Most people in life know someone with cancer. Or are knowledgable about signs or symptoms of some kind of cancer. However the rarer less known conditions need the help of Doctors, writers, patients, etc to promote awareness to get their name out there and help others know what to look for. “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. In oncology zebras have to be thought about. If a clinician isn’t as familiar with rare conditions, they may spend too much time looking for the proverbial horses. One such rare disease is Neuroendocrine Cancer and carcinoid syndrome. November 10th is Net Cancer Day. For the patient and the diagnosis it is all so important for the doctor in the big important Think zebra not horse.
Getting a diagnosis of Net Cancer can be difficult. It often goes misdiagnosed and the diagnosis is delayed and very often a person is told they have the cancer once it has spread to other organs and is incurable.
Living with Nets and carcinoid syndrome isn’t always easy. There are days it can really take over your life and just getting out of bed is a real struggle. However, there are great treatments and support networks out there to help you on your way. Looking after your body, eating the right things, meeting up with people and talking can all help in your cancer journey. I certainly know meeting up with likeminded people from The Ann Edgar Charitable Trust and sharing experiences has been a lifesaver. Making super friends along the way, the only down side is losing some dear ones to this damn condition.
On this eve of Net Cancer Day I think of the amazing buddies I have made since the day I was told I had carcinoid syndrome. I keep up with and chat to friends we share what’s going on in our medical life. I have lost and miss some lovely zebra, including Ann, Didi, Pam, Janny, Margaret, Becky, Norman, Linda. Celebrity zebra have included Audrey Hepburn, Steve Jobs, Aretha Franklin.
Audrey Hepburn’s son did a newspaper interview – you can view it HERE
Common symptoms of NETs include:
Flushing (redness, warmth) in the face or neck without sweating.
Diarrhea, including at nighttime.
Shortness of breath, rapid heartbeat/palpitations.
High blood pressure.
Abdominal pain, cramping, feeling of fullness.
Unexplained weight gain or loss.
The symptoms of a neuroendocrine tumour depend on where in the body it is and what hormones it produces.
Diagnosing neuroendocrine tumours
Many tests can be used to diagnose neuroendocrine tumours, including blood tests, urine tests, scans and a biopsy (where a small tissue sample is taken for closer examination).
octreotide scans – where slightly radioactive liquid is injected into your veins and a special camera is used to highlight any cancerous cells
Treating Net Cancer and Carcinoid Syndrome
Every patient has their treatment plan tailor-made for them. No one person is exactly the same. They may have the same germ cell. Could have been diagnosed with almost literally the same diagnosis – it does not mean the treatment will be the same. All our bodies react differently, we give off different hormones, etc. And to be honest we may not have the same attitude to the consultants conversation in the room.
For some people surgery is an option.
Somatostatin Analogues – may be used to help control the secretion of hormones if abnormal levels are being produced
Embolisation – Treatment that blocks the blood supplyusing chemotherapy, radiotherapy or radiofrequency ablation
Treatments used for some Inoperable and metastatic cancer:
Everolimus is taken as a tablet, sunitinib is taken as a capsule and lutetium is given into a vein.
Over the last few months life has certainly had its up and downs. As usual getting the usual carcinoid syndrome treatment. Not feeling the best at times and all that comes with it. However on the plus note covid restrictions have been a lot better, I have seen my family much more, Steve has been on the Harley-Davison®. We managed an evening out to see Del Amitri live in Edinburgh, at the Queens Hall. Our youngest son graduated from university. I got head hunted for a job from a very reputable company. We have a lot to be grateful for. As I was sitting working on my computer my phone gave a familiar bing. I looked over, it was letting me know my screen time was down. Most likely because I have been writing more this week, and I have gave the social media platform Facebook a wider berth over the last few weeks; mainly due to seeing the same old…… Although I have to confess I did see a few things on it today that made me smile, and other things that put me off…… on reading down the page I thought what has made me smile today?
Firstly waking up and being alive makes me smile. Every day is a bonus. I love where I live and who I live with. I open the curtains, roll up the blind in the morning, look out my bedroom window and the view of my back garden is a huge field where I enjoy walking my loyal Labrador Retrievers.
My boy Buddy is my assistance dog. He takes great care of me. Knows when my glucose levels drop. When my heart is misbehaving. He was such a great chap and tapped my nurse on the knee on Wednesday when she was attending to me, I asked her to check her blood sugar level it was sitting at 3.9 – he knew she was hungry.
