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Posts Tagged ‘faith’

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.

Don’t give up the ship, fight her till she sinks #cancer

March 29, 2012 3 comments

Ten days ago I wrote a blog post The beginning of the end? that reflected on my Dad’s journey/fight/life with cholangiocarcinoma (bile duct cancer) over the past four years. Well ten days on and things seem to have progressed even further. In March alone Dad has had three blood transfusions, which equates to about 8 pints of blood. I’ll not rant about it now (I’ve done so before here), but if you don’t already give blood please consider doing so, your generosity may well have saved my Dad’s life this weekend – seriously, thank you.

About a week or so ago @markofrespect posted a link to an article ‘16 Manly Last Words‘, as I sat waiting for a train I had a look and one image struck a chord with me, the one below. My Dad is a Navy man through and through, despite having left years ago before I was even born. This expression though just summed up an awful lot for me about my Dad’s phenomenal attitude to dealing with his cancer – he’s never given up the fight and so far it’s stood him in good stead. I promptly emailed the photo to the digital photo frame that my brother got my folks for Christmas that sits in their kitchen (an amazing invention – worthy of a blog post in itself another time).

At the weekend Dad was rushed into hospital, blood tests showed his haemoglobin level had dropped to 6, his lowest yet. He was in there for two days and received the most blood he’s had in a single transfusion. We were told in no uncertain terms that his situation had significantly worsened (when Dad referred to it as a minor hiccup the doctor retorted that unfortunately this was no minor hiccup, it was a substantial deterioration) and that it was touch and go (this was the first occasion when we all actually rushed to his bedside – my sister was home anyway and my brother came down once he realised how serious it was).

Reflecting on it my favourite piece of language was ‘something spontaneous could happen at any time’ – it just conjures up a brilliant mental  image for me, my Dad is quite a joker and I love the idea of this actually translating as him jumping out of bed and spontaneously causing mischief. The reality was far from that, he wasn’t jumping anywhere and the truth is that he has a (still being debated whether it’s primary or secondary) tumour in his stomach that is bleeding and causing the substantial blood loss. He had an endoscopy last week in the hope that it would be a stomach ulcer that could just be zapped to stop the bleeding. Unfortunately not, it’s a dirty great big tumour and like an overflowing sponge it is oozing blood, so no amount of zapping will stop that.

Dad came home on Monday night, Tuesday his consultant and care staff had a multidisciplinary meeting, today he was due to have a contrast scan but after five attempts they gave up trying to find a vein and did the scan without contrast. Which meant it was no use anyhow. We had an appointment with Dad’s oncologist this afternoon, the waiting was awful, he was running over an hour late (why, oh why, oh why, do hospital managers/planners/whoever allocate 15min slots for patients with such serious situations – we’ve never yet seen him running on time), Mum and Dad were both anxious, as was I but luckily I had my work email to distract me! The oncologist was just able to confirm all that we didn’t want to hear (but almost certainly understood since this weekend), what really sucks is that there is no guaranteed treatment that will help (we already knew Dad wouldn’t recover but you never give up hope that something can be done), on this occasion Dad has opted for chemo. Last May I wrote a blog post To chemo or not to chemo where I described the situation when Dad was first offered chemo (this time round) – at the time he decided that he was symptom free and would not have it, preferring instead to enjoy the Summer without it. I felt 100% certain at the time that was the right call, I hadn’t really wanted him to have it, we knew it wouldn’t change the eventual outcome and it felt silly to bring that upon yourself. For me anyhow, for some reason, today it feels different; Dad is no longer symptom free, in fact he may not have many hours/days/weeks left at all, the chemo has it’s own risks and may in fact quicken his demise, that said I think it also affords him a sense of control, an action that he can take in the face of such magnitude. He is hoping to start next week.

This may have been a gratuitous use of a polar bear photo! (cc) Flickr by Gerard Van der Leun

After his appointment we went home and sat in the garden with a cuppa tea (like all good English folk would in such a terrible situation)! We were talking and Dad likened it to standing in the ocean on a block of ice. You know that the ice is going to melt anyway, so you can either wait until it eventually melts and you fall into the ocean, or you can make your choice and dive head first in. I guess whatever the outcome by choosing to dive in, Dad feels like he is fighting, he is looking this shitty situation in the eye and fighting to the end. I am humbled by my admiration for him and my Mum, they truly are inspirational in their attitude, in the face of such inevitability. I’m proud to share this experience with them and ready to do all I can to keep the ship afloat for as long as possible.

