The power of short term goals

About two and a half years ago my little sister gave birth to my gorgeous niece. It was about that time that I started blogging, partly because I hoped that I’d be able to record what happened in life and give her a sense when she’s older (if she wanted it) of how awesome her Grandad was….at the time I never thought she’d live to be old enough to actually remember her Grandad or know that for herself. Dad had lived with bile duct cancer for two and a half years when she was born and living long enough to meet her had been a significant motivation.

This was the two of them when she was a few hours old in the hospital

If anyone had said then that Dad would get to see her grow into a toddler and maybe even live long enough to meet her younger sister (if medical imaging is correct), I don’t think any of us would have dared hope so, never mind believe it.

Yet here we are, my sister is overdue and is going to be induced next week. Dad has been really poorly over the last weeks and months. About ten days ago he started coughing up blood, this is a new development for him. He had occasionally vomited and has been bleeding internally (which was the reason for the palliative chemo) but never before had this happened. I wasn’t at my folks house but Mum rang to say what had happened and I met them out at the hospital. To cut a long story short Dad spent three days in hospital as they stabilised him, all the while waiting for a bed at our local hospice to become available so he could go there for assessment on the way home. Last weekend there was still no bed available and Dad didn’t want to spend the weekend in hospital (it was particularly unpleasant that week, if you can remember that far back it was sunny, and there was no air on the ward and half the windows had been screwed shut which didn’t exactly help). Dad convinced the hospital palliative care team that he was good to go home and home he went.

We watched the Olympic diving together last weekend, Mum Dad and myself. I think we all shed a tear when the video intro to Tom Daley was played – his Dad was only 40 when he died last year from a brain tumour. He was 40 and Tom D was a seventeen your old lad, training for the Olympics and studying for his A-Levels. He won bronze last weekend and the local paper informs me that he maxed out on his results, with 3 As and A*s, what a success. I am almost (not quite, steady on) but almost twice Tom Daley’s age and I am seriously struggling to get my head around my Dad’s situation still. I don’t think anyone can underestimate the scale of his achievement.

The last fortnight has felt different to any that have gone before. Mum and I were out of kilter (which rarely happens) but meant we weren’t communicating very well. Dad was very, very low and has now seriously picked himself up again, fighting all the way. In terms of lists of things I never thought Dad would live to see, London 2012 was up there too. For all the complaints about us being a nation of fickle slobs jumping on the Olympic bandwagon to become armchair pundits, I’m not complaining, it has seriously helped Dad’s positivity and determination, so #ourgreatestteam can take a bow as far as I’m concerned.

So, here we are. The middle of August 2012. Dad has a matter of days (hopefully) until he becomes a Grandad again. He is also now less than four weeks away from his 65th birthday and a very significant transaction. My Dad joined the Navy as a teenager and worked ever since, until he took early retirement and two months later was diagnosed with cancer. Having worked all his life he is incredibly determined to claim his pension, at least once. Some fairly powerful short term goals going on there.

One of the absolute hardest things about life at the moment is the lack of certainty and structure. The inability to plan more than a day or so ahead. The fear I have to making commitments or booking a holiday. The constant niggle when I try to make arrangements. I’m on standby duty for my sister, she has mates around all weekend and is booked to go into hospital next week but if she goes into labour on Sunday night I’ll be jumping in my motor to get to her’s to look after number one niece while number two niece arrives. As much as I hate uncertainty these days, and hate not knowing if I’ll be called on, for this occasion I’m chuffed. I can not wait to visit a hospital for a good reason and more to the point I can’t wait for my Dad to meet his granddaughter. I’ll make sure when she’s older that she knows what an important part she played, a solid strong motivator for her Grandad to hang on and find some more energy and courage to live a little longer, fighting a hideous disease.

