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

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

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

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

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

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

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

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

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

4. It’s a game of chance not science

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

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

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

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

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

Liberation….for now

This will be a short post to update on Dad and to highlight a new book featured by the Guardian that looks brilliant!

Dad finished his antibiotics yesterday, having finished chemotherapy last week. He has a handful of pills to still take each morning, and for the time being still has his PICC line that needs flushing each week. He also needs to be closely monitored with fortnightly blood tests and he’ll continue to take his own obs, temperature/weight/O2 sats each day. I’m also sure the unofficial but ever-effective Sylv-monitoring will continue. The only additional treatment available to him now is to continue blood transfusions, when and if he needs them (although the chemo does appear to have slowed the bleeding tumour down) and to treat any infections or illnesses that crop up, as you would with anyone else.

So to all intents and purposes Dad is free, certainly from the jaws of chemo, if not from the cancer itself. Dad’s condition is still very much terminal, he could decline rapidly (or catastrophically deterioriate, as we were once told) at any moment. He could also of course continue his fight and face an inevitable gradual decline, after all he’s 64 and old age will get all of us eventually, sometimes I think Dad can convince himself that it’s not the cancer that is the problem, just old age creeping up on him.

His oncologist wont see him again now until mid September. When I was watching 24 Hours in A&E at the weekend a lady referenced the fact that her next appointment wasn’t for 6 weeks so at least her consultant believed she’d live that long. It made me chuckle, the subtle ever-present signs and symbols that people can find when they look for them…we had all commented on the fact that Dad’s appointment was a whole eight weeks away, and taken comfort in that inherent optimism. While I at least am not completely confident he will make it that far, but we have to hope and continue hoping he will.

My Dad is a phenomenal example of how setting short term goals and striving for them can keep you going. The immediate goal is to live to see his second granddaughter, due in two weeks time. If he manages that, the almost unthinkable landmark is his 65th birthday in September, which would also coincide with his initial diagnosis five years ago. I really hope for my Dad that he lives that long, in the immediate term I think becoming a Grandad again will be a boost for his soul, aiming towards being able to claim his pension at least once is critically important, as is (in some small way) not breaking the appointment he has made with his oncologist for later in September – my Dad is a man of his word and once an appointment is made, he’ll damn well make it, unless of course the grim reaper gets him first.

So what has this got to do with a book I hear you ask? The illustration above comes from a feature in the Guardian of a new book by Nick Wadley, Man + Doctor, that charts his experience of the medical profession and hospitalisation. I’ve already ordered myself a copy and look forward to flicking through and nodding (I know I will) with the familiar resonance of life drawn.

The final drawing featured in the Guardian was the one above, marking his liberation from hospital. Dad certainly isn’t skipping and dancing his way to a new healthy start in life, but I hope he feels something similar, a liberation as he is released from treatment, in time to enjoy our fleeting English summer.

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.

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.

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!

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

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?

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.

The ultimate recycling?

In Britain, there are currently over 10,000 people in need of an organ transplant. Each day three of them will die because of the lack of donors. Despite this, 15,000 people die each day in the UK. Only three of them will become organ donors. These statistics just don’t make sense to me.

This morning I read an article from yesterday’s Guardian about living organ donors – the photo of the two brothers, Garyn and Gethyn George, speaks volumes. I’m not going to paraphrase the article but it’s well worth a read (although if you’re as soft as me you might need a tissue by the end)!

At Christmas I watched a documentary I’d recorded back in October, called Transplant. It portrayed the story of how a single organ donor, Penny, changed the life of so many others. Penny was 65 years old when she was admitted to St George’s Hospital in London having had a brain haemorrhage. There are age restrictions in place on certain organs, for example you need to be 65 or under to donate a heart, but kidneys can be used at any age. Cyril, Penny’s husband, talked in the documentary about Penny’s belief that organs were leant to you, she felt that if they could be used after death then they had to be.

The pain of the grief that Penny’s husband and daughter are experiencing was palpable in the documentary, I really felt for them. The documentary also spoke to several of the organ recipients, and their family members. The gift Penny gave has transformed their lives in a way that I don’t know many of us ever will. The wife of one man who received Penny’s liver spoke of her emotions as a mix of excitement, terror, guilt and fear. He went on to make a full recovery. The take away message from this documentary, and from reading the article yesterday, is that more people need to donate their organs and need to make it clear that they wish to do so.

Most people support organ donation in principle, but approximately 40% of families still decide not to donate their loved ones organs at the time of death – even if they have expressed their wish to donate, and in some cases are on the donor register. I was struck by how determined and confident Penny’s husband and daughter were in her wishes, it seemed to make their decision much easier, in fact it wasn’t their decision and they were clear on that.

One of the things I hear most when discussing organ donation with friends, is the concern that they wouldn’t be buried or cremated whole. I understand that for some people this is a real concern, for me it’s less of one and one of my favourite moments in the documentary was when Penny’s daughter explained:

We weren’t particularly precious over what she had with her when she was cremated. We don’t have memories of her heart, or her liver, or her kidneys, we have memories of her.

If you’ve not thought about organ donation, take the time, even if you decide you don’t want to at least you will have made an active choice. If, like me, you wish for your organs to be recycled then you need to make it explicitly clear to your family that you want that to happen, it makes it easier for them and significantly increases the chance that you can transform or save someone’s life.

To find out more about joining the donor register visit the NHS Blood and Transplant service site here. To hear about my Dad’s experience of a blood transfusion, in case you’d like some inspiration for giving blood you can read an old post here.

