ago and had celebrated their 71st Wedding Anniversary last month. The other thought I couldn’t shake, and haven’t been able to shake for the last few weeks, is that this really was some sort of dress rehearsal for Dad. He was joking with the undertaker at the graveside and promised to avoid fat ladies singing for the near future. Here’s hoping.
Goodness and mercy all my life, shall surely follow me. And in God’s house for evermore my dwelling-place shall be.
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.
A carer’s skill set
I was going to write a post about my Mum for carer’s week but found this one that I wrote last year so thought the general introduction to how amazing she is, was already done. So then I wondered what would be most useful and thought I’d reflect on the #swscmedia discussion on twitter the other night. I thought I’d focus on identity and skills of being a carer, as I observe in my Mum. If I had more time, and she was less busy, I’d have sat down and discussed this with her more fully to check I was being balanced, but given the pressure we are both under at the moment I didn’t get around to that, so big fat disclaimer – this is my view, of my Mum. Therefore it might not represent her own experience.
A small bit of context, my Mum lives with my Dad (who is terminally ill with cancer) and they both live next door to my grandparents who are in their 90s. She took early retirement five years ago and has been a full time carer on or off ever since.
What follows is a list of the roles she regularly performs as a carer, and the primary skills that she either needs and/or demonstrates in that. They’re in no particular order:
Provides company and social support – communication skills, empathy, recognition
Dispenses medication (about five times a day) – logistics and planning, time keeping, the handing the pills over is the easy bit
Transport to the doctors/hospital – chauffeuring/taxi driving, diary management, social/moral support
Accompanying into doctors/hospital appointments – logistics (often hard because most appointments run late, which is a nightmare if you have an appointment later that date, or with another family member) note taker, facilitator, advocate, debater and synthesiser
Follow up appointment maker – diary management, logistics, note taker
General health monitor - this means reminding my Dad to take his obs regularly, noting down the results, UN ambassador grade persuasion skills when it is clear that something is wrong and medical help is needed, advocate and general social support
Emergency admissions to hospital – decision maker, logistics, communicator (and increasingly she finds it hard, Dad has had to be admitted by ambulance three times recently, on every occasion he has been admitted, her sense of being a nuisance grows by the call), advocate, history/narrative sharer
Keeping people fed – planner, shopper, cook, dish washer (usually runs concurrently with dispensing medicine)
Keeping people informed - communication, empathy, patience, storyteller (everyone wants to know the same details – lots – and it is incredibly draining to have to tell the same story time and again, especially if it is complex and not a particularly happy story)
Advice and opinion – finder and synthesiser of knowledge and experience, communication, advocacy, opinion, debate
No advice, no opinion, just listen – hold back on what known, listening, empathy (often it is hard to know whether someone wants this or the previous point and it is quite a skill in being able to switch between the two within a conversation or situation)
Banker - ordering financial affairs, banking, accounting, managing benefits or grants
House alterations – planning, project managing, overseeing
Researcher - finding knowledge, assessing knowledge, synthesising knowledge and being balanced about it (I have worked hard to convince my Mum to be discerning when using the internet, she isn’t bad, but it took her years to hone her skills – as it would any of us, and there’s a lot of rubbish to sift out)
Philosopher - offering balanced and rational perspective, listening, philosophising
Co-ordinator - above all else the need to coordinate, arrange and balance all of the above, especially if you care for more than one person.
This is by no means a complete list, it is what is on the top of my head. The skills of logistically arranging everything, and speaking all the different professional lingo, and switching between, while advocating for someone else is a completely undervalued skill set. My Mum is phenomenal in her ability to juggle all these different elements, I’ve never met a multi-tasker like her, and I am in complete awe of her ability to do all of this while most of the time maintaining a positive outlook. Sometimes her outlook isn’t positive, it’s bloody gloomy, but I think that is only a rational response to the situation.
If you know someone who is a carer ask them about their life, ask if there is anything you could help with. I’d almost guarantee that they’d say no, they’re just fine. That may be the case, but tomorrow they may not be. Certainly my grandparents and Dad’s health has fluctuated over time, some days everything seems manageable, others it feels like the planets are colliding to conspire against us. Caring is one of the most thankless tasks, yet without it our society would grind to a halt. There are a whole army of carers who just keep the world ticking over, without most people knowing they are even doing so. Sometimes knowing someone else gives a toss is enough. Don’t be afraid to ask a carer if they are ok, you might not be able to support them or fix things in any way, but my odds are on just asking will help more than you realise.
ps My Mum is far more than a carer, she (some of the time) has her own life, her own aspirations and interests. Having re-read this I wanted to clarify that this is just some of the caring tasks she performs, it’s not all of them, and it’s not all she does – in fact she’s a one woman whirlwind who never stops doing. I thought it was an important point to clarify as I don’t think we should define carers by their caring role (unless they wish to do so) and this wasn’t meant to do that, more advocate and share some of the skills that this hidden army display!
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.
