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.
From as long as I can remember my parents encouraged me to listen to others and always speak up to others and tell the truth no matter what has gone on. I have always taken this with me, passed this on to my children; said to them whatever has happened just tell me and we will deal with it. This has I believe gave us a trustworthy bond between parent and child no matter what their age. My lads are in their 30’s and we still talk, I trust them and they trust me. Growing up I knew I could go to my parents and talk to them about anything and everything, I always knew whatever I said to my Mum or Dad it would go no further. They were full of fabulous advice, helped me transform from teenager to adult. Who do I talk to now? I chat to a couple of friends about everything and anything, one in particular we know we can discuss ‘our laundry’ with each other. However, my ultimate bounce off and discussion partner is my hubby Steve, we are partners in life, super friends, chat about all and sundry and most importantly there is that Element of Trust
So what is trust? I believe it is when someone can be relied on. Their honesty and integrity shines through. If I trust someone it means I believe they are who they say they are and they will always do what they say they will do. Most importantly what comes out of their mouth or from their written hand is the truth. They will not lie to me.
I pride myself in having a fabulous circle of friends, a beautiful family and most certainly a very close knit few that I value and trust with my life. Recently I have been disappointed with acquaintances. When I got told a lie from someone I actually never thought I would. That kick in the shins fairly knocked the stuffing out of me for several reasons………
There have been people in my life recently that have been irritable, non trustworthy, tit tattling to other people. These reprobates aren’t worth worrying about.
Building up trust: has not always made me popular but I’m a believer in say what you mean and mean what you say. Give people the benefit of the doubt. Remember the role of respect.
I have counted my blessings. Enjoyed being with friends and family. And relished that special time with my most loyal trustworthy labradors, Buddy and Bella; now they could teach a few humans a thing or two.
So for me, trust is important, especially in building up relationships. For those who know me, I’m a very happy honest human who enjoys life. Every day is precious and I am continuing to enjoy life with my beautiful family. On Saturday Steve took time from his busy business we spent a precious day together, Steve did a wonderful job gardening, Bella watching every step. Sunday we both took an amazing trip on Fattie our Harley-Davidson® to Moffat, St Mary’s Loch and Peebles with some friends. Sunday; beautiful scenery, lovely weather and great friends; a fabulous recipe for an amazing day out. Just the tonic to end the week.
I’m nearly 55 years of age and the words Huntington’s Disease are heard and said without thinking. Not thought of as strange or unusual. Why because I first officially heard the actual word Huntington’s when I was approaching my teenage years. My aunt (my Dad’s sister in law) was diagnosed with it. My auntie Josie was a beautiful lady; inside and out. Anyone that knows me will know that I am a dog with a bone, when I hear something I want to know everything about it. Curiosity killed the cat but satisfaction brought it back. Thats me. In the mid to late 1970’s it wasn’t something you shouted from the roof tops. And the ‘grown ups’ discussed things behind closed doors. I heard this word ‘Huntington’s’ getting mentioned often and then started seeing a change in my beautiful aunt. As a family we all spent a lot of time together. I spent quite a lot of time with my aunt and uncle’s 4 children. One day I came out with it, I was almost 14 years of age and I felt I needed to know more, those days you just couldn’t jump on a computer and search google. My aunt was amazing, she was actually brutally honest. She told me she loved my honesty and gumption for asking. She said when the time would come that no-one would be able to understand her talking properly, in fact she may hardly not be able to be understood at all, she herself would still be able to hear and would understand everything. She said she was nervous of being a prisoner in her own body. She laid her hand on mine, my heart thumped so hard I could hear it echoing in my ears. She asked “you will still talk to me”. I took her hand with my other and said, “am I my Mother’s daughter am I not. I can talk for Scotland. Of course I will”. She said to me if any of my children get this I beg for a cure in the future. Huntington’s disease is hereditary and there is a 50% of inheriting it. Bang on in my aunts family the two younger children, Susan and Colin were diagnosed. Colin chose never to marry, however prior to getting confined to a wheelchair if Colin was still here today and was promoting awareness he would say It’s me Colin, I’ve got Huntington’s Disease. Are you listening?
