Hi
this is my first post and to be honest I can't really believe I am writing this.
On 26 August this year my husband told me he needed to speak to me about something and dropped the bombshell that he'd been to the doctor behind my back and had a CT scan which had shown something in his brain. That was at 8am. He had an appointment for 1pm that day for a further CT scan and an MRI. By 5pm, he'd asked me to meet him outwith the house and the hearing our son. We arranged a place to meet about a mile from the house and as I walked along the road my mind was imagining all sorts. I'm an author and even I couldn't create the horror story that has unfolded in the weeks since.
As I sat in the passenger seat of the car, my husband told me that he'd had it confirmed that he had a primary brain tumour located in the Broca's area of his brain. My heart broke for him, for our kids and I guess for me a bit too. It was a primary brain tumour that had killed his mother in 1993 - a death and an experience he's never really got over if he's being honest with himself.
On 2 September we celebrated our silver wedding anniversary. On 2 September he got a call to say that the neurosurgeon's at INS Glasgow had discussed his case and weren't going to waste time with a biopsy. They were opting for a craniotomy and a provisional date of 9 September was given. Not the anniversary gift either of us expected.
On 4 September we met the speech and language therapist (she's was an absolute superstar over the next couple of weeks) and the neurosurgeon (a larger than life character that I warmed to immediately - but he shoots straight from the hip) He was direct and honest - all the indicators pointed to this tumour being a Glioblastoma and it was going to kill my husband within the next 12-15 months ( assuming he opted to complete a course of radiotherapy and chemo in combination) or by Christmas if he didn't opt to treat it.
On 9 September my husband had an awake craniotomy to debulk the tumour.
The first couple of weeks were rough. There were a few set backs including a readmission to hospital due to post op swelling - a traumatic night and car journey my family will never forget. Then a week or two later he developed blood clots in his lungs - cue another two nights in hospital.
On 12 October he started his radiotherapy treatment and the oral chemo started the following day. We're currently in week 3 out of 6....
I've listed the dates to give a scale of how fast this has all unravelled...how quickly my family's world has come crashing down.
My husband's career in IT centred around communication networks and voice comms - this tumour has impacted his speech and language centres, his ability to read and understand and his eyesight has also been compromised.
He's a fitness fanatic - a marathon runner, a cyclist, a kayaker to name a few favourites.... most of these are now nigh near impossible although he's walking about 12 miles a day (his coping mechanism)
I guess where I'm going with this is that I'm beyond heartbroken for him. I feel beyond useless. This week he's been in a dark place and verbally lashing out at me I hope in frustration and not seriously meaning some of the things he's said. He has refused all offers of emotional support from the hospital and his employer and he's overly critical of myself or my kids needing support too.
So here I am....reaching out with this horror story looking for some words of wisdom from this community on where I am supposed to go from here, how am I meant to help him if he keeps shutting me out, how do I help my kids through this (they're 20 and 22 - but still too young to have to go through this). What happens next....
Any words of wisdom greatly appreciated
Apologies if this has been a rambling first post.
HI Juppy, thanks for your kind words. I am a reasonably resilient person and have a good support network of friends which helps. Although they can't necessarily relate to all that's going on in the world they can help me to retain my "me-ness". Sound advice to treat the backlash as an observer- I like that school of thought and will try to adopt it. Several friends have advised me to take care of myself first. I know I'm the lynchpin here. One of them gave me a great piece of advice and I paraphrase- they said to keep writing (I'm an indie author), to take lots of photos,, lie on the beach and to stare at the sky longer than I would normally. And to be honest writing is my escape from the real world. it always has been but it's been a Godsend over the last couple of months. I try to take time outdoors each day, walk on the local beach and take photos of the world around me. We all need to find that something that gives us a break and lets us recharge our batteries. I hope you find something like that to keep you going through this journey. The road ahead for all of us isn't going to be an easy one but already I can see that this forum is also a great place to find support. Stay strong. love n hugs x
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi Mines.a.coffee thanks for your kind words. I have reached out to our local hospice today via our GP. They need to refer you apparently. I've also reached out to the hospital treating my husband as the lack of communication from them is bordering on the "unsafe". We'll see where that goes. I'm not big on asking for help...never have been never will be...but I'm sensible enough to know when I need to. Just now I recognise that I need to. The named nurse won't talk to me. My husband won't allow me into his appointments. We've only met the consultant once and I learned today that this isn't quite in line with the "normal" set up of appointments etc. Why is getting information such a challenge? Life is challenging enough! big hugs x
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
