Life after Bobby: the first six months

Today it is six months since Dad died. I can’t quite believe it, one minute it feels like yesterday and the next like it was years ago, six of the longest and shortest months of my life. Time is a funny old thing, especially where grief and loss are involved. To mark the occasion this morning I went for a dawn walk down Meadfoot Beach, one of Dad’s favourite places, and I was there enjoying the view thinking of him at the time he left us.

I’ve been thinking a lot about Dad and loss and grief this week. When Dad first died I started making a list of the things that I’d have liked to share with him, I don’t keep up with it these days and in a way that feels like less pressure. Some days I still catch myself saying ‘Must ring Dad later and tell him about that’ or ‘Wonder what Dad will say about how I should fix X or Y’, it happens less often but it’s like the new neural pathways aren’t worn in enough yet for it to be default. One thing I’m confident about though is that Dad would be proud of us as a family, and particularly of my Mum, for how she is handling life.

I think my Mum is the living definition of resilience at the moment. The thing I think he’d be most proud of is how naturally she has taken to her newest acquisition – an iPad mini. My Dad was a bit of a technology fiend, or would have been if he could have afforded it. He used to love Tomorrow’s World and was a sucker for a new gadget! I remember him coming home pleased as punch with a CD player when they were very first released. Of course he could only afford one CD to play on it for months, but it was the feeling of being ahead of the game that counted for him. I’d held out from buying an ipad mini for the best part of a year (I’m not so interested in being cool obviously), I was waiting for v2 to be released but decided to stop waiting last month! As soon as Mum saw mine she was smitten, and less than a week later she had her own. She’s busy listening to her choir music on it, emailing, shopping, banking and kindling and touch typing like a digital native. Every time I see her use it I feel proud, and get a warm fuzzy glow just thinking of what Dad would say.

It’s not all been plain sailing though, especially the last couple of weeks. Yesterday, we had to have Dilys, my parent’s gorgeous, dignified, graceful and beautiful cat put to sleep. The vet said something rather lovely about Dad wanting his cat back, it made me shed a tear at the time (don’t worry it was a Cheryl Cole one) but it was such a comforting idea! Dilys knew when Dad was dying, she wouldn’t leave his bed the night before and last week she’d started sleeping in the room that he’d died in. We tried everything to get her to eat but in the end she decided herself that enough was enough. I watched on in awe as my Mum dealt with yet another loss with such dignity and resilience.

Since Dad died I’ve been trying to rebalance my own priorities in life. My ‘Work Less, Live More‘ board on Pinterest now has 45 things on it; I’ve only crossed one thing off so far (to watch a live Cross Country Ski race) but there are a glut of things that should get crossed off in the next month! Mum was always complaining to Dad that despite years of serving in the Army Cadet Force he never once took her camping, not properly under canvas. So next month we’re righting that wrong and my Mum, sister, my two nieces and I are going glamping! I can’t wait, I’m sure there will be lots of laughs, reminiscing, new memories formed and no doubt one or two crossed words, but I’m really looking forward to it. I also have a couple of birthday treats planned, more on those in due course.

So, it’s six whole months post-Bobby, life isn’t the same, the Dad shaped hole is still very rough around the edges, but I do think it’s getting easier with the passing of time. Like one of those pebbles down at Meadfoot this morning, the constant rhythms of life washing over us is gradually smoothing the jagged hurty spikey bits away.

Here’s to the next six months of building new memories and remembering the old ones.

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.

Not just a statistic – World Cancer Day

It’s 81 days since my amazing Dad died. He had been fighting bile duct cancer, cholangiocarcinoma, for five years and two months.

Today is World Cancer Day and the campaign is seeking to dispel four key myths about cancer, I hope this blog helps to dispel at least two – that cancer is a disease of the wealthy, elderly and developed countries (Dad was 65 when he died) and that cancer is a death sentence. Dad did indeed die as a result of his cancer but his life was no death sentence.

Current figures suggest that 1 in 3 of us will develop cancer in our lifetimes. Trust me this disease isn’t something that happens to other people, look around, there’s a good chance that at least one of the people sitting with you this evening are likely to face this illness, and it could of course be you. Recent research shows that people in the UK are still too good at the stiff upper lip when it comes to cancer diagnosis – concerns about wasting GP’s time or being embarrassed prevail. If you have any concerns about your health then raise them with a medical professional as soon as possible.

