The Prognosis

a picture from our last holiday in Ullapool

An entirely unapologetic life-and-death related post.

The fire is lit, the man is asleep.
I have just written to The Boss to request information on my entitlement to paid time off, offering to go into work to discuss it if required.
I told her that it had been made very clear to me today that I should not leave FL home alone for extended periods as he is terminally ill and increasingly unwell.  I am waiting for support from the local hospice, on a day patient basis, to discuss pain relief, as he has refused to consider admission there.
And that pretty much sums up what happened today.
We were at the hospital at 10.30, having overslept  til 8am, after a pain-filled night.  I then had the dog to walk before we set off.  There were several floods to drive through on the way.
When we arrived (walking very very slowly from the front door) I told the receptionist he might need another blood test, as it had not been done since Thursday.  And then we waited.
At 11.45, a nurse appeared and woke him up – she was from “upstairs” where they had been waiting all morning to give him a blood transfusion, but they couldn’t go ahead without another blood test today and it was now too late for that to be done.  I knew nothing about “upstairs” as we had been told to come to the clinic as usual.  The nurse went off to find out what to do next.
At noon, the Consultant came to fetch him and we each had to take an arm to help FL along the corridor at a snail’s pace.
She asked how he had been since leaving hospital and I told her the highlights.  She tried to engage him, but even once his hearing aid was in, he was struggling to keep up with the conversation.  I explained that he was asleep for about 22 out of every 24 hours and that I had even tried withholding top-up painkillers in an attempt to keep him awake long enough to take his pills and eat breakfast – he hasn’t eaten a proper meal for days.  He can’t bend his feet to get his trousers off and on.  He can no longer stand upright.  He can only walk with the support of my arm / the wall. 
The Consultant explained that she has stopped monitoring his myeloma because it is no longer relevant.  The only thing they can really offer is pain relief, and when the myeloma begins to upset his kidneys it will have to be something other than morphine.  He may find blood transfusions helpful in future, but his haemoglobin is at an acceptable level without one this week. (Phew!)
She said to him that she needed to discuss with us whether home is the right place for him now… 
He heard that alright and was very abrupt with her.  He said he didn’t want to go to the hospice. She asked why not.  He said it was somewhere that people went and didn’t come out again.  She smiled and said that this was not the function of the place:  it was somewhere that people who are already terminally ill go to be cared for in an appropriate way, where people understand their needs and are professional palliative carers.  “So are you telling me that I am in that state?”
Um…. yes.
He was visibly shocked. 
I thought he understood.  I really did.
She asked me what my situation is as regards work and I explained that I was due to talk to The Boss tomorrow.  She proposed getting the MacMillan nurse to investigate outpatient support from the hospice, and to involve the GP.  I explained that the GP had not followed through with his promise of support once FL came home from hospital and had not returned phone calls.  The holiday period was obviously a factor in this, but nevertheless…
I also told her that Social Services has offered an alarm pendant and “possibly” help with a wash once a week. She was surprised that this was all that had been suggested.  She asked if we had been offered a wheelchair so he could get out and about?  No.  
FL bristled at the idea of a wheelchair and said he was disappointed that nobody had suggested a physiotherapist to help him get his strength back.
There was a pause.
The Consultant very kindly explained that his muscles are wasting due to the cancer, that this is not reversible and there is nothing to be gained by tiring himself further.
It was clear that FL was upset by the conversation, so we took him back to the waiting room and then went to find the MacMillan nurse.  The nurse has undertaken to speed up a hospice outpatient appointment on the back of a referral from the Consultant (to be made today), liaise with the GP, and investigate whether the local hospital could offer anything along the same lines as the hospice, if only to let me get to work / some respite for a few hours a week.  We agreed I would report back once I had been able to talk to The Boss.
So there we have it.
We go back to see the Consultant next Tuesday, by which time she hopes that we will have a proper support network in place, with the help of MacMillan.
You are going to ask me how I am feeling?
A bit tearful, but in some ways relieved that it has been properly spelled out that this is IT.  Nobody can tell us how long it will take, but he is dying.  Deep breath.
How is FL feeling?
He has been asleep since we got home.  And that is the problem at the heart of the situation right now.  He is not really “present” any longer.  If I was his daughter and not his wife, perhaps I could cheerily deliver him to the nearest care facility, whether he wanted it or not, and carry on with my life.  But it’s not like that.  He is still my First Love.  We have history. He is The One.  So I have to knuckle down and do the best I can for him in his final days / weeks / months.  And he is still a proud man – he is having no truck with wheelchairs or walking sticks or elevated plastic toilet seats or being helped to wash.  He would just rather not.  Which is only fine up to a point.  Sometimes I have to just make the decision and follow it through, for both of our sakes.
This is a blog post that I believe needs to be written because there are other carers out there with as little idea as me of what it is actually means to care for their dying husband.  Nobody tells you.  The only information on “end stage myeloma” I can find from UK-based health websites just tries to tell me that everything will be alright:  there are support networks and people who care and they will take over and you will not have to worry. 
Um no… not exactly.
Let me tell you now:  it is pretty much like having a new born baby but in reverse:  no sleep unless the child sleeps, feeding, toileting, washing, and never leaving the infant unattended.   And however much you love that child, it is hard work and it is exhausting.  And unlike having a baby, which grows up and becomes more able to do things for itself, the more time goes on the less your husband will be able to do for himself.  Your life will be consumed by caring for the other person, with no possibility of a positive outcome.
The only possible end to this situation is The End.
And that is why I write this down.  And why I indulge myself in crafty pursuits.  And why I make lists of books I want to read and why I buy myself a new raincoat and wellies. 
I am shoring myself up against the incoming storm that WILL wipe away the life we have built together.
And if you don’t want to read about that, please just stay away from this little space of mine. 
It’s for the best. 
Thank you.
Roo