my story

Category: life

  • My Funeral

    Just some notes.

    I don’t want anything religious.  I don’t believe there is a God or god.  There is a divinity in all of us which arrives when we practice sitting quietly and let love in.  Not something I’ve done much of but I have experienced those moments.

    Music is easy, although difficult too.

    You can all come in to Kashmir from the album Page and Plant No Quarter – you might need to fade that early as its 12 mins long.  In the middle you can have Sweet Honey in the Rocks – Breaths and when you leave you can have Rock and Roll by Led Zeppelin and have a dance.

    I want to be dressed in old jeans and a t shirt and wool jumper if I’ve got one.  There’s a guy in wales makes wooden coffins from recycled wood or failing that, willow. As cheep as poss.  Cremation.

    I’m not attached to too much really even though I’ve got this far, I’ll not be there so it wont matter much to me.

    If I’ve left Sandra behind, please look after her.  She is very precious.

  • My Life

    Its February 2022 and I watched a Dragon’s den episode where someone was pitching an idea called Biscuit Tin.  It was a website which securely contained information about people lives and death wishes and even financial arrangements and other bits and pieces.

    It seemed a good idea, so there is a new Category called Biscuit Tin where I’ll put that kind of stuff.  It may be as long lived project as My manifesto, but hopefully will be more enduring than that.

    I plan to say bits about my life which will maybe make clear some of the decisions I have made, my funeral requests ( with links if appropriate) and maybe why I chose those things.

    Here is my starter for 10. I was born in Bradford St Lukes Hospital on 19th June 1955 and about 6:30 am. I was a wanted child and both my parents were very pleased with a boy. I was born with dislocated hips and talipes which is feet turned almost inwards and under. Both due to being large in the womb. I wore wishbone splint well until after my Christening for my hips and had operations on my feet. I am not aware of any lasting effects of either defect, except that my toes are not very mobile and I can’t spread them like many people. Sometimes at night this feels quite claustrophobic.

    I don’t remember anything about living in Bradford. We moved when I was 3 after my sister arrived.

    That will do for my first entry! More to follow.

  • Kidneys in January 2019

    Kidneys in January 2019

    Its happened.  The long awaited drop below 15% has arrived this month when I find my kidney function is 14%.

    For a long time the magic number was 20% and I broke that barrier quite some time ago.  In fact at the time I smashed the 20% mark dialysis was expected within a year.  Since then and as a result of several convesations with different consultants I have found that dialysis may well not happen until I am below 10% or more like 8%.  The 15% mark is now about transplant.  I have been offered a kidney by my son, Anthony, who insists I have it, I dont think I’ll accept.  He has his life in front of him and may need a spare for better reasons than me.  His own children maybe.  

    So 15% needs to be broken 3 times in a row but then I’ll go on the transplant list.  Apparently there is an approx 18 month wait and some more tests, an operation, and a barrage of anti rejection drugs and I may get some life back.  In the meantime I am left with my symptoms which are itching and tiredness.  The tiredness has been markedly worse the last few months and is obviously explained by the drop.

    There may be reasons for 15%.  Firstly I generally have a lower result in January.  This recovers at my next text usually in May.  (So maybe 15 or 16 this year).  Secondly this result comes with a raised calcium level.  I have had other levels raised in the past – potassium being one, which I have managed with diet.  The elevated calcium could me modified by reducing one of the medications I take to supplement the activity of my parathyroid gland, which on reduced instruction from my reduced kidneys produces less calcium?  If I have the dose this may force my parathyroid to work harder and produce a more normal amount of calcium.  You can tell I dont quite understand that too well but something there is true!! In conclusion though reduced calcium (more activive parathyroid) plus seasonal bounceback may result in increased kidney function.  I have a retest in 3 weeks. so we’ll know more then. 

    Emotionally this has been tough.  I have rallied before. Done a lot of work around acceptance.  Thought about choices.  Thought about the previous paragraph stuff etc. but I cant help feeling I have done my best for 6+ years and now the final slope is in sight.  Who knows what next.  I have always thought my condition will ‘get me’ and I cant stave it off indefinitely but it was starting to feel like I was winning.  Maybe not.  Hey ho!

  • Kidney function

    Kidney function

    The decline in my kidney function has been tracked by blood tests since I was diagnosed in 2003.  At that time I had 75% of my kidneys left.  This was below normal for a man of my age.  Over the period between then and 2012 there was more or less a straight line decline towards 25%

    kidney functionThats just short of 6% per year.  The treatment was to keep my blood pressure low so it didn’t force too much IGA through my kidneys.  This was managed at Bradford first but their system was poor as they often didn’t get my blood results in time or were working on results 3 months old.  The blood pressure management was not rigorous.  2% drop per visit didn’t seem a big deal.

