Who owns the conversation? #10minsGPguide

Last night I noticed a tweet from @StuartBerry1. It had been retweeted by @amcunningham – if you are in any way interested in health or medicine, and you’re not already following Anne Marie on twitter then stop now and go follow her (if you’re not already on twitter then you’re really missing out).

Anyhow, Stuart was collating ideas for hints and tips of how to get the most out of a 10 minute GP consult. It’s years since I’ve seen a GP but I have attended numerous doctor or hospital appointments with my parents since my Dad was diagnosed with cholangiocarcinoma (bile duct cancer) five years ago. This blog is full of my version/experience of my Dad’s illness, it’s not his experience or views, just mine so it’s already once removed, and it is obviously heavily influenced by who I am, my world view and my experience. That said, I contributed a few ideas to the GP conversation and there has been a healthy amount of discussion about one of my ideas since.

I shared that on two occasions I’ve used my phone to record conversations with Dad’s medics. I thought twice about whether to share that information, and felt it was a little risky to do so, because I knew some people wouldn’t necessarily agree with my course of action, or approve of it. If I’m honest I’m not exactly confident of my own actions because on one occasion I didn’t seek permission to record it.

The first occasion was in A&E (a couple years ago now) and I asked the doctor if they minded me recording what they were saying so I could have it as a record and to share with family members. They had no problem whatsoever, seemed almost indifferent. I just recorded what they told us, listened to it a couple times after and I no longer have it as I’ve changed my phone since then.

More recently I recorded one of my Dad’s oncology consults. On this occasion I didn’t ask permission, the appointment was already 90 minutes late, I didn’t think of it, and it was only once the consultant started explaining something complex and I could see my Mum struggling to take notes, that I thought I’d just record it on my phone again. I can’t tell you how many times my Mum, Dad and I have all sat through the same conversation, with the same person, at the same time and yet come away with different understandings or memories of what was said.

Certainly my experience of Dad’s current situation is that it is extremely complex, and extremely complicated. It doesn’t really fit with my mental stereotyped image of clinical science. In fact i’d go as far as to say it doesn’t feel like science, and thats no bad thing, its much more human than that. My Dad has (with a few minor exceptions) received outstanding care over the past five years, he has defied all odds, and its not much short of a miracle that he is still here. None of that would have been possible without the phenomenal skill, compassion and knowledge of the many medical professionals he has come into contact with. At this stage though, as Dad is receiving palliative treatment (blood transfusions to counteract bleeding tumour, chemo, scores of drugs) it seems that it is more art than science. Everyone who comes into contact with Dad seems to have a different interpretation of what the best course of action is, or they don’t know – sometimes that honesty is refreshing, sometimes it’s just plain scary.

What I have learnt over the past five years is that there is probably no such thing as a textbook case, certainly if there is my Dad isn’t it. Consequently so much of Dad’s care is very personalised and tailored, things change quickly, we’re aware he is in a very precarious situation. I consider the best thing I can do is support him and Mum, and my siblings who live away, so we are all as aware as possible (or as aware as we want to be) about what the current status quo is, for as long as that lasts. To that end I don’t regret recording his consultation, even though I feel a residual guilt that I didn’t ask for explicit permission (it upsets the ethical researcher that runs through my core), it felt like the best course of action at that time.

I’ve listened to the recording twice since, with my Mum. No-one else has heard it, it’s something that is quite precious to me. On the one hand it serves as a factual record for when we start doubting ourselves and on another it is a recording of my Dad discussing critically important decisions with the man who has in my opinion (along with his surgeon/previous consultant) done the most to sustain his life. I can’t imagine anyone outside my own family ever hearing that recording, unless I figure out how to save it elsewhere I could lose it at any time, but I like the idea at the moment that one day my 2yr old niece may be interested in knowing more about her Grandad and she could hear for herself how brave he was, how he faced what I would have considered impossible conversations a few years ago, head on. It’s evidence of his spirit, and my fantastically brave and spirited Mum’s attempts to do the absolute best for him.

I appreciate the ethics are dubious, but I’m glad I did record it. I also think there could be a really useful application of this simple technology in everyday consultations. Lots of patients have smart phones that enable recording nowadays, I’d like to think that there is a GP out there who would embrace the idea – how about actively encouraging recording, even if it wasn’t a verbatim record that people wanted, I think most doctors surgeries could help people to get more out of their allocated slot if they encouraged people to think of the questions they wanted to ask before seeing the doctor.

