Life for everyone can be challenging. We all find the hum drum of daily living difficult at some point in our lives. When I was studying at university right out of high school gosh I thought life was difficult, when in fact it was actually pretty easy and straightforward. A lot of water has gone under the bridge since then my goodness. I’m married, have children, grandchildren, have enjoyed happy times, went through some sad experiences, proudly gained my PhD, and most definitely feel loved. I feel I was brought up fairly well and I have a glass full attitude to life and always try and look on the bright side. On meeting someone for the first time I treat them as a genius and work backwards and always have a “book and cover policy” – you never know what goes on behind closed doors or what is hiding behind that lovely smile. Although I am fairly level headed human and like the lion I am feel I can deal with anything, nothing prepared me for the day I went into the consultation room to be told I had carcinoid syndrome and it was incurable. Am I angry at the carcinoid syndrome diagnosis?
When I heard the words incurable, I first felt like I hit a brick wall. My stomach churned, after a few moments of the conversation with the consultant that day the remainIng words were not communicating with my ears and the journey home was a blur. But as time went on, getting medical treatments, ongoing management of my incurable condition. Surgery to get a gastrostomy feed. I decided to use my writing to promote awareness of Net cancer and carcinoid syndrome. I find writing helps me get through the day, it helps me relax, encourages me to take photographs, I read about other subjects. All in all, my mind gets flooded with new information and I totally enjoy being creative looking at life from a different angle. I found a way to deal with my illness. At first yes I felt rather upset and confused now I am not annoyed or angry at all. I believe getting a diagnosis has given me the coping mechanism; it has made me the person I am today. I have learnt what is important, especially things like keeping in touch with people, showing emotion and saying I love you.
It’s Monday morning like no other for most people. As I look out of my south facing cottage window I see grey clouds circling above the Lammermuir hills, on first glance its a bleak outlook. My telephone rings and anyone that knows me will guess that I am then preoccupied for at least an hour. Back to what I enjoy; I greedily set up my three apple devices with devoted labradors at my feet. As I lift my head to pick up a book I looked out of my ‘favourite view’ window. Was that a glimmer of sunshine trying to get through? As Bob Hope once said about Scotland it’s the only country he ever came to where he experienced 4 seasons not just in one day but in one hour. My yes, it was the clouds had lightened and the sun was beginning to show face. What looked like was going to be a rainy cold blustery day was turning out to be a fine day, perhaps not the best however one with promise and prospects, what more can you ask. Today is Monday 28th February 2022, today is Rare Disease Day.
I like to believe that the future for Rare Disease is parallel to today’s weather. One with good prospects and promise with a ray of sunshine to keep that frown upside down and remind us to smile each and everyday.
Living with a rare disease for most affects not only the person with the disease but those around them, whether they are family, friends or work colleagues. On getting a diagnosis, for many it is a life changing situation. Living with or getting diagnosed can be extremely hard to live with; physically, emotionally and financially. Some only get a very short life span. Others have many years of life and have to learn to manage. One big thing in common is many rare diseases are chronic. It isn’t always easy admitting you find life a struggle. However there are charities, hospital groups, clubs, various volunteer groups, etc and great deal of people affected benefit from support organisations; someone to talk to, somewhere that really understands, respite, etc, etc.
So what is a rare disease? 1 in 17 of us world wide will be affected by a rare disease at some time in our life. Carcinoid Syndrome is one of them. Huntington’s Disease,is a rare disease another is Cystic Fibrosis. The majority of rare diseases are chronic, progressive and genetic not curable. Only manageable to an extent. Living with a rare disease can feel very isolating and scary. Globally between 3.5% and 5.9% of the world population is affected with a rare disease. There are six thousand different diseases affecting 300 million people. In the UK, it is estimated that there are 3.5 million people affected by a rare disease.
Many patients with rare disease’s consult with more than one specialist. Often as many as five. Going to various outpatient clinics can take its toll not only on the patient but on the people around. The care at the hospital in the UK is free yes, however the patient has to get to the hospital for treatment, blood tests, scans, etc. Fuel in transport, or cost of public transport, the cost of eating out, etc etc. Then there is the physical cost to the patient. I was speaking with a consultant the other day and she spoke rather concerned that one of her young patients said she had 52 clinic appointments in the year. Equating to one per week. Yes she has an incurable rare disease, however she is also a student, desperate to pass her exams. The doctor sounded genuinely concerned for her patient; saying she thought this could affect the patient’s wellbeing on top of their condition.
What is Rare Disease Day? This is a world wide event for one day – always the last day in February. Celebrating Rare Disease’s. Promoting awareness. Sharing videos and experiences across the world. The aim of the day is to raise awareness, spread hope and solidarity and bring the worldwide community together. Hoping to improve access to treatment and medical representation for people and those affected with rare diseases.
