Hold your hand everday

As the pandemic continues.  We are still in lockdown.  Life continues to be on a different path.  Real life physical human beings I see; my husband of coarse, I live with him and so very grateful we have not only been lovers since 1982 but best friends.  My nurses; to tend to my gastrostomy tube, change dressings, etc, etc.  And see anyone from a distance at the door when they deliver parcels and mail.

Modern technology has saved my sanity.  Steve and I having a long lie on Sunday morning, it’s 9am and my mobile telephone has that distinctive ring.  I know it’s a FaceTime call.  Simultaneously Steve and I say know who that will be.  I click the phone and can hear the joyous tones.  ‘Morning, what are you doing in your Bed Granny’?  ‘Having a got chocolate’ is my reply.  We are having a three way conversation between our house (Steve & I) , Stuart & Alexandra, and Teeny & Grace.  It’s fab, we all blather loudly, the girls can’t believe we are still in bed. It’s Sunday, I say in my defence.  They have us laughing.  Along the hall we can hear the dogs.  They can obviously hear the girls talking and they are excited.  Can we see Buddy and Bella please.  I toddle Along the hall.  Bella is actually smiling.  They are pleased to hear the kids.  Morning Bella Boo, Morning, Buddy Boy, says Alexandra, miss you,  the labradors tails start to wag frantically.  Grace calls on Frieda the cat.  Alexandra asks ‘Granny can you go out the back and say morning to Birdie please’.  I go see the beautiful black lionhead rabbit.  The girls are ever so happy.  Right that’s enough I say, granny is wiped out now.  I sit on the seat at the table very happy and blether away .  I maybe can’t see them all in the flesh, however a video call like this makes the world worth living.   We all chat say what’s been happening and what the plans for the day are.

Both girls had plans to play in gardens.  Alexandra said she was going to be drawing and colouring in later.  Grace was going to be playing games.

 

Hold my hand and Smile Each And Everyday

Alexandra drew round her hand in her notebook,  she tore out the page.  Left the page for me with the drawing.  She said I can hold her hand anytime.  She said on a FaceTime call to me Granny I would just love to hold your hand everday

 

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I was so chocked up, it’s difficult to believe Alexandra has just turned 4 years of age.

At this difficult time in this crazy world we need to be grateful for what we have.  Make the most folks.

Alexandra and Grace:

The Arrival of The Coronavirus

We are approaching the end of March 2020 and this weekend we should be away with friends from the The Dunedin Chapter  ,

I so enjoy being part of this group.  It is our biker family.  From the second we joined we felt part of something.  A warm welcome always awaits us, a support network is available in variety of ways.  Help with the physical Harley Davidson motorcycles; buying, servicing advice, etc.  Things to do; runs, rallies, etc.  Friendship; many friendly faces, great companions, lots of advice, etc.  Socialisation; we all get together and have meetings, weekends together, nights out, lunch meetings, breakfast clubs, chippy runs, etc.  All in all I love belonging to The Chapter.  We are now on to our second Harley Davidson, I have been on motorcycles since I was under 5 years old,  on the back of my brother when my feet couldn’t reach the footpegs.  I have been a pillion to my hubby since I was 17 years of age and I’m now nearly 54.   We have had motorbikes the majority of our married life.  Fifteen months ago we thought we would dip our toes in the water and visit West Coast Harley Davidson for a look at the bikes and what they had to offer.  before we knew it we had  decided it was time to get ourselves a Harley, it was a little Street Rod.  We thought best start small  and not break the bank.  Just to see how we would like the ‘Harley way of life’ and boy do we love it.    While we loved the wee bike, it was just that, too small and So a few months later we traded it in for a beautiful fatboy low.  We got this one at Edinburgh Harley Davidson

This weekend a trip to Aberdeen had been organised by our Harley Davidson enthusiastic friends.  We were all getting together to stay a night in a hotel and have a night out and raise money for the air ambulance.   The plans were, to take a drive up together on the Harley Davidsons if the weather was warm enough and I was feeling up to it, if not take the four wheels and book in to the The Craighaar Hotel in Aberdeen

 

I was so looking forward to going to Aberdeen. Due to my health, the neuroendocrine cancer, the carcinoid syndrome, the treatment I need and the fact that I get fatigued very easily I don’t go out that often.  I find life difficult, some days a general task feels like I am walking around with a 25kg bag of sand on my back.  Needless to say I am very familiar with my own surroundings and am used to being in the 4 walls I live in.  I can be home for three weeks without crossing the door.  My district nurses come to ‘service’ my peg.  Change my dressings, administer my octreotide injection and deal with any other at home health condition I may require. They are wonderful and I couldn’t do without them.

