Fighting Bobby and Dobby: One year on
On this day — exactly one year ago — I posted about my brain tumour diagnosis, introducing Bobby to the world. After an initial six week blast of chemoradiation followed by six cycles of ‘double chemo’, I’ve been doing really well — I’ve seen a real improvement in some of my symptoms, particularly the challenges I’ve previously faced with my speech. My consultant said that this progress, and the fact that I’m fit and healthy (I contest that, compared to where I was before the diagnosis and treatment but hey ho…) meant I might be able to take a break from chemo. But before anything could be decided, they needed to do a scan to check what was going on. I had all my fingers and toes crossed…
Despite feeling so much better, I’d been having eye problems for the last couple weeks, and when I spoke to the nurse she said it could be a side effect of the steroids. As it turns out, I’ve been taking steroids for 10 months, which constitutes ‘long term steroids treatment.’ I consulted Dr. Google and there was a list of possible eye complications including cataracts. Just to add to my list of: increased weight gain, problems with sleeping, increased thirst and frequent urination, interruptions to the menstrual cycle, changes in the skin including bruising, stretch marks and acne… Honestly, the steroids are a necessary evil but an evil nonetheless!
So, earlier this week, the nurse booked me in to see a neuro-ophthalmologist. The appointment was on the morning of my clinic appointment, where I was due to find out my latest scan results. They measured my eye pressure, applied dilating drops and more. He diagnosed cataracts — in both eyes — but said it was up to me how I handled it and whether I decided to have any cataracts surgery.
He then went on to say — which I wasn’t expecting — is that I have a new area of tumour growth in the part of the brain that controlled sight. Not what I had hoped to hear! To top it off, I had gone into the appointment alone because of COVID-19 restrictions. I was confused, scared and anxious.
A couple of (slow!) hours later and I’m sat in the consultants office. There is new tumor progression that is growing in my optic chiasm which is where the optic nerves cross — another reason for the changes in my vision, along with the cataracts (a double whammy). Unfortunately, because this new area of disease has developed during treatment, it means the current chemo is no longer effective. And, typically, the new tumour growth is inoperable like Bobby. A small plus is that the original tumour has shrunk a little bit which means it’s chemo sensitive.
But — we have a plan. I’m going to try a different chemo drug — carboplatin — which is administered intravenously — least that means fewer tablets, I guess. I’ve also made the decision to switch my treatment to the Christie Hospital in Manchester to save me having to travel down to London twice every 3 weeks. I’m sad to leave my team in London behind, but I’ve heard great things about the Christie and I’m pleased to be having my treatment there.
Next up was to plan a holiday. The Consultant said it’s risky to go on planes (because of COVID-19) but that driving is okay. He even told us a patient who had just called from his camper van in the South of France. If that’s not a doctor’s orders for holidays, I’m not sure what is…
Dobby you’ve got a fight on your hands with high grade chemicals! And while we’re at it, Bobby can meet the same fate too! We’re just going to keep plugging away at it! Dobby (and Bobby) you’re going down…
