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.
Thank you. I appreciate you reaching out.
Time to myself is a luxury. As I mentioned I'm an indie author so my escape is that I write. I escape to safer fictional world. Feels a bit like hiding sometimes.
I guess we all do the best we can to hold it together and support everyone around us...we can take care of ourselves later.
Hugs
Xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi Daughter26. Thanks for your message. So sorry to hear about your dad. You're right - it is a rubbish time and we do all have to just be there. Milestone moments are going to be difficult - jeez Christmas itself is going to be difficult. My daughter's 21st is in Feb next year and she's stressing that he won't still be here by then. She's had a meltdown a few weeks ago that he won't ever meet any children she has. Equally, he's had a meltdown that he won't get to make a speech at her wedding. It's so sad from all sides. But one step at a time and we'll get through this as a family.
take care
x
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi all,
Being a carer can both sucks and be the most rewarding job in the world. My wife's journey even to get a diagnosis was so long that when we finally got it then it was something of a relief.
I really struggled, but Janice's cancer was really slow growing but there was not going to be a cure. Fortunately, like you, I found a place to go for help where people "got it", in ways often friends did not.
One of the key messages we hear time and time again is that people want to give their best but feel useless, sometimes even that it is unfair - hard to know where that goes really.
There is a lot of help out there if people know where to ask - my tip - take every single bit of help you can get, it helps to keep us fresh so that when we are the last line of support we are not exhausted. Asking for help is not always easy but without it I know we would be lost.
A great start on here is Looking after someone with cancer and do post on here wherever you need support or it you need some professional advice post in Ask a Nurse or ring the helpline.
<<hugs>>
Steve
thanks src60
x
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Oh 747, I feel for you. I really do. I know how hard it was leaving my husband three times at the hospital in Glasgow and not being allowed to visit, not knowing whether you'll see them again or not. As for getting answers - do we ever actually get a straight answer? I'm still waiting to find out. I feel as though you're promised the earth at the outset as far as communication goes then left floundering in the dark thereafter.
Stay strong
xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