Although I am used to spending time at home on my own, with the company of my two Labrador’s within my four walls I do spend quality time writing, which I enjoy a great deal and I have embarked on a course which I love the challenge.

Suddenly the world has been hit by an eerie storm, one which we have never seen the like before. The human race has been struck down with Coronavirus.   The arrival of the Coronavirus is here.  For a great deal of folk it has been fairly harmless, however for many it has proven deadly.   To find out a little about coronavirus visit – https://www.nhs.uk/conditions/coronavirus-covid-19/

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Countries such as Spain and Italy are ahead of the UK and have many deaths and have put in strict measures. Here in the UK, we have had to take on a different way of life. Schools have been closed, where possible people are working from home, people are instructed to stay home unless exercising, which is only once per day. Social distancing has been put in place, with everyone to keep 2 metres apart. All these measures have been put in place to try and Stop the spread of Coronavirus. This virus is escalating and getting out of hand, we need to self isolate and stop it. Many people have it, are in hospital, some very poorly and on Ventilators. It’s all such a worry. People are wearing gloves, masks and using hand gel in abundance. Hospitals are running short of ventilators. There are more people needing the machine that the country has; something has to be done.

A team put their heads together – staff from formula 1 Mercedes , staff from University College London hospital (UCLH), and a team from university college London to adapt and improve existing CPAP in a process known as reverse engineering.   Basically they have helped create a breathing aid to help keep coronavirus patients out of intensive care.  You can find out more at the following – Mercedes F1 team helps create breathing aid

Life has become very strange for many people, our country is in lockdown, bars, cinemas, restaurants and many shops are closed.  Public gatherings are banned.  Plus many more other measures are put in place.  Some people feel sorry for themselves and are sitting at home whining and moaning, complaining they are bored and wishing they could get out of the house.  Whilst its understandable that they may be bored, sitting at home when they are used to working several hours per day and keeping busy.  Or going out and having fun, playing sports or going to the cinema, etc.  However, these restrictions have been brought in for our own good and it won’t be forever.  We should take time at home, learn a new skill, cook, draw, do a bit of gardening, enjoy reading a book, do some knitting or sewing, play old fashioned board games.  And most importantly our thoughts and prayers should go out to people that are in ICU beds in hospital, on ventilators, fighting for their lives.  This virus not only attacks the vulnerable like me, or the elderly like my 87 year old father, it sadly took the life of a young lady of only 21 years of age with no known underlying health conditions, it also took the life of a 54 year old doctor, the youngest person to die has been 18 years of age.

I did read a couple of pieces of good news the supermarket Asda is donating £5 million to   fareshare and  The Trussell Trust to help the country’s most vulnerable people through COVID019  Asda will prioritise access to stores for NHS staff as of next week every Monday, Wednesday and Friday 8am – 9am in larger stores.   Well done Asda

I know the next few weeks are going to be very trying for us all.  The NHS are doing a fantastic job in looking after the patients in the hospitals, at home, etc.  Carers are looking after the vulnerable the best they can.  Supermarket staff are stretched and pushed to the limits at times, the shelves look like its christmas, with the exception its not happy, clappy cheerful customers, its frightened folks walking into the unknown.

For me tomorrow Ive got my district nurses coming to do my dressings, service my tube and give me my two weekly octreotide.  Tomorrow the nurses will be gowned up, masks on.  Whatever will my labradors Buddy and Bella say, they won’t be getting their treats for mummy being a good girl and getting a very large needle jagged into her.

First Person with Net Cancer that made me smile :)

Over 6 years ago I went to an information day hosted by   Scotland’s Neuroendocrine Cancer Charity; The Ann Edgar Charitable Trust  I went on to go to support meetings every month.  There is a group of us that have became friends and a firm support to each other, which is lovely.  Some days its good to be able to talk to someone that you know really understands how you feel and you never feel patronised when talking to each other and at times you really need that ‘I know how you feel’ conversation’

