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!
I’m not sure any of us have a good answer for this. For myself, I retreat into meditation and try to let the events just pass me by. But it’s hard. It’s lonely. No one wants to hear about what’s going on with my health. They don’t want to hear my fears or concerns. They say “you look great”. I’ve now learned the socially appropriate response, a simple “thank you”. This safe response leaves everyone feeling relieved. They feel safe to say how good I look. I make them feel good for asking. Somehow this bizarre dance keeps us connected.
And it’s probably ok. Cancer is isolating enough. One needs to keep a social network intact. And these brief encounters are relatively painless. What I find more painful are the social get togethers where I must pretend to care about the most trivial complaints that seem to comprise people’s lives. I no longer relate; so I seldom attend certain functions; and cancer once again becomes isolating.
Rather than talking about the banalities of daily life, if I talked about transcendent joy–a sunrise over the mountains, the playfulness of my cat, the graceful arc of spring tulips as they shed their petals on the kitchen counter–would they relate? Would that be a substantive conversation from their perspective? Probably not.
I realize that I have made cancer and all that it entails look too easy to everyone. But if I make it look hard, they run away. So I make it look easy, and they stay but I am not here.
Carpe Diem, my friend,
Hi Pat,I love how you so eloquently describe your own “bizarre dance,” of socialising. I agree that you can never underestimate the importance of a ‘safe response.’ Who really wants to know about our day to day battles, particularly not in a social setting where most people are there by choice to forget their own?
It is indeed difficult to share highs and lows with others where our priorities are so different. My wife is a great socialiser so I do my best for her, but I am finding it increasingly difficult now, which she fully understands. However that doesn’t make me feel any better when I am quite keen not to go out, but understand how important it is for her.
I know what you mean about making cancer look too easy, I can’t say that is what happened to me, but throughout my life I have done some incredible things and I really believe that most of us, including me, thought I would be able to swat this disease like a pesky fly! Now I am struggling, people still feel that I have another card up my sleeve:)
Suggestions? Difficult Pat, we all want/need different things and have complicated webs of relationships. Alongside being just me, I am a father, husband, grandfather, son and friend, generally they come before being myself. Maybe on occasions I need to change that?
Thanks for sharing such insightful comments, and as I think I have mentioned before, we have many things in common!
Carpe Diem Pat, Chris