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.
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
A couple of years ago when my granddaughter then 2 had her first playdate at our house with my very close friend, Danielle’s daughter, Ella both girls played and had fun like all toddlers do. However as young as Alexandra was at the time she was caring and compassionate enough to notice that Ella was different from her. Ella is deaf, she has cochlear implants. Little did I know this first playdate would lead to us Sponsoring a hearing dog.
The girls at that young age played in the sitting room with toys and formed a bond. Two years later they are running up and down my hall laughing and shouting with dolls in their hands. When Ella left with her mum and dad Alexandra asked me about Danielle and us being friends. I told her we have been friends for a very long time, and told her you look after each other no matter what when you are good friends. I told her Danielle sends me messages and phones me to ask how I am. She visits. We all have fun, and now brings Ella to come see her. We spoke about Ella’s deafness, she said it must be horrible not being able to hear everything all the time Granny I am so sad for her. I told her not to be sad and look at how happy Ella is with her family and when she plays at ours. I think this helped.
It was raining on a Saturday afternoon and Alexandra was visiting with her Dad. She likes to be like Granny and type a story on the laptop. I had been on social media just prior to her going to use my laptop. She takes a seat beside me, she patiently waits till I close my pages. On the timeline of my facebook page there was an advertisement for Hearing Dogs for Deaf People. Oh look Granny, a Labrador like yours, but its black, says Alexandra. This stops me in my tracks. I look at what she is noticing. I close the page and let her type away.
Later that evening I go on the site Hearing Dogs for Deaf People and sponsor the black Labrador Winnie. This money will go towards training the puppy and will help change a deaf person’s life.
Alexandra now has a beautiful little cuddly pup with the familiar maroon jacket on. As soon as she opened the box she looked at all the paperwork quickly, lovely photos Granny. She quickly takes out the cuddly dog, runs along the hall and comes back with a stethoscope we need to check this puppy over. She loves the idea of having a notebook book and pen, so like my Mother. The certificate and postcards are brilliant. Alexandra has already looked up the website and seen other photos of Winnie and progression videos, her out walking, etc. It’s fantastic. Helping the charity, putting a good dog to work and most importantly helping someone who needs it – match them up with a dog and giving them valuable lifelines at times, for example Winnie will alert her new owner if the smoke alarm is going off, if there is a sound coming from the baby monitor.
I know how much I value my labradors. My lad, Buddy knows when my cancer is misbehaving. When my blood sugar has dropped too low. If my heart rate is wonky. Carries my feed items. Bella the companion Labrador, she is a treat to have, carries clothes to washing machine. Carries items along our 40 foot hall. Some days it can be a long walk for me.
If you have ever thought about sponsoring a dog I can highly recommend it. As someone who depends on a dog I know how valuable they are. I also live with a hubby that has issues with his eyes. He has had 10 surgeries to his eyes for detachment to his retina. He really is extraordinary. He pushes himself. Tries hard, still works, has a wonderful vision in life.
After my appointment at The Western General Hospital in Edinburgh my hubby was patiently waiting for me. He picked me up in the convenient pick up drop off area outside the hospital. We usually go together, however do to Covid, I was restricted to going myself. We made our way out of the hospital grounds and got ready for our Drive through Edinburgh.
As we drove along Crew Road there were works getting done and the road was closed towards orchard brae forcing us to turn left. We made our way along the road and passed the police training college, saw a couple of dogs in the field and then passed Broughton High School, I had a memory of going to the old Broughton High for health promotion talks, and remember proudly going to the police college with Arthur, when he got a commendation award; what a lovely day that was.
Driving through Stockbridge. The sun was shining, there were hanging baskets flowering beautifully outside many of the elegant Victorian and Georgian houses. This bustling vibrant area on the water of Leith is filled with speciality and charity shops, and delightful cafes and pubs. I love Stockbridge; the new town is my favourite area of Edinburgh. If I lived in Auld Reekie this is the locality I would choose to live in.
Cruising along George Street I saw the changes that were happening over time. What establishments are still here, and what has ‘disappeared’ from the high street. The Standing Order was the first building that jumped out at me. All over the world there will be many well known financial institutions that are now coffee shops, or pubs or restaurants, somewhere for folk to sit and chat. Rest their weary bones and share a story or two along with a drink.
