Sister recently diagnosed with Grade 4 GBM

Hi Snoopygirl70

a warm welcome to the group. Glad you found us. So sorry to hear about your sister's diagnosis. Life's too cruel for words at time.

I can empathise with the journey you are facing as I supported my late husband through the three years of his Glioblastoma journey. G was 50 when he was diagnosed out of the blue in Sept 2020. You can read the gist of our story in my profile. I've also shared a few community blogs over the past few years. These may help a little here-

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

How do you get through these moments? - good question. You will find an inner strength that you didn't know you had and you will get through this. I'll not lie, its a gruelling emotional journey for all involved. I'm not too proud to admit that by the end of G's journey in late Oct 2023 I was exhausted mentally, physically and emotionally. 

Take this journey one step at a time and be led by what your sister wants and can cope with. G's main symptoms throughout were cognitive rather than physical. His initial tumour was in the area of the brain that controls speech, language and understanding. His symptoms were more like dementia than cancer. He quickly lost the ability to read and his short term memory all but disappeared. You need endless patience for this journey.  

Timeframes are a difficult one for doctors to predict as they are based on best guesstimates and published averages. No one is average. Everyone is unique. Initially G was given 18-24 then after his surgery that was reduced to 12-15 months. In the end he lived for 3 years 2 months and a day. The lesson I took from that was that this journey takes as long as it takes.

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.

I hope your meeting with the MacMIllan nurse goes smoothly tomorrow. I'll be thinking about you both.

For now I'm sending you both a huge virtual hug and lots of positive energy.

Love n hugs

Wee Me xx

Hi there,

Firstly can I express how sorry I am to hear about your sister.

I don’t want to sugar coat anything for you as that would be wrong of me to do that. GMB is the most horrific disease that I have ever encountered.  Every cancer is terrible, but GMB affects your whole body.

My husband was diagnosed with GMB November last year. Unfortunately, despite pushing for him to have chemotherapy, he was at the stage where he was too poorly to have this.

My Daughter and I were in denial and we did not want to hear his prognosis. Every day was a battle for us as we slowly saw him deteriorating. We took every day as it came, we did not think about the future, we just thought about the here and now and treasured every minute of every day that we had left with him.

Sadly my gorgeous husband passed away on the 28 January this year at the age of 56.

My only advice to you would be to be there for one another, expect waves of fierce emotion and expect every day to throw something different at you.

My Daughter and I were given hope on one day, but then it was taken away the next. I just sincerely hope that you can make as many memories as you can while you can.

I apologise profusely for not being able to tell you that it’s all going to be alright, I can only tell it from what I experienced.

Sending love to you and your family x

Thanks so much for taking the time to respond and share your own experience, I'm grateful for all the support links you've provided and take comfort that, how ever awful the journey is, there is a community of caring people out there to listen.

I'm so sorry for what your husband when through and the impact on you and your family; how brave of you to share your story to help others.

Some days I'm in complete denial, and acceptance feels a long way off.  I'm going to focus on getting through each day, and being as strong as I can for my sister and her husband and sons.

Thanks again, I'm off to do some reading now.

xx

Thanks so much for your frank and honest words, it really does help.  I'm so sorry for your loss and the awful experience you all went through.  It must still be so raw and I send my love to you and your daughter.

I completely understand your denial, I am in that place too.   I keep thinking my sister will be the one to have the miracle occur and make a complete recovery, or that I'll wake up tomorrow and it will all have been a bad dream.  

You're completely right that we need to take each day at a time and do our best to make positive memories, and that's what I will try to do.

Thanks again for reaching out, it really does mean a lot x

She may indeed be the one for a miracle. So much doom and gloom… but there are rays of hope. I was diagnosed last July and I am functioning totally normally, working full time and enjoying hobbies including extreme sport. There are many cases of people surviving years and years longer than predicted and most importantly having good quality of life. Good luck to you and your sister 

So sorry to hear about your sister. It's a terrible thing to have to contemplate - for her and for you all.

My wife is now 28 months from diagnosis GBM4 methylated wildtype. She went 22 months before recurrence, then had a second surgery, and she's doing really well - confused and tired a lot of the time, but active, engaged and enjoying the time she has.

Around the time of diagnosis and first surgery my wife got very disorientated and confused, couldn't walk for a while and became completely like a child - sounds a bit like your sister. This turned out to be swelling in the brain which was controlled by steroids. Once the swelling had gone down she came back to 'normal' over time - things improved greatly.

So it may be that when things have settled for your sister she will be stronger and more able to undertake SOC (standard of care - radio/chemo and then adjuvant chemo). Then she might easily have longer, even significantly longer than your surgeon has said - as per Tashie.

Good luck. This forum is a very helpful place. I don't often post but I lurk a lot and there are lots of helpful and supportive people here. x

Thanks Tashie,

So happy to read that, despite your diagnosis, you're enjoying a full and active life - long may that continue.

x

Thanks so much for taking the time to respond and share you're wife's journey.  It seems that no two experiences are totally alike and I'm pleased she is doing well and enjoying life.

x

I've come on to provide an update after our meeting on Tuesday.  

It's the best worse-case scenario, in that the medical team has agreed that Lorraine doesn't meet the criteria to receive radio/chemotherapy.  Neither, they say, is she capable of taking in the diagnosis so she doesn't need to know, unless of course she asks specifically.  The decision whether or not to put her through the treatment options to extend her life has been taken out of our hands, and it gives some sense of relief that we won't be looking back and agonising over it.  Lorraine has not experienced any real pain so far and we've been told she is unlikely to be in any pain as her condition deteriorates - which is a huge blessing too.

Preparations are underway so that she can come home in the next couple of weeks to receive palliative care for the 3 or 4 months we have left with her.  So we're focusing on making this time as comfortable and enjoyable as we can for her.  She deserves no less.

I held my 87 year old dad's hand whilst I told him on Tuesday evening.  It was the worst thing I've ever had to do in my life and I've been numb since.

Cancer is officially a B*s*a*d!

x

Cancer is indeed a bxxxxxd, I've never felt so bad in my life, as I did telling my boys I had a Glioblastoma, they are both early 40s but It was not an easy thing to do, and they have not once been negative about my diagnosis, instead being so supportive and loving.