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!

Wednesday, 7 October 2015

Angelic visitor provides more help!

A brief (I hope) up date on where we are with the lung cancer nonsense. Having had a miserable weekend with pain and vomiting (only made bearable by being able to watch all the Church General Conference sessions on the web, see LDS.org) I contacted St Christophers Hospice and they responded immediately by sending out an angel in the form of Dr Debbie Swann.  Dr Debbie (as she likes to be called) was brilliant, she gave me a thorough examination and reviewed what had been happening and what medication I was on.  She adjusted my medication and answered all my questions. Finally she said she would like to admit me to the Hospice for a few days so they could assess my condition more accurately and adjust the medication to suit.  So here I am sitting in bed having had my first night in the hospice.  Every one has been brilliant and I did get some sleep. Hopefully they will be able to help me keep some food down.

I think it was an old friend, Alex Barclay who shared the following quote with me that I found uplifting.
No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our character, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God.
Elder Orson F Whitney

Watch this space and I will try to keep you posted.

Thursday, 1 October 2015

The old fishermans latest report on the health front!

Now the Royal Marsden Hospital have advised that the chemo is not working and they can do no more for me, the challenge is to control the pain so that I get some quality of life during my remaining months.  This is a lot easier said than done.  Fortunately this is where the St Christopher's Hospice get more involved. Last week I was not well enough to go to my regular meeting at the hospice to review my pain control, having vomited three times the night before and still feeling rough.  The hospice kindly arranged for a male nurse to visit me at home the next day.  His name was Matt Loveridge and he was excellent.  He reviewed what was happening to me, how I felt and what drugs I was on and then he made a number of recommendations which he wrote out in beautiful script and gave to me.  I know a lot of my readers have a medical background so here is the detail:-
For pain relief - increase the OxyContin tablets to 40mg twice a day.  Continue to take the OxyNorm liquid,10 to 15ml when required.  Take Nortriptyline at 20mg in the evening.
To control sickness - take Domperidone 10mg 3 times a day before meals.
To relieve constipation - take 2 Laxido sachets in 250ml of water each day.
I also take two 500mg paracetamol tablets four times a day at four hourly intervals.
Fortunately now I am off the chemotherapy I don't have to take all the pills associated with that (what a relief!).
However I am starting to wish I had shares in pharmaceutical companies!
Two of the things the medics ask that I have difficulty in answering relates to the pain. They ask where does it hurt and how bad does it hurt? The where is the easiest to explain except that the pain is internal and varies with movement and breathing. Basically my whole right lung aches most of the time even when I am under the pain control medication. It used to only ache low down but has progressively moved up.  When the pain control pills have worn off then the pain is a serious distraction and I have to try and do something about it. On a scale of 1 to 5 where 1 is no pain and 5 is excruciating pain I feel I regularly score a 3.5 and sometimes even a 4! This is when I use the OxyNorm liquid and the heat bag!  The heat bag was made by my daughter-in-law Debbie and it contains wheat, I think, anyway put it in the microwave for 90 seconds and it stays warm for a couple of hours.  I then place it on my shoulder and neck and the feeling of heat tends to mask some of the pain.
On the good news front Rosalind and I have met with the funeral director and I have decided where I want to be buried. The cemetery is called Greenlawns Memorial Park and it is high on the North Downs about 3 miles south of where we live, well away from traffic and heavily populated locations. Hopefully I will be able to "rest in peace!"  Only flat (horizontal) head stones are allowed making for a vary open and airy scene.  I bet it makes cutting the grass easier too!