The beginning of the end?

March 19, 2012 10 comments

Tomorrow is my second blogging birthday, at the time I started to blog I really didn’t know whether I’d enjoy it or what I’d talk about. I knew that I’d have some stuff to share though (never really short of an opinion) and I also felt that cancer would feature in these posts….I’m not sure at the time I thought it would feature as much as it has (in my life or my blogging).

My Dad was diagnosed with cholangiocarcinoma, bile duct cancer, in September 2007 just a couple of days after his 60th birthday. Up until this point he was a picture of health, he was a postman and walked miles every day, he volunteered with the Army Cadets out on the moors or the parade ground, he walked my parents dog, he didn’t smoke (hadn’t since us kids came along – so 30 odd years) and he rarely drank. It was a complete punch between my eyes when my Dad was diagnosed with cancer, his own mum had died shortly before (having lived into her 90s) and my Grandad Stan (Dad’s dad) was still alive, also in his 90s, so there was nothing to suggest my Dad should be getting a cancer diagnosis. It just didn’t make sense….although I now appreciate it rarely does.

At the time Bobby J was diagnosed with cholangiocarcinoma he was told a couple of things that were very hard to hear 1) that his cancer was exceptionally rare and therefore not too much was known about it’s projected development, treatment or Dad’s prognosis; 2) that he’d be very lucky to live long. I’ve blogged before about what has happened and about my experiences, and as far as I see them Dad’s experiences of fighting this disease – I added categories recently so you can see the most recent posts by clicking on ‘cancer’ in the top right of the screen.

In a nutshell Dad shouldn’t have lived long:

  • he had very complicated surgery that the odds of him surviving were very low – but he survived
  • he had chemo that had horrendous side effects – so he finished it early but survived
  • he has had MRSA numerous times – which he has defeated on every occasion
  • he was misdiagnosed with swine flu when he actually had an abscess and septicaemia – and he survived
  • he has been told he has months to live on at least four occasions, but he is still here 4.5 years later.

Image

Today it feels like things have taken a turn for the worse. Dad has been anaemic for a while now, he has had a couple of blood transfusions and his haemoglobin is dropping dangerously low. Today he went in for an endoscopy, hoping that as part of it whatever was leaking would be found and sealed, but instead they discovered another tumour in his stomach. We’re not sure yet what this means, we’ve known he had more than one tumour for some time, but in some random way it still feels like a surprise that they’ve found another problem.

The local NHS staff have been amazing, the specialist cancer nurses have made Mum and Dad’s lives much easier, especially in the past few weeks. It is really hard to describe how it feels, to know that Dad is terminally ill, but also that he has been for years. It makes it quite hard to know how to take each episode of ill-health. He has consistently beaten the odds, I’m not sure any of us know how to address the possibility that he actually wont beat it this time, mostly because Dad’s ability to beat things seems so inextricably linked to his positive mental attitude. It’s not that we don’t all recognise that he is terminally ill, it’s just hard acknowledging that when Dad seems to cope by refusing to accept or believe the reality.

Now the waiting game starts again, Dad had a blood transfusion after the endoscopy so he is currently full of energy and relatively optimistic. The multi-disciplinary team are going to discuss his case tomorrow and then one of the specialist nurses, or the consultant, will contact Dad to let him know what they recommend. I’ll keep you all posted but for now I wanted to just therapeutically rant and hit the keyboard. Mission accomplished. Thanks for reading.

We shall not cease from exploration

January 2, 2012 4 comments

It’s almost nine years ago that I had my PhD Viva, bits of it I remember like it was yesterday, lots of it I couldn’t recall if my life depended on it. In fact, if I’m really honest I think I could say the same about my PhD itself. I was reading a news story recently about a special school in Oxfordshire and I couldn’t recall why the name rang a bell, until I realised it had been one of the schools I visited as part of my PhD research. It was one of the schools I spent a week in, conducting observations and making fieldnotes, to complement the mass of interview data, questionnaire survey data, census data and additional fieldnotes and documents collected for document analysis. Despite that, it was lurking in the distant realms of my mind; at the time if you’d have suggested I’d forget the names of the schools I’d studied I’d have laughed it off, as a truly ridiculous suggestion, these schools had featured so heavily in my life for four years, I’d spent more time looking at and thinking about them than I had anything else in life.

