New diagnosis…. Husband has brain cancer stage 4

Hi S Moss, I'm only a few weeks ahead of you in the same process - 50 with a family and suddenly diagnosed out the blue 5 weeks ago. In my limited experience the radio and chemo is so far not too bad for me, but everyone is different. But that also means each person is not necessarily the same as what Dr Google may suggest. These first weeks have been a roller coaster of emotions as you know but  as the consultant suggested to us at our first pre treatment meeting 'you do gain some control' in the process. Wishing you luck and strength. This seems like a good place for support and advice. Reach out if I can help in any way. (though I'm new here too!)

Aw thank you so much for replying to us, just read your message out to my Husband and it made him smile  Hope your treatment is going as well as can be expected. We have our first appointment on Thursday. Have you managed to keep working through your treatment? My husband is a graphic designer and is concerned about his work.

thanks

Hi S Moss

a warm welcome to the group. I am so sorry to hear about all that you and your husband are going through.

I can relate only too well to this. My husband, then 50, was diagnosed with a stage 4 brain tumour (glioblastoma) in Sept 2020. Nothing prepares you to hear that news- absolutely nothing.

The first few weeks of this journey are scary and overwhelming for you both. Please try to avoid Dr Google (he's really scary!) and focus on the facts that you have been given. Everyone in this situation is unique. Every tumour impacts people differently too. My husband's tumour was/is in Broca'a area of the brain and has impacted speech/language and understanding. Physically he's in incredible shape. He's a fitness freak and a marathon runner and is all set to run the London marathon next month.Mentally, that's more of a worry as he is not dissimilar to someone with early-stage dementia.

For now, my advice for what it is worth, is to take this one step at a time. Ahead of your appointment next week, write down all your questions however trivial they may seem and every concern and take those notes with you. It's very easy to become overwhelmed during those early appointments. There's no such thing as a silly question. Those notes will help to keep you on track, hopefully.

This group is a really safe and supportive space. Personally, I've drawn a lot of support from it and the (+) Carers only forum - Macmillan Online Community. There's always someone around to listen and support who gets it, someone who understands, someone to hold your hand and to offer that virtual hug when its needed too. If there's anything I can support with, just ask. Message me if you prefer a more private approach and I'll do what I can here. I'm still riding this emotional rollercoaster journey too so I get it.

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.

I don't want to give you false hope but as I said everyone is different here. We were told 16-24 months initially pre-surgery then that dropped to 12-15months post -surgery. Those 15 months were up in Nov 2021 and we're still here. These timelines are averages and guidelines. They are not set in stone. 

One other piece of advice I would offer is to look after yourself. I appreciate that right now that probably sounds selfish but it's not. You need time to get your head round this, and time to recharge your batteries so take that "me time" even if it's 15 mins with a book and a cup of coffee. 

For now though I'm sending you a huge virtual hug. Breathe. You're coping so much better than you give yourself credit for (you'll just need to trust me on that one,) Stay strong,

love n hugs

Wee Me xx

Oh me, that last paragraph made me …. Yes I’m probably stronger than I think, definitely don’t feel it. Thank you so much for getting in touch it’s very much appreciated. Will keep in contact, I’m going to try and sleep, something I’m normally very good at but I’m the last 2 weeks it’s impossible!!!! Xxx

Thank you so much for your reply, much appreciated.

Hi s moss I got diagnosed with a glioblastomas grade 4 in 20019 and got told I had 12-18 months.  I was devastated with the news and it is really scary. I think we all go through the same emotions when you get told you have cancer.  I had the op then I had 6 weeks of radiotherapy an d chemo. You have a mask made to fit your face which you wear while having radiotherapy. I had no problems going through this stage of treatment. Then I have mri every 3 months to keep a eye on the tumour. I do get anxious every 3 months waiting for the MRI results hoping the tumour has not been active. But when you get the no change result it’s a sigh of relief you and your family can get on with your lifes for another 3 months until the next mri. I have got a good support team from my cancer hospital. They are so friendly and always there giving you information and explain everything to you. Now this is just normal for me now this is my life. I must say 3 years on your life still goes on you make family memories and as a family you are stronger. The diagnosis hasn’t changed but you deal with it  

I went for last 3 month scan and went for the results and get told the news you dread sorry it’s not good news the tumour is active again and you have to go in for another operation. So I have had my op recovering from that and I will be starting my 3 months scans again this is why the scans are every 3 months so they can get the active tumour early and it is only small.  I hope this has helped a little bit I know we all deal with things differently my oncologist told me he has got patients under him 5 or more years. I am still here 3 years on stay strong. I spend as much time as I can with my family and make loads of memories with my husband and I enjoy my life what ever time I have no one knows how long

Thanks for your message TriciaJ That's the positive outlook and story I'm hoping for (having originally only been given months + months). 

When I was originally randomly admitted to hospital in Southampton they thought it was a stroke. Had it been and that night fatal, I wouldn't have seen all the kids again (as one was on holiday post graduation), so I'm already living bonus days since then. 

My feeling is that everything to date Ive been told is based on best estimates based on general stats. I get my first set of scans / MRI mid October / Nov after the first round of treatment (chemo and radio therapy). At that point it's purely about me, my brain, my tumour and how I react. So thats a clear point to strangely look forward to. And in the mean time, keep putting more life in my days.

Thank you your message, so kind of you to reply. I’m glad you are doing well, and hope this continues. I am up and eating, that’s a big step for me today…. U would think it was me that was I’ll, noty hubby. That gives me some hope re our future together, unfortunately I’m the negative one in our relationship and Scott is always positive! Hence why I can’t stop crying….. I need to just get a gr and get on with it…. Easier said than done. Unfortunately I lost my mum recently to cancer and I miss her more than ever now  hope you have a lovely day. We are from Aberdeen and it’s pouring of rain ️ 

Oh I didn't mean to make you cry. I'm sorry S Moss. 

A few months ago, MacMIllan asked me to write a couple of community blog posts for the site. I've added the links below. 

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

There's no hard and fast rules on how to cope here but these are my thoughts and seem to have helped a few folk from feedback I've had.

love n hugs

Wee Me xx

Hi S moss

i am about to finish my first round of radio and chemo today. I’m almost the same age as your husband and I managed to dodge most of the side effects they tell you about so don’t take it as gospel that you will get them. I’m proof that not everyone does. 
One thing I have learnt from this so far is that everyone is different and as you can see from comments on here, there certainly is hope. 
apart from tiredness I feel fine still and I’m still myself so far. 
We too were a bit all over the place for the first week or two but my wife and children have been great. We have found that talking about it lots and not shying away from it has helped us. 
feel free to message if you think it would help, I’m about 8 weeks ahead of you guys. 
wishing you and your husband the very best.