A true Torquay gentleman

Albert William Langmead, JP

Died Sunday 8 July 2012 at Torbay Hospital aged 94 years.

Devoted husband for 71 years. A loving father, grandfather and great-grandfather.

A true Torquay gentleman who will be sadly missed by all who loved and knew him.

Share a moment, hold a hand

My loving, caring, stoic grandfather is dying. He has been in hospital for weeks since breaking his second hip of 2012, his recovery took a turn for the worse a couple weeks ago and he was transferred back to the main hospital from the community hospital he had been in.

This week there was a change and it became clear that he was deteriorating and would soon die. He is 94 years young and as my Gran was telling me last night, ‘at our age your body parts are just very tired and eventually stop working’.

Yesterday afternoon I had the privilege of sitting with Grandad for a couple hours. He has never been a particularly tactile person but we sat in (mostly) silence and held hands. He woke up shortly after my Mum left to go home and greeted me by name, so I know he knew I was there. While he was resting, I was reflecting on my life. I realised I don’t often stop for a prolonged period and just think, about me.

There is something about sitting with someone at the end of their life that makes you consider the richness and balance of your own. More on that another time. I think I will treasure those two hours for years to come. I’m not sure whether they will be as profound in the long run as they feel they could be now, but I am very, very grateful for having had the opportunity to sit and hold Grandad’s hand.

As I drove home May the Kindness by Jackie Oates was next up on my CD player, I’ve never really listened to the lyrics before but I found them quite poignant.

So share a moment, hold a hand
Wipe the tears, understand
Life is borrowed we contour
Speed and light and bring your spirit home

May the kindness, that starts with you
Turn full circle, when it’s due
And the flame, that burns your heart
Burn with love, and hold us now we part

I am grateful for every moment I’ve shared with my Grandad, particularly those yesterday afternoon.

Living on quicksand

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

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

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

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

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

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

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

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

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

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

A carer’s skill set

I was going to write a post about my Mum for carer’s week but found this one that I wrote last year so thought the general introduction to how amazing she is, was already done. So then I wondered what would be most useful and thought I’d reflect on the #swscmedia discussion on twitter the other night. I thought I’d focus on identity and skills of being a carer, as I observe in my Mum. If I had more time, and she was less busy, I’d have sat down and discussed this with her more fully to check I was being balanced, but given the pressure we are both under at the moment I didn’t get around to that, so big fat disclaimer – this is my view, of my Mum. Therefore it might not represent her own experience.

A small bit of context, my Mum lives with my Dad (who is terminally ill with cancer) and they both live next door to my grandparents who are in their 90s. She took early retirement five years ago and has been a full time carer on or off ever since.

What follows is a list of the roles she regularly performs as a carer, and the primary skills that she either needs and/or demonstrates in that. They’re in no particular order:

Provides company and social support – communication skills, empathy, recognition

Dispenses medication (about five times a day) – logistics and planning, time keeping, the handing the pills over is the easy bit

Transport to the doctors/hospital – chauffeuring/taxi driving, diary management, social/moral support

Accompanying into doctors/hospital appointments – logistics (often hard because most appointments run late, which is a nightmare if you have an appointment later that date, or with another family member) note taker, facilitator, advocate,  debater and synthesiser

Follow up appointment maker – diary management, logistics, note taker

General health monitor - this means reminding my Dad to take his obs regularly, noting down the results, UN ambassador grade persuasion skills when it is clear that something is wrong and medical help is needed, advocate and general social support

Emergency admissions to hospital – decision maker, logistics, communicator (and increasingly she finds it hard, Dad has had to be admitted by ambulance three times recently, on every occasion he has been admitted, her sense of being a nuisance grows by the call), advocate, history/narrative sharer

Keeping people fed – planner, shopper, cook, dish washer (usually runs concurrently with dispensing medicine)

Keeping people informed - communication, empathy, patience, storyteller (everyone wants to know the same details – lots – and it is incredibly draining to have to tell the same story time and again, especially if it is complex and not a particularly happy story)

Advice and opinion – finder and synthesiser of knowledge and experience, communication, advocacy, opinion, debate

No advice, no opinion, just listen – hold back on what known, listening, empathy (often it is hard to know whether someone wants this or the previous point and it is quite a skill in being able to switch between the two within a conversation or situation)

Banker - ordering financial affairs, banking, accounting, managing benefits or grants

House alterations – planning, project managing, overseeing

Researcher - finding knowledge, assessing knowledge, synthesising knowledge and being balanced about it (I have worked hard to convince my Mum to be discerning when using the internet, she isn’t bad, but it took her years to hone her skills – as it would any of us, and there’s a lot of rubbish to sift out)

Philosopher - offering balanced and rational perspective, listening, philosophising

Co-ordinator - above all else the need to coordinate, arrange and balance all of the above, especially if you care for more than one person.

This is by no means a complete list, it is what is on the top of my head. The skills of logistically arranging everything, and speaking all the different professional lingo, and switching between, while advocating for someone else is a completely undervalued skill set. My Mum is phenomenal in her ability to juggle all these different elements, I’ve never met a multi-tasker like her, and I am in complete awe of her ability to do all of this while most of the time maintaining a positive outlook. Sometimes her outlook isn’t positive, it’s bloody gloomy, but I think that is only a rational response to the situation.