It is go good to see so many people pull together for such an event globally. When these people are at home feeling isolated or trying to go out and are anxious they need to get their “big person” pants on. Life can be so difficult and cruel. It’s heartening to see so many people affected by rare diseases with glass half full attitudes. Medical staff fully behind them and organisations supporting in what needs done. Let’s hope for the day that we can get some treatment and you never know maybe even a cure for some of the diseases. However, for now let us manage the best we can.
After a day of swithering whether I should accompany my hubby and some of our good friends from https:www.dunedinhog.com on a mates run. I hadn’t had the best of days, had to phone my medic team and get one of them to come in on an emergency. After only two weeks my gastrostomy tube had to get changed. Believe me it wasn’t a pleasant experience. I rested all afternoon then decided the company of good pals and some fresh air would do me the world of good. So at 5pm on the Friday evening I got myself into my bike gear all ready for a Harley Davidson run in The Scottish Borders.
My hubby Steve spoke to our chum Scott and put it to him “show us your ride” Steve and Scott messaged each other back and forth. Scott and his wife Shirley lead a scenic route. We met up with them in Galashiels. The drive from our place in Boggs Holdings, Pencaitland to Galashiels was a reminiscent one. We took the A6093 to the junction of the A68 and turned left, took the first right and headed towards Gorebridge, passed the entrance of Vogrie Country Park, my mind took me back to many walks I went on with my hubby, children and dogs, such happy times we had, I now hear lovely stories from my grandchildren when they have visited and played at the park and walked the dog. We made our way along the narrow twisty road towards Borthwick, passed Borthwick Castle, where Mary Queen of Scots sought sanctuary in June 1567 when she learned Scottish nobles planned to capture her. You can find out more about Borthwick Castle at https://www.borthwickcastle.com I was happy to drive pass our sons old primary school, Borthwick Primary which is now a private residence. We drove up the twisty steep incline to North Middleton.
From North Middleton we took the A7 and headed south. Our destination was to meet up with our group in Galashiels. The drive down was wonderful. We enjoyed a somewhat familiar drive, one we did regularly several years ago, what seems like in another lifetime. The scenery was beautiful, typical of Scottish countryside, as I looked ahead clouds rolling in the blue sky, many shades of green on the hillside; home to the happy skipping sheep, bleeting as we drove passed them. The river looked inviting as we drove by, I could have asked Steve to stop at the side of the road and took a paddle. As we drove down the A7 we rode through Falahill, Fountainhall, Torquhan, Stow, Torsconce, Buckholm and finally arriving at Galashiels.
For the hungry horace’s we met up in Macdonalds car park. For those who wanted could join an organised social distance queue for food or got to the loo. Whilst the others ate, went to the loo and blethered. I sat on the ground in the car park and caught my breath. I don’t mind admitting I was feeling a tad wobbly when I reached my milestone, Galashiels and I could have done with going home. The ride from ours to Gala was more than enough for my body on this particular day. However, my want and desire to finish the route, be out with our friends and enjoy the time on the fatboy outweighed how I was feeling. Despite feeling my heart beating so fast that I thought it was going to jump out of my shirt. And the worry that my blood sugar wouldn’t keep up all the way round despite having my gastrostomy tube running. My body ached. Feed checked, all sorted and feeling better. After the rest, I took photos of the others and their bikes. When we were ready we took the A7 and headed towards Hawick.
Scott took the lead with wife Shirley in her Harley Davidson behind him, both Borders folk made it ideal for them to choose the route. I was looking forward to this run. Will it live up to my expectations? I hope so…….
We drove 6 miles from Hawick, Scott took us to the picturesque village of Bonchester Bridge, lying on the Rule Water. Leaving the delightful village the route did not disappoint and the scenery just kept on giving as we headed over towards the A68 and rode to the border view point.
The Scotland England Border on the A68 is an excellent opportunity to stop, take a break and a wee photo. We all had a great time; even had time for The Vickie Green Challenge.
We stopped for a while at The Border View Point, giving us a good rest point as well as the opportunity to take photographs. Then had an enjoyable drive down to Jedburgh. Memories came flashing into my mind as we drove through. Passing the rugby ground, seeing the large posts, wonderful recollection of my son Stuart playing second row for Haddington. The sheer delight of Haddington under 16’s winning the cup. What a day that was. Such a great feeling standing at the sidelines cheering the team on, screaming at the top of your voice. Regardless of the weather, rain, hail or shine. Continuing our journey we made our way to St Boswells, turned right, opposite The Buccleuch Arms. Lead by Scott we climbed up a beautiful steep road with some unpredictable twists and turns. Drove a route with amazing trees, lush grass and beautiful plantation. We arrived at Scots View; one of the favourite views of not only Sir Walter Scott, but of my parents. Looking over the valley of the river tweed I could clearly see why. It is not only a beautiful view, it is calming and relaxing. I felt quite at one with myself soaking in the atmosphere. My parents took my sons Tony & Stuart and their cousins Lindsay & Robert here, as well as many other places. However, Scots View is particularly memorable not only for the view, but it was the day my son Tony fainted.
