Hi Biscuit,

Just wanted to say I'm very sorry to hear your husband's brain tumour has kicked back in to life again, ruining your happy times.  When my husband was dying, he was not in the hospice but the hospital (he had so many complications going on I think the hospital was a better place for him).  We had a great palliative care nurse who would always chat to us and answer any questions we had.  Do you have someone like that you can talk to? I do think there are ups and downs on this "journey".  Unfortunately for my husband it was mostly downs. Then again we were told at least 3 times during the 2 years of his cancer diagnosis that he wouldn't make it so whenever he had good days we tried to grab them with both hands.  I am afraid that the unpredictabiluty of your situation is something no-one can control.  Towards the end, my husband had enough and he couldn't take the pain or suffering any longer.  I think this was a turning point for me in terms of wanting him to keep fighting - I just wanted him to be relieved of suffering even if I knew what that ultimately meant.  Now that he is gone I think I am kind of numb to what has actually happened, because watching the suffering without being able to do anything was torture.

Anyway, just wanted to say that all you can do is be there for him, no matter if he is having a good day or a bad one.  I hope for as many good days as possible for you both in the time to come - and make sure you are completely happy with how comfortable he is and if not question his treatment.  It's amazing how sometimes things wont be done for someone unless you ask.  Take care and come back and let us know how you both are.xxx

I thought I'd come back and update you all.

OH is still here with us over three months later.  He ended up being discharged from the hospice and moved to a care home, as his needs are more than I can give. I am still working full time to pay all the bills etc and we had to accept that having him home was just not viable, aspecially in our house (toilet upstairs, no room for a hospital bed downstairs etc).  He is on a constant syringe driver and has oxycodine 'top ups' from time to time. What we have seen so far has been a very very slow erroding of the man I once knew.  He has been relatively stable for the last month, awake and chatty but has been bed bound with no mobility and had stages of erratic behavour - which I think was caused by a high dose of steroirds (Dexamethason) he was on 32 mg a day but this has been reduced in the last week to 28 mg a day. It has been an extremely hard few months and after the original 'crisis' wore off a weird normality set in. Even without having to provide the full time care I am exhausted, as are the rest of the family.  Things have started to deteriorate again this week as he has slipped back to sleeping all the time and is having quite bad short term memory problems. I think a lot of it could be due to the reduction in steroids but I have given up second guessing.  We are hoping to have Christmas day together as a family if he is awake enough to do the transfer home. We are all so physcially and emotionally drained now. In the hospice we were told several times that he probably had 'just two weeks' left. Now over a month later it is clear that so little is known about brain tumours and the progression. I am not being critical of the hospital and hospice staff as they are all amazing, it's just an observation really. The hardest thing is the feeling that we are just sitting back and waiting. There is no further treatment available to him as he was rejected for the Avastin so we just have to wait and watch. I want to try and share what we have experienced as I seem to spend a lot of time googling for similar stories and not finding many. Most GBM patients seem to deteriorate very quickly once they enter the hospice stage so I am putting this out there for anyone wondering what is going on with their loved one - our experience so far of end of life stages for GBM IV has been a bit different.

Timeline:

Treatment stopped: Mid August

Hospital Admission: Mid September

Hopsice Admission (start of end of life care): Early October

Care home transfer: November

Significant changes noted: Mid December, but I have no idea if it is progression of the disease or reduction of the steroids.

Thanks all for listening. I know we are so lucky to get this time that many do not get and to have a chance of spending christmas together. It's just difficult to remind myself of this as it really feels like every stage is being dragged out and I have to watch him slowly fade. I would say it's hard to describe but I know there are many of you out there that will just "get" what I mean.