As I headed to Southside Edinburgh, I passed a block of flats that were on a corner site in Newington area. This site used to be a Ford Garage that my sister worked in the accounts department. My friend rented a bedsit on the main road when we were at university.
Gosh Helen finished up at the Garage over 40 years ago and Jennifer rented the bedsit in the mid 1980’s. Jennifer visited me yesterday I was telling her about my journey and reminiscing, we started chatting about her accommodation hunting when she came down from Calendar to study in Edinburgh…….
Jennifer and I met at uni, we became friends the first day of term and have been stuck with each other since. Jennifer came down from Calendar and needed accommodation, the uni gave her some recommendations. She came to my parents armed with this A4 piece of paper. We were going to the addresses. My brother Albert dropped us at the first place on the list, it was near the shopping centre, he would go shopping we would view the room. Oh my goodness; the room was ok, very basic, shared facilities which werent so nice, and the room mates were less desirable. So lets just say this place was a big fat no. We tried a few other places on the uni’s recommendation. Absolutely non suitable. My Mum brought out The Scotsman. https://www.scotsman.com We looked in it, there was an ad for a Letting company in Home Street, Edinburgh.
Off we went to Home Street. We walked in to this office with a white haired lady with 2 dogs surrounded with so much paperwork. I actually felt like I was going for a seance. I can tell you Jennifer and I felt frightened, why we didn’t know. The business was ‘real’, the staff were genuine, informative and very pleasant. And they had dogs, something I especially love. I think it was just the fact that the white haired lady was rather eccentric. The room had a creepy feel. However, the lady was very kind to us, she explained what properties she had on the books and what she thought was suitable. She explained locations and terms of payment etc. She thought the room at Newington would be suitable, told us there were already some young ladies in the building and the location is lovely. Big bonus, the landlord was a really nice man. We were sold. Sounded ideal for Jen.
We made our way from Tollcross to Newington. Met by a raven headed gentleman. True to her words. The whole property was in good condition. The bedsit on the ground floor had its own kitchen, it was ideal. No sharing, no messy dishes, etc. Jennifer decided to rent it. As friends it was ideal, not too far from uni and only about 3 miles from my parents house.
Many properties have changed hands over the years and places we have got comfortable going to are no longer there. However, many of these alterations are good news and society is reaping the benefits both socially and economically. As the saying goes out with the old and in with the new.
Yesterday was November 10th. On the Cancer Calendar this is World Net Cancer Day. In Edinburgh the Scottish Charity, The Ann Edgar Charitable Trust hosted a forum at The Novahotel. And what a great informative event it was.
After being offered a beautiful buffet lunch, chance to meet other patients and folk interested in nets David Drummond, chairman and partner of the late Ann Edgar opened the show with a warm welcome. We were then given presentations from great speakers:
NET specialists from throughout the UK gave up their Sunday to give presentations. Offered their expertise and answered questions to patients, families, friends and people generally interested in NETS.
Margaret Boe – The Ann Edgar Charitable Trust (TAECT) . Trustee and wife of Net Cancer Patient, Norman Boe. Margaret is retiring and handing over the baton to Priscilla Fernandez.
Katie Gibson – NET CNS at Western General Hospital, Edinburgh, Talking about patient and carer support in Scotland
Lucy Dornan – NET CNS at Beatson Oncology, Glasgow. Talking about PRRT programme in Scotland.
Nikki Jervis – NET Patient Foundation. Talking about patient wellbeing.
Professor Mark Strachan – Endocrinologist, Net Specialist, Western General Hospital, Edinburgh. Talking about whats new in NETs.
Dr Lucy Wall – Clinical Oncologist, Western General Hospital, Edinburgh. Vitamin Research Project. Results to be presented in UKINETs.
Mark Strachan and Lucy Wall set up the first NET clinic in Edinburgh 14 years ago. Fourteen years since the first Net patient walked through the doors, with a great deal of progression since then. All for the good of course.