After spending time at Scots View we took the back road and headed to Lauder. Thereafter, our wonderful hosts, Scott and Shirley headed back to their home in Ancrum. The Edinburgh based folks headed towards auld reekie and Steve and I made our way to Pencaitland. We went straight down the A68 turned right signposted Haddington on the A6093, through Pencaitland till we reached our home in Boggs Holdings. Buddy and Bella were pleased to see us, as I was to see them. As much as I enjoyed the ride it was good to get my feet up. I had a beautiful evening with lovely people. It’s so nice to be tired for a reason. It’s good to meet up with others and see places I haven’t seen in a while, especially ones that provoke memories. Looking forward to the next run.
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.
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.
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.
Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube. After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage. It is apparent that the surrounding area is never going to totally heal. The health professionals have tried their best. I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings. My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore. After the trial and error of creams the best one and the one to stay is the cavilon lollipops. They act as a barrier, and its a wonderful life saver I can tell you. As for the dressings, well many have been tried and tested. At one point I looked like I had been shot. I was covered from my breasts to my waist. The nurse on the ward thought it best to keep it all sealed. This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast, dressings, and good old fashioned crepe bandage. The dressing that worked was the foam dressing. A hole was cut in the dressing and it was wrapped round my peg. The only trouble with this is the amount I leak out. The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.
My nurse, Evelyn, that comes in and changes my dressing at home noticed this. Evelyn is a dog with a bone. One day she came in with a booklet and a different dressing.
Do you fancy giving this a go? She asked me. Can only give it a try was my answer.
So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply it. This dressing is designed to absorb the leakage. And guess what – it does it so well 🙂 I have even noticed a reduction in the odour. The combination of the barrier and the new dressings, my skin is much improved. Its far from perfect and it will always leak. But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful. Cant see me shifting from the Keramax dressings in a hurry. And as for my nurse well she is a star.
Well today its my birthday. I am half a century – the big 50. Many folk hide their age, dread being fifty and pretend their younger than they are. Me, I’m happy to be here. I feel privileged to say I have hit such a milestone. My fortieth decade was a mixed one. There was many happy events, lots of love and laughter which keeps me going. However, I also had to face a few difficult life challenging times which were so difficult.
Happy to get up the castle
I had many occasions to have cause for celebration. Both my sons attended university in this decade furthered their education. Our delightful labradors, Buddy and Bella came into our lives; the unconditional love they give is amazing, I really can’t imagine my life without the hairy beasties. We delivered a litter of puppies from them, and have kept in touch with puppies and owners. Now made some lovely friends. Some wonderful children have been born in the last ten years who are really close to my heart. There have been a few very happy weddings. I have mad many new friends. Need I go on. Life is precious and for living, it is all too easy to get bogged down with our problems. On a personal level Steve and I are as much in love as we were when we were teenagers. I believe this is my weapon – Love.
The one thing I am certain is in the last ten years I felt loved. The first five years were very difficult, I suddenly lost 3 stone in weight, felt very ill, and no-one seemed to know why was wrong with me. It took a while to get my health situation sorted out, but with the love of Steve, the boys and my parents I felt secure. I’ve had a few hairy moments been in hospital with septicaemia for 7 weeks, and boy was that scary. Now got my gastrostomy tube fitted. Life isn’t always easy with a stoma. Ive been admitted with several infections. However, its much better than it was, I have a fantastic medical team and nurses that come to the house which is fantastic. And I’m still here to tell the tale and thats whats important.
The second half of my forties were slightly more challenging than the first emotionally. Amongst other things: A very close uncle died, my youngest son had extensive brain surgery, my Mum died, my eldest son had meningitis, hubby had eye surgery for detached retina. But you know what we got through it all. The boys are doing well. Steve still has problems, and only had surgery last week again, but the brave bugger is dealing with it the only way he knows – full of courage – like a lion. It will be three years on the 9th August that Mum passed. I miss her every day. We had one of those relationships that we spoke or text every day. Mum wouldn’t want me moping around. She was a great character, a beautiful woman that I looked up to and admired.