Yet as I sit here now I couldn’t even tell you the names of all the schools I studied. I guess hindsight is a wonderful thing to have, and to some extent given my time again I’m not sure I’d change anything, but I do think I could have taken a lot of pressure off myself if there had been a few more people to let me know it would be alright; to reassure me that these details while hugely important to me, and my sense of integrity that I presented them well and accurately, were actually not really the point; that most people don’t bother with the detail; and that in fact no-one except myself, my supervisors, external and internal examiner would even read the damn thing (I always thought my Mum had, but I’ve never actually asked her outright and I don’t want to know the truth now to be honest)!

So why am I rambling on about this now? Well in my twitter stream today alone there have been tweets about people trying to finish their PhD, or approaching their viva and I know at least one person who is working hard to make the minor corrections required after their viva. I’m not suggesting for a moment that those people need to hear my thoughts, or will pay any heed to them (if indeed they even see them). However, I am recalling my own experience, and how solitary it felt at times, and how good it would have been to know that the weight I felt I was carrying wasn’t unique to me. No-one in my immediate family had been to university before I went, consequently no-one I knew had a degree, never mind a second degree. In one way this was fantastic because it meant a distinct absence of pressure, I had no-one to live up to, in another way it meant I had no-one (other than the few fellow students I’d once shared offices with) to compare notes with and only my own expectations to live up to.

One thing struck me about the day of my viva, a comment from the person responsible for postgrads. She was one of the lecturers in my department (who I’d not seen in years and who didn’t really know me at all), what I remember is her breezily calling down a corridor ‘You’ve got your viva today haven’t you? Make sure you enjoy it’. The woman was quite clearly insane, something I’d long suspected as she was a sociologist who appeared to pride herself on her dress sense as much as her research (I’m just being honest, I was young and had a thing about sociology because my friends who had studied it had ‘seen’ exam papers as undergrads….yes they actually got their papers weeks in advance to prepare for; probably quite inspired thinking when I look at it now but at the time it just led to an all consuming begrudgery of anything to do with sociology!). This was an exam, did she not realise that my research millstone far from just hanging around my neck was now starting to choke me, and she was telling me to enjoy an exam. I can’t tell you how ridiculous her words sounded to me.

As I look back now I absolutely understand what she was saying, it just severely lacked context. I’m sure what she was actually meaning was take the opportunity, make sure you get the most out of it, this is the one chance you’ll have to talk to people about your research when they really care. This is probably (let’s be honest) the only opportunity you’ll have to talk to people who have actually read your PhD….and I really wouldn’t expect anyone else to ever read it, it’s three inches thick and full of good stuff hidden in my horrific self-taught academic prose, prose that was encouraged. I was always told I wrote well and yet when I open it now I’m horrified at some of it, but I digress that’s a conversation for another time.

If you are on the final slog of your PhD or Masters, if you are preparing for a viva, if you are wondering why you are still studying for something you started years ago, have faith, listen to those around you (even sociologists) and shout if you need someone to rant at or share your concerns with. I wish anyone who is hoping to finish an academic thesis in 2012, all the luck, support, Diet Coke, inspirational quotes, cake, music, enthusiasm, statistics advice, distractions, religion, pancakes, places to stay, breakfasts, karaoke, toasted cheese sarnies, and above all else caffeine* that they need to get them there. Good luck with it.

**These may not actually help at all, but they are all things that people have acknowledged in their acknowledgements pages over on the Acknowledgers Blog. I’m always looking for contributions so please share yours once they’re done and remember that writing your acknowledgements is the absolute best bit, ever.

Dark days of depression: not bad, mad, crazy or weak, just ill.

November 27, 2011 2 comments

This weekend has seen me tweet twice about football, an almost unheard of situation previously. Today, Gary Speed, the Wales Football Manager died suddenly at his home from a suspected suicide, an absolutely tragic loss to his family, friends and of course to the football community.

