Saturday, 24 December 2011

2011 24th Dec - Poor You, Stuck in a Hospice for Christmas

I've had a lot going on lately since my last post so I'll start with a diary list to catch up.
9th Dec - results of scan, Maurice rightly persuaded me that he should take the day off to accompany me given the time since my last scan, I may need a shoulder.
Having suffered increasing hip, back and leg pain plus 6 days of crippling head pains in the back I knew I had to mention them.
Scans obviously showed marked growth, my liver now looks half taken over, but most interestingly and almost a relief was the final reason for my 18 months of increasing pain ruining my life - close to my initial prediction a tumour on my spine, though higher than I'd imagined.  I mentioned the head pains, headache doesn't cover it.  Unprecedentedly I was sent for an immediate scan and back to clinic with results whilst sending Maurice off to get my new script for a steroid more suitable.
Back with Dr Tom, quick glance at the scan showed a single deposit where the pain stems.  He made a note of my new nice Mac nurse's name and said he'd call to let her know the lastest as she was already trying to get me into hospice for pain management.
I googled later and "thankfully" it's not the bit that changes moods or personality, just stability and movement.  So radiation to both new tumours asap and obviously this makes my prospects worse but the pain relief can be directed properly at last, from the first radation I know how fast it shrinks and reduces pain so it is a positive thing.
This is the reason I have never wanted a full scan, I knew it would go to my brain, like Peter and Bec, take away my freedom driving Izzy.  Losing my car is the biggest loss with this news, how glad am I that Peter buying his "end of life Porsche" prompted me to think "shit if it comes back I'll follow that path, bring on the convertible quick lets live while I can.
It was a terribly upsetting, long afternoon, lots of walking and waiting. I wouldn't have managed alone at all and it was lovely to have my friend there.  We got back and had a drive through to take back and then Maurice fetched me a few ready meals, then picked Karys up from the bus which she was very pleased about.  Neither of us had thought it would be such an emotional day
I told Karys, we were teary and she asked what they can do about it - radiation - so then we got on with watching the awful Black Swan.  We were really disappointed, expecting something really dark or chilling.  Maybe being hardened goth types we need a little more (or more suggestion than obvious in your face gore).
10th Dec - Time to have a chat with my son.  He's been so great, like Karys but he doesn't have the teary moments, even when the Dr told us this could be my last Christmas he just held my hand while I cried but stayed calm and strong.  He says he's fine, doesn't think it's anyone's business to talk to them but that he will talk to his sister if he needs to.  I'm so scared that he'll crumble when I'm gone or a while after that I'm trying to put in place some kind of net for him that he doesn't fall through and go wild, off the rails, angry at the world.  I have no reason to think this might happen, but how will I know?  Karys has her long term boyfriend, Phoenix is a boy with an unemotional father.  I'd hate my early death to ruin either of theire lives. 
When I told him how amazed and pleased I am the way they are handling things, being with me, carrying on just being so positive and supportive, his response was "that's because you raised us".
I cannot tell you after over a decade of abuse about abandoning my kids (shared care, I got weekends and 2 evenings), being no kind of a mother etc, to hear those words in that context finally wiped away all the tears caused by the haters, the ones who didn't understand that me working, while their unemployed dad cared for them was actually better than two unemployed parents on benefits spiralling down into worse depression was the right move for THEM.  Every decision, most of which hurt me more than anyone, has been for their sake to make sure they had the most stable, consistent upbringing.  I do not believe in fathers having crumbs of alternate weekends.  We made those children on purpose, we both love them, they need us both.  But still, recognition that my influence has rubbed off on them and helped them cope with all of this is a gift for him to see it that way, let alone tell me.
12th Dec - Monday Melanie Mac nurse visit.  Aware of my news, we had a short chat about that, a few tears - again about my final loss of independence and being more alone than ever.
Then the news that there is a space in the Lincoln St Barnabas hospice tomorrow.  Before she could finish the "I'd grab it if I were you regardless of it being so close to Christmas..." I was mentally packing. At this point I thought I'd be sorted and back for the big day.
13th Dec - Having ignored Lil the nurse at Beating Bowel Cancer about asking for Marie
Curie to stay to help pack bag etc I was feeling shit in the morning.  I crawled in pain, slid bags down stairs, myself downstairs, puffing and panting.  Idiot.  The transport (man with a car) arrived and after reclining the passenger seat all the way we set off.  I tried to sip a Fresubin to make up for lack of energy on the way.
The second I was in a wheelchair I was in agony, by the time I was crying in pain on the bed I felt sick and with nurses and a Dr trying to get me comfortable I threw up a few times before finally getting to my usual "best".
The next few days were spent titrating my new drug, methodone.  Gone are the crappy patches and breakthrough crack lollies, which no longer worked anyway.  I went to the hospital to have another radiation tattoo on my belly and my face mask made for the brain attack (whole brain).  Consensus finally is that the dose is quite low so I may actually keep my hair. I asked Phoenix to bring my clippers in just in case.
Saturday morning I started hurling again every couple of hours, made more miserable knowing my friend Katie was trekking from Manchester via my house to pick up Karys.  I wanted to be looking better, able to enjoy my visit, instead I just slept in the dark until they arrived.  I still improved while they were here so they could see I'm still in the right place, pain management just takes time.
18th Dec - Sunday Katie swung by on her way home and Maurice and Sue came too.  By this time I'd had a methadone syringe driver fitted so I was feeling and looking much better.
Radiation started and ended this week, Monday to Friday.  First 2 days a wheelchair and taxi were booked - first taxi I couldn't get in without tilting my head!  I tell ya, I'd treat you to some comical insights but I was in so much pain in the chair (later changed to stretcher ASAP) I couldn't draw on my own humour.  We ordered a Fiat for home.
Having been sick in the morning I was also sick after dinner, but I'd felt queasy in the taxi.
I don't like random sickness :o(
Ambulancemen got me there and back in 45 minutes - Monday was 2 hours, Tuesday 1.5 hours.  In a chair, in pain - better Tuesday because I had injected morphine before going - again the importance of being in a hospice, that doesn't happen that fast in a hospital, things take days and they pussyfoot about.
Maurice has been a couple of times this week breaking it up.  The radiation tiredness oddly kicked in from day 2, increasing of course. Insides definitely upset but apart from that feeling better already.
The hospice food is awesome ( 3 courses), nurses as you would expect, special.  Also they have upstairs accommodation where the children can stay.  They are coming on the train today (I hope) so we'll have our Christmas in a lounge (not my room) which has a tv, fireplace, table.  It will be as close to home as they can make it with the incredible advantage of on hand pain relief I wouldn't have at home, instant help should I have any problems.  The children don't need to do anything for me or worry about me.  It's ideal.  No washing up.
Maurice has offered himself as chauffeur, knowing I have nobody else to ask, by the fact that I'm not in contact with anyone else regularly so feel unable to call in a favour after months of silence.  As such on Boxing Day he's driving up from Watford where he's visiting to come to Lincoln to take my babies home.
"Stuck in here for Christmas?" Yeah, right.......

