Hello all. Just a quick update to say it's nearly a month since my last post and we're still here. Just gone through month 6 and starting month 7 of hospice care. I don't think anyone saw this coming. On the whole he is stable although in the last week incontinence has really started and he is eating substantially less (but still eating and is drinking quite well). At the weekend he had the first seizure he has had since September (when the first crash happened). He doesn't always remember who I am anymore but is still waking up and talking to us all - still crazy halluncinating stuff. His circulation has been a bit bad and we now have to position his 'bad' arm (which has been weaker ever since he was first diagnosed) across his chest and 'up' to try and help circulation to it. He seems comfortable and tells us that he is not in any pain. Never ever imagined I'd have to see all the things I have seen at 28 years old.

Hope you're all well.

Biscuit x

Hi Biscuit, I was just reading your thread. My father in law has stage 4 Glioblastoma. 

We are expiriencing lots of ups and downs but I think we’re just at the beginning.

My father in law was diagnosed in May and has slowly deteriorated, well physically. He has no strength anymore but I’m puttting it down to the Dexamethasone (steroids)

Somedays he’s wide awake and others he’s exhausted and on the exhausted days you think uh oh this can’t be good but then he perks up again. 

The reason I say at the beginning of the rollercoaster is because he’s slowly becoming more confused and confusing dreams with reality, this has only happened this week.

It’s quite a lonely experience. 

Hi Binks,

My original post was made almost 5 years ago now, so a lot has changed, but I couldn't bear to not reply.

Firstly I am so sorry you are going through this. Of course every family's experience, particularly with brain tumours, will be different. But I understand entirely about the rollercoaster feeling. The unpredictability makes it all feel so uncertain and uncontrollable, which it is I guess. I used to spend hours searching for blogs and other hospice care posts to try and find out 'what to expect'. Perhaps that's how you found my post? I'd then spend my time looking for signs that other people had mentioned, which was really just my brain trying to feel like it had some kind of control over the situation.

I remember that the confusion between dreams and reality almost brought a lighthearted side to things at times, when really it was just horrendous that he was in that way. How is your father-in-law doing this week?

I don't know if I can help, but if I can answer any questions about what we went through then I will try. Please know my thoughts are with you all and I hope you can feel a little less lonely here.

Hi Binks,

My original post was made almost 5 years ago now, so a lot has changed, but I couldn't bear to not reply.

Firstly I am so sorry you are going through this. Of course every family's experience, particularly with brain tumours, will be different. But I understand entirely about the rollercoaster feeling. The unpredictability makes it all feel so uncertain and uncontrollable, which it is I guess. I used to spend hours searching for blogs and other hospice care posts to try and find out 'what to expect'. Perhaps that's how you found my post? I'd then spend my time looking for signs that other people had mentioned, which was really just my brain trying to feel like it had some kind of control over the situation.

I remember that the confusion between dreams and reality almost brought a lighthearted side to things at times, when really it was just horrendous that he was in that way. How is your father-in-law doing this week?

I don't know if I can help, but if I can answer any questions about what we went through then I will try. Please know my thoughts are with you all and I hope you can feel a little less lonely here.

Hi Biscuit

I just wanted to say thank you for your posts. My brother is 31 and has grade 4 glioblastoma, having progressed from an "aggressive" astrocytoma, so it draws some parallels to your partner's journey. 
2 months ago my brother was given a 2-3 month prognosis and he's currently staying at my mum's on a hospital bed in the living room, desperate not to go into hospice care until he has to. He is sleeping a fair bit and had most symptoms we'd expect (occasional seizures, very limited mobility, a few bladder control issues recently, his speech is mostly limited to one word at a time and is hard for him to find the right word, periods of confusion, really swollen feet etc.), but his appetite remains as strong as ever, a side effect of the steroids. 

I found your post while looking for help spotting end of life symptoms so I could be prepared and help my mum and whilst this journey is never easy on loved ones, your story did help me understand the variability of experiences and I liked what you said "if your loved one can find the strength to go through this, so can you'. 
 

I know your original set of posts are from a few years ago, but I just wanted to say thank you for posting them (in case you receive this) and I hope you are doing well. 

Take care.