Over the last few months life has certainly had its up and downs. As usual getting the usual carcinoid syndrome treatment. Not feeling the best at times and all that comes with it. However on the plus note covid restrictions have been a lot better, I have seen my family much more, Steve has been on the Harley-Davison®. We managed an evening out to see Del Amitri live in Edinburgh, at the Queens Hall. Our youngest son graduated from university. I got head hunted for a job from a very reputable company. We have a lot to be grateful for. As I was sitting working on my computer my phone gave a familiar bing. I looked over, it was letting me know my screen time was down. Most likely because I have been writing more this week, and I have gave the social media platform Facebook a wider berth over the last few weeks; mainly due to seeing the same old…… Although I have to confess I did see a few things on it today that made me smile, and other things that put me off…… on reading down the page I thought what has made me smile today?
Firstly waking up and being alive makes me smile. Every day is a bonus. I love where I live and who I live with. I open the curtains, roll up the blind in the morning, look out my bedroom window and the view of my back garden is a huge field where I enjoy walking my loyal Labrador Retrievers.
My boy Buddy is my assistance dog. He takes great care of me. Knows when my glucose levels drop. When my heart is misbehaving. He was such a great chap and tapped my nurse on the knee on Wednesday when she was attending to me, I asked her to check her blood sugar level it was sitting at 3.9 – he knew she was hungry.
My family not only make me smile they make me laugh. We have fabulous times together. Play old fashioned games, sit and talk, sing together, dance in the house and most importantly love each other.
Writing keeps me sane as well as makes me smile. Jotting down in a diary, keeping a journal, and writing for a living. I simply love it.
Listening to music most definitely made me smile today. Whether it is music on Apple Music, reminiscing about times gone by, Steve strumming his Martin guitar and beautifully singing along or Alexandra practicing her heart out on the violin or getting a guitar lesson from her Grandad. All those tunes give me such a warm feeling inside. It made me remember about that time……well will keep this one to myself…….
Remembering yesterday, listening to stories about the trip out pumpkin picking and dancing around the house and face painting.
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.
We are only half way into the month of March and already it has been filled with emotion. Despite feeling very unwell, burst balloon in my gastrostomy tube, more district nurse visits than normal at home; I have spent time with all 4 of my siblings, we have pulled together and gave the love back that was showered upon us as we grew up. February was difficult and March became emotional, in this year 2021 I certainly will not forget this month, with so many memories – most definitely a memorable month of March.
Just a few weeks ago my Daddy Bear admitted he wasn’t feeling too good. Mid February, we brought a bed downstairs and the GP came to his home to see him. My sister, Hazel and I were there. The news from the GP wasn’t good and Dad didn’t have long; she reckoned a couple of weeks. The GP arranged for the District Nurses to come in to Dad. They would visit every morning and then assess how often the visits on top. As one of five we arranged a timetable so Dad need never be alone. He had constant care. The team of district nurses were fabulous, their care second to none. The support they offered was outstanding, they brought endless supplies. Our uncomplaining Father they said was a privilege to care for. They also commented on what a superb system we had in place for looking after ‘our Bertie’
The service from the NHS we can not fault. The District nurse thought it would be a good idea to get a hospital bed for Dad, he would be more comfortable on an air Mattress and it would be easier and safer to attend to him with adjustable height and the ability to raise his head, etc. Nurse Wendy telephoned for the bed at 11am, it got delivered at 2pm that day, and the nurses came at 2.20pm to transfer Dad from his own bed to the hospital bed at home. Service with a smile.
When I was home and getting treated by my district nurse, she asked how I was and how I was coping – we had a good chat. In the conversation I mentioned where my Dad lived and the area the District Nurses covered. My nurse knew the nurses personally. She had worked with them and commended their great work, she told me my Pops was in excellent hands and they would take great care of him. And that they certainly did.
The district nurses, Mari and Wendy asked if we would like extra nursing help. This came in the way of Marie curie Nurses. They were amazing. Came in twice a day to care after Dad. Nothing was too much trouble for the delightful angels that came to assist with Dad’s care. However, they not only looked after our Father, it was very apparent they were there for us too.
Knowing Dad didn’t have long left on earth I wanted to treasure every moment I could with him. With my health I’m not normally up and ready to go first thing in the morning. And during current restrictions I have been home and not seeing anyone. However, this situation put a different light on things and gave me an inner strength. I would get up in the morning, take off my night feed, get into the Wetroom and get myself ready to go to see my Dad. Getting washed is one of the most essential exhausting activities for me. Turning on the shower, getting washed, sitting on my stool, looking down at my bright red flushed feet. Getting washed exhausts me and brings on a carcinoid syndrome flush. Right from the tip of my feet, all the way up my legs, over my trunk, up my neck, leaving me with a bright red face. My heart thumping; I can hear it banging in my ears. I lie on the floor till it calms down. Meanwhile my skin begins to dry. I climb up on the stool and get myself dressed. Put on my creams, including my Dundee cream. I go to the sitting room where hubby, Steve has done all my meds. Take them for the morning. Put on my feed. Sit for a rest to get some energy built up. And then all set to go to spend some time with my amazing Dad. My brother Albert will be there in the morning too to meet up with the nurses along with me.
We only got just over one week to care for Dad. It was the most precious time and a privilege to be part of. I thank the lord for blessing me with enough stamina to go to the folks; our family home, and be with Dad in his last days. The love I have for my parents pushed me to go on. After the love, security and safe feeling my parents surrounded me with I would give them it back ten fold.