6 comments:

suze said...

Babe .... words fail me.

I am only writing anything so you know your words and being read and you are in my thoughts . ...

Well there are lots of other words buzzing about but I cannot order them into anything that would be faintly useful to you .

I am sorry you are in such pain.

I am glad you are finding positive things to report about your kids as you all face this latest horror.

Kindest thoughts, my dear, Suze xxxxx

Carole said...

Thinking about you Lisa, constantly.

Hope Christmas lunch with the kids goes well and hope you have less pain as soon as possible.

Hugs - very gentle ones.

xxXxx

Tony Songhurst said...

Lisa,

I know we have been messaging but also wanted to add my note here too...happy that you are in the right place and hoping today went well and you are now resting contented after a full day.

Much Love

T xxxx

Unknown said...

BB, I cant wait to visit you - St B's sounds pretty much what is needed. I do so wish I lived nearer to help with the practical bits. I shall be there soon though (but no speeding this time...)
x

Loopy said...

It is hard to make such news sound anything but gloomy yet that's not how I feel about it. Everything is expected it's all about timing. My general day to day appreciation of life and all I have remains. The pain was the one thing making me wish the end would be sooner but now it's controlled I have hope back.

I do wish my other 3 real friends were nearer yet the hole would surely be more obvious if we were able to spend more time together day to day? Yet I never felt that when we lost Bec. Didn't matter she was miles away in Brizzle.

The main thing is I'm still me. I'm not done yet.

Debby said...

I am glad that the pain is back under control. You, being you, will make the most of this time with your children. You will give them moments that will last a lifetime.