The first person I saw at the information day was such a lovely chap and his wife.  He was  smiling from ear to ear and guiding all participants that were going into the conference.  Despite having never meeting the man before you couldn’t help smiling back, he had the kindest gentle smile.  He would stretch out his very long arms and direct  you into the room.   We have became friends very quickly and seen each other at most meetings.  There is a nice core number of us that try and get together and blether and spend time together.  I have had help organising the tea party and we all went out to the theatre, day out on the barge, a night in my local pub, singing songs and doing magic tricks and said friend getting up and helping out with rope trick – oh boy we  had so much fun.    Norman was twenty years older than me and called me the youngster.  I felt he looked out for me in a way when we sat together, it was his nature.  When I organised the tea party, and my goodness what a lot of work went into it, he said, now young lady before we open the doors to the public you get half an hours shut eye.  Sometimes he would quietly talk and other times he would stretch his long arms like a giant and bellow what he wanted his audience to hear.  Norman’s first words to me were always and how are you today my dear, is life treating you kindly?  He would have that big grin on his face and it would warm my heart.   Although Norman was his own man, him and his wife came as a pair and they were very much together.  One of those most beautiful relationships each partner knows when the other has had enough and needs to leave, when they are tired, hungry etc.  They have the best tales to tell from their travels on holiday.  They separate across the room and yet communicate with just a glance and before you know it they have made a decision and you are saying cheerio to both of them, see you next time.

This blasted life limiting illness  at times imprisons us in our houses, makes one feel so ill you can’t do a thing, medication, hospital appointments, etc become a way of life – however, meeting each other and sharing some of the good and the bad really helps me get on with my journey.

I found out sad news last week, my pal passed away.   Norman was diagnosed with neuroendocrine cancer 13 years ago.  I feel privileged to have known him and spent time with him and Margaret for the last 6 years.  I was diagnosed with carcinoid syndrome 10 years ago, whilst a sad occasion like this leaves one thinking about our own mortality, I count every day as a blessing and am happy with the treatment and care I’m getting from my consultants, doctors and nurses.

Today was Norman’s funeral, unfortunately with the coronavirus the world has gone a little crazy.  We are on a lockdown situation and are living under certain restrictions.  Funeral services are allowed to go ahead, however are restricted to immediate family.  I was able to watch the service on a live podcast.  I sat in the comfort of my own home in front of the open fire and watched Norman’s funeral service.

Norman Boe was The First Person with Net Cancer that made me smile 🙂  and I will miss him so very much.   Thank you for being my friend.

“Go my friend and enter into eternal joy and peace, dance with angels in eternal light and love”

Warm Welcome in Ellon

As I woke on a bitterly cold February Saturday morning to the sound of my granddaughter’s singing voice I remembered I had something to look forward today.  We are making the trip over the Queensferry Crossing, over to Fife,  driving up the M90.

For me this is the best week for travelling, Evelyn had been in on Tuesday not only to service my gastrostomy tube but to administer my octreotide.  This is a malignant suppressant injection I get every 14 days.  It is licensed for every 28 days at maximum dose for people like me with added complications of carcinoid syndrome.   My ‘numbers’ are on the high side with my 5hiaa, my symptoms are awful and so we have it – maximum dose every 14 days.    The nasty injection is worth it.  Fewer visits to the bathroom (reduction from 12 times bowel movements per day to 4) and looking less like a character thats on tour with Ribena Juice Company.

The Our destination is a few miles north of the granite city, Aberdeen.  I have visited Aberdeen on numerous occasions.  My Grandmother is from this wonderful area of the world and my great aunt after a great deal of travelling finally settled and ended her days in Aberdeen and I have such  fond memories of visiting with my Mother as a child, playing in Duthie Park, building sandcastles at the beach. There is so much to do.   My most favourite thing alrways a visit to The cathedral church of St Machar

We were travelling up to stay over with relatives, Steve and I are not always the easiest house guests, we both blether at a million miles per hour, talk over one another, and finish each others sentences.  We bring an awful lot of luggage, I alone need a suitcase and a holdall for one night’s overnight stay, I have my pump, a lot of medication, syringes etc. I know I have my blog, however we are private folks and there are things we like to keep to ourselves.  We very rarely stay with family or friends, we usually book into a hotel however we both felt we would feel comfortable staying with Pauline and Les for our first trip to Arthrath.  Located 7 miles north of Ellon.