Cancer Research UK estimate that 1000 people are diagnosed with bile duct cancer each year in England, so (very) crude maths suggests that in England alone 222 people have received a diagnosis of bile duct cancer since Dad died. If this blog, or any of it’s positivity about living with and fighting this disease, reaches one of those people or their families then it’s work is done.

NB

Read more about my Dad in his eulogy.

If you wish to know more about life with cancer then take a look at Kate Granger’s blog or Helen Fawkes’s blog – two amazingly inspirational women who are sharing their experience of life with cancer.

Life after Bobby: Month 2

So time moves on, it’s actually ten weeks today that Dad died but I wasn’t really in the mood to blog last week which would have been two calendar months. I can’t believe that it’s two months already, the list of things I’d have liked to share with Dad grows, my sense of his loss is up and down – some days he’s in my mind all the time, then occasionally I catch myself and realise I’ve not thought about him for a day or two.

I’ve allowed myself some time to think, really think, about what I’d like to do with my life from here on in. I feel an immense freedom and there is a considerable part of my brain or psyche that is encouraging me to travel. I think it may be a coping mechanism to some extent, it always feels good to be on the move in some way. Simultaneously it fills me with an excitement and sense of adventure and I don’t think there are many opportunities in life to really reassess where you are at. I’m lucky that the only true dependent I have is Mogs and that I’ve lived a modest enough existence to have built up some savings to afford me time. I’ll blog about this another time but I feels necessary and sensible to take the opportunity of Dad’s death to reassess life. At the same time as reassessing I’ve also been hit by an almost pathological need to de-clutter. It’s like I want to shed things from life, literally and metaphorically. The local charity shops aren’t complaining and I’ve been e-baying some bits and donating a percentage of sales to Rowcroft, the hospice that supported Dad and us.

Mum is doing amazingly, she seems to have sorted all the practicalities and one great piece of news this week was that the retiring collection at Dad’s funeral raised £911.03 for the Hospice at Home appeal. It’s such a huge amount of money, especially considering Dad was a postman – not some executive with well heeled friends. I know he’d be chuffed to bits with that news. I also know he’d be pleased that Rowcroft are going to use an extract from the blog post I wrote shortly after he died, this one, to include in their six monthly newsletter. I feel really privileged that they want to use it, but also hope that it might reassure other people who find themselves in our situation, and maybe even raise some more money for the appeal.

The other thing of note that has happened since Dad died is Christmas. It was hard to have Christmas without him, but probably not as bad as I was expecting. My sister was down at Mum’s with her husband and two children, which made for a grateful distraction. It’s hard to be sad at Christmas when you have a two year old obsessed with presents, giving them as well as receiving them. The one thought I couldn’t shake at Christmas was how lucky we were that Dad died in November. It’s hard to deal with death at any time of year, but two of my twitter friends lost their parents close to Christmas and my heart went out to them, I feel very grateful that we’d had some time to grieve before we had to try and be happy again.

In Summer 2011 Dad built my niece a wendy house in my sister’s garden, every bit of it lovingly hand crafted by Grandad. Last week she posted this photo on facebook, it brought a tear to my eye, but in a good way. Dad would have been so proud to see it in the snow, almost as much as the photos that followed of Libbie on her sledge and with her snowman.

Life isn’t the same without him but I’m glad we’re able to talk about him and remember him, and that he is so present in our everyday lives. To quote Victor Frankl:

In some respects it is death itself that makes life meaningful. Most importantly, the transitoriness of life cannot destroy its meaning because nothing from the past is irretrievably lost. Everything is irrevocably stored.

Life after Bobby: Week 1

I can’t quite believe that as I’m writing this Dad died over a week ago.

He was originally diagnosed with bile duct cancer in September 2007. At the time his odds were pretty gloomy for making Christmas – a very rare cancer, the statistics on cholangiocarcinoma do not make for pretty reading, by the time it is detected it is often too late to do much more than offer palliative care. My Dad was, of course, an exception and chose to fight it in his way. He was never prepared to just accept what he was told, don’t get me wrong he wouldn’t question the judgement of the medical staff caring for him, but he would identify their most optimistic and positive angle and build his hopes on that. This positive approach meant that Dad lived with bile duct cancer for five years and two months, throughout that time he had many medical interventions, he had stents fitted and drains, major surgery to remove his bile duct and resection his liver which left him with a Mercedes Benz shaped scar he was rather proud of, he had complications along the way including MRSA (which was a complete bitch), he had chemotherapy as treatment and later on palliative chemo too.

