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Confusion and hospice care

Biscuit
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Hello All,

I haven't posted for a long time. My OH had a good few months when we got on with living our life together and managed to get away on holiday (Off to Scotland! There are ways of getting around the lack of travel insurance) and continued working on our first ever house.  At the start of September life dealt us the usual sledgehammer and OH's brain tumour decided it was done being dormant and wanted to ruin our life again.  OH has a grade 4 GBM tumour.  We woke one morning and he had severe headaches and was throwing up. He tried to get to the bathroom and collapsed.  September was taken up with a pattern of him going into hospital, being discharged and then having to be readmitted (sometimes by ambulance) a few days later. Finally three weeks ago he was taken in and a scan showed significant swelling and shift of the brain midline.  We were told that there was no further treatment options and he was given signifcant doses of morphine to try and control the symptoms. He began sleeping all day, barely talking (yes/no answers) and not wanting to eat.

He was moved onto end of life palliative care and referred to a hospice.  The doctors told us that it is very difficult for them to predict brain tumour end of life 'timelines', especially as OH is very young (just turned 30).  He was transferred to the hospice on Monday and they have been super, as I expected.  They managed to control his symptoms and he started waking up more and has started eating.  I am really struggling with the unpredicatbility of everything - I can walk into the room one day to find him wiped out and quite unrespnsive and the next day to be sat up and chatting.  The changes aren't related to drug doses, as this has remained the same since his admission to the hospice. Yesterday he managed to stand using a frame, the first time for three weeks. I am so confused. The doctors have talked about trying Avastin as a treatment to prolong life but say he is still too unwell to have it. I have been trying to prepare myself but everything but I can't help getting hopeful when he shows improvement and I am scared I am setting myself up for a fall.  I am trying to manage each day at a time, it's just so hard.  Is it normal for patients to be so variable? How can he be so normal one day and then almost comatosed the next? Last week he became so disengaged with the world and I thought I had lost "him" and that we would never have a proper conversation again - this week I am just thankful that we have been able to talk and i have caught glimpses of the man I want to spend the rest of my life with.

Is there anyone with similar experience who can give me guidance or just assure me that this yo-yoing is normal? I feel emotionally drained now with the constant (and extreme) highs and lows and news from the doctors or nurses just seems to wash over me - whatever they say.

Thanks

Biscuit x

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    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.

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    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.

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