It’s hard to put into words just how I’ve been feeling since I left hospital, but it would be fair to say that the steroids are affecting my mood. I never wanted to take steroids. Now, I’m stuck taking them for life. It’s funny how things work out. 

Of course, introducing new medication means new side-effects to get used to. It also feels like I’ve entered yet another new chapter in my cancer journey. There’s been many now. Truly, the steroids have had me feeling worse. I feel detached from what’s going on around me. I feel down. Unnaturally down. Not depressed as such, but I’ve certainly noticed that my mood is more volatile. These aren’t my feelings.

Make no mistake, this latest brush with death, and that’s what it was, has shook me up. It’s no more than that though. I think mainly it’s because it came out of nowhere. A poignant reminder that things really can change at any moment. And fast. I never saw it coming.

My body was shutting down.

Now, it feels like my mind is shutting down. I just don’t have any interest in anything. Things are not commanding my attention.

It feels like it’s only going to be temporary though. Something I will get through like many of the other challenge I’ve had to overcome. The steroids also have me eating everything in sight. Something else I’ll have to gain control of. I’ve already gained some weight, and my face is rounder. People have commented. It’s unusual for me, but not something I’m going to worry about.

I’m so tired I’m finding it difficult to sleep, which never helps. Night sweats are a problem. I’m not a fan. At the moment I’m sleeping with my daughter’s old wet sheet under me. You do what you need to do, and it saves waking up in pools of water. I’m still up every night drying myself off. Changing my sleep wear. Some nights sleep won’t come. Others, I can’t stay asleep. It doesn’t help that my latest infection has me up to the toilet every hour or less. Sleep is really important. Right now, I can’t rely on it.

During sleep, your body produces compounds like cytokines and T-cells that fight infection and inflammation.

I’ve decided not to nap. it causes sleep inertia, disrupts our natural nighttime circadian rhythms, and makes it harder to fall asleep at the right time. When I’m supposed to be sleeping. Sleep will come. The trick is to just accept it. Avoid getting frustrated by it. I’m feeling irritated enough on the steroids without adding to it. I’ve snapped at my daughter a couple times now. Something out of nothing, but more than I would like. More than she would like. She’s said a couple of hurtful things back. It’s hard for all of us.

In a strange way, I miss hospital. Not that I slept at all in hospital. I had some terrible nights. One night I got myself really worked up over my situation, My sobbing only barely audible over the noise of the machines. I miss the daily routine though. The fact that everything is taken care of for you. There’s safety in those four walls. Most of all, I miss the people. I should’ve left my telephone number. I was thinking of going in to see them. A great set of guys. Hopefully they will be home by now, getting used to their own new chapters, but maybe not. They were facing some big challenges of their own. I wouldn’t trade places with them.

People think I’m strange when I say that I feel quite fortunate really. Strange to say that given everything I’ve been through, but its true. I know plenty of others who have been through a lot more than me. It puts it into perspective. There isn’t an argument I know that can’t be won by the fact that I’m still alive. It doesn’t make it any easier though, and it’s hard to see others going through their own personal difficulties. It isn’t fair.

Paris is always a good idea

We were meant to be in Paris, not hospital, that week. Thankfully, ever since my diagnosis, I take out travel insurance, so at least I can get some money back. Not all of it. There will be financial losses to add to this. I find it best not to focus on the losses though because, they soon add up. I might not feel particularly positive right now, but sometimes I just have to fake it until the real thing returns. Besides, I’m sure each day is getting… better.

The other big news is that I had a long talk with my oncologist the other day. He seems unsure as to what the next steps should be.

How long can I stay on immunotherapy?

Do we stop the treatment now. If so, what then. Wait and monitor. Accept that if the cancer starts growing again, we blast it with chemo. As long as I’m tolerating the side-effects of my cancer treatment it makes sense (to me) to keep things as they are. For as long as we can. Perhaps, there’s a little bit of fear creeping in.

Plus, we don’t know what damage the treatment is doing. I’ve already added adrenal insufficiency to my list of complications caused by cancer treatment. This is something else that will need to be managed. It can be dangerous. Especially if I get ill. I need to be careful that I don’t suffer a repeat and end up back on that hospital ward. At least I know the signs to look out for, which leads to some mild panic every time I notice one of them.

You may experience: Lack of energy or motivation (fatigue), muscle weaknes, slow mood, loss of appetite and unintentional weight loss, increased thirst.

Everything is a balance. My immune system is doing a great job of keeping my disease stable. At my last scan there was very little evidence that I even have cancer, apart from a couple of enlarged lymph nodes. There’s a chance that if we stop the treatment my immune system could continue to keep the cancer in check. It would be a gamble, but at some point it’s a gamble we’re going to have to take regardless.

Speaking of gambles, I decided not to have my latest immunotherapy treatment. It felt too early. My cortisol levels have risen, but they haven’t risen all the way. It makes sense to me that things should be more stable before doing something that could disrupt it. I don’t know if it works like that. All I know is that when I was on the steroids and I had immunotherapy, something changed for the worse. I don’t want that to happen again so soon. I don’t feel strong enough yet.

At the end of the day, it’s my decision. It’s my life, and my health, and I’ve never felt like a passenger in my own cancer journey. My oncologist recommended having it in three weeks time. Something to aim for. Not set in stone though. Most things in life are fluid, even living with cancer. I’ve come to expect good days and bad. Stable periods, and even periods in hospital. It’s the only routine I have sometimes.

I’ve learned to accept all of these things, and more. I’ve had to. Right now, I can’t rush to get back to where I was. It has to happen slowly. Even so, I’ll end up in a different place. People don’t really understand that. It really is a constant battle just to stay sane sometimes. A lot of people aren’t there for me anymore. They’ve moved on. It’s something else I have to accept.

So, this feels like taking stock of the middle of something because, the beginning has already happened, that’s for sure, and the end is still undetermined. I’m moving forward so, in a sense, it doesn’t really matter how I feel. Besides, I try not to force it. Negative emotions are important on cancer journey. Besides, ultimately, I trust myself to find a way through, and trusting yourself is a very powerful thing indeed.

Jim