    More recently I have been managed by Calderdale via Leeds.  Blood tests were done just before each consultation and responses rapid.  My kidney function got to 25% and I stopped working at the end of June 2012.  I started the 5:2 diet in October of that year and also regular acupuncture.  My kidney function stabilised at around 20% (average of 19.6 over the last 12 results).

    I was originally scheduled to start dyalisis in October 2012, so I have nearly bought 4 years in time so far.

     

  • Councillor Lupson

    Councillor Lupson

    Back a while ago, I started writing my own manifesto. I didn’t get far!  Got stuck with God.  May come back to it in the future. I was getting fed up with hearing bad news politically and rather than continue to get upset and with nowhere for my anger to go, I decided I’d better do something.  I did get to voteforpolicies.org and discovered the Green Party was for me.  Plus it dint cost very much to join and Sandra joined too.  Found out about meetings, went to a couple and they needed someone to stand for the local elections in Elland.  So because that’s where I live, I decided to give it a go!  A few frustrating meetings later and 2000 leaflets, the election came and 364 people voted for me.  Thank you.

    Here is the leaflet me and some very good friends delivered round Elland.Elland outside

    My 364 votes were 7% of the vote on the day and were 10% down on the local election result last year but 66% up on the vote at the last general election in 2010.  Which is nice!

    The count was an interesting experience.  We could scrutinise the counters!  Scrutinise means look very carefully and we could sit opposite them and were encouraged to point out mistakes – we were so close you could smell the ballot papers!  The Elland station seemed well organised compared to other stations for other wards and our result was second out in about 2 hours.

    The Greens did pretty well overall, but didn’t win any seats.  Boo.

  • Cataclysmic events

    Cataclysmic events

    There has been a series of events which have suddenly produced a dramatic change in our lives.

    April 16th we went to our favourite campsite in Silverdale.  I expressed my anxiety at driving Oakley, and how this made it difficult to enjoy setting off.  The driving was always hard work and I was always worried about breakdowns accidents etc. On out way there; on the M6 near Lancaster I swear a lorry missed our back end by a couple of feet, because he didn’t realise quite how slow we were.  We were doing 35 but we could have been matchwood.  We arrived in Silverdale and had trouble getting to park where we usually like to be and ended up somewhere else with special permission to park sideways so we could get the view.  They wanted us to line up with all the other vans and caravans which meant we would be looking at the luton.

    Whilst we were there we had an awkward interaction with the stewardess who should have known who we were because of the conversations we had had in parking, and who challenged whether we were campers or not, and she couldn’t be too careful because of gypsies.  Did she think we were gypsies, what did she think?  What did other people think?.  We dont normally care, but this got to us.

    Whilst there we also questioned whether Oakley met our needs.  Sandra needs a toilet.  We explored how we could adapt Oakers to accommodate.  It would nt be easy, but the conversation led to us deciding it was time to sell.  We agreed to sleep on it but the next day we felt the same.  So we had a look round some of the campers we could see from our window.  An Autosleeper and a Talbot.  We learned alot!

    We got home of Friday (the Good one) and talked about what we would like.  I have long wanted a Hymer and one was for sale in Hipperholme.  Saturday we went to look at that and a few others.  The Hymer was outstanding for me but LHD, smelt a bit and was a bit pricey.  Monday we looked at another in Denholme and despite it being very similar to the Hipperholme one, Sandra loved it and we put a deposit on!!!

    So selling Oakley – we composed an ad and placed it on Classic cars site for £15,000, then put it on e-bay for 9,995 with a buy now of 15k.  We had an offer of 7k unseen, but when she saw it she was back-pedaling and we didnt like her anyway, not her 3 year old. Other than that the auction came and went.  The last few seconds were very stressful, very very stressful, but nothing happened.  In the meantime we emailed a load of Glamping places to see if they might be interested and had 2 responses of sorts.  Second aution was 5,995 with buy it now at 7995.  We had 4 people interested in viewing plus one offer of 4k and the 7k woman we didnt like offered 5.2k despite having said she wasnt interested, by taxt before we relisted.  We told her to bit.  Another request to view came from someone form the classic cars site who wanted us to hold it for her.  We encouraged her to bid and she did, with 14 seconds to go.  We had both talked to her on the phone before and liked her and she was saying all the right things.  She paid her deposit and we arranged collection.  We met Lizzie on Saturday, gave her a thorough tour and instructions and did the deal.  Oakley has gone to a good home and it was an incredible wrench to see him being driven off by someone else.  I realised I had never seen anyone drive him anywhere.  Very sad, but a good decision, leaving me wondering how such a major decision could have been made an executed in such a short time – 3 weeks and one day.

    We havent got the Hymer yet … thats another chapter!