Two Palaces and a Castle

Well these last couple of weeks haven’t been the best. Yes the restrictions on lockdown are gradually easing and we are getting to meet up with others, most folks are being careful and abiding by covid regulations. For example, wearing face masks in shops, keeping a safe distance from others, washing hands, carrying hand sanitiser. I’ve not been feeling on top of the world. My nurse has been coming in and she has got to know me pretty well. One look at me and she knew there was something wrong. Two months ago I had the burst balloon in my gastrostomy tube and I felt that I hadn’t really gotten over it, the entire tube has been changed twice due to problems of it bursting in my tummy and extreme pain.

Last Wednesday I just wasn’t feeling good at all. Evelyn my district nurse came in to service my tube. She looked at me. Elizabeth she said, You are looking a shade of grey. How are you feeling? I pathetically winced and answered her back, Oh my, I feel absolutely shocking. In fact I feel like I have been kicked in the tummy by a horse. My solar plexus area was excruciating, everything and anything was an effort, to do the simplest task took maximum effort. Evelyn got down to business and attended to my tube. She could see that I was experiencing a lot of discharge from my stoma site. Time to change your tube again early…………

And so down to business instantly. Oh my goodness it was absolute agony, I could feel the saliva run down my gums, feel chest palpations banging in my ears; throb throb throb. The perspiration beads running down my head, I could feel my hair getting wetter. Finally the tube pulled out. It was gunky. Changed for another size 18 French tube. The gunky tube sent to the lab at the hospital. Skin covered with creams etc. Dressing on. In the afternoon the phone rang, it was the doctor, asking how I was, I told her how awful I felt. Antibiotics were prescribed. I need to get either IV antibiotic or antibiotics that get put into a syringe and put in my peg. I got a sledgehammer set of antibiotics and told to double my hydrocortisone replacement therapy. This medication for one week.

Following Wednesday I get my tube dressed and my octreotide injection; my two weekly expensive injection in the bottom. Not feeling on top of the world but feeling much better than last Wednesday.

Thursday my NET specialist telephoned me. We discussed how I’ve been. Long and short I’ve to get a CT scan and an echocardiogram. He is concerned since my last results were in the high region.

To blow the cobwebs away on Thursday evening I had a lovely trip as a pillion passenger on my husbands Harley Davidson Fat Boy Lo with some of our friends from The Dunedin Chapter. https://www.dunedinhog.com My hubby organised the mates run. It was a great wee run for a mid week trip in the evening – Two Palaces and a Castle.

Meeting up at The Gates of Holyrood Palace

We met at Holyrood Palace in Edinburgh. https://www.royal.uk/royal-residences-palace-holyroodhouse Holyrood Palace is situated at the bottom of the Royal Mile with a beautiful view of Arthurs Seat. It is the official residence of The British monarch in Scotland. The drive through the park towards the palace was beautiful. Arthurs seat the extinct volcano makes a stunning backdrop for many photograph. The loch has swans and ducks is attended by lots of keen visitors. Many folks choose to jog around the park and I can see why they want to run on this lush green grass. We wait at the gates of the Palace until all friends get together. Once we are all on board. Steve talks to everyone and lets them know what the route will be. Next stop will be……

Our capital city: we had a beautiful drive up through the park, round by the commonwealth pool and through some sights of the city. As we drove along George IV Bridge we passed Grey Friars Bobby, we turned left at the lights and up The Royal Mile. All ten harley davidson motrocycles drove carefully over the cobbled streets of Edinburgh and into the entrance of Edinburgh Castle. The sun was shining, the roar of ten bikes exhausts; music to my ears. As we drove through the entrance you could hear the vroom vroom echo. There were people up the castle enjoying the views over Edinburgh, as we entered they turned their heads and watch us come in. By the look on their faces you could see this was not an everyday occurrence for most of them.

