Tuesday, 10 January 2012

2012 10th January - Planning Is Good For My Health

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.


Alternative cancer treatment said...

Good luck on your plans and I hope that you'll succeed on this. God will help you. I am grateful to part of your blog. Keep safe.

Unknown said...

I read this as if I were listening to you talk, and as sad as the content is, it made me smile


ps, okokok, am making a will... x

Fiona said...

Hi Lisa
I've been a 'follower' of your blog for over a year now. Sorry I barely ever leave a comment. You write so well I feel a bit inadequate!

Anyway after my diagnosis of HCC in 2010 i started funeral planning. I've been advised mine is an aggressive cancer and I'm someone who likes to be prepared. You know the type, putting undies and t-shirts to one side weeks before packing a holiday suitcase and refusing to wear them!
(I made a will years ago, and update it now and then, so that box is ticked).
I've chosen some music, and left a list for my husband of people who can contact other people etc etc re who is to be told. I'd like everyone to bring a tangible 'memory' of me:- it could be flowers, or a picture or a card or something written down, or something they have made. I'd like them to leave these 'memories' behind for my son to make a Memory Box. I'd like him to be able, in the future, to look at them and think 'my Mum meant xyz to this person'.
But in my job caring for the elderly I go to funerals at our local crematorium. It's an awful awful, depressing, Dickensian place. So where to have the 'get together'?
And I dont want a 'vicar' or other religious person taking a service for a person they dont know.
Can you give me details of how you find a 'celebrant' like the person you have found, and how you find a non-religious place to hold a service.

Loopy said...

I don't believe in God, but if praying helps you all well and good. I've lived a good life and made my own all on my own mostly. I don't need luck realising my plans as my wishes are known and will be carried out, that's the whole point of this post. If you pray it's not helping me but I respect your beliefs, I'd rather not know to be honest as I find it offensive for my beliefs to be dismissed. Sorry for the brutal honesty but that's how I feel.

Loopy said...

Unknown, if you are who i'm sure you are, I wrote it as if I was talking to you.

Loopy said...

Fiona of course I'll help you, I'll get some links to putilities in it. I am making memory boxes myself that they can add to. I'm sorry you have the aggressive type, but you still have time and planning, getting it all sorted will only give you more reason and inner strength to defend your body. Mind over matter can do great things, bar the obvious unless you believe the miracle cures. Just give me a day or two, will be easier at home as only have phone and 7"tablet - laptop much easier!

Tony Songhurst said...

Hi Lisa,

I must say I agree that there is a great positivity almost excitement at all the planning and actions you are taking for your funeral. I also believe that everyone should do this and write a will as most may not have the time we have.

Love the fact you are on an even keel at the moment and can even laugh at things. There is no reason why death/ dying has to be all bleak and sombre..if you can find peace in death even though there are beautiful and deeply loved people to be left behind then it does make it easier on yourself and those around you. There is an old Chinese ying and yang type philosophy that says that life as well as death should be calm and balanced. I am looking hard at this 'balance'.

If you feel up to it please send me a message with the tips and experiences you mentioned. I understand also if you are busy with planning etc, just if yiu have the time.

Much Love

T x

Tony Songhurst said...

The experiences you noted that you could share related to RT and Stoma...cheers T x

Anonymous said...

Just a passing stranger sending you love and ok I'm going to make my will too! x

Sue said...

I agree that everyone should make a will and think about what sort of funeral service they want, even those who are 'healthy'. Mum died so suddenly and so unexpectedly, 4 hours after going into hospital with what we thought was a virus, and while she had a will she'd obviously never thought about her funeral.

I don't do religion, so wasn't going to start looking through hymns etc, but I did find a notepad where she'd written down the order of service for my great aunts funeral that she'd had to organise. I figured that would do so we used it.

The one thing I did know was what I wanted her to wear. That was the easiest decision.

I'm glad that they've got your pain under control and that you can get home, though the hospice sounds a lovely place. My friend used their local children's hospice when his daughter was having chemo and I know it saved their sanity.

The one nice touch our undertakers did was to leave wee cards on the seats for people to fill in, who they were etc. I went through and wrote where they were from on the back. It was lovely to be able to look through them afterwards, the Queen could have been at the funeral and I wouldn't have noticed, so it was the cards that let me see who had come. Just a thought anyway.


Loopy said...

Glad you added that last comment Tony, wasn't sure what you meant specifically. May need to give me a day or so if I go home tomorrow.

Loopy said...

Sorry to hear about your mum going so unexpectedly. It's probably the way for a large proportion of people.

Thanks for the card idea, there won't be anyone who knows who everyone is, but me. Obviously having FD just driving hearse to park, no seating outside but refreshments will be inside at nearby pub so could have some there for people to fill in and maybe mention at park for those who want to leave after service.

Anonymous said...

I came accross your blog by accident. Just wanted to say thank you for sharing your life. It sure made me realize how much if a wimp I am for allowing divorce and financial problems depress me. I bet you only wish you had such few things to worry about. I am 50, lived long enough to raise my children and see grand children and still gave no major health issues. I should be happy as that is so much more than your life path. I admire you and thank you for helping me realize how much I have to be thankful for. At least you will die young and beautiful. Thank you again for sharing your life. Wishing you a true miracle from anywhere it can come from! I know your not a religious person and want to show respect for your belief. Do you believe in any sort of after life? I never believed until about 3 years ago when I could not find any other way to explaine somethings which occured in my life. Again I have respect for your belief so will not try to push my belief off on you, just wishing the very best for you. You have great courage as this is freaking so unfair to young woman with teenage children. Wished life was more fair.

