“But You Look So Well!”

There’s been a bit of a gap since my last post, for which I apologise, as I wanted to maintain regular updates, but I have had more hospital appointments than planned and I had a week-long visit from my wonderful son, Charlie! However, there’s now a few things I want to share, both by way of general updates and an observation which I hope will help those who want to support those affected by cancer, or indeed, any other chronic illness.

Let’s start with the updates…

As I write this, I am just starting Cycle 4 of one of my drugs and the weekly increases in dose have punished my poor body. The side effects of severe pain, permanent brain fog and light-headedness have been debilitating, but I know that’s because the treatment is doing what is intended, so it’s bittersweet. My CNS, Lucy, sympathetically explained that my bone marrow was in crisis and my body working 100 times harder than ‘a normal person’ (well, I’ve never been what you’d call ‘normal’, but I got her drift!). The remedy was an increase in morphine and a change in mindset to see the pain as ‘my friend’ or, at least, not my enemy.

However, the week of my son, Charlie, visiting provided me with an additional source of medicine – laughter! He was such a delight, so patient and caring with me. Living alone and being unable to socialise for so long takes its toll and the timing of his visit couldn’t have been better. We even managed to sneak in lunch at Hickory’s Smokehouse in Shrewsbury after my Tuesday blood test results appointment, such a treat after months of my own cooking and there’s no way I could recreate these onion rings!

Now on to the other purpose of this post and this is something which I want to highlight, and it’s difficult to find the right words to do so, but I promised you honesty, so here it is! In essence, the title of this post intimates the topic – what not to say to those with cancer, or at least, not to me right now! I absolutely understand that people are saying “but you look so well” in a well-meaning way, but unfortunately, that’s not how it lands when you have an invisible illness. It can come across as suggesting that you cannot be that unwell and when one feels desperately sick, it feels like a challenge.

The other thing which I have experienced of late is people comparing my treatment regime with others they know who have had chemotherapy for solid cancers; things like “well my friend had chemo for X cancer and only had 4 rounds” or “my family member only went to hospital once a month for a couple of hours”. These statements again come from a good place, I’m sure; it’s people wanting to demonstrate empathy and understanding, but for me it’s frustrating and exhausting to explain repeatedly how treatment for blood cancer is vastly different to that for other cancers. My treatment will last for a minimum of 12 months and involves at least 2 hospital appointments a week, plus scans, additional blood transfusions and regular consultant check-ins. My infusions last all day, not a couple of hours and things can change week to week, depending on how my blood, bone marrow and tumours are responding. Believe me, I find it as confusing as you do! I hope I haven’t put off people from asking questions or giving support to me or anyone in a similar position, as that is certainly not my intention! But I wanted to explain how sometimes it feels like I have to justify my illness/pain/treatment and it adds additional stress at an already difficult time. So, an alternative to saying “but you look so well” might be to simply ask “how are you feeling today?” Instead of comparing cancer treatments of others you know, maybe just be curious and ask “how are things going for you?”. As I said, I hope I’ve chosen the right way to approach this topic, because I really don’t want to make people feel they need to avoid talking to me about my health; indeed, it’s truly supportive to show and interest and care, but it’s how one does it which can make it more caring than challenging! Finally, you may be curious about the photo at the top of this post? It’s a cushion I had made with one of my paintings on it! It’s for my neck while I have my infusions as I was finding spending several hours in a chair uncomfortable and the department uses all the pillows they have for patients to rest their ‘cannula hand’ on. And that’s given me a fundraising idea for the treatment ward!

Thank you for reading and for all your messages; it’s so helpful for me to be able to share and interact with you. You can easily subscribe so you are alerted to new posts, or add your details to the mailing list, so I can contact you. I know that things are challenging for everyone and we’re all facing a very tough winter on many fronts, so stay safe, keep warm and hold on to all the positives in life ♥