Thankfully they were tears of happiness and because I got myself all overwhelmed yet again.
Prince Charles was visiting NI over the past few days. My royal visit was of a different type however....... I had an appointment with oncology at the Royal Victoria Hospital this morning.
Rationally I knew I’d nothing to be scared of as I’d already had my latest scan results in writing..... and how could I ever forget those amazing words “....stable or indeed slightly improved....” Despite this, I’ve been nervous for days. The RVH doesn’t hold happy memories for me and even the car park queue can be enough to get my heart racing. The dread of having to go up has been sitting in my stomach and chest all week so I was glad to get it over with.
Thankfully I saw a lovely oncologist. I liked him. He was warm, explained things, didn’t rush me and just generally had a good bedside manner. He discussed my most recent scan with me and, to paraphrase, this is roughly what he said;
When I get an MRI brain scan with dye, it shows more aggressive parts of the tumour. They light up. In my previous scan I had two areas that were significantly lit up. The most recent scan shows one of these areas has reduced in brightness and size. The second appears to have disappeared completely. You will understand why I was a little overwhelmed. These results indicate the treatment has worked; the surgeries, the radio, the chemo. It may even be continuing to work. It’s difficult to know yet, but short of a miracle, we couldn’t have asked for better results.
We still have to see what will happen when I’ve finally been completely weened off the steroids I’ve been on for far too long, but every medical expert I’ve spoken to seems content they’re no longer serving me in terms of treatment. The harsh reality is that my body is just addicted to them now. I have gained 4 stone in weight, I feel bloated, I get painful swelling and fluid retention in my joints and stomach, and I constantly crave food, particularly sugar based items. In order to sort this out, in consultation with my Dedicated Nurse (provided by a charity. My Belfast Trust dedicated nurse doesn’t have time to talk to me....), I have been dropping my dosage every two weeks. It’s been tough going. I’m often very tired and I get horrible joint pains. Sometimes I get a bit emotional and I can get dizzy spells too. But it’s worth it in the long term and I just adjust how much I do as necessary. I’ve learnt my lessons from before and listen to my body.
Today was yet another big, emotional day. Yet again, in a good way. I now have 3-4 months until my next scan. September will be another big month for me - I should take my last steroid on 8th (but who’s counting?!), I should have a scan, and my British Empire Medal investiture ceremony is that month too. That gives me the summer to take things nice and slow, work my way off the steroids, settle myself properly back into work, and just generally get used to real life again. It’ll never be quite the same as it was again...... truthfully, I’m not sure I’d want it to be. I’ve gained too much in terms of relationships and life lessons.
A big day but a good day. Royal visits, lighting up and learning to fly....... living with xx
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