After a stunning view of auld reekie from the castle and a quick presentation of a very small cake (one that fits in the day pannier of the Harley Davidson) to Hazel to say Happy 60th lockdown Birthday sister. We were on our travels again. We were heading to our destination. Fifteen miles west of Edinburgh, we were heading to Linlithgow. We took our way through the town, down the Mound, along Queen Street. Along Davidsons Mains heading to Barnton, on the outskirts of the city approaching the beautiful view of the forth. We took the A904 from Queensferry to Linlithgow. We found an excellent place to park. I sat at the benches and had a lovely chat with my friend Colin, whilst most walked down to an excellent fish and chip shop and got some tasty fish and chips; on location between Edinburgh and Glasgow the evening meal came with a choice of salt and sauce or salt and vinegar. Great food was had by all.

Found A Great Place To Park The Bikes And Rest In Linlithgow

You can look up Linlithgow Palace at https://www.historicenvironment.scot/visit-a-place/places/linlithgow-palace/

https://www.thecastlesofscotland.co.uk/the-best-castles/magnificent-ruins/linlithgow-palace/

A Walk With The Dogs

Well its been quite a while since we have had limitations due to coronavirus. For many of us life has became a new normal, there are folk that listen to radios and watch the news on the tv in the hope for lifted restrictions. In the passed weeks restrictions have been gradually relaxed to allow us to see one another, within certain restrictions. I’ve been at home with my dogs and what I have wanted most is A Walk With The Dogs.

In Scotland this is our advice for now https://www.gov.scot/coronavirus-covid-19/

We are blessed to live in the country. Surrounded by beautiftul country side and not see a person, shop, house, or car for miles or hours. You may think that after being cooped up in the house you are desperate to talk to someone, alas no. The beauty and tranquility of our surroundings brought the most fantastic memories flooding back. Such wonderful thoughts and recollection of amazing trips with the boys, paddling our feet in the water and building a dam. For this walk I had the perfect company; my beloved husband and faithful labradors. They were just what I wanted and needed on this midweek evening.

We took a drive to St Mary’s Loch and Megget Reservoir. One of our favour places to walk the dogs in the evening , not a person in sight. At St Marys Loch there is a lovely cafe, that is usually open during the day, serves not only a great cup of coffee and cakes, but does great lunches too; fills the belly of many a biker with delicious homemade macaroni, curry, lovely sandwiches.

St Mary’s Loch is a lovely spot to sit and have a rest after a walk or drive. The drive to the loch is pleasant whichever way you are coming from, either Edinburgh, or down south. The loch is the largest natural loch in the Scottish Borders, its 5km long and 1km wide. It lies on the south side of the A708 between Selkirk and Moffat and is only 45 miles from Edinburgh, well worth the drive. The loch was created by glacial action during the last ice age. Why is the loch called St Mary’s? There was once a church dedicated to St Mary which once stood on its northern shore. Unfortunately only the burial grounds are now visible.

St Mary’s loch is fed by Megget Reservoir. The Reservoir is in the valley in Ettrick Forest in the beautiful Scottish Borders. The 259 hectares reservoir is held back by the largest earth dam in Scotland. The reservoir collects water from the Tweedsmuir hills.

The drive to St Mary’s loch was a fun packed one. Steve and I were singing songs in the car like a couple of teenagers, the dogs were panting in time to the music. They look out of the window and you know they remember every last stop and treat they had the last time they were in the car. As we drove through Innerleithen they got excited in anticipation, thinking we would stop at the ice cream shop and treat ourselves to a cone. No such luck, shops closed. Buddy’s face fell like a sulking child getting the wrong toy, However, the elation when we opened the boot and they got out into the open space. They ran about 10 yards, both of them came right back to me, Buddy gave me one almighty slobbery kiss so hard on the lips he almost knocked me over. Their way of saying we love you guys. You could see the happiness on their faces. Buddy my ever so handsome Fox Red Labrador and Bella, Golden Labrador; she is sensitive. Both dogs are very loving.

Buddy at Megget Reservoir

St Mary’s Loch

St Mary’s Loch

The road alongside the reservoir is fairly uneven and narrow

Megget Reservoir

Megget Reservoir

Megget Reservoir


Megget Reservoir

Megget Reservoir

Megget Reservoir

Bella testing the water at Megget Reservoir

Buddy exploring at Megget Reservoir

Steve, Buddy and Bella having a walk at St Mary’s Loch

On the road from the loch to the reservoir it is narrow and somewhat uneven. It is a fairly steep incline to get up to the reservoir. As you are driving you pass some beautiful scenic landscapes. The road can get a little hairy at times and you have to remember what goes up usually comes down. Lets just says we were going slow enough to take in the enjoyable scenery.