On the way to the event I had a sneaky look at my smart phone. An Apple I Phone – I have stayed loyal to Apple, the great Steve Jobs lost his battle with NET Cancer in October 2011. As I looked at my twitter feed I saw my friend Kath had promoted awareness of the disease in her local paper. Well done girl. I can relate to the piece so well, as I am sure many people with a NET diagnosis can . If you would like to read Kath’s feature please click on the link
On entering the hotel I turned my phone off, no interruptions. However, at the coffee break I turned on my phone. A couple of messages. From each of my sons. Both checking up on their old folks and letting us know they are doing ok. One of the texts came with a photo of Granddaughter, Alexandra – she found her Daddy’s scalextric at our house and was loving playing with it. Knowing our boys were thinking of us warmed my heart.
As we were packing up to leave we got in the car and I turned my phone back on. Stuart and Alexandra called to say Alexandra was going back home and we would see here Thursday. Her Wee voice echoed in our car can you hear me Granny? When I let know I could she blethered away. She said I helped my Daddy put your lights up – they are very bright. Then she said I love you Granny and I love you papa see you after nursery xxxx
friendship mean to you? How do you define a good friend? I guess we would all have different answers. What’s important to me does not necessarily sit high in the rankings for you. We also have friends and ‘friends’. There are those that will be by our side for the rest of our days and there are work chums, social meet up buddies etc. There are friends we will never meet in person; social media hook ups, pen pals. We can build up great relationships and share common ground, learn all about their country, etc. The support that can be gained from a friend that you will never meet in person can be invaluable. The fellow patients and carers/friends/family that I have met through the support network charity The Ann Edgar Charitable Trust has been just fantastic. We meet , talk about all sorts, support each other and friendships have developed. To be honest I never thought I was one for sitting in a room full of sick folk, that want to chat about their condition, but actually making the effort to go out on a chilly evening, have a blether and a cuppa and most of the time a jolly good laugh. I usually always go home in a much better frame of mind and feeling a whole lot better than when I woke up that morning.
For those of you that have read my blog you will know that family is the most important thing in my life. I’m the youngest of five. The closest to me is Hazel with a 6 year age gap. The other 4 are closer tother in age. Mum and I developed a great friendship, from a young age she took great interest in activities at school etc. I remember running home from school eager to tell her all about my day. Mum and I spoke every day, even when I got married. Perhaps it was just a short phone call, but the blether would take place non the less. Mum died 5 years ago there is not a day that goes by that I don’t think of her and miss that conversation.
I have talked in previous blog posts about friends. As someone who can no longer drive and with numerous problems such as fatigue, hypos, pain, etc. Friendship is extremely important. Now as adults, I’m no longer that kid hanging on to my sister Hazel’s skirt and we are great pals with wonderful support. Support and help has came in different ways from different ways . Two friends that I value, really care about and have been particularly helpful over the last year are Sally and Louise. My husband, Steve, is the best friend you could ask for. We spend a lot of time together and never seem to tire of each others company.
There is a pal that I haven’t spoken about in my blogs. On leaving high school I decided to go to university in Edinburgh. on my first day I met this quiet country girl from Callendar. We hit it off instantly. At the end of year one I decided to leave auld reekie and study in the city of discovery, Dundee. This in no way hampered our friendship, we remained friends through studying in different cities, marriage, the birth of both of us having our sons. Both of us are god mother to our first born. Tony now 30 and Scott in his 20’s, my how time has flown. Jennifer was sitting on my sofa a couple of weeks ago on a Sunday afternoon chatting away with Steve and I. Just the three of us, it could have been 34 years ago, with the exception of some of the conversation subjects. Amongst other things, We had the 4 lads to talk about, Tony, Stuart, Scott and Cameron. Over the years Jen has been a great loyal friend. Someone I can trust, share a problem or a secret with. In the early 1990’s when I needed breast surgery, Jennifer came early in the morning to give me a lift to the hospital, physical and emotional support before the op, just what a pal needs. While my poor hubby was rushing around with two youngsters. When Steve was getting his radiotherapy a trip to the country club for one week was organised by Jennifer, really appreciated it. Since this diagnosis, Jen has been a great pal; known her place. Text enough, but not too much. Visited when I’ve been ‘ill’ in hospital. visited us at home but kept away when she thought we need space. You know your pal is your pal when you don’t feel you have to put on a face, or tidy up for them visiting. You aren’t embarrassed if you can’t afford the bill and you can tell them. We are made of similar cloth and I’m definitely not afraid to say anything in front of Jennifer. Still a pal after all these years. Thanks.
