Leaking gastrostomy tube

Lavita has been my lifesaver. For those who don’t know Lavita is the name of my gastrostomy feeding tube. Artificial feeding is a way of life for me; feeding tubes, syringes, dressings, huge deliveries of feed by my lovely drivers from Nutricia, etc. For the last few months I have been having a bother with my tube, my nurses have been coming in, giving the usual service, changing water in balloon, etc. However, I have had a lot of leakage (losing water from my balloon ) I have been in an awful lot of pain and three times the balloon has burst. Lavita has been a leaking gastrostomy tube.

Last week I went for a ct scan with contrast at the request of my net consultant. He is worried because my 5hiaa is elevated, I’ve lost weight, been getting a fair few infections and I haven’t been feeling well at all.

This week I have been at the hospital to see one of my consultants. He was able to speak to me about my ct scan and finally shed light on why I have been loosing water every week. And perhaps why I have been in so much pain. He asked me to get onto the couch, he Kindly helped me up, he assisted me off with my shoes, I couldn’t bend down comfortably from the couch and get my shoes off, he could see that so bent down and took my shoes off for me.

I lay flat on the couch and he said Mark requested the CT scan for a totally different reason the problem we are going to discuss and he started to explain what the radiologist reported on the CT scan. The report stated the balloon should be sitting in my stomach, however it is sitting in my jejunum. The doctor decided he would reposition it there and then. Are you ok? he said, I nodded, my tummy was aching. Just breathe in he said to me, and I will get this adjusted and make you more comfortable. He gave a very firm tug on the tube and turned it around, he pushed it into place and gently twisted it round. He pulled the disc tight up to my skin and said the tube needed to be at 4cm. And to check and adjust it several times per day. He is hoping now that he has pulled the balloon back up into my stomach that I won’t leak water any where as much as I have been. Some weeks, my nurse puts 20mls of water in when it comes to the water change there is only 7mls of water in the balloon.

My gastrostomy balloon had fallen into my jejunum.

I got myself decent, he helped me off the couch and onto the chair beside his desk. We now had time to discus what he did, how my gastrostomy tube looked on the scan and how I was feeling. How am I feeling? rubbish, hope to feel better soon….. My doctor did me a drawing of how the tube should be and how mine was when I got the scan. He told me I should get blood tests today; the nurses with a bit of a fight took my blood.

Today I got an email from my other consultant; my net specialist. The one that ordered the CT Scan. He said he was shocked when he read the report that my balloon of my gastrostomy tube was in my jejunum. He asked how I was feeling and said he was relieved that I had seen my other consultant Alan and that he had repositioned it. The prof said he is hoping that the leakage will slow down now that I have had my tube pulled up.

I feel privileged to have very caring consultants that look after me so well. Especially take time to email me out of hours, or give me a call and ask how I am. Thats what I call service.

The Drawing by my consultant

Hurrah ūüėÄ 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



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 РThe 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









Net Cancer Day

Yesterday was November 10th. On the Cancer Calendar this is World Net Cancer Day. In Edinburgh the Scottish Charity, The Ann Edgar Charitable Trust hosted a forum at The Novahotel. And what a great informative event it was.

After being offered a beautiful buffet lunch, chance to meet other patients and folk interested in nets David Drummond, chairman and partner of the late Ann Edgar opened the show with a warm welcome. We were then given presentations from great speakers:

NET specialists from throughout the UK gave up their Sunday to give presentations. Offered their expertise and answered questions to patients, families, friends and people generally interested in NETS.




Margaret Boe – The Ann Edgar Charitable Trust (TAECT) . Trustee and wife of Net Cancer Patient, Norman Boe. Margaret is retiring and handing over the baton to Priscilla Fernandez.


Margaret Boe

Katie Gibson – NET CNS at Western General Hospital, Edinburgh, Talking about patient and carer support in Scotland

Lucy Dornan – NET CNS at Beatson Oncology, Glasgow. Talking about PRRT programme in Scotland.