Megget Reservoir


Megget Reservoir
Megget Reservoir

Megget Reservoir

Megget Reservoir

Megget Reservoir

Megget Reservoir

Megget Reservoir

Megget Reservoir

Megget Reservoir

Megget Reservoir

The dogs reluctantly jumped back in the car and we too grudgingly took our seats in the car and made our way on the scenic five and a half mile journey to Talla Reservoir, just one mile from Tweedsmuir in The Scottish Borders. Talla Reservoir is an earth-work dam fed by Talla water. And is supplemented by water from the Fruid Reservoir nearby. It was opened in 1905. To assist in bringing the materials for its construction, the Talla Railway was built.

Talla Reservoir

Talla Reservoir






Second exercise of the evening and the dogs were very happy, tails wagging franticly. Big labrador grins on their faces; all labrador owners will know exactly what I mean. And if they could talk they would be saying thanks ever so much for coming here, we know you love it, so do we. There was a bird chirping its head off and yes it though Bella was going to go chasing it and have it for dinner. Bella wouldn’t. She would be more inclined to go get it some food or give it a cuddle. She has such wonderful mothering instincts, but the bird didn’t know that and it was quacking its head off so we moved on and left it in peace.

We had a wonderful time, it was peaceful, the dogs really enjoyed. Scenery was beautiful. Weather was dry what more could you ask for.

Time to jump in the car yet again. One last pit stop to do. It has many childhood memories for me, lots for my children. Was the route my uncle Allan took me on when I was learning to drive. We did many charity cycles, predominantly The Borders Push for Testicular Cancer. We were now travelling the 22 miles Talla Reservoir to The Meldons. As we took the right hand turn, signpost “Eddleston via The Meldons” and started climbing the narrow unmarked road. Buddy couldn’t contain his excitement, tail wagging, and his quiet panting sounded like an anonymous heavy breathing caller on the telephone. “Nearly there sweetheart” I said to him. Bella licked his ears. At last we arrived.

Steve, Buddy and Bella at The Meldons
Steve crossing The Water With Bella at The Meldons
Steve at The Meldons

The drive down to The Meldons was more than a pleasant one. Looking out of the car window as Steve drove and we chatted, there was so much going on. Sheep in fields, birds flying in the sky, so many different hedges, trees, etc. Various crops growing in fields, an array of different colours. We didn’t pass one car on the road. But then it was midweek and after 8pm by this time.

The dogs jumped out of the car as if they had never been out all day. Bella loved the water and paddling around, Buddy not so by this time in the evening he didn’t want to go in the water. Instead he was on a rabbit trail, nose to the ground and sniffing around and around very happily.

As I gently plonked my bottom on the heather and sat down to check how much feed I had left in my backpack, after all we had been out for quite a while. Great I still have at least over an hour on my pump feed to run. Sitting on the cushioned purple heather I looked around. Such happy memories came flooding from over the many years, lots of fun and many trips to this lovely location with family and friends. Sadly some people that are no longer with us but the reminiscence carries on and I will always have wonderful thoughts and memories. This is one of our happy places. For us a go to place.

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

 

 

 

 

 

 

 

 

What and who keeps me going……………

Prof Strachan asked me to go see Prof Seckl. That day came, on walking out of the room after seeing Seckl I felt like I had hit a brick wall. He was lovely, my kind of guy; told me how it was. And certainly left me under no illusions. A lot of water has gone under the bridge since then. Many treatments, meds, sepsis, infections, peg insertion, trips to London hospitals under the care of the wonderful Prof Martyn Caplin, etc, etc.

Living with this disease is so difficult. Every day produces a challenge and no one day is the same as the other. My carcinoid syndrome can be very unpredictable and difficult to live with. The palpations, flushing, diahrea, chest pain, weight loss, sudden drop in blood sugar, malabsorption, photosensitivity – need I say more. All these symptoms have a knock on effect.

