On 24th April I published a blog titled ‘Fear, anxiety and guilt’ (click here to go to it) and described my visit to see the Bladder Doctor and the Haematology Day Unit – I had one more visit that day which was to go back to the Nuffield Hospital where I had my first two rounds of chemo and see the Counsellor there.
I’d seen her a lot when I was first admitted and so she knows me and also she knows Lisa and even Lily plus she had heard plenty of stories on the other kids Sophie, Tom and George and had also met Sophie and Tom on one of their visits. I was comfortable seeing Sue as the ‘palliative care’ counsellor I saw once in hospital reminded me of an undertaker and I swear was eyeing me up for what box size I’d need – I’m sure that is hugely unfair but I never saw her again. The other lady from the hospital felt to me like she was set on getting me Sectioned and I never saw her again either.
It is also always good to see all the team at Nuffield too as they looked after me during the first two rounds of chemo and I was a very frightened little rabbit and it was an overwhelming and scary experience for both Lisa and I.
So why after all this time have I chosen to see Sue again. There are various reasons which have been building up over the last few weeks. One was following a visit at home from an old school and rowing mate and we talked various stuff including how PTSD, despite my thoughts on it, was not the sole preserve of armed forces personnel. Enough said on that as I still suspect that if my old mate let something slip that he shouldn’t then he’d have to kill me to protect the realm – you know who you are…..!! Another reason is the constant contrasts between good and less good – how we are emotionally as the pictures in this blog show, how we feel, getting some good news, often accompanied by less good news – it is so wearing on all of us.
For me at the moment I am struggling to come to terms with a more ‘normal’ life with far less frequent visits to the hospital and more of a waiting game to see how things keep going. The more I move away from trying to stay absolutely focussed in the here and now, just getting through the day, or hour, or minute right in front of me and the more I find thoughts of ‘It’ll be great to do such and such next month.’ I’m noticing that I am becoming more and more aware of just how horrific the last 12 months have been with at times considerable pain, a background permanent fear, at times an immediate sense of terror and few and far between moments of levity and relaxation. I can sit on the sofa and literally cry out with pain at what has gone on and we are still miles and miles from the finish line. It is a proper head fuck and that’s not just me, the same applies to Lisa and the kids and mum and dad who are all ever present in their way.
I also had various conversations with my Consultant over the chances of me getting out of this alive and the best I recall are that the initial odds from the first two rounds of chemotherapy were a 70% chance of surviving the treatment and a 30% chance of it killing me. My Consultant and I had a discussion on that once I had finished the second round successfully – as we put it, if 100 people had started the same day as me there would now be 70 of us in the room, 30 people would be in the ground.
We had a subsequent conversation about what my chances were of being here in a year’s time enjoying a drink in the new patio Lisa was getting built as she was so absolutely certain that I’d get out of here alive. The chances of lasting a year slimmed down some more to 60:40 and I’m not certain if that meant of the 70 people who got through Rounds 1 & 2 and if it was I think that would mean 42 of us having a drink on the patio (it’s not big enough for that but you get the point!) and now 28 more would be in the ground.
I’m not great on stats and maths but by my reckoning for 42 of us to make it to one year, then 58 of us would have to be in a box. All I ever thought about was to make absolutely damned certain I was in that surviving percentage but now I start to wonder about those that did not make it.
One chap I shared a room with died the day I was moved out of it; another chap I was in with along with one other I don’t think made it. The other chap in the room seemed to be properly on the mend and yet two weeks later I saw him in the Day Unit all but unconscious and they were moving his bed up to the main hospital haematology ward. That was before Christmas and I’ve never seen him since. An older lady who I used to chat with and her husband seemed to be wasting away to nothing, I’ve not seen her for months. You see new people coming in full of hope and a bit of bravado, it is not long before that changes and they wither before you and you realise you are looking in the mirror. It’s not pleasant and yet you are here still carrying on, knowing a percentage have not made it this far.
