Glioblastoma Multiform GD4 where do I start on this painful journey. My husband a very fit & active 57 year old diagnosed in August 2022… operated on, radio & chemo followed on & then 6 months of temozolamide. Three month scans showed all clear until last August, then another round of chemo was started, all went well until January scan when regrowth was found. He is now on another round of chemo but changes are happening; weak arms and legs on opposite side to tumour, no motivation, personality changes.. he has lost all emotion. It is like his brain is firing still but it’s coming from a man who I don’t recognise. He is really needing sleep during part of the day, his appetite is off the dial with the steroids … I am so sad and scared as I don’t know what’s coming next … he has a scan this Sunday & although I have stayed so positive for all this time in my heart I feel it will be bad news when we get results on May 6th… this is a very cruel cancer & my heart goes out to anyone affected by this, sending thoughts & prayers x
HI KTL101
a warm welcome to the group. So sorry to hear about your husband's diagnosis. I can relate to your journey. I supported my late husband G through the 3 years of his GBM journey. He was 50 and a total fitness freak (marathon runner) when he was diagnosed out of the blue in Sept 2020. ( You can read the gist of our tale in my bio)
It's only natural to be scared. I was terrified throughout G's journey, You mentioned steroids- G's personality changed on dexamethasone. He became really nasty on that drug and like you say, the appetite is off the scale. He was on a high dose for a few weeks towards the end of his journey and developed steroid induced diabetes. The amount of sugar he consumed was unbelievable! Please keep an eye on things there.
GBM tumours are evil. They steal the person you love from you piece by piece. Its an emotional rollercoaster ride for all involved. By the end of G's journey even the community hospice nurse commented to me that I was living with a stranger and I was, a very broken fragile stranger who I had been with for 35 years.
As I mentioned in a separate post, scaniexty is real and its scary. You imagine the worst because you do notice small changes regularly but try to think positive here. I'm not big on advice but try to take each scan results appointment as they come and deal with whatever comes out of it. A couple of years ago I wrote a community blog for this site on the subject. Here's the link
This group is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and someone to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi KTL101
Thank you for the reply to my post … it seems we are at a similar point in our journey. Strangely, I cried more with the results of our first three month scan when there was no regrowth and then when we were told in January there was a new tumour, I just sat there and couldn’t say anything .. I just wanted to get out of the room. Scanxiety is absolutely real and, like you, I feel very apprehensive about our upcoming hospital trip on Tuesday. We also have a two hour drive each way, which also takes its toll on me and the day ahead.
I wish I could offer you words of wisdom, but it’s so very hard and being positive all the time or being the strong one, is draining - sometimes I just want to say how hard this all is to the people around me .. but I don’t .. I just keep going forward, working as usual, running the boys around to the usual sporting ventures and keeping up with my own running/gym while caring for my husband. Life does continue, as far as we can, normally, but I wake each day with the heaviness and the load of what we all carry with this disease. And I do wonder, rightly or wrongly, how long I can keep this up … but for that, I feel guilty .. it’s not me with the illness.
I will be thinking of you … waiting for results is so hard and takes so long but then weirdly, I find it suddenly creeps up on us at the same time.
Sending a cwtch and some love 
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