Reaching out

HI Eleanor, welcome to the forum and I'm so sorry to hear about your husband. I cared for my wife who had a GBM. Below I've given you some general Macmillan information but to answer your question this wasn't something we experienced but I know is sadly quite common so others may want to share their experience. From what I've read from others it can be very similar to the way that dementia sufferers can become aggressive as their disease progresses.

Sending hugs,

Chris

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There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

Have you or your husband been offered any counselling at all? Either way it’s always good to talk so please remember you can 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.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.

Thank you for responding.  Before diagnosis, I had considered the possibility of dementia but not a brain tumour.  

Love and hugs returned, 

E

Hey Eleanor 

We absolutely had this experience. My dad had quite a personality shift and was particularly harsh on my mum. Even though we knew it was the disease and not really him, it’s very very tough to deal with at the time. 

The steroids had a lot to answer for with my dad’s mood swings. As soon as we were able to lower the dose we did and it got better. 

I have seen lots of other similar stories so you are absolutely not alone.. I wish there was more I could say to help. It really is horrible. 

Sending love xx 

Thanks, GF92 for taking time to respond.  Sorry to hear your family have experienced this too.   It’s heartbreaking and I certainly feel for your mum.  

There has definitely been an improvement post diagnosis as the Dexamethasone reduced and the anti-seizure meds, Levitiracetam were replaced with Brivarcetam.  The Oncologist and nursing team were concerned with my husband’s disengagement and also informed me that they had concerns about my emotional welfare from what they had witnessed at appointments.  They, therefore, swapped the anti-seizure meds and it did help.  

I feel guilty that there were signs before diagnosis that I certainly picked up on but didn’t seek medical attention - the uncharacteristic petty criticism, emotional flatness and disinterest.  I had sudden medical worry last Nov, 4 mths before my husband’s diagnosis.  I decided not to tell him, as I had become accustomed to him showing a lack of interest in me.  He has always been an attentive and caring husband.  I couldn’t work out why he appeared so disenchanted with me.  I initially thought he was depressed, another seemingly common symptom before diagnosis. 

I was interested to know if any other families had picked up on subtle cues before diagnosis too not realising that this terrible illness was behind the personality changes.  My husband eventually had a seizure which led to the diagnosis.  

It’s not until this nightmare comes knocking at your door that you can truly understand, the desperation and hopelessness that comes with it.  It’s nice not to feel so alone.  

Love and hugs, E 

Hi Eleanor,

My husband didn't have any real warning signals. He was really tired over the Christmas holidays but he had been working ridiculous hours, he did have a stumble on Christmas Eve but the pavement was very uneven. We didn't connect them. It was really on New Year's Day when his eyesight altered we became concerned. He was advised to visit our local A & E as they had an on call opthalmology team - that was the day our world fell apart.

It is such a cruel diagnosis.  

Sulubee

Hi Sulubee, thanks for responding.  It seems everyone presents differently.  Sadly, I know exactly what you mean about your world falling apart.  It’s 6 months on for us and it gets no easier to deal with at all.  My husband came to terms with it after just a few weeks and tells me it is what it is and you can’t change it. I’m still broken and burying my head in the sand. 

I remember watching a TV programme years ago about a joiner who meticulously kept nails in his toolbox in different compartments according to size.  His wife noticed one day that they were all mixed up and this was totally out of character for him and a real red flag.  He had a brain tumour.  Not sure why this has stuck in my mind.  

I hope your husband is doing ok. 

Take care and live to you both. 

Hi Eleanor. So sorry to hear about your husbands diagnosis. My husband was diagnosed July 2023. He had been forgetting things, muddling words up and was really not himself. Doctors thought it was stress and he needed more sleep! He went back for a second opinion and they booked him in for a scan. We went to the hospital at 5.00pm for a routine scan and he didn’t come home for a week - straight to A&E then a cancer ward. It was devastating. One of the worst things was leaving him there for the first time and I was handed lots of information on brain tumours and the local bereavement charity for children … we have two boys now aged 11 and 13. Things got a whole lot worse, very quickly and each day he got further away from us and was like an old man with dementia - forgetting our names and who we were. He nearly died and was blue lighted to. Cardiff for emergency surgery. Since then he has had chemo and radiotherapy. He’s very tired and like you have described, can be very dis interested and dis engaged with family life - other times, he can almost be back to normal. He can be very short tempered, particularly with our boys, and I find I am the ever calm peace maker - it can be like walking on egg shells. So far removed from what he was like before. We go to every three month scan with trepidation … our next one is in two weeks … the build up and even the aftermath is so hard. I am sorry you are going through this too. There seems to be so many people that experience different things but I think we can all agree, it’s bloody hard, heartbreaking and just cruel. Sending you a big cwtch and some love too x 

Hi Sunflower73, again I’m sorry that you’re in this situation too.  I don’t know if you’re the same but every day I wake up and think I should feel better but nothing changes to make it better.  I’ve always been a happy, carefree person and tried to find the positives in difficult times but this is quite something else.

I’ve just texted a friend and used the words, cruel, heartbreaking and hard!

I too have become accustomed to treading on eggshells and was doing so some months before diagnosis due to the unexplained changes in behaviour - like you, not something that I’ve experienced before in my marriage.  My husband is only difficult with me though but not all the time.  He’s kind to our 3 children.  He struggles with his memory and word retrieval since the surgery which must be so frustrating for him.  

It’s so hard seeing the person you love in front of you, speaking in the same voice but behaving like someone you no longer recognise.  The brain tumour nurse told me back in April that there will now be 3 people in your relationship; your husband, you and the tumour.  It’s so true.

Good luck with the scans.  Sending a big hug and love to you both and your boys xx  

Thanks Eleanor, 

Unfortunately my husband passed away 16 months after diagnosis. His personality did not change much and he although he had periods of time when he became very confused we were lucky that he was still mostly the man  I married which I am grateful.

Sulubee

Morning Sulubee, I’m am so sorry for your loss.  I didn’t realise.  Sorry.  

It is one small thing for which you can be grateful.  

Thank you for still helping others and offering comfort and support. You’re a special person.  

Sending much love