Brain Tumour Diagnosis

Hello Billie_C

I've got a grade 3 too, I'm in the same boat & I've felt all that you are going through.BUT  i was diagnosed Dec 2012 & am still going strong.I have had to change my work pattern,but still manage to work a few hours a week.I spend  a lot of time sleeping,& drinking(which makes me much worse )but still ride my horse when i can.no,i can't do as much as before,but "accept & adapt"

as my wife puts it(she has had M.E for 24 yrs,& is my carer,poor bugger).i asked her to help me write this so this is her,Val,finishing this off. Being neurotic,panicky - try deep breathing ,just 3 times,slow down,one thing at a time,finish that job,move on ,bite size pieces,little at a time,rest between each tiny task

tiredness,lack of brain sugar,unable to do sums,plan stuff etc all falls to her.i should be grateful ...

Li has read what i put,he is not good at this,but would like to 

correspond with a similar victim.we don't know how to do private messaging,do you?

  It's not all doom & gloom,it's just a bloody nuisance!none ever said life was fair!

Look up "ikigai" the Japenese art of pleasure in small things without the burden of the enormity.!

Hello, 

Thanks for your reply. It's really nice to speak to someone that is in the same position as me. I'm not actually sure how to private message on here, I'm quite new to this so not too sure. 

Keep strong, I'm feeling a lot better today and feeling positive after reading your message. 

Thanks 

Just assume you are going to be ok. That's how I manage. I can't die I'm too busy. Positive attitude helps I was diagnosed in march 2015 and given 4 to 12 months. I don't feel I'm going to peg it anytime soon but who knows? I plan  to live til I die. I have a GBM4 so not the best lol 

Hi billie so sorry you have been diagnosed with grade 3 tumour. My daughter was diagnosed in March 2015. She described all the feelings you are experiencing.  She had a craniotomy in June 2015 followed by 30 days of radiotherapy and then PCv chemotherapy. Times were tough but she remained positive and has kept her sense dof humour which has helped her through. Now more than 2 years on she is well. Yes she does have issues but we make the most of every day. Just come back from a weekend away and we are going to Ibiza next week with her youngest son. Life has changed but she is still enjoying things in a different way and I am sure you will too. Hugs x

Thank you, I'm glad your daughter is doing well. Thanks for replying. I'm being positive always which makes me feel a lot better. 

Hello BillyC, 

My son who is now 50, with four children, had a non-malignant tumour removed in 2004 and another in 2009. It came back in May 2015 but had become a grade 3 malignant. That was removed in August then he had 34 sessions of RT with big doses of steroids to keep his brain from swelling. This gave him a ravenous appetite and he ballooned hideously, but went back to normal when the dose was reduced. He was exceptionally tired and then he hit the notorious 'wall of fatigue' which wiped him out for about a month and  if he came downstairs he could barely get upstairs to bed. He picked up a little and then started aggressive CT; six X six weekly cycles which took him from Jan-August 2016. He had the the complete set of horrors, nausea, muscle wasting and aching bones, constipation (stay off codeine!!!) body hair loss, memory failures, the shakes etc. We felt we had already lost him, it was hell. His wife is wonderful, and kept the show on the road, and both sides of the family are close and we all helped. He was so brave, we try to live up to his courage and hers. He stayed frail but gradually ate again, just cold food with no smell to nauseate him. Then he had a small operation to deal with piles, due to the constipation. He gradually picked up enough to start physiotherapy, when in May he got shingles, because of course the immune system is left very weak. The virus wrapped itself round his eye nerves and the attacks of pain were agonising several times a day and night. We kept ice-water flannels next to him to numb the pain when it started. A year after the CT finished, he is back at work, still frail and still not eating a lot, and stays in bed a couple of times a week, but he and family have just been abroad on holiday together and are leading a 'normal life' again. Fingers crossed he will get his driver's licence back in November (you have two wait two years if you have RT to the brain) 

This sounds grim but it's honest. However bad it is, you WILL get through it. You need a TV in your bedroom with subtitles so you can watch at night when you can't sleep. It takes a long time but there is light at the 

end of the tunnel, you just have to be patient, and you must try to avoid stress as that wil make you more run down. I have written all this several times on this forum for people like because I didn't know what to expect, and nor do most people. You will get through it. Rest and Patience.

I wish I could hold you tight and take away your fears, but you have to look deep into yourself and find courage. We are all here thinking of you, good luck 

Braveson 

Prettyfedup,

After a pretty crap day with bad news for my partner, you've really brightened me with " I can't die I'm too busy". 

Absolutely brilliant.

Braveson,

What a wonderfully inspirational story. 

b_b_e

Haha my sense of humour keeps me going. I need it,  I thought id either live or die but i haven't done either lol

If you click on Billies name it comes up with the option to message xx

Doh! Thank you, not so difficult after all