End Stage GBMF

Hi ECA3

a warm welcome to the group. So sorry to hear about your mum's diagnosis and all that you are going through. Life is too cruel.

My husband was diagnosed GBM4 in Sept 2020 and I share a lot of the same fears are you. He originally had surgery followed by the 6 weeks of oral chemo and radiotherapy. He coped really well with it. At the start he was given strong anti-emetic medication for a few days to combat the nausea and was told to take them whether he felt sick or not. He was also given a lower strength to take if he needed them over the 6 weeks but he never took any of them. Fatigue was the only side effect that he had. That kicked in around week 4 and lasted for a about a month after the treatment finished.

If your mum is fatigued now and you're worried about how she'll cope, I'd push for a conversation with her medical team if I were you. I'll be totally honest here, my relationship with my husband's CNS was awful. He didn't help as he would lie to her and tell her I wasn't there so I was excluded from important discussions. This was all at the height of the covid restrictions on Oct/Nov 2020. I pushed to speak to her, eventually emailing her and did get a face to face chat with her before my husband's last appointment with her. He's a control freak by nature and he played her without her realising. She was raging. It was a very frustrating and emotional time for me though so please make sure you keep the communication channels open.

As for timelines, I've come to accept that these are guidelines and best guesstimates based on published averages. Back in Sept 2020, we were told without treatment my husband had 3 months, with surgery and treatment he maybe had 12-15 months. Both were horrendously short timeframes to hear but 2 years and 2 months later he's still here, still physically very fit. Mentally, less so as his tumour has impacted speech, language and understanding. A second tumour was identified about a month ago and we are waiting to hear what the next few months may bring. Not knowing and not having a timeline is like living in a abyss. A timeline doesn't change the outcome though sadly and, in our case, we were told it was most likely a massive seizure or stroke that would bring the end and that that could happen at any time. Now, we take each day as it comes.

As to what end stage looks like? I'm asking the same question to be honest. There are posts further down this group where other members have shared their experience. I'll warn you, they are not easy reading, but they are honest accounts. When I have asked my husband's oncologist what we should be concerned about, up until the last appointment he has said, "Headaches. Nausea. Seizures." We spoke to him last month when the second tumour was confirmed, and he said to "Notify us of any changes." Read into that what you will. Everyone here is unique. Everyone goes through a similar but different journey here but if something feels "off" and you're concerned, call it out would be my personal advice. You know your mum better than them.

This is a really safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You are 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.

Something that is also important here- please take time to take care of yourself. Taking some "me time" isn't selfish. It's essential to help you keep your own batteries charged and for maintaining your own wellbeing. This is tough gig. So go for that coffee with your friends, or go to the gym or for that walk. Do whatever it takes to help you feel like yourself.

I hope some of this has been helpful. 

For now, I'm sending you a huge virtual hug, Stay strong. Remember to breathe.

love n hugs

Wee Me xx

Hi,

Thankyou so much for taking the time to respond. It's positive to hear your husband responded well to his treatment.

We, unfortunately seem to have the same issue with the CNS. They seem to take her word for it, and she's telling them she's 'abit tired' with a headache so they are taking that as gospel. I am really trying to push a face to face appointment which the CNS agreed to, but then backtracked when they spoke to my mum. 

I worry that because she's not being truthful about her symptoms, they truly don't realise how poorly she actually is. As everyone's journey is so different, it's hard to know what would be considered normal for this point and what wouldn't. 

It really does feel like an abyss as you described it. It's comforting to read on here how many people have had treatment successfully. We've already been told that the treatment is just palliative, it's not going to improve or shrink the tumour, just prolong her life. It appears from reading different threads on here that there's a difference between palliative with treatment and palliative as in "nothing more can be done". It's feels like a crazy rollercoaster which we are trying to navigate, but at least we are not alone, although I wouldn't wish this horrible disease on anybody.

Good luck in your journey and thankyou for taking the time to reply to me, it's very much appreciated xx 

Hi there you need to push for professional help and stay strong and positive, your mum is not a statistic she is your whole world who needs you , gbm is cruel . Please don’t take no for a answer , take her to emergency hospital if you are worried.

HI ECA3

just a thought - do you have Power of Attorney for your mum? If not, might be worth looking into. The welfare side of it would mean that you have more rights when it comes to talking to her medical team than you do simply as next of kin. Unfortunately, in our case, my control freak husband named his brother as his POA and he's useless, so it has restricted the information I have been given.  

It never ceases to amaze me that drs discount the information that family can give and don't seem to be able to see that the patient isn't always wholly truthful. My husband's standard line is "I'm fine." Even on that last call we had a few weeks ago when they told us about the second tumour, he just sat there saying "But I'm fine."  Denial is his coping strategy, and he no longer cares or comprehends that that is tearing the kids and I apart. My son and I end up playing good cop/bad cop to an extent because if i raise an issue or explain changes we've seen, my husband gets really angry with me and verbally lashes out. However, if my son says it, he accepts it better, so he tends to initiate the conversation with the oncologist, and I fill in the details. It's constantly treading on eggshells. 

take care. Stay strong.

love n hugs

Wee Me xx

Oh Wee me, your story could be a carbon copy of ours. I'm so sorry to hear you are going through similar to us. My mum is exactly the same, the classic "I'm fine"

She has a partner but he's not all that useful and I know it's definitely going to cause difficulties down the line.

We are trying to stay strong and positive but that is so so difficult when you can see the decline in front of your eyes.

Power of attorney is in process but again I'm having to push it which is causing great frustrations all round. I wish there was an easy answer to all of this. Me and my siblings play the good cop bad cop between us all the time because it seems to be the easiest way! 

I don't want to be so negative all of the time but I just want to know what to expect for when the time comes, I feel like we are almost going to go through the grieving process twice and it's so hard. 

Sending you lots of love x

I know what you mean about going through the grieving process twice. I was talking to someone the other day and was saying just that. Ours kids are now 22 and 24 but they've no experience of losing anyone- something I should be grateful for. I feel that we all grieved for my husband back in Sept/Nov 2020 but those wounds from the initial shock of his diagnosis have scabbed over and over two years down the line, he's still with us. Now that we are starting to see changes and are facing the challenges tumour #2 will no doubt bring, I feel we are all grieving him a second time. I feel for the kids especially here. It's tearing us all apart and all we can do is ride it out.  All part of this cruel GBM4 journey.

My mother-in-law died from a primary brain tumour back in 1993 (unrelated to my husband's tumour apparently and just sheer bad luck) She passed away very suddenly. Long story short, she had a biopsy on the Wednesday never fully regained consciousness and passed away peacefully on the Sunday. Traumatic as it was at the time, I've come to realise that short and sweet is far preferrable to this living hell for all concerned, and I include my husband in that.

I hope you get some joy with the CNS this week. Keep fighting your corner there. (Tragic that you have to)

love n hugs

Wee Me xx