So it seems that after 8 wonderful years of having a dormant brain tumour, it has decided to rear its ugly head.
Since its decision to rebel and invade its way further through my brain tissue I have had to contest with the following symptoms:
Hearing loss: I spend most of my time frustratingly saying ‘what’ at people a majority of the time, usually when there’s background noise. I get so fed up with asking people to repeat themselves sometimes that after a while I just nod and make affirmative noises in a desperate attempt to pretend that I can hear what they’re saying. This sometimes backfires, and leads to me having to own up to the fact that I have absolutely no idea what they just said. I have hearing aids, but I don’t wear them because they pass a signal through my brain where my tumour is located, and the tumour has only reoccurred since I started to wear them. Call me paranoid, I know there’s no clinical proof, but who knows. Better safe than sorry.
Double vision: The muscle in my right eye seems to have weakened and I now have double vision. This means getting about is a nightmare. I now wear an eye patch at home which makes me look like a slightly deranged pirate. Particularly when I’m tired, my right pupil turns to the side which gives me a lazy eye. It’s a great look.
Acid Reflux: I have had problems with digestion and acid reflux which has caused two bouts of pneumonia and landed me in hospital in a coma twice. Due to being bedridden in hospital I have lost quite a bit of muscle, especially on my arms and legs. This means that I spend a lot of my time walking around like a penguin. It’s getting better but it’s a slow process. Acid reflux also means I’m on a very limited diet. I can’t have chocolate, caffeine, alcohol, chilli, tomato, fatty food – basically anything really tasty I can’t eat. This knocks out most tasty world foods – Mexican, Chinese, Thai, and by far the most upsetting…Curry. Curry is my favourite food, the food of the gods as far as I’m concerned and being deprived of this precious cuisine is torment.
Swallowing: I currently cannot swallow my food properly and often have to use water to wash it down, this means it takes me a lot longer than usual to eat my food. When you’re hungry and have a massive appetite like I do currently, thanks to the steroids, this can be immensely frustrating.
Insomnia: This is the worst one. I’ve had issues with insomnia for years, probably due to the tumour location, but my oncologist has put me on steroids which has made the situation worse. I often wake up at 5am in the morning and can’t get back to sleep, some nights I don’t sleep at all. I take sleeping tablets when I truly reach the point where I can take no more but they are addictive and incredibly unhealthy so are not a long term solution. Alternative medicines help but don’t always hit the mark.
I am currently on just about every alternative therapy I can find that seems feasible. To name a few: Turmeric, CBD oil, Ruta Graveleons and Calcium Phosphate, Cannabis oil, Flaxseed and Cottage Cheese, and a largely alkaline diet, although I’m sceptical about the whole alkaline diet idea if I’m honest.
Now, due to the fact that I have an incredibly rare tumour (trust me to be awkward), so rare in fact that I’ve now been told it apparently won’t be found on the internet, I think my medical team are at a slight loss as to what to do with me. I can’t have proton beam therapy apparently (I was originally looking into funding this myself), and radiotherapy will cause significant damage due to previous radiation treatment, but after umming and ahhhing they have finally come to the conclusion, further to previously saying it wouldn’t work, that mild chemo will be effective. I wait in limbo, further to having yet another MRI scan, until they finally decide what to do with me. Sigh……..