My family not only make me smile they make me laugh. We have fabulous times together. Play old fashioned games, sit and talk, sing together, dance in the house and most importantly love each other.
Writing keeps me sane as well as makes me smile. Jotting down in a diary, keeping a journal, and writing for a living. I simply love it.
Listening to music most definitely made me smile today. Whether it is music on Apple Music, reminiscing about times gone by, Steve strumming his Martin guitar and beautifully singing along or Alexandra practicing her heart out on the violin or getting a guitar lesson from her Grandad. All those tunes give me such a warm feeling inside. It made me remember about that time……well will keep this one to myself…….
Remembering yesterday, listening to stories about the trip out pumpkin picking and dancing around the house and face painting.
It was the bank holiday weekend and the sun was shining. For more than a year I could only fantasise of meeting up with friends or going out to events with fairly large numbers. The run up to the weekend was fairly difficult, my gastrostomy site was leaking, the pain set in and my skin became red raw. By Wednesday, treatment day with my nurses I was needing a swab taken and had a bit of a temperature. GP phoned me at 7.45am on Thursday morning to let me know antibiotics were ready for me. Woo hoo, what kind of person gets excited about antibiotics. One that wants to feel better. This weekend would normally be TITG® – our annual bike rally hosted by The Dunedin Chapter in Aviemore however it was cancelled due to Covid. Fortunately there was still time for fun and an alternative weekend in store for us down here in East Lothian. It still included some time with some Chapter members and the Harley – on Sunday I had a grand day out at Newhailes House.
As Alexandra and I arrived at Musselburgh the honest toon was looking very busy. Families walking in the direction of the estate of Newhailes House. This Sunday was a special day, there was an open day inviting members of the public. It was mainly a classic car event, with other super side lines. Dunedin had the Harley-Davidson® motorcycles, there were some sports bikes too, the fire brigade were there, the police, a fantastic array of stalls, and of course amazing classic cars. Plenty to keep us occupied.
As we walked into the grounds of the estate we could hear a very familiar sound. The roar of her Grandfather’s Fatboy. Parked in a line – the Dunedin Chapter Members and their Harley Davidson® Motorcycles. There was an eager bunch of kids waiting to sit on the bikes, lots of smiling faces. As we walked up towards Fattie we saw Steve giving a demonstration to a happy lad.
Alex and I walked round, thoroughly enjoyed the sights. Totally loved the cars, bikes, stalls, etc. Soaked in the atmosphere. Sat on motorbikes, looked at beautiful classic cars, clambered on tractors, enthusiastically stood in the long queue for the sit in the fire engine. We had a fabulous day all on our doorstep. I’m sure the Dunedin members enjoyed their day.
My first memory of London; I am 11 years of age and in London with my Mum and Dad, we are passing a lamppost with ER printed on. Dad says “Biscuits look at that Elizabeth Reigns, you work hard sweetheart and you can be a boss too” My folks always gave me the encouragement and love needed to go forward in life. They helped me feel safe and secure. In 2012 I took the train with my hubby to London, this time not for a holiday but to see the expert Professor Caplin at The Royal Free. Despite needing diagnostic tests and treatment for incurable stage 4 neuroendocrine cancer and carcinoid syndrome Steve and I found time to explore new avenues. See museums, art galleries, The Tower, take in a show. One thing I am most certain of London, the city that keeps me alive more ways than one is my most favourite city.
Since 2012 I have been and continue to travel up and down the train tracks between Edinburgh and London. Had countless appointments with the Prof, attending clinics, grateful for but not particularly enjoying gallium pet scans, various treatments, glowing like the Readybrek kid, setting of alarms here there and everywhere, and many many blood samples on ice and some taken in special light conditions and immediately put in a Black bag. So tired that when I escape from the delightful cancer team we go to the West End show – We Will Rock You. A musical I have wanted to see for some time, the first half I sit, smile and sing along, the second I sleep right through, with the audience loving the show, singing at the top of their voices. The staff at the UCL Hospital and The Royal Free in London have been outstanding and for that I thank them from the bottom of my heart.
The last year we have had a year of corona, crisis and challenges. But let us not forget that the breakthrough of the vaccine has allowed us to start to come out of lockdown and find some sort of normality, try our best to get back to work, start socialising and enjoy life.
