Malignant brain tumour

[fern89]

Hello this is my first post & is about my husband. He was diagnosed with a malignant brain tumour in February. He has had partial radiotherapy treatment but was told it wasn't working so it stopped. He hasn't been back to see the Oncologist as she has said there is no further treatment which will help. He suffers from memory loss (Short term wirse than long term) speech problems, mood swings, inability to read or use numbers. These symptoms come & go. We are trying to make most of our time & enjoy the good days. I try to remain positive but find it so hard at times. Can anyone give me any help in coping with this? I seem to make him angry at times as he can only cope with simple answers or questions. Thank you for taking the time to read this.

[Paula19702122]

I am a miracle. I was saved by MPRI. Look it up on the internet. Midwest protonbeam radiation institute. It also saved my dads sister and she had / had a glastoma blioma. Extended both our lives. Wish you the best.

[Janny1306]

Sorry not to reply sooner but only just seen your post.. i lost my husband of 40 years to easophageal cancer with brain mets. the few months after it spread to his brain his memory speech and reading were not affected but his mobility and moods were very variable he fell down a lot and said some horrible things at times he was always sorry especially for being so dependant on me as the main carer . He didn't want people fussing and sympathising which is fine but meant i felt very alone sometimes .I hope you have plenty of help and support from friends and family .Take care take each day as it comes and make the most of the good days .Xxx Jan

[fern89 in reply to Janny1306]

Many thanks for your reply. Sadly my husband passed away on 12th April. He had battled so hard for 14 months against his brain tumour. He was so brave but I felt I had lost him several months ago as his personality had changed so much. He could say some awful things too & I had to keep telling myself this wasn't him it was the tumour. Over the 14 months we did try to have some quality time & visit as many places on his bucket list when he was able. Towards the end though his mobility became his biggest problem along with his speech. We were able to prepare for his funeral and he did not want everyone to be sad. He arranged for the music he wanted and had even asked his brother in law to write his obituary. This may sound morbid but I know the service was as he wanted it & although there were teatearsere were also some lovely stories. We held a collection in his memory with proceeds to go to The Brain Tumour Charity. Any research into this most awful disease is needed.

Celia Xx

[Hidden in reply to fern89]

❤️❤️❤️❤️

[Janny1306]

Dear Celia, it feels so wrong to click like I am so sorry for your loss I had a feeling that my reply was too late. I,m sure you have lots of wonderful memories of yr time together and I envy you being able to make arrangements together . My husband was a fighter too ..he endured 10 rounds of chemo without complaint and seemed to be doing so well. but after the cancer spread to his brain he passed away 4 months later,14 months after his original diagnosis . I hope we gave him the send off he would have wanted. We also asked for donations to the Brain Tumour charity. I wish you all the best for the future, it's so hard at first but it does get better😘😘 Jan

[Hidden]

Mine was the same my mood much better at last,with anti depressants and for me the coil(just for mood,don't think your hubby needs that)I still cry much less I am on max dose setraline 3x epilepsy meds and chill pills(a strong anti-hystamine that if you get mega stressed chills you and at least relaxes you they are perscription only non addictive and help.Big time..❤️❤️

[Janny1306]

Hope you're doing ok and have lots of help and support 💜

[fern89]

Dear Jan

Thanks for your message. I have good & bad days. Am trying to keep busy but it is so hard. I thought I was prepared for losing my husband but when the time came I felt so lost.

After 14 months of being there for him it is hard to adjust.

Family and friends are a great support to me.

How are you doing? I hope you have had help and support too.

Best wishes,

Celia ❤

[Janny1306]

Thanks for your kind thoughts Celia and yes I did and still do have good friends and family to support me.It would have been our 42nd wedding anniversary yesterday so was a bit sad but life has to go on . I still have all Phil's clothes and things but am planning on sending them all of to the charity shop as soon as I get them packed up it will be 3 years at Christmas since I lost him and i feel ready. I also have a new companion but no plans to make it anything more..some days I feel guilty but he makes me laugh (not had much to laugh about for a while). All I can say is take each day as it comes I still cry some nights and when something reminds me of him ..my daughter is getting married next May and we both cried because he won't​be there to walk her down the aisle . It doesn't really help to dwell on what we can't have but rather be thankful for what we shared . Sending you big hugs and best wishes, Jan xxx

[yegiap]

To Jan and Celia, first of all, I'm so very sorry for you both to lose your love. I hope you both don't take this in the wrong matter, but it gives me a bit more hope hearing you both moving forward since your loss - in whatever way you can that's getting you through your day. My dad was diagnosed with a glioblastoma in march of 2017, and he's in treatment now, but don't expect too much more time with him. My parents have been married for almost 34 years - a dedicated and much invested marriage. I worry for my mom sometimes when my dad will no longer be there with her. Being close with my parents, all I feel like I can do is go through these days with them, as best as we're trying..we're staying strong. Hope you both are too. Thank you both for sharing your story....paige ❤️

[fern89 in reply to yegiap]

Thank you for your message Paige. My heart goes out to you & your mum.

We had only been together for 5 years & married last year (it's our wedding anniversary tomorrow) so I can't begin to think how your mum must be feeling after 34 years together.

Make the most of the time you have with your dad. He will know you are there for him. Remember you both need to look after yourselves too.

Sending you love and hugs.

Celia

[yegiap in reply to fern89]

Thank you Celia ❤️

[Janny1306]

Dear Paige, thanksfor the kind thoughts and words. Your mum is lucky to have a caring, thoughtful daughter I,m glad you are there for each other.Some days are harder than others,we can only do our best! Stay strong,take each day as it comes and make the most of the time you have. Sending love and hugs. Jan xxx 💜

[Bobzzii60]

Hi fern I have just joined the community and just saying hello. I have fought GBM for over 4 years hugs to you xxxx