As the days are getting shorter, temperature is dropping and the amount of ideal biking days for someone like me are few and far between. I find myself having more time to sit by our beautiful open fire and being grateful that I can reflect on events over the last few months. And hopefully look forward to what the world has in store for us all as the shortest day of the year will soon be here and then the days get longer, we have a vaccine thats getting rolled out for Covid. Since April I have only been out of the house for essential visits, such as the hospital. In total, I have been out of the house a total of 9 times since April. When the restrictions were relaxed I went out with with hubby and some friends from The Dunedin Chapter, under strict social distance for a Harley-Davidson® bike ride. At the beginning of September I took the position of Editor with The Dunedin Chapter, I so enjoy writing about the motorcycles, events, editing members articles, etc. Despite the fact I love being on the Harley-Davidson® I have got to admit I have benefited from having quiet time, time for me and certainly endured More writing and less riding.
The last few months have been fairly stressful health wise. Lavita – my gastrostomy tube has been playing up. I was in utter agony with my last change. The lump on my shoulder is giving me some grief and the pain in my humerus at times is unbearable. I remember 24 years ago I was at nuclear medicine with my Dad, he wasn’t feeling well at all, and he the pain he had was eleven out of ten. The consultant said to him I can clearly see you are in a lot of pain, however you are not complaining. My Dad said to him, I just close my eyes and take myself on a journey, close out the world and try and dream it all away. It doesn’t take it all away but it helps, my Dad told him. I took this with me that day. On the days I feel I can no longer cope, I think of my Dad and his journey.
While I am on my mind journey I can relax, take time to myself. I can think about what may be in the spring. Hoping to get out on our Harley. Have the boards put on the back for my little feet for comfort for those longer rides. Get the Nikon out and take some photos of our beautiful country. As usual the medics have been looking after me; appointments that cannot be met in person have been on the telephone or video call. So I am fairly confident as and when the weather breaks and getting out and about restriction levels allow us to travel around safely I will be able to ride pillion with my hubby.
The one benefit of being at home is I have been able to write a lot more. I find pleasure in writing for myself and other companies and organisations. Working as Editor for The Dunedin Chapter Scotland HOG® #9083 I have just completed my first quarterly Newsletter. I have been humbled at the amount of caring messages from members. Lovely emails and texts saying what a great Newsletter, so kind. Working on Newsletter was hard work, working to deadlines, fitting around others, editing folks work; taking out some parts that I know they would really want in but know that I was tight for space – all in a days work for the Editor. Yes there was lots to do, it took many hours, a lot of the time it was at an hour I haven’t been used to tapping my fingers on the keyboard on my beloved Apple. However when its a subject you are passionate about, the folks sending in articles are lovely and most importantly the team you are working alongside are supportive. It makes me feel proud to be party of a warm and friendly happy Harley Family.
After my appointment at The Western General Hospital in Edinburgh my hubby was patiently waiting for me. He picked me up in the convenient pick up drop off area outside the hospital. We usually go together, however do to Covid, I was restricted to going myself. We made our way out of the hospital grounds and got ready for our Drive through Edinburgh.
As we drove along Crew Road there were works getting done and the road was closed towards orchard brae forcing us to turn left. We made our way along the road and passed the police training college, saw a couple of dogs in the field and then passed Broughton High School, I had a memory of going to the old Broughton High for health promotion talks, and remember proudly going to the police college with Arthur, when he got a commendation award; what a lovely day that was.
Driving through Stockbridge. The sun was shining, there were hanging baskets flowering beautifully outside many of the elegant Victorian and Georgian houses. This bustling vibrant area on the water of Leith is filled with speciality and charity shops, and delightful cafes and pubs. I love Stockbridge; the new town is my favourite area of Edinburgh. If I lived in Auld Reekie this is the locality I would choose to live in.
Cruising along George Street I saw the changes that were happening over time. What establishments are still here, and what has ‘disappeared’ from the high street. The Standing Order was the first building that jumped out at me. All over the world there will be many well known financial institutions that are now coffee shops, or pubs or restaurants, somewhere for folk to sit and chat. Rest their weary bones and share a story or two along with a drink.
As I headed to Southside Edinburgh, I passed a block of flats that were on a corner site in Newington area. This site used to be a Ford Garage that my sister worked in the accounts department. My friend rented a bedsit on the main road when we were at university.
Gosh Helen finished up at the Garage over 40 years ago and Jennifer rented the bedsit in the mid 1980’s. Jennifer visited me yesterday I was telling her about my journey and reminiscing, we started chatting about her accommodation hunting when she came down from Calendar to study in Edinburgh…….
Jennifer and I met at uni, we became friends the first day of term and have been stuck with each other since. Jennifer came down from Calendar and needed accommodation, the uni gave her some recommendations. She came to my parents armed with this A4 piece of paper. We were going to the addresses. My brother Albert dropped us at the first place on the list, it was near the shopping centre, he would go shopping we would view the room. Oh my goodness; the room was ok, very basic, shared facilities which werent so nice, and the room mates were less desirable. So lets just say this place was a big fat no. We tried a few other places on the uni’s recommendation. Absolutely non suitable. My Mum brought out The Scotsman. https://www.scotsman.com We looked in it, there was an ad for a Letting company in Home Street, Edinburgh.
