Brain Tumour - anyone about?

[laketaupo]

Anyone about to talk about a grade 4 gbm?

[ElspethFlashman]

My Dad had that. Is it a family member?

[SoftlyCatchyMonkey1]

Have you been diagnosed with this OP?

[TwitterQueen1]

I don't know about brain tumours but here to listen.

[UseHerName]

Yeah I can, what’s up?

[Frenchplait]

I’m happy to chat. My mother was diagnosed with gbm a few months ago.

[laketaupo]

Long story short, dm has a stage 4 glioblastoma and has about 2 months left (according to prognosis given in July 2017) and went into a nursing home in September 2017.
She’s really gone downhill this week, barely able to see (texting has basically stopped) and she is having quite a lot of confusion. I’m run ragged in hospital with dc2 (bronchilitis) and dc1 (2 years old) needing childcare obviously.
Wondering if anyone wants to share experiences of the final 2 months.

[Otterseatpuffinsdontthey]

Close relative of my son-in-law.
Will try to contribute anything helpful.

[Frenchplait]

Sorry to hear about your DM and that your DC is poorly. What a stressful situation. . I don't have any personal experience of the final stages sorry. There are several very active FB groups which you might find helpful if you are not already on them. I have come across a GBM progression timeline previously, although didn't read it.

Is your DM taking dexamethasone? My DM has recently restarted steroids as her symptoms increased, but she has improved vastly since. Might it be an option to start or increase the dose?

I hope that your DC is out of hospital soon. Take care.

[Iamchanging]

Hi. My mum died of this far too young 5 years ago. She lasted 4.5 months from initial diagnosis. I’m so sorry you are going through it as well. Essentially the final month of her life she was getting increasingly confused. About 2 weeks to go she fell into a coma for 4 days and was nil by mouth, but then randomly woke up again after us being told she wouldn’t. However apparently sometimes the starvation can shrink the tumour temporarily.
The last week she wasn’t able to walk or really talk any more but we took her out for walks in her wheelchair which made her smile. Last two days she didn’t really wake up at all and didn’t recognise me.
A few things as well, she slept loads and when she could talk a bit she talked gibberish. Keep pushing to make sure your mum has morphine at all times even if she is out of it. Right at the beginning my mum was in a coma for a couple of days and when she woke up she said it had been so painful and she could remember being in pain, she made me promise that if she was ever out of it again I would keep her topped up on morphine just in case. I had to argue at times with the nurses but I’m so glad I stuck to my promise just in case.
Right at the end the nurses knew that it was time and we had a couple of hours to say our goodbyes. She sort of had a death rattle breathing and was so thin and a funny colour.
Once again I’m so so sorry. It’s just shit xx

[laketaupo]

She’s getting increasingly confused , I think she is on steroids and Keppra (haven’t touched base with gp at all and she was discharged by oncology dept at hospital in August ). Need to get a DNR signed ASAP too although I have POA and next of kin rights so not too much of an issue if it doesn’t get done.
She does refuse her medication at the Home apparently sometimes , I find it pretty hard to be around her these days. She forgot my birthday this week, can’t remember baby dc2 name. Sigh.

[laketaupo]

@Iamchanging how old was your mum? Mine is 53 (I’ve only just turned 23!)

[Iamchanging]

Wow your mum is even younger, mine was 67 and I was 26. The last couple of days my mum couldn’t remember me either which was so hard. She talked about having two daughters, Dsis and a name we have never heard of! She was so different by the end, about 5 days before she died we went for a pub lunch (in her wheelchair) and although she couldn’t talk she kept pointing at the liver option. She HATES liver! Anyway she insisted and wolfed the whole lot down bless her. It was the most she had eaten in days - so strange.

[ElspethFlashman]

www.btbuddies.org/hospice-palliative-care/51-symptom-timeline.html

I found this quite accurate at the time. I will warn you that the estimate is fairly irrelevant when they start going downhill. We were given 3 months and got 2. It was rapid enough in the end and then the last week was asleep, catheterised and nil by mouth.

Steroids were stopped when it was clear they couldn't hold back the tide anymore. They are great when they work, but at a certain point the tumour is too much for them and the dosage increases but the person is still deteriorating. There's really no point in them then. After that they tend to go on the syringe driver with the cocktail in it. Morphine, medazolam and another one I can't remember (I think to keep down secretions in the chest).

My Dad died in his sleep effectively. It could have been worse for him, dreadful though it was for us.

[laketaupo]

She thinks that the medication they give her in the morning (not sure what it is) makes her eyesight bad as a side effect. I think it’s probably the Tumour pressing on the optic nerve myself but there we go. If I’m still in hospital on Monday I’ll go to find the palliative team to try and make some headway with it all. She won’t be going into a hospice I don’t think , just staying in the care Home. It’s her birthday tomorrow too.

[laketaupo]

Thanks @ElspethFlashman I’ve found that to be quite useful but handy to be aware that it may be faster than that.

[SuperMoonIsKeepingMeUpToo]

I've a relative with this diagnosis who has recently been given a couple of months. Was diagnosed in the summer. It's a horrific disease and I'm so sorry this is happening to your mum, OP. My relative is much the same age but not my mum.

[Eryri1981]

My dad was diagnosed July 16 and died July this year. In the end he went quicker and less traumatically than expected.
He developed seizures, and I think a combination of starting the anti epilepsy drugs and general deterioration decreased his mobility, so he went into hospice whilst a more comprehensive care package was arranged.
On arrival at hospice he had a chest infection brewing, after a week of amoxicillin he didn't improve, and my dad (and mum) made the decision that he wouldn't take the next course of antibiotics and the infection killed him a week later. Which was much better than the horrendous headaches etc that the tumour would have eventually brought about (he was only taking paracetamol at the end). Refusal of medication as a tool to hasten a more peaceful death was something we had discussed as a family before my dad even went in for his surgery, and I absolutely feel it was the right decision for my dad to make.
We (DM, db and myself) all had lpo for health, but dad was still in a position to make the decision himself, had he not been we would have made the same decision for him.

[laketaupo]

Really useful to hear everyone’s stories thank you.
It was her 54th birthday today.

[cowatthegate]

Hello everyone - still here, she's back in hospital again, looking 6-8 weeks left I think. Very confused, doesn't know my name