The day my consultant Mark Strachan handed me the card with details of The Ann Edgar Charitable Trust it was a lifesaver. What fantastic support network and great friends I’ve made. Cancer Patients, their families, friends get together for net natter meetings. Share like minded conversations. We know what each other are going through. The charity runs information days by health professionals for both patients, families, friends and health professionals. I’ve made some brilliant pals, sadly a few of them are no longer with us. And boy does it hurt that they are no longer here. Two of ladies in particular I miss terribly. Thats the reality of the group. Our condition is incurable and its inevitable it is going to happen. While its hard to meet folk, get close, and know they are going to leave. Well I guess that it will happen to us all one day. And I would rather have a great time getting to know these lovely folk, sharing some time, even if it is short – shorter for some than others. When we do meet we have fun; go to the pub; have a magic show, ride on a barge, go to the garden centre, go to the theatre. I just know I would have struggled to have gotten through the last couple of years without the chat and support of my cancer buddies.

Whilst I get support from the group. I get an excellent support network from my nurses. they are absolutely fantastic and I’m sure I would go completely bonkers if they didn’t come in before lunchtime and deal with my gastrostomy tube, dressings, give me my octreotide, etc etc. Oh as well as giving my labradors treats. Buddy and Bella love Nurse Evelyn very very much.

My family & friends – you guys are amazing, as always. I couldn’t get through the day without you. It isn’t only the big things like taking me to the hospital, helping clean the house, etc its the love, a smile, touch, a simple text or WhatsApp, a short phone call – no there is no such thing as a short phone call with me – that really helps me feel better.

Since I was a child I have always love motorcycles. My brothers had bikes and I loved to ride on the back of them. When my boyfriend, aged 18 got his first bike I was soon on the back. We got married, day of our wedding to get a pair of shoes for our wedding I jumped on the back of the bike, nipped into Edinburgh and bought a pair. Day before giving birth to our first son I was on the back of husband Steve. Thirty two years later, husband and two sons, Tony and Stuart all have bikes. Steve and I have changed direction and we have gone for a Harley Davidson. We have joined a Harley Davidson Owners Club – best thing we have ever done. Days I feel rubbish Steve can go out on the bike and be with the guys. We have made many new pals. Its like a big family. Who are they? The Dunedin Chapter Scotland. They have just celebrated their 25th birthday. I go on the back of the Harley Davidson with my peg feed on. Couldn’t get on it any other way. Need my sugars to stay up. Its fun, I can put all the worries to the back of my mind and enjoy the thrill of the ride. Meeting new people is great. It doesn’t have to be exhausting I can sit on the bike and get off, join in when I’m up to it, go to a hotel for a rest and if I like or come home and sleep for the week. Its worth it. Its actually really good to be exhausted and sore and say you have actually done something. Most days I’m fatigued and sore anyway. When we want to go somewhere thats a distance away I use my disabled persons railcard and Steve drives the bike, we meet up at the location. It works. We only joined the club in February and already we have met many lovely folk and have been welcomed into the body of the kirk. Steve goes on regular rides weekly and meets up with the guys. Enjoys quality time being ‘Steve’ .

Life is for living and while I am still here I want to make the most of it and spend time with my family and friends. That includes quiet time with my hubby, time with family and friends and time with Ann Edgar Charitable Trust and The Dunedin Chapter. All help me cope with the dark days, the pain and sickness and the most awful days I just feel I can’t get out of my bed. Thanks Guys.

A trip to Edinburgh’s Royal Infirmary

Saturday evening I’m lying on my favourite sofa propped up by a mountains of cushions all set to have a quiet evening with the love of my life.  It’s 8pm and I turn and look at Steve, don’t feel too good, I say.  I can feel my tummy erupting like a volcano, gurgling and burbling .  I slowly ease myself of the sofa and head to the bathroom.  MADE IT JUST IN TIME.  Boy it wasn’t pleasant, I know no-one passes perfume, but the aroma was the stench of the septic tank when the pipe was ran over by the farmer and it leaked into the back field, believe me that day wasn’t pleasant either.  Although it was minus the tummy pain and all that came my way over the coming week.

