It’s the 10th of November, and for us Zebras, it marks the annual Net Cancer Day, which is celebrated worldwide. This Sunday is important for people. Remembrance Sunday gives time to reflect on many ways to commemorate the contribution of British and Commonwealth military and civilian servicemen and women in the two World Wars and later conflicts. This zebra had a lovely Sunday, spending Net Cancer Day in Church.
I had the privilege of attending the service at Pencaitland Church, where the service began with a 2-minute silence. We heard a tribute to those who served by not one but two ministers, Rev Andrew Dick and Rev John Hunter helped all commemorate respectfully. The busy church was decorated with vases of bright red poppies. The community choir sang two beautiful songs. It was so lovely to see youngsters in the church, filling the rows were brownies, guides and cubs.
The church was a warm, inviting place, with big singing voices. I was heartened to see the interaction between the minister and the children during the service. He chatted about the significance of the poppy and the colour, walked over to where the children were sitting and asked a couple of questions, they keenly put their arms in the air and answered.
As the service came to a close we were invited for a cuppa, for those who were able we walked to the memorial. The youth groups proudly carried their flags, walked to the memorial and waited their turn to lay their wreath.
It was such a lovely day. Pencaitland did themselves proud.
As I sang in the church, I needed no reminding of how lucky I was to be there. The journey of carcinoid syndrome is far from easy. When I was first told, “It’s incurable” – I felt like I had hit a wall. However, once realisation kicked in, I have come to understand what is important to me. I’m the lucky one and have learned to take every day as it comes, life is for living.
Life isn’t easy, and I don’t always feel on top of the world. Stomas, peg feeding, and fortnightly treatment are all a way of life. And my goodness, please don’t mention the hypos, my ever-intrusive Abbot App keeps me on the right track. Whilst I have a different journey from what I planned, I see it as a turn in the road I now need to take and be grateful for all the help on the way, including the relaxation provided spending net cancer day in church.
If you want to look at or buy prints, country clothes, gifts, wellies, our lovable Elf on the Shelf, or some quality Christmas perfume for a loved one, or grab yourself a bargain at the clearance warehouse, Click on any of the images, and they will take you directly to the safe sites.
Today is Net Cancer Day. November 10th is the annual awareness day for Net Cancer. So many people wait for a long time for a diagnosis. Go back and forth to their doctors with symptoms and get told it is irritable bowel or something else other than the actual cancer. When Doctors are taught ‘when you hear hoofbeats, think horses not zebras,’ meaning a doctor should first think about what is a more common—and potentially more likely—diagnosis. Net Cancer and Carcinoid Syndrome is rare hence not the first thing the doctor looks for. Awareness needs to be raised for this cancer. Today is NET Cancer Day and the hope that the message gets around the world – raising awareness of this cancer.
Since I was a young child I have rode on motorcycles. The noise of the bike engines, the smell of exhaust fumes. Getting caught in the rain, remembering when travelling on a bike you can only carry small amounts. Familiar helmet flat hair. Years before health and safety set in; I would sit in front of my brother with my legs wrapped around the tank at 4 years of age and have a little ride on his motorcycle. Oh what wonderful memories. My first ride on a Harley-Davidson®, I would have been 13 years of age and on the back of a family friend. We called him Tam Harley. Steve and I have been riding together since we were 17. Started on a Suzuki, when we got married we had a Honda, we have had Kawasaki’s and BMW’s and now 39 years later since biking together we are our third Harley-Davidson®. For us Harley-Davidson riders the last weekend in August is a special one. We attend the fabulous bike rally in Aviemore Thunder in the glens.
