bendamustine, cancer, chemo, chemotherapy, childish, Coping, planning, treatment
When we are young we don’t know what we want to be or do. We do know we can be anything. For example my son wants to be a gardener and my daughter a vet. Last week she wanted to be a doctor. Before that a Unicorn. (Which is a little more tough to achieve but medical science is making amazing strides every day).
So from their perspective there is no limit to what they can be or do. They are just grappling with the world with their newly evolving intellect and sense and don’t see the limitations it has or the challenges.
As they grow they learn and by the time we get to 16 earnest older relatives ask us what we are going to do. Then we are non committal as we often don’t know. But we still know we can do anything.
In our twenties or late teens we taste what work is like. Get an idea of what we are good at and what we can do. The future stretches in front of us, and we don’t really think about getting to 80. Oh we may pay into pensions but we think we will last forever or that we will get to a ripe old age. You don’t understand life’s limitations still (other than raising enough money to buy a house but that’s a whole different story).
The above is why cancer is so shocking. When you get diagnosed all of the potential you’ve unconsciously taken for granted gets smashed into shards. There is often a gap between diagnosis and prognosis too, and this just makes it worse. Do I have five years? Two years? Less?
The possibly to live to your ripe old age or be anything has gone and all that’s left is the grim spectre of your own mortality. I don’t often quote the bible but the phrase ‘When I was a child, I spoke and thought and reasoned as a child. But when I grew up, I put away childish things’.
This applies to the good and the bad, and nothing is worse than having to put the positive childish things away. Cancer does that. In some ways you don’t fully recover. Especially if it’s incurable. Then you take a long time to process it and work out a new normal. It took me a year. A year of quiet realisation, periodic raging and bouts of sadness.
I did get through it though and managed to go a few hours without thinking about my cancer. Then a day here and there. You do get through it. I always thought I’d have a wobble when I actually have to have treatment, but I haven’t. Not a big one. I’ve had symptom issues and low moments, but not at the level of diagnosis. This could be because I know the old age of 80 isn’t likely to happen, and I’ve reconciled myself to less time. I’ve also got my affairs in order. (As Patrick my business partner would verify, I always plan for the worst scenario).
But treatment is going wonderfully well. I had no negative response to the second treatment. I am currently in having my third bout (three of six, which is a nice landmark) and I had rituximab more quickly with no side effects. My bloods are staying mostly good. I don’t think I’m tempting fate to state all that given the terrible six months I had before, but it’s even possible I might not need any more blood transfusions. I haven’t had one for over four weeks and so I have no one else’s blood in me for the first time since December.
So in some ways treatment is like being diagnosed again. You have the rough times, where you feel like crap and have gone downhill, maybe you have a low hb or have collapsed or whatever it is. Then you get treatment and hopefully feel better… Eventually.
So maybe planning for the worst and being positively surprised is the way forward. Who knows. I do know that the above diminishing of horizons will occur to anyone with a life changing diagnosis and you have to understand that to understand why it’s so hard and also maybe a little of how to deal with a person just diagnosed.
You do get through it though and whilst you never get back that feeling of infinite possibilities you do get joy back in other things. Maybe we should all get out a childish joy or emotion and put it back in our lives when we get the chance. Celebrate the good news with our friends and loved ones and be there when it’s bad. And always recognise that although times will be tough, you can get through it and better times can be ahead. Even if at times it doesn’t feel like it.
So one more day of treatment, then home tomorrow to wait to see if I have another drop and problems in two weeks. But I won’t dwell on that. For now my hemoglobin is 11 (normal is 12-15 and I was down to 3.4 at one point) and I can garden and run around with the kids. My neutrophils are 3.8 (they fight bacteria). Sure my lymphocytes are low (they fight viruses) but that’s expected from chemo and is why you get immunocompromised for 12 months after treatment. But for now making the most of feeling better is important, as you never know what’s ahead. And finding time to be childish.