The upshot of all this is that we knew Dad had limited time, he received his terminal diagnosis over two years ago and he accepted he would not beat his illness about six weeks before he died. Accepting he was actually dying, was not the same as giving up though. My Dad did not lose his battle, he did not succumb to cancer, he did not give up his fight and accept his illness – he stoically, bravely, steadfastly lived his death as he has lived his life, with a positive mental attitude and a concern for others. Dad’s last week was supported by the Hospice at Home service from Rowcroft, this enabled him to remain at home which was amazing and it also enabled him to die his death his way, for which I’ll be forever grateful. Dad didn’t want to die in hospital, he didn’t want to be defined by his illness, he never really was; in my eyes at least he was defined by his approach to his illness, not by it, he lived every last minute of wellness that he could.

A week on life is busy. I think most people have been told, the announcement went into the local paper yesterday but we did also try and contact most people beforehand. Mum is doing ok considering, well I think we all are, there are ups and downs but mostly ok. We all seem to be dealing with the situation slightly differently, which is no real surprise in our family. I was talking to my sister this week (cuddles with my new niece twice in a week – there are some huge silver linings to this situation) and she described it as shocking that Dad had died! There are many things that it feels to me, but shocking just isn’t one of them – but I guess that’s it, everyone is different, and everyone’s experience is different and we all have different coping mechanisms.

My biggest concern is that I’m not patient enough, with anything or anyone. I’m tired, bone tired, somedays feel like walking through treacle, but I know this is relatively normal. The one thing I wasn’t prepared for was the physical ache! It was like I’d been punched in the chest, it’s easier now, and I’m not sure whether it was stress or a strain from crying, but when people said grief hurt I had no real idea that it would be a physical pain. I know mentally and physically there’s been a lot going on of late, especially in the last month, so I’m not too worried and on the upside I have started craving vegetables (and no I don’t just mean crisps), I actually feel like I want to start eating properly – which is something after at least a fortnight of cake and other sugary badness as the ever frequent pick me up. The downside of such a crap diet is that none of the stacks of potential funeral dresses I have fit! I have Dad’s words ringing in my ears ‘What does it matter, it’s not a fashion parade you know‘ and yet it’s important to me, I want to look smart. I’m confident I’ll get it sorted.

The other thing we have to get sorted in the next few days is a eulogy for Dad’s funeral. I discussed Dad’s funeral with him in recent weeks and asked whether he minded if I spoke about him. If I’m honest I almost didn’t want to ask because I was worried he’d say no – he was quite a traditionalist at heart. However he was fine with it, as long as I didn’t go on for too long. I’ve spoken with my Mum and sister, got a few ideas from my brother, hoping to get a few stories about life in Cadets, and have a beginning and an end – it’s just the middle that needs pulling together now.

It’s a welcome challenge to be honest, a great distraction, I suspect the real skill will be required in condensing all that we have into something coherent that really captures who Dad was. The photo that keeps coming to mind is this one, it’s Dad with his PICC line when it was removed a few months ago, messing around and posing for a photo – safe in the knowledge that one day it might make it onto this blog, well here it is and somehow I’ll capture that spirit in words by next week.

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.

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.

Five things I wish I knew when my Dad was diagnosed with cancer

Back in the summer I wrote a post ‘Five things I wish I knew when I collected my A-Level results‘ and it got a great response; that response could have been because it was topical, because it was blunt, because it was a ‘five things’ rather than a deep ramble about one thing, or maybe just because there was something useful in it. I particularly liked the format – so I thought I’d repeat it here and share five things that in hindsight I wish I’d known when my Dad was diagnosed with bile duct cancer (cholangiocarcinoma) five years ago. I know it wont generate the same reaction as the last post but I hope that it might be useful for someone, somewhere. Disclaimer: as ever it’s written from my perspective as someone whose Dad is terminally ill, this isn’t necessarily what my Dad would think at all!

