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This Is The Week That Is

I suppose the title is not stricly true if you happen to be a pedant since given that Sunday is /monday is the start of a new week I’m actually covering parts of two weeks. I wasn’t sure that ‘TWTWTW with TITWTI’ wouldn’t sound like some demented owl calling instead of a title.

I left the story on Friday of last week with the hope that Julia would regain the will to go out or at least to give the ‘girls’ an outing from their cage. ( For new readers, I make the mistake of referring to my daughter and two nieces as the girls as well as our selection of pet rats. I leave it to you to decide who’s been caged).

The driver in place the pain must have been reduced but overall was still evident. So, on Saturday the dosage in the driver was increased, which required a doctor’s authorisation via the nurses. When  it had to be increased again, and because of the snow passage to our home was even more difficult, the MacMillan nurse decided to try for a place at the hospice immediately. That wasn’t possible so a bed at the hospital where Ju”s treatment started was found. Neither my daughter nor I was keen on the idea because they’re large wards, patients have to go through the outpatients dept. before being sent to a ward and there’s no guarantee of visiting outside the stated times. But, any port in a storm as the saying goes. It was thus arranged by having an on call doctor come and assess Julia and sign an authorisation for hospitalisation. It was actually strange to see the doctor since both Julia and I had met him before. He has a surgery in a local town, obviously covers as an on call doctor and also has a job with ATOS, the firm employed by the government to assess people for Disability Living Allowance claims- and refuse them . We remembered him well from his assessment of my claim a couple of years back. He had me walk four feet from chair to door before deciding I could walk OK. He saved himself the bother of asking me a few questions by just supplying his own answers for them and talking to Julia said ” Please My Lady, let him answer the quession I ask” despite being told I wasn’t able to. But this was all done in the most charming manner. On arrival this time to assess Julia he acted as though we’d not met each other before and referred to me as ‘Young Man’ (eyesight not bad then) and said to Julia ” Oh my Lady, you’re far too young for this, far too young” ( and who could disagree with that).

A couple of hours later the ambulance battled it’s way through to collect Ju. An ecstatic Macmillan Nurse rang to say we could have a place in the hospice on Monday but they don’t do weekend admissions. The alternatives were a different hospice much further away or a bed at the local cottage hospital until a transfer could be arranged on Monday.  Yvonne and I gave the problem our undivided attention for all of two seconds and decided on the local hospital. We told the ambulance men who were a little bemused as that wasn’t on their  destination sheet, but it meant an earlier finish so they could cope.

Julia was transported by wheelchair to the ambulance which was a very painful journey but inescapable because of the state of the ground cover of snow and ice. I travelled with her while Yvonne followed in the car with Ugo. It was a very short journey and soon we were on the ward. Though this a main ward it consisted of only four beds. And though privacy was somewhat impacted everyone had automatically started speaking in whispers the minute we entered. Amazingly though, the staff placed no restriction on visiting times and even showed us to a family room where there was a bed enabling some to stay over. It was also a place where we could bring food to so that there was no need to leave the hospital to eat. Ju’s morphine doses were increased again so we expeccted all to be well.

There was no doctor at the hospital so when Julia felt pain the nursing staff had to phone one to get permission to increase the morphine 20mg at a time. This wasn’t achieving much. So, after a Sunday where we brought and ate enough food to feed the four thousand and left the family room smelling like we’d had a Turkish sauna in there instead of Just Yvonne and Ugo sleeping it was great when Monday and the time fo transfer came. I travelled in the ambulance with Julia again while Yvonne and Ugo went by car and Karen did the same.

The hospice (St. Kentigern’s) is fantastic. Though Ju is in a much smaller room than last time which doesn’t have it’s own bathroom, the kindness here is amazing. No restriction on visitors ( I mean number of rather than they can form their own Sumo wrestling team to perform there) and they’ve allowed Yvonne and I to stay over so Ju has our attention 24/7 ( who shouted ‘Poor Soul’ then?) as well as constant care from the staff here which includes a fantastic Doctor who is the most empathetic I’ve ever met and brilliant staff for whom nothing is too much trouble. There’s also the possibilty to order meals so you don’t have to leave if you’d prefer . All that being said, the dosage of morphine is now strong enough to kill the pain and discomfort but Ju is hardly lucid at all now. It’s Thursday at 7.15 am here and Yvonne or I have spent the night sitting with Ju  and giving her occasional drinks to keep her hydrated. The tumour has now caused a blockage so she’s unable to eat at all. Any attempt leads to sickness so the liquid is important.

We spend time playing Ju’s favourite music, holding hands (hers) and stuffing biscuits and cakes down our gullets while Ju sleeps. We know this is the end, just not when it will arrive. Each of us hopes to be here when it does so we can say goodbye properly and not allow her to pass feeling alone. There have been important visitors here that have made Ju’s life better by their presence. Lis, one of those people who enrich the lives of all about them came as soon as the snow conditions allowed. Despite her lack of awareness Ju smiled from ear to ear. Little Mike came yesterday when he had a chance and I’m sure his cheeky banter lit sparks of recognition for her. Both Karen and Joanne (The Nieces) we here last night though Karen has been here all day every day suffering my jokes. Our nephew Lee and his partner Jen visited on Tuesday evening and Ju recognised them I’m sure. Today we know Karen will arrive early and be carrying bacon sandwiches for Yvonne and I and the three of us will sit and reminisce throughout the day trying to include Ju in the conversation where possible. We have no idea how long we’ll be sitting here for.