When it’s good it’s very very good #NHS

The last few days Gran hasn’t been very well, I spent an hour with her and Grandad yesterday evening and she was perky, but not herself. Grandad spent the whole time just looking at her, wistfully, worrying but like he was drinking her in with his eyes. They’ve been together since they were children and celebrated their 70th wedding anniversary last summer, I’m really not sure how one will exist without the other, they’re a complete and utter team.

Early this morning my Auntie and Mum decided that Gran needed to go to hospital, the ambulance was called and a rapid response unit was dispatched. They live down the bottom of a very steep hill (too steep for the ambulance to get down) so Gran was wheeled out of the house, up the hill and into the waiting ambulance on a trolley, and whisked away to A&E. Mum was blown away by the care that Gran (and she) got – Polly and Tom who took her in, the nurses who settled her into a room and cleaned her up, the consultant and doctor who examined her. She had a full MOT, a couple of ECGs, blood tests, x-rays, examinations and was put on a drip. I’ve just been up to see her tonight, she has been admitted onto a ward now, in a side room (the same one that Dad was in a couple years ago), and she looks exhausted but restful. With a bit of luck she’ll be sent home in the next day or two, she hates hospitals and hasn’t been into one except as a visitor since giving birth over sixty years ago! I hope that she makes it home, Mum was telling me that Grandad was distraught when they took her away this morning, sat in his chair crying (I’ve never seen him cry, he’s not of a generation that seems that comfortable with expressing emotion) and I hope for his sake, and her’s, that she get’s home. They’re realistic about their age, they know they won’t last forever, but I really hope she gets home to Grandad just once more.

The point of this post was to say thanks though. I’ve had one bad experience in our local A&E and it’s always at the front of my mind when I hear someone has gone in there. If nothing else the treatment Gran has received today has gone some way to making up for that experience. The staff were really kind to my Gran, looked after her and treated her with respect and dignity. I’m conscious that lots of people complain about the NHS (myself included when needs be) but my family have received more than our fair share of treatment in the last few years and it never ceases to amaze me how awesome a machine the NHS is, when it’s well oiled.

I suspect I couldn’t work in a hospital environment, I couldn’t handle the smells, the stress, the confusion, the desperation, especially in care for older people. I also know I wouldn’t be able to work on an ambulance, never knowing what you’ll turn up for, wishing away the final call of the night shift because you know it’ll eat into your sleep or day off. I am so grateful to each and every NHS worker who chooses to look out for other people, you really do make a massive difference to people’s lives. Thank you.

Tempting fate this Christmas?

It’s that time of year when most people in the UK are preparing for Christmas, or fighting the societal need to do so! I used to love Christmas when I was a child, and even into early adulthood, it was a chance to get together as a family, to see friends not seen that much throughout the year, to return home to Torquay when I was living away, and generally to be sociable. In the last few years Christmas has lost a little of its shine, I’m not sure whether it’s a side effect of various family members being old and/or ill, not having young children of my own, working so hard that the real delight is having three days away from work rather than anything else, and/or whether its something to do with our family now being spread out a bit more and therefore the balance needing to be struck between wanting to get together, but everyone also wanting to lead their own lives.

Not sure really, but this year I’m determined to have a good Christmas. I’m forcing myself to do some Christmassy things – next weekend I’m borrowing some of my best mates children to take them to the nativity play at Pennywell Farm, I’m also going to the Army Cadet Christmas Carol Service with mum and dad. We’re having a mini-excuse for fun and food at work and indeed a Secret Santa.  Most importantly I suppose, my Dad has made it (so far so good) to another Christmas.

Bobby J was diagnosed as terminally ill about 18months ago, first having been diagnosed with cholangiocarcinoma (bile duct cancer) just over four years ago. Last November I wrote about my feelings about Dad’s cancer having no cure, in it I referred to the fact that Christmas 2010 was likely to be his last, and none of us dared even think he wouldn’t make that. Here we are, twelve months later, and I’m torn between celebrating the fact that it looks like Dad will see Christmas 2011 with a completely irrational fear about tempting fate. I don’t believe in fate, Correction, I’d like to think I don’t believe in fate, yet the reality is I get nervous about saying that out loud – in case I tempt fate. Ridiculous I know.

Up until a few days ago I was confident Dad would be here for Christmas, in fact my mind doesn’t actually allow me to think anything but that. The reality of living with cancer, and someone being terminally ill, is that you can’t ever know anything for sure. So while I’m confident that Dad will be here, I’m also just trying to reserve a little bit of my enthusiasm and acceptance of that fact, to sort of prepare for the possibility that he might not be. That, or worse still, that he’ll get ill over Christmas. As much as I love the NHS, and I really do, my experience to date of their Christmas service has been fantastically, generous and brilliant people, doing their best on skeleton staff with skeleton resource – which actually means it gets fairly scary at times.

I guess as I come to the end of this reflection, the crux of the matter is that you’re faced with a choice if you, or someone you love, has a degenerating or terminal illness at this time of year. You can try and prepare yourself for the possibility that they may not make it, or they may get ill, or you can chose to ignore that reality and just hope it won’t happen. I think this year I’m going to throw myself fully into trying to get into the Christmas spirit, and just keep a little of the concern in the back of my mind, as preparation for the possible alternative. Above all else though I’m going to be grateful, truly grateful, that my Dad is here with us now, on 10 Dec 2011, that we’ve had all this extra time that we didn’t expect to have with him.

I’m still struggling with the age old question of what to buy a dying man for Christmas; for his 63rd birthday I made him chocolate brownies, for his 64th I brought him an Atlas of Remote Islands, a beautiful book of 50 remote and isolated islands that few people would ever visit, only for him to proudly announce he’d stopped at one when he was in the Navy! So it’s that time of year again, I’ll keep thinking about what to get him, but any suggestions would be very welcome.