A month or so ago my sister got upset when I rang her because she couldn’t do anything to help. I reassured her then that she was doing more than she realised, she was reproducing, she was carrying a ray of hope in her belly, so much more than I could ever have done. After all its the short term goals, however small and insignificant in the big scheme of things, that provide the moments that make life worth fighting for.

***Update*** My new niece, Phoebe George, arrived last night (19 August) weighing in at 8lb 6oz. I’m hoping to get to meet her the day after tomorrow and will post some photos afterwards. Next goal is for Dad to meet her….watch this space

Don’t count the days, make the days count

Unless you are living in a cave, there is a good chance that you will know that the 30th Olympiad, London 2012, opened in a spectacular ceremony on Friday night. I’ll not talk about that, there are some excellent reviews about it online, my Mum’s take was that it was ‘fantastic but too long’, my Gran wanted to see more of the Queen and went to bed after the first hour, I watched it yesterday and loved it.

I’m not quite sure why but I really like the Presidenti of the IOC, Jacques Rogge. He reminds me of a friendly grandfather figure and he is often giving sound advice. His gem from the Opening Ceremony was this:

‘And to the athletes I offer this thought, your talent, your dedication and commitment brought you here, now you have a chance to become true Olympians. That honour is determined not by whether you win but by how you compete’

I love the sentiment, I love how everyone interviewed in the first couple days have talked about the success being in making it to perform at the Olympics, even people who have not qualified for further action.

Yesterday was the first full day of Olympics action and it was also the day that my Dad’s bestmate’s daughter got married. He and Mum received their invite to the wedding months ago, none of us thought Dad would be around for it as at the time he was seriously ill. A couple weeks ago Dad’s chemo was stopped, so I was stood down as Mum’s reserve date and the hope was that he would make it himself. This was really important for him and definitely something that he wanted to do. I spoke to my parents yesterday morning and they were all set for the wedding, Dad was still very tired and not feeling one hundred percent but he was up for it.

An hour later I got a phonecall from Mum; Dad had been sick. This is a relatively new development for Bobby, even throughout his chemo he has been nauseous but not suffered from vomiting. Yesterday wasn’t the first time that it had happened, although it was his worst episode and it completely wiped him out. Mum was in a little bit of a panic, she was torn between attending the wedding or staying home with Dad, she was calling to ask whether I’d come over and stay with him. My Saturday plans were shelved and over to the folks I went.

Bobby was looking really quite rough when I got there, but him and I both played it down until Mum had gone – at which point we had an honest conversation. He is concerned that the tumour is growing, it has started bleeding again, he knows that there is nothing more that can be done and I think he is a little bit scared. That said, he was also just exhausted. Bobby was packed off to bed and I settled down to watch the Olympics.

I was so grateful that there was something so engrossing and engaging on TV to take my mind off things. Later on that afternoon Dad surfaced and we spent hours watching the coverage together. We were armchair pundits of the highest standard, Olympic standard in fact.

As I sat thinking about the dedication, effort and hours of fighting that these athletes put into making it to the Olympics, I can’t help but draw parallels to my Dad’s last five years, the effort and hours of fighting. As the sign in front of their television proclaims ‘Don’t count the days, make the days count’, Dad may not be training for an Olympics, but I thought Jacques Rogge’s words were equally applicable, it’s not whether you win in the end, it’s how you compete.

Dancing the cancer dance

Sometimes I wonder whether there is something wrong with me. Given how much time I have spent in hospitals, and increasingly in our local Accident and Emergency Department, I’m not sure which bit of my brain still wants to feast on hospital documentaries, but I just can’t stop watching 24 Hours in A&E. I tend to record it and watch it when I feel able for it, and tonight I watched an episode from a couple weeks ago that just felt uncannily familiar. It focused on a lady called Josephine who was terminally ill with cancer, who was admitted to A&E with severe breathing difficulties caused by a bacterial infection. During the episode the consultant caring for her had to have the conversation with her (and her family members) about whether she would wish to be kept on life support if she needed intervention for her breathing if her condition were to deteriorate. She chose not to, something that I suspect came as a little bit of a shock for her family members.

