So here I am sat in front of my computer typing again. Facebook told me earlier today I wrote an entry 3 years ago today, it does that pretty often actually. The entry 3 years ago was about my chemo and radiotherapy starting the next morning. Reading that entry I look back and realise how naive I was about the treatment and the side effects. I really thought I would cope easily with them and that 2 months after it ending I would be recovered from it by end of February. I wasn’t. And whilst the first 8 or 9 days days of treatment went well and I had few real problems, it suddenly went downhill after that, in a big way requiring hospital admission. Fortunately with the intervention of the NHS and support of Macmillan, friends and family I got through it and by end of February was definitely beginning to recover. I was still very weak and suffered from bouts of fatigue, but they were not really a problem then because of my general weakness and didn’t make much difference to me.
So 3 years on, after reading this entry, I went for a medium to longish for me cycle ride and discovered that Saltdean is hillier than I thought. That some of the hills are effing steep. But as I like cycling up hills it was good to exert myself and succeed in getting to the top. I am trying to think the last time I had to get off my bike due to unexpectedly meeting a steep hill and can’t remember when it was. Today I just changed down a few gears and pedalled away till I got to the top of it. After these hills it was a ride along the prom towards Brighton into a headwind, which meant it was like going up a slope the whole way. Despite it being cold this morning I was pretty warm when I arrived back home and took some time to cool down and enjoyed a coffee and a read as I did so. I am riding less frequently at the moment, trying to do slightly longer rides and walking most days I don’t ride to see if this stops the bouts of fatigue emerging whilst allowing me to get some exercise. I don’t think it is working as I feel that I am fighting a bout back at the moment and am refusing to give into it as I have arrangement for tonight and another tomorrow to see friends that I don’t want to cancel. I know there will be a cost to this, but as I don’t have anything planned for the weekend I can rest up then.
This time 2 years ago, I was at work and trying to ignore the fatigue, which meant that I eventually got totally fatigued and ended up having a month off and breaking my collarbone and then having several months off. Two years ago, I was in complete denial that I couldn’t do it all, I was back working all the hours I did before I was diagnosed. Which meant that I basically went to work, did a couple of bike rides a week and spent the rest of the time hermit like at home with very rare socialising. I am hoping that now I am not working I can push myself and do exercise and social activities, then relax and regenerate energy. I seem to manage this better in Dalyan, there when I overdo it I can just sit by the river for a couple of days and take a gentle walk into town for bit to eat or a coffee/cay as the mood takes me or if feeling really exhausted get a delivery of tasty food. Here it seem harder to regulate energy levels, not sure why this is though.
So what else is going on, well the world is still seemingly going to hell in a hand cart. We humans really shouldn’t be left alone to run our planet I sometimes think. Not sure who we could get to sort us out, so I guess it is down to us to do so. When I was a young adult we thought we could change the world for the better and for middle class and skilled working class western Europeans, amongst others it did mostly become much better over the years. Since BREXIT, we Brits are seeing our standard of living being further eroded, this started after the crash in 07/08 and it will get worse. BREXIT partly happened because a lot of people didn’t benefit as we did and they voted to leave the EU partly as a protest against this. Sadly, they voted with the bigots, racists and fascists (sorry Alt Right) and have condemned themselves to a much bleaker and more uncertain future. The political establishment in the UK is treating the referendum result as if it was a sacred text, when in fact it is more like an opinion poll. Why an opinion poll, well because it was only ever meant to be advisory and not to be taken as a mandate for action. Of course the Maybot as she is cruelly but fairly called is ignoring this inconvenient fact and taking us lemming like to the cliff to remain in power. Why because she is being held a hostage to fortune by the rabid right of the Tory party and keeping the Tory party in power is more important than having a mature thorough debate about what is best for the country.