From 8pm till 10pm the running to the loo got more frequent, yes my lanreotide is half way through, and I get diarrhoea, but it hasn’t been this bad for a long time.  I was exhausted.  I dropped off to sleep.  An hour or so later I woke up, feeling freezing, the pain in my tummy so bad I felt I couldn’t move.  I remember whimpering like a baby, and thinking to myself get a grip woman.  I just couldn’t.  I looked over at Steve.  He said While you were sleeping I had to run to the loo too, we both must have a bug.  I managed to get myself to the bathroom again, it was fleeing out.  oh no, here comes the sickness.  The first thing I could grab was granddaughter, Alexandra’s Potty.  I opened my mouth, no effort; out came the most horrendous vile and obscene volume of brown sickness.  Once it started I could not stop.  I began to sweat.  The next thing I remember Steve picking me up in the hall, all I had on by this time was pants and a cami vest.    Back on the sofa at last.  I felt safe.  I had the potty by my side.  Thank goodness it has a lid.  My head is banging, pain in my stomach, thumping in my chest; palpations like I have never had before.  I drifted back to sleep.

I suddenly wake, Its roughly 2am.  I have this crushing pain in my chest.  Feel like Im going to suffocate.  The pain moves to my shoulder.  To be honest, I don’t know if its two seconds, two minutes or ten minutes later.  All I know is I’ve never had pain like it and its frightening and very very lonely.  I thought I was going to meet my Maker. I lay quiet and let it pass.  My tummy was so sore, fortunately I had a pad on, one less thing to worry about than waking up on the toilet floor and poor Steve trying to deal with that too.

Before I know it its 7am.  I say to Steve, You need to call a Doctor, I really don’t feel well.  Steve called 111, spoke to the advisors, they decided the paramedics needed to come.  The ambulance came quickly.  The paramedics were super.  I can’t remember too much about them, but what I can and what Steve tells me, they were kind, caring, super efficient and very professional.  The one thing I do remember is I felt in so much pain and so sick I couldn’t hold the gas in air to my mouth, the paramedic  gently placed it and held my hand and told me I could press the button to release the gas for pain relief.

 

 

edinburghroyalinfirmary

 

 

I believe A & E was busy but with being brought in by ambulance in total agony, having a temperature on 40.9, having low blood sugar, I was very irritable and confused and that was all before routine blood tests,  I got treated and seen right away in immediate care.

For me the day came and went, my voice was Steve.  They took blood.  I had elevated white cell count, elevated neutrophils, high troponin, low potassium, low magnesium, abnormal ECG.  I needed to be admitted to a ward and to a room of my own.   Within minutes of the results the bags of potassium and magnesium were intravenously going into me.  A nice big dose of IV morphine to keep the pain at bay, an intramuscular injection for sickness.  An IV dose of hydrocortisone steroid replacement.  With ECGs every 3 hours.    They got me settled in a bed and ready for transfer to a single room.  Steve drove home for some personal things for me and came back, he is such a support, he goes that extra mile for me all the time; what a star.  He is my shining light.  When I woke up and he wasn’t there what an empty feeling I had inside me, then I just closed my eyes thought about him and once again it felt like we were together.

The staff had a lot to do to get me comfortable, once I was all settled in a bed at the Medical assessment ward, they got me moved to the appropriate ward.  I was moved to ward 207.  Where they were prepared for me, had my single room sorted and its a ward that is used to patients with artificial feeding which is great.  207 is Edinburgh Royal Infirmary’s busiest ward.  I spent one whole week in the ward.  My next blog post will be my weeks experience.

 

Its The 10th of The Month Woo Hoo !!

For most people the 10th of the month won’t mean very much.  But for us folks lucky enough to be involved with The Ann Edgar Charitable Trust  (TAECT) up here in Edinburgh we have chosen to have our Net Natter get togethers on the 10th of the month.   The meetings don’t only take place in Edinburgh, amongst other places folk get together in Aberdeen and Glasgow.

NET Natter Meetings are informal support meetings which offer an opportunity to meet with others in the (reasonably) local area who are affected by Neuroendocrine tumours  and carcinoid syndrome – patients, carers, friends and family.