As a child growing up bikes were prominent. The rally Thunder in the glens (TITG) hosted by Scottish HOG® Chapter Dunedin #9083. The rally is in Aviemore Scotland. For me this place is a very special, growing up I visited this town often and went skiing, wild swimming, hillwalking. Had so much fun skiing down those glistening white slopes. My heart beating so fast whilst I was racing downhill wishing I could beat the clock. Once again for me Aviemore brings passion, warmth exhilaration. The four seasons in an hour hasn’t changed. I have merely switched my walking or skiing clothing for biking gear and layer up and strip off as necessary. With the exception of Friday we are certainly blessed with warm and sunny weather for bank holiday weekend weather for Scotland. It was so lovely to go around in a t-shirt on Saturday after the mass ride out. And when we were up the mountains on Sunday the sun was shining. Thunder in the glens at its best.
The Three thousand sell out three day rally is in its 24th year. The mass ride out on the Saturday gets a great deal of participants on the pavement, in their gardens along the route, in the fields, etc. Families waving, smiling children. It is a happy day for many. The Sunday ride up the Cairngorm mountain is an emotional one for me, it brings back many happy memories of my skiing days. As well as a very sad occasion when I lost a friend on the mountain. The great thing about being able to sit on the back of the bike is you can sit and take in the view, which no one can deny on these routes is a beautiful one. And you can relax and think of all that has gone by over the years. The Sunday afternoon at the rally site there were charity rides. Where volunteers were giving rides around the site on their Harley-Davidson for a donation to charity. In the evenings there was an absolutely amazing choice of live music to choose from.
As well as my hubby being the Safety Officer. This year on the Mass Ride Out Steve was a road Marshall it gave me a chance to take photos when we were at the junction. I got a super opportunity to take photos of riders, some with their flags flying high, others waving and smiling.
While up at the rally you can stay on site, stay in a Macdonald Hotel or camp. Or choose to stay somewhere else and travel to the site. Whatever you choose you are usually guaranteed to have a super time. If you are away and want to listen to something on your phone, I found the perfect item; its one of the World’s Smallest Alexa Built-in Waterproof Mini speakers You can buy it from Amazon. You connect it to your phone, listen to it anywhere, anytime.
2023 will be the 25th anniversary will you be there?
The next event I am looking forward to is Halloween. Need to get some decorations. An ideal place is here https://giftdelivery.co.uk/?ref=DrElizabeth or at Pomchick -Why don’t you have a look? You never know you may find something you like, treat yourself or someone you love.
Safety is paramount. Make sure the battery on your vehicle is in good order. The battery guys have great deals – check them out.
Absolutely great gift I will be buying next on my list is from Perfume UK
Have a look on this website. These products are fantastic. Earhubs.
The summer has been fairly kind to bikers this 2022 in Scotland. A great many dry sunny days and even on the cloudier days the sun has made an appearance on several occasions. For many friends they have been attending bike rallies, going off on super runs. No matter if it is long or short just the getting out for a while whether it is with a group of mates or a solo run. That feeling of freedom with not a care in the world and to cap it all the fabulous scenery that our country has to offer is most definitely worth taking to the road for. However I have had a medical issue with my gastrostomy tube and wasn’t feeling too great at the start of the season. Not like me at all but I welcomed my regular visit to one of my consultants. We had a long chat and it was decided I would get my lifesaving rig removed and a further procedure performed in hospital. Once this is done hoping I will be back on the Harley-Davidson® in no time.
True to his word I faced 13 medical professionals in the operating theatre just short of 4 weeks later. Getting the new tube fitted was most definitely daunting. The staff that look after me are absolutely amazing and when my heart rate dropped extremely low that the alarms were ringing they all remained so calm. Quietly I could here the radiologist say Elizabeth’s lips and feet are a lovely shade of blue. A nurse came and held my hand reassuringly and gently put a foil blanket over, ‘you are a tad cold’ she said and then continued to massage my feet. Once it was over and I was back sitting up and eager to go home one of the nurses that worked in London introduced me to a fabulous new dressing for around my tube. She gave me a pretty floral one and told me I could purchase them online. They are called G-tube dressings and are washable. Fabulous.