Lucy Dornan from Beatson talks PRRT


Nikki Jervis – NET Patient Foundation. Talking about patient wellbeing.


Nikki Jervis


Professor Mark Strachan – Endocrinologist, Net Specialist, Western General Hospital, Edinburgh. Talking about whats new in NETs.


Professor Mark Strachan

Dr Lucy Wall – Clinical Oncologist, Western General Hospital, Edinburgh. Vitamin Research Project. Results to be presented in UKINETs.

Mark Strachan and Lucy Wall set up the first NET clinic in Edinburgh 14 years ago. Fourteen years since the first Net patient walked through the doors, with a great deal of progression since then. All for the good of course.

On the way to the event I had a sneaky look at my smart phone. An Apple I Phone – I have stayed loyal to Apple, the great Steve Jobs lost his battle with NET Cancer in October 2011. As I looked at my twitter feed I saw my friend Kath had promoted awareness of the disease in her local paper. Well done girl. I can relate to the piece so well, as I am sure many people with a NET diagnosis can . If you would like to read Kath’s feature please click on the link



On entering the hotel I turned my phone off, no interruptions. However, at the coffee break I turned on my phone. A couple of messages. From each of my sons. Both checking up on their old folks and letting us know they are doing ok. One of the texts came with a photo of Granddaughter, Alexandra Рshe found her Daddy’s scalextric at our house and was loving playing with it. Knowing our boys were thinking of us warmed my heart.


Our Alexandra finds Daddy’s Scalextric


As we were packing up to leave we got in the car and I turned my phone back on. Stuart and Alexandra called to say Alexandra was going back home and we would see here Thursday. Her Wee voice echoed in our car can you hear me Granny? When I let know I could she blethered away. She said I helped my Daddy put your lights up – they are very bright. Then she said I love you Granny and I love you papa see you after nursery xxxx


10th November Approaching……

For Me November has always been a fairly memorable month. I have a brother with a birthday at the beginning of the month and a sister with a birthday at the end of the month. The last day of the November we celebrate the Patron of our country – St Andrews Day. Guy Fawkes night; 5th November is a special night on our calendar – Steve and I got engaged in 1984, what a wonderful night that was. Fireworks at my parents and then a trip to Edinburgh with Steve and some university friends.

All of these dates are still in the diary, special to me, with some others added. And now there is one anniversary date that is noted worldwide. The date is November 10th every year. Its NET Cancer Day. Aiming at promoting awareness. Folks all over the world raise awareness in different ways.

Me personally, I have organised, with the help of friends, a tea party and a music night. Both events were on the weekend of the NET Cancer Day and raised money for The Ann Edgar Charitable Trust. Three years ago I did some something myself, just simply smiled every day for 21 days and asked folks to donate something, even if it was a penny. My consultant, Prof Mark Strachan, the fantastic late Linda Story and myself did a radio interview, fairly lengthy – raising awareness two years ago. Many people have coffee days – lets talk about nets.

This year, 2019 – November 2019 is a Sunday and I’m looking forward to going to The NET Forum organised by The Ann Edgar Charitable Trust in Edinburgh. There will be talks on offer from Net Specialists; Consultant, oncologist, Net Nurse. Charity Trustees. Information will include PRRT Information, Patient and Carer Support, whats New in Nets?, Relaxation.

Forums allow others to get together, whether its other patients, their family or friends, health professionals and people generally interested in finding out about NET Cancer. You get a chance to ask questions about symptoms, treatments, etc, and meet other people with the same rare condition. Its absolutely wonderful that health professionals are willing to give up their Sunday to share this time with us folks that want to go to the forum. Its great to see passion in the doctors and nurses outside the hospital. It makes me very proud and confident in our NHS.

