That’s the question I’ve been asking myself lately. It should be easy to answer and yet, for some reason, it’s proving tricky (SPOILER. I am).

There are many reasons you might be wondering if you are okay. Emotional numbness, burnout, difficulty identifying emotions, stress, self-neglect, overthinking… to name but a few. And all of these things can make it hard to identify a clear baseline of well-being.

I suppose the good news is that not knowing if you are okay is common so, if you are living with cancer and you feel this way, I wouldn’t worry too much. Afterall, I’m feeling this way too. It feels perfectly normal to me. That doesn’t make it easy though. Living with cancer, terminal or not, is a profoundly personal experience with a mix of intense emotions thrown in for good measure. That’s been my experience at least.

I’m acutely aware that I have been dealing with physical decline since my diagnosis. I’m a shell of the man I was running half marathons just three years ago. Mostly I know this because of the fatigue and pain I feel on a daily basis. I’m definitely weaker than I was though, and the longer I stay alive, the more I find that these things impact on my daily life.

So, how to manage this. Well, basically, you need to navigate the emotional challenges as well as the physical. It can be tempting to ignore these, especially the negative emotions that comes with living with cancer, but that would be a mistake. I find that my life is constantly shifting, priorities change, as does my focus on quality of life – something that has been seriously lacking of late – and so, we must shift with it. Cancer adapts. So must we.

These days I crave comfort, the ability to create lasting memories for my family, but these things haven’t come easy over the past six or seven months. That’s how long this bad patch has been going on. In truth, it hasn’t all been all bad of course. Things rarely are. I’ve still had plenty of good times and, while I have every reason to feel as though I’m not okay, I’m grateful for so many things and I don’t feel as though I can complain. Besides, that isn’t what this is.

As I often say, there are times in life when it’s okay to feel like you’re not coping. It can actually be a healthy thing, and a sign that you are coping. Confused. The overwhelming feelings that come with living with cancer are too big to ignore and so it’s important to acknowledge these BUT they’re so big that it isn’t possible to do this all of the time. A healthy place is to be moving from one to the other without spending too much time in either.

Look at everything that’s happened going back into last year. It started with Arthralgia, a result of my immunotherapy treatment, that caused extreme joint pain and stiffness, They gave me steroids to treat that which landed me in hospital with an adrenal crisis, a life-threatening medical emergency caused by a severe deficiency of cortisol. It’s something I’m going to have to live with for the rest of my life. Add it to my chronic kidney disease.

Then my cancer spread to my abdominal wall. An isolated spread that would require six or eight cycles of chemotherapy to get under control. The first two cycles went well, but I would end up back in hospital three times over the next two cycles. I’ve spent more time in hospital than out lately. The first stay was down to colitis and pancreatitis. Not pleasant. Not pleasant at all.

When I got out, the diarrhea continued in force which led me to become severely dehydrated and back in hospital. At home, I came out in a stinging rash all over my body which lasted for two weeks and had me reaching for the Camomile Lotion every five minutes. It’s enough to drive you to despair. When I had the next cycle of chemo, the colitis returned and I was back inside. The colitis is another thing I’m not going to have to manage for life. How ever long that may be.  

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Make no mistake, physical health issues profoundly affect mental, emotional, and social well-being. Is it any wonder I feel like I do. Chronic physical pain and fatigue wears down mental stamina and managing long-term conditions causes anxiety and disrupts daily life. These things often manifest themselves in ways that may or may not be obvious.

Mine are obvious. When I feel this way, I spend money that I don’t have. It’s one of my unhealthy coping strategies. Some people drink or take drugs. I don’t do either. I’m far too sensible these days. Or am I. I’m struggling to keep a check on my finances after all. I have to keep paying back the money that I owe, which gives me less disposable income to do the things we want to do in daily life. The important things.

Why do I do it? Because it makes me feel good and yet, if I need something to make me feel good, then surely that means I’m feeling bad. Maybe. The things I’m buying, music mostly, are things that bring me joy which certainly helps manage the emotions I’m feeling like stress and sadness (loneliness and boredom are other possible factors), but it’s only a temporary boost and any sense of control I feel in the moment soon turns to feelings of being out of control as I deal with the financial strain, guilt and reduced resilience.

Speaking of money. My money is running out. That scares me. What was once a healthy life-savings pot has dwindled. Not that I ever thought this is how it would be spent. Mind, I’ve been alive for three years, not three months, and I’ve had some truly amazing experiences so, again, I can’t complain.

I do wonder what life will be without any money though, without those experiences. Money isn’t everything but if I’m being honest, it’s made a big difference to my experience of being alive with a terminal illness. I have learned to enjoy the small things in life more, and that’s great, it’s where life truly exists, the real lasting memories that my family will remember, but there are some big things that I would like to do before I die and I’m in danger of missing out.

I’ve never asked for anything in life (well, except maybe from my parents haha) but, at some point, I think I will do a crowdfund to pay for the remaining trips I want to do – I wish I had a crystal ball that could tell me how long I was going to live. I’m only mentioning it now because it doesn’t sit easy with me, and I would only do it for the things that truly matter. The final things on my bucket list.  

One thing that I should also mention, that is more likely a symptom of the high-dose steroids I’m on, is that my eating is also out of control. I’m definitely struggling with an increased appetite, intense cravings and weight gain. Every day I try to get on top of this, but it’s hard, and I feel like I’m failing. All I can do is be kind to myself but feelings of guilt and shame are common.

I’m not sleeping particularly well either, but again, that is likely down to the steroids. It’s also well known that steroids can significantly affect mental health with people frequently experiencing anxiety, depression or severe irritability. Check. Check. And check. Could this be what this is. I’ll let you know when the delusions and hallucinations kick in. That sounds like fun at least.

The point of this exercise is about checking in with your current emotions and exploring key signs that you are struggling. This can avoid a minor problem turning into a major one and it’s worth doing. I don’t feel like I have a particularly low mood, but that would be a clear indicator that something is wrong. I have, however, been less socially active lately which isn’t like me and, while I have no problem functioning on a day-to-day basis, my days don’t feel as complete as they might.

Final thought

These feelings feel completely normal to me. I’m tired. And life hasn’t been going the way I hoped. Months can pass by which, when you’re living with a time-limiting illness isn’t ideal. It isn’t that I can’t cope all of a sudden, and it helps to have a real understanding of what is going on. I’ve always tried to listen to those negative emotions especially. It’s one of the ways I’ve been able to cope. You can too. Just remember to be honest about how you’re feeling. You might be surprised.