Sunday, 22 November 2015

Slowly going down hill

It's Sunday 22nd November and I'm lying in bed dictating to my son Gareth who has kindly offered to act as scribe. It's been a good weekend, yesterday I had visits from Jason, Rachel, Naomi and Lorraine. Today my son Gareth has babysat me so that Ros could get to church and he could let the district nurse in to reload my syringe driver. This afternoon I had my brother in law John Miller together with my son Stuart and Steve Faulkner from church visit. Steve came to give me the sacrament which was appreciated. I am finding it increasingly difficult to be out of bed because the change of orientation sets the pain off badly sometimes so much so that I end up vomiting. It's not all doom and gloom I do manage to smile and laugh occasionally. Also we do make a bit of progress yesterday Jason converted an old cardboard box into a blanket cradle to stop the blankets from pressing on my toenails causing bruising. Also my daughter Lorraine brought me a big V shapped pillow which helps support me in a more comfortable position. The district nurses continue to do their very best to support me and help me be comfortable. I still managed to enjoy the programmes on the BBC iPlayer. I particularly enjoy nature programmes and documentaries. Sometimes just for a brief period I am able to forget all my challenges and immerse myself in the programme. I apologise if this has been a boring post but I'm sorry that how it is dying can be a boring process. I just count my blessings that I am not lying in a burnt out basement somewhere waiting for relief that isn't going to come.

Saturday, 7 November 2015

It is a real challenge! Sadly not a reel one!

Since coming out of the hospice things have been a bit challenging with  pain and bilious attacks  so much so they have fitted me with the syringe driver again.  This means I get two visits a day from the  district nurses, one to load the syringe and the other to check it is working OK before I go to sleep. Rosalind is a star, as I needed some Oxcynorm in tablet form, she phoned round several pharmacy still she found one at New Addington with a stock. Hurray, it's good to know you have it.

Whilst Ros was out the door bell rang and I managed to get downstairs. It was Seth from church and he had arranged to visit Saturday pm.  We were able to catch up with each other's news till Ros joined us.  Seth brought good news, he had changed his job

Because it is getting quite painful for me to type on the tablet keyboard with my right hand and my left hand shakes a bit I have been experimenting with the voice recognition function. This has led to some hysterical text.  I will try to include some next time.

Tuesday, 27 October 2015

Back at the Ranch but not riding horses!

Well my spell at the wonderful St Christophers Hospice had to come to an end! Fortunately I did not leave there in a coffin, Rosalind collected me in our car.  What was achieved at SCH whilst I was there?

  • I learnt how kind and caring and professional the staff at St Christopher's are and the wonderful resources they have.
  • They improved my pain control and taught me more on how to manage it. They progressed me from tablets to syringe driver and finally onto patches.
  • Eventually they got me eating most of the time without vomiting. And I learnt to avoid bending low after eating, to put slippers on, if I wanted to keep my stomach contents in my stomach!
  • They freed up my internal plumbing so my waste disposal system is working.
  • The physio showed me that a very gentle massage can be a pleasant experience and then she showed Rosalind how to do it.
I feel I made a lot of friends there and I was sad to leave them.  They had spoilt me rotten! They gave me 5-star treatment,  Well I ask you where else are you going to get at 3am for free, a top up dose of pain relief medicine followed by one of the following:-
  • A cup of Horlics with biscuits or
  • A glass of apples juice with biscuits or
  • A small tub of ice cream or
  • A slice of toast with butter and marmalade
Yes it was like being on cloud nine in heaven or the garden of Eden. 

After a bumpy drive home (I think the local government bodies are letting the roads deteriorate so our friends from Eastern Europe feel more at home), we arrived at No 5!  My first move was to go out the back door to see how the garden was, this turned out to be a bad move! Bending down to put on my gardening shoes set off a bout of vomiting and I fertilised several flower beds! It will be interesting to see what the results are. Maybe I could transform the whole horticultural scene! Anyway I staggered down the garden frightening Eudeen, our next door neighbor, who was putting the finishing touches to the wonderful landscaping she has had done. She kindly offered to get me back to the house but I managed on my own and crawled into bed.
Later that day our friends from the Church's Self-Reliance Centre, the Baxter's came to visit after a horrendous drive out of London. They arrived just in time for dinner, but sadly the smell of the lovely lamb stew set me off retching (that's vomiting when nothing comes up)! So I declined dinner but we did have a wonderful chat. After they had gone I managed to take my pills and to take in an episode of Doc Martin without ejecting anything!

I slept well and woke up in time to take my morning pills, vomit a bit and then have a welcome visit from Kate one of the District Nurses. She was amazing and explained that the vomiting was probably caused by my travelling and being in a different environment. She also explained that the large box of   medicines, syringes and other medical kit I had come home with was "just in case" stuff for use by the District or Hospice Nursing teams. Amazing!

I manage a few sips of soup and a slice of buttered bread for lunch and kept it down, hurray! Then Malcolm Ball and his wife Julie came to visit and I had a wonderful two hours with Malcolm helping me to remember all the people we had worked with and some of the exciting challenges we had overcome!  Tears filled my eyes as Malcolm thanked me for being a positive influence in his work at British Gas and I thanked him for introducing me to Emstar an introduction that helped me grow my consultancy business. Those were the days! I have been very blessed to have worked with some wonderful people.

If you did work with me or you know me and would like to remember some shared experiences and challenges do drop me a line. The best way is an old fashion e mail to ajec@hotmail,com  Facebooks OK but I am not very good at it.