For anyone thats interested in finding out more about The Ann Edgar Trust. You can look them up, at http://www.taect.scot They really are a good support network, our monthly net natter meet ups, chat on facebook. And at times we get together and do something together outwith the meeting. It really does help turn that frown upside down.

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.

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.




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.


  • Scales on white background. Isolated 3D image

Friendship: that stands the test of time

IMG_0307           Friends.  We all have them.  What does

friendship mean to¬†you? ¬†¬†How do you define a good friend? ¬†I guess we would all have different answers. What’s important to me does not necessarily sit high in the rankings for you. ¬†We also have friends and ‘friends’. ¬†There are those that will be by our side for the rest of our days and there are work chums, social meet up buddies etc. ¬†There are friends we will never meet in person; social media hook ups, pen pals. ¬†We can build up great relationships and share common ground, learn all about their country, etc. ¬†The support that can be gained from a friend that you will never meet in person can be invaluable. ¬† The fellow patients and carers/friends/family that I have met through the support network charity The Ann Edgar Charitable Trust has been just fantastic. ¬†We meet , talk about all sorts, support each other and friendships have developed. ¬†To be honest I never thought I was one for sitting in a room full of sick folk, that want to chat about their condition, but actually making the effort to go out on a chilly evening, have a blether and a cuppa and most of the time a jolly good laugh. I usually always go home in a much better frame of mind and feeling a whole lot better than when I woke up that morning.


For those of you that have read my blog you will know that family is the most important thing in my life. ¬†I’m the youngest of five. ¬†The closest to me is Hazel with a 6 year age gap. ¬†The other 4 are closer tother in age. ¬†Mum and I developed a great friendship, from a young age she took great interest in activities at school etc. ¬†I remember running home from school eager to tell her all about my day. ¬†Mum and I spoke every day, even when I got married. ¬†Perhaps it was just a short phone call, but the blether would take place non the less. ¬†Mum died 5 years ago there is not a day that goes by that I don’t think of her and miss that conversation.




I have talked in previous blog posts about friends. ¬†As someone who can no longer drive and with numerous problems such as fatigue, hypos, pain, etc. ¬†Friendship is extremely important. ¬†Now as adults, I’m no longer that kid hanging on to my sister Hazel’s skirt and we are great pals with wonderful support. ¬†Support and help has came in different ways from different ways . ¬†Two friends that I value, really care about and have been particularly helpful over the last year are Sally and Louise. ¬†My ¬†husband, Steve, is ¬†the best friend you could ask for. ¬†We spend a lot of time together and never seem to tire of each others company.

There is a pal that I haven’t spoken about in my blogs. ¬†On leaving high school I decided to go to university in Edinburgh. ¬†on my first day I met this quiet country girl from Callendar. ¬†We hit it off instantly. ¬†At the end of year one I decided to leave auld reekie and study in the city of discovery, Dundee. ¬†This in no way hampered our friendship, we remained friends through studying in different cities, marriage, the birth of both of us having our sons. ¬†Both of us are god mother to our first born. ¬†Tony now 30 and Scott in his 20’s, my how time has flown. ¬†Jennifer was sitting on my sofa a couple of weeks ago on a Sunday afternoon chatting away with Steve and I. ¬†Just the three of us, it could have been 34 years ago, with the exception of some of the conversation subjects. ¬†Amongst other things, We had the 4 lads to talk about, Tony, Stuart, Scott and Cameron. ¬† Over the years Jen has been a great loyal friend. ¬†Someone I can trust, share a problem or a secret with. ¬†In the early 1990’s when I needed breast surgery, Jennifer came early in the morning to give me a lift to the hospital, physical and emotional support before the op, just what a pal needs. While my poor hubby was rushing around with two youngsters. ¬†When Steve was getting his radiotherapy a trip to ¬†the country club for one week was organised by Jennifer, really appreciated it. ¬†Since this diagnosis, Jen has been a great pal; known her place. ¬†Text enough, but not too much. ¬†Visited when I’ve been ‘ill’ in hospital. ¬†visited us at home but kept away when she thought we need space. ¬† You know your pal is your pal when you don’t feel you have to put on a face, or tidy up for them visiting. ¬†You aren’t embarrassed if you can’t afford the bill and you can tell them. ¬†We are made of similar cloth and I’m definitely not afraid to say anything in front of Jennifer. ¬†Still a pal after all these years. ¬†Thanks.