1. A cancer diagnosis changes your life, and the life of those who love you, in an instant but it’s not all doom and gloom

Cancer, the word is just so harsh in your mouth, leaves a kind of after taste. I wasn’t blogging at the time my Dad was diagnosed with cancer but if I had been I’m sure I’d have talked about the shock of it (Dad was a recently retired, fit and healthy, non-smoker, very rare drinker who had a good diet and ticked all the right boxes for a long, happy and healthy retirement) and how finite, gloomy and hard it felt. Quite simply it’s not fair. There were many emotions, inequity and anger were high on the list; there was very little to feel happy or content about – especially with such poor odds, there were no happy stories of recovery; it felt like someone had shut a big door and locked us all into a prison cell of cancer – and we were thrown into it together. That said, that technicolour experience and heightened awareness extends to the good times too; I’ve found myself appreciating the things that really matter, feeling grateful at the start of each day (when you’re not just feeling exhausted – see point two), making important decisions and really questioning whether you’re living your life in the best way you could. It has also meant that causes for celebration, a wedding, new baby, even a funeral, are really savoured, I really find myself grateful for the focus that Dad’s cancer has given us all. Life just feels that much more real, the good as well as the bad.

2. You can spend a long time living/dying (delete as you see appropriate)

My Dad has fought hard to stay alive, that’s the only way I can describe it, a long, thoughtful and determined fight. He knows that he is dying, he knows that his body is fighting itself, he also knows that we all have the greatest admiration for the way he has approached this experience – at least I hope he does. The thing I wanted to touch on though is that you can spend a long time engaged in this battle, or dance, pick which ever metaphor works for you. The cancer becomes the focus at the centre of everything and its exhausting, it’s always present for everyone, not just the person with it. I can’t remember the last time I made a decision and didn’t consider cancer within it; big decisions like quitting my job, moving where I live, disappearing on an adult gap year to find myself (two of these have not yet, and may never, come to fruition) but also more everyday ones like whether to book a holiday or weekend away; whether or not to have a drink tonight or being ever ready to jump in my car and head to their house; whether to walk to the train station or drive so my car is there if I return in a hurry etc etc etc

That level of focus, pervasive focus, is hard to live with. You don’t get much time off from it, I’m sure a lot depends on personality and approach to life but cancer has been ever present for over five years now. For many of those years it has felt like death was imminent, just lurking around the corner ready to pounce. Dad has had a number of episodes where he has recovered from very serious surgery, infections, complications, treatment side effects, there have been so many times when I thought he wouldn’t live much longer. The key learning for me has been the importance of staying connected, of trying to find down time, of recharging and in hindsight there are holidays I wish I’d taken, choices I may have made differently, I perhaps would have been more selfish if I’d known Dad would live as long as he has, but mostly I’d have stocked up on energy in the early days so I had more to draw on now.

3. Take a wallet with change for the parking machines and leave it in your glove compartment

OK, simple one this one, and it only really applies if you’re a driver, but I can’t tell you how much stress was caused arriving at hospital (sometimes because things had deteriorated, sometimes as an emergency, many times as a visitor) only to discover I didn’t have the right change for the parking meter. It took me months to actually get around to addressing this proactively and removing this stress from my life by getting myself a parking wallet! There are also other practical things that make life easier, I keep PJs and a change of clothes at my parent’s house for unanticipated overnight stays, I had a wash bag and new outfit in the boot of my car for the best part of two years – ever ready for the unexpected.

4. It’s a game of chance not science

Sometimes I still can’t quite get my head around this. Years ago if someone said cancer my thoughts and word association would have been: white coat, laboratory, science, macmillan, no hair, chemo drip, death, something like that, all quite clinical I guess (possibly due to my undeveloped and over simplified understanding of science). Now if someone says cancer things are quite different, I’ve realised that it really is a game of chance a lot of the time, one of the images would probably be a handful of dice. That’s not to denigrate the work of the amazing people who have cared for Dad and treated his cancer, but it’s to acknowledge that even with the amazing advances of science, and phenomenally dedicated, passionate and knowledgeable staff, a lot of the time there is no certainty, no science, it’s a more complex and natural equation. There are few certainties, it is impossible to know how Dad’s body will react to the treatment given, how long he has left, how many more times he can fight back from a brink – life, cancer, his treatment really is more personalised than I’d imagined, and with that it is impossible to know or find certainty. So the easiest thing is to accept that these gods and gurus, the consultants, specialist nurses, oncologists, surgeons, healthcare assistants, hospice workers, who offer so much are just mortal like the rest of us, and they can not provide certainty, so I’ve tried hard to stop seeking it.

