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.
Being at home permanently since March 12th has certainly given me time to think. There has been many a lonely hour to reminisce. Its been lovely to look back and remember events that have gone by, places I’ve have visited, people that have came into my life and made an impression; left their mark.
In my 54 years of life its been happy, eventful and surrounded by a great many beautiful caring characters. From the moment I have been able to comprehend I was showered with love. As I grew up I was always shown kindness, the family philosophy was treat others as you would like treated yourself, I will never ask anyone to do something I wouldn’t do myself. Yes these days as I am getting less able and I will pay someone to clean, paint or fix something – I’m sure these tradesman appreciate the work.
Getting back to my time to think. When I was sitting putting my feed on I was thinking about when part of my job included listening to people and their problems, how they were feeling. I encouraged them to talk about their feelings. Express exactly how they felt at that particular moment and how to deal with it. I would gently persuade them to chat and through time just by talking they would soon realise what made them happy and what made them stressed and sad. We would work on the positive aspects of their everyday living and help them get back to a happy place. One thing that did happen to several people is that at some point during their journey was they would face an emotional encounter. Regardless of their gender, age or size they would talk about whatever may be bothering them, or perhaps on the contrary what has made them very happy that day and then suddenly the voice would go quieter, and that emotional encounter would take place; the real journey had begun and I would consider my work as continuing success…. Looking back at how a lot of us are feeling at the moment, frightened to show our emotions, a lot of people get told to be quiet, not talk about their feelings, not cry. If they do cry many are met with Now come on, stop that crying, pull yourself together. Stacy Solomon on Loose Women was talking on ITV and said her mum used to vacuum when she was crying, to hide the fact that she was. All very sad. We need to be allowed to show our emotions.
I still remember one particular chap when I was working, he was your average build gent, and a father of three, he felt he was failing all round, his family, his work, his health, and most importantly himself. Of course he wasn’t. When he got to his emotional encounter he quietly sniffed away the tears and continued to talk, shortly afterwards he described blurry vision and tears threatened to spill from his eyes. He wiped his eyes so much they were red and swollen. I handed him a handkerchief and said let the tears happen, please don’t be embarrassed. His lips trembled, an involuntary whimper escaped his lips as tears spilled over the sides of his eyes. He looked over at me, his face shouting out help me and please listen. His body wracked with an onslaught of sobs and tears. The tears raced down his cheeks. He cried for a few minutes. When we discussed events he explained how relieved he felt and thanked me for getting him there. We still had a way to go, however, the big lesson learnt was not to these suppress emotions; and deal with them appropriately – the basic emotions are happiness, fear, surprise, sadness, anger and disgust. The message from this experience I took was most definitely people gain from expressing their emotions, getting upset, talking about their problems; a problem shared. Big boys do cry.
I most certainly do know being home on my own and having this time to think I also have to to shed a tear and I have probably cried more in the last few weeks than I have done so for quite some time. Although I do have to say my life is made so much better by those folks that message me and ask how I am, who give me a phone and have a natter. Please drop an email or a text or give a quick call to your pal or your mum, brother or sister, etc. I have noticed there are some folk that I only get texts if I send them one first, would I get one asking how I am if I didn’t send them one? Perhaps I would, maybe I wouldn’t!!! But one thing I do know there are some folks in my address book that we send messages to each other regardless, sometimes I’m first, sometimes their first. But one thing I do know we deeply care about each other and look out for one another. You guys know who you are; I love you.
As the pandemic continues. We are still in lockdown. Life continues to be on a different path. Real life physical human beings I see; my husband of coarse, I live with him and so very grateful we have not only been lovers since 1982 but best friends. My nurses; to tend to my gastrostomy tube, change dressings, etc, etc. And see anyone from a distance at the door when they deliver parcels and mail.
Modern technology has saved my sanity. Steve and I having a long lie on Sunday morning, it’s 9am and my mobile telephone has that distinctive ring. I know it’s a FaceTime call. Simultaneously Steve and I say know who that will be. I click the phone and can hear the joyous tones. ‘Morning, what are you doing in your Bed Granny’? ‘Having a got chocolate’ is my reply. We are having a three way conversation between our house (Steve & I) , Stuart & Alexandra, and Teeny & Grace. It’s fab, we all blather loudly, the girls can’t believe we are still in bed. It’s Sunday, I say in my defence. They have us laughing. Along the hall we can hear the dogs. They can obviously hear the girls talking and they are excited. Can we see Buddy and Bella please. I toddle Along the hall. Bella is actually smiling. They are pleased to hear the kids. Morning Bella Boo, Morning, Buddy Boy, says Alexandra, miss you, the labradors tails start to wag frantically. Grace calls on Frieda the cat. Alexandra asks ‘Granny can you go out the back and say morning to Birdie please’. I go see the beautiful black lionhead rabbit. The girls are ever so happy. Right that’s enough I say, granny is wiped out now. I sit on the seat at the table very happy and blether away . I maybe can’t see them all in the flesh, however a video call like this makes the world worth living. We all chat say what’s been happening and what the plans for the day are.