I’m particularly looking forward to going to this support group today.  Since I haven’t seen most of my chums from the group since I organised the music event to raise money for the charity in November.  Its these guys that understand how I feel at times, take time to listen.  Don’t get me wrong not that other friends and family don’t offer love, support and give great advice at times , but the mutual understanding of fellow ‘netters’  is rather unique.

Since I have been involved with TAECT I’ve had a fairly bumpy ride; in and out of hospital.  The usual scans and blood tests.  Trips to  The Royal Free Hospital in London.  Nasal Gastric tube insertion.  Gastrostomy tube insertion.  Sepsis, with ten week stay in hospital.  During all this, amongst other things, the guys I’ve met at the meetings have messaged and telephoned me to see how I am.  Visited me at home.  Visited me in hospital.  Helped me organise the successful tea party.   And much more…….

Since November our life has been pretty hectic.  My hubby, Steve, who always supports me, is by my side regardless.  Has had 5 operations on his eye to try save the sight.  Steve has had a detached retina.  It has been problematic and not gone the way it should.  Here we are in April five operations later and hoping that he will only need to wait another 8 weeks and then get one more surgery.

Needless to say we have found life fairly difficult. After surgery Steve is restricted in driving, after one week as long as he doesn’t get double vision and he can pass the vision test he can drive.  This helps a great deal, both physically and emotionally.

Tomorrow morning I have Evelyn my nurse coming to the house to change my dressings and service my peg feed. It will be so good to say to her that we have been to the Net Natter meeting.

 

 

 

Netty-in-Kilt

 

You can find out more about The Ann Edgar Charitable Trust here

 

 

Making The Most………

Wow its been a while since my fingers have tapped out a post.  To say I haven’t jotted down anything would not be true.  However, everything I have written recently has been very personal and Im not quite ready to share these thoughts.

It’s the beginning of July the last post was published in March.  Quite a lot has gone on in my life in the last 4 months.  The puppies have all grown, and gone to new homes.  They have left a footprint on my heart – they were jolly hard work but oh so lovely to have.  We kept one from the litter.  A stunning young lady.  We named her Bess.  And yes she is turning out to be just we hoped; a great combination of mum, Bella and dad, buddy.   Bess is already taking note to sit and wait when nurse Evelyn is attending to me.  She is intrigued in all the help that a grown up Labrador parent can be.  

We had the honour of attending and celebrating Sophie’s first Holy Communion in May.  What a wonderful day that was.  Alexandra and Grace were ever so happy to get into their dresses and drive through to Glasgow.   What a day to remember.  So happy, full of laughter and love.  Quite a memory.

Sophie trying to beat Stuart’s time completing the rubix cube. 

Sophie with Alexandra and Grace at her Holy Communion Celebration.

I felt far from my best in the last few months.  Seen my consultant, dietician, several hospital visits.  My wonderful nurses come to the house and cater to my needs.  I’ve lost weight which is a bit of a bummer.   My gastrostomy tube snapped which was slightly annoying- lovely staff from the hospital came out straight away with a new part.  Now that’s what I call service.   There has been a fault with the batch – there has been a run on broken tubes 😂 

On the 10th of each month I get the chance to meet up with net cancer patients.  Through the charity The Ann Edgar Charitable Trust.  We have a great time blethering away, sharing stories.  10th June my sister hazel drove me to haddington to meet up with the others for a coffee on a Saturday afternoon.  July 10th Steve and I went in style on steves BMW motorcycle to the evening meeting.  The meetings help me a great deal.  They give an opportunity to talk, share experience and most important be YOU.   Looking forward to the next one.  

Lanreotide Injection with a special delivery

As usual the run up to my injection was met with even more trips to the bathroom.  Bowels  working in overdrive.  The day my nurse suggested I get incontinence pads delivered, I was a tad reserved, now I couldn’t do without them.  Before I started getting the jab every three weeks I had total uncontrollable running to the loo, more than ten times per day every day.  Now its greatly reduced.  On a really good day, its three times a day, the week before my injection is due I’m met with a rapid increase of visits to the little room.   This week as well as my usual company of my companion dog, Buddy.  We had Bella getting up with us too.  Bella is our 4 year old labrador retriever.  Who is heavily pregnant.  And lets just say the puppies were moving around in a way that she couldn’t hold the loo in for too long.  Poor girl.

