Can't quite believe I'm posting here....

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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   and welcome to the Online Community, a Community that no one ever really plans to see themselves joining, and so sorry to hear about your husbands diagnosis.

    Your story is not surprising as we often read these heartbreaking journeys far to often.

    A cancer diagnosis brings a lot of confusion, stress and many questions but talking with other people who are on the same type of journey helps a lot.

    I had a totally different type of cancer but the Community has various support groups so can I direct you to our Carers only and Family and friends groups as these are great places to connect with others supporting family through their cancer journey.

    Follow the above links then choose ‘click to join' or ‘join’ when the page opens.

    You can then introduce yourself, post questions or just  join in with existing discussions by clicking on 'reply'..... I suggest you copy and paste the tract from your first post.

    Its always good to talk and the Macmillan Support Services provides lots of information, support or just a listing ear.

    The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00 have a look by Clicking here for more information.

    You can also email them, use the online chat and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

    All the very best.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Oh gosh Wee Me I’m so sorry to read your post and your dear husbands diagnosis and I hope things get better for him very quickly with the treatment.

    This disease is a terrible thing and robs people of so much not just their physical health. It takes everything out of us dealing with it, our strength, energy and enthusiasm for everyday things.

    i have been in your position and your husbands so can recall being on both sides of the effects of this disease. Being beside a loved one going through cancer treatment is really, really tough. Be assured that your husband is not lashing out at you or your children, he is lashing out against the injustice of the cancer, unfortunately you guys are just the nearest thing he can lash out at. The cancer is frightening for him and taking away so much of the life he cherrishes, his job, his sport but most of all the life he has with you and your children. It is really hard to do but you must try to not take any bad things said to heart, he won’t mean them and you know they are completely out of character.

    Your husbands recovery is to a large part dependent upon the support around him. He will want to deal with the illness in his own way but needs to have you there in his corner, as you all are, at the time he is ready to.

    my own recent diagnosis made me feel less of a man, how could a mastectomy for a man do this I don’t know but it did. It worried me intently and I felt I had let my partner down even though I knew a mastectomy for a lady was far more traumatic and life changing than for me. I felt ashamed in some way I had the disease, it was like a weakness and I never want to be anything less than the perfect partner. 

    it will be a tough time and you will need lots of strength all of you, but you will get through it. Take one step at a time, don’t try to write the whole book in one sitting, one page, one chapter at a time.

    wishing you all the very best and do keep reaching out here, it is a great place to be able to rant, vent your frustrations and know you are with people who understand

    take care

    mark

    Cancer may affect my body, but I won’t let it affect my spirit

  • thank you for your kind words. They are very much appreciated. Sending you healing love and light

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm