It’s been an odd week. At times I feel ok, especially when I’m working and focus on that. Looking after the kids is tougher but again doable. After doing both though it can be super tough. Lethargic, pale, feeling broken in the evenings, but also like I did what I needed or wanted to do in the day.
There’s no rhyme or reason though to when it will feel crap. Additionally I don’t want to make a big deal of it at all. T minus 11 till seeing my doctor. It’s odd dealing with the emotional.and physical side, and I cover that more below.
Hard or not Ive elected to blog about my condition and I now feel a responsibility to those who read it to be as honest as possible, even if it’s a little tough. I feel inspired by the many comments I get like,
‘Happy New Year Marcus Evans! I think I’ve mentioned before that you were the first “real” person I met on the internet the day I was diagnosed. I read the entire blog back in 2019′ and
Hi Marcus, Hope you are doing well! I went through your blog over the last couple of days after getting the news that my mother has gotten diagnosed with SZML. Your journey is one which inspires confidence in many and for a disease that is relatively rare is a true standout in terms of giving people comfort!
That keeps me inspired. So with that in mind I want to talk about two things. The first is mental willpower. Like many people I like it to look easy to be flippant about it and move on.
It’s not easy.
I don’t like to complain and often I find it hard to have an in depth discussion, especially with twenty different people on the same day. And people feel you want to that you need to. So what I tend to like is an open comment about how I’m feeling. If I want to talk about it I will. If not, don’t take it amiss.
On the other hand there is a danger in my method of coping that I can put up a wall so high that people can’t get in. It’s worse than that though, or can be, it can be so high that I can’t get out. Even if I want to. I last cried about having cancer six years ago. I don’t like to cry. I find it tough, like it’s being ripped out of my body despite myself. Visceral, choking sobs. I do like how I feel after I do it. Somewhat more at peace. But the process is ugly, hard and challenging.
Two nights ago I felt I needed that. Jo was in the bath so I could just be alone. I have strategies. Sometimes I find songs do the trick, like follow you into the dark by death cab for cutie, adagio in d minor from sunshine, Gravity the song from, well Gravity. I have to half trick myself sometimes into letting go and getting out, by listening to emotive music. (see wall analogy).
This time I spotted a film on Netflix. A comedy drama with Seth Rogen and Joseph Gorden-Levitt . It’s not obvious if would work, but I felt it might. It has some gross out laughs and tells the journey of someone who gets cancer and how that works with them through treatment and processing.
The film’s called called 50/50. So I turned it on. I started off with gentle recognition of a similar journey. Obviously not the same, but close. Diagnosis, chemo etc. Slowly though I kind of identified with the main character and u was enthralled by half way in. It was a hard watch and I don’t do things by halves. By the end I had cried for about thirty minutes. I never cry at films (ask Jo). The closest was the beginning bit of The Theory of Everything where Stephen Hawkins in diagnosed. I went with a whole group of friends the year after diagnosis myself and I nearly left in that first scene. I wasn’t ready. I survived though, as you do day to day.
Anyway the crying was good. The wall was down, at least for a bit. I wasn’t stoic British I was a man alone coping with his emotions, something I’ve found hard at times. The best friend character reminded me of a grosser out version of my friend (actually more than one). The trials they face and how the main character copes. The raw emotion. It wasn’t quite right. Nothing is on film, but it was close enough to work it’s magic and it gave me an out of my wall. A ladder to get to the other side and make it slightly less intimidating.
So that’s the emotional side. We have a taboo in the UK about showing weakness as men. That’s why suicide in my age group and below is so high. It’s why people can’t ask for help. The wall is too high, on both sides, and you’ve locked yourself in with no way to get out. No freedom. Just the ability to say I’m fine, when you aren’t. Or indeed you are. But no way for the person outside your wall to tell between the two.
You have to be careful and it’s a balance. I like to be in charge at work. To be the go to problem solver. It makes me happy and distracts me. I like that at home too sometimes. But you can’t wear it all the time. Work is fine I find. But it can become 24/7. It’s a shell that can be tough to crack once it’s hardened or get right balance of. In the end you drown in your shell of armour, unable to reach the person next to you. Unable to find a way out even though they are right next to you.
So that’s emotional. If you got through that then here comes the physical. I’ve found this harder in some ways to be honest. I’m 37. I should be able to ok ascend one flight of stairs without my heart rate pushing 130. I probably shouldn’t get random chillblains on my feet. I shouldn’t have to sleep like an old man when I get a gap. I shouldn’t look this pale, like a vampire, and have my glands up like a chin strap (it went down soon afterwards).
You know what though, if the emotional armour wasn’t there you couldn’t shrug that off. I’ve run marathons. I don’t like to give into fragility or pain. I have two kids I have to care for. No negotiation. And the emotional armour girds you for the physical side. So I don’t complain. I don’t find it helps. If anything ignoring the physical side, to some degree, whilst at the same time mitigating, seems my preferred way forward.
Jo had dropped down to 50% hours to deal with the childcare and working conundrum we had with school being out during lockdown. Not my condition mind. It kind of works. We will have to prepare again for treatment and see what that brings.
So you have two halves of you and both work together and you need to balance that. Your friends are your ace in the hole. Jo, who remains my rocks and takes the slack when I am ill. Lockdown had been hard for a lot of people. I haven’t even really noticed as walking isn’t something I can do much right now. We all have our crosses to bear. The people are what get you through though.
People like Gemma and Tom who gave us a steak parcel, Katy who cooks. Patrick and Helen who bought me cake. Freddy and Rob who bring me coffees and offer me lifts to london. They all make it easier. The armour slightly less difficult to maintain. The physical problems slightly better to bear. Thank you all for that, and those I haven’t mentioned as well (Madelyn, Max, Sebb, Sam, Katie, Kirsty, Jess, Tom, Tony, Debbie, Kittie Mum, Grandma) the list is a long one and I appreciate you all, on it or not.
So that’s how I cope with cancer. It’s not easy to sum up, and I’m sure I don’t do it justice. But I tried.
Other than that I have news. I can do the blood test in Witham and may be able to do the chat over teams. Its tough to tell. The professor is so busy I’m getting one sentence answers, and I’m not really sure how much to push. Still with vaccines rolling out and not having to trek in, at least for tests, it might just be looking up. As always, I’ll keep you posted.