One day in the consulting room at the hospital my professor handed me a card. It was for the NET Tumour Support Group that I now meet regularly with. . We have all became great friends. Sadly, one of the friends that I was very fond of passed away last year. However, I would rather have spent time with her, laughed, cried, etc, even for one year and then felt the pain of her loss than not have met her at all. we all meet regularly every month and have a great time. Its not doom and gloom, we meet at each others house or in the pub. Partners, friends, carers go too. You can have a look at the charity’s website to see what work they do: www.taect.scot I’m looking forward to helping organise the tea party in Pencaitland in November for NET Cancer Day.
I’ve had cards delivered for my 50th birthday. Including cards from friends in the Net group which is lovely. One of my friends in the group, Barbara was very thoughtful, because my eating is restricted, she made me a flower birthday cake. I could have cried, its so beautiful.
Looking forward to spending my 50’s with Steve. Doing what I enjoy. Taking photos, writing, cuddling my labs, crafting, etc. My big aim is to get back into baking and cooking, just because I’m not eating as I did doesn’t mean I should stop what I love. I got a beautiful mixer last year and boy is it going to get its ass worked off now that I have got over that hurdle. Have a great weekend guys. After Ive finished my treatment today My hubby is taking me to The Edinburgh Festival tonight and tomorrow night. Tonight its Craig Hill, tomorrow its Nina Conti
You look great – that’s the words we all long to hear. We all want to look our best. Whether we are nipping to the supermarket, having a lazy day, or going out for dinner. The last thing I want is folk to be surprised that I look “normal”
So why is it that there are times when people say certain phrases to me that can set my tummy into turmoil and make me feel guilty for having an illness. These words are usually said in such an innocent manner and no malice is ever meant. Sometimes I can get upset by what has been said to me, regardless of how harmless the conversation is. The person paying the compliment is usually always blameless.
The conversations and body language that are directed to me are intended to be kind and gentle. A gentle hand stroking my arm and the words that first come out how are you keeping? One of the ladies in our support network group particularly doesn’t like this phrase. I have spoken to many people whilst I have been in hospital and yes they are affected by what’s said too. Certain words affect folks more than others, the word keeping was one that some found hard to deal with. I’m not quite sure why, as I say it’s always said with such niavity. Perhaps it’s because the word keeping is associated with custody and criminal. Many people with with chronic illnesses have life changing situations after their diagnosis and can often feel like a prisoner in their own home and need the help of others. Maybe this is a possibility why keeping is not liked by this person. I can’t go out on my own, and I’m very grateful for the help I get, not feeling sorry for myself – promise 😘.
Most of the time words said don’t bother me too much at all. I can put them in a box and breathe. What really drives me crazy is the tone that the conversation is spoken to me in. The very pitch can affect my mood, and hence a knock on affect on my health. Most days I will banter and have fun, if something is said in a teasing manner I will take it like water off a ducks back. However if I’m having a difficult day the slightest thing will reduce me to tears.
So why do we want to look good? – why not? I personally want to look like my old self. I want to be my husband’s wife 💕. My wonderful staff at Ninewells hospital in Dundee have specially manufactured coloured cream for my skin to put on every day. The transformation is fantastic. It covers every blemish, wrinkle, gives me a lovely colour. And it looks so natural. Once it’s on properly you wouldn’t know I had cream on. For me it takes a lot of work to look “normal” – I smear my entire body in several creams three times a day. Steve’s cousin Anna commented on how much work it was and how good the transformation the Dundee cream made – this actually made me feel good that she was so open.
The good thing about the chronic illness. It’s on the inside. We can cover it up. Put on the war paint and put on a smile 😀😀 it’s good to smile, it’s infectious. Smile and the world smiles with you. When you are all dressed and tried your hardest to look good, whether you are dressed to the nines or in a tracksuit, and have make up on or not. If I am happy I always look better. I know I am loved and this certainly makes me happy. It can be hard to look good for anyone at anytime but I will say my family and friends do make my life much better.
I love to buy and get treated to nice clothes and accessories. My favourites are Ragamuffin, Fatface, Michael kors, Pandora. My hubby, Steve is so good to me. Steve wants to treat me and make me feel good, he is the one that sees me feeling so rubbish at home. And puts up with my grumpy pants sulking moods 😂😂 – for my sake just as well he loves me.
I have had many suggestions for the name of my gastrostomy tube. I’m so grateful to everyone for all the effort that has been out in.
A fellow blogger, Elaine, has gave me a name that I’m rather struck on. The name Lavita, which means life. Rather apt. For me the tube gives me a better quality of life (when I don’t have sepsis, or any other infection that is). It provides me with my essential nutrients and vitamins – my daily steak and chips or fresh fruit salad if you get my meaning. For many people with a tube it is an essential lifeline and the only source of nourishment.