The night before my injection Bella starts getting even more restless, comes to me and gives me a big hug, goes into her large birthing box bed and starts digging the bed to make it comfortable.  She is going to go into labour.  Boy its going to be a long night.  Bella starts to pant and shows all signs of first stage labour and then second stage.

At 0045am the first pup is born a little girl.  She is a perfect fox red labrador retriever.  Just like her daddy.  Bella is so good, bites through the sack, cleans the little one up and welcomes her into the world.  I give Bella a reassuring cuddle.  And make sure the little and Bella are ok.  They are.  I take a photograph of them,  I tell Steve first of course, and then send proud messages of the exciting first birth.  My friend Louise lives three miles from me and asks if she can come and observe Bella giving birth and be of any assistance to me.  She is there for the rest of the litter delivery.

 

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By 0725am there are 8 puppies born into the world.   Steve comes in to see Bella and is there for pup number 9 and 10.  Bella feeds the puppies and a big rest.  Despite being on cloud nine and so happy I’m shattered and feel like I can hardly put one foot in front of the  other. I get myself washed and dressed my nurse will be here this morning to check over my gastrostomy tube, change my dressing, and give me my lanreotide injection.

10am my nurse Evelyn walks through the door.  At first Bella barks, only until she realises who it is.   Evelyn pops her head into the room to view the pups, and then walks along the hall.  She scrubs up and then does all the needful for me.  As my faithful labrador retriever, Buddy, sits by my side and watches everything my nurse does.  I get ready for this painful deed to get done.   Tummy first I think she says.  The soiled dressing taken off, site all cleaned, helan cream and cavilon applied.  And then my nice new clean dressing put on, carefully with tape not to touch my skin and cause a reaction.  Evelyn  then picks up my lanreotide injection.  I get this every 21 days.  Its your left side this time she says as I slip down my knickers.  I then have to work out which way to lie so evelyn can inject my left buttock, I have enough problems with this at the best of times, put lack of sleep into the mixture and we have a recipe for disaster.  I was this way and that way on the sofa. Evelyn said, just a minute and listen to me and then lie down like I tell you,  it worked a treat.  As she administered the injection of lantreotide buddy sat a few feet away watching all, making sure all was good.  Which it was.  All done.    Everything put in the sharps box.  A good discussion between me and my nurse, as always.  Notes written.

 

 

 

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Steve calls my name along the hall.  I take myself along inviting my super nurse with me.  Bella is having a contraction, and as in previous seems to want me to work with her as a team.  I rub her tummy and reassure her that I am by her side.  Come on Bella, one big push for mummy, I say to her.  I can see her body contracting, the pain in her eyes.  My lovely dog looks so tired.  I can see a little tail appearing and a foot, one last push Baby belle.  And so she did.  Out comes the most beautiful little puppy.  Puppy number 11.  Bella is exhausted, I hold it while Bella bites the chord, cleans him vigorously, suddenly a little squeal comes from the puppy.  Bella wags her tail.  He is perfect and she is happy.   Puppy number 11 was born at 1118am.   What a team, you both make.  Evelyn says to me.  I feel very proud.  Bella gave birth to 8 boys and 3 girls.  I’m so pleased that things have gone well.  My dog is well, her puppies are healthy and of a good size.  Buddy, the daddy, watches on eagerly, I know he is desperate to play with the little fella’s.

My nurse managed to see the puppy being born, she got more than she bargained for on her home visits for this Thursday.   I certainly do not doubt that she has eventful days but I guess she doesn’t have puppies making an entrance into the world very often.

 

A wee bit of home assessment from my nurse

One thing and another its been a busy week.  Started with a visit to the GP on Monday, she is perturbed that despite I’m on my new super duper feeding regime through Lavita, my gastrostomy feed that Marion from the CENT team has carefully worked out for me and I am getting food pumped into me 20 hours per day, I still have an underweight BMI and haven’t gained an ounce.   I’ve got that bloody awful feeling that I need a kick up the ass, I could lie on the floor and curl up in a ball and sleep.  The Doc was also very concerned with the fact that I have difficulty with once of the most important things – getting washed.  Our shower is over the bath, between my poor co-ordination, spontaneous hy0pogleamia, the pain I get and my gastrostomy tube climbing over the bath has caused many accidents: resulting in severe bruising and a hurt pride.  Long and short of my GP visit: bloods taken, my steroid replacements have been increased for the time being, I have to visit her again soon.  We need to get the bathroom sorted.