Some of the obvious concerns are around litigation, but really, really in our enlightened world of empowered patients is this an acceptable argument? OK, so I’m playing devils advocate but really look at how much information is collected from the patient by the doctor in an average consultation. No patient I know of has ever been asked if they mind if the doctor takes notes. How about taking a leap of faith and embracing the opportunity of supporting patients and their families. Who wouldn’t want to?

Let’s talk about death #dyingmatters

Spinderella cut it up one time….

Before I go any further I feel I should share two things with you, the first is that I am *very* comfortable talking about death and am thinking about blogging a post each day this week in support of the Dying Matters Awareness Week (so forgive me if it’s not your thing – although I’m hoping I might convince you otherwise), the second thing is that I currently have an earworm, Salt n Pepa Let’s Talk About Sex, that inspired this post title! So forgive me if I bust into 90s groove half way through.

In fact we probably don’t need to leave Salt n Pepa just yet, their 90s tune was focusing on safe sex and censorship in American mainstream media at the time. A few selected lyrics as follows:

Let’s talk about sex, baby
Let’s talk about you and me
Let’s talk about all the good things
And the bad things that may be

Let’s talk about sex for now to the people at home or in the crowd
It keeps coming up anyhow
Don’t decoy, avoid, or make void the topic
Cuz that ain’t gonna stop it

Now we talk about sex on the radio and video shows
Many will know anything goes
Let’s tell it how it is, and how it could be
How it was, and of course, how it should be

OK, this connection gets a little tenuous by the second verse but I’d argue there are strong parallels to death and dying, not in terms of censorship stopping us discussing it, but certainly society’s openness and people’s willingness to do so. Re-read those lyrics and replace the word sex with death to get my point!

Dying Matters Awareness Week started today, their website is full of brilliant ideas, resources, research and suggestions for anyone who wishes to know more. Regular readers of this blog will know that my Dad is terminally ill and death is pretty much on my mind a lot at the moment. It’s interesting to me that my Mum and I have discussed his funeral wishes, but Dad and I haven’t ever had that conversation, we’ve started it on a couple of occasions but he brushes it off and says Mum knows what he’d want and he’s not too bothered because he’ll not be around for it (ever the pragmatist). In a way I think we left it too late for that to be an easy conversation. We have however discussed his wishes with regards to where he’d prefer to die, and he has an Advanced Directive and a Treatment Escalation Plan that I have a copy of, and I do feel able to advocate for his needs if I ever had to.

The interesting thing to me is that I’m quite comfortable with death, as a family I think we’ve had an unusually open approach to discussing death. My brother in law and my sister out law often comment on how much we’ll discuss death. In fact they are both uncomfortable with the likelihood that we’ll end up discussing death at some point each time our family gets together – and that’s not really to do with Dad’s illness or the fact we have older relatives. It’s always been normal to me to discuss death.

My Mum worked as a probate executive, supporting people to write wills, deal with dead people’s estates, and generally providing support to older people once they moved into care homes to protect their wishes. As a young child we were toured around care homes at Christmas or Easter to visit Mum’s clients (or sometimes people that weren’t her clients but who didn’t have anyone else to visit them) and spend time with them when other people would have visitors. As a teenager and young adult I attended a couple of funerals with Mum, in some small part as moral support, no doubt in some small part out of boredom or curiosity but mostly in an attempt to give some recognition to someone who had lived a life and died alone – on a number of occasions there would be just three or four of us to witness those funerals (Mum, myself, a care home manager or staff member and the person taking the ceremony), on one or two occasions where a person lived alone it would just be Mum and I.

I often joke about it but we were so comfortable with death in my family that when my big brother needed a work experience placement he ended up spending a week at the local undertakers. An experience that he really enjoyed and I’m sure was much more interesting than the week I spent in Natwest Bank. I think my school would have had an absolute fit if I’d suggested I was going to shadow an undertaker, so banking it was.

