Hi, I feel a bit out at sea at the moment. My husband and i have been married for 32 years and he was diagnosed last year with Grade 4 Glioblastoma, operation to remove most of the tumour, and we have finished 6 weeks of radiotherapy and 6 months of chemotherapy.
We have been to see the doctor after having an MRI scan. The doctor said the scan was good and everything is stable. And the next check up is in 12 weeks.
My husband does not remember a lot of what we have been told about the tumour, I on the other hand know everything. As the tumour will grow back and further treatment will be decided when that happens.
I am struggling to see how to move forward and live as normal as possible, knowing everything could change so quickly but only I understand how quickly things could change.
My husband talks about getting his strength back and starting to drive again (but this off the cards for at least 2 years). I would like to be happy that everything is stable and enjoy our time at home together but I can't relax, checking for any symptoms, helping him with his muddled words and helping him remember things.
How does everyone else cope with this lull, after so much activity of hospital visits?
HI Purplebadger
a warm welcome to the group. So sorry to hear about all that has been going.
I can empathise with how you feel. In fact its pretty much what brought me to this community over 5 years ago now. I supported my late husband through the 3 years of his glioblastoma journey. G was 50 when he was first diagnosed and we'd been together at that point for 32 years.
G had surgery followed by the 6 weeks of treatment and declined all further treatment after that, a decision that I had to respect. Three monthly maintenance scans became the normal routine for the next two plus years and while they are necessary they bring their own "Scanxiety" with them.
if your husband recently finished the 6 weeks of treatment please bear in mind that the radiotherapy continues to have an impact for a few weeks post treatment. G still suffered fatigue for about a month after his last treatment then began to regain his strength. He was diagnosed in Sept 2020. he was a fitness freak, marathon runner and was able to continue to run throughout the majority of his journey. In fact he set personal bests at all his competitive distances up to and including marathon in 2022. Your husband's energy levels should hopefully improve over the coming weeks.
I wrote a couple of community blogs for MacMillan that might resonate with you. Here's the links
Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community
“I’m fine”: how do you really cope as a carer? - Macmillan Online Community
Everyone copes in their own way once the activity of all the hospital visits slows down but it takes time to adjust and to process everything so please be gentle with yourselves. Be led by what your husband needs/wants but also ensure that you take time for yourself here too, Taking "me time" is essential to help you cope as this is a gruelling emotional rollercoaster ride and it takes its toll. I personally drew a lot of support from this group and a couple of others within the online community - Glioblastoma multiforme brain tumour forum | Macmillan Online Community and Cancer carers forum | Macmillan Online Community.
My own key coping mechanisms were yoga with some reiki combined with meditation, journalling and simply getting out for a walk to clear my head. Coffee with a friend always helped too. G's key coping mechanism was denial which was hard to live with but it was his way of dealing with it all
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and 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.
If there is anything I can to do support just ask. I'll be open and honest with my replies.
For now though I am sending you a huge virtual hug and lots of strength. You are coping so much better than you give yourself credit for (you'll just need to trust me on that one.)
Love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