Yesterday I heard about a tweet that Stan Collymore had sent, describing his experience of depression, so I tracked it down. You can read it here. It is a deeply honest reflection, written with graphic detail and an eloquence that grabbed me. He talks about the benefits he has found from running:

The running I find really has helped massively, as i’m sure you guys that suffer who exercise find, the tangible release of calm, and “being on top of things” powers your internal dynamo, and keeps the black dog from the door.

Before moving on to explain the feeling when depression takes over, describing his latest experience as:

Around 10 days ago however, I started to feel anxiety, which grew into irrational fear, which in turn turned into insomnia for 3 days (little sleep, and an incredibly active, negative mind), that in turn over last weekend (Swansea v Man United) into Hypersomnia, whereby my energy levels dipped to zero,and my sleep went from 8 to 18 hours overnight … So fit and healthy one day, mind, body and soul withering and dying the next. This to me is the most frightening of experiences, and one fellow suffers i’m sure will agree is the “thud” that sets the Depression rolling.

Stan describes further the impact of depression on him (seriously if you’re still reading just go read the whole thing – it is powerful) and talks about how to support someone:

I’m typing and my brain is full, cloudy and detached but I know I need to elaborate on what i’m going through because there are so many going through this that need to know it’s an illness, just an illness. Not bad, mad, crazy or weak, just ill, and that with this particular illness, for its sufferers, for family and friends who are there but feel they can’t help, you can!

Patience, time, kindness and support. That’s all we need. No “pull your socks up”, no “get out of bed you lazy git”, just acknowledge the feedback the sufferer gives, get them to go to the GP asap, and help them do the little things bit by bit.

That may seem simple but in my experience, and currently as we speak, having a bath, walking for 5 minutes in the fresh air, making a meal, all things that days before were the norm, seem alien, so friends and family can help, just by being non judgemental, and helping in the background to get the sufferer literally back on their feet.

It’s hard to know what to do when you’re confronted with someone who is depressed, it’s hard to know what to say or what to do, but as is so often the case in any of these situations, the reality seems to be that mostly what people require (or at least what Stan is advocating) is time, support, patience and kindness. No judgement, maybe an ear to listen, and a helping hand.

It’s also hard to live with someone who is depressed. To keep trying to get it right, to worry about getting things wrong, to start to feel responsible, to not be able to help, to feel part of the problem as well as potentially part of the solution. Of course the reality is that when someone is depressed they are ill, a myriad of situations and circumstances conspire to make someone ill, it is never the cause of one person, or one circumstance. That said I know how hard it is to remember that, when you’re faced with depression or living with someone in the throws of depression, it is hard to hold onto things you take for granted at other times. I consider myself lucky to have felt depressed, but never to have suffered from depression.

I am very aware of some of the trigger points for my own mental health, and try very hard to keep my life in balance, to force myself to regularly exercise, to have a good diet, and to not get too absorbed into any one area of my life (although work seems to be the constant thing I need to challenge on this regard). That said if I thought I was depressed, or those who were closest to me thought I was at any point, I’d want to be encouraged to seek help and see my GP. I think we still have a long way to go in breaking down stigma around mental health and well-being in the UK, and I know that seeking help can feel like a huge hurdle to jump.

When I read Stan’s post I thought about how I felt when I heard that my Dad’s cancer had returned – and how hard it is for people to know what to say in that situation, I wrote about it here. The reality is, I think we probably worry ourselves so much about saying the right thing, or not wanting to make it worse, that we can skirt around the issue. Acknowledgement, a listening ear, support and patience – that’s what helps, you don’t need to have the right words, or a solution up your sleeve, you have to care.

If you are concerned about someone then try to encourage them to see their GP, and also let them know they can always talk in confidence to the Samaritans on 08457 90 90 90 or email Jo@Samaritans.org. Stan finishes his tweet with:

I hope that if you are suffering, or know someone that does, that a little insight into someone elses experiences might resonate with one or two and give them the comfort of knowing that there are millions out there like us that deal with this reality in our lives.

Remember the statistic, 1 in 4 of us will experience mental ill health – that’s 25% of all of us, depression is an illness and one that can be treated with the right support. If you’re reading this and worried about yourself, or someone you know, remember you are not alone, seek help and things will improve.

