Hi Biscuit,

I am so sorry to hear your OH's tumour has become active again. This cancer is a real roller coaster ride, full of up's and downs. With regard to your OH condition being so variable, when my mother was in the later stages of breast cancer which spread to her brain, when I went to see her in hospital, someday's she was quite with it other days she was really not with it, and I feared the worst. But from somewhere she managed to dredge up some hidden reserve of energy and the next day she would be more alert. She did put up one heck of a fight. This may be the same with your dear husband for he would not want to leave you. The care the hospice gave my mother, far exceeded the care she got in the hospital.

How are you yourself coping with this roller coaster ride of emotions. Cancer doesn't just affect the patient, it affects us all and I often think it is harder for the family of the patient for we are trying so hard to appear strong for them while falling apart inside. It is so hard to deal with and as so many people on here say we can only deal with it on a one day at a time basis. But as you know, anytime you need to talk, your virtual friends on here will do all we can to support your and lend a listening and caring ear.

Do take care, sending best wishes your way, Brian.

Hello Biscuit,

Glad you felt able to come to the forum again.  Its so difficult when the ones we love are on the roller coaster cancer trip.  My only experience with hospice care was with my Dad some five years ago.  The staff were fantastic both with him and the family as a whole and I was often told by them to expect varying degrees of alertness on sometimes an hourly basis.  They did say that apart from medication causing different feelings (especially if eating/drinking were erratic) sometimes the person can choose to 'shut off' just by sleeping more.  Though my husband has not yet required hospital/hospice admittance he is on quite high pain medication and some days finds it more of an effort than others to concentrate/focus and think this is his way of dealing with his illness.  Not really sure this helps with your queries but I do know that posting on this forum has kept me sane during this most difficult to journies.

Wishing you a peaceful weekend and come and chat anytime as I am sure simply sharing helps us all.  Take care. Jules x

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,

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