 

If you know someone who is a carer ask them about their life, ask if there is anything you could help with. I’d almost guarantee that they’d say no, they’re just fine. That may be the case, but tomorrow they may not be. Certainly my grandparents and Dad’s health has fluctuated over time, some days everything seems manageable, others it feels like the planets are colliding to conspire against us. Caring is one of the most thankless tasks, yet without it our society would grind to a halt. There are a whole army of carers who just keep the world ticking over, without most people knowing they are even doing so. Sometimes knowing someone else gives a toss is enough. Don’t be afraid to ask a carer if they are ok, you might not be able to support them or fix things in any way, but my odds are on just asking will help more than you realise.

ps My Mum is far more than a carer, she (some of the time) has her own life, her own aspirations and interests. Having re-read this I wanted to clarify that this is just some of the caring tasks she performs, it’s not all of them, and it’s not all she does – in fact she’s a one woman whirlwind who never stops doing. I thought it was an important point to clarify as I don’t think we should define carers by their caring role (unless they wish to do so) and this wasn’t meant to do that, more advocate and share some of the skills that this hidden army display!

The madness of May (and June)

I had my second OU tutorial on Saturday, it was six weeks since the last one, and I was struck by how much had happened since the first one. I think it’s fair to say that May was a month of madness for me, and so far June isn’t proving much better.

Since that first tutorial:

* There’s lots been going on at work, as ever. If you’re interested in the Value of Social Work then check out the RiPfA Manifesto microsite here

* I have almost finished my assignment – it was a hard one as it caused me to analyse my personal style and consider how that fits with my organisation’s climate and culture, very revealing

* My Grandparents celebrated their 71st wedding anniversary, but not before my Grandad fell in the night and broke his hip – the opposite one to which he broke after Christmas. So he’s a 94 year old with two new hips so far this year, doing his own bit to upset NHS rationing quotas He is still in hospital and we visited him on Father’s Day and he was in good spirits, although looking very frail

* My Dad has been admitted to hospital as an emergency on two occasions,  both times 6 days after chemo, he has yet to make it to the second treatment, even though he has now completed his fourth course. Palliative chemotherapy is relatively new, it doesn’t seem that it’s easy, two trips in an ambulance, two emergency admissions doesn’t leave anyone feeling that good – as amazing as the staff working in casualty are, the process itself is draining. Not helped by one occasion being the middle of the night, well 3am by the time Dad finally reached a ward.

All of that said I’m not really complaining, without the chemo there’s a good chance he wouldn’t be here any longer. Indeed he said to me himself on Sunday that he didn’t think he’d make Father’s Day, neither did I when he was admitted earlier that week.

Today Mogs isn’t well. He got up and fell over, lots. He is walking with a sideways wobble and feeling very sorry for himself. He keeps falling over and isn’t really eating. My vet is amazing. I rang at 8.15am, they don’t open until 8.30 but the receptionist was happy to talk to me while she waited for her computer to limp to life. Luckily there was an appointment just after 9, he was given a thorough check over and the current suspected prognosis is a middle ear infection. He had an anti-inflammatory and antibiotic jab and he has to go back in 48 hours. So far he doesn’t look much better but we’ll wait and see.

On the plus side, always looking for one, my Mum took a photo of me and my Dad on Father’s Day and I love it – it’s not the best photo ever, it features me and Dad, and Stella (my parent’s dog) and better still the top of my Mum’s head – but I do love it. Small things, good to have some positive memories – it goes without saying that taking the photo alone was an entertainment -neither of us are particularly at ease having our photo taken and my Mum has skills in many areas but photography isn’t her natural strength (poor eyesight and all that). Anyway, take a peak at my positive show on what has been a fairly horrendous six weeks. As a very wise woman once told me (@amcunningham) just keep putting one foot in front of the other, day by day. I’m still walking.

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

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!

A game of odds #cancer

A week ago I wrote a post explaining Dad’s latest situation with #cholangiocarcinoma Don’t give up the ship, fight her till she sinks. At the time we’d just seen his oncologist and heard the news that Dad’s one remaining option was to have chemotherapy in an attempt to stem the tumour in his stomach bleeding, which in turn is causing him to become severely anaemic and requiring regular blood transfusions.

On Monday Dad went to the unit where he receives the chemotherapy to have his prep session and bloods taken. Less than a week since his last transfusion and he’s anaemic again and his haemoglobin level was down to 7. The fantastic staff did all that they could and managed to fit him in on Tuesday for another blood transfusion, in order for him to start chemo today as they’d originally planned. All of this organised at the drop of a hat, with Dad’s specialist nurse doing what he seemingly does best, twisting arms and calling in favours. So today was his second day at the unit, ten hours at a time, so far so good. The chemo is very risky for Dad, but its a game of odds and the balance of probabilities suggests that doing nothing is even riskier.

Possible side effects include all the usual things (anaemia, hair loss, constipation, wind, loss of feeling, impaired immune system), a major bleed (not surprising given the amount of blood he is losing anyway) and neutropenic sepsis.

