So we are well into the Autumn here and the leaves are tumbling off the trees or maybe I should say being washed and blown off due to the wet and windy weather we have been having. On the plus side it has been pretty mild, often around the mid teens centigrade during the day and not falling that much at night. I am getting back into the routine of being home again, thanks to the darker mornings managing to sleep later some days, which makes a change from waking up at 6 or earlier. Last Friday I went to Sheffield Park with a friend to see all the Autumn colours and it was glorious, I think we possibly timed it perfectly, though I might go again early next week if weather is OK to see how it has changed. The weather heading up to the planned day there did not look promising but on the day, it was wet till about noon and then sunny until around 4, so we caught the good weather there. I also managed to get a couple of photos I was happy with. All in all a lovely day out that included catching up with a friend.
Since then I have seen a few of friends at various times and will hopefully catch up with more over the coming weeks, plans are afoot to meet up with a few. Other excitement, well I had my annual flu jab and I got the all clear from a routine bowel cancer screening. This screening was one of the surprises I had for my 60th birthday, apparently you get sent a kit every two years from 60 to 75. Not the most pleasant test to do but well worth it I expect. Whilst we are talking cancer, I am just under a month away from the next check up, so that shadow is in the background again. Today I attended a feedback session for MacMillan about the Horizon centre and met other services users there and we discussed what worked well, what could be improved and what they should do more of. We also discussed our personal journeys through cancer, from pre diagnosis to today. It was interesting to here how people dealt with the telling people and how open they were with colleagues, family and friends.
I hadn’t fully realised how open I have been compared to many people about my cancer and my journey through treatment. This has got me wondering about this area of living with cancer, openness v keeping it quiet or secret. There is not a wrong way to be, just a range of right ways for each individual to deal with this devastating news when you receive it. Looking back I now understand a bit more why I got so many comments and compliments about my openness about my cancer from colleagues and friends. It was interesting to hear why they didn’t want to talk about it and one of the reasons was people asking how they were and having to retell the tale repeatedly. Whilst I find it easy to talk about my cancer and recovery from the treatment writing my blog was partly started to keep people informed so I didn’t have to retell updates all the time to different people. I think in reality whilst it has done this for some people who I don’t see regularly the blog has been more a space for me to express what is going on for me in the here and now. It has not stopped me from talking about my feelings, emotional responses etc. to what is going on as I have lived the last 3 years, it has just been a different way of expressing myself. It has also been a record of things and it is surprising how many things I have forgotten in the 3 years since I started this. Fortunately, it is normally the less pleasant things I have not recalled until I read old blog entries.
Sometimes when reading them I go back to being in the moment of the blog entry, other times it is more distant and sometimes it feels like it happened to someone else. There are some things that I do not need to read the blog to remember. Being at the Macmillan Horizon Centre today also keyed me back into some memories I had put to the back of my mind. People talked about the shock of being told the news and how it was devastating. For me it was a relief being told, having my certainty of of the outcome confirmed. The earlier ultrasound appointment suddenly including biopsy and CT scan, that for me when the acceptance and knowing I had cancer happened even if not formally told, I knew from peoples reaction to me that I had cancer deep. One of my strong memories of the day when I heard I had cancer was talking with the nurse after all the formal diagnosis discussion with my ENT consultant and being told that I would be seeing the Oncology team and getting the proposed treatment plan confirmed. She kept asking if I was OK, seeming to expect more of a reaction from me, tears, anger or a combination of them and other emotions. Yet on the day, my sense of relief of not being in the limbo of not knowing for sure was the dominant thing, that uncertainty being gone meant a weight was lifted which for me cushioned the blow of the bad news. Also my blind optimism that I would breeze through treatment, be cured and only have minor side effects helped. Despite having an advanced cancer I was certain I would be one of the fortunate ones. Sure I knew the odds but I wasn’t going let them stop me being in the group that are around for a long time after treatment.
