Comparing size is not helpful.

Ok – so we all worked out pretty early in our cancer journey that this particular life experience was unlikely to feature in the chapter of our autobiography entitled “Fun periods of my life”. But one thing I have discovered in the years since diagnosis is that every single one of us will have an entirely different and unique experience and trying to compare them is pointless.

For sure – chatting through your experience – of the disease or treatment or whatever – can be extremely helpful and valuable. But even if you are at the same stage of exactly the same type of cancer as the chap (or chapess) sitting next to you, your experience is likely going to be very different to theirs.

Recently, my profoundly wonderful and beloved big sister suffered a stroke. An immediate and timely surgical operation removed a blood clot from her brain. She has some residual challenges to face in terms of how her brain works but speech therapy is making huge strides.

“So what’s the story, Gibbo”, I hear you cry, impatiently. Well, the legacy of her stroke is that she suffers the most appalling and debilitating headaches. I have never experienced an acute migraine but I’m sure those that have would be able to attest to the sickening and disorientating nature of such headaches. Her problem is that she gets almost no respite from them. In the last few days, we were chatting on our family Whatsapp group when she commented that she was experiencing very significant pain and fatigue. I was curious about why she never complained about it – and she replied that she felt guilty complaining about the pain she was going through, knowing that I faced the pain and fatigue challenge every day (pretty typical – she’s always putting others first).

And here’s the point. Trying to compare my pain experience to someone else’s is completely pointless and ultimately futile. Let me explain – as a teenager, my shoulder was badly dislocated and the muscles and tendons around it were severely damaged. My experience of having lymphocytic leukaemia is frequent bouts of acute pain and almost constant fatigue. But ask me which one hurts more – I can’t tell you because I haven’t a clue. How do you quantify pain? How do you measure it? It’s not like there is a precise universally accepted, empirically calibrated scale for accurately comparing and measuring pain – not least because as human beings, we have all have different pain tolerances and thresholds.

It seems so obvious when we sit here and have this conversation (it’s just you and me here – there’s no-one else listening, I promise…). In many ways, we are conditioned to compare pain levels – frequently for perfectly valid reasons. In the management of injuries (sporting or otherwise), physiotherapists and occupational therapists would face immeasurable difficulty were they not able to ask their patients “which hurts more…” or ask “on a scale of one to ten, how much does this hurt?”. But the point here is – you are asking a patient to compare how much different things hurt them. The patient is the constant in the equation – you have a point of commonality with which to make comparison.

When two people are comparing their pain levels, there is no such point of commonality. There is nothing they share that would allow them to make an accurate comparison. And even if there was, a paper cut on the finger might hurt Person A far more than Person B for a whole variety of reasons, medical, physical or occupational.

I once had the inestimable pleasure and privilege of chatting to Professor Cyrus Cooper, who is Professor of Rheumatology and Director of the MRC Lifecourse Epidemiology Unit; Vice-Dean of Medicine at the University of Southampton; and Professor of Musculoskeletal Science at the Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford – and more importantly than all of that – an all round thoroughly good egg. He is, for want of a better expression, an expert in (amongst many other things) the management of pain. It was only as a result of a conversation with him that I realised that trying to compare leukaemia and/or pain experience was about as pointless as wearing sunglasses while riding a pushbike in torrential rainstorm (not my finest hour – but that’s a story for another day…).

So, (and thanks for still being awake): I no longer try to make comparisons about my experience of cancer or the pain that results from it. I simply accept that people experience pain and trying to compare it is futile and holds no value. I have repeatedly written about the emotions and experience of dealing with cancer (www.gibboblog.com for those insomniacs looking for an alternative to counting sheep) many of which have been replicated on this excellent Blood Cancer Uncensored site. I used to feel guilty about thinking “oh that person over there has it much worse than I do, so I shouldn’t complain too much”. As with all things cancer-related, keeping everything in balance is the key. Yes, we present a brave and cheerful face to the world and don’t discuss the health situation too much because frankly, we’ll just come across as depressing buggers that no-one wants to be around. Equally though, we all have those people to whom we can turn when we just need a good cry, chat or venting session – that’s just good proactive management of mental health.

But we also need to stop feeling guilty about people who are also having a bad time thinking we are being selfish when talking about our own symptoms and experience. We can’t feel guilty about saying “I’m having a really crap day” simply because someone close to us is apparently having a worse one. It’s not a competition. Mutual support and empathy is a far more valuable trait than guilt ridden silence.

The thing is – they’re in the same position, so they’ll understand. More importantly, precisely because they are in the same position, they are more likely to be empathetic, helpful and positive. And if they honestly think you’re hamming it up compared to the pain they are feeling, well – perhaps they have their own demons. After all – are we not all in this together?

But then – don’t take this as advice that is applicable to all – because after all, everyone’s experience is unique. And after all, that’s the point of this blog!

Stay strong. Fight hard. Smile lots.