Its lanreotide week and boy do I know it.  The bowels are flowing more than normal and for the third time the urgency at 3am disturbs my poor sleeping hubby.  Buddy sits quietly at my feet, replacing the lovely warm slippers that I had no time to put on.

 

 

 

Evelyn, one of the nurses comes in on Thursday morning.  The dogs are happy to see her.  They know the routine and watch all that is going on.  She looks at the two of them and says well you will have a wee wait on your ‘doggy mars bar’ today.  Got a lot to get through with your Mummy.  Gastrostomy  site tackled first.  Dressing taken off, all cleaned, the necessary done, new dressing on.  Skin checked and other issues addressed.  Then onto my lovely injection of lanreotide.  It may be a big pain in the butt and cost the NHS a small fortune but it a godsend to me.  My diahrea has reduced from over ten times a day to 3.  And those awful flushes have greatly reduced.  The run up to the injection the symptoms get more problematic but nothing like before I started getting it.  I really wish it had a magic formula and helped with the malabsorption.  Injection in, all sharps in appropriate box etc.

Evelyn takes a pew.  Pulls out a white folder and talks to Steve and I.  Remember last week I asked you some questions and you did well, she said.  That was a base line for us for your mental awareness.  Steve made an off the cuff funny remark and we laughed.  Yes you can only go downhill she said.   No onto some physical questions.  It was all very thorough.  Asking me questions such as can I roll over in bed.  Do I need help with washing and showering.  A great deal of emphasis on my meds, eating, all the personal issues such as my bowel habits, aids I need and use, what I can manage and what I CAN’T.  As always Evelyn was super efficient; making me feel so comfortable and at ease and still managing to get all the appropriate essential information that has to get detailed down.    The nurse is an angel she goes above the call of duty.

It was good Steve was here for all the discussion.  Evelyn already knows how much I rely on him and how difficult things are such as showering, setting up feeds, getting my medication organised – we didn’t need to go into the nitty gritty.

The outcome; I’m an at risk patient.  BMI far too low.  At risk of falls.  Has pain.  Risk of infection.  I dolly daydream into a daze, I furniture walk without realising it.  The one thing I certainly cannot do is get up of the floor on my own. Give me a piece of furniture or better still my devoted strong man – Steve.   I love this man 💕💕

First Steps To Writing A Care Plan

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I had an appointment at the Western General Hospital with a consultant I have never seen before.  The Team she is with is The PACT Team.  This is Patient Experience and Anticipatory Care Plan Team.  The main purpose of the meeting was to discuss my health problems and for the consultant to take notes and later write up a care plan which can be accessed by A & E staff and out of ours doctors, to better understand my health problems and my preferences.  Once the plan is written up a copy will be sent to my consultants, my GP and myself.

 

It was rather a daunting experience, chatting about any possible imminent admission to hospital.  The consultant was lovely, and she explained everything.  It gave me every opportunity to talk and ask questions.   We discussed what brings me into hospital and what is best for me and what staff would benefit from knowing.   She asked me some very personal questions and I gave her truthful answers.  It was easy to chat to her, she was kind and caring.  She turned the computer screen round so I could see what was type written about me.  There it was in black and white: various medical conditions that affect every day life.  Just for a moment it was once again like hitting that brick wall.  I looked at the screen the words were a blur.   Seconds later we were chatting…………

 

Do I think I will benefit from the care plan?  Hell, Yes!!  The Doc took note of all the problems; e.g. carcinoid syndrome, profound hypoglycaemia, labile blood pressure,  gastrostomy feed tube (leaks), poor co-ordination, photosensitivity, hydrocortisone replacement therapy, lanreotide injections every 21 days etc. etc, etc.  And she made a note of what staff need to have available for me.   Fingers crossed Im not in anytime soon.