Sometimes living with cancer doesn’t feel like living at all. These past six, seven, eight… months haven’t been much fun at all and you begin to ask questions that weren’t there before. Like, is it worth it? The answer, for me, will always be yes. Nothing is going to take me away from my wife and little girl. Still, it goes to show how bad things can truly get.

I’m writing this, yet again, from a hospital bed. Different ward this time, but nothing feels different. In fact, I feel stuck. Trapped. Claustrophobic at times. Normally on an evening when visiting is over and before I settle down to whatever sleep you can acquire in hospital. The woman in the room next to me is quite mad. She shouts out at all hours. Calls that seem to fall on deaf ears because, despite all her cries for help, no one, it seems, is coming to help.

Yesterday evening was bad. I couldn’t settle. I felt restless. Anxious. I don’t know how many trips I made to the vending machine. Crisps. Chocolate. Pop. None of it helpful. Only made me feel worse. These are the things we do as people though. The things we know aren’t going to improve the situation, but we do them anyway. Why do we do that.

The actual act of getting off the ward alone would have had more benefit, but I’ve never been very good at doing things without a purpose. I’m not one for just going for a walk. I need a purpose. A route. My wife can happily just set off and see where the wind takes her. I’m quite envious actually. There’s a real exploratory quality to it which I’m missing. Am I not a person who likes to explore? I like to explore the thoughts in my mind. My internal world. But not my external world. What does that say about me.

I managed to settle a little after a while and watch a couple of episodes of House starring the excellent Huge Laurie. I can’t believe I’ve never watched it before. Now I’m obsessed. I was stuck for something to watch after the equally excellent The Night Manager and this just happened to pop up on one of my streaming apps. It’s helped me a lot during my latest hospital stay because there really isn’t much to do to fill the countless hours that make up a hospital day and night.

I’m also reading Keep Laughing, Chris McCausland’s autobiography. It’s such a good read. I never watched Strictly Come Dancing although I’m aware of it of course. I first became aware of him through another programme he was in called Wonders of the World I Can’t See and he captivated me in that. He’s a remarkable person. Inspiring, and not only is it a great read, but it’s also made me think about how my daughter interrupts what is happening.

Unlike Ida, Chris’ daughter has never known a time when he wasn’t blind. That makes a difference of course, although Ida was only four when my life changed so I’m not sure she remembers much before this. He talks about what his own expectations of him as a dad were, something which caused great fear because he realised he wouldn’t be able to do the things his dad did with him.

I know that this can cause a great deal of anxiety. Ida wants me to be able to pay with her in ways that I’m not always able to do which can make me feel inadequate as a dad. In the moment. That’s not how I feel. I know I’m a good dad. Importantly, she thinks that too. And that’s the thing. Life may not be exactly how I would like it to be, but that’s my normal. It isn’t Ida’s normal. Chris talks about this. About the innocence of a child’s mind and how it filters out all the things that just aren’t important.   

We lose that ability somewhere in adulthood. Everything becomes important. When you look at the world through a child’s eyes though, you realise that all those fears you had are just inside your own head. Not in Chris’ daughter, and not in Ida’s. She doesn’t likely understand why. It’s just the way things are and I think she gets that. It’s her normal. Still, she struggles when I’m in hospital. I do too.

I never used to and I wonder what changed. Is this my new normal. I’ve always been really good at coping with the challenges that have been thrown my way, but lately there have been so many. My quality of life has suffered. And yet, as I’m typing this, I feel strong, Likely because I allow these emotions in. The good and the bad. I want to know what they’re trying to tell me. Scratch beneath the surface and all is not as it seems.  It’s not the hospital stay I’m struggling to cope with, it’s my situation.

Little things can make a big difference too. I’ve had intermittent internet these past six days. Enough to browse but not to stream, other than House for some miraculous reason. This in itself isn’t the biggest problem I have right now, but not being able to listen to music has been tough. I tend to have music on at all times and not having it has left me slightly on edge. This morning I’ve had internet and so the music is flowing. It’s helped my mood no end. That and the sausage sandwich I snuck in the canteen.

