Husband Newly Diagnosed!

I was diagnosed in Dec '21. Still here !

First thing would be talk to Macmillan financial advisers. They can apply for all the benefits you are entitled to on your behalf. Then address the paperwork like Lasting Power of Attorney (s), wills etc. I would be happy to talk you hrough my story -I'm in the SE.

The treatment can be rough, but not as bad as Hollywood would have believe.

Hi 

is this post surgery? Everyone is different, but I had no problems with chemotherapy radiotherapy . Had my 6 weeks and now on round 5 of oral chemo. I have  worked all along , but yes, being ill is expensive! As I am not allowed to drive and live in a rural place, I spend several hundred a month on taxis. I hope you can sort out your finances. I am fit and well nearly a year post diagnosis now, its not all bad news! 

HI Jacjac

a warm welcome to the group. So sorry to hear about R's diagnosis. Life is too cruel.

I supported my late husband through the 3 years of his GBM journey. He too had the 6 weeks of chemo/radiotherapy and to be fair, he coped really well with it. The first week of the chemo tablets, the CNS gave him some strong anti-sickness pills to take even if he didn't feel sick and that seemed to help his body adjust to them. His only side effect really was fatigue and that kicked in around week 4 and lasted for about a month after the treatment finished.

Being a mess and scared is allowed. I was exactly the same back in late 2020 and that was when I found this community. Personally I drew so much support from this group and a couple of others - Glioblastoma multiforme brain tumour forum | Macmillan Online Community and Cancer carers forum | Macmillan Online Community 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.

MacMillan offer some guidance with regards to financial worries. Here's some links 

Money advice | Macmillan Cancer Support

Help with the cost of living and cancer | Macmillan Cancer Support

Money and work | Macmillan Cancer Support

Macmillan Cancer Benefits Calculator | Macmillan Cancer Support

You can read the gist of my story in my bio but I'll also share a couple of community blogs that I wrote for MacMillan as they may resonate with you

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

For now, please take this journey one step at a time. Avoid Dr Google as he's a scary dude and focus on the facts as you have been told them. Please also take care of yourself  at this time. It takes time to process all that is going on so all the emotions you are feeling are natural. It's the strongest, most resilient among us who show our emotions. I cried oceans of tears when G was first diagnosed.

I've thrown a lot of information at you so I hope its not too overwhelming, If I can help with anything, just ask.

For now though I am sending you a huge virtual hug and lots of love and strength.

love n hugs

Wee Me xx

Thanks for the reply, they can’t remove the tumour due to location in the brain, we start next week the treatment! 
Got a meeting about finances next week, and we go from there! 

Thank you so much! I will read up everything xx

Hi Jacjac,

After my husband was newly diagnosed and before the op thing's were very stressful,we were in shock.But 20mnths down the line apart from the monthly blood tests and 3mnth MRI scans everything is quite settled.

My husband does everything he used to apart from drive.He works full-time from home and takes train or stays over place's if he needs to.He is still on chemo but doesn't have any ill effects, he plays sport 3 times a week and coaches He walks an hour to his favourite country pub and back and they've stocked his favourite low alcohol beer for him.

I realise that things are likely to change in the future, and I certainly do have moments were I worry about mortgage, finance's but there is only so much you can control in life so I used to plan my life almost week by week when he was first diagnosed but now it's more like a few months ahead.

I haven't really had much communication with support groups etc and I'm only on this forum at the moment I feel a bit of a fraud because he's doing so well compared to many.

I too thought I would be caring for my husband particularly after the op but he was fine within a few weeks - he used to walk up the local shop with this big bandages and staples in his head,the locals were pretty shocked.

Good luck with everything, take things a week at a time.

Hi Jacjac,

No words of wisdom from me here but I feel and understand your pain. The replies you have received though are so useful and this forum feels a safe place for guidance. 

Hopefully Macmillan will help with the form filling on finances and stuff to help you, I've seen they say this is something they can do. Take a little pressure away.

For me, first time posting but I'm about to embark on the same, just found out past 10 days I have a dreaded BT, chemo/radio starts next week for 6 weeks.

We've got this girl. x

Thank you, I’m slowly coming to grips with it all just the initial shock of it all I guess! 
You take Care! X

My husbands tumour they can’t operate on/remove it as it’s right next to healthy tissues and on the left side which would affect his speech and eyes, he’s fine in himself he’s just a bit tired sometimes and we keep all things crossed for the treatment to work! 
Thank you for your reply, take care! X