The last few days I've started feeling myself again in my head, myself. The virus is just the odd productive cough, cough regular, production less regular. I've been up to regular texts and emails which before were too much over and above the necessary.
Mostly I've been emailing Hayley my BFF over in France or chatting on the tablet which we used to do more regularly until I started to slide a bit. I want to arrange and pay for as much of my funeral as possible before the event and obviously this means I'll get what I want and have the chance to ask family and friends what they want too. How often to people get the opportunity to do that? The thing is everyone can and probably should before it's necessary, keep a copy of all your wishes with your will - you mean you haven't made a will either? Best get on that, why put your loved ones through the pain of probate without a will, dragging it out if family contest or squabble? If separated your spouse might still get the lot - worth thinking about?
Lecture over. Nicola my chosen celebrant came to see me today for the first time, though we have emailed. She's lovely as she looks in her photo and my age. Not only has she done lots of services at Ketton Park but she had similar ideas and suggestions to me. I have a to do list and a few things to think about plus questions for others.
Up until her visit I've been making lists and questions to ask and obviously things I want. The one thing I've never even given a thought is what I want to wear - well probably heels...... Again how would you make that decision for a loved one if you'd never had the conversation. I know I want my favourite Monsoon underwear but I've got no further on that one since I've not seen my wardrobe for a month I have no iddea what I have! All this list making and planning has given me a bit of a buzz, I have a purpose, things to do. The nurses have all noticed. I've also had a stream of visitors and long chats with nurses, healthcare support and the student which have left me with a good feeling.
Sunday Maurice brought Karys and Phoenix which is always good, then Becky came and painted my nails - also remember us being horrified at the footage of that lucky girl who survived the bungee break above crocodiles! Sheesh. Meanwhile Sue (Moz's wife, my ex boss) was washing, rewashing musty things my lovely son hadn't realised you have to dry quick or they go mouldy. She hoovered, changed my bed ready for going home and put dry laundry away and generally tidied up. Remember there has been a 17 year old boy having the run of the place at weekends. She even did some ironing and said it was almost enjoyable as I have a steam generator.
Monday my mum came with my older sister Deborah. We only lived together for a year, then I was told my dad was my stepdad and I had an older sister at the age of 7. From then I went on to meet them "again" and started spending a week there in the summer holidays each year but although we get on really well when together we don't have that close relationship having lived 80 miles apart. Last time I saw her a year ago I'd had Lisa visit so put my wig and I'm sure make up and didn't look at all ill. The pain wasn't that bad back then by comparison. Last time I saw mum 2 months ago I had a proper short haircut was in pain but didn't have a steroid moonface. I had my voice, mostl likely gone due to tumours. I wasn't bald with a few 6mm patches, small patches, mostly bald. They said it wasn't such a big shock but I could see it in their eyes. I'm sure I wasn't imagining it and it hurt.
What didn't hurt is the fact that it was the first time in four and a half years I've seen my mother without her husband. After he wrote a terribley inaccurate account of my illness and treatment he knows nothing about without my permission I'm afraid my patience and tolerance of his company has come to an end. He's still a stranger to me and I don't see why at the end of my life, the way I look and feel I should spend a moment of it putting up with the company of someone I don't want to be with. My mum was my mum again, not a thing to be fawned over. I have no intention of bringing up the past now, it's about people having good memories. I don't need the heartache or the stress, my lungs can't take crying, nor can my swollen liver. So no more tears!
Sadly laughing was quite painful on Sunday but I couldn't not. Karys returned from the visitor toilet with her usually huge eyes like saucers horrified at her experience:
"I just walked in the loo and a woman was hovering over the toilet, door wide open pissing EVERYWHERE. Her excuse was she doesn't like doors! It really stank of fags and then two more people queued behind me so I had to clean it up anyway or they'd think it was me. She was middle aged (on pointing out I'm middle aged she increased her guess to 50) as well"
We were still laughing when Kate, one of the nurses came to check all ok so we told her and she went off with a very vague description to investigate the matter.
I've come off the syringe driver onto liquid methadone today so there's a couple of days to see how that goes, most likely means I need to be observed for a few days as swapping type of drug can be hit and miss to get the dose right. Though the care package has been agreed they also need to make sure funding is in place so that the carers turn up. There's no way I'll be allowed out of here until every little thing is as it needs to be and I'm happy to stay here longer to achieve that.
I've requested that when I get to the point that I can't manage at home even with care, that I go to the four bed Tulip Hospice Suite in Spalding's new Johnson Hospital building. The kids can come any and every day, stay over, prepare food in the kitchen area etc.. There is of course the chance there is no bed, in which case I'll come back here. St Barnabas will continue to advise my GP on my pain management and care so I'm under the hospice for life now. If my drugs need changing they'll bring me here so I'll always get the best care I've had to date. My last resort is of course Pilgrim. Please don't let happen universe!
Ambulance control will be advised of these wishes and my preference not to be resuscitated (hardest question I ever had to think about and make a decision on). So if I need to call an ambulance they won't head straight for that awful place that now has more bad memories than alright ones (time spent in Bostonian was more pleasant).
Anyway, morbid as bits of this post are I still feel very positive today. I have plenty more things to arrange and sort out and look forward to getting on with them and hopefully making and selling more jewellery. I might take this opportunity to ask, as I don't know who is reading, if you would like to come to my service maybe you could let me know so I can keep your contact details with my will and ensure you are informmed. I'm aiming this at people I've not seen for a long time but used to be close to or just those I've met odd times but it's not the sort of thing you want to ask. This isn't a plea for guests! It's because I know sometimes when I've heard someone from my past has died it affects me in a totally unexpected way and I would have liked to have said goodbye. Saying goodbye is important and I'm very grateful I've been given all this time to do it with those few I'm close to.
Have a think about making a will won't you, and how you'd like people to see you off. Mine will only involve my daughter wearing black since that's what she wears for example.