So what is Huntington’s Disease? It is a devastating rare hereditary disorder of the brain. Your chances of getting diagnosed is 50% if you have a parent with the disease. It affects the nervous system of the body; the network of tissues in the brain and the spinal cord that coordinates your body’s activities. Everyone with Huntington’s through time will deteriorate physically, cognitively and emotionally. Till eventually they are fully dependent on the help of others, whether it is family, carers or nursing staff; or a mixture of all. Symptoms usually rear their ugly head between the age of 30 an 50 years of age, with symptoms getting worse over a period of 10 to 25 years until the person dies. Huntington’s affects between 1 and 10,000 and 1 in 20,000 people in the UK. Unfortunately, as yet there is no cure and very little awareness.
The Month of May is Huntington’s Disease Awareness Month. The wonderful organisation; The Huntington’s Disease Alliance UK and Ireland are running a campaign Family Matters. The Alliance consists of four independent charities throughout UK and Ireland. The four independent charities all have the same goals and strive to help those affected by the disease, promote awareness and do their best to increase the understanding of UK wide of Huntington’s Disease.
Charities like these are important to get the message out there. Also to help those living with the illness, offer support, put you in the right direction in a time of need.
My auntie Josie was such an inspiration to me. Despite her own fears and worries she brought up with her supportive husband, my uncle, 4 lovely children. In her early days she was a Sunday school teacher. A loving mum, a super aunt. My Mum said she made not just a great sister in law but a great sister. It seemed so quickly that her speech became slurred and for many they didn’t know what she was saying. Her hands and legs were turned inwards as time went on and walking went from slow, to staggering to not at all. In the early days some people would assume she maybe had a glass of wine or six. But soon it was apparent that it was much more. I always remembered the conversation we had that day, and I would blether and tell her of my day, and would not care how long it took, I would wait till she finished asking me the question. It was usually, how was my brother’s children? or or the like. One thing she never lost, despite getting this cruel debilitating condition was her caring nature. Life for my auntie Josie was difficult, but yet she had very happy times, such a loving caring devoted family surrounded by love. For my aunt her husband was her rock. He cared dutifully for her in the latter stage, with the four children rallying round as and when they could.
As a family we are all very close. Close brothers and sisters, nieces, nephews, aunts and uncles and cousins. We all saw and still see each other fairly regularly. Most definitely keep in touch. I spent many a day in my summer break with my Johnston cousins. One thing we certainly all do is look out for each other. Try and help or offer advice if we can, when we can. The four children that were born and could be carrying the gene did not get treated any different. Laughter, games, studying, work, etc went on. Then came the time for the tests. The two youngest, Susan (same age as me) and Colin tested positive.
Colin, is a fun character. My punk rocker cousin in his tartan suit. Who drove stock cars. Loved classic cars. Collected them, looked and drove them. Was a fabulous boxer, with numerous trophies. An independent soul. He never married or took a partner. Lived with his Dad then moved to his own home, he loved his own house. He loved his music even more and travelled to punk rock festivals. He went on cruises. Loved his family dearly. His nieces were everything to him. When he started to struggle with walking he took his two nieces Leah and Kara on a Cruise, they loved him so much they helped care for him at times when he was less able. Colin liked a rum and a dance, and when he had to get his peg feed and was in his wheelchair, he didn’t let things get him down. He would put a little rum down his tube and he took to the floor on his wheels in his tartan suit. The sad fact is Colin had to get a peg feed because he lost his swallowing function; this was a decision he didn’t make lightly. It was probably one of the hardest decisions he had to make. And I’m not entirely sure he really wanted it. For someone that was so active and loved to sing, dance etc. This disease is so cruel to watch. To see my beautiful cousin struggle to tell me he still loves me was so hard. But at the same time it was so good to see how courageous he was, putting all his strength into a conversation, that love was still there and he definitely could still make me smile.
A very happy memory I have is a family BBQ held by Susan and Colin’s sister Karen. We had a super time. As you walked into the garden you were welcomed with smiling faces, the sound of children laughing and adults chit chatting and generally having a great time. Karen’s children, Kara and Heather and Susan’s girls, Leah and Billy would get up at any time needed and automatically fell into the role of carers without looking like a carer. Just that help with a sip cup, or cutting up the food to the correct size. A beautiful caring family that looked after each other without having to ask; the automatic care, willing ear to listen, physical help, loving unconditionally.