July 2021 we decided not to go to London tandem but to go with my sister Hazel and her husband Alan. The boys rode the Harley-Davidson® motorcycles down and Hazel and I took the train first class from Edinburgh to London Kings Cross. I have always wanted to ride pillion over Tower Bridge. As well as having a fabulous 4 days Finally got my wish. Riding over Tower Bridge was as good as I expected, it was very busy, both lanes used, cyclists going as fast as us. Beautiful red double deckers travelling along with smiling faces looking over the Thames. Black cabs going no where fast. All of us sitting in the two lanes travelling along at 10 miles per hour, superb for me as a pillion taking in the view, people watching, loving the sights. Gathering my thoughts.
We crammed in what we wanted to do, Steve and I have done lots before including The Tower, The British Museum, various parks and lots more. This trip was to be relaxing, however there were a few places we wanted to tick the boxes. Namely Ace Cafe, The Bike Shed and Warrs Harley-Davidson®
Friday morning we gathered our bearings had a doddle around on foot, enjoyed some squares such as Russell and Tavistock Square, walked through St James’s Park, had lunch at The Hard Rock Cafe, Picaddily Circus, saw some of the sights on foot and then took a taxi back to the hotel looking forward to Friday night on the bikes.
We teamed up with our Sena Communication kits and rode the Harley’s up to Ace Cafe on Friday night. Friday night is bike night. Oh boy what a fabulous evening it was. There were car park Marshalls when we arrived, 20 minutes later I could see why. The entire car park was full of bikes. I’ve got to say anyone we spoke to was so welcoming and friendly. We first off hooked up with 4 young lads with Harleys. They don’t belong any Chapter, just friends riding their bikes. Went into the cafe for a cola and a scout around the shop. Came out and if possible it was busier than before. A familiar Harley fist bump came my way from Gerry; a member of The III Rivers Chapter, there were two members together, they welcomed us into their abode; great guys. Looking out onto the road there were motorcyclists doing wheelies up and down the road, burning tyres. Revving their engines, screaming up and down. So loud, vibrant and exciting. Gosh it makes a girl’s heart fair beat. One of the highlights of the evening was the calm Great Dane in the sidecar, sitting watching all going on taking in everything. What an unforgettable night.
Saturday we took the bikes for a tour of London, did what I’ve always wanted and rode over Tower Bridge, drove through Marble Arch, passed St James Park, Covent Garden. We followed our Harley-Davidson® noses to London’s Dealership Warrs. The Dealership is fabulous, as well as great bikes, superb range of accessories and clothing, they have a museum including Evel Kineval’s bike. Not to mention their very helpful outstanding staff; Holly and Edwardo. They sponsor the HOG Chapter Chelsea and Fulham. We met a lovely Chelsea and Fulham Chapter member at Warrs : Steve. He came with us for a tourist ride round London. Then the five of us went to the amazing Bike Shed, terrific experience from start to finish. As we arrived we were shown where to park, the great think is you can ride the bikes right in and ride passed tables as folks have a drink. Undercover safe parking, so secure you can leave your helmet on the seat of your bike. The staff warmly greeted us, we were an hour early, she asked if we could be fitted in would be like an earlier table – hell yes! We toddled the dozen steps to the shop, treated ourselves to a t shirt and some patches for our cuts, had a good look round, amazing bikes. There is a barber shop too. Our table was ready and the food did not disappoint.
As always I enjoyed my time in the big city. Our final evening after packing and getting organised we ventured round to quiet Bloomsbury for a cocktail.
My Labradors are content at our holding. Buddy never really leaves my side, goes wherever I go, literally with me into the bathroom, etc. The clever clogs knows when my unusual body is playing up and despite having my peg feed on my blood sugars drop and he comes to my assistance. He knows when my heart is banging so hard I can feel it pounding. Buddy is a wonderful assistance dog to me, my right hand boy. He wanders around the house, pads up and down the long hall. If I was to put a pedometer on him I could imagine his step count each day just in the house, never mind the garden would be pretty high. Bella gets a free reign to. They love their runs in the back field, especially with granddaughter Alexandra. However, when my sister Hazel said she had booked www.unleasheddogparks.co.uk for Buddy, Bella and her young border collie Jed I never anticipated what was in store – a fabulous afternoon at the dog park
Unleashed dog park is only literally a three minute drive from our home in Boggs Holdings, Pencaitland. It provides a wonderful safe environment to let your dog run free and get plenty of exercise. There are great quality equipment for the dogs to play on, a sensory area, a sandpit.