Loopy said...

Thank you for the lovely comments. I went through divorce and financial worries, lived on a credit card for the first year but always felt things have a way of sorting themselves out and they do if you don't let them take over. I must say I couldnt care less about dying young, I've had more pain and disability than a lot of older people. who cares what i look like when my grandchildren will never have me babysit and spoiled? My face is swollen and round with steroids, I' m bald. Yes I look a bit better with make up and my wig, beautiful, no.

My beliefs do not extend to the afterlife and I dont believe there is any great plan, things happen as a consequence ofprevious events and existing circumstances. I believe all the atoms I'm constructed of will go back into the universe, that there is a finite quantity of every element and that it manifests itself in whichever way it wants, whether it''s a person or a tree or animal, a new celestial body we never know about. A friend put me onto Deepak Chopra and Karl Sagan and their beliefs are muc more palatable than any others. I do yoga, did, for my body and mind, meditation for 20 years and I think they helped me deal with all the pain and tragedy. I'm too much of a mathemetician and analyst to be able to swallow a whole book of stories as the truth. Too practical to think something happened because "God" made it so, rather than from my own or others' actions. That said, much like placebos, if you take comfort and feel safer, happier, supported and with a group of like minded people who feel the same that can only be a good thing.

Perhaps my children wouldn't have turned out as remarkably as they have if I'd stayed well, I might have wasted my time and attention on a man instead of them. I am so grateful for these extra 5 yearsa of appreciating more what I have, that I had them young, I can't feel it's too unfair to me, just to them.

I'm glad to have helped you see things differently, people really do waste so much time and negative energy on small stuff, yet without health it's all pointless.

Unknown said...

I didnt mean to be elusive, dont know why it doesnt come up with my name (pah! technology!)

The post didnt make me cry at work, but your comment did!

(if I was the one you thought I am!)

Loopy said...

Oh no I found out you aren't who I thought you are and now have no idea! Initials would help!

David Haas said...

I have a question about your blog. Please email me!

Loopy said...

Thank you and good :D

Loopy said...

Because you need to select which identity below the comment box, if you're not signed in you are in fact a non : p

Loopy said...

Sorry David, I only have access via my phone and android tablet so can't see how to mail you, please could you mail me? Another blogger has so I know it's possible.

Loopy said...

David, sent you a tweet

Anonymous said...

I was amazed you did not feel this was too unfair to you. Maybe after five years living with cancer you come to terms. I understand what you mean about not believing stories in a book. I also always looked at the bible in this way. As odd as it sounds I believe there is some sort of god, however I don't know if he has anything to do with the bible. Maybe so and maybe not. I Always questioned when you heard there is no way into heaven accept through me as being quoted in the bible. I find it very difficult to believe a loving god would say such a thing. Seems to me it would be more like be good to each other, be a honest good person and the gates to heaven are open to you. Not worship me or keep out? I do fully agree the Christian religion has good positive morals so I am all for it and glad people find confort in religion. I believe in an afterlife And a god, but I don't even begin to think I understand it. In many ways I think we live on though our children or relatives. Seems you can look at some young peolple in your family and they seen just like someone down the family line. I sometimes wonder if genes was not an invention so we do really truly never die. My son is so much like my dad and yet my dad died 10 years before he was born. Sounds luke you truly raised some wonderful children. When my children were teens, I thought they dis not listen to me, but as they grew up I realized they had been listening. I never knew any of my grandparents as my dad was 50 when I was born and all grand parents passed before I was born. As I grew into a young woman I really wished I had known my grand parents, especially a grandmother. When I get a chance to visit with people who knew her, I just get such joy of hearing just simple things about her. Like she made homemade biscuits and oatmeal every morning for her 14 children, that as a old woman when asked if she belived in reincornation what she would want to come back as she replied "an old maid". In those years a woman whom never married or had children was called an old maid. I guess after raising 14 kids it didn't look so bad the next time around. Your grand children will surely see you as an remarkable lady and may also appreciate a lletter in your own words to pass to them one day after they are grown.. Thank you for your kind encouraging words concerning divorce and financial issues, just happening upon your blog made me stop feeling sorry fir myself as my problems so petty. What location are you in? I am in Texas. I am new to blogs and only get on line with my phone so hard to see much! Best wishes to you and again thank you. Violet

Loopy said...

No idea what putilities are but I meant links. I have some for you and a manchester one as I believe thats where you are from something I read on your blog. One of my BB gang is there so she may find it useful, the geest i'm sure many will. I'll put them in a post but feel free to ask questions via comments or mail through blogger.

Loopy said...

There is a great book by a chinese woman, whose first book was a sad autobiography of an unwanted abused child. My boyfriend at the time said elements of what she said on a tv interview reminded him of things I'd told him of my own child hood and warily bought it for me. It put my own problems into perspective more and helped me let some things ago, though I continued to have counseling and times of medication.

Her second book has chinese proverbs, explanation of how chinese treat food as medicine, in fact because of low breast cancer rates and the volume of soya they eat that may be when I switched to soya milk, definitely my very early 30 s. I think her name is Adeline Yen Mah, the book may interest you. Will try to find details if you can't from my clues!