The chances of making it to 5 years with this version of the ‘main event’ that I have are apparently 25%. I am absolutely determined to do all I can to be in that 25% but that means that 75% of people will be in a box. How many started the ‘journey’ when I did, was it 10? 50? 100? 1000? It is a horrifying thought for me and I know of plenty of people who have fought and lost their battles and a lot less who have fought and won. It’s horrible and it pops into my head regularly, especially at night, when I get up 20 or so times to go for a pee. Sleep is hard to come by, guilt is an emotion I’m struggling to come to terms with as so far I have dodged the bullet and so many others have not – without doubt seeing Sue today helped. Approximately 10,000 people are diagnosed with the ‘main event’ each year – all types, but that is still a lot of boxes if I am to survive and this is only one form of the Big C.
Many of you will have heard my opinion, and it is only my opinion, of one or two other people on our ocean boat who simply did not pull their weight and from my perspective it was because one of them was clearly unfit physically and the other just never seemed to be able to get stuck in. People have asked me what the scariest moment on the boat was for me and in many ways it was a point in the early hours of the morning when I was in the cabin with one of the two lads and was looking at him thinking ‘It’s time to put you over the side.’ It was not based on anger or hatred at all, I was beyond that as the situation was simply what it was – he was not effective so we needed to ditch him and all his kit to try and keep the boat speed up and minimise the wear and tear on ourselves. How callous that was but I could not bear the thought of a ‘passenger’ on the team and yet here I am, a passenger in my family and with my friends and I really hate that. People say I shouldn’t think like that which I know but thoughts just pop into our head, we have to deal with them and process them.
It becomes even more of a vicious place to be when I see my Lisa struggling to stay afloat with everything else, home, me, kids, work, her own health, broken promises of help from others and so on. Her parents doing all they can to support her round the house and my parents supporting with the hospital and helping Lisa whilst all the time fretting and worrying. Then there’s the kids – I’m not going to dwell on that as it’s too private. So many friends have been amazing and many don’t seem to recognise that things they have done have been real life savers – some of the biggest ones of these being the ‘private taxi service’ to and from the hospital which helped me and took so much work off Lisa. So many others who have cooked meals for us to go in the freezer, been there to put an arm round Lisa – a lot of the lads seemed to be very keen to do that, thanks fellas, I always slept easier knowing that!!!
It’s difficult to not feel a level of guilt at how much I’ve put them out and the line ‘Yeah, but if it was the other way round you’d do the same.’ might well be true but it doesn’t always help that feeling go away.
There’s more I could write on this but once again feel the word count is running away with me – I can amazingly write even more than I can talk – I know many of you thought that was not possible before you say it!!!
Once again seeing Sue is helping put this in perspective, not least as she is someone who has had the ‘When I was on the Atlantic’ story inflicted on her so she knows my views on passengers and as she pointed out, nobody has a choice when it comes to cancer or other such illnesses – you take the bullet and you don’t have a choice. Some can be better placed to survive the bullet through better health and fitness, age, previous experiences that have helped cope, whatever it takes to get back home through the door safely, capsizes or not.
I guess the last thing we covered which I will touch on here was finding a way to accept that looking into the future a bit more, be it at what might be happening next week, or next month or in the summer holidays is ok. Be gentle on myself and accept that is going to happen more and more despite still being on the cliff edge as I am feeling more capable and more healthy – acknowledge that it is a still a knife edge and that it is ok to dare to hope, to dare to dream as it is from our dreams and ambitions that we go and ‘do’.
The guilt is a new thing and like so many things over the last year will be something that I will come to terms with and deal with over a period of time; at the moment though the pain can be acute.
Anyway tomorrow, Thursday, I’m off to hospital for a hearing test which is part of seeing where I am at before I start liver treatment; then a visit to see my Consultant to get the latest overview with blood tests and so on and lastly a visit to the Infectious Diseases Ward where they carry out the ‘pentamadine’ lung treatment which has to be done in a room at a different air pressure so the drug doesn’t affect anyone else. It’s a bit nasty.
That’s it for now I guess – I’m going to keep on keeping on with rambling blog posts and may give up some other ‘interesting’ insights into this challenge – one being the cute doggy story which I’ve already published. (click here if you’ve not seen it already – but be warned!)
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