Wife’s GBM diagnosis

Hi

So sorry to hear your story. One that is unfortunately all too familiar here

Please don't apologise for expressing your feelings . This is the right space to rant/rave/vent or whatever you need to do.  Everyone here understands and you don't need to explain

Its good to be positive and perhaps more so with children but unfortunately you also need to be realistic which is very tough. It is a very hard situation to accept and maybe we never really do 

I lost my husband to this dreadful illness almost two years ago.  I try to remember the happy memories and the good times we had together but my heart is broken . You are stronger than you believe. Please take care of yourself. Even if that is just sitting with a cup of coffee or a quick walk around the block. You need to mind yourself so that you can take care of your wife and children.

I'm sorry if I'm not giving you cause for hope . Live everyday and make memories

HI HW66

a warm welcome to the group. So sorry to hear about your wife. Nothing prepares you for hearing a diagnosis like this.

I'm supporting my husband, now 53, through his GBM4 journey. He was first diagnosed in Sept 2020, had an awake craniotomy and then 6 weeks of oral chemo/radiotherapy. He declined any further treatment at that point. Initially we were told he had 12-15 months based. He's still here. His initial tumour was sited in Broca's area of the brain so his symptoms up til now have largely been cognitive. 

He's a fitness freak and a marathon and even now, as we are approaching the final stage of this journey, he's still out running. A positive attitude certainly helps. 

All these emotions that you are going through are perfectly  normal. You've had a lot to process so don't be too hard on yourself here. As Life Detour says, you are stronger than you think you are. You're also coping with this better than you think you are.  

I'll not lie, its a tough gig but this is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and someone to  offer that virtual hug when its needed. You're not alone.

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.

As Life Detour has said, please take time to recharge your own batteries here, even if it is only a few quiet minutes with a coffee. Taking me time isn't selfish, its essential to keep your batteries charged. 

Take this one step at a time. Focus on the here and now and not on the what if's. 

For now, I'm sending you a huge virtual hug and lots of positive energy. Stay strong. Remember to breathe

love n hugs

Wee Me xx

Hi HW66,

I'm sorry to hear what you are going through. It sounds like you are in a similar place to where I was three years ago (my wife was diagnosed in Dec 2019).

I totally understand where you are coming from.  I remember the first few months post operation and chemo and radio being a total whirl where we were all just running to stand still.  I remember about half way through February just starting to feel a little bit more normal - my guess is that that is where you are standing now.  My wife was then given a number of cycles of chemo - but they were relatively unintrusive - we just needed a conversation with the hospital once a month to collect tablets.

In regard to what to tell your children... I read the Macmillan leaflet on talking to your kids about cancer.  It essentially says you should be honest with them.  What I tried to do was to tell them (aged 14 and 17 at the time) what I knew - but not to go beyond that.  So I didn't speculate about life expectancy or anything like that.  But I did tell them that the hospital had told us it was incurable.  They were both very upset and my wife was furious with me... she was always convinced that she would get better and I was needlessly creating upset.  But it was a red line for me that I needed to be straight with them about what the hospital was saying - otherwise they would never trust us again.  

https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-to-children-and-teenagers

There are people on here whose loved ones have lived for quite a few years following a GBM4 diagnosis.  You are doing all the right things.  A resection followed by radio and chemo gives the best life expectancy.  In our case, it bought Fi two years of really good health before the cancer recurred in March 2022.  She died in December 2022.

Following Fi's initial radio and chemo, life returned to almost normal (ignoring the pandemic!) - we got on with our lives, went on holidays, eventually stopped living day to day, went week to week, then month to month.  Life got back to its rhythm and Fi went back to doing all the things she was used to.  I think you are just starting that process of getting back to normal now.  I takes a long time and you will need to be patient with yourself.

A positive mental attitude will help enormously.  You have already been through a huge amount as a family.  You will need to be positive to get some normality back.  You could try to get some fun stuff in the calendar for this year that you can look forward to together.  (I remember Fi being very sensitive to me booking up holidays immediately post-radio - she felt like I was trying to "make memories" - but I was just trying to make sure we had some fun.)

It probably doesn't help your wife for you to be raw and unfiltered with her - though clearly she needs to know how you are feeling.  I hope you have some good friends around who you can be honest with about how you are feeling.  I have a few good friends who know when to suggest a pub outing or a curry to give me the chance to talk about all that is going on.  I don't think I would have gotten through without that.  If you don't have those relationships, try to cultivate them.  People really want to help.

As others have said... look after yourself... one day at a time for now... I hope that life will find a new rhythm for you.

Big hug...

Pete

Hi Pete or Stan, this is such a helpful reply, thank you! We have a wide span of ages of children, and have chosen the right message to suit each, but everything we've said is the truth. The link you gave is really helpful, and I feel the door is open for ongoing conversations.

I'm so sorry to hear your story, but happy at least that you had two really good years. I'm hoping to get as many of those as possible. Someone here posted just now that their partner was a 10 year survivor which really cheered. M's GBM is methylated which is helpful.

You are so right about the balance of getting fun stuff in the calendar with 'normality'. Did you have issues with flying, by the way? It was a flight that finally tipped things for M - the de-pressure caused the symptoms to exacerbate, so we are very sensitive about that. atm looking at breaks by train!

Thanks again

H

Hey H,

Sounds like you're doing a great job with the kids.  I really feel with this stuff that there is no "right" answer - we make our decisions as best we can with the information we have available.

Flying wasn't really an issue for us since the pandemic appeared and, after that, to be honest neither of us really had the confidence to leave the country - I always wanted to be sure that I could get her home if I needed to.  We always mostly holidayed in the UK anyway - so we just travelled to Cornwall, Wales and the Lake District - good enough for anyone!

I did collect this leaflet at one point when I was thinking about going abroad.  It would probably be worth looking into travel insurance before you book any holidays abroad.

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/travel/buying-travel-insurance

Thanks,

Pete

on the travel insurance front, we managed to get cover for my husband through All Clear for his two trips to France. He didn't appear to have any issues with cabin pressure etc but the flights were short.

love n hugs

Wee Me xx