Folks have been inking their bodies for much longer than anyone can imagine. The oldest discovery of tattooed human skin to date is found on the body of Ötzi the Iceman, dating to between 3370 and 3100 BC. Today many people get a tattoo in celebration of the birth of their child, remembrance of a loved one, and of course expression of art. Me myself, I have never been attracted to the idea of tattoos in the slightest on myself, however, I have no objection to anyone else having artwork on their skin. In fact I rather admire the work the tattoo artist work does. The first male love of my life, my Dad has one tattoo; he got it when he was in the army, it has a thistle on it and the name of my mother on it. I used to kiss it and look at it lovingly and rub his arm and think to myself if someone loves me like my daddy loves my mummy I will be one lucky lady. My And yes people for the record this has happened. My hubby does have three small blue tattoos on his tummy, they are markers the radiotherapy he underwent for his testicular cancer. In 1996 this is the way they set up the simulation and marked the skin and the patient is left with permanent reminder. Mum and Dad were married for 60 years before Mum died, Steve and I have been married since 1986, following in their footsteps; happy with that.
Both of my brothers, Albert and Brian have tattoos, and my sister Helen has a tattoo. After my our Mother passed away. Albert had an image of Mum on his arm. Helen got a tattoo in remembrance of Mum too. We all cope in different ways with death and honouring loved ones.
I have a few friends who particularly liked to express themselves one way or another. Whether it is eclectic dress, many colour hair changing, piercings, and the main discussion of this post getting a tattoo or five.
One of my friends particularly likes to get tattoos. Louise is a very close friend who has became one of the family. Lou and Keith, got one of Buddy and Bella’s pups from the first litter, he is the image of Buddy, they call him Gunner. When the second litter came along goes without saying another puppy had to join their household. Harris, now one year old may look like his Daddy, but majority of his characteristics are of his Mummy, Bella. Lou, has been wonderful over the last three years, visits plentiful. Giving lifts to hospitals. Helping with fundraisers for Scotland’s Net Cancer Charity – The Ann Edgar Charitable Trust. What fun we had at The Tea Party and The Music For Nets Night.
Lou is a busy lady, but if she says she is going to help – I can guarantee you she will be there. The one thing I found harder than anything else was asking for help. When I had to give up driving the reliance on getting a lift is essential. The spontaneous hypoglycaemia and exhaustion means I like to plan outings in advance. Not living on a bus route isn’t ideal. But Ive got to admit, car travel is usually the best form of transport. So asking for help….. with Lou, you don’t need to ask. For Many things, hubby Steve and I go together. Both our sons, Tony and Stuart assist as and when needed. My sister hazel helps out when she can too, which really lightens the load.
Lou messaged me one morning Ive got something I want to show you. Its a present. But its only for you to see. I really hope you like it. I asked if she liked it. She answered, oh i’m pleased with it. Left me a tad bamboozled and yet looking forward, as always to her visit.
Later that morning In comes the smiling face, Buddy and Bella run up the long hall and cover our guest in a mountain of blonde hair while dutifully competing for a slobbery snog. The kettle goes on as always. I wait in anticipation for the ‘surprise’. As I bring through the teas and coffee Lou takes off her sweater for the unveiling. As I catch a glimpse of what I can see on her arm I almost drop the cup. On her arm she has had a tattoo. And what is it? A Zebra. I see her lips move, I can hear the words come out in an almost muffled way, I got this for you. For the first time in my life I can almost say I have a tattoo. My heart skips a beat and brings a tear to my eye. I had no inkling, what a lovely thing to do for me. And to raise awareness for net cancer. Thanks Lou.
Why did she chose the Zebra?
In medicine, the term “zebra” is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers. “If you hear hoofbeats, think horses, not zebras.” … This because in the medical community the term zebra is universally used to reference a rare disease or condition.
