Well it's me again. Unable to sleep I am sitting at the computer letting my fingers pound the keyboard in an attempt to offload my fears and worries.
An attempt to let them disappear into cyberspace, wafting through the black eeriness of the unknown, but then there's the problem......that's where we are, living in a world of uncertainty, the unknown, my fears and worries are just circling around me and my family. We're in some kind of vacuum where nothing can escape.
My thoughts are all over the place, it's hard to focus on one thing......so I'm just going to type, let the words fall out and wherever they land then so be it.
My husband is dying. The father of my two beautiful sons is dying.
I don't know how long it will be, more than what the doctor said in December and less than what we were thinking last week.
Last week he was walking, he was talking, he was eating, he was contributing. This week he can barely walk, he occasionally talks, he rarely eats and is sleeping 95% of the time, if not more.
Something is happening in his head, either the tumour is growing or the swelling is increasing and placing too much pressure on his brain. He is not fuctioning, he is not able to function, like he could function last week, well 3 days ago to be honest.
Mother's Day he was up and about, sure he slept for a few hours, but he ate well, joined in with the family celebrations, contributed to conversation. Then he went to bed........the headache started, the restlessness began, as the hours passed medication wasn't helping and then the nausea started. Dry wretching at first, then the vomitting. Now his medications had no chance of being effective, he couldn't keep them down long enough.
He had an injection for the nausea and of morphine for the pain. Nausea stopped, thankfully, pain reduced but didn't disappear. Then it began to increase its spread to his entire head. I got up to go and get some medication for the breakthrough pain, as I turned the light on I could see he was having some kind of 'episode'.
I thought he might be having a stroke.
His eyes were in some kind of frozen stare, his body was locked and he couldn't communicate with me at all. I didn't know if I should ring an ambulance or the palliative care team. I rang the palliative care team and then phoned my neighbour to come and sit with me. After a few minutes, not sure how many, he was able to move a little and could respond with some grunts, not words at that time. After a bit longer he could speak a little but would basically make a one or two word response and then fall asleep.
The palliative care nurse arrived, between the two of us we struggled to get him into a sitting position. He couldn't support himself at all and fell back onto the bed as soon as we let go. We got him into a sitting position again and the nurse squatted on the floor pulling him towards her to keep him upright while I set about stripping the top half of the bed (as he had lost bladder control during the 'episode'). When I picture it in my head, I think of the nurse as a tent peg, her and hubby's arms are the rope (stay?? is it called??) and hubby is the tent. Without the tension she created with her arms pulling his, he would have collapsed in a heap.
His whole body was leaning significantly to the left, he had very little strength. There were several 'absent' moments, where he seemed to look straight through us. Once we had him settled in a dry singlet, incontinence pants and a clean dry bed, he slept fairly peacefully.
The nurse wrote up her notes and left, my neighbour left and I fell into bed for some sleep. An hour later, he was experiencing tremors, so I got the 'medication drops' that had been left for that purpose and gave him the amount the nurse had drawn up before she left. I got back into bed, but the tremors continued. I waited for, and hoped, the medication would do its job.
Next, he told me he needed to use the bathroom, it was a mammoth effort to get him sitting up, then standing up with the aid of a walking frame, we tried several times to get him moving but his feet/legs just couldn't receive the right message.
Without going into all the detail (in an effort to maintain some dignity), the round trip to and from took about 25-30 mins and a whole lot of energy on both our parts. I would fall back into bed and within 15 minutes he would tell me we needed to repeat the journey. This pattern continued from about 4am through to 9am. It was highly exhausting.
The palliative nurse and doctor came to see him about 10ish, he is now catheterized and has a pump connected to administer his medications.
A hospital bed, together with a number of other aids to enable home nursing, are being delivered between 9-10am this morning. The nurse will come daily now.
It will be more practical to use the hospital bed, it will certainly make it easier for us to care for him........but........we've moved to the next stage.......he's not just 'sick in bed' now. Our home is now a hospital, our lounge room is now a hospital room.
I can't write anymore. I'm not even going to proof-read this (as I would normally do) before posting it.
I've got some of it out of my head, probably only for a little while, but in that little while.. I am going back to 'our' bed, to lay beside my husband because this may be the last time that I can, in our bed.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.