A visit to cardiology: how low is too low?

Since my recent hospital admission the chest niggles I have been experiencing over the last couple of years have been somewhat more problematic.    So an outpatient appointment with the lovely Dr Denvir at The Western General on Wednesday afternoon was arranged.  Steve accompanied me, even though it was a hospital visit, as usual it was lovely to spend time just the two of us.


Got there with 10 minutes to spare Рtime for a quick pee, a plenty of time left over for walking to the clinic, getting checked in and taking seat in the not too crowded waiting room.  No sooner was my bum on the seat and my name shouted.  Weight, blood pressure and ECG all done before I saw the doctor. I took a seat back beside Steve and expected to wait quite a while.

Less than 10 minutes later Dr Denvir called on me. ¬†Steve and I entered his consultation room. ¬†He was wonderful gave us plenty of time to talk and ask questions, he explained everything in detail. ¬†We discussed in depth the pain I get in my chest, how often, how I feel, etc. ¬†I was telling him how at times the weight on my chest feels so heavy, other times the pain is worse, and my mouth gets very dry and then the saliva runs down my gums, I need to sit on the floor and wait on the pain passing. I feel very breathless. ¬†It can take 15 minutes to go away. ¬†He listened to my heart, had one of those poker faces – he didn’t have any kind of expression that would shout out something instantly to you, ¬†and he did not make any sounds; no umming or ahhing, while he was examining me. ¬†There was no guessing. ¬† In a way it was reassuring. ¬†He made me feel at ease. ¬† He rolled up my trouser legs and said¬†my your feet are very cold.

Steve told him I wear an apple watch, and told him about the heart app. ¬†And asked how low should your heart rate go down to. ¬†Dr Denvir asked why. ¬†Steve told him I wasn’t looking too good so we looked at my watch to see what my heart rate was sitting at. ¬†My heart rate was 18 beats per minute. ¬†He looked at us, ¬†well gadgets such as apple watches¬†aren’t always exactly accurate, however that is low. ¬†He went on to say,¬† they are sometimes 3 or 4 units out.

After our lengthy discussion, Dr Denvir has decided the best plan of action if for me to use a GTN spray when I get the pain.  He also sent me for an echocardiogram that day.  I got my heart scan on the Wednesday, so he could see what was going on.  He says that he believes that the problems are coming from my carcinoid syndrome.  He wants to see me  in 4 months, however if I feel worse before then give his secretary a phone and he will see me sooner.

As we were walking to the car, ¬†I said to Steve he was very thorough and very nice; I like¬†him, Yes, Steve said to me, but he didn’t say what was too low for a heart rate for normal.¬†

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,¬†I¬†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.






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.


The Tattoo

Folks have been inking their bodies for much longer than anyone can imagine. ¬†The oldest discovery of tattooed human skin to date is found on the body of √Ėtzi the Iceman, dating to between 3370 and 3100 BC. ¬†Today many people get a tattoo in celebration of the birth of their child, remembrance of a loved one, and of course expression of art. ¬†Me myself, I have never been attracted to the idea of tattoos in the slightest on myself, however, I have no objection to anyone else having artwork on their skin. ¬†In fact I rather admire the work the tattoo artist work does. ¬†The first male love of my life, my Dad has one tattoo; he got it when he was in the army, it has a thistle on it and the name of my mother on it. ¬†I used to kiss it and look at it lovingly and rub his arm and think to myself if someone loves me like my daddy loves my mummy I will be one lucky lady. ¬†My And yes people for the record this has happened. ¬† My hubby does have three small blue tattoos on his tummy, they are markers the radiotherapy he underwent for his testicular cancer. ¬†In 1996 this is the way they set up the simulation and marked the skin and the patient is left with permanent reminder. ¬†Mum and Dad were married for 60 years before Mum died, Steve and I have been married since 1986, following in their footsteps; happy with that.