Colin’s symptoms worsened. It became impossible to live in the house that became his beautiful safe home and despite having carers in several times per day and family popping in the heart wrenching decision of moving swiftly came into his life. Colin needed to go into residential care, the difficulty was finding one that took a person diagnosed with Huntington’s Disease. Much to Colin’s disappointment Colin lived the last days of his life in Balhousie Rumbling Bridge Care Home. Colin was no longer a five minute drive or a 15 minute walk from his sisters and nieces and close proximity to his brother, Billy, but a drive across the Forth. He was still easy enough to visit and my sister Hazel visited on occasions too, and at times took my Dad. Colin loved to get a visitor, whether it was a sibling, cousin or friend. Rumbling Bridge Care Home did a fabulous job in looking after Colin. Sadly we lost our Colin to Huntington’s Disease. We had a funeral in Edinburgh in true punk rock fashion at Colin’s request.
Susan continues to battle with Huntington’s Disease every day. I spoke to her on chat yesterday. And to her daughter Leah, we are so looking forward to the restrictions of covid getting lifted so Leah can drive her Mum down to mine for a visit. It’s a bit of an expedition, but will be worth it. Leah has room for Mum’s wheel chair in her car. I live in the country, the house is a detached, parking right at the front door. Plenty of room. And certainly no trip zones. So all good. I am so looking forward to seeing Suzie Pie, I haven’t seen her personally for a while especially due to covid restrictions. Susan’s speech is now slurred and walking worsened she needs the chair. I am so heartened she has a devoted compassionate family. Although it’s heartbreaking to see my cousin deteriorating so rapidly from the last time we met, the person I know and love is still there. Life for my beautiful cousin is like living on a knife edge. A simple meal, something most people take for granted is a terrifying ordeal. Every meal, literally any piece of food or drink that goes down is dangerous. Just recently Suzie pie aspirated into her lungs and then had to get treated for a severe chest infection. Unlike her brother Susan does not have a peg feed and is now passed the point of being able to get one. I long for our next meet up so we can have something that hasn’t been allowed for what feels like an eternity an almighty hug and we can spend some time together. We always share “cousin time” it just takes a little longer to have the conversation. But as they say Good things come to those who wait but better things come to those who are patient.
This disease changes the daily lives of everyone that is affected with it. The person that is diagnosed is eventually trapped inside their own body. Forced to get help from others, be it physical and emotional. Even the fittest and most ambitious of us, as time goes by, our bodies get consumed by HD. Families and friends do their ultimate best to help and care both physically and emotionally. However at times they feel the pressure and need reassurance; we need to remember they too are fighting their own battle. Living with Huntington’s Disease affects the daily life of the person with it, but those living around them. It can have a massive impact on those who live in the home. When symptoms start to worsen and physical symptoms begin to progress equipment starts to invade the house. Yes its a fabulous help. But at the same time, another tick of the box that the disease is progressing in the direction you were hoping would take a little longer.
I hope by reading a little about my aunt and cousins you have been able to open your eyes to Huntington’s Disease and I’ve managed to raise awareness of this crippling disease that only takes over the body of those diagnosed but can haunt the minds of all those affected.
The awareness month of May is what is needed to spread the word. Let people feel more relaxed and knowledgeable about the disease. Family Matters. Absolutely fabulous, please take a look at their website. I have also been heartened to see on the television on the BBC drama Casualty, A&E Doctor Ethan Hardy has tested positive for HD.
The Family Matters Campaign is to raise awareness of Huntington’s Disease. This can only be a good thing. They are inviting those who have experience of Huntington’s to send in any information they would like to share, in the form of pictures, words, thoughts; it can be a poem for example, a quote, a few photographs. These will be shared on a digital community space called The Living History Project – it will be shared on The Living History Wall
To help promote awareness of Huntington’s it is important to share information not only by talking about it, reading pamphlets, etc, but moving on to the digital age. Sharing on television, websites, social media, etc. As I said earlier the BBC have brought it in on the storyline on Casualty which is fabulous for raising awareness. Charities such as #FamilyMatters help so many people and work so hard especially promoting awareness of #HuntingtonsDisease during #HDAwarenessMonth of May. You can find a relevant organisation in your area:
@HDA_tweeting – England and Wales
@HDAssocNI – Northern Ireland
@HDAI_ie – Ireland
@ScottishHD – Scotland
The Scottish Huntington’s Association avidly campaigns for Huntington’s disease charities. Olympic medalist and double world champion rower, Sarah Winckless is patron. Huntington’s is in Sarah’s family on her Mum’s side. Sarah herself has tested positive for the gene.