Both girls had plans to play in gardens. Alexandra said she was going to be drawing and colouring in later. Grace was going to be playing games.
Hold my hand and Smile Each And Everyday
Alexandra drew round her hand in her notebook, she tore out the page. Left the page for me with the drawing. She said I can hold her hand anytime. She said on a FaceTime call to me Granny I would just love to hold your hand everday
I was so chocked up, it’s difficult to believe Alexandra has just turned 4 years of age.
At this difficult time in this crazy world we need to be grateful for what we have. Make the most folks.
As we all know and expected this Easter Weekend is somewhat very different. With most of us being in isolation and being asked to stay at home. I expected to feel lonely and miss the activities that I had been expecting to do and the people I was looking forward to seeing. However, there were a few folk that did some very nice act of kindness towards myself, Steve and my labs which made me feel very special, loved and happy. Certainly not lonely at all.
Just before Good Friday, my nurse was in to service my gastrostomy tube and change my dressings. As well as check on my well being, and see how I am doing. As my nurse was leaving that day she left an Easter card for Steve and I and doggie treats for Buddy and Bella – all in a lovely Easter bag.
I got a special FaceTime from my 4 year old granddaughter Alexandra to let me know she had drawn pictures for us. She had done a special rainbow for our window and would post it through our door. Her dad sent a text of her holding the picture. I was so excited to get it. Words cant explain how much we miss seeing her, She usually visits every weekend and when you are used to seeing a grandchild on this regular timing, this lockdown period feels like lifetime. She is my pot of gold at the end of the rainbow. I was in hospital for 12 weeks with sepsis and hardly saw anyone however I felt poorly and had no sense of time on many days. This is different. However, with the technology we have and keeping a positive attitude we can get through this. Chatting on FaceTime and sharing what we have done throughout the day makes me smile, we laugh and sing, I just love my FaceTime time.
We have had a relaxing Easter weekend. Writing, gardening (for Steve) some tv and lovely quality time together with the labs. I was in the Wetroom putting on my creams when I heard Bella ‘friendly barking’ so I ignored her. Half an hour later I went through to the kitchen to put on my feed. As I reached for the pump I noticed my mobile phone had several notifications. As I sat down to read them, I noticed one was a message from Danielle.
Danielle has been my friend for at least 23 years. We have been through a lot together. I know if I message Danz and ask can you please come here she will come. I have been there for Danielle emotionally and I know she will be there for me. Again I am so grateful for technology so we can chat ad text. So what did the message say? It said. “I’ve left something at your front door xxxx”. What was left?
The most beautiful canvas, of course it is zebras. And cakes for uncle Steve. He will love them. Tonight I will light one of Natalie ’s candles and give her an extra special thought, not that she is ever far rom my mind.
A massive thank you to my special people this weekend, you are what keeps me going. You all know me and what makes me tick. Why, perhaps its because I love you guys let you into my heart and you know what makes me happy.
Why zebra? Neuroendocrine cancer is rare. Zebras are rare. When doctors are getting trained they are told
when you hear hoofbeats.
Look for horses not zebras
Many charities and people with net cancer adopt the zebra as their mascot.
My beautiful rainbow picture all coloured in. Up in my window showing with pride.
