Following surgery, the results from the biopsy took a while to come back as the labs weren’t fully operational over Christmas and New Year.
At a meeting with my Clinical Oncologist in early January, I got the low-down on the make-up of the tumour cells tested. This confirmed a Low-Grade Glioma, and specifically a Grade II Diffuse Astrocytoma.
The tumour tissue was tested for the IDH1 mutation, and my tumour is IDH1 negative. My Oncologist explained that the presence of the IDH1 mutation can be a sign of more favourable outcomes and responses to treatment. Research (and the teams own experience) indicates that IDH1 negative tumours may behave more aggressively and have an increased tendency to reoccur.
Given this (and the fact that my tumour is now considered inoperable) a fairly aggressive approach to treatment is being taken. And I’m all up for that.
As with all of these things, no conclusions can be drawn at this stage and there’s a great degree of uncertainty.
I can tell you what the next few weeks and months will look like. Concurrent chemotherapy and radiotherapy for 6 weeks (33 sessions of radiotherapy to be precise), followed by 6 months of chemotherapy after a short break in-between.
At the end of the first week, I’m sharing some thoughts below.
I’ve mainly been getting to grips with my new medications (drawing the flowchart helped!!). I wiggled the toes on my left foot today for the first time since surgery and this is a pretty big leap in my rehabilitation. I’m really chuffed.
- By the second session, you start to recognise people in the waiting room. It’s quite strange going to the same place every day and before the fatigue sets in I’m trying to be productive in the mornings so my days are not only about radiotherapy.
- There’s nothing more disappointing than hearing the Radiographers coming back into the room (thinking your treatment is finished) when in fact your mask wasn’t quite aligned properly so it needs to be adjusted and treatment started again.
- I’m desperate to get my hair cut but cutting anymore off than a very minimal trim would mean my mask won’t fit properly. I’m going to wait and see what my hair loss is like but I may well join the wig-club and have some fun with it.
- I wore my all-time favourite red lipstick each day and it really lifted me. I’m not sure if I’m the only person wearing lipstick with my radiotherapy mask but I don’t really care. I haven’t been told off yet.
- Day five was bittersweet. I was pleased to have finished the first week and got my nails done to celebrate but I’ve been having seizures affecting the left side of my body in the last few weeks and had one in the waiting area. There were benefits to having it there – it was logged on my file immediately and I was fully checked over by a Doctor. I’m already increasing my anti-seizure meds but may need to start taking steroids again. Watch this space and I’ll report back.
Thanks as always for reading.
Ruby Woo – the most classic and timeless red. The cool tone suits most and whitens teeth. And it has the ability to make you look and feel instantly polished and like you could just live in Paris. High maintenance due to the very matte finish, but worth the effort in my opinion.