One thing I have to say I have rarely met a person with Huntington’s that has been a complainer in life. They have such a hard deck of cards to deal with in life and yet always seem to make the most of it.
So while you may have been complaining about being trapped in your 4 walls for a few weeks or months due to Government restrictions remember the people that are fighting a battle to get out there all the time.
Over the last year I have been missing out in meeting up with chums and support network at net cancer support meetings organised by TAECT We have however had zoom meetings. Had a chance to chat and share a story or two over the internet. Our last meeting we had a guest specialist. The zoom meeting was different this time it was a question and answer session with dietician/nutritionist, Tara Whyand specialising in net cancer and carcinoid syndrome. On a Wednesday evening we were talking about nutrition
The zoom meeting was very well attended with a great variety of questions. It was informative and interesting. Living with a peg feed you may wonder why I want to take part in the discussion. Primarily because I miss my chums and want to see familiar faces. I physically miss seeing the friends I’ve made through the group, including Barbara, Margaret, the two Alistairs, Muriel & Eric, David & Isobel. It feels like a lifetime ago that we were all together in Pencaitland bowling club at the Tea Party I pulled together and the music night. Not only raising money for Scotland’s Net Cancer Charity but promoting awareness of the cancer and making new friends. Pre Covid we would meet up physically these meetings would be called Net Natter Meetings. Things have to change slightly for now and technology is fabulous letting us all join in and natter together.
It may seem strange that someone like myself with a gastrostomy tube attends a nutrition chat. However, I found it great. Tara mentioned one of the most bothersome symptom; diarrhea. We discussed this. Spoke about flushing. Also pellagra. We discussed taking supplements such as creon and vitamin B. All in all it was very informative and helpful. I’m sure everyone got a lot out of it.
As the covid vaccine has been rolled out and the restrictions are getting lifted I hope we will be meeting up soon and we can start to have regular Net Natter Meetings again.
Since the day my consultant told me I had to give up driving my online shopping has increased tenfold. I purchase my weekly grocery shop online. The Sainsbury’s van could drive its way to our cottage on its own I’m sure. I have to admit I purchase nearly everything online, and from everywhere. I was so happy when I found out I was able to shop and give to charity without costing me a penny.
As most of my regular blog readers know I regularly attend Net natter support meetings with The Ann Edgar Charitable Trust. (TAECT) Scotland’s Neuroendocrine Cancer Charity. They are an invaluable support network as well as offer information days and zoom meetings. I got an email from TAECT letting me know that they had registered with Amazon Smile and Give as You Live.
So me being me, an avid online shopper and a huge supporter of TAECT started going onto Amazon Smile rather than my regular Amazon. I shop on Amazon frequently. I am an Amazon Prime customer and purchase several items per week. So thought it best to support the Charity. All I do is make a purchase as normal, pay the price like usual. The charity gets 0.5% of the sales every time I shop at no cost to me.
I then decided to register for Give a you live, its so simple. Register for free, and then shop online to different retailers. The retailer donates a percentage of sales to the charity. Its that simple. Companies that participate include, John Lewis, B & Q, Dunelm, H & M, Argos, Marks & Spencers, Pets at Home, Screwfix, Ebay, plus many many more. In only one week, I have shopped in John Lewis, Dunelm and Boden. £7.71 has been donated to charity without costing me any extra money.
Both schemes are a wonderful way to donate money to charity, there are a great deal of charities to choose from and many on your doorstep. All without leaving your arm chair and only for the cost of. the goods. Its a win win situation.
You can have a look at smile Amazon here. And Give as you live here. I’m sure you will agree they are both fabulous ways to help the income of charities.
So the next time you are going on Amazon to shop, instead of the regular Amazon, go on Amazon Smile. Register a charity and donate 0.5% every time you shop. If you are buying a gift for someone, treating yourself to something, getting a much needed product for the house, go through give as you live and donate a percentage to charity. It really is that simple and no extra cost to you at all.
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.
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.