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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.
Foodie hotel recommendations please
A couple weeks ago I asked the twittersphere for recommendations of foodie hotels that are either good for staying in, or visiting for nosh. A number of people replied with recommendations, but unfortunately I’ve lost their twitter tags so apologies if you sent one of these and aren’t getting your deserved credit. Here are the hotels that were recommended:
Also in the Lake District was Lindeth Howe Country House Hotel, a former home of Beatrix Potter. Slightly further south the Star Inn, North Yorkshire was recommended:
There was one Welsh offering - Morgans Hotel, Swansea billed as a boutique hotel in the maritime quarter. There were also two Westcountry recommendations:
Cary Arm’s in Babbacombe, owned by Peter de Savary is the Inn on the Beach, with 5 AA stars and 5 Visit Britain stars it’s absolutely stunning – I’ve eaten here a few times too and it is lovely, especially when you can dine outside in the summer evenings.
The final offering was Old Quay House, Fowey overlooking the estuary.
I’m going to keep updating this post so if you have any recommendations you’d like included please just send me a tweet or add a comment. If you check any of these out please also let me know what you thought. Thanks.
Germ paranoia
My Mum and Dad had what I now consider to be an inspired approach to illness when I was a youngster…they did everything they could to ensure that as children we caught everything catchable, as young as possible! I had measles, whooping cough, chicken pox, you name it we’d be wheeled around to the neighbour’s houses in the hope we’d catch it!
As truly nuts as this may well sound it has stood us all in good stead. I am very rarely ill as an adult, I can count on one hands the days off sick I’ve taken in my working life (and two of those were for operations) and I pride myself in having a strong immune system. That said in the last year or so I seem to be a little more susceptible to coughs and colds, mostly I think since I moved into an open plan office at work!
The odd cough or cold isn’t the end of the world, I appreciate that. However, it is really difficult if you have people in your lives with low immune systems (my grandparents both in their 90s and increasingly frail and my Dad who has bile duct cancer) and I’m finding myself with a growing paranoia every time I hear someone cough or splutter at work. This week there seems to be a lot of illness lurking, and I’ve been up to that London which always seems to tax my immune system at the best of times. As I type this I’m feeling increasingly sluggish, I’m a bit achy and my throat has a tickle. I’ll be really irritated if it gets worse over night because it means it’ll ruin my weekend plans, I’ll not be able to go for a long run or visit my grandfolks or my folks.
In the meantime I’m glad I’m working at home tomorrow as that feels a little safer but if you have any old wives tales or evidence-informed magic potions or recommendations for a quick boost of the immune system I’d love to know them. Thanks in anticipation!
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 takes time
A couple weeks ago I had the pleasure of being on holiday in Beitostølen in Norway. I’ll do a post holiday reflection blog another time, but suspect it’ll be broadly similar to last year’s – which you can read here if you’re interested.
In this post I wanted to share some sage advice that I was generously given by the man in the photos. On Tuesday of my holiday, feeling somewhat bruised (physically and psychologically having tried my skis on for the first time the day before), I decided to go for a walk after lunch – following the cross country route I wanted to ski the next day. This had two advantages, firstly I could see where I was going so I knew what to expect the next day, and secondly if I followed the tracks I couldn’t get lost.
I was on my way down to have a nose at the hut in the first picture when I saw a sight I’ve never seen before, a man skiing with a sausage dog under his arm. I smiled, took a couple of photos and marvelled to myself at his ability to ski and carry a dog. Seriously impressive stuff. The man and his dogs made their way off down the track and I went to have a nose around the hut, before making my way in the general direction of Beitostølen Stadium.
About an hour later I came across the same man, and his dogs, on their way back from their ski (it really is a novel way to walk a dog). This time we stopped to have a chat, he asked if I was pleased with my photos, I explained I was, we commented on what a beautiful day it was and I admired his skiing ability – sharing with him that I’d been incredibly impressed to see him skiing and carrying his dog. He explained that the doggy was getting on, and too slow, to walk the whole lot – I laughed and made a joke about my poor skiing ability and how I hoped one day to be able to ski and carry a dog, or perhaps more helpfully carry a camera without fear of damaging it. He looked me right in the eye and simply said, ‘Don’t worry, it takes time’.
I’m not sure whether he meant learning and perfecting skiing ability takes time, or whether he meant stopping to take photos takes time. Either way it became a mantra for me throughout the rest of the week as I struggled to give myself permission to make mistakes, to need to take time to improve my ability to stand upright, and harder still to bring myself to a dignified stop.
I thought I’d share it with you guys, I think it’s a great lesson for life, especially if you’re getting impatient with the lack of progress in a situation, as a wise man on skis carrying a dog once said ‘It takes time’.