5. People are inherently kind and good and support will come from the least expected places

Finally, it’s what it says really. My Dad’s experience of cancer and the impact it has had on my life has reassured me of one thing above all others, that people are inherently good and kind. Some people want to fix things, some want to ignore it, some will discuss it and want gory details, others will disappear from your life quicker than Usain Bolt could run 100m, some will emerge from the shadows of distant relationships, some people will find you and new friendships will forge at a really difficult time. My friends, family, twitter network, colleagues have been amazing, not all but on balance most, and the good far outweigh the bad (who aren’t actually bad they just have their own reasons for not wanting to deal with cancer/you/life/death right now).

At times knowing someone you love, who loves you unconditionally, is living with or dying from a serious illness can be overwhelming. It’s quite a challenging thing to face up to and live with. It impacts on nearly everything. I only make plans now with people who I know will understand if I break them at the last minute, I’ve been a fairly rubbish friend (not to mention girlfriend) over the last few years and the last couple of months especially. My capacity has been stretched to a point that I didn’t know it could reach without snapping. It has been, and continues to be, one of life’s biggest adventures and I am beyond grateful to all of the people who make it an exciting and uplifting adventure and not a dark, tragic, disaster movie.

If you are reading this because someone you love has just been diagnosed with cancer, or any other serious illness, know that it’s not all bad. It is unbelievably hard at times, but it is also amazingly rewarding. I wouldn’t wish cancer on anyone but I am humbled by the experience, the support and the learning that has come from this crappy situation. Find people who are positive, look for the good and remember you are never alone…and it’s perfectly OK to have bad days/weeks/months, just surround yourself with people who will walk with you until the good days come bouncing back.

Technology for living

Last week I attended the National Children and Adult Services Conference #NCASC in Eastbourne – I’ll blog about the session I ran later this week, but one of the things that struck me as a theme throughout the conference was the simple things that we could do to make people’s lives easier. I attended a session by Staffordshire County Council talking about some of their new approaches to providing support for people to live independently. It was a good session, I enjoyed the format – using short video clips to myth bust people’s assumptions. That said the thing I took away was the story of the automatic pill dispenser and the impact it had on one of the presenter’s (Emily I think?) grandparents – not high tech, not wifi enabled or encrypted or multidisciplinary, just plain and simple battery operated brilliance.

There were a handful of people who use services at the conference offering their perspective and not too surprisingly none of them were too fussed where their support came from, whether it was health or social care, but they all wanted to live as independently as possible. While I was at #NCASC my Dad was staying in our local hospice, he is terminally ill with bile duct cancer and had been admitted the week before I went away. One of the hardest things to witness is the impact that Dad’s illness has had on his and mum’s independence. I completely related to the story of the pill dispenser and the simple positive impact it could have.

So today I’m celebrating another technological break through…a baby monitor.

This nifty little device allows Dad to be in bed upstairs and whoever is looking out for him to carry on as usual elsewhere in the house – and yet to be tested but hopefully in the garden or next door with Gran.  Mum bought the monitor from Boots this afternoon and Dad was quick to road test it and request a cuppa tea from me earlier, complete with sarcastic comment about whether I’d gone to India to pick the tea when it wasn’t delivered quick enough. He also massively enjoyed making animal noises and scaring the life out of my Mum when she came home – it was one of the first times in a while I’ve heard him laugh, so it was worth it just for that.

It will also be interesting to see whether it allows Mum to sleep easier tonight knowing that she doesn’t need to be listening out for Dad. That said we’ll only truly tell with time, I’m staying at the folks tonight (my brother was there last night) but I’m keen to only stay one night if I can help it…so hopefully the monitor will make that a little easier. We’ll see. Next time I’ll discuss the power of Skype and/or the wifi picture frame, but for now all credit to the baby monitor!