Sources of support:

Depression Alliance

Mental Health Foundation

MIND

Samaritans

SANE

(cc) on flickr by Tommarsh – Black Dog of Depression, St Patrick’s Day Parade 2011, Dublin

Cancer survival – the good, the bad and the reality

November 22, 2011 3 comments

The Good

New research published today by Macmillan Cancer Support has shown that in most cases the length of time people survive after a cancer diagnosis has improved dramatically over the past 40 years. Back in the early 70s if you were diagnosed with cancer, the median survival rate (worked out as the time it takes until 50% of people diagnosed die) was just one year; by 2007 this had increased to almost six years (5.8years).

The graph that follows, taken from Macmillan’s report Living after diagnosis: median cancer survival times, shows the change in median survival over the past forty years:

The other thing to consider is that these are median rates, so the time taken until half of all people diagnosed die, therefore many people (the remaining 50%) will live longer than these averages. The good news doesn’t just stop there, some types of cancer have shown massive improvements in survival rates, for example Colon cancer (17-fold increase), Non-Hodgkins Lymphoma (10-fold increase) and Rectum (7-fold increase).

As you can see from the graph above, Breast cancer survival rates doubled in the 70s and in the early 90s it joined six other cancers with median survival rates of more than ten years (since the early 70s) – Testis, Uterus, Larynx, Hodgkin’s Lymphoma, Melanoma and Cervix.

The Bad

It’s not all good news though.

Nine of the cancers looked at had median survival rates of three years or less. Some cancers showed very little or no improvement, with Stomach, Oesophagus, Pancreatic, Brain and Lung Cancer all having a median survival rate of less than a year. Macmillan also point out the limitations of focusing on survival rate as a standalone measure, we obviously also need to be mindful of quality of life.

The Reality

My Dad was diagnosed with Cholangiocarcinoma, Cancer of the Bile Duct, over four years ago (when we were told he was likely to live for three months depending on the success of treatment). Dad was told he was terminally ill last autumn. You’ve probably never heard of Bile Duct Cancer – there are only about 1000 cases diagnosed in the UK each year. Given how rare the cancer is, and how hard these things are to judge, his consultants have always been vague about Dad’s chances of survival, tending to work with estimates and talk has nearly always been about his chances of meeting milestones, e.g.whether he’d reach one or five years.

Dad’s odds of survival have varied throughout the past four years but one thing we’ve always known is that we couldn’t take anything for granted. His determination and fight has been crucial to him living as long as he has – that and the skills and care of the professionals who have supported him. Dad is away on a mini road trip this week, and tonight I popped round for dinner with my Mum and my brother and his girlfriend, in a strange way it was a little like a window into the future. The last time the four of us sat down to eat together without Dad was when he was hospitalised four years ago; as I drove to Mum’s I remembered how horrendous the first year after Dad’s diagnosis was. It’s almost easy to forget how difficult it is now we’re so familiar with cancer, the language, the reactions it gets from people, the options, the frustrations and the opportunity it presents. On balance I think we’re lucky, lucky to have the opportunity to prepare ourselves for the reality of what’s ahead.

I hope this report from Macmillan gives other people hope and perspective. There isn’t very much cancer good news around and this report should prove a cause for optimism for the many people, families and friends who will be touched by cancer. If nothing else, if you’ve stumbled across this post by accident, take hope from our family situation and my Dad’s own exceptional ability to outlive everyone’s expectations. Medians are after-all just average statistics, and someone has to be in the 99% group.

A week of remembrance

November 20, 2011 2 comments

This week has been a week of remembrance for myself and my family and I thought I’d take some time to reflect on it.

Last Sunday Dad and myself went down to the Remembrance Sunday Parade in Torquay. One of the many conversations we had that day was about how little either of us had expected Dad to see this year’s parade. Dad, for anyone who doesn’t know, is terminally ill with cholangiocarcinoma (Bile Duct Cancer). He has had this cancer for four years now and we were told not to expect him to live when he was first diagnosed, this has been repeated many times since and this time last year we did not expect him to live to Christmas – in fact my blog post from a year ago explains my feelings at the time. Dad is my definition of a fighter, he knows he isn’t ready to give up  his fight yet, and a recent blood transfusion has given him lots more energy and as much as I never assume anything these days, I’m quietly optimistic he’ll make Christmas 2011.