 

 

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Pauline sent me a photo of the sign at the end of their road, heading to their house.  The road is rough.  To me if it was covered in snow it would be more suited to skis than a car,  the large ditches in the road resemble the moguls on the ski slopes I have skied, it distinctly reminds me of the white lady I skied on the cairngorms, everywhere you turned there was another mogul to go down.  Ah, such happy memories.  As we drove down the road to the house the car bounced up and down, in and out of the ditches.  I had the feeling I wanted to lift my legs, I could hear my ski race trainer from my youthful days, the wonderful Hanz Kuval, say bend, stick, turn. As the now not so shiny BMW’s wheels dropped into another deep hole.   We parked round the back of the house as recommended by our hosts.  And so it was so much easier to get in the house, sheltered from the wind, a straight walk from the car across the decking into the porch.

 

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Where a very warm welcome awaited us.  From the minute we walked in the door nothing was too much trouble.  Thirty seconds in and the kettle was on.   The most beautiful  house with comfortable furnishings, welcoming signs of grandchildren; some toys, photographs, canvases, etc that made me feel very much at home, however, gave me a pang in my insides and a yearning to see my beautiful granddaughter.  There is an array of animals located in various parts of the house – they are amusing and you feel you want to have a conversation with them.   And I most certainly did.  Although I’m not sharing any secrets.  As I said our hosts were fabulous, they couldn’t do enough for us, coffee, tea, beer and wine on tap.  Nibbles to munch on whilst lounging on the sofa and leisurely blethering.  A lovely enjoyable afternoon to sit and have a natter, let me get another afternoon feed on pump and a bolus before getting ready to go out for the evening.  Pauline is the constant nurse and continually picking up after me, a welcome help and yes you feel safe and secure in her company.

 

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I go through to our bedroom for the night to get ready, the room is huge, I more than appreciate the space, plenty of room for all my gear.  The bed is ever so comfortable with luxurious bedding and the most comfortable plump feather pillows.    I was most appreciative of the large ensuite bathroom.  It was bigger than most peoples family bathrooms.  there was a stand alone bath, toilet, sink and bidet.  With plenty of room to move around which is very important to me, especially first thing in the morning when the bones are not quite moving as they should be.  The room is so inviting I could climb onto the bed and snuggle in and relax.  However, I know I will enjoy the company of my hosts for the evening and get myself ready.

Les did the honours and drove us to Ellon .  We were booked into The New Inn Hotel, Ellon for a meal.  The hotel was bustling and nearly every table taken.  We arrived half an hour earlier than our reservation.  The staff greeted us with a warm smile and were very accommodating and set us up a table within a couple of minutes of us arriving.  We ordered drinks.  Looked at the menu.  The delightful waiting staff were very efficient and very soon my three companions were enjoying their evening meal, Steve and Les began with starters which they enjoyed immensely and then fairly quickly the main meal came,  our hosts both ate Seabass, my hubby ordered the house burger and I picked at the scampi.  We had this delightful waiter that looked latin, he was tall dark and handsome.  Most of the evening Pauline and I teased him, as we ordered our desserts we asked where he came from since we thought he had an unusual accent.  He told us he was from Peterhead,  Oh we thought you were from somewhere like Italy we said in disappointed voices, you are a “Peterhedien”  oh what fun we had.  The desserts arrived,  and yes, naughty me  had some,  I had a little eton mess.  And yes it was worth having.  Steve had the cheese cake.  A nice touch on top of the cheesecake is scottish tablet.   We all enjoyed the food, the service was excellent.  Would I go again.  Certainly would.

 

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On leaving the hotel we went a short walk across the car park to a friendly pub,  The Tolbooth Pub, Ellon.  As I walked in I soaked in the atmosphere; it was warm and friendly.  It was busy with a variety of ages of folks.  Sitting up at the bar stools were a group of ‘middle aged ‘ folks.  At various tables were various people, as were in the lovely booths.  We made our way to a table beside one of Les and Pauline’s friends.   In one of the booths were five young lads, I’d say in their early twenties.  They looked happy and were sitting blethering and laughing, next thing they started singing The northern lights of Aberdeen.  I felt my heart pang, it was a song sang to me by my Mother, one we would sing together.  They sang, when they got to the last line Pauline and I sang along “To my home in Aberdeen” I could feel the tears, however happy tears.    I turned and looked over to the lads at the booth the young chap with the curly hair lifted his whisky glass in my direction, gave a wink and a cheeky smile – made my night.

On returning to the house Pauline and Les looked after us, we chatted into the small hours of the morning and before we knew it, 3am hit the clock.

I woke on Sunday to my FaceTime call with my 4 year old granddaughter, Alexandra, we had a wonderful discussion.  Her first words  of the conversation were you are coming home today and final words were I love you…. lots of stories in between.