Compared to much of the world, the UK is a safe haven, somewhere people will risk anything and everything to reach. So in reality we have it pretty good despite the problems looming ahead. Which leads me off in a slightly tangential path:
The confrontation with death—and the reprieve from it—makes everything look so precious, so sacred, so beautiful, that I feel more strongly than ever the impulse to love it, to embrace it, and to let myself be overwhelmed by it….I wonder if we could love passionately, if ecstasy would be possible at all, if we knew we’d never die. (In Arkoff, 1975)
One of my half brothers sent me this, I won’t say which one and leave you and the other brothers who didn’t send it guessing who did, if you guess there could be a prize or then maybe not. The one who sent it thought it would resonate and we have talked previously about the impact of my cancer on me emotionally and cognitively. Whilst, I don’t see life as sacred (atheism runs deep in this one), I do see it as precious and now find it easier to notice all the small things that make life worth living, even in the darkest of times. Having your mortality thrust into your face does in my experience help you recognise all the beauty and good things in the world around you. It might be something really small like someone pausing on a pavement for a second to let you cross their path to something really big and important to you, all are equally worthy of being noticed and appreciated if possible. All of the good bits of your day when noticed in my experience make a difference to how you feel about yourself and your life. Being heard and noticed make a difference to all of us and when I think back it is this belief that children and young people need adults to notice and hear them that led me to undertake training and subsequently spend most of my working life working in different service for children and young people and so hopefully assisting them to have better life opportunities.
Coincidently, I was chatting on Whatsapp today with another relative and we got to talking about mindfulness and how helpful it is. Whilst working, I after being introduced to the approach some years ago by team member, worked to introduce to more of the team and offered them all training in the model. Mindfulness, is not magic, it is a fairly simple set of techniques that with practice will help you remain in the moment and hopefully be kinder to yourself. It has origins in meditation but without the mysticism that Buddhists and others cloak it in. My team member who introduced it to me once said she thought I was naturally fairly mindful, when she said it, looking back, I think I was more considered than mindful (discussing this difference will have to wait until another time, remind me and buy me a beer if you want to find out more). My treatment and experience of cancer helped me be more mindful and notice better when I am and when I am not being mindful. As regular readers (well if there are any left) you will know how my walk through Queens Park to and from radiotherapy and other appointments became one of the highlights of the day. I would always walk through it noticing the sights, sounds and smells as I did, as I became weaker and sicker due to the treatment, this really helped me find the strength and energy to make the walk to and from the cancer centre. Being mindful usually helped me cope with not sleeping during and after the treatment, I would monitor my breathing, notice where my body was pressing on the mattress and where the duvet was touching my body, noticing the sounds of the night. It also helped me let go of my anxiety of not sleeping and being tired in the morning, helping to reduce my insomnia significantly.
I can’t say I do regular mindfulness exercises as such, but I would say I endeavour to be mindful when I do different things through out the day. I find taking photographs a very mindful thing, I get lost in the act and notice what I am doing, particularly the composition of the shot, I could and have in the past, just use instinct to get a good photograph but find I get more satisfaction when I focus fully on the process or the aspects I want to focus on at the time. Exercise, in my case cycling can be mindful, sometimes I focus on the mechanics of cycling and performance, especially when climbing up a hill, your breathing, the burn in your legs or lungs sometimes or the good feeling of the endorphins coursing through your blood stream. other times you focus more on the traffic around you and on occasions you take in the view. It is all about being more in the moment rather than worrying about things in the future or the past which you cannot change. If you haven’t tried mindfulness I really suggest that you look into it and see if it could help you, but only if you want to. Like every approach it is not for everyone.
So returning to the quote send by my half brother, my being mindful is partly due to facing my own mortality but I think my facing my mortality has had other equally important effects on me that are not due to mindfulness but go alongside it. Re-framing or finding positives in a negative situation, has been a significant part of my self care during this time. One day I will write an entry about all the benefits of having cancer there have been for me, I know I have touched on this subject before and finding the silver lining to the cloud of cancer. Cancer does steal away a lot and if you let it, will leave you in a bleak and dismal place, by finding and focusing on the few good things that emerge from it, you can in my experience reclaim much of you life from the shadow of cancer. As I type I am heading towards a check up on Monday next week, 4 days time I will be walking home or home after finding out the outcome. As I have said before it is a weird thing to go for a check up, whilst I am positive about the outcome I have to be prepared for bad news. This is not as I have said before being morbid, just being realistic. This appointment coming up is probably contributing to my determination not to let the fatigue win over the next couple of days as I want to live my life normally and enjoy it until the appointment. If I get invited out over the weekend I will try to overcome the fatigue and go. Well time to end, as I need to started getting it together to go out shortly. Take care and remember to notice all the little good bits of your day, I promise it will help you find life better, or at least easier to bear if you are going through a difficult or challenging time.