Physical graffiti

I guess that captures where I’ve been mentally so, that just leaves the physical to discuss. I forget where we were last time I posted (I could go back and check, but I’m lazy) so forgive me if I repeat myself. I think since I last updated this, I’ve been back in hospital on one prior occasion to this. That was just a brief stay, overnight, because I was dehydrated. diarrhea will do that to you and, because of my kidney disease, I simply can’t always hydrate myself adequately. That’s just the way it is.  

After that I developed a rash all over my body. It was incredibly itchy and stung. It was enough to drive me to despair. It reminded me of the time my wife decided she wanted to make our clothes smell nice and so switched from our trusted to non-bio to something perfumed. Me, with my sensitive skin, came out in a rash of course. The situation was bad, but made worse by the fact that my wife then rewashed everything in non-bio, but still used the new fabric conditioner so it didn’t help at all. Boxer shorts and all everything. Maybe I’d done something to upset her.

This new rash finally started to calm down, just in time for the diarrhea to start up again. Much worse this time, although it came on gradually. It was accompanied by bad abdominal pain and I was losing my appetite, a sure sign that something is wrong. I went to see my gp who arranged a couple of tests and sent me home. Two days later I was back in hospital.

They hooked me back up to fluids and… nothing happened for four days when I finally had a colonoscopy. For anyone who’s never had the pleasure, it isn’t as bad as you might think, even without the sedation. It isn’t pleasant though. Like most things, it just has to be done. They give you a gown and what looks like cycling shorts with a hole cut out of the backside. Think Village People, and then after a quick bit of jelly, in the camera goes.

On the screen I could see what looked like really nasty inflammation. No wonder I’ve been feeling so bad. He took six biopsies and then retracted the camera. The whole thing took maybe ten minutes at most. Mind, the camera didn’t go all the way. The colon can be up to 5 foot long! I’ve had a full colonoscopy before, again without sedation, and that was weird. Especially when the camera started sticking out of my belly like a scene from Alien (or Spaceballs ha).

They suspect that I have ulcerative colitis. Yippee. Something else to add to the list. That’s the thing about staying alive, you get to add other health conditions along the way. Usually caused by cancer treatment. The cancer treatment that has kept me alive so, I can’t complain too much. The biopsies should confirm. Treatment, because it’s severe, is corticosteroids. I can’t seem to get away from them these days. Looking online, there are loads of treatment options for managing this long term although I don’t really know what the future looks like right now. Worry about that another day. Mostly I should be able to manage a lot of it with diet. Hopefully.

So, that’s where we are. Back on steroids and I will have missed two cycles of my chemo tomorrow. I have an appointment with my oncologist tomorrow as it is. It feels like a big one. He should also have the results of my latest scan and I’m really hoping that everything is stable. It will be a small miracle if it is, but then miracles happen every day. If it, I’m actually going to ask to delay it by another two weeks to give me time to recover and to go to Scotland with my wife.

We have a trip booked to ride the Far North Railway Line from Inverness to Scotland. It’s meant to be one of the most beautiful and scenic routes in the world and I can quite believe it. I love the Scottish Highlands and if the West Highland Line was anything to go off then we’re in for a treat. It’s been high on my bucket list for quite a while now so I’m keen not to have to cancel it. You book these things in good faith knowing that things can always change, but it would be a real boost to me right now, and that’s important.

Final thought

I feel like I’m often having make decisions that balance my life and my health. I still need to live. I need to feel like I’m living, and that’s been the problem lately because no doubt my life has become a lot smaller than it was. I have every reason to live, my little girl gives me that, but I want to enjoy myself too. If the cancer isn’t stable then I don’t know what that means. I’ll leave that for the discussion with my oncologist.