I went into treatment convinced I would be fine and I knew that from reading some research about outcomes for cancer patients people who were more positive tended cope better with the treatment and have better outcomes. This reinforced my conscious and unconscious decision that I would take an optimistic stance, which has mostly throughout the 3 years remained in place. The difference is that now I am more aware of the fact that I could get bad news at the next appointment, I don’t expect it but I am prepared for it. When I talk with some people about this, they see it as being negative, I don’t and talking with other people going through the post monitoring process many of them don’t either. It is just a realism that bad news is something you need to be prepared for while you go through the run up to the check up. There is always a sense of relief when I walk out and a mild elation now, earlier check ups and the first one it was total elation. For me, it was only in the run up to the first check up that I seriously considered that I might not be cancer free. Now, I go towards the appointment in a position of guarded optimism and a belief that whatever treatment I might need will work, that advances in effective treatments will be there for me if I need them.
We never know what lies around the corner and the experience of my cancer, my life threatening pneumonia 20 years ago, the recent pneumonia and the bike accidents and collarbone breaks have left me definitely feeling that I am living on bonus time. I also have a belief that whilst things can be tough, maybe unbearable at times, things work out OK in the end, which reinforces my position of guarded optimism. I have no idea why I have done so well and I suspect my medical team would not be able to say why I responded so well to the cancer treatment and have had nearly 3 years cancer free whilst others with less advanced cancers did not. It could be that I am too stubborn to be beaten by as pesky pair of tumours, Tabitha and Trevor as I called them then. What I hadn’t realised or to be more accurate was not acknowledging at the time was they they had already given rise to a group of smaller tumours. So the treatment successfully evicted the family of feral cells as far as I and the medical team know and they are not back yet and the odds increase that they won’t be back, but being realistic I have accept they could.
So my optimism helped me through the early part of the treatment and again did during the later part of treatment. It was in the middle part of treatment I struggled most due to the nausea and dehydration. At my darkest moments even then I was sure the treatment would be effective, it was just that I wasn’t sure that I could cope with the treatment. Fortunately, after my big blip and dip, with the support of all the professional involved, friends and family working together got me through until my determination and positivity kicked in again and helped me through the hell of the treatment and I am here today enjoying life.
This has turned into a fairly long post and not the one I intended to write, actually I rarely write what I intend when I do sit down in front of the computer and start typing. This has gone further afield than normal though. I think partly due to talking with other people who are either ahead or behind me in their cancer journey. And the bad news for you is that I still have more to say, maybe you should make a drink and wonder why you were foolish enough to start reading this meandering post.
So after I got home from the McMillan centre I sat down and read for a bit, browsed for a bit but couldn’t settle so decided to go for a bike ride as it was a beautiful Autumn afternoon. I rode to the seafront and along, then went a meandering route inland up to the race hill and as it was a clear day could see westwards all the way to the Isle of Wight and wondered for a bit if my friends that live there live on this side of the island or the other and if with a telescope I could see their house. Why that thought popped into my mind I have no idea but it did and they were there throughout my treatment with encouraging messages, so maybe that is why I had those thoughts. Cycling and exercise have also been a significant thing in my recovery and contributed to my resilience, as does photography, which I find a very mindful exercise. So today’s ride was really enjoyable, I pushed myself a bit, worked up a sweat, got up some hills easily and had to work a bit harder to get up some others. As I was near the top of one, a guy walking his dog, jokingly said something about that looks like fun, which I laughed at, despite it being a tough hill and commented that surprisingly it was the best bit. Which for me it is, I love the work of getting up the hill, well maybe not during some of the steeper harder hills but immediately you hit the top you have a great sense of achievement. Though to be totally honest, I do actually enjoy the hills and pushing myself as long as I do not go “into the red” as they say in cycling circles and run out of energy. I guess it is the endorphin rush of exercising that I like.
So how am I, well I am OK or better than OK. Still wondering what to do with the next stage of my life, thinking about options and looking for ideas as well. Life is pretty good and I am one of the fortunate ones to be here. Sure I would like to meet someone who would like to share my life with me and vice versa but whilst I am waiting I am content being single and with my life. I have many things to look forward to, despite my medical history I do have pretty good health and am able to live an active life. I have enough money to meet my needs and enough to do many of the things I want to do, which is more than most people. All in all despite a few minor and not so minor blips over the last few years I am in a pretty good place emotionally, physically and mentally. Life is good and I have many good bits to notice, which makes it even better and these good bits make the challenging days easier to live through.
paulbysea 