Despair, followed by hope

This morning, I felt awful. Really weak, siezy, nasty, deplorable, dirty, sad. The fucking works, mate. I wrote this on a closed group for GBM sufferers that I had been lazily avoiding joining. It's not pretty:

Hello you wonderful folk. I am a first-time poster - it's nice to see so many people taking the fight to the Big Bad, and so many heartwarming stories on here. I'd best introduce myself: I was diagnosed with a right-parietal GBM (initially 5.1 x 2.9cm) after four 'grand mal' presentation seizures on October 27th 2017. No prior warning, other than feeling a bit odd for the previous few days, which I blamed on a trip to IKEA :)

I had an awake craniotomy January '18, combined chemo/radio and six sessions of chemo, and we appear to have severely damaged the tumour. The consultant at the next two scans (both positive and showing more shrinkage of what remains) mentioned that 'downgrading' the tumour is a possibility. So I have been on six-month checkups for a while, and we are being positive about things.

However, in the last few weeks, my symptoms have returned, and are getting more aggressive. I've needed to double my keppra intake to 3000mg/daily to remain stable, have had significant panic-driven 'seizure-like' symptoms - don't know whether they're actually seizures yet, but I'm still conscious. These are controlled with mirtazapine and occasionally a bit of lorazepam.

I am waiting back for scan results for a scan I had earlier this week, but was wondering whether any of this sounded familiar, what coping strategies you use if fits are a fact of life, or any other tips you had for remaining 'stable'. I am not due to see my regular consultant for 30 days - will my recent scan automatically trigger an appointment with my specialist? Or should I kick off and get one myself? Lines of communication are confusing, and I am much worse on the phone than I used to be.

I take Quercetin, Resveratrol, Circumin,Sulphurophane, reishi extract, CBD, turmeric oil, avoid alocohol, sugar etc etc, and I don't accept my fate. I will resist.

I'm only 40, and this disease has already taken my sister at 19. I have a worried wife and a bouncing 13-month old son, and I want to stay around long enough to walk my baby boy to his first day of big school. It's not much to ask, but on days like today I fear I'm not going to get there, and I don't know what more I can do.

Any suggestions/advice welcome. Thanks for reading, and keep on keeping on x

1111

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  Brenda Qpr Ravening I have no answers you sound amazing i I am a survivor xx

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  Lesley Fulford Hi Alex. Glad to hear another person is fighting too. 
  
  Think the process for feedback of scans will be different in different areas. So might be best to check with your clinical nurse specialist if you have one?

As you can see, it's a bit bleak. Then the postman arrived, bearing my latest experiment - CBD Vape Oil. I don't like smoking anymore, as it kills you and makes your clothes smell and is expensive beyond reason. However, I have always liked the sensation of smoking, so I consider myself a recovered smoker. I still dabble, but nowadays they just make me feel sick, so I don't bother. Nothing like a cancer diagnosis to straighten the old tie on that front, let me tell you. So anyway, I charged up my new vape pen thing, had a puff and BOOM!

Headache? Gone.

Numbness down left side? Gone.

I was astonished. Obviously I had another bang on it.

Same again, except a more relaxing version. I continued to be astonished, told Tam, and for the first time in literally months, I spontaneously laughed out loud. It was like being free for the first time in months. I felt light. Capable. Stronger. But not paranoid, or high, or anything else. Just fucking BACK.

By that time -about 1030, I had already exceeded my daily dose of my AED, keppra, and posted the above message. At 1130, I tidied the house. At 2pm, I walked the dog, and took the stairs at full speed, leading with my left (supposedly weaker) foot for the first time in this house. I have had no more Keppra since then, and I am now due to take a 'standard' 1000mg tab. I am a bit tired, but the stress is manageable at last. I love it. I am also more relaxed generally. I should have done this years ago, never mind post-diagnosis :)

We fucking continue. Come on!