The photo is Dad (on the right) and his best mate Pete.

The remembrance didn’t just stop on Sunday though. Thursday saw myself and Mum travel to Wales to watch 1 Rifles receive the Freedom of Chepstow. My brother-in-law was one of the hundreds of soldiers who returned from their tour in Afghanistan in recent weeks and my earlier post Swift and Bold sums up some of my thoughts about my little sister, and all the other wives, husbands and partners who are left behind. About 500 members of 1 Rifles marched through Chepstow and there was quite a crowd gathered to acknowledge their efforts:

The Parade through Chepstow was followed by a Medals Parade back at their barracks, followed by refreshments, before Sounding Retreat and a Fireworks Display. One of the highlights of the parade had to be the Band and Bugles of the Rifles playing Lady Gaga’s Poker Face – if you click on the photo below you’ll be taken to the Audio Boo site where you can listen to this awesome performance:

All of that said, this post was meant to be about remembrance, and we found time to do that too. 1 Rifles lost five men on this tour of duty, one of them left behind a widow, Carla, who was pregnant at the time – she was at the parade with her beautiful young baby, who was born on L/Cpl Jon McKinlay’s birthday. Jon, was the former husband of my cousin, and Dad to her two children. He was also killed on this tour, and Megan and Oliver have raised nearly £2k in his memory. Thursday provided an opportunity to celebrate the safe return of the many, while remembering those who paid the ultimate sacrifice.

I found myself thinking a lot about military life this week, and the sorts of people who choose that life path. I really admire them, I often think about how different my own life might have been if I’d gone down a similar path instead of opting for university and research, that said I don’t think I’d have coped particularly well with the discipline. I think the ability, and freedom, to question is pretty core to who I am and I don’t think I’d last long in a system where that wasn’t the norm. That in itself leaves me feeling even more in awe of those who do choose to join our Armed Forces, and the friends and family who support them to do so. The irony of that statement isn’t lost on me either – I know my own freedom to question, is upheld by the actions of those who have fought to maintain peace and freedom over the years.

On a lighter note, it also leaves me loving a new rendition of Lady Gaga – if you didn’t listen to it earlier, go on, click here, it’s worth it.

Cancer – the price of hope

February 27, 2011 6 comments

Background
A couple months ago I wrote a post about the cost of life extending cancer treatments, Cancer – the cost of no cure. It offered my perspective on potentially life extending drugs for people with cancer, particularly reflecting on my personal experience as my Dad is terminally ill with secondary cancer that started out as cholangiocarcinoma (bile duct cancer). That blog post resulted in numerous comments, RTs and discussions on twitter. I felt so humbled as people shared their experiences with me, offered their professional views and commiserated or challenged my opinion. I am very grateful for each and every person who got in touch and was especially touched by @paul_clarke sharing the fact that his own mother was dying at the time, you can read his fantastic tribute to his mum here (you might need tissues – I did).

Dad’s health
Life has moved on considerably since November and I am delighted that my Dad remains, more or less, in great health. This time around he has still not had any chemotherapy, although he refuses to rule out the possibility of it. It’s not all been plain sailing, Dad caught a cold around Christmas that took him weeks to shift and a couple weekends ago when I went round to talk ‘end of life care plans’ he developed rigors (extreme shakes and shivering sensation for those of you not in the know). I was convinced it was a psychological response to me forcing a conversation that he wasn’t overly comfortable having…..at least I was until mum confessed that he’d had the same thing happen the night before. A home visit from the on-call doctor meant he was prescribed a course of antibiotics and rest – last week he had his bloods back and everything was more or less normal. We’ve yet to have the MRSA results so he’s not in the clear yet but he says he feels much better. I’m currently nursing a cold so have been banished from going over so can’t tell for myself – have to trust my mum’s judgement, which is usually spot on, well spot on with a positive spin.