You can find out much more about neuroendocrine tumours, net cancers. And particular support in Scotland by visiting Scotland’s Net charity. This charity was set up by my consultant and a patient, at Edinburgh’s Western General Hospital. Her name was Ann Edgar. The charity can be found at http://www.taect.scot
Well today its my birthday. I am half a century – the big 50. Many folk hide their age, dread being fifty and pretend their younger than they are. Me, I’m happy to be here. I feel privileged to say I have hit such a milestone. My fortieth decade was a mixed one. There was many happy events, lots of love and laughter which keeps me going. However, I also had to face a few difficult life challenging times which were so difficult.
Happy to get up the castle
I had many occasions to have cause for celebration. Both my sons attended university in this decade furthered their education. Our delightful labradors, Buddy and Bella came into our lives; the unconditional love they give is amazing, I really can’t imagine my life without the hairy beasties. We delivered a litter of puppies from them, and have kept in touch with puppies and owners. Now made some lovely friends. Some wonderful children have been born in the last ten years who are really close to my heart. There have been a few very happy weddings. I have mad many new friends. Need I go on. Life is precious and for living, it is all too easy to get bogged down with our problems. On a personal level Steve and I are as much in love as we were when we were teenagers. I believe this is my weapon – Love.
The one thing I am certain is in the last ten years I felt loved. The first five years were very difficult, I suddenly lost 3 stone in weight, felt very ill, and no-one seemed to know why was wrong with me. It took a while to get my health situation sorted out, but with the love of Steve, the boys and my parents I felt secure. I’ve had a few hairy moments been in hospital with septicaemia for 7 weeks, and boy was that scary. Now got my gastrostomy tube fitted. Life isn’t always easy with a stoma. Ive been admitted with several infections. However, its much better than it was, I have a fantastic medical team and nurses that come to the house which is fantastic. And I’m still here to tell the tale and thats whats important.
The second half of my forties were slightly more challenging than the first emotionally. Amongst other things: A very close uncle died, my youngest son had extensive brain surgery, my Mum died, my eldest son had meningitis, hubby had eye surgery for detached retina. But you know what we got through it all. The boys are doing well. Steve still has problems, and only had surgery last week again, but the brave bugger is dealing with it the only way he knows – full of courage – like a lion. It will be three years on the 9th August that Mum passed. I miss her every day. We had one of those relationships that we spoke or text every day. Mum wouldn’t want me moping around. She was a great character, a beautiful woman that I looked up to and admired.
One day in the consulting room at the hospital my professor handed me a card. It was for the NET Tumour Support Group that I now meet regularly with. . We have all became great friends. Sadly, one of the friends that I was very fond of passed away last year. However, I would rather have spent time with her, laughed, cried, etc, even for one year and then felt the pain of her loss than not have met her at all. we all meet regularly every month and have a great time. Its not doom and gloom, we meet at each others house or in the pub. Partners, friends, carers go too. You can have a look at the charity’s website to see what work they do: www.taect.scot I’m looking forward to helping organise the tea party in Pencaitland in November for NET Cancer Day.
I’ve had cards delivered for my 50th birthday. Including cards from friends in the Net group which is lovely. One of my friends in the group, Barbara was very thoughtful, because my eating is restricted, she made me a flower birthday cake. I could have cried, its so beautiful.
Looking forward to spending my 50’s with Steve. Doing what I enjoy. Taking photos, writing, cuddling my labs, crafting, etc. My big aim is to get back into baking and cooking, just because I’m not eating as I did doesn’t mean I should stop what I love. I got a beautiful mixer last year and boy is it going to get its ass worked off now that I have got over that hurdle. Have a great weekend guys. After Ive finished my treatment today My hubby is taking me to The Edinburgh Festival tonight and tomorrow night. Tonight its Craig Hill, tomorrow its Nina Conti
You look great – that’s the words we all long to hear. We all want to look our best. Whether we are nipping to the supermarket, having a lazy day, or going out for dinner. The last thing I want is folk to be surprised that I look “normal”
So why is it that there are times when people say certain phrases to me that can set my tummy into turmoil and make me feel guilty for having an illness. These words are usually said in such an innocent manner and no malice is ever meant. Sometimes I can get upset by what has been said to me, regardless of how harmless the conversation is. The person paying the compliment is usually always blameless.