This week I’m going to try and blog a few times about #dyingmatters. In the hope that it sparks some interest or debate amongst people, or that it provides an excuse or prompt for you to discuss death with your nearest and dearest (if you need one). I promise it won’t all be doom and gloom, I think I’ll do one post about eulogies, one on memorial benches as an artefact of a life and death, maybe one about Dad and one about discussing death – just in case Salt n Pepa didn’t provide enough advice. Let me know if you have any special requests! Now…

Let’s talk about death, baby
Let’s talk about you and me
Let’s talk about all the good things
And the bad things that may be

Give blood – you don’t need it!

I’ve banged on about giving blood on here before, which is a little virtuous and deceitful given I’ve not done so in years! Not for the want of trying though, I’ve just not managed to get a session appointment that I could make but all changes this week, I’m donating on Thursday evening at the racecourse in Newton Abbot. Dad has been receiving blood transfusions to keep him alive for a couple months now, he had his first one in October last year and has been more reliant on them as time has gone by. I’ve also blogged about organ donation, most recently in The ultimate recycling? This week facebook and the NHS Blood and Transplant Service have launched a campaign to increase blood donations; the Olympics, the bumper crop of bank holidays and various other big events mean that they need to increase stocks.

Without blood transfusions my Dad would not be here today. He can’t keep receiving transfusions forever, in fact it wouldn’t be fair or a good use of resources, but for now it is what is keeping him alive. You could sign up to donate blood today and transform someone’s life. Hopefully it won’t take you as long as it has me to get around to actually donating, but registering is the first step. I have seen the significant difference a blood transfusion makes to someone. In Dad’s case it is the difference between life and death. Please go sign up now. You can register by phoning 0300 123 23 23 or visiting their website here. What’s stopping you?

In pursuit of a work-life balance

If I’m honest with you I’ve spent most of my life struggling to find balance. As a young child I tended to be into things, in an all or nothing kind of way, so if I was reading a book I wouldn’t just read it and put it down, I’d devour it, keep reading until I got to the end, desperate to know more and fully engage with it. That was never really considered a bad thing, who wouldn’t be pleased if their child was into reading. My parents went to great efforts to make sure that we had a balanced upbringing too, so as much as I loved study that wasn’t all I got up to, I was also into Judo and was regularly dragged out onto Dartmoor to go letterboxing, I attended Sunday School like a good girl should (although nothing stopped me asking questions about why, why, why), we learnt to swim at a young age, spent hours down the beach as kids (although I was often found reading on my favourite rock) and generally had great fun.

Finding my balance as a youngster

As I got older it became clear that I was indeed bookish – a curse my Gran laid on me at a young’ish age, imparted with a warning that I should be careful because boys don’t like bookish girls. Obviously I decided that any boys who didn’t like my bookishness weren’t worth worrying about, and to be fair I wasn’t too interested in serious romance, instead being far more interested in leaving home, studying and socialising. I had a whole string of jobs before I got my first ‘proper job’. I worked in a pot pourri factory, selling icecreams and tat at the Model Village, as a chambermaid and a waitress, at a kids club and so on. I also spent several happy years at Sainsburys, working in the bakery and at one stage did consider becoming a Trainee Manager, a relatively tempting prospect as a 17 year old who wasn’t sure about university (no-one in my family had ever been and there was certainly no pressure to attend). The best thing about Sainsburys was that it felt like a big family in the bakery, a loud and rowdy one, but a team nonetheless. I worked hard and played hard, spending hours of time with my colleagues, at work and out and about enjoying the delights that The English Riviera had to offer. When I left for university my position was kept open for Christmas, Easter and summer holidays (luckily living in a tourist town there usually was extra work available when I was on holiday from my studies).

As a student it was totally accepted, in fact almost expected, that you had to work a lot to afford to live, so I had Sainsburys out of term time and I worked on the university bank staff (ran a post room, worked as a student warden, odd bit of waitressing) during the academic term to pay my bills and afford to socialise. I also volunteered on a number of projects, every Wednesday afternoon (on community projects) and about an evening a week on the Nightline service. As a PhD student I studied full time, lectured at a neighbouring university and ran tutorial groups and did marking at my own. Alongside the social and volunteering. I never had a minute to myself, and that was considered perfectly acceptable – and I rationalised it by considering it all good experience for my future. I guess it’s worth also acknowledging that I was at uni in the days before twitter or facebook (thank god) but it means social distractions were either face to face coffee gatherings or nights out, or phonecalls or texts, and occasionally the odd letter was written.