The massive bonus for us is you drive your car into the field you will be using. With my health the way it is, I’m certainly not up to walking my babies a long walk. Places like the dog park in my area are just perfect for a treat. They enjoy running around as they do on our wide open fields but with the added extras of the sensory garden, the equipment to climb on. A fabulous and safe place to train or treat your pampered pouch.
My only disappointment was photography is a huge passion of mine and I neglected to take my Nikon camera with me I took all my photos on my phone. Don’t get me wrong I was really pleased with the results on my Apple
Since March 2020 life has been a funny old world for us all. The arrival of Coronavirus and the devastating effects it has had on us. Many of us have had life changing situations and learned to live with a new normal. We have lost people we love, heartbreakingly not been able to be with them in their hour of need. Staff have courageously battled on through conditions many have never seen before. For all the dedication of workers, volunteers, families, friends, loved ones, etc I thank you. Without the help and love of others it’s difficult to see the light at the end of the tunnel.
Now sitting writing this on this Thursday morning in April 2021 in my sitting room, I feel a whole lot more positive than I did this time last year. The vaccine is going well. Yes we are concerned about blood clots, but that’s a whole different story and I believe the benefits outweigh the risks. The restrictions are lessening here in Scotland.
My District Nurse, Jennifer was in yesterday she commented how peaceful and relaxing our home is. I told her yes with my carcinoid syndrome fatigue is a huge problem as well as nocturnal diarrhoea so quietly listening to music and writing is relaxing and helps a great deal. Buddy and Bella help too. Snuggling up on the sofa with my Labradors can be just what the Doctor ordered.
The stressful year has affected us all. For me the best way I cope is having my glass half full not empty. Taking the dogs to the dog park such as Unleashed helps blow away the cobwebs. It benefits both the human beans and the K9s.
If you haven’t been to a dog park before and you are swithering, give it a try, Buddy is ten years old, Bella eight and my sister’s border collie, Jed is only nine months. They all had an amazing time. Got home tired out and I’m sure they are looking forward to their next visit.
It’s coming up to the final Saturday in March and here in the UK we are all going to lose an hours sleep. We usually associate lack of sleep with things like stress, or going on a night out, or maybe the baby has kept us up crying. But this time we are getting told YOU WILL HAVE ONE HOUR LESS THROUGH THE NIGHT LIKE IT OR NOT. Are most of us going to complain about this? Heck NO! Why, it’s British Summertime. This Saturday we will spring forward.
Since March 2020 for many of us life has been pretty difficult one way or another. We have had many an incident to try us. Covid-19 struck and the world has never been the same again. Worldwide 125 million have been diagnosed with covid, 2.75 million people have died from covid. Countries have been in lockdown, many of us still have restrictions. Businesses closed, lots of folks unable to work or changing their way of working and working from home or making adjustments to their workplaces to ensure the safety of the workforce and customers. Education has been a huge challenge for both students and staff. Everyone in life feeling some sort of pressure in some way or another.
What we have to remember is everything that has been done is in the interest of all of us. When we have been told to stay at home it is for our own good and to help save lives. The vaccine is being rolled out and ticking along nicely. The elderly, frontline workers and the vulnerable were the first to get their injections. Now centres are busy working round the clock making sure we all get immunised.
As the beautiful daffodils dance in the March winds, they bring hope and I believe happiness. Our front garden has many daffodils. As the dogs run up the grass and the sun shines down on them as they pass them you can’t help but feel a warmth in your heart, even on a cool day. Yesterday my sister Hazel and my 5 year old granddaughter Alexandra walked my Labradors. They all had a lovely time. Including me; I maybe wasn’t on the walk, however I so enjoyed hearing about it when they came back and loved to see my delightful labs looking so happy. Tails wagging franticly, bottoms wiggling and big doggie cheesy smiles.
Hubby Steve came back home and Alexandra was very excited to see her Papa. Out she went and jumped on the lawn tractor. And rode up the garden, her beautiful curly hair naturally blowing back showing her delightful smiling happy face. Afterwards she came striding back to the house, grinning from ear to ear with a bunch of daffodils in her hand from the garden; won’t they look nice in the window Granny, Alexandra said with pride. And how right she is.
Tonight I will be going to bed, and setting any manual clock one hour ahead. Big benefit in UK is daylight saving. Next weekend is Easter. I’ve got a busy week ahead, stoma nurse specialist video call on Monday, big discussion and specialist training to get discussed. Specialised training to get booked in. My nurses will be in on Wednesday for Gastrostomy full service, dressing change and octreotide injection.