We are approaching the end of March 2020 and this weekend we should be away with friends from the The Dunedin Chapter ,
I so enjoy being part of this group. It is our biker family. From the second we joined we felt part of something. A warm welcome always awaits us, a support network is available in variety of ways. Help with the physical Harley-Davidson® motorcycles; buying, servicing advice, etc. Things to do; runs, rallies, etc. Friendship; many friendly faces, great companions, lots of advice, etc. Socialisation; we all get together and have meetings, weekends together, nights out, lunch meetings, breakfast clubs, chippy runs, etc. All in all I love belonging to The Chapter. We are now on to our second Harley-Davidson®, I have been on motorcycles since I was under 5 years old, on the back of my brother when my feet couldn’t reach the footpegs. I have been a pillion to my hubby since I was 17 years of age and I’m now nearly 54. We have had motorbikes the majority of our married life. Fifteen months ago we thought we would dip our toes in the water and visit West Coast Harley Davidson for a look at the bikes and what they had to offer. before we knew it we had decided it was time to get ourselves a Harley, it was a little Street Rod. We thought best start small and not break the bank. Just to see how we would like the ‘Harley way of life’ and boy do we love it. While we loved the wee bike, it was just that, too small and So a few months later we traded it in for a beautiful fatboy low. We got this one at Edinburgh Harley Davidson
This weekend a trip to Aberdeen had been organised by our Harley Davidson enthusiastic friends. We were all getting together to stay a night in a hotel and have a night out and raise money for the air ambulance. The plans were, to take a drive up together on the Harley Davidsons if the weather was warm enough and I was feeling up to it, if not take the four wheels and book in to the The Craighaar Hotel in Aberdeen
I was so looking forward to going to Aberdeen. Due to my health, the neuroendocrine cancer, the carcinoid syndrome, the treatment I need and the fact that I get fatigued very easily I don’t go out that often. I find life difficult, some days a general task feels like I am walking around with a 25kg bag of sand on my back. Needless to say I am very familiar with my own surroundings and am used to being in the 4 walls I live in. I can be home for three weeks without crossing the door. My district nurses come to ‘service’ my peg. Change my dressings, administer my octreotide injection and deal with any other at home health condition I may require. They are wonderful and I couldn’t do without them.
Although I am used to spending time at home on my own, with the company of my two Labrador’s within my four walls I do spend quality time writing, which I enjoy a great deal and I have embarked on a course which I love the challenge.
Suddenly the world has been hit by an eerie storm, one which we have never seen the like before. The human race has been struck down with Coronavirus. The arrival of the Coronavirus is here. For a great deal of folk it has been fairly harmless, however for many it has proven deadly. To find out a little about coronavirus visit – https://www.nhs.uk/conditions/coronavirus-covid-19/
Countries such as Spain and Italy are ahead of the UK and have many deaths and have put in strict measures. Here in the UK, we have had to take on a different way of life. Schools have been closed, where possible people are working from home, people are instructed to stay home unless exercising, which is only once per day. Social distancing has been put in place, with everyone to keep 2 metres apart. All these measures have been put in place to try and Stop the spread of Coronavirus. This virus is escalating and getting out of hand, we need to self isolate and stop it. Many people have it, are in hospital, some very poorly and on Ventilators. It’s all such a worry. People are wearing gloves, masks and using hand gel in abundance. Hospitals are running short of ventilators. There are more people needing the machine that the country has; something has to be done.
A team put their heads together – staff from formula 1 Mercedes , staff from University College London hospital (UCLH), and a team from university college London to adapt and improve existing CPAP in a process known as reverse engineering. Basically they have helped create a breathing aid to help keep coronavirus patients out of intensive care. You can find out more at the following – Mercedes F1 team helps create breathing aid
Life has become very strange for many people, our country is in lockdown, bars, cinemas, restaurants and many shops are closed. Public gatherings are banned. Plus many more other measures are put in place. Some people feel sorry for themselves and are sitting at home whining and moaning, complaining they are bored and wishing they could get out of the house. Whilst its understandable that they may be bored, sitting at home when they are used to working several hours per day and keeping busy. Or going out and having fun, playing sports or going to the cinema, etc. However, these restrictions have been brought in for our own good and it won’t be forever. We should take time at home, learn a new skill, cook, draw, do a bit of gardening, enjoy reading a book, do some knitting or sewing, play old fashioned board games. And most importantly our thoughts and prayers should go out to people that are in ICU beds in hospital, on ventilators, fighting for their lives. This virus not only attacks the vulnerable like me, or the elderly like my 87 year old father, it sadly took the life of a young lady of only 21 years of age with no known underlying health conditions, it also took the life of a 54 year old doctor, the youngest person to die has been 18 years of age.
I did read a couple of pieces of good news the supermarket Asda is donating £5 million to fareshare and The Trussell Trust to help the country’s most vulnerable people through COVID019 Asda will prioritise access to stores for NHS staff as of next week every Monday, Wednesday and Friday 8am – 9am in larger stores. Well done Asda
I know the next few weeks are going to be very trying for us all. The NHS are doing a fantastic job in looking after the patients in the hospitals, at home, etc. Carers are looking after the vulnerable the best they can. Supermarket staff are stretched and pushed to the limits at times, the shelves look like its christmas, with the exception its not happy, clappy cheerful customers, its frightened folks walking into the unknown.
