My husband has just had surgery for a Glioblastoma

Hi RM15, I’m so sorry to hear what you’re both going through - waiting is maybe the worst part, I’m hoping for positive news about treatment 

I’m coming from your husband’s perspective here, as I was diagnosed with a glioblastoma in 2022 (later reclassified as astrocytoma grade 4). But I do wonder what it’s like for my family - are they only being strong for me? What do they say to each other? And would they ever be really honest with me about their fears?

So I’m interested to hear what you’ve been feeling. Just don’t neglect yourself - I sometimes wonder if it’s harder for the family. And don’t ask too much of yourself - you’re communicating and you’re there for him - you don’t have to be a saint. Everyone’s different of course, but I’m closest to the friends who don’t coddle me and are still able to laugh about life and how shitty it can be

sorry, long rant! But I’m sending love and hope, and stay in touch if you’d like to talk more,

Alex xx

ps, ‘coping’ has different meanings for me now - the bar is very low. Go easy on yourself x

Hi, Alex.  Thanks for your reply.  I don't really know the difference between Glioblastoma and Astrocytoma, but I hope you are getting the best treatment possible and really appreciate your "talking" to me. 

Yes, waiting is horrible, isn't it?  We still feel quite in the dark about what is going to happen.  Surgery was something concrete that happened swiftly and efficiently, and they were pretty good at explaining everything as it happened.  But now we feel a bit cast adrift, waiting for someone to explain the next steps. 

Yes, it's hard to know what your nearest and dearest are really feeling and thinking.  Even if communication is good between us, there may always be an element of not wanting to dump our shitty feelings on the other(s) so as not to make them feel worse.  It's complicated, isn't it?  I know I don't have to be a saint but want to be good enough!

We went to see a stand-up comedian at a local theatre the other day.  It was good to laugh and not think about "it" for a couple of hours.  More comedy needed, I think.

Good advice about the word "coping".  What does it actually mean in this situation?  Maybe the bar is lower than it used to be.

Thanks for your best wishes.  Same to you.

Rebecca xx

Hi Rebecca, it’s good to hear back from you ️ I definitely agree about the comedy - for me, it makes everything bearable and always has. A close friend gave me a card when I came out of my craniotomy, with the words ‘I’m Glad You’re Not Dead’, and I liked it so much I kept it. Blunt but also sweet. 

I guess everyone struggles to know how to act or what to think in these situations. After living day to day for two years I’ve kind of got used to it - I’ve focussed on the things and people I love and stopped grumbling so much about the things I don’t. You and your husband will find your own way, it’s just early days and still unknown.

Till you know more, more comedy, yes! I binged on all my favourite comedy series’ during chemo/radio - do you have any favourites?

Alex(ia) xx

HI RM15

a warm welcome to the group. Sorry to hear about all that's been going on. I can empathise entirely with the journey you have been flung on and with how you are feeling. I was in your position in Sept 2020 when my late husband was diagnosed with a GBM.

These early days are so emotionally overwhelming for all involved but trust me when I say you are coping so much better than you give yourself credit for. 

I can only speak from my experience of supporting G through his 3 year journey. He had surgery in Sept 2020 to debulk the tumour then had 6 weeks of oral chemo/radiotherapy from mid-October. He was 50 when he was diagnosed and a fitness freak (marathon runner). He coped really well with the 6 weeks of treatment. His only side effect was fatigue which kicked in around week 4 and lasted for a month afterwards. Throughout he was up and about and out walking every day. He even insisted on taking himself to some of the treatment sessions which involved a 60 mile round trip by train and on foot.

G certainly kept active. You can read the gist of our tale in my bio but he kept running right up until a couple of months before he passed away in Oct 2023. He set PBs at all his race distances right up to marathon in 2022 and when he could no longer run, he cycled in the garage for hours or walked miles instead. 

At this stage of your journey, I'd suggest that you be led by what your husband wants and feel able to do. Let  him guide you here. Both of you have an enormous amount to process.

I've written a few blogs for the MacMillan community over the past few years and thought I'd share the links to two here with you just now

                                                                                                                     Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

“I’m fine”: how do you really cope as a carer? - Macmillan Online Community

I don't want to overwhelm you here but one thing I would advocate is that in all of this you still take time for yourself to recharge  your batteries, even if its only 10 minutes to walk round the block or to sit with a coffee and a book. I'll not lie, this is a gruelling emotional rollercoaster ride for everyone involved but you will get through this.