Thursday, 22 October 2015

Who has been helping me at St Christopher's!

When thanking people by name there is always the risk that you leave someone out, so let me apologise to those folk for starters. I have not been wearing my glasses, so I have only been able to read names when staff have got quite close (now you ladies know it was not your bosom I was looking at, just your name badge). So here, in no particular order are the stars of St Christophers as seen by me.  However, I must not forget the chefs and their teams in the kitchen, real heroes at producing such excellent cuisine. Then there are wonderful army of volunteers, bless them and last but not lease the professionals social workers, medics and "head shrinkers"! Bless them all.

Anke - the boss, very popular with staff and patients.
Dr Victor - very good and kind
Louis - super woman (such a fast mover)
Sue - the angel of the night (with the hot drinks)
Vee - doesn't like being called Vilma
Maggie - come to help from the Ward upstairs
Marjorie - gentle and kind
Rita - who very kindly asks what I would like for breakfast
Sheryle - great happy singer
Grace - dynamic.  dinner lady
Elaine -- l am the boss, so behave yourself
Christine - a kind and gentle lady 
Dianne - quick like a road runner bird
Debbie - very helpful and kind
Geraldine - happy soul who forgets to wear her name badge!
Esther - nothing is too much trouble!
Kenny - an orderly, orderly very friendly
Geraldine- cleaning expert with a smile
Michelle - a kind person
Colleen - one of 9 siblings, a happy soul!
Angela - the water lady, very dedicated
Katy - very pretty, lovely accent
Sarah - very organised gave me a bath
Susan, helper who takes lunch orders
Jill - where is Jack?
Melrose - proud to be named after a place in Scotland
Joanna - learning the ropes
Dr Debbie - a full on doctor, who rescued me from home 
Kathy - kind and caring
Dr Matt Carey - a man with a mission

St Christophers Hospice: Something to rave about!

Yesterday was wonderful for me and I continue to be astounded by the level of care I receive here. The day started by me having a wonderful jacuzzi bath. The bath was a huge brilliant white structure raised up several feet above the floor. I thought I am never going to jump high enough to get in there! The nurse (I won't mention names, because everyone will be lining up for the same treatment) helped me strip off, and sat me on this special chair. Then she pressed the appropriate controls and I was raised up, swung across and gently lowered into water ar a comfortable 40 degrees Celsius!  Having let me soak in the warmth for a blissful few minutes, she switched the jacuzzis pump on and I was in heaven! She very kindly washed my feet and legs, then my hair and back, amazing!  Then I washed the other bits. She then let me have another relaxing soak before pressing the buttons that lifted me out of the water back to ground zero!  I was glowing with cleanliness and dived into my clean underwear.
Well if that wasn't enough pleasure for one day no sooner was I back in my room than another angel appeared wanting to give me a massage! Rosalind was present but how could I resist, so I enthusiasticly agreed. Oh! She was so gentle rubbing my shoulders, neck and back in a circular motion. She then very kindly showed Rosalind how to do it. Did she realise she was adding a new dimension to our nearly fifty years of married bliss?

Saturday, 17 October 2015

What a difference a day makes!

I am overwhelmed by all the wonderful responses I get from everyone, they do lift me up, so thank you. Some responses are from folk I have not heard from in ages, those are particularly precious.

The last post from me was pretty negative, so let me bring you the latest news.
I went on to new pain killers which really helped, got moved to a room nearer the nurse's office. I am not sure why, was it:-
1.  So they didn't have to walk so far!
2.  So they could catch me hallucinating at night!
3.  So I could answer the phone when they were busy!
4.  Because they get lonely!
I'll let you guess!
Then I had a string of the great and the good: Doctors, social workers and very helpful nurses  all wanting to help me.  The pain Eased a bit.  Rosalind agreed to stay the night sleeping on the reclining chair.   I was not surprised when she told me she had had an excellent night sleep. We are blessed that Ros can sleep almost anywhere at any time. I had a good night's sleep as well but best of all I kept my food down and had my waste disposal system function magnificently!

Today I had a  visit from a psychiatrist who I greeted with a hello I've always wanted to meet a head shrinker.  He was very good and we had a nice relaxing talk.  He decided having spoken to me that he did not need to prescribe any antidepression tablets.  Then I had a visit from a social worker who was very friendly and chatty finally I had a visit from Tom one of the doctors on my team and he said Alan I'm amazed to hear that you called Professor XXX a "head shrinker!"

Thursday, 15 October 2015

Really struggling with the cancer!

Because I was in so much pain at home and kept vomiting everything up the specialist doc from St C's decided to get me in the hospice for a period to try to stabilise me. This was very helpful as it meant the family could go to Helsinki for Stuart and Helianna's wedding on the 10th.
Sadly in spite of strenuous efforts from the medics l have been steadily getting worse. Not eating and drinking has not helped and sadly I am hallucinating. Things came to a head last night when I dreamt there was a bunch of yobs attacking a patient. Apparently I got out of bed and fought with them. I remember getting hit in the face and lying on the floor with some heavy metal on me.  The nurses came to my aid and eventually, aching all over and with a suture over a cut on my nose I was back in bed.
A lot has happened since then. I have been seen by many doctors and a new plan for medication has been worked out.  I have all my painkillers given to me by a thing called a driver.  This spreads the admissions of the drugs over a twelve hour period.  Most of my other anti-sickness medication is given the same way.
90% of the time I feel horrible so much so that Rosalind has been with me most of the day and she plans to stay the night. That is going the extra mile! I am not sure how long I can keep posting so watch this space!