My husband's journey to date

Good evening. I am on a different journey myself . I'm newly diagnosed and post surgery with aggressive tumour. Waiting for treatment .

I just wanted to say that I am really sorry that you and your husband are in your particular situation. It is heartbreaking and distressing . 
I send you love from me in Derbyshire and think you are brave to tell your story 

Hi

a warm welcome to the online community and thank you for sharing your story. You've definitely not gone on too much. It's good to open up and share. I was also glad to hear that MacMillan are already on board to help you sort through things.

My personal experience lies in supporting my late husband through the three years of his stage 4 brain tumour journey so I can empathise with how uncertain things look and how scary it can feel too. I'm not big on giving advice as such but I will share the link to a community blog that I wrote during G's journey. “I’m fine”: how do you really cope as a carer? - Macmillan Online Community I hope it helps.

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.

For now though I'm sending you a huge virtual hug and lots of positive energy.

love n hugs

Wee Me xx

My husband was diagnosed with a stage 4 Glioblastoma in August.  This came completely out of the blue as he had been in our local hospital being treated for something different. We subsequently received an appointment at a large city hospital over 60 miles away to see a neurosurgeon, not knowing why.  When we were told it was a complete shock and the neurosurgeon said he wanted to arrange a biopsy.  

I am now feeling totally let down because at no point were we told that a biopsy is done instead of debulking surgery.  We kept asking about surgery to remove the tumour and were just told wait and see what the result is.  Next thing we are told is that his care has been passed to the oncology team at another hospital in the city and there will be no surgery.  He has just completed 15 days of radiotherapy and chemotherapy (temzolomide) rather than the normal 30 days because of the distance involved.  The oncologist said they have found this is just as effective, but is that true or is it because of his age?  He has to go back to see the oncologist at the end of this month, although I am not exactly sure why as he hasn't had a scan recently so they won't be able to tell if there is any shrinkage.

I appreciate that some tumours are inoperable, but we should have been told that at the outset.  My husband even asked the surgeon on the day he had the biopsy about an operation to remove it and he still wasn't told that there was no intention of doing further surgery.  

I am wondering if this is partly because of his age (72) and they just thought it wouldn't be worth it.

I am thinking that we should have got a second opinion, but the nurse kept telling us how lucky we were to be seeing the one we did as he is phenomenal.  

I have been an absolute emotional wreck for the past few months and am finding it all so hard to deal with, feel that we have been let down.  I did ask about any trials, but that didn't get me anywhere.

Just feel so helpless.

Hi Bev

so sorry to hear about all that has been going on with your husband. Life's too cruel for words at times.

If you feel that a second opinion would help you and your husband cope with this then I'd encourage you to ask for this. However I would caveat that by saying in my experience, G's case was presented at a Multi-Disciplinary Team (MDT) meeting and the collected medical professionals had input to the plan with him at that time. we were the opposite story- he was told he would get a biopsy and was then phoned and told that they would go straight to debulking.

Everyone is unique here so there is no one size fits all plan. The medical team looking after your husband really are the ones best placed to advise on the specifics of his case.

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.

For now though I'm sending you a huge virtual hug and lots of positive energy.

love n hugs

Wee Me xx

Hi Wee Me,

Thank you for posting. 

My husband's case was also presented at an MDT meeting and the consultant oncologist told us that there was input from various consultants as to the decision not to operate.  They said it was too risky as it could impact severely on his mobility and memory.  However, we had been hoping that they would try and remove at least some of the tumour, as most people seem to have this done and it probably increases the chances of prolonging life.   

He is now three weeks post radiotherapy and chemotherapy and has been getting side effects, which he didn't have during the actual therapies.  His vision has been affected, as has his memory and he has suffered hair loss at the site of the radiation.  I am just hoping that these things are temporary and will improve with time.

I am finding it very difficult coping with Christmas looming and, wondering if this will be our last one together.  Have had a bad couple of days with endless crying, but trying not to show it.  It's all such a strain.

I try to hold onto the stories of people who have defied the odds and gone on to survive for at least a few more years, but sometimes it is so difficult to remain positive.  Is 72 too old for this kind of prognosis?  He is being so very brave and trying to carry on as normal, which is why I try not to show him that I am falling apart.

We have an appointment with the consultant oncologist on 29 December, but I am not sure why when he hasn't yet had a scan to show if there has been any changes.  

Thanks for listening and I hope you are holding up okay at this very emotive time of year.

Bev xx

HI Bev

lovely to hear from you.

Treatment symptoms post-treatment are normal as the radiotherapy keeps working on the body for about a month after the last treatment. G had some hair loss around the treatment area but it grew back quickly. His main symptom from the treatment was fatigue and it passed.

You are both processing a lot so all the emotions are allowed and are perfectly normal. I cried oceans of tears in the first few months after G's diagnosis. It's the strongest and most resilient among us who show their emotions. Its healthy to show them as it means you are processing them and not bottling them up.

As for Christmas... MacMIllan shared a blog I had written in 2022 and updated recently a week or so ago. (+) Staying in the present at Christmas: how I coped with each 'last time' - Macmillan Online Community  Have a read and hopefully it will offer some support.

Please take this journey one step at a time. Focus on the facts not the what ifs. I hope the appointment on 29th goes smoothly.

sending you love and light and sparkly festive hugs.

Wee Me xx

Thank you Wee Me for your very helpful post.

I am just having a bad couple of days and crying at the drop of a hat.

I have read your 2022 blog and found it very moving and absolutely 100% spot on.  

I just can't envisage being alone after our lives being so entwined for the past 53 years.  The thought of not having somebody to talk to over meals  when we discuss all sorts of things - the news, the past, TV programmes etc, it just fills me with dread.  I absolutely hate being on my own.  

I have been like this now for four months, basically since he was diagnosed.  I have found the name for my condition "anticipatory grief".  My OH says he had always hoped that when his time came it would be quick and painless like a heart attack, not a long drawn out death.

Bev xx