Lets hope the weather starts to get warmer, and life will certainly start to look an awful lot brighter for all of us.
We are only half way into the month of March and already it has been filled with emotion. Despite feeling very unwell, burst balloon in my gastrostomy tube, more district nurse visits than normal at home; I have spent time with all 4 of my siblings, we have pulled together and gave the love back that was showered upon us as we grew up. February was difficult and March became emotional, in this year 2021 I certainly will not forget this month, with so many memories – most definitely a memorable month of March.
Just a few weeks ago my Daddy Bear admitted he wasn’t feeling too good. Mid February, we brought a bed downstairs and the GP came to his home to see him. My sister, Hazel and I were there. The news from the GP wasn’t good and Dad didn’t have long; she reckoned a couple of weeks. The GP arranged for the District Nurses to come in to Dad. They would visit every morning and then assess how often the visits on top. As one of five we arranged a timetable so Dad need never be alone. He had constant care. The team of district nurses were fabulous, their care second to none. The support they offered was outstanding, they brought endless supplies. Our uncomplaining Father they said was a privilege to care for. They also commented on what a superb system we had in place for looking after ‘our Bertie’
The service from the NHS we can not fault. The District nurse thought it would be a good idea to get a hospital bed for Dad, he would be more comfortable on an air Mattress and it would be easier and safer to attend to him with adjustable height and the ability to raise his head, etc. Nurse Wendy telephoned for the bed at 11am, it got delivered at 2pm that day, and the nurses came at 2.20pm to transfer Dad from his own bed to the hospital bed at home. Service with a smile.
When I was home and getting treated by my district nurse, she asked how I was and how I was coping – we had a good chat. In the conversation I mentioned where my Dad lived and the area the District Nurses covered. My nurse knew the nurses personally. She had worked with them and commended their great work, she told me my Pops was in excellent hands and they would take great care of him. And that they certainly did.
The district nurses, Mari and Wendy asked if we would like extra nursing help. This came in the way of Marie curie Nurses. They were amazing. Came in twice a day to care after Dad. Nothing was too much trouble for the delightful angels that came to assist with Dad’s care. However, they not only looked after our Father, it was very apparent they were there for us too.
Knowing Dad didn’t have long left on earth I wanted to treasure every moment I could with him. With my health I’m not normally up and ready to go first thing in the morning. And during current restrictions I have been home and not seeing anyone. However, this situation put a different light on things and gave me an inner strength. I would get up in the morning, take off my night feed, get into the Wetroom and get myself ready to go to see my Dad. Getting washed is one of the most essential exhausting activities for me. Turning on the shower, getting washed, sitting on my stool, looking down at my bright red flushed feet. Getting washed exhausts me and brings on a carcinoid syndrome flush. Right from the tip of my feet, all the way up my legs, over my trunk, up my neck, leaving me with a bright red face. My heart thumping; I can hear it banging in my ears. I lie on the floor till it calms down. Meanwhile my skin begins to dry. I climb up on the stool and get myself dressed. Put on my creams, including my Dundee cream. I go to the sitting room where hubby, Steve has done all my meds. Take them for the morning. Put on my feed. Sit for a rest to get some energy built up. And then all set to go to spend some time with my amazing Dad. My brother Albert will be there in the morning too to meet up with the nurses along with me.
We only got just over one week to care for Dad. It was the most precious time and a privilege to be part of. I thank the lord for blessing me with enough stamina to go to the folks; our family home, and be with Dad in his last days. The love I have for my parents pushed me to go on. After the love, security and safe feeling my parents surrounded me with I would give them it back ten fold.
The love and dependability my parents gave me always made me feel safe at home. This is something I have always strived for. To make sure my children feel safe and secure and that they can always come home. After Dad passed away these words struck a heart string or two:
Sometimes I feel lost
Remember I love you, and
Love brings you home
Who was our Dad? He was a caring, loving and kind Dad, husband, Grandad, Great Grandad, brother and uncle. He would give us kids his last. For Dad his family is everything. He taught us well, brought us up grand and fair. He worked very hard and built up his own business. We always had a car and we were the first folk in the street to have a tv. Mum was the love of Dads life, they loved to travel and enjoyed many trips abroad, including their beloved Germany, especially the Rhineland. They loved to take trips in the car , taking the grandkids out on adventures. When Mum died Dad gave up driving, he said he no longer had a co pilot to go out on journeys with him. Dad never got over Mum’s death, like me he just learned to live with it. Our folks not only provided a loving secure home for us five, but offered our children, and their children a place to come whenever they needed. They welcomed our friends, Mum chatted to them, offering a sympathetic ear and Dad could be found in the kitchen making a sandwich or ten. When it came to parents I reckon we hit the jackpot.