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That Was the Week that Was

Normally I’d post on a Wednesday to let you know how the horse riding has gone, and how the smile goes from horse to Ju to me. This week hasn’t been like that.

On Tuesday night Ju started to feel some breakthrough pain. She’d taken her normal tablets  and then her emergency ones without getting any ease. By 11.00pm she was really hurting. There was no choice but to call the out of hours service and get the Marie Curie Nurses. Because of the stupidity of our system they had quite a distance to cover from another Shire and arrived at 12.15am. By 12.20 am she’d had an injection of morphine and I hoped she’d sleep. The nurses left about 1.00am and as Ju seemed to be resting I went to bed. By 2.00 am she was in obvious distress again and was now being sick as well,  so it was back on to the service. Ju hates being sick and is quite prepared to stop fighting when that happens. The first team were out on another job so they’d send our local team out. Local? So why send those from far away first time round? We had a phone call back saying they’d leave as soon as the’d spoken to a doctor about the dosage Ju was allowed. I was able to tell them the dosage and frequency so they set off.

By 2.30 am the second dose of morphine had been administered but we were worried about the sickness. The Marie Curie Nurses said they asked the doctor about that too and he was coming. He arrived and gave her an injection of something to get rid of the nausea. He was obviously a little annoyed he couldn’t get round the bed easily because of Ju’s crafting stuff and suggested I might like to clear it. I bit my tongue and said I’d see when someone could do it. I didn’t think gone 3.00 am was a good time to start and he did’t need access there and then.I was probably a little tired. Anyhoo, by 4.00am they’d all gone so I made myself a coffee and sat watching Ju for a while while she slept.

I decided to get my head down about 5.00 am. I managed to fall asleep until 7.50 am when it was time to get up and see to the girls. I gave them a chocolate drop each and then feeling very guilty walked round apologising that ‘Mummy’ wouldn’t be getting them out to play today. I’m sure there were some glares thrown at me so I passed them all a Shreddie with a little milk on. Time to turn the fish on, I’ll rephrase that in case you think I’m wearing my fishnet stockings, time to turn the lights on the fish tank. Then it’s my meds and a coffee. I took a cup of tea through to Ju and she was awake but sore and tired. Time to phone and cancel riding for today. She’s been invited on one on Sunday again so I reckon it’s too early to cancel that. Wednesday her normal meds seemed to hold her but she stayed in bed for the day holding court with one visitor after another and gossiping with Yvonne who’d come to look after her precious Mum.

Thursday. Ju seemed to have no overnight problems and we both got some rest. I took her tea through and suggested she might like to get up for a while so I could change her bedding. She sat in the lounge talking to the girls but didn’t take them out again. I was in and out answering emails or nipping to the shops for a paper and some lunch. It was late morning I saw her pick up the phone and she rand the doctors to ask for a visit. I was puzzled as she hadn’t complained, but she said the pain was back. He came but persuaded her to stick to the tablets for the day and if things hadn’t improved by 5.00pm to phone him again. That was kind, and she didn’t need to. She struggled a bit overnight but no nurses were called out.

Friday. For some reason I was up answering emails at 4.30 am today. I didn’t go through to the lounge until 8.00pm and was shocked to see at least 4 inches of snow on the ground. Where the heck did tht come from? A rhetorical question honestly. And it was still snowing. I gave the girls a chocolate drop or maybe gave one girl 4 chocolate drops since I couldn’t actually look them in the eye so guilty did I feel. Ju and I normally shop early on a Friday so they don’t get their playtime but they’ve missed so much this week. I took a cuppa through and Ju wasn’t looking well. I had my meds, got a coffee and cancelled the Sunday ride. Her MacMillan Nurse arrived and gave her a morphine injection with an anti nausea one. Fair play she did balance it out, one in each arm. Then she left for a while. I went to the shops for my Euro Lottery ticket which is going to make me filthy rich tonight- no, dammit, I can afford soap. There was no way I could do my shopping with the snow and with Ju ill. The paper says 36 hours of this weather with maybe 12″ of snow. Oh Joy !

Ju had some toast for lunch and another cup of tea, that’s all I could get her to try. Then the district nurses arrived. There are always two so I’m sure one comes to hold the handbags. In all honesty they’re great. They brought a driver to attach to Ju so she gets a continuous feed of morphine to kill the pain. Most of the afternoon it seems to have been working but I know when they come to change it tomorrow Ju or I will have to tell them the pain had broken through by this evening. So, currently I haven’t been shopping so haven’t been able to get to the bank. Even If I had cash there’s nothing to buy round here for dinner. We’ll be sharing the rat’s food for the weekend unless a friend can take me shopping tomorrow or I can find a taxi willing to take me to a cash machine first. Of course once I tell them I’ve won 80m on the lottery they’ll be keen to help won’t they? I’m hoping against hope that Ju will at least be able to get out of bed tomorrow even if she can’t go out.( and do my shopping for me). Maybe she can allow the girls half an hour out of their cage. But most of all I want her free of this pain and fighting again beside me.I HATE this Cancer.

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