Dad has had sepsis on a couple of occasions, including the last time he was on chemo, they’ve warned us that the most dangerous time will be this weekend. Anyone who has ever been taken ill on a weekend, never mind a Bank Holiday, never mind Easter…will know that you don’t want to end up in A&E then. That said, I’m really impressed with the fact that they have raised the issue and reassured Mum that we have to be explicit that we need attention, and it’s also good to know that the hospice palliative care team are aware too. Unless you’ve had to do it I don’t think you can necessarily appreciate how hard it is to request attention once you’ve been admitted into hospital, especially in a busy A&E Department where you’re surrounded by other poorly people. This leaflet, and it’s explicit time bound permission statement to go back and insist on action, is really powerful stuff. Very impressive. This flimsy piece of A4 paper could make the difference on whether someone like Dad survives, I know that with this piece of paper in her hand my Mum would go and ask for further attention, without it there’s a slim but outside chance she might speak up but evidence so far suggests she’d rather not make a fuss/appear ungrateful/nag/push in etc etc etc. Never underestimate the power of a piece of paper for a generation who were brought up to respect authority!

The other possible side effect of one of the many drugs Dad is on is that it could alter your mood. I’m staying at my folks house tonight for moral support and I can honestly say that this drug has altered Dad’s mood….he was treating his sick bowl as a fashion accessory. My Dad has always been a little off the wall, in fact his party trick when I was a kid was to drive the car with his knees and no hands, but I’ve not seen him in a playful mood in ages. Obviously having the chemo and taking some step to fight it is a good thing, for now.

I was slightly wired all day today, I was up in London for a meeting, and I felt so far away if anything had gone wrong. That said it was a good meeting and nothing did go wrong and Dad is insistent that I don’t put my life on hold for him. Having been home for most of March, unfortunately I have stacks of travel planned in April. If I’m truly honest I’m absolutely dreading what the next few days and weeks hold. That said everyone who has dealt with Dad over the past few weeks has done so with such kindness, that it makes me feel reassured and humbled, and a little more daunted (because my suspicious mind assumes that this is a sure fire indication that this really is coming to an end now). I’ve also been blown away by the number of you who have left blog comments, sent tweets or DMs and those of you who text me when I was silent to check how things were going. Thank you all so much. I know it’s hard to know what to say or do in this situation, I know that some people would just rather not think about it, and I know that I am a walking, talking, ball of emotion at the moment and I’m not the easiest person to deal with at the best of time. Thank you all for your patience, virtual hugs and moral support, it’s really appreciated. I’ll leave you all with the man himself modelling an NHS sick bowl!

The beginning of the end?

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.

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.

Fitbit – Jiminy Cricket on a belt clip

I got a fitbit for Christmas, it didn’t arrive until early January, but it was well worth the wait. I absolutely love it, in fact I think it’s one of the best pressies I’ve ever received…high praise indeed.

A what I hear you ask? What is it? Why is it so cool? And why does this post start with Jiminy Cricket?

Well the fitbit is a fancy pedometer, an activity tracker, my new found conscience and motivator all rolled into one. It’s not just a pedometer though, it counts steps and stairs (elevation) climbed, and calories burned. It also allows you to track your food consumption, weight and BMI. The fitbit works in conjunction with the website and an app if you wish to use that.

That’s not all though, it allows you to manage your data over time, so you can look back and identify trends. It also allows you to complete a journal, to measure your mood each day, and allergies if you suffer from those too. Even more excitingly, you can wear it on your wrist at night and track your sleep – telling you how long you sleep for, how long it takes you to fall asleep (or to lie still so the fitbit thinks you’re asleep), how often you wake in the night and judging your sleep efficiency. I love this aspect of the fitbit and it’s really helping with my challenge to myself to get more sleep this year. Here was my sleep on one night this weekend – I’m blaming a combination of Mogs and my partying neighbours for the interruptions, but it’s good to see proof.

The other thing I love about the fitbit is the trivia and the reward badges. Stairs are measured in fun terms eg 6 floors – you have climbed the Tallest Dinosaur, come on who wouldn’t want to measure the amount of floors climbed by dinosaurs, or pyramids, or buildings. I’ve included two sample days below:

In an attempt to convince you of how wonderful the fitbit data is I’ve included a day from a few weeks ago, when I was on holiday and out walking the Scottish hills. That said it is quite fun to challenge myself on days when I’m at work and less active, to see whether I can increase the flights of stairs I walk up each week (I’ve never been up and down to the photocopier as often as I have this year), or to see how many steps I can take. The other brilliant feature is that you can ‘friend’ people on fitbit and your data is compared on a weekly basis, which supports friendly rivalry.

My fitbit was a pressie so I didn’t spend £80 on it – that said I’d spend that tomorrow if I didn’t have one. In fact earlier today I thought I’d lost it (I eventually found it under my car – note to self, make sure it is clipped on properly) and would buy one in an instant. I’m not saying it would work for everyone, but it is definitely working for me. If you’re not sure go talk to the people at @fitbit and see if they can tempt you.