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 might also want to look at Glioblastoma multiforme brain tumour forum | Macmillan Online Community and Cancer carers forum | Macmillan Online Community I personally drew a lot of support from those groups. 

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.

if there is anything I can do to support please message me.

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

Love n hugs

Wee Me xx

Hi RM15

Sorry to hear about your husbands diagnosis, it's truly heartbreaking isn't it. The waiting around can be really difficult, it's the not knowing whats next that is so hard to get your head around.

My son was diagnosed 5 nearly 6 months ago and I can honestly say that I haven't coped well at all. My son seems to be doing better than I am which I find quite shameful. We don't talk about the actual diagnosis, just his treatment. If he wants to talk I will, but if he's happy as he is right now I don't want to be causing him more upset if he's coping ok in his own head. 

I'm always here if you need to chat or scream, any time. 

Deb

Hi,, Akex

Sorry - but glad - to hear you've been dealing with this for two years.  I mean I'm  glad you're not dead yet!!

Favourite comedy shows:  we grew up on Monty Python and Morecombe and Wise, which ages us!  After that, Smack the Pony was one of my favourites (again, that was ages ago). Slightly m ore recently, I don't particularly like Ricky Gervais but Extras and After Life were good, and we enjoyed The Thick of It and W1.  Stand-up comdians:  I like Hannah Gadsby and Kevin Bridges, although they are very different. My husband also likes the milder comedies like the Detectorists and Doc Martin.  I keep thinking of old things!  Taskmaster is an easy laugh, but can't think right now what else contemporary is good.  

What do you recommend?

Hope you're doing ok.  And your family x

Thanks for your reply, Wee Me.  Also, I've just looked at your blogs.  Only briefly - I'll have another look later.  I'm supposed to be working from home!

First meeting post-surgery with the Oncologist tomorrow.  Not sure what to expect and a bit apprehensive.  

People keep asking me how I am and my answer is "I don't know"!

Thanks, Deb

Yes, I don't know how to deal with talking about it or not talking about it.  I guess I take my cue from him.

Personally, I find myself talking to anyone who'll listen but when they ask "How are you?", I don't really know how to answer. 

Thanks for the offer of support. I think we are at the very early stages of this thing. 

Hope your son is doing ok.  And you and the family x

Definitely not dead yet, no! 

what good taste you have in comedy! Smack the Pony was an absolute classic, I’ve actually been thinking of revisiting it. I haven’t seen any stand-up recently but I’m curious now, will take a look

US comedy has some gems too - I’ve rewatched 30 Rock many times and it never fails to cheer me up. And if you haven’t seen The Good Place, it’s definitely worth a try. The theme of death is pervasive, but it goes through that to a place of silliness and joy - I found it really helpful and uplifting.

sending all my hope and best wishes to you both for your appointment today xxx

Hi all, my husband was diagnosed with GBM4 in April 2023. Had the usual debulking , 6 weeks radio and chemo, then 11 months of chemo that he physically coped very well with. At the moment he is just having 3 monthly MRI’s. It has been an absolute rollercoaster up to now as he is permanently depressed and says he has no purpose in life. We have 3 grown up children who are as supportive as they can be while living busy lives. I have always been a glass half full person, but I am struggling so much at the moment. He can be so nasty and says he can find no joy in anything. I feel as though I’m living in a permanent state of anxiety, my blood pressure is sky high, I’m smiling on the outside but crumbling inside. I went out to lunch with friends yesterday, my daughter was here with him, when I got home he was so angry, we had a blazing row and he stormed out for an hour, we didn’t know where he’d gone.when he came back he locked himself in the bedroom. I feel horrrendous, I shouldn’t have screamed at him, but I have to have some semblance of life myself. He can be so nasty with the kids too, it’s heartbreaking.It’s as if all the good bits of him have been stolen away and we’re left with this spiteful, mean , angry shell. I feel awful for saying that but it’s true. I feel as though I’m drowning, and I’m so disappointed with myself for not coping. Sorry for the rant