For me tomorrow Ive got my amazing district nurses coming to do my dressings, service my tube and give me my two weekly octreotide. Tomorrow the nurses will be gowned up, masks on. Whatever will my labradors Buddy and Bella say, they won’t be getting their treats for mummy being a good girl and getting a very large needle jagged into her.
Over 6 years ago I went to an information day hosted by Scotland’s Neuroendocrine Cancer Charity; The Ann Edgar Charitable Trust I went on to go to support meetings every month. There is a group of us that have became friends and a firm support to each other, which is lovely. Some days its good to be able to talk to someone that you know really understands how you feel and you never feel patronised when talking to each other and at times you really need that ‘I know how you feel’ conversation’
The first person I saw at the information day was such a lovely chap and his wife. He was smiling from ear to ear and guiding all participants that were going into the conference. Despite having never meeting the man before you couldn’t help smiling back, he had the kindest gentle smile. He would stretch out his very long arms and direct you into the room. We have became friends very quickly and seen each other at most meetings. There is a nice core number of us that try and get together and blether and spend time together. I have had help organising the tea party and we all went out to the theatre, day out on the barge, a night in my local pub, singing songs and doing magic tricks and said friend getting up and helping out with rope trick – oh boy we had so much fun. Norman was twenty years older than me and called me the youngster. I felt he looked out for me in a way when we sat together, it was his nature. When I organised the tea party, and my goodness what a lot of work went into it, he said, now young lady before we open the doors to the public you get half an hours shut eye. Sometimes he would quietly talk and other times he would stretch his long arms like a giant and bellow what he wanted his audience to hear. Norman’s first words to me were always and how are you today my dear, is life treating you kindly? He would have that big grin on his face and it would warm my heart. Although Norman was his own man, him and his wife came as a pair and they were very much together. One of those most beautiful relationships each partner knows when the other has had enough and needs to leave, when they are tired, hungry etc. They have the best tales to tell from their travels on holiday. They separate across the room and yet communicate with just a glance and before you know it they have made a decision and you are saying cheerio to both of them, see you next time.
This blasted life limiting illness at times imprisons us in our houses, makes one feel so ill you can’t do a thing, medication, hospital appointments, etc become a way of life – however, meeting each other and sharing some of the good and the bad really helps me get on with my journey.
I found out sad news last week, my pal passed away. Norman was diagnosed with neuroendocrine cancer 13 years ago. I feel privileged to have known him and spent time with him and Margaret for the last 6 years. I was diagnosed with carcinoid syndrome 10 years ago, whilst a sad occasion like this leaves one thinking about our own mortality, I count every day as a blessing and am happy with the treatment and care I’m getting from my consultants, doctors and nurses.
Today was Norman’s funeral, unfortunately with the coronavirus the world has gone a little crazy. We are on a lockdown situation and are living under certain restrictions. Funeral services are allowed to go ahead, however are restricted to immediate family. I was able to watch the service on a live podcast. I sat in the comfort of my own home in front of the open fire and watched Norman’s funeral service.
Norman Boe was The First Person with Net Cancer that made me smile 🙂 and I will miss him so very much. Thank you for being my friend.
“Go my friend and enter into eternal joy and peace, dance with angels in eternal light and love”
For most of us life is hard enough. We all run along in the treadmill of life in our own way. Me, I try and make the best of it even on the bleakest day. The last three weeks have been a struggle. My father is in hospital, he has had life saving open heart surgery, his surgery was fairly extensive; a triple bypass, a valve replacement and a pacemaker. He has been in intensive care, moved onto high dependency and now graduated to the specialist cardiology ward. He still has a long hard journey ahead of him. My Papa is made of strong stuff, he will fight all the way. I am finding it hard, seeing him lie in the hospital bed looking so frail and lost when I am so used to seeing him going around the family home like a busy bee. To let you understand my Dad is not one for sitting down, as you would say he has a ‘glass ass’. He likes to keep busy, making sure everyone is looked after when they visit him. There is always coffee and a sandwich on offer.
Ive been feeling a tad worse than usual over the last few weeks too. On the medics advice Ive increased my steroids. Whats keeping me going and giving me strength? Love. From particular special individuals: my hubby Steve, my sons Tony & Stuart and my granddaughters Alexandra & Grace. They are my shining light, all of them fill my heart with warmth and love. They light up my life even on the darkest days. And make me smile – Always. I love them so much and am so grateful to have them in my life.
I had an appointment at the Western General Hospital with a consultant I have never seen before. The Team she is with is The PACT Team. This is Patient Experience and Anticipatory Care Plan Team. The main purpose of the meeting was to discuss my health problems and for the consultant to take notes and later write up a care plan which can be accessed by A & E staff and out of ours doctors, to better understand my health problems and my preferences. Once the plan is written up a copy will be sent to my consultants, my GP and myself.
