Welcome to the Cancer Chat community Aelv although I'm really sorry about your fiance's diagnosis. I can't begin to imagine how tough this has been for the both of you but I'm really glad you have good support networks in place to help you through.

If you use the 'search forum' option in the blue bar above you should be able to find other discussions where you can connect with others who are in a similar situation to your own but hopefully some of our glioblastoma members will reply to you here soon as well.

If you ever need to speak with one of our cancer nurses they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m but in the meantime I want you to know we're here for you and will support you every step of the way.

Kind regards,

Steph, Cancer Chat Moderator

I too have glioblastoma 4. I was diagnosed in July  2019 and operated on 2 weeks later. Consultants cannot give a definitive time scale, mine is the same as all others incurable. So here I am over 18 months later still going, occasional loss of memory but physically ok. I was 57 when I had my seizure,  was my  first notification something was wrong prior to that nothing. My wife's family have been my support bubble. I gave all of them names like Blackadder for ideas ( sister in law) to my mother in law as Bomber Harris who would go through concrete for me. I have a bucket list but with this virus it's more like a thimble list. 

Fingers crossed for you all and look forward not back 

Hi there!

First of all, I'm so sorry to hear about your partner. And I cant even imagine how hard it is to deal with all this with kids as well. Sending much love to your whole family.

The covid stuff really sucks, especially with this new surge of cases and new mutation paired with how many people are acting as if the pandemic is already over just because they want it to be... I got a cracking head cold just before Christmas despite hardly leaving the house and it made me very emotional because even though it wasnt covid (I got tested), it drove home just how vulnerable my partner is and how something as innocent as giving him a kiss could lead to him being on a ventilator no matter how careful we are. Hopefully our partners will both be vaccinated in the next couple of months and we can organise some trips for later in the year. Michael is really keen for a big family trip to Finland which is where I'm from originally, and while his oncologist says he can't recommend it while he's on chemo, he's willing to work with us to help make it happen when it's safer to travel.

How is your partner symptoms-wise? For the longest time Mike was doing incredibly well but I've definitely started seeing subtle changes in the past month or two. Apart from sleepiness and eating less, he often struggles with very simple instructions and gets really frustrated when he feels his brain isn't working as normal He also deals with chronic pain because he fractured his back during a seizure which restricts how long he can stay on his feet and stay active. It's not huge stuff in the greater scheme of things and luckily he's been seizure-free since his keppra was adjusted and he started on steroids to control swelling. It would be interesting to hear how other people experience symptoms and deal with them.

Wishing you much love and good memories in 2021 xx

Amelia

Hi there,

First off, I'm so sorry to hear you too have been affected by this horrible disease,  but it's lovely to hear you're finding so much love and support with your wife's family and making plans for the future (as hard as it can be thanks to covid ). I really liked what you said at the end there - we have to look forward, not back! I've done a great deal of grieving in the nine months since my partner was diagnosed for the life we most likely won't be able to have - a house in the suburbs, kids, a dog etc etc. Just normal stuff for a young couple in their 20s! But there's still life left to live and memories to be made, and we've been pretty good at making those, especially last summer when we were all shielding together at my in-laws' house - his parents, siblings and their partners, all nine of us!

How are you dealing with symptoms? I'm always curious about other people's journeys with this disease.

Sending much love xx

Amelia 

Hi.  I am going good thank you at this moment. I do get frustrated sometimes as i have what i call predictive thought (it's like predictive text on your phone) you know the word but the one wrong comes out. Ignore the timescale as consultants think in terms of 1,2,5 and 10 years so we are all in a scattered category. I dont look at the years i have got, I just take one day at a time, we are not a number we are all individuals. 

 Life is crap but it will get better, live each day as it is your last is my philosophy. I have plans in my head, holidays, family gatherings and I will do them come hell or high water.  I have different projects and am teaching the family to swear in sign language (no I am not deaf honest), I have to express myself without people thinking I have tourette's, and the family are using it at work to people who pee them off. Lol. If you want help in sign language swearing let me know. 

Stay positive and remember you cannot spell evil without spelling live. So although GBM4 is evil it also makes us live for who knows how long to *** it off.

Take care

John 

Hi My partner was diagnosed with glioblastoma in january this year .Its the hardest thing to cope with.The confusion is hardest of all.