It is going to take me some time to as they say get my mojo back. When alone I find myself thinking of something that reminds me of my very happy childhood, or the assistance as I went to university, having my children, moving home, going into hospital, getting treatment, need I go on… and I am reminded of all the happy times I have had with my folks and then the sudden realisation that this will never happen again. My heart sinks and I am filled with dreaded fear. I have to believe that my folks are at peace, I was well and truly loved and so very privileged to call Helen and Albert my parents.
I’m pretty sure that most of us have been affected by cancer at some time in our lives, either by living with the disease, helping someone through it, or maybe its an acquaintance, but affected you more than you thought it would. Whatever your involvement with the word cancer and the illness, it impacts the lives not only of the person that physically has the diagnosis but those around them. As someone that has had the word cancer in their life for quite some time, the diagnosis in many people, although it has taken the life of such wonderful people today is a day for positivity today is World Cancer Day 2021
When many of us sit in a consultation room and gets a cancer diagnosis it can be like hitting a brick wall and your world can go in a turmoil, everything can become a blur and life may never be the same again. Some cancer journeys are fairly short and others are a long hard slog, whilst there are unfortunately some that are managed with palliative care. Wherever the road takes you its always a memorable one and easier if you have someone to share it with.
Family and friends are fabulous they listen, help you, take you to appointments, etc. And are a great shoulder to cry on. However, we have to remember they are affected to and need escapism. Sometimes its good to talk to a complete stranger. Or at least what starts of as a stranger. When you are going through a cancer journey please reach out and talk. Talk about your feelings, don’t leave them in the box and feel strangled and down. Charities such as Maggies Cancer Care, Marie Curie offer volunteer facilities where someone will chat to you, other places do this service too, ask your oncologist, consultant, doctor, GP or nurse for advice. Even if you are too unwell to go and meet up, or as we are at present in these restrictions due to covid; arrangements can be made to chat on the phone. Believe me it really helps. It certainly doesn’t have to be on the nature of how are you feeling?, but can be if you want it to be. Conversation can be light hearted. Just because you have a serious illness doesn’t mean you need to have a serious conversation; you are still allowed to laugh. Its lovely to build up a relationship with someone and have trust in them that you can talk and say things and that it will go no further. Not feel guilty for what you say. Feel good for laughing. Share stories.
Whatever the cancer journey its usually an emotional one as well as a physical one. Most certainly one we couldn’t do without the help of the wonderful oncologists, consultants, doctors, scientists, nurses, volunteers, researchers, drug companies, charities, etc. For their amazing hard work and dedication I would like to thank them. What certainly keeps me going is positivity and keeping that frown upside down by making sure I smile each and every day.
Well one month into 2021 already. Its just turned February. For some its a dark month and many folks find it a lonely difficult time, with thoughts and reflections going through our minds. This year we are still in restrictions, a great deal of people have jumped from one personal crisis to another. There has been so many difficult situations for our fellow human bean to cope with over the last year; we have been tested in more ways than one. I have known a fair number of family and friends who have over the last year fought life threatening coronavirus. During this pandemic many people have faced fear, anxiety, poverty, hardship, social isolation, unemployment, etc. Now is the time to take notice of who has been helping who, and most importantly does anyone need help. Remember when we used to pop in for a quick chat, or go out for that drink, meet up at lunch time, or a run on the bikes. That person is possibly lonely a missing seeing everyone and could do with a jolly good chat. Do yourself a favour and as the scout or girl guide leader would say do your good deed for the day; Pick up the phone – its good to talk
I think we can all agree that this has been an unusual year. It has been a difficult time for everyone at some time and we have all be faced some sort of challenge and uncertainty. I don’t think anyone thought we would still be facing these kind of restrictions in 2021. Covid-19 has dominated our lives and health. The NHS and the care staff have taken good care of us since the start. They are dedicated and like true troopers put patients before themselves, work long hours; doing their best to make us feel as comfortable and secure in these strange and difficult circumstances.
