The fact that this year was the first since my diagnosis where there was no physical treatment planned for me, started to blind me from my own fragility I think. My eternal optimism dragged me into 2015 with the thought that I had suddenly got better! Maybe it is how the person feels who when lost in the desert, continually sees an oasis? When I am away from the hospital, my mind will not accept how weak my body has become, in fact the recent sunshine makes things even worse as I am beginning to believe that I will be sitting on a far flung beach sometime soon. Thankfully I still have a pretty hectic social life, and of course my support work keeps me as busy as I want to be, and to enable me to those things I try and have an ‘alternate day regime.’ Do something one day but rest the next, and I know that is the minimum rest I can take. Important things seem to always come and fill in the gaps, so my discipline goes frequently.
In February, my son’s wedding dominated my diary, with friends coming to stay, long days and nights and of course the celebrations themselves. I watched as my diary became filled with many positive things, but could see what would happen. Naturally my health didn’t disappoint and I quickly got sick after the wedding and am struggling to get rid of various viruses that appeared, medication having little effect now and my body taking longer to deal with most common infections. It seems my trade off for a few days of fun is a month of poor health. Even my hospital have moved my two monthly reviews back to monthly, as without fail at every appointment there is a complication to discuss.
As time has gone on, my body has been battered by aggressive treatment, it can no longer perform at the level it did before my illness, and my recovery time is getting longer. But everybody says how well I look, and how I was on good form a few weeks ago. Now here really is the issue that we face, with our unreliable health. In a lot of cases we can be up one minute and down the next, with little warning for many of us, which is very difficult for people to understand. How after all these years and all this treatment are you not getting better? I see so many people at hospital who are doing so well one month then next month they are an inpatient being pumped full of antibiotics because they got sick again. I have learned not to judge health by appearance too much, and certainly don’t assume people are well, even if they look it!
They say we never stop learning, and this disease rarely stops surprising me, but the dramatic ups and downs of our health is something I find difficult to come to terms with. “Rest,” is what I hear a lot, but there is only so much resting a man can do. It will soon be getting to the stage where I will need to rest for a week before I go out to lunch, then a week to recover! I now see my diary as a place of dread rather than pleasure, surely I haven’t come this far to not enjoy the time I may have in front of me? I do now start to wonder if I am in fact being rather unrealistic with my ambitions. The reality is that everyday I live is a bonus, and what I have been able to do in the last eight years has been unbelievable, but unexpected. If my body is now telling me it is time to slow down, it should not be a surprise really. It has served me incredibly, considering what I have put it through in recent years by trying to extend my life.
Human nature tells us that we are never satisfied with what we have, and of course I want more and better quality time, but am I being greedy? Despite my complaining, I am better off than many, who if lucky enough to survive their disease and treatment would love to live the life I have. The list of things I can’t do now seems to be getting longer, although to be fair I think this could be partly age related too! But it is becoming difficult to focus on what I can do, as I have always taken those things for granted, I think. When cancer entered my life, I was determined to try and lead as near normal life as I could, I was aware of the physical issues I faced but rather underestimated the psychological power of this beast. Despite my best efforts, it has taken normality from me, and left me with many random pieces which I am trying to make into a picture of my new life, but even this picture seems to be ever changing now.
How do you deal with the rapidly changing highs and lows in your life? Have you managed to keep your emotions on an even keel despite unreliable health? How have you found is the best way to cope with your ‘new life?’ As always it would be great to hear any thoughts you might have!