Pain and fatigue have been my most difficult side effects of treatment. For the sole reason, that they are technically invisible to the outside world (including the docs). The colitis or the skin rash I experienced previously, were visible and therefore quickly treatable. A lot of the anxiety of trying to articulate a problem, or convincing medical professionals that it even exists, was taken away with my previous side effects. Most recently, I’ve been experiencing chemical fatigue, and intermittent acute abdominal pain. Trying to communicate the symptoms of these with my family and doctors has been a real challenge.

Firstly, there’s an element of insecurity. Have I exaggerated? Am I being a drama queen? My most hated question is definitely “what is your pain level on a scale of 1-10?” Surely every person’s scale is completely different, there’s nothing to go on or compare against. Not only do I doubt myself, but I then become paranoid that others are also doubting me. Do colleagues think I’m just being lazy and can’t be bothered to come in to work? Do doctors and nurses feel as though my pain is, in fact, minimal and that I should just learn to live with it? Does my husband think I’m trying to get out of doing the dishes?

I like to think of myself as having a relatively high pain threshold. I bet most people think that of themselves. But when you only have your own past experiences to compare against, there’s not many other ways in which to articulate this. For me, labour and delivery was luxury in comparison to having gallstones for example. The persistent and gripping pain of gallstones I found almost impossible to bear. It could be a factor that I also didn’t quite know what the pain was at the time, and also nothing good was going to come from it (like a baby does with labour).

The abdominal pain I experienced during the night last week was on the same scale as the gallbladder pain. Rich was there, and could see that I wasn’t exaggerating. (Stupidly, perhaps) this made me feel more authentic the next day when I was trying to explain to hospital staff what it had felt like. It’s the type of pain that leaves you helpless, unable to move or talk, having to concentrate on your breathing whilst breaking out in cold sweats. These episodes always completely exhaust me, and I’m good for nothing for the next 5-6 hours. The anxiety and fear that accompanies this type of pain, can’t make things any better. When you feel that sort of discomfort your mind assumes (rightly) that something must be drastically wrong.

It sounds really doom and gloom, and of course in these moments it all feels a bit much. However, I’m lucky in the fact that doctors can’t seem to find anything majorly wrong – the tests always come back normal, and it is put down to inflammation of different organs from the immunotherapy treatment. Dr F says that whilst not a fun thing to endure, he actually see’s it as a real positive. A sign that my system is responding to the drugs that they are giving me. Every cloud I guess…

What I’m experiencing also isn’t chronic pain that lasts continuously for days. Some people have to deal with that, and I honestly don’t know how they manage. I’m currently having about one episode a week, but am trying different medications to hopefully lessen the frequency, or at least manage them better when they do come on so suddenly. It has just made me think a lot about how people manage to communicate what they are actually going through to medical professionals, as well as to family and friends – especially when symptoms aren’t visible. When you find it difficult to communicate, or if you can’t communicate at all (very young children, extremely sick patients, elderly members of the public) how can we be sure that people aren’t experiencing huge levels of pain and discomfort without us knowing? The thought of this makes me shiver, that there are most likely individuals out there suffering, and without a way of articulating this, so that doctors can actually do something about it.