From my personal experience my team of medics all the way through this pandemic have been ultimate superstars. My net specialist emails in between appointments to check up on me, make sure how I am doing. My nurses come in to my home changing my dressings, changing the water in my gastrostomy tube weekly, administer my octreotide treatment at home fortnightly, change my entire gastrostomy tube every 8 weeks (however due to problems such as infections, burst balloons, etc its been happening after 5 weeks, 1 week, 3 weeks). My nurses will also come to my home if I have any problems. They are wonderful; my net specialist telephoned me last week when he was on the phone he commended the nurses and said the work they did and how well they looked after me, helping keep the amount of infections down and most certainly assisted in keeping me out of the hospital. The amazing supportive Community Enteral Nutrition Team (CENT) call me regularly. Usually Kat or Marion visit me every two months. They weigh me, check on my peg feed and we discuss how my feeding regime is going. We talk about my quality of life, what is going on with my appointments, my body and everything thats going on in my life. They are very supportive and always at the end of a phone. I can pick up the phone and give them a call any day, if they can’t pick it up and talk to me when I call. Their secretary June will answer, take a message and one of them will call me back, chat with me and sort out any problem that may be going on. They report to my dedicated Net specialist (The Prof), my hard working GI consultant, who works hand in hand with the Prof, and my GP. Letting them know if anything needs changed, such as my frequency of feed, etc. Remember my GI consultant, he is the chap who did the creative drawing when he kindly saw me bang in the middle of covid restrictions and did a wee procedure when my gastrostomy tube fell further into my intestines than it should have. He has to have sense he has labradors.
For some people this will have been a long and lonely year. For others it will have gone quickly and nothing much will have changed other than the physical restrictions, such as supermarkets, going from one district to another, closure of shops, establishments, etc. This time last year I was looking forward to going to Dunedin Chapter’s AGM meeting and annual dance; this is the Harley-Davidson® club that my husband and I belong to. The AGM was actually the last meeting we all got together for an official meeting. Now that the vaccine is getting rolled out, you never know…………. I miss the blether, the friendships, get togethers. However, right now its for our own good, and we have to wait until the appropriate time. A while longer to make sure we are safe is better in the long run. So in the meantime be content with sharing a conversation on social media or a text, email and most definitely a natter on the phone. When director of Dunedin Chapter Scotland HOG® #9083, Stewart Willox phones me and says I won’t keep you Elizabeth, and we are still blethering 20 minutes later. I’m sure the poor chap’s ears are bleeding.
I have been very fortunate over the last year and would like to says thanks to the folks that have kept me going, I wrote an earlier post on being thankful for my smartphone and posts being grateful of support during this pandemic. However, I would like to echo this and let everyone know I more than appreciate the texts (yes minister friend Janice, even the early morning Prayers), WhatsApp’s, emails, social media messages; every piece of contact helps prevent the feeling of loneliness, it makes me appreciate what I have – a circle of human beings around me that care. I so love the photos I receive in texts of my grandchildren, it brightens my life and lightens my heart. Marion and Tony send me the most beautiful photos of Luna, she was born in lockdown, we were privileged to see her Christmas Day and have only seen her via technology since, thank goodness for gadgets. We have round robin texts between Tony, Stuart, Marion, Laura and Myself; all checking in, keeping up with the news and sharing photographs. Pre lockdown both my sons were at our house regularly and our home filled with laughter and cheer. Now our lads call regularly, they FaceTime with the kids which is fabulous, I get time to talk to the boys and chat away with the babes. Nearly 5 year old granddaughter Alexandra loves chatting away at anytime. See how they are developing, here all their news. Never tire of hearing their news, listening to Tony telling of his uni work, and whats going on in the world of government policy at Edinburgh University , or chatting with Stuart as he drives home from a hard shift at the hospital where we talk about all sorts. My sister Hazel and I text message each other every day just to check in. We blether on the phone often, and its never a short phone call. My friend, Jen, we met on the first day at university in Edinburgh when we were both 18. We’ve been firm friends since. We chat every Friday morning at length. I so enjoy these calls and have to admit they help keep me sane.