It was rather a daunting experience, chatting about any possible imminent admission to hospital. The consultant was lovely, and she explained everything. It gave me every opportunity to talk and ask questions. We discussed what brings me into hospital and what is best for me and what staff would benefit from knowing. She asked me some very personal questions and I gave her truthful answers. It was easy to chat to her, she was kind and caring. She turned the computer screen round so I could see what was type written about me. There it was in black and white: various medical conditions that affect every day life. Just for a moment it was once again like hitting that brick wall. I looked at the screen the words were a blur. Seconds later we were chatting…………
Do I think I will benefit from the care plan? Hell, Yes!! The Doc took note of all the problems; e.g. carcinoid syndrome, profound hypoglycaemia, labile blood pressure, gastrostomy feed tube (leaks), poor co-ordination, photosensitivity, hydrocortisone replacement therapy, lanreotide injections every 21 days etc. etc, etc. And she made a note of what staff need to have available for me. Fingers crossed Im not in anytime soon.
Depending on what I’m in hospital for and how poorly I’m feeling has an awful lot to do with how many visitors I can tolerate, or need, and who these people are. When I was in The Royal Infirmary with sepsis after getting my gastrostomy tube fitted the first week I felt really ill, was in high dependency and only had Steve visit, when I started to feel slightly better my boys, brother and sister visited too. As I progress, my nieces, nephew, cousin, godson and friends visit. My goodness just shows you how long I was in hospital, the amount of visitors I had. The chatter kept me going, news of what was happening in the outside world keeping me informed and entertained. Although I do have to admit, on the days there were between three and five visitors at my bedside I found it quite difficult. I was tired and couldn’t keep up with the conversation. One to one I can handle, more than one voice in my lug and the noise is scrambled. I find myself lying back and letting my visitors converse between themselves. What some folk don’t realise is both talking and listening can be very tiring. A twenty minute conversation can deplete me of all my energy. Leaving no resources in reserve for later. Even for someone as gabby as me a day of complete silence can be a necessity to get those reserves firmly back in place. Not all days are like this, Some visits are much needed and a total boost, they are the brightest part of the day and when I share some of my most intimate statements. It’s the actual blethering that builds up my energy, gives me that extra oomph. 😀😀
My last hospital stay was only a couple of weeks ago. I was in Ninewells, Dundee. I was feeling a tad rubbish and tired. I was in a friendly room with another five ladies. My first visitor was on the Sunday night. It was my friend Susan. We hadn’t seen each other for quite a while. It was so fantastic to catch up. There was so much to talk about. Susan was diagnosed with breast cancer just four months ago. She got the diagnosis two days before Christmas. Courageously she has fought this awful disease, had her breast surgically removed. We had so much to talk about. We chatted away, shared experiences, talked about our children and spouses. Laughed out loud that the others in the ward knew we were happy to be together that evening. The wonderful thing was that when either of us said we understood how the other was feeling we really did know how each other felt. We trust each other’s judgement and certainly don’t feel put out by offering advice. Susan made jokes about ‘feeling a right tit’ – I bantered back and we laughed loudly. You could see the other patients in the ward looking. They obviously heard our entire conversation, after all I take after my mother talk fairly loud and there’s not much distance between beds. There were two ladies in particular wondering is it ok to laugh?, should I join in at all? They were intrigued in what we were discussing. On the odd ocassion you could tell there was a thought that popped into their head, surely Elizabeth shouldn’t be saying that, or That lady visiting – is she joking. Susan has chosen not to go for reconstruction surgery. However, she has picked up her new boob. It sits perfectly in her bra. And from the outside with a bra and tshirt on you wouldn’t know which one is the new addition. She proudly stood hands a kimbo whilst I admired her new figure. We discussed how it looked and felt. What a fantastic option it is for a woman in her early 50’s. She did get offered surgery with build up breast at the same time as the mastectomy. This would have meant several more hours in the operating theatre and longer recovery time. For Susan she made the right choice. She is comfortable with her body. Her hubby is supportive, loving and caring and her daughters have been just grand. Friends have rallied round and supported, helped out and visited when required. Susan is upbeat and doing well and has already gone back to work. We talked about all this too at the visiting. As we blethered, one of the other patients came over to my bed to talk to us for a couple of minutes. Jan has leukaemia, I think it helped her to see us joking and laughing. Taking a happier outlook on life no matter how bleak things can seem at times. This was one of those days that the visitor most definitely recharged my batteries and gave me that zest for life that we all so much need.