Experience with timelines - GBM mum

Hi FluffyClouds88

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

I'm supporting my husband (now 53) through his GBM4 journey. He was first diagnosed in Sept 2020. We're heading towards the end phase of the journey but we've not quite reached it yet. We speak to the oncologist on Monday.

Something I've come to realise over the past couple of years is that everyone travelling this road is unique. So much depends on where the tumour is, the size, what its impacting, their general health otherwise etc so there are no hard and fast rules about how long a person can last sadly. I'd suggest talking to your mum's medical team to gauge when to advise family to travel back. They are best placed to advise here.

I took the liberty of looking up some information that you might find helpful from the main website- If the person you care for is dying | Macmillan Cancer Support

You can also reach out to Ask an Expert via this online community or give the helpline a call. 

When we spoke to the oncologist a few months ago I asked about what to watch out for and be concerned about. The main thing he mentioned was headaches, nausea and seizures and we have been warned that a seizure could happen at any point and could end the journey. 

I wish I could offer a more definitive answer. Humans are resilient creatures and there really are no hard and fast rules. This is a safe and supportive space and I'm sure other members will be along shortly to share their words of wisdom.

Sending you love and light and hugs

Wee Me xx

Hey FluffyClouds,

Sounds like your mum is pretty tough :) . I understand that 40 days is about the limit for an otherwise healthy person on just water, but as Wee Me says, everyone is different.  While I don't think you are going to get accurate guidance, you must be into the last couple of weeks .  The real telltale is when she stops taking water - at that point the body can only last a few days.

When my wife was in a similar place to your mum, I was trying to decide whether to get my daughter home from uni and the hospice nurse said she always gives the same advice when people ask... just do it. I think that was good advice.

Perhaps you can say to your relatives what I said to my daughter... "I think if you come in the next day or so, then there is a good chance she will still be here.  I don't know any more than that."  That way, you are not making a prediction - based on information you can't know, and it is up to them to decide whether to come or not.  You have enough on your plate right now without taking responsibility for other people's decisions.

I recall that season towards the end.  How I didn't really want to leave the house, how I wanted to make sure someone was with Fi all the time, how I hated watching her have to go through it all.  I am grateful for all the people who helped to keep her comfortable and resting, but even so, it is a really difficult time and my heart goes out to you.  You will get through this.  I hope you have a couple of people you can trust to be with your mum and are managing to get some time away as well.

Big hugs...

Pete

Hi FluffyClouds88. 

I feel your pain as I went just the same with my amazing Mum. Very healthy until she got diagnosed Dec 21, operated on and tumour was methylated but that didn’t help at all. They managed to get 95% of it out and mum’s scans were stable and no regrowth until Sept 22 when it had now come back and spread with a vengeance to the other side. 

Thing then unfortunately went downhill from there as mum got weaker but was still walking albeit slowly and with me and the carer helping. Come early October and mum became weaker on her left side and couldn’t even hold a cup anymore and then a week later like your mum, she was asleep 90% of the time and not eating at all and just taking small sips of water. Had to call an ambulance as mum had her 3rd seizure and they were brilliant with her as they always were and took me to one side as said ‘ We don’t want to take mum in as she seems comfortable now and if we are being honest we give her a month five or take’ they have me a hug because I just broke down and it hurts even typing this! 

Mum sadly passed 2 weeks later but no pain thankfully. Carer had come to clean mum, put on fresh clothes then when we got her up, mum has stopped breathing and CPR was done for 10 minutes but I knew mum had gone. Just before mum stopped breathing she had looked at me and tears started coming and I just told her I loved her and held her hand and to always be with me. Mum was 73. 

It’s such a devastating illness and to see mum go through it has destroyed me. I’m sorry I can’t be the bearer of better news but just giving you my story  I wish you and your mum all the best and hope it’s as peaceful as it was for my mum.

Take care

Hi Pete,

Thank you so much for replying.

I've taken your advice and told her siblings it's best to head back as soon as they can. As you say, at this stage there is so much else to deal with both practically and emotionally, it's not an extra burden to carry right now.

It truly is an awful thing to see someone you love go through. 

Hugs and best wishes to you and your daughter.

FluffyClouds x

Thank you for taking the time to reply.

Im so sorry to hear about your mum. It was comforting to hear that she passed peacefully, as I'm very anxious about what the end will bring, this has given me some hope.

Best wishes to you 

FluffyClouds x

Thank you for replying, I really appreciate it. I'm so very sorry to hear about your husband. Sending you hugs and best wishes through this difficult time.

Sadly my mother's wonderful hospice carers have not been able to shed much light on the subject of time, and she has not been assessed by a specialist since she was discharged from oncology after treatment ended, but as you say, there are no hard & fast rules so it's perhaps the case that they don't want to estimate. It just feels a little as though we are in limbo.

Take care,

FluffyClouds x

Hi FC

If you ever need to talk I am here, I am going through exactly the same with my sister and your path is identical to mine, dates, changes etc,  word for word, it is very very sad to walk this journey and I never dreamt we would be here but I think we have to be there for each other and be with your family member over this final stage of this horrendous journey, much love. 

Hello Laura, thank you for your message and kindest of words.

My mother passed away peacefully last week. However my father is still battling lung cancer so for my brother and I, this goes on on some level.

If you need to ask anything then I am here to listen. As you say we must support one another.

All the best

FluffyClouds x

so sorry for your loss, FluffyClouds88. Sending you love and light and hugs.

Stay strong and remember we're here for and the helpline number is there if you need it.

love n hugs

Wee Me xx