The conversations and body language that are directed to me are intended to be kind and gentle. A gentle hand stroking my arm and the words that first come out how are you keeping? One of the ladies in our support network group particularly doesn’t like this phrase. I have spoken to many people whilst I have been in hospital and yes they are affected by what’s said too. Certain words affect folks more than others, the word keeping was one that some found hard to deal with. I’m not quite sure why, as I say it’s always said with such niavity. Perhaps it’s because the word keeping is associated with custody and criminal. Many people with with chronic illnesses have life changing situations after their diagnosis and can often feel like a prisoner in their own home and need the help of others. Maybe this is a possibility why keeping is not liked by this person. I can’t go out on my own, and I’m very grateful for the help I get, not feeling sorry for myself – promise 😘.
Most of the time words said don’t bother me too much at all. I can put them in a box and breathe. What really drives me crazy is the tone that the conversation is spoken to me in. The very pitch can affect my mood, and hence a knock on affect on my health. Most days I will banter and have fun, if something is said in a teasing manner I will take it like water off a ducks back. However if I’m having a difficult day the slightest thing will reduce me to tears.
So why do we want to look good? – why not? I personally want to look like my old self. I want to be my husband’s wife 💕. My wonderful staff at Ninewells hospital in Dundee have specially manufactured coloured cream for my skin to put on every day. The transformation is fantastic. It covers every blemish, wrinkle, gives me a lovely colour. And it looks so natural. Once it’s on properly you wouldn’t know I had cream on. For me it takes a lot of work to look “normal” – I smear my entire body in several creams three times a day. Steve’s cousin Anna commented on how much work it was and how good the transformation the Dundee cream made – this actually made me feel good that she was so open.
The good thing about the chronic illness. It’s on the inside. We can cover it up. Put on the war paint and put on a smile 😀😀 it’s good to smile, it’s infectious. Smile and the world smiles with you. When you are all dressed and tried your hardest to look good, whether you are dressed to the nines or in a tracksuit, and have make up on or not. If I am happy I always look better. I know I am loved and this certainly makes me happy. It can be hard to look good for anyone at anytime but I will say my family and friends do make my life much better.
I love to buy and get treated to nice clothes and accessories. My favourites are Ragamuffin, Fatface, Michael kors, Pandora. My hubby, Steve is so good to me. Steve wants to treat me and make me feel good, he is the one that sees me feeling so rubbish at home. And puts up with my grumpy pants sulking moods 😂😂 – for my sake just as well he loves me.
When Pamela Ter Gast and I made friends on Facebook four years ago. Little did I know such a strong friendship would develop. And just how much we have in common. Our friendship began with a shared interest of neuroendocrine tumours. Our chatting very soon veered to a personal level.lkkkkk Pam, Dutch born now living in USA with her beloved Boo, has two kids – like me. Only I have two lads, Pam has one of each; a girl and a boy. We hooked up with two other Dutch zebras: Beth and Didi. The four of us formed a close bond; sharing stories, we laughed and cried together. We call ourselves the musketeers. Of course we are alternative musketeers – Pam: Winnie The Pooh, Beth: Piglet, Didi: Eyore and little old me:Tigger.
Pam was a very gutsy lady who I admired greatly. You could always rely on Pammy to make you feel better. When times were tough for any of us we would take a virtual travel together. We posted our travels on social media and many people actually thought we were actually away to beautiful sandy beaches, climbing mountains, visiting castles and distant shores. Now that would have been a treat 😉.
This beautiful lady showered her kindness and picked me up on days I felt pdown. She always had an uncanny knack of knowing without asking……and offering that shoulder. Pam did not stop at friending me. She would drop messages to the men in my life. When my mum passed away she was fab and sent messages to the boys, when Tony had meningitis she sent him a few messages asking how he was. And on one ocassion when I hadn’t posted on Facebook for a few days she sent Steve a message saying she was worried she hadn’t heard from me and asking if everything was ok. As friends we sent each other photos, pictures, etc. some would be funny cartoons to make us laugh others would be photos of landscapes or flowers.
This is a photo Beth took in Holland and sent to Pam. She loved it.
Beautiful Pam with the infectious smile. Always looking on the bright side of life. Sharing a conversation brightened my day.
Pam wanted to raise awareness of neuroendocrine cancer. And whilst she bravely fought her own battle, she took time out to educate the public. Giving talks, posting on you tube, etc. Ever so proud of you Pam. 💕.