Off we went to Home Street. We walked in to this office with a white haired lady with 2 dogs surrounded with so much paperwork. I actually felt like I was going for a seance. I can tell you Jennifer and I felt frightened, why we didn’t know. The business was ‘real’, the staff were genuine, informative and very pleasant. And they had dogs, something I especially love. I think it was just the fact that the white haired lady was rather eccentric. The room had a creepy feel. However, the lady was very kind to us, she explained what properties she had on the books and what she thought was suitable. She explained locations and terms of payment etc. She thought the room at Newington would be suitable, told us there were already some young ladies in the building and the location is lovely. Big bonus, the landlord was a really nice man. We were sold. Sounded ideal for Jen.
We made our way from Tollcross to Newington. Met by a raven headed gentleman. True to her words. The whole property was in good condition. The bedsit on the ground floor had its own kitchen, it was ideal. No sharing, no messy dishes, etc. Jennifer decided to rent it. As friends it was ideal, not too far from uni and only about 3 miles from my parents house.
Many properties have changed hands over the years and places we have got comfortable going to are no longer there. However, many of these alterations are good news and society is reaping the benefits both socially and economically. As the saying goes out with the old and in with the new.
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.
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.
So as usual life goes on, and as my half full glass is starting to waver I feel my flushing increase. As I struggle in the Wetroom with a shower, turning off the water I sit on the stool provided by my occupational therapist. I look down at my mottled feet as I struggle to get my breath. I used to get just a basic carcinoid flush – the face and neck; a red rash. However, now when I am utterly exhausted I experience a full body flush, from my toes to the top of my head and believe me it’s not pleasant. At times it coincides with palpitations. Steady thumping, loud familiar beating that I have become accustomed to. Net Cancer with carcinoid syndrome requires regular Carcinoid Syndrome Investigations.
When I last saw my NET specialist I had bloods taken and was asked to pee in the usual container for 24 hours. He telephoned me a couple of weeks later. He asked how I was feeling. I told him the truth, I am struggling some days more than usual, he said he isn’t surprised. My results are elevated , well a tad more than elevated. He recommends an early echocardiogram and a ct scan with contrast of the chest, abdomen and pelvis. I told him I’ve been having problems with the peg; the balloon bursting and the nurses putting in 20 mls of water on The Monday, the following Monday only 9 to 12 mls of water left in the balloon. He said he would get them to look around the peg site whilst in ct scanner.
Within 10 days I was seen at East Lothian Community Hospital in Haddington for my echocardiogram. Steve drove me right to the door. There was masks, hand gel and gloves provided on a desk. At the reception desk the receptionist directed me to the appropriate area. Just a very short walk down the corridor and I was there. Waiting area 3. Five minutes later a lovely radiographer called my name. She had her mask on and escorted me to the room. She asked if I had an echo before, I said I had. She explained exactly how things would go today, helped me onto and then told me how to lie on the couch, put my left arm up and hold onto the handle. This lovely lady made me feel completely relaxed. She talked me through the whole process. Despite the procedure taking around 45 minutes it was painless and actually dare I say it relaxing. Echocardiograms are a necessity for people with carcinoid syndrome. Since many of us get carcinoid heart disease.
Seven days after my echo I was at The Western General Hospital in Edinburgh for my CT. I got a letter explaining it would be best if I entered the hospital alone. Detailing exactly where to go and what would happen. When I entered the main building, again a table with gloves, gel and masks. Off I went to the desk of main X-ray. Approximately 24 inches from the reception desk there was tape as a marker to stand at. I held up my letter and the receptionist scanned it from afar. I took a seat in the spacial distance waiting area. A warm friendly face came to me with a jug of contrast. Yes you do have to drink all this I’m afraid, but you have an hour to do so. Hour passed, Jug drunk, radiographer took me to the CT area. I sat on the big blue chair. She looked at my arms, which one is better? Take your pick I said. She tried the right, got in, blood bounced back into the syringe, vein collapsed. Tried the left, nothing. I will go get someone else she said. I told her it wasn’t her fault, getting into my veins is always a problem, the phlebotomist usually uses a butterfly to take blood. Unfortunately today the cannula needed to be on the bigger side, the solution that was going through whilst I was getting my scan was going to be thick and sticky. After a second try the next radiographer finally had better luck. Time for my CT scan. Escorted to the room, the pleasant ladies assisted me on to the scanner, hooked me up and the donut did its business. The familiar voice of breathe in and hold. Then the solution going in. No matter how many times I get this scan, know this is going to happen I still have the same feeling; strange taste at the back of my throat, oh my that hot flush feeling and then the thinking that you have wet yourself. All finished. A lovely young gentleman came in the room, helped me of the scanner, escorted me out the room and took me to the waiting area. He asked if I was ok, I was shivering and pale, I explained I’m always freezing. A nurse came with a blanket and wrapped it round me. Pampered or what!! He told me I would have to sit for 15 minutes before getting my cannula out, just to make sure I was ok. I was; a jolly nurse took it out. I set up my peg feed and resumed my body back to normality.
I met my hubby at the entrance of X-ray and we made our home. When I got home I was ready to put my feet up for the day. In the evening I checked my emails, one from my net consultant checking in on me. I let him know thats the scans done. He sent a reply back. Wonderful service from our NHS. Especially during these difficult times. Many tasks have become a new normal for some. Maintaining social distance, offering masks, gel, gloves, etc and keeping everyone happy and getting things right is an extremely difficult job. For this I Thank you from the bottom of my heart. Without my district nurses, doctors, consultants, hospital staff, dieticians, occupation therapists, pharmacist etc My family and I would find life impossible.
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.
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.
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.
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.
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.
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.
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.
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.
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 – 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
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.
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.
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.
Making My Home A Haven is important to me. Sharing homemaking skills. Recipes and food. Bible Studies. This is a treasure chest of goodies. So take a seat. Have a glass of tea and enjoy. You will learn all about who I am.