Not the post I was thinking about writing next but isn’t that just what living with cancer is like.

After struggling with side-effects from my immunotherapy over the last couple of months, I finally relented and agreed to a short course of steroids. I was initially worried about this because my oncologist had told me it can interfere with the cancer treatment. Certainly it can make it less effective.

As always, I did my own research though and, more recent studies have shown that this isn’t entirely the case. Not where metastatic cancer patients are concerned. And specially not those who have been on the treatment for longer than six months. Encouraged by this, and with a family holiday to Northumberland coming up, it seemed like the perfect opportunity*

* The timing was actaully about a week out so it was still more of a struggle than I would’ve liked.

Still, it proved that I could live free of side-effects. If I was happy to live with the side-effects of the steroids instead.

I am not a free man

I guess the problem started when I came off the steroids (after the proposed three weeks). I can’t be sure because, before I was put on them, my oncologist, I’m told, really should have done a blood test to measure my cortisol levels*

* cortisol is a steroid hormone produced by the adrenal glands and is often called the “stress hormone”

If he had done this, the results may have shown the cause of some of the side-effects I was experiencing the time such as:

• Feeling weak;
• Feeling more tired than usual; and
• Dizziness.

At the bery least, this should have been done when I was taken off the steroids not. In the the end, my body went into adrenal crisis. That’s why I’m writing this from a hospital bed instead of home.

To explain, adrenal crisis is a life-threatening condition that occurs when the adrenal glands don’t produce enough cortisol. I knew nothing about this three days ago. What Indid know was that I felt like something was very wrong. I couldn’t stay awake, I couldn’t stay warm (and I couldn’t cool down again when I did). I couldn’t eat. I was throwing up.

Honestly, it felt like what i imagine dying to feel like – That’s why, on the morning of Wednesday 27th August, I was admitted to the emergency assessment unit at North Tees hospital.

Who’s taking stock

I’ve stayed in hospital before of course. Stayed in this hospital, and others in yhr area. It’s been a while though. I’ve managed to keep myself out of hospital for some time now, and I like it that way. I wasn’t happy to be back. Especially in such a bad way.

These things should be monitored. They can be avoided! The problems soon mounted too. Along with the adrenal crisis, it was discovered that my kidneys weren’t working again. My kidney stents too hadn’t been changed for eight months! Ideally, they should be changed twice in this time (not necessarily realistic on the NHS, but still). On top of that, I have an infection somewhere, or a possible infection. They’re all life-threating conditions for someone living with cancer.

When my stents stop working, urine backs up into my kidneys, and they swell up. Then everything else starts to swell up. Its not an ideal situation but, again, treat it early and there’s a much better chance of success. I rarely leave anything to chance these days, for more than a few days at least, unless I’m certain of the outcome. Perhaps this was one of those times I should’ve acted faster.

Really, it’s just another chapter in my story. I’ve come to expect, and accept, that these things are a part of my life now. The branches of cancer that reach out far beyond the disease itself. Think you know cancer. Think again. When you’re living with cancer, you’re living with all sorts of variables. That’s what makes it so hard. It never seems to stop still.

I went from feeling the best I’ve felt in months to feeling the worst. The good news is that everything is heading in the right direction. Slowly. My cortisol levels are going up. My infection markers are coming down. My kidney function is improving. I’ll have my stents changed in two days time which is, hopefully, gonna make a big difference.

It isn’t so scary being in hospital this time. It hasn’t been such an awful time. I managed not to be sick for a start. A stark contrast to my first stay. True, I didn’t really eat anything for the first two days (five days total). Now, I’m eating like a teenager again. It’s easy in hospital. They feed you I’ll give you that.

I feel like I know the ropes now too. It doesn’t feel new. I’m used to peeing in cardboard bottles. I prefer it. Almost. The people and staff are usually nice. This time was no exception. I met some wonderful people. Heard some some emotional stories.

The fact remains though that it shouldn’t have happened. I have noticed that the longer I’m treated, the more complacency seems to set in. I can’t change it. I’m not angry, but words need to be had. Lessons learned. For me too. This little hospital stay has helped to reset me to where I should be.

I’ve been taking my condition, and my life, for granted lately. It’s strange that it should happen that way, but it’s human nature. Don’t feel bad about it. Just take stock when an opportunity presents itself. Like now. That’s what any journey is. This is no different. I’m no different to you. I even put on weight, despite everything. That’s steroids for you.

So. What’s next. I’m not sure right now. I guess I have to wait until all my levels are where they need to be before I can go home. And I’m ready go home. For me, but also, it also unsettles my seven year old daughter when I’m in hospital. She starts year three in three day’s so we’ll have to foreworn teachers. Her behaviour can be… erratic.

I’m back on steroids so, dealing with side-effects while strapped to a hospital bed is… challenging. I’ll try and stay sane. Think about what it all means. What I can learn.

Watch this space.

** I feel like so much has happened already since this that I’ll try and get another post complete soon. I don’t want to add it to this post because it feels like its own thing with its own voice. Here’s some Ray Charles instead which has been helping me in hospital.