I got the talk about taking this easy when I got home. I so have to admit I never anticipated how long it would take for me to feel like ME. But what I can say is 4 weeks after normality started to set in. Since I have had it done I’ve enjoyed riding pillion three times;l. Gosh the relief I can have my feed running and it isn’t leaking out of me. Or more importantly the balloon can no longer explode inside my tummy. What a relief. I enjoy plenty of relaxation time; meditation and wellbeing top of the list. And of course a lot of reading snuggled into my beautiful labradors. As well as picking up a book and sifting through the pages which I so enjoy I enjoyed many books on Audible – Amazon do super deals including the first three months for 99p. This is one of the best and most used subscriptions I have taken on. If you enjoy reading and audio books you will absolutely love Audible If you don’t have Amazon Prime, it is worth joining. I wouldn’t be without it. Orders delivered next day, music, videos, etc. Superb prices. Fabulous.
The runs are very different, the first was just Steve and I tottering around our own area on my birthday on the 6th of August. We enjoy touring the Glide a little East Lothian Route, starting and finishing in Pencaitland. Taking in East Saltoun, Gifford and Haddington. The second was a ride to Stirling to meet up with some members from The Dunedin Chapter. A quick hop on the A1; stopped at Elginhaugh to meet up with Deke and then onto the bypass, joined and rode up the M9. A natter with fellow bikers and then back home. And finally a third run to Gullane to return granddaughters school bags.
The runs were enjoyable, the first most certainly very scenic and enjoyable for pillion view. Riding along single lane country roads – so easy on the eye. Chocolate box houses, overhung trees, lambs running in the fields. However on the ride to Stirling the smooth run up the dual carriageway of the A1 with the forth to my right. A perfect clear view of fife and the only distraction was the crops in the fields as they swayed gracefully and rhythmically as if they were dancing in time. The Sunday run to Gullane was a beautiful one. Living in East Lothian it is easy to take for granted such beauty; riding through the championship golf course I watch the golfers enjoy their activities and then take in the quality and beauty of the course. The greens looking in super shape. The course comprises of many shades of green and I think of my parents and the discussion we had many years ago as we looked at a globe and as a child I asked what is Gods colour Blue or Green.
These runs are in preparation to go to Aviemore with Steve. This year in Aviemore we will see many people with motorcycles, especially Harley-Davidsons® It will be lovely to go into the hive of activity. I never once thought when I was up in Aviemore every other week skiing, climbing and endlessly hill walking over a duration of many years would I be a granny riding pillion on a Harley-Davidson®.
I have been looking at books – quite fancy treating us to this one; Britain for Bikers
As treatments are started we struggle to find enough time. The patient population exists, it is hoped that awareness is increased of individuals, families and friends. The one thing that is always the upmost priority is health. For medical science to progress, people to get better treatments, hopefully find cures or at least a better or longer life span for a debilitating health chronic disease. We need to conduct gene therapy programs or clinical trials. Clinical tests give people hope; delivering the right information and having an impact on quality of life. Some clinical trials have placebos. what’s the cost of a placebo?
A great number of participants feel valued when working together in gene therapy programs and clinical trials. On asking some patients that have taken part in trials they have said “being part of a trial was a real privilege”
Some programs/trials are the first and only one of their kind. Where there is no cure, only treatment available.
One patient who has an extremely rare disease and is also a charity trustee said ” being part of the trial is important, not only does it make my life better but it can help with the lives of others. People with the same condition can benefit. As a trustee, I hope to encourage other patients to take part, offer advice and information”
Trials come in all shapes and sizes. Run for varying lengths and need differing amounts of volunteers. However they all need to have rules, legislation, outcomes, statistics. It is extremely important the trials are carefully monitored and measured. We get accurate results and truthful information. This determines whether the trial is a success or not. Did it work? Was the drug getting to the target? On setting up the trial decisions have to be made how is has to be run. Yes people have to get recruited. At times recruitment can be rather difficult and challenging. Even before the trial there are usually pre trial health examinations. With a disease such as Motor Neurones Disease (MND) only 10% of people diagnosed with the condition are eligible for for many trials. Many clinicians, scientists, etc would love to try and reduce the burden in clinical trials. It is essential in all trials that we have all patients working in the right protocol. Working in partnership; researchers and patients working together trying to deliver better clinical trials.
