Thank you all for your messages. It is extremely comforting to know that we are not alone in this incredible fight. I thought I'd update you all again.

Sadly we were not able to have christmas together as he had to be rushed into hospital with what was a suspected blocked bowel. Turned out to not be that serious and was just severe constipation (sorry for too much information) but whilst in hospital he caught shingles.

As of last week he was transferred back to the home and has been recovering but is sleeping even more than before and his short term memory has completely gone. Every time he wakes up he has forgotten where he is. If I explain to him what is happening (i.e. tell him he is in a safe place and that he has been very sick) he forgets what i have said at the start of the sentance by the time i have reached the end of it and asks again.  This is causing him a lot of agitation and is really upsetting to see. He used to have an absolutely brilliant brain so to see him reduced to this is so so hard. Everything else is quite 'stable'. He is eating tiny amounts (5 spoonfuls of whatever the meal is) and is drinking well. He has had to have another syringe driver fitted so is now on two, as the amount of morphine was too much for just one syringe.

I don't know what to expect anymore - have heard lots of people talk about it being a rollercoaster but it's more like a rollercoaster in the dark! I keep looking at the symptom chart on brain hospice site but either it doesn't match our case or we are still a long way off it. I have stopped looking - it doesn't help.

I hope all of your Christmases were enjoyable and relaxing and that those of you needing a bit of RnR got some.

Biscuit x

Hi Biscuit,

Have just caught up with your thead and see you didn't get the Christmas together, which is a shame.

Your OH has some stamina, he has been going through the mill for sometime now and in the end the poor man even catches shingles.

How painful for him.

I am so sorry to hear he is in an agitate state now. This is particularly hard for you.

Seeing your loved one dimminished can be heartbreaking.

I think you are right to stop looking for info on other cases, sometimes people and their cases are so indvdiual there is no comparison.

As you say you are on a dark rollercoaster.

However we are here to listen and support you  whenever you need us Biscuit. Do take care of yourself as well love.

Hugs

Annabel. xx

Hello all,

Thought I'd let you know that we're still here, I hate to use the word 'fighting' but perhaps that is actually apt in the the situation.

So what has happened since my last post? About three weeks ago, probably only a short time after my last 'update' J woke up one morning and couldn't stop throwing up. Nothing seemed to work to stop it and hospice attended the care home and switched all his meds to either being given through the syringe drivers or via subcut.  He went from 14mg of dexamethason (steroid) twice a day to 13 mg via subcut twice a day.  The Sue Ryder nurse explained to me that in pill form you don't absorb all of the drug, so switching to subcut, even at a slightly lower dose, is effectively an increase.  We all went back into 'crisis mode' and the pallative team gave us a 'less than a week' prognosis as J had stopped eating and drinking. However, the next day he began taking small sips of water and then within a few more days he was back to eating small amounts (suspect the steroids worked some magic).

Since then we have 'cycled' through several bizarre stages.  The morphine was increased during the latest crash and he began to experience hallucinations and general delirium, so when he was awake he generally would talk nonstop about absolute nonsense and would think we were somewhere else. My favourites have inclued being thanked for 'arranging such a nice hotel for our holiday' and him asking me not to get him anymore beer in the nightclub because he was drunk enough as it was. I had to chuckle - there's not a lot else in our lives to laugh about at the moment. His short term memory went around the time of my last update and it hasn't returned, if anything we've lost a couple more years (he told a friend that we had been together for 3 years when in fact it is almost 9). In the last two weeks his eyesight has deteriorated and he can no longer see clearly. He spends most of his time with his eyes shut but when he does open them his eyes kind of roll back, don't focus or sometimes both look different ways. He is such a sweetie though and when i asked him what he could see the other day (when he was starring into space) he told me I looked beautiful that day (far from the truth as I had rushed in from work and looked more like a drowned rat).

He is still sleeping a good 20+ hours a day, although because he rarely opens his eyes it is hard to tell sometimes if he is asleep or not and I have to constantly remind visitors to talk as though he is awake on the assumption that he hears everything. He's still eating and drinking quite well, although the amount he eats is quite small. He has a lot of swelling around his face, this sort of thing used to be caused by the steroids but it went down when he started eating less - but seems to have come up again. He is still talking, albeit mostly nonsense and sometimes hard to understand. On Sunday (two days ago) he was really tired for the whole day and started to have toilet accidents - I thought that incontinence had started but then yesterday he was fine again and able to alert me or the nurses when he needed help.

The positives (which I have to look hard to find): he is comfortable and in no pain. His memory is such that he doesn't remember his diagnosis and therefore doesn't seem to be emotionally distressed. His hallucinations have all been of nice things and seem to make him quite happy - maybe a weird one but it's comforting to know that he can escape this world of pain to his happy daydreams. And lastly, despite being given a 'less than a week' prognosis (again for the third time) by pallative care he is still here three weeks later and seems very stable.

Our journey is obviously to be a long one. I wish he knew how he is beating the odds. In case I haven't written before he was diagnosed with an anaplastic astrocytoma 7-8 years ago which was treated. He had a reoccurance in 2012, around May time, which was dianosed as a GBM. On 6 September 2013 he was rushed into hospital and has never been able to come home.  Around September 20 (approx) we were told he probably had 2-3 weeks to live. Since then we have been given two or three 'less than a week' prognosises and it is now February 18 2013 - almost 5 months since the first 2-3 weeks prognosis. Just shows that nobody really knows when it will be your time to go.

I was tired, but think I have moved through that now to some kind of acceptance stage that this is continuing. I'm still living on the 'knife edge' and each morning at work is agony because in the past it has always been the morning that I have received a 'panic now' type call from the nurses, so every buzz of my phone sends me tearing across the room to find it.

I'm sorry this is such a long update. Thank you for taking the time to read it. If there is anyone else reading this - potentially in the future as well, who is caring for someone with a brain tumour and is looking for information or a similar story, I want you to know that you can keep going. You will have days where you think you can't handle anymore and that something will break, but you will wake up the next day and your limits will have been redefined. You will keep going because there is simply no other option. If your loved one can do it so can you.

Love to all

Biscuit x

Oh Biscuit,

Thank you for the latest update. What a figthter your husband is. What he said to you about looking beautiful must have made you feel so proud. This must be an incredibly hard journey for you, loving hin like you do but seeing him like this. Do take care of yourself, best wishes, Brian.

Hi Biscuit

It was great to see your update and know that you are both 'hanging in there'.  Though my other half does not have a brain tumour (he has asbestos linked cancer and incurable diagnosis) it is amazing to read how you have found the strength (most of the time) to cope with the ups and downs and wonderful to share your thoughts with the forum so just wanted to thank you  as somehow it helps to have a small insight in to what might be.  Strangely it appeared on my computer just after I had arranged to visit a good friend who has been battling cancer since primary breast cancer diagnosis over 23 yrs ago.  Just before I go   tomorrow!  As you would say the battle continues and we are planning a good old fashioned gossip.  Look after yourself . Jules

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

What amazing fighters you both have become and am sure the journey you are taking together is by no means easy but it shows the love you have even at such a young age is carrying you through. (I now feel incrediby old!!!!!). It must be some relief to know that he is pain free and receiving the best of care to  keep him comfortable. Hope you have continued family support and are able to have a little bit of me time to recharge your batteries.  Take care and sending virtual hugs and peaceful thoughts.  Jules xx 

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.