Young adult with glioblastoma diagnosis

This is such wonderful news and I’m so pleased for you and your family.  It’s great to hear some positivity.  Hope the next treatment on the 7th Oct goes well.

Sending love to you all xx

That is wonderful news and we all hope M enjoys his university days and eventually into the real work force world too! Stable is health, stable is life when it comes to this condition.  Wishing M a stable life ahead. 

This is amazing 

we have had 4.5 wonderful fun filled full lived years on this disease and it’s only really the last 4 months of it that the symptoms are having a negative impact so I do agree … I wish your son all the best 

I haven't been on here for around 4 months which in the nicest possible way is a good thing.  M completed his semester at university with a clear MRI in November and as of today remains symptom free.  Treatment is currently active monitoring with 3 monthly MIRs - we couldn't have dreamed of this a year ago and to have so long without him having medical appointments is great.  We have the next scan coming up at the end of January - always an anxious time but as he is symptom free right now we don't have specific reasons to worry other than the scanxiety I'm sure anyone on this forum can relate to.  

i do wonder if we are being lulled into a false sense of security and that this will come back if not this month then at some point but one thing the last year has taught me (that and the shed load of counselling I did ) is that we have to make the most of what we have right in front of us, enjoy life as we can and do what we can.  I do think that a positive to come out of this is that is has taught me to be less fearful about doing things and just go for it - be less fearful, less self conscious - just squeeze what you can out of life - none of us know how much longer we have. 

I don't know how everyone else is doing - I suppose people only tend to come on here in darker times but I hope this is of some value to someone starting their journey.  There can be a life with this condition - its not the same by any means but it is there. x

lovely to hear from you and to hear that things are stable. Long may that continue.

love n hugs

Wee Me xx

Thanks Wee Me - I was hesitant about posting, but I know when M was first diagnosed I was desperately searching the internet and found only negative stuff - I just hope its of use to someone.  We have to learn to live our lives while we can until if or when gbm returns. Much love. xxx

No need to hesitate. This community is here for you and its great to get an update especially a positive one.

xx

I haven't been on here for a while which I take to be a positive sign that we are living our lives without gbm constantly in the foreground.  I read just now someone say that after the 1st year you do achieve a new kind of normal - we are now 18 months in and I agree with that. 

M had his 3 monthly scan in January which produced an unclear result, the oncologist said there is something tiny there which could be nothing, scarring or regrowth.  To be cautious they would do the next scan earlier in 6 weeks.  M had that scan last Thursday - we get the results Monday.  Cue the sleeplessness nights - its funny that I have managed to put this at the back of my mind but once that scan has been done it kind of triggers something.  

It worries the hell out of me that M's walking has deteriorated and in my mind could be symptomatic of regrowth. 

I am also very frustrated that the oncologist appointment to get the results is a Zoom meeting - I hate the lack of face to face contact and this is made worse by the fact that M is back at university so will be in a room on his own - he doesn't want us to either come home or have us go to his dorm room for the appointment.  I understand the efficiency of these Zoom appointments but for potential bad news I really feel it should be in person meetings - not sure how common place this is or if I am being unreasonable. 

Hopefully I am just being over anxious  but going back on the gbm websites again brings home the sharp reality of this disease and makes me realise in it almost certain it will return. 

Good luck and thinking of you. In our experience the uncertainty and dread are almost worse than dealing with the actual news (good or bad) when it comes. Hoping all goes well tomorrow xxx

HI Pushkin

lovely to hear from you again. I totally understand the worry and the fear associated with any little changes you notice. You really do live on your nerves especially around scan/appointment time.  Sadly zoom appointments seem all too common. We went 2 full years without seeing am oncologist face to face during G's journey. It could be any one of four separate doctors who would pop up on the screen. If it was one particular oncologist you knew the news wasn't good. 

When we finally did get to meet one of them face to face, all of us went to the appointment. The news wasn't the best that day but the first thing the kids and I said when we were waiting on G getting some bloods done was "That guy's taller than I thought he'd be." Funny where the mind goes at times,

I hope your son gets on OK tomorrow with his appointment. I'll be thinking positive thoughts for you all.

love n hug

Wee Me xx