In setting up the trial one of the questions for the researchers – placebo or active compound?
When a trial is running and people are depending on the outcome of this trial. They are more often than not willing the trial to have a positive result. Wanting it to be a success and the drug to be able to treat the medical condition. There are a great number of people taking part in the trial that are disappointed that they received a placebo. Some would rather there were other ways than having a placebo in the trial, such as the gold standard.
Something we have to remember is the world is small. We all talk. We need support. We find our own no matter how far…… In this day of technology especially we can chat on the telephone, share information on social media, computers, visit different countries, etc, etc. Charities and groups get together and encourage patients to talk and they get to know one another so no matter what country they live in, the language barrier, how far away they are from each other – they still communicate. They will know if a fellow patient is going on a trial, or if they take sick or devastatingly if they die. Families will always talk. If a trial takes place and a patient is in the trial someone will tell someone else, good or bad news will travel.
There are issues around placebos. Most people that have been asked answered saying they would rather have the drug than the placebo. In a discussion one person commented and said he was fairly confident researchers would not want to give their children placebos in clinical trials if their child had a life threatening disease. What you have to ask yourself is could you live with yourself if you had 10 very sick children, 6 drugs and 4 placebos, they go into a clinical trial. The trial works. The drug cures the or gives the children a longer life span. the other 4 – get nothing out of it. Six months after the trial you hear that one of the children has died. Would you as the researcher conducting your next clinical trial have placebos in the clinical trial?
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.
Our new normal way of life can be difficult to live with at times, but we have to remember it is for our own good. People in various areas have different rules. Depending on where you live, what you do for a living and how your health is determines what you can and cannot do. What has made my life so much easier throughout this difficult period are Acts of kindness during Covid restrictions https://www.gov.uk/coronavirus
In the last few months I have sat back and read my social media pages, looked at what my ‘friends’ have written. Some posts have been entertaining and cheered me up, others have been sad and have made me grateful for what I have in my life.
Since the beginning of the restrictions I have been privileged to get thoughtful gifts, letters by post, flowers, texts, telephone calls, emails, FaceTime calls, etc. For this I would like to say thank you.
My most wonderful husband has been an ultimate star throughout. He has worked running his busy business as well as chasing after me, catering to any whim I may have. I try my best to be self sufficient, but I will admit I need by knight in shining armour to take charge in times of need. Steve has done such lovely cheer up things; my most favourite jeans started to get worse for wear, he sought out online not only a pair of my likeable Levi 501 in waist 23, but even managed to get the extra short leg – boy was I beaming. I’m always a freezing cold human bean – so delivered a pair of slippers wool slipper boots with a rubber soul from Denmark Oh my goodness my feet are so warm now.
My children, Tony and Stuart, their other halves and my grandchildren have been ultimate stars. Telephoning, FaceTime calls, texting, sending photos, etc. Nothing better than an excitable FaceTime call telling me all about their day. Love getting the progress news how the university is coming along. Getting texts saying morning Granny how are you? hope you have a good day, love you xxx. Make me feel so loved and warm inside. Video progression of the grandchildren makes me smile, sometimes laugh, always warms my heart and most definitely helps for not getting the visits like we used to.
Faithful Buddy
My sister Hazel sends me letters and cards by post. Its so lovely when I hear the postman drive up our chipped driveway, the crunch of the stone chips as he stops. He get out as usual and puts the mail through the door. Faithful Buddy goes with me to get whats arrived. I recognise my sisters writing, in the envelope is a card and some beautiful photographs of my grandchildren, myself, my lads, and my Dad. She tells me how much she misses coming to see me, our sisterly blethers on the sofa with the dogs at our feet. Some days thats just what we all need to hear. To know how much we are loved.