The Price of Life
This weekend @evidencematters drew my attention to a Telegraph article Cancer sufferers refused life-extending drugs despite Government pledge and a BBC documentary from @adamswishart shot in 2009 called The Price of Life 

I would recommend it to anyone who didn’t catch it first time around, it contains the stories of three patients with Myeloma and the NICE decision about access to Lenalidomide – a drug that may prolong their lives but does not provide a cure. There was much within this film that rang true to me, especially Eric and Anne Rutherford talking about their fight to get the right treatment and how you tire of fighting. We’ve been incredibly lucky in not having to fight for treatment, my Dad is very much of the opinion that the doctors know best and while he might delight in trying to prove their life expectancy predictions wrong, he would accept their judgement on drug options without question. That said there have been times when it has felt like an uphill struggle, a fight to get different professionals to communicate with each other, to get people to take notice, to get incredibly stretched staff to do more or differently – with ever decreasing resources. There in lies the rub for me. The NHS has limited resources and we can not keep expecting more, irrespective of individual’s circumstances.

Milestones
There was a recurrent theme in the comments and discussion around my last post that talked about milestones. How much time did someone need to get their affairs in order; do QALYs account for enough ‘real life’ metrics; is it valid enough an argument that my Dad might want to live long enough to walk my sister down the aisle? To have one last Christmas dinner? To see his granddaughter turn one? You see the problem I have with the milestone argument is that I rarely see human spirit giving up and realising that it needs to let go of long term goals.

When my Dad was first diagnosed with cancer he had just had his 60th birthday, he’d worked all his life as a postman and really wanted to enjoy his retirement. His aim at that time was my sister’s wedding the following June. The reality was that my little sis bought her wedding dress a few weeks after he was diagnosed and given months to live, just in case it was needed sooner. As it happens he survived with the help of lots of drugs, the insertion of several drains and stents, surgery for a partial liver resection, the removal of his bile duct, gall bladder and a large chunk of his liver; he left hospital in March with a VAC (Vacuum Assisted Closure) Dressing and MRSA. He underwent chemotherapy with horrendous side effects and two days before her wedding (in June) he could barely walk. That said nothing was going to stop him walking her down the aisle and walk he did. Dad gave up chemo shortly after, preferring to take his chances.

Fast forward two and a bit years and Dad is a new granddad so when he was called in to see his consultant after a routine scan, we weren’t quite prepared for the news. The cancer was back and this time it had spread, there was nothing that could be done to cure it, palliative care was the only option. This was last September, by now his discourse had changed to ‘one last Christmas dinner’ – his newest milestone.  Dad had a normal Christmas, got the Christmas dinner that he was aiming for and then what. The next milestone was the annual Army Cadet Dinner and Dance, except this year Dad was guest of honour – he has been an adult instructor for almost 30 years and when his cancer returned he decided to retire. At the end of January he had a great night, complete with speeches and tears – milestone met.

The next milestone was his granddaughter’s first birthday – he is now just three weeks away from that and all the signs suggest he’ll be there for jelly and ice cream no problem. Last week he wrote his will and he has started talking to mum and the nurse from the local hospice about end of life care. I’ve been trying to raise this conversation for a wee while but he isn’t comfortable talking to me about it – not sure whether it’s because it’s me, or because it’s such an antithetical thought for my Dad – why consider end of life, that means a head-shift to giving up.

The Price of Hope
My experience of the human mind is that once you give up the fight, your health can decline very quickly. I’m confident that as long as my Dad has something to aim for then those long term goals provide him with focus. That is the problem with the milestone argument – there is always something to aim for and ask a patient why they need a drug and I’m sure they will all be able to identify a milestone and who then gets to judge which milestones are most worthy of recognition?

When I wrote my last post I was somewhat uncertain how I felt – I knew that by publishing it I’d end up questioning my thoughts more. This time, three months on I feel more certain than ever that the real challenge for terminally ill patients and their families is in reaching an acceptance that they are dying and what that means. Yes we need hope, and yes I hope that my Dad will continue to prove the doctors wrong, but I know he will not be able to do so forever. I echo Adam’s sentiments in the film – I’m sure that when the time comes how my Dad dies will be far more important than when. Until then I’ll carry on discussing and debating the realities of my experience – I’m not sure my parents or siblings would feel the same, and I respect everyone’s right to hold their own opinion. At the end of the day I am experiencing this reality as my Dad’s daughter, I can’t begin to imagine how it must feel for him. I only hope when the time comes I’ll face the reality of my own death with half as much spirit and courage as my Dad does.

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