Biscuit x

Hi Biscuit

Just wanted to let you know that your message has been read and my heart goes out to you all.  Another family affected by cancer and I do hope the OH makes the transfer for a family Christmas Day. We are spending 3 days at my sister in law's (so  I do not have cooking pressures this year) and hoping that hubby can remain comfortable and pain free to enjoy the grandchildren's excitement.  Take care and sending hugs.Jules xx

Hi Biscuit,

We have not spoken before, but I have just read your update about your husband's condition, and am both amazed and saddened to read your story.  It seems as though your husband is beating a lot of the odds, but at the same time, it must be so hard for you to watch him change from the person you knew him as.  I also really understadn what you say about feeling like this stage is being dragged out - it must be a constant conflict in your mind as to wanting him with for as long as possible, but at the same time, minimising his suffering.  Life is so cruel that it throws such horrible situations at us.

My situation is different to yours, I lost my Mum in May, so this will be our first Christmas without her.  We have planned a quiet family Christmas, and are hoping for some time to rest and recover from the year's events.  It is impossible to say whether it is harder to be in your situation, or mine, but to be honest neither are situatiosn that can be compared as are both so impossibly hard to deal with.  All we can do si try to take whatever comfort is available to us during this time.

I wish you and your husband all the very best for the coming days and weeks and beyond, thinking of you,

Catherine x

Hi Biscuit,

Just read your update on your OH journey. Thank you for the update.

I really hope you and your family get to spend Christmas day with him at home.

You have all been through so much I am not surprised you are exhausted.

I can only wish you all many Christmas greetings and hope you have a peaceful time.

look after yourself Biscuit

Hugs

Annabel. xx

Hi Biscuit,

Thanks for the update. I am sorry to read that he is slowly deteriating this week. But what a fight he is putting up, his determination is remarkable. My mother was much the same and surprised the medics by how long she lasted. It seems that somehow our loved one find a reserve of strength and energy from somewhere.

But it must be so hard watching someone you love slowly fading away. I often think it's much harder for the close family than it is for the patient as you are trying to show a brave face while often falling apart inside, and that's so hard to do as I know all too well.

I do hope you OH is well enough to spend some time with you tommorow. Thank you for the support you have given me. Sending you all the best wishes, Brian.

Hi Biscuit, I'm so sorry you are going through this very difficult time. My heart goes out to you as you struggle with such heavy emotions watching your OH try to deal with the challenges that this difficult disease causes. I sincerely hope that you all get through Christmas with him at home and somewhat able to enjoy, if only on a small scale, some of the festivities of the season. He is certainly a very brave soul, as are you and your family members as you all take this journey together. I know your hearts are heavy with sorrow, but sharing the love and concern that you have with one another will help to get you through this.

Hugs to all of you. xxxx

Lorraine   

Biscuit.

I hope you managed to have a peaceful Christmas Day. I can't offer any practical health, as brain tumours are outside my personal cancer experience, but you are in our thoughts.

Let's hope 2014 is kinder to members of our exclusive online club than 2013.

Love

Dave x

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

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

Such a shame that you were denied Christmas Day together at home and then he had to catch shingles too (not a nice infection when in reasonable health so must be driving him mad). It must be so hard to keep having to repeat everything as his short term memory has been affected and no doubt the amount ofmorphine he is on for his pain also having a dulling affect.  Wish I could offer you more than a virtual shoulder to lean on but hope you have some support at hand for as hard as it is for your other half, you are suffering too.Not sure if if would be worthwhile but when Dad on morphine we used to write things down for him to re-read when we were not there(and he had photo album with photos of the family/friends in which the hospice staff used quite a bit and that seemed to bring some comfort-he too used to be cross that he could not remember what he had been told just minutes before.

We did manage a good Christmas at hubby's sister (so I got lots of R&R for 3 days). We have next check up for hubby at the end of the month and though he still says little about how he is feeling Ido know he is struggling a little more with eating (have reduced portions to child's size) and also that his GP has re-assessed his medication for when thecurrent prescription finishes as the slow release drugs are not quite lasting the distance. I never did enjoy riding the rollercoaster and this one is no better.

Look after yourself and sendinglots of virtual hugs at this most difficult of times. Jules xx

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