This post was originally written in September 2019

I know a number of people in my network are fighting various forms of cancer and (from our chats) it is clear that one of the most frustrating experiences is a lack of meaningful interaction with your consultant(s) and the sense that they hold the view that everyone should fit a particular pattern or model. It’s important that we recognise that one size does not fit all and that we will all have very different experiences of our cancer journeys. For years, I was a passive attendee at my regular consults, simply another product on the production line waiting to be processed, stamped and dispatched.

But let’s be honest with ourselves: It’s our responsibility to take control of our illnesses. Whether it’s terminal like CLL, recurring or ‘once and done’ – it’s our illness, not the medical teams’. We can’t blame them if we aren’t getting what we need out of our consults.

My biggest challenge remains the constant pain, inertia, fatigue, general neuralgia and nausea. For such a long time, my haematology consultant basically ignored these or suggested they had nothing to do with my CLL and I felt like I was wasting their time by bringing them up. That obviously leads to other feelings but I’ll come back to that another time.

However, as the symptoms intensified (they wax and wane without any obvious pattern), I finally snapped (or as close as someone as reserved as me ever gets to snapping!) and insisted we talk about it. I pointed out that research in the UK and US and reported by Macmillan, the US Cancer Society and Cancer Research UK all demonstrated that patients at all stages of CLL experienced exactly these symptoms.

Ok – so sometimes there will be symptoms you can address and sometimes they are just things you have to learn to live with. That’s fine. We can accept that. At least our issues have been noted and acknowledged. The important message (I think) is that we all need to recognise that we do not conform to a template. Our experiences will never (or rarely) be identical and a cookie cutter approach won’t bake any biscuits (see what I did there!).

It’s important to have a healthy (maybe not the best word!) dialogue with our consultants. They are only human and have literally hundreds of patients to care for. They do an extraordinary job in very difficult circumstances. But you need to make sure they understand and document how you feel and the symptoms you are experiencing. It may not be important now – but it might be later, depending on what stage you are at. Information leads to learning, learning leads to knowledge and knowledge leads to wisdom.

We all talk about the need to stay strong and positive – to find the things to be happy about instead of allowing in the monster under the bed to raise it’s head (and I think I’ll be returning to that subject soon!). Being proactive and determined (while remaining polite and respectful) in our interactions with our medical teams is part of that.

I know I am extraordinarily fortunate to still be here and I fight everyday to keep it that way. I rarely speak to anyone about my CLL but recent events have made me realise I need to get some stuff down for my own sanity. So I’m likely to be posting more of this stuff from now on. Just think of it as me venting.

Feel free to read or ignore as you see fit. I won’t be offended either way but equally I hope you won’t judge me harshly for writing it. If it offends you or you think it’s attention seeking or trying to get empathy/sympathy – just ignore it and scroll down to something else. Remember, a stiff upper lip only leads to a pain in the neck.

Stay strong, fight hard. Smile lots.