They showed her daughter, Jackie, reconciling herself to her mum’s decision and discussing it with her niece and her partner and then she said something that cut through me like a knife, because she used words I’ve heard myself use. She said she couldn’t go back into her mum with red eyes (from crying) because she can’t let her think she’s given up on her. Throughout the episode you could see Jospehine’s daughter willing her better, I was torn between thinking she could go easy on her mum and that she was almost putting pressure on her to stay alive, and recognising myself the impossible situation you find yourself in knowing that if you show doubt you are giving too much away to your parent. There is a very real fear that if you stop believing in them, then they’ll stop believing and die. I don’t think the fear is of them dying in itself, so much as them dying prematurely because they are exhausted and you haven’t convinced them to keep going. Jackie also said something else I’ve muttered myself before, ‘Not yet, it’s too soon’.

I have danced that dance many times. It comes up regularly, although often the tune is slightly different! Should I stay over at my parents to enable my Mum to get a good night’s sleep or does that signal to my Dad that we both think he is more poorly than he realises; should I go on holiday/take the weekend away that has been planned for months and risk Mum being on her own if he deteriorates quickly and maybe not seeing Dad again or do I stay home, play it safe and show my inward concern to him; should I go and get medical help when his breathing starts deteriorating even when he is on oxygen in casualty, or does that make him panic. It is really hard to know how much encouragement to give someone, and when you are applying pressure to them, rather than supporting them reach an equilibrium again.

We are very lucky that Mum and Dad had a conversation very early on when he received his terminal diagnosis, with a nurse from the palliative care team. Dad signed a DNR last May and has had a treatment escalation plan written out since then. Mum keeps it in their hallway, by the phone, so we can flash it at the ambulance personnel whenever they arrive – and they always seem as relieved as we are that it is written, plain and simple, in black and white what intervention is appropriate. It got me thinking tonight perhaps we should all have conversations about what sort of life support we’d want if the need arose, rather than waiting until it is needed.

But I digress, this episode of 24 Hours in A&E featured a lovely nurse, Abbie, who was reflecting on caring for a terminally ill parent. She said:

“It would be my worst nightmare to have to look after one of my parents, if they were passing on. Here’s this person that you love so much, who brought you into this world, you know, they nurtured you to an age where you can finally start looking after yourself. They put you through schooling, you know help you get your first job, they help you do absolutely everything, every time you have a break up you always ring Mum or Dad crying, and I just think for the tables to be turned, where this person who you just think is the most amazing person in the world, is now lying in a bed, and their life is slowly coming to an end, and now you’re the one to look after them and try and nurture them and make the other end of life a little bit better, that must be just, it would be just so sad, but then maybe in a more positive way you can kind of give back what they gave you”

Josephine stayed in hospital for seventeen days. She died at home two weeks later on the 28th March 2012. I hope that by the time Josephine died, Jackie felt that the time was right. It must feel impossible to give up, but in a way I think you know when is right. I very much hope that I get the balance right between being optimistic and realistic, between coaxing and believing, between providing support and providing pressure. In the end I’m not sure it matters once we are all doing our best, as someone else said in the episode there is no real preparation for cancer and dealing with a terminal illness, I guess you just do the best you can.

This week has been a tough one, Dad was taken into hospital on Monday, there were no beds so he couldn’t be kept in so I took him home at about 7pm. We were back up to meet his consultant on Tuesday where he agreed that Dad should come off the palliative chemo he had been receiving. This is quite a signifiant decision really, but Mum and I reflected afterwards on how abrupt an ending it felt. There is no more treatment, Dad was first offered chemotherapy this time last Spring, he kept declining the offer until this Easter when he was so poorly we all thought he was going to die. The next time he was offered it he took it and he has been receiving it ever since.