Both of my brothers, Albert and Brian have tattoos, and my sister Helen has a tattoo.  After my our Mother passed away.  Albert had an image of Mum on his arm.  Helen got a tattoo in remembrance of Mum too.  We all cope in different ways with death and honouring loved ones.

I have a few friends who particularly liked to express themselves one way or another.  Whether it is eclectic dress, many colour hair changing, piercings, and the main discussion of this post getting a tattoo or five.

One of my friends particularly likes to get tattoos. ¬†Louise is a very close friend who has became one of the family. ¬†Lou and Keith, got one of Buddy and Bella’s pups from the first litter, he is the image of Buddy, they call him Gunner. ¬†When the second litter came along goes without saying another puppy had to join their household. ¬†Harris, now one year old may look like his Daddy, but majority of his characteristics are of his Mummy, Bella. ¬†Lou, has been wonderful over the last three years, visits plentiful. ¬†Giving lifts to hospitals. ¬†Helping with fundraisers for Scotland’s Net Cancer Charity – The Ann Edgar Charitable Trust. ¬†What fun we had at The Tea Party and The Music For Nets Night.

Lou is a busy lady, but if she says she is going to help – I can guarantee you she will be there. ¬†The one thing I found harder than anything else was asking for help. ¬†When I had to give up driving the reliance on getting a lift is essential. ¬†The spontaneous hypoglycaemia and exhaustion means I like to plan outings in advance. ¬†Not living on a bus route isn’t ideal. ¬†But Ive got to admit, car travel is usually the best form of transport. So asking for help….. with Lou, you don’t need to ask. ¬† For Many things, hubby Steve and I go together. ¬†Both our sons, Tony and Stuart assist as and when needed. ¬†My sister hazel helps out when she can too, which really lightens the load.

Lou messaged ¬†me one morning Ive got something I want to show you. ¬†Its a present. ¬†But its only for you to see. ¬†I really hope you like it. ¬†I asked if she liked it. ¬†She answered, oh i’m pleased with it. ¬†Left me a tad bamboozled and yet looking forward, as always to her visit.

Later that morning In comes the smiling face, Buddy and Bella run up the long hall and cover our guest in a mountain of blonde hair while dutifully competing for a slobbery snog. ¬†The kettle goes on as always. ¬†I wait in anticipation for the ‘surprise’. ¬† As I bring through the teas and coffee Lou takes off her sweater for the unveiling. ¬† ¬†As I catch a glimpse of what I can see on her arm I almost drop the cup. ¬†On her arm she has had a tattoo. ¬†And what is it? ¬†A Zebra. ¬†I see her lips move, I can hear the words come out in an almost muffled way, ¬†I got this for you. ¬†For the first time in my life I can almost say¬†I have a tattoo. ¬†My heart skips a beat and brings a tear to my eye. ¬†I had no inkling, what a lovely thing to do for me. ¬†And to raise awareness for net cancer. ¬†Thanks Lou.


Why did she chose the Zebra?

In medicine, the term ‚Äúzebra‚ÄĚ is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers. ‚ÄúIf you hear hoofbeats, think horses, not zebras.‚ÄĚ … This because in the medical community the term zebra is universally used to reference a rare disease or condition.

You can find out much more about neuroendocrine tumours, net cancers. ¬†And particular support in Scotland by visiting Scotland’s Net charity. ¬†This charity was set up by my consultant and a patient, ¬†at Edinburgh’s Western General Hospital. ¬†Her name was Ann Edgar. ¬†The charity can be found at http://www.taect.scot