Cards from Hazel, flowers from Louise
Friday is chat with Jenny day. We met the first day at university and have been firm friends since. I so miss her coming over to visit at the moment with the restrictions being on a tighter leash at the moment. Fingers crossed they will change for the better and she will be able to visit soon. We could meet up outside, but for me its too cold. So for now, texting, whats app and Friday chat day will suffice.
I message and get messages from my sister, Helen and brothers Albert and Brian. We chat regularly keep each other up to date. So miss seeing my Daddy Bear.
One of the grand puppies
On top of the people already mentioned, there are an array of family and friends that have been supportive, giving me a phone, dropping a text, sending a message, etc, etc. Examples include My niece Lindsay sends me the most loving messages and photos of the children, love that girl right over our rainbow. Long time sister pal Liz and I talk on the phone and send each other messages. Sally, little toots from http://www.salspals.co.uk sends the most wonderful cheer up messages and photos of Harley boy. Louise messages me every day, love the photos of Gunner and Harris, received beautiful lilies the other day from her. I miss her popping in for a cuppa and us having a natter. Every morning I get a text message from minister friend Janice. We share other messages throughout the day and a couple of times per month we chat on the phone. Janice is inspirational and caring. Diane and Mark have been keeping me updated with stunning photos of Buddy and Bella’s grand puppies.
Social media is a great point of communication for any of us. Even if it’s just for 10 minutes looking down ones timeline to find out what’s going on in the outside world. I enjoy sharing information and have fun & banter with fellow members, from our Harley Davidson group at The Dunedin Chapter http://Www.dunedinhog.com. I have made great friends at the Chapter. Steve and I have missed out on going to bike events this year, however we are keeping up the chat with our buddies on Facebook I also get support from Scotland’s Net Cancer Charity, http://www.taect.scot for now they offer zoom meetings, online chat, quiz, Facebook page. I really miss seeing my pals, we text each other personally too and catch up on each other’s news. There really isn’t any need to be lonely if you are willing to work at it.
There was an act of kindness that touched my heart at the beginning of August that will stay with me forever. My nurse Evelyn that comes in to the house is an absolute trooper. All the nurses that come to the house are fabulous. My amazing nurses change my dressings, tend to my gastrostomy tube, give injections, flu jabs, my octreotide treatment. Health wise they do anything and everything. One day at the end of July when I was chatting to Evelyn I told her I thought I would look online and see if I could get a washable colourful cotton face mask. We blether about all sorts of things, sometimes it’s good to talk away from health, not about me, just about life, having some fun, ‘the doing things’ . The following week Evelyn came to our house. It was a Wednesday, full service day. Gastrostomy checked, balloon water changed, dressings changed, etc. And then a big beauty of a needle for my octreotide treatment. After everything was done and dusted. Evelyn lifted her jacket under it was a present. Beautifully wrapped and in a lovely little presentation bag. This is for you, she said as she handed me the bag. I eagerly looked in. The most delightful handmade cotton face masks. Matching children and adult ones. And ever so special to me zebra ones. What an absolutely thoughtful gift. Someone who is working full time in such a strained and stressful environment, in these difficult times. Taking time out to make the masks touched me. Made me feel very happy. They are useful, look great and I really like them.
My granddaughter Alex and me in masks made by Evelyn
Since March life has put on a different hat. We have had to learn a new normal. I’m a glass half full gal. I so appreciate the people in life that have made my life so much easier by the generous acts of kindness during Covid restrictions. Please remember when you are sitting on social media watching a video, or your feet up glued to a soap opera on Tv – think about dropping a mate a text, or give them a call just to say hi. Five minutes out of your day can make someone’s a really special one.
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.
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.
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 – time 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.
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.
smile each and every day 