The last year for me has been difficult I won’t deny it. I have been over the threshold approximately half a dozen times and most of those occasions have been sheer necessity. I so miss being able to ask Steve to drive me over to visit my Dad. I miss going to my support meetings with The Ann Edgar Trust; so miss seeing the friends I’ve made and the support I get out of going. So for now I’m still content with my calls and other means of communications. My daily WhatsApp messages from Louise lets me know I have a loving caring friend, Stephen cracks me up with his comical wit on WhatsApp, he sends me not only messages to ask how we are doing but jokes, photos to make me laugh; he arranges online quizzes that we take part in on zoom. Lindsay Lou messages me with photos of the kids and tales, I so miss seeing them, suddenly Glasgow feels like the other side of the world.
I’m sure you have been affected this passed year in some way. Whether its physically or mentally, we have all been touched one way or another. Family and friends are important, keeping that line of contact is much more beneficial to some than others. What I have taken from this year is, yes it has been trying, but we have to remember restrictions are put in place for our own good and to save lives. During this pandemic a great deal of people have been diagnosed with this awful virus and sadly numerous folks around the world have died from it. Receiving messages, seeing familiar faces on my silver screen, receiving cards from my sister regularly by post, chatting on the phone, sharing news or a problem or five. I realise how lucky I am to know I am loved and cared for. Next time you pick up your phone to look up your social media pages or online shop, why don’t you give your family or friend a text or better still a phone call. It is so lovely to hear a friendly voice, share a chat; find out whats been going on in YOUR family/friend’s life. If you are going to do something nice today and think of others; do a good turn, please don’t say you don’t have time, life is good and far too short. Share something nice that happened today with someone. Please Pick up the phone – Its good to talk
For many 2020 has been a difficult year, and certainly for most a memorable one; it has been a year like no other I have known. My hubby and I spent Hogmanay at home on our own. Just the two of us with our beautiful Labradors. This was the first time ever we have been alone to bring in the year and say Hello 2021.
I must say although very different from our usual ceilidh, our last night of the year was a fun packed one. We took part in a family and friends Zoom quiz. Stephen organised it. A busy young Dad with three kids; Stephen and son Louis were quiz masters. We had participants from near and far. Laughing, joking and talking was definitely allowed. We didn’t come first in the quiz but did not disgrace ourselves. Looking forward to the next one.
We are one week in to the new year. Eventful already.
The balloon on my gastrostomy tube burst on Hogmanay. Wonderful efficient staff, it was changed immediately. Six days later the tube was loose, my dressing was drenched. My ever dedicated medics attended to me, yes the balloon on the just short of one week old tube had exploded once again. Nicola changed my tube and then gave me my octreotide injection. This was then a day for complete rest.
To be honest despite the feeling unwell, and the pain. I have enjoyed being home. Sitting by the open fire with my beautiful labradors. Writing and editing. We are in a second lockdown. Yes, it’s a worrying time and I so miss being able to go see my Dad. Strange times my family and friends not coming to my house for a visit. We have to remember these restrictions have been put in place for our own good, to prevent infection from spreading and a big plus point is that we have a vaccine that is getting rolled out to the general public. It will take a while but as time allows we will be able to go out more, visit and one day in the future live a “normal life”.
For some life has been more challenging. It may be they are a key worker and things are getting tough. The usual “go to” place has gone, and talking with others feels trivial. Please try and remember this when someone is looking a little more weary than normal, or talking less than usual, ask how they are – it goes a long way. When a person says they are fine, it doesn’t mean they are doing well.
During this lockdown children at present have to stay home and get home schooled. For many families this works well. But for some life is hard. In many homes there are more computers, laptops, tablets than human beings in the house. In other homes there is one unit in the home or perhaps none at all. When the children are home schooling they get work from their teachers, there are programs on television. The internet plays a vital part in a child’s education. Hence the importance of a piece of equipment to get on the World Wide Web. It’s heartbreaking to think that in this day and age of digital technology that some families lack that availability in their own homes. If you have a laptop, computer, iPad, tablet that’s surplus to requirements please think about handing it in for someone else to use. There is always someone in your area that can use it. You can find out more about recycling your products Here
Whilst the restrictions carry on I will continue with my Content Writing and Editing work. I am so lucky that I enjoy doing it. Photography is my passion. For the time being I am pleased enough with taking photographs in our garden, snapping images of things in the house, pointing and shooting my beloved Nikon at my Labradors, I think they feel like fashion models. Although my husband’s Harley is a great bike for taking photos of. Today was a grand day. I sat at my desk in front of my computer, did work on a newsletter. Then took some photos of a little visitor out our back garden. I’m sure he will be a regular visitor. A beautiful little Robin.