Brain Tumours aren’t fun, trust me I know from experience.

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……..

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11 responses to “Brain Tumours aren’t fun, trust me I know from experience.

  1. Omg gala reading has made me weep, I’m so very very sorry you are going through this if there us anything I can do please don’t hesitate to call on me xx
    Sending you lots of love and hugs xx ❤❤❤

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  2. Gala, I am really sorry to read this. All I know is that you are a fighter and if there is a way to fight this you will find it. Lots of love, Gill

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  3. Hi Gala,
    Long time no see! I think I last bumped into you at best of British at bagleys! Random,I’ve just been reading about the hard times you’ve had to face, I don’t have a lot to give the crowd funding I’ll do what I can , I just wanted to send a bit of love and positive vibes your way.i like ve in France with the family so if you ever fancy a holiday out here give me a shout
    All the best

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  4. Gala, Sweetie, I am thinking of you and cheering you on from over here in Canada. Keep your chin up, I know fighting this is awful and must be exhausting, and I wish everyone who knows you could send you a bit of their strength, but all we can do is stand and cheer you on. Love from me and Casey

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  5. My best friend Pam has an inoperable brain tumor..She found it out in November 2016..She had a brain bleed which led to the findings of the tumor..She had radiation and is now on a Chemo pill..Every scan that she has had done shows there is no change in the tumor..Hasn’t shrunk or grown..in the beginning they told her that she had from 12 to 18 months to live..Her sight and memory have gotten a lot worse..but she got new glasses and can see some better..The doctors have not changed the prognosis..But since the tumor hasn’t changed, maybe she will go into remission like you did..What are your thoughts on this? Thank you so much for sharing your story..You are truly a very brace soul..God bless you!!

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    • Hi Kathy, sorry for the delay in responding. My oncologist put me on steroids a couple of months back which has caused severe insomnia and quite honestly wiped me out. I am in the process of reducing the steroids which also has its own side effects! I think they thought I was a goner too when I was diagnosed, but its been 8-9yrs and counting. Whereabouts in the brain is your friends tumour located? Has she looked into alternatives like cbd oil? Much love, Gala xx

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