For anyone who isn’t familiar with chemo it really does take over your life, the appointments, the drugs, the nausea, the infection risk, the tiredness and fatigue, the infections and other side effects. It has taken a gruelling toll on Dad’s body, which I guess isn’t too surprising given that it is effectively poison he is being given. All of that said, before he started chemo his tumour was bleeding so heavily that he couldn’t last a week without a blood transfusion, the chemo has worked some magic and despite all the other side effects, touch wood, for the moment the bleeding does seem under control. My sister’s second child is due in a couple of weeks so if all goes according to plan Dad will become a Grandad for the second time before he leaves this world.

On Wednesday we buried my grandfather, another reminder of the finality of life if any of us needed one. There was a definite sense of dress rehearsal to the event, it prompted many questions about what Dad would wish when the time came. Dad side-stepped most of this chat, with the occasional banterful comment thrown in, and when I saw him today he was still joking about what he would (or rather wouldn’t) want to wear for his funeral. My emotions about Dad’s situation swing fairly regularly from gratitude to despair, although most of the time they sit fairly in the middle at exhaustion.

As I watched the episode of A&E I think what I realised is that programmes like that make it all the more normal. Let’s be honest it is not normal to make banter about or so regularly to discuss funeral arrangements with your parents at my age, it is not normal to be up till the middle of the night in A&E departments patiently waiting for a bed, it is not normal to continue with the trivial every day matters when seconds earlier you were contemplating the fragility of life…and yet it also isn’t as isolating as it can sometimes feel, there are hundreds of people who face the same reality as us, each and every day. I guess cancer throws out any sense of normal, you readjust and live your lives with a different barometer, you dance to a different tune, and in the end you do your best, it’s all anyone can ask for.

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 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.

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.

It’s shrunk!

So the news is that Dad’s main tumour has shrunk slightly (only a couple of millimetres) and the other two have shown no significant change.

No conversation about chemotherapy either.

Not sure any of us can quite believe it. Can’t stop grinning. Not often you get good cancer news.

I’m dreading tomorrow

I took this photo just over four weeks ago, on my Dad’s 64th birthday. I’ve no idea what he was contemplating, if indeed he was, but I like to think he was thinking how awesome he is and that his fight to stay well is worth it.

Four years ago my fantastic Dad was diagnosed with Cholangiocarcinoma – never heard of it, you probably wouldn’t have, it’s Bile Duct Cancer which is very rare.  There are approximately 1000 new cases in the UK each year and prevalence rates are estimated to be 1-2 cases per 100,000 people in the Western World. Which just proves the point, my Dad is exceptional, in fact I’m tempted to add a zero and make him one in a million.

Last week he had blood tests, Monday he had a CT Scan with a contrast dye and tomorrow we (Dad, Mum and myself) are going to see his consultant. Dad’s condition is terminal and each time we see his consultant I never expect to see him again, but Dad amazes us all and has remained relatively healthy.

Just lately though Mum has admitted he is getting breathless without much exertion. Arguably it could be old age, or general lack of fitness but I think we all know that it is far more likely to be linked to the spread of his cancer. So tomorrow we’ll hear the latest results, we’ll  have more of an idea of how far it’s spread and where to, and I’m confident that Dad will be offered chemotherapy again. Six months ago he was offered it and after much thought turned it down, three months ago he was far more interested in decorating and enjoying the summer to want it, tomorrow I suspect he might feel differently.

Last week Steve Jobs died, and in the flurry of online activity that followed his death I found my way to his Stanford Commencement Address from 2005, you can watch it on YouTube here, it’s only 15mins and highly inspiring IMO:

 

Steve Job’s death, and the attention that followed it, brought home the reality (again) of loss and the impact that has on many people. There was one particular quote that has stayed with me and played on my mind all week, I thought I’d end this post with it as I think it’s always worth remembering – not just that we should all find the courage to follow our own path, but that death itself has a sense to it, even when it doesn’t feel like it.

No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new