GBM grade 4 support pls!

[LucyHardy]

new to this chat room and total novice at brain tumours. Seem to have landed the biggie!

diagnosed on 19 March, frontal lobe tumour removed on 29th. I started chemo and radio on 8 May and finished on 20 June.

MRI on 30 June which was reviewed on day I restarted chemo and which showed a patch where tumour had been. Doc had already said the MRI would ‘not show much’ and that the report would state that there were changes in the brain but wouldn’t distinguish between effects of radio and disease progression. Was still a massive shock to hear it but slowly coming down and reapplying logic!

I feel absolutely fine physically and am using that as my only metric……. on my strong says. And other days I panic!!!!!!

I have so much to live for and feel and look like me!! Would be good to chat to others in a similar position!!

i feel totally positive, mostly! Would love to hear from anybody else who is determined to win this bitter battle!

[BeLoveAndHope]

Hello Lucy, Thank you for reaching out. (My first time here!) I had the SOC last fall: surgery, chemo & radiation and since January I take a med for seizures. I am doing a number of alternative things things: Keto diet, Life Wave, EE (Energy Enhancement Systems), plus tons of supplements and at night I take THC/CBD which helps me sleep. I have had very low energy and very low appetite and lost 20 pounds. However, with the alternative things I'm doing I am now eating, beginning to gain a bit of weight, and am getting at least 5,000 steps / day. That said, I know how serious this diagnosis is and things could change any moment. Would love to hear more about what you are experiencing/ treatments, etc. Keep taking care of yourself and reaching out. ❤️

[Tansi75]

Hi Lucy,

Well done for staying positive about your condition.

I was diagnosed with a grade 4 GBM in May 2010, so know full well that staying positive and taking everything that is to come one step at a time is key to living a 'longer and better life'.

Can I suggest you download the Brain Tumour Charity's BRIAN APP, where on the discussion board you will find numerous posts I have placed regarding my journey and advice about diet, and the alternative anti-cancer treatments I have been using since 2010.

If you have any questions, please leave a reply or post on the BRIAN APP and I will get back to you.

Stay positive and laugh as much as possible. 🙂

[LucyHardy in reply to Tansi75]

Thx so much. I see you are something of a celeb on here and on another group I am on. Easy to get lost in all this. What do you make of all the oils and herb protocols? So hard as desp to live but know if I were sensible I would know it’s snake oil…. But……! Shall browse some more. Supposed to be at work hours ago! Gad!

[Tansi75]

Hi Lucy,

I don't know anything about oils and herb protocols, but have always believed it is worth trying something, if you believe it works. Don't forget that a placebo can be just as powerful as an actual drug. A saying from one of the Goon Shows comes to mind 'it's all in the mind you know'.

There is a lot to be said for the power of the brain, after all it is still one of the least explored areas of the known universe. To quote Oddball in the film Kelly's Heroes one of my favourite Clint Eastwood films 'positive waves'. 🙂

[Denni60]

Hi Lucy, it had been a year now had 85% tumur removed radiation and Chemo I must say I am feeling good looking well, the only thing is 2nd week after having chemo I am weak and tearful. All through somerimes very wonky and unbalanced. Sometimes I feel that I cam going to fall over. But mostly stopped sugary things I eat lots of salad, meat fish eggs. No carbs if I can help it. Very strict diet. After radiation I had a mark which was 1cm then grow to 1.5cm. Changed diet now for three months there is no change. I sleep with a hat on at night, in a slim panty liner I use castor oil. Every night religiously and drink Sour sop tea and mornings tea. I am doing well keeping positive and thankful for being alive every day really important, when able I try and go for walks. However I do get tired. Hope this helps!