Hello and happy whatever day it is

Hi, your journey sounds pretty much the same as my husband’s. His recurrence was in late January, he’s just about to start his 6th chemo for this cycle, he’s also been taking part in a clinical trial. His las MRI was good, tumour was shrinking, another MRI booked for August. His mood is incredibly low, and his mobility has deteriorated quite a lot, he’s put on quite a bit of weight due to the steroids. How do you remain so positive? I wish that he would reach out to other people who are in the same situation but I just can’t get him to. Are you having further treatment, has it been discussed. 

This is the first time I've reached out too.

Is his decreased mobility due to his condition or low mood preventing him from getting out and exercising?

Will he be able to come off the steroids at some point?

The positives are the tumour is shrinking and he's on a trial.  

I've done a post and tagged it to glioblastoma and supplements.  Is he taking any supplements?

There are some inspirational stories out there. People who have had recurrence, second surgery and are still here 15 years later. 

Positivity really helps and though it can be a rollercoaster, and sleep is not always easy, for the main part I keep active and fill my time with fun!  Holidays, festivals, fun time with friends and family.  

Never stop fighting, new treatments are always on the horizon.  

I meant to say, MDT Tuesday but I think the plan is resection, radiotherapy and chemo again.  We are researching alternatives as we have a 6 week window whilst we wait for next scan.

Chemotherapy wasn’t working, so my family fought to get me home. With a care package. Over the last nine years it’s gone from terminal to inactive to in remission. Been a rollercoaster ride because it’s affected in loss of twenty years of memory, made my x having affair more manageable, and I’ve got thee lovely children and six grandchildren. 
Now living on my own cooking cleaning etc care removed. 
Just miss having someone close to love etc . Just miss that cuddle and kiss. 

Wow! What a story with plenty of ups and downs.

Obviously I can't comment too much on your love life other than get yourself back on the market the old fashioned way (join social clubs, visit the local etc.)

Regarding the cancer, you've had a massive success and it sounds like the lost years of memory might well have done you a favour.

You have a lovely supportive family around you and lots of grandkids. Loneliness is a state of mind.

I think that maybe his lack of mobility is low mood, although he won’t accept that. His steroids have been greatly reduced, he’s now only on 1mg. He doesn’t take any supplements, I’ll look into that. He was always very fit before this happened, I just feel as though he’s given up, he doesn’t have any interest in anything, he says what’s the point. I’m a very positive person, I try to get him to appreciate the things he can do but he doesn’t seem to want to know. We have 3 grown up children, but he doesn’t want to be around them too much as he says it all gets too much for him. It’s upsetting for them as they’d obviously love to be doing things with him as much as possible. 

Search out the positive stories on the internet and read them aloud to him, get the kids to do the same.

The grim statistics on the internet are apparently from 2016! Think of all of the advancements since then.

Try everything that's out there regarding counseling, supplements etc.

If you're fit as well, drag him out walking, it need only be to the end of the street initially and build him up slowly. His steroids are tailing off, but if he's had them for a while, he may get the steroid crash.

My specialist nurse, on hearing me say that I'd be back long distance walking said "I've met your type before", so I thought, you know what, I'll prove you wrong. I'm out everyday doing at least 5 miles and am up to 10 miles on the distance.

My Radiography specialist nurse told me that I'd lose my short term memory, so I started making lists to make sure I wouldn't let it hinder me and started playing brain games on the phone. I didn't lose my short term memory... So that was a win!

I do coordination exercises everyday in addition to the above.

A Keto diet is great for weight loss and, according to research, can help with longevity and mood.

I cherish everyday and live life to the full.

If all of my endeavours don't get me free of this awful curse, at least I can say that I gave it all I could and will have no regrets.

I’m a 62 man in the uk who has a brain tumour. Which has gone from terminal to in remission. My memory has been affected greatly I can remember the name they give my tumour . My son has told me eight years spent four months in hospital, where chemotherapy didn’t work and it’s was a rare form. My son and daughters fought to get me with a care package. My family thought they were going to lose me. I’ve no recollection of it, I couldn’t get out of bed and a hospital bed was in my living room. All I know is walking with a walking frame. Got stronger and now back cooking , cleaning etc for myself. As I got stronger etc the care team was slowly withdrawn until it was deemed not needed. I’ve moved to a one bedroom flat because x was having affair. 
The only thing I miss is having someone to talk, cuddle kiss etc. At times yes it feels boring, because of loss of memory etc I had to retire early. I miss teaching but had a laptop with everything on used daily for twenty years i couldn’t remember password. It’s was rebooted and one of the children are using it. I’ve got a permanent catheter even changing the bag weekly’s. 
I hope my journey helps give you and husband to beat this disease. 
I remember at first I was not a good patient, my son always telling me one morning the careers come to get me up , washed etc, I pulled the quilt up and pretended to be sleep. When I heard her going, sat up and got to bathroom wash and changed. 

I would love to do that driving license was suspended due to tablets I take. Still a bit unstable when walking with stick. Tried on line but so many false profile even men posting as woman using someone photo. 

Get yourself involved in a few social groups with people who have similar interests

Don't look at things as problems/barriers, look for ways to overcome them.