At 10.30am we went to visit Steve’s auntie Margaret in Aberdeen before going out for lunch at  The Cove Bay Hotel . There were 11 of us for lunch.  And what a great lunch it was.  It was so lovely to spend some time with Steve’s cousins and have time for a catch up and a blether.  We had a table by the window with a beautiful view of the sea.  Auntie Margaret and I were right by the radiator, we were toastie.

After lunch Steve and I made our way back to East Lothian.  We had a quiet drive home.  It didn’t too long at all.   It was lovely to see our cottage.  Spent a relaxing evening with our dogs at our feet.

A massive thank you to Pauline and Les for introducing us to Arthrath.  And making us feel ever so welcome and not like visitors at all.

Big thank you for The Warm Welcome in Ellon

 

Hurrah 😀 For Dunedin Chapter

As most of my regular readers, friends and family know Steve and I are proud owners of a Harley Davidson motorcycle. For the last year we have been very happy members of The Dunedin Chapter http://www.dunedinhog.com

 


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I mentioned the motorcycle club in a previous post. All folks have welcomed us with open arms into the body of the Kirk. For us it’s been a lifesaver. Gave Steve and I new people to meet, places to go. Steve, can go out ride the bike Without me and meet up with others, and when I’m up to it we go out together and boy what fun we have.

The Chapter isn’t all about riding bikes mind you. They do a great deal of charity work. Easter egg runs, Santa runs, fundraising for The sick kids, Kats Mission, need I go on. I am very proud to be a member.

TAECT promotes awareness of neuroendocrine cancer and offers support to all those affected with cancer, net tumours, carcinoid syndrome; patients and their families/friends/carers. Have regular support meet ups all over Scotland. Health information days with drs and nurses giving up their time to offer advice.

Last weekend the chapter had a dinner dance in Grangemouth. Edinburgh Harley Davidson kindly donated a couple of leather jackets and many members donated raffle prizes. On the night, Ben and Hilary went round the room with raffle tickets to sell to us party members. Drew the raffle and there were many happy faces. A very big well done to all the folks who donated and another massive well done to members for buying raffle tickets. £830 was raised for charity.

The Chapter decided to donate the £830 to one charity. That charity is one that has given me so much support, particularly over the last couple of years. Without their kindness and support at times I would have been quite lost and lonely. This charity is Scotland’s only neuroendocrine cancer charity – The Ann Edgar Charitable Trust. http://www.taect.scot

 

As most of you will know TAECT works very hard at promoting awareness of neuroendocrine cancer and offers support to all those affected with cancer, net tumours, carcinoid syndrome; patients and their families/friends/carers. The charity has many regular support meet ups all over Scotland. Information days take place with consultants, oncologists, drs, nurses giving talks and offering advice.

 

I would like to say a big thanks to the two groups I belong for different reasons. However, both make me feel very welcome and let me be ME, no one notices my gastrostomy tube, makes comments about me not eating, etc. Its wonderful. Riding on the back of a harley davidson with a peg feed isn’t always the easiest. But we manage. Life is for living and I want to enjoy and spend as much time as I can with my wonderful hubby and hear the roar of that Harley Davidson Fat Boy ………… nothing better

 

 

 

 

 

 

 

 

3 years later and 3 kg lighter

Three years since I have came home from hospital with my peg feed after my sepsis.  It has been a learning curve of a journey with great deal of highs and lows.  I’m very fortunate to have a fantastic support network; the lifesaving NHS staff, including hospital consultants/nurses/dieticians, GP surgery, home visit team, CENT team and my excellent regular community visits I could not do without from my district nurses; amongst other things they deal with my dressings, peg feed and administer my lanreotide, the emotional support they offer is invaluable.

One of the members of the CENT team comes to see me on a regular basis.  I get weighed, we discuss how life has been for me.  How I have been , what meds I’m on and what feeds are going down my peg.  They are always on the end of the phone if I feel the need to talk in between visits or if I have a question/queerie/worry.  A great friendly bunch.