My first ‘proper job’ was as a lecturer in Dublin. I worked very hard (preparing all my lectures for the first time took hours of research and preparation) and I played very hard, I also worked quite hard at making friends and building a social life (and yes it did feel like work for the first while). It was another all encompassing experience, oh and how could I forget, I also finished the writing up of my PhD in my first year lecturing, luckily I got a solid summer holiday to immerse myself in it. It was only when I returned to the UK to work briefly for the Civil Service that I ever had to consider my work-life balance as a construct. I had to clock in to work for the first time since Sainsburys, and you were actively discouraged from working over your allocated hours in a week. Of course it did happen, but without prior arrangement there would be no pay for it, and it really wasn’t seen as a sign of anything other than your own poor time management. I was living in Wales and working a lot in London at the time and as much as I’d have loved to have worked longer hours when I was in the London office, that was frowned upon, so I spent a lot of evenings wandering the parks of London or eating JS salad in my hotel room! The other joy of working in my job was that although you had a work laptop, you couldn’t connect to the network without hideous amounts of security VPN stuff (which I never did understand) but it meant you couldn’t meaningfully do anything if you weren’t on the network anyhow.

I didn’t last long in the civil service, as much as the enforced work-life balance was great, it did something very damaging to my motivation. Well I’ve always considered that it impacted on my motivation, it might also have been the work I was doing, or the feeling of being very small and insignificant in the face of huge amounts of bureaucracy. Either way I moved on to a role that was more in keeping with my previous experiences, I was part of a much smaller organisation and felt very able to influence, contribute and shape it. Alongside this the other joy of a small organisation was that no-one ever discouraged you from working long hours, there was no mechanism for clocking in or out, travel was also a part of the role and the onus very firmly placed on yourself to protect your own work-life balance.

Therein lies the rub. I’ve just never been that good at finding that balance, if my work/hobbies/social interest me then I’ll throw myself into it. That’s just who I am. What I’m slowly growing to realise is that is no bad thing, but it is also not sustainable without support. I can not keep working longer hours in the false economic belief that I’m doing more – well I can, but it’s simply not worth it. There has been a lot written about this of late, for example an article from the Harvard Business Review Is your smartphone making you less productive? (I’m not blaming the technology myself although it definitely doesn’t help), an accompanying book Sleeping with your smartphone: how to break the 24/7 habit and change the way you work, a similar focus from Time Why companies should force employees to unplug and all of this alongside the backdrop of the EU Working Time Directive that limits employees to a maximum 48hour work week (except in the UK where an opt out clause means that employees are allowed to work more than 48hours but can not be forced to do so). Geoffrey James sums it up in his article Stop Working More than 40 Hours a Week where he points out that quality suffers from long hours, that it sets a bad example to colleagues and staff, and that the law is in place for a reason.

Anyone who has browsed my blog before, or knows me at all, will understand that my Dad is terminally ill with cancer at the moment. Not surprisingly, this has had a huge impact on our family life. It has also meant that I’m find it increasingly difficult to focus so solely on work. It’s not that I care any less about work, just that in the face of life or death, it takes a back seat. I’ve also been talking to Dad about what makes me happy, and what the meaning of life is (or could or should be) – nothing obvious here, we decided it is for each and every person to determine for themselves, my last attempt to define what makes me happy is here, but on this topic well worth a read is The Happiness Product from @mistergough.

So it feels like work and family life is a little out of kilter, so what am I going to do about it? Two months ago I signed up for the Torbay Half Marathon but have done very little (and very sporadic) training since, am going to get back on that this week. I’ve also just started a module with the Open University, focusing on Creativity, Innovation and Change I’m hopeful that it will provide me with some practical hints and tips to support me to perform better in my role at work, thereby improving things for myself and my colleagues and making me more efficient at work. If nothing else it will force a balance in my working hours, in a more positive way than a clocking in and out machine might, put simply there are only 24 hours in a day and if I am to run this half marathon, study, work and have enough time to see family and friends I need to realign the allocations somewhat.

I’d be very interested to hear from anyone reading this how they manage their own work-life balance, or whether indeed it’s not a problem. I suspect that this will be an ongoing focus for me over the next while (and indeed possibly my entire working life) so all thoughts are very welcome. Thanks.

A young boy I took loads of photos of when I was on holiday – a tenuous balance photo – more here!

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.