 

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Kat from the CENT team at Edinburgh’s Royal Infirmary came to see me on Monday.  We had a good chat and discussed my feeding regime and the speed of the pump.  I told her the great news that we managed a wee break to Ibiza.  My son Stuart telephoned the airline and told them about my medical condition and that I needed the pump feed and 4 bottles of 500ml per day and 5 bottles of 300mls per day – working out to quite a weight.   The airline agreed to give me free 30 kg baggage there and back.  Certainly cannot complain about that.  After our general discussions I stood on the scales.  Not happy; either of us.  I’m 3kg lighter than when I came home with the peg feed fitted 3 years ago.  I could have cried.  I could tell Kat knew I was disappointed, I couldn’t hide it.  Kat mentioned how well the tpn worked when I was in hospital.   I agreed, that was what saved me and put on the weight when I had my sepsis.  She recommends that she writes to my consultant and let him know and suggest that I get a central line – picc or hickman and get home tpn as well as my peg.   Got my cardiologist in December and see my consultant after the year; will discuss this weightloss and eating regime then.

 

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A Trip To Royal Free In London in April

I had an appointment with the big cheese in London:  Professor Martyn Caplin.  He runs a neuroendocrine tumour clinic at The Royal Free hospital.   He is highly specialised in his field.  And people are referred from many different countries,and travel great distances to see him.  My mere 400 miles, is starters orders for some.  I have a lot of faith in our Prof Caplin.  He is very thorough, takes time to listen to what you have to say.  And most importantly remembers you are a human being and have feelings.   I know when I go down to see him I will most likely be seen later than my appointment time.  This is because he gives every patient the time they need and deserve.

For my appointment in April I need to get myself organised. Firstly we need to book a hotel for a night before and a night after the hospital.  I’m not your average human than can just jump fly down to the smoke, get seen at at the hospital and then travel back.  I tried it once.  It took over a month to recover from the exhaustion.  Premier Inn Booked.  Now time to sort the train tickets out.  It’s great that you can book everything online.  Train booked, and we can get the tickets at the station right up to the day we travel.  Cases are packed.  Lots to go in my case, feed pump, giving sets, feed, dressings, creams, medicines, clothes, etc.  Nurse has been to change my dressing,etc.  dogs are looking at the cases suspiciously.

There has been a slight hiccup with the dogs boarding.  They were scheduled to go stay together with Sally whilst we were in London.  Sally has Buddy and Bella’s son Harley.  The week before we are due to go, Bella goes into season.  Both Bella and Buddy only have one thing on their mind and it’s not walkies.  We have to put plan B into action.  Our friends, Louise & Keith look after Bella and Sally look after Buddy.    For both our dogs this is the first time they have stayed away from home.  Anytime we have ever been away one of our sons have looked after the dogs.  This was a big deal for both the dogs and Steve & I.   I have to say both dogs were looked after impeccably.  They were walked several times per day, played with.  And when we came home we could tell although they were very happy to see us they had enjoyed their time away.

Our train journey was eventful.  We met a very gutsy lady and her 7 year old son.  They travelled from York to London every Sunday.  The young lad attended Great Ormand Street Hospital for an injection.  He was under a trial drug scheme.  He has muscular dystrophy.  We chatted, shared stories, laughed.

When we got to the hospital we used the self check in.  Before I could take a seat in the busy waiting room the nurse called my name.  We walked down the corridor and into the room.   She took my weight. she said.  The Prof wants to see you, if you just take a seat along this end.  Steve and I parked our bums on the seats and waited on Prof Caplin calling me.

Fifty minutes passed my appointment time the familiar gent calls my name.  Prof Caplin kindly waits till both Steve and myself are in the consulting room.  We take a seat.   There is a lot to discuss.  Since I saw him last I’ve had my gastrostomy tube fitted, been hospitalised several times with sepsis/infections, had feeds, cream and meds changed.   After we talk, he helps me up onto his couch, he examines my belly and has a good look at the peg site.  Listens to my chest, feels my neck, under my armpits.  He says  quite a lot of granulation there.  The general all round site and your skin is healing well but you do have a long way to go yet.   I take a seat back beside Steve.  Prof mentions my last 5HIAA test was elevated. The result was 175.  A tad higher than he would like.  He says he would like me to get a scan.  Steve pipes up,  will that be a gallium scan.  The prof immediately answers us,  I can organise that for you, no problem.  You will only wait a few weeks on the scan.  I will book it now whilst you are here.   He then goes into the drawer in his desk and takes out a card and hand it to me.  This is the number for our specialist nurses.  Once you have had the scan and the result is in the nurse will phone you and discuss the results with you.  And what happens next.
We were back home in Scotland three days later.  Two days after  we arrived home the telephone rang, it was the nuclear medicine department of The Royal Free Hospital in London.  My scan was in eleven days time.  Certainly cannot complain about the quality of the service I am getting.