The love and dependability my parents gave me always made me feel safe at home. This is something I have always strived for. To make sure my children feel safe and secure and that they can always come home. After Dad passed away these words struck a heart string or two:
Sometimes I feel lost
Remember I love you, and
Love brings you home
Who was our Dad? He was a caring, loving and kind Dad, husband, Grandad, Great Grandad, brother and uncle. He would give us kids his last. For Dad his family is everything. He taught us well, brought us up grand and fair. He worked very hard and built up his own business. We always had a car and we were the first folk in the street to have a tv. Mum was the love of Dads life, they loved to travel and enjoyed many trips abroad, including their beloved Germany, especially the Rhineland. They loved to take trips in the car , taking the grandkids out on adventures. When Mum died Dad gave up driving, he said he no longer had a co pilot to go out on journeys with him. Dad never got over Mum’s death, like me he just learned to live with it. Our folks not only provided a loving secure home for us five, but offered our children, and their children a place to come whenever they needed. They welcomed our friends, Mum chatted to them, offering a sympathetic ear and Dad could be found in the kitchen making a sandwich or ten. When it came to parents I reckon we hit the jackpot.
It is going to take me some time to as they say get my mojo back. When alone I find myself thinking of something that reminds me of my very happy childhood, or the assistance as I went to university, having my children, moving home, going into hospital, getting treatment, need I go on… and I am reminded of all the happy times I have had with my folks and then the sudden realisation that this will never happen again. My heart sinks and I am filled with dreaded fear. I have to believe that my folks are at peace, I was well and truly loved and so very privileged to call Helen and Albert my parents.
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
We may have differing opinions at the moment. Has the Government made the right call? Is the NHS doing a grand job? Should the kids be going to school? What really should be happening at Christmas. However, I think we can all agree to that regardless of our point of view everyone is needing a little festive cheer. Steve and I thought it would be a lovely idea to introduce to our community Santa Steve on his Harley-Davidson®
My husband and I don’t have the easiest of lives as many of my blog readers know. We have been through a lot in our nearly 55 years of life. Although the we both say we feel very lucky in life to still be in love after getting together in 1982. Absolutely blessed to live in such a fine county as East Lothian, even better that we have managed to secure a house in Boggs Holdings, Pencaitland and bring up our sons there, and now enjoy the sound of our grandchildren. The area is one of beauty and community supportive. Community spirit is important to Steve and I and we wanted to do something.
Since the start of the restrictions we haven’t been out on the Harley-Davidson® very much at all. In fact I have been at home and have only left the house on 7 occasions since April, and three of them were essential hospital visits. Steve has managed to take the bike out runs as and when social distancing allows; which has been great. We were talking about this and realised many people would be like me and would not have been out very much at all this year. Now as Christmas is approaching, children getting excited and looking forward to seeing Santa. There are many places parents cannot take their wee ones to see Santa this year due to the restrictions.
Steve and I are members of an organisation – this is the Dunedin Chapter is where many of us Harley owners get together and go runs together, etc. Seriously, a lot more to it than that. We love it. With the Chapter on Saturday Steve was going on the Santa toy run in Edinburgh – this is a charity run to drop off presents. He decided it may be a good idea to post on facebook to our local Pencaitland page would they like a drive by from Santa Steve in the afternoon after he had finished his charitable run with The Dunedin Chapter. Soon he got replies, Yes please.
I emailed the local police station, who were fantastic and called Steve right back that day. Gave him the authority to drive through the village. Bike dressed up in tinsel and lights, Steve in Santa suit. He left our home and I posted on Facebook he left. He drove through the village.
Steve was met with smiling faces and waving hands. I checked on Facebook; there were comments – where is “Santa Steve ?” “I’ve text you….” soon photos and videos were put up. And then comments of thanks.
The community spirit in the village brightened my day and lifted my heart. Thank you to all the children and adults who came out to see Santa Steve. I hope you all enjoyed Santa Steve on “Fattie Scot” : the Fatboy Harley-Davidson® dressed up in tinsel. I know he had a great time driving around the village and waving at you guys.
Merry Christmas and wishing all the best for 2021.
We had many many comments including:
Thank you so much, Lots of excited wee ones thrilled to see Santa
Even us ‘big yins’ enjoy seeing Biker Santa around the village! well done and thank you! Merry Christmas
Fabulous idea, great fun, thanks for bringing some joy round the village
Thank you so much for doing that, absolutely magical. My little one won’t stop talking about you! Really cheered us up on this bad news day
Very happy kids (and me) even though the tiny tot was a bit unsure
Thank you for visiting Huntlaw Road! My daughter was very excited to see you
Thanks to u for visiting Limekilns
Thanks very much for doing that…… highlight of our kids day (mine too if I’m honest)
You looked and sounded the biz! Thanks for making the effort Steve
My kids were delighted!!!!!!!! thank you so much
I think we were your first at The Boggs, Thanks so much the kids absolutely loved it
Thank you very much, we saw you from a far and there was mass excitement at our house!
Thank you it was brilliant, such a lovely thing to do
Thanks from Pringles Place. My kids loved it
Thank you for coming by the Green! My 5 year old daughter was DELIGHTED to see you!! Merry Christmas Santa Steve
Well done Santa! A much needed bit of cheer!
Thank you the kids were delighted, at this time anything that brings a smile to a kid’s face is well worth it
Such a lovely kind thing to do for the kids! Thanks so much Steve. Merry Christmas to you
Thank you my wee granddaughter Mia was chuffed to get fist bump at Queens Drive
Saw you from the window at old farm court & really appreciated it! You’re a star and sure all the little ones loved it. Merry Christmas
As the days are getting shorter, temperature is dropping and the amount of ideal biking days for someone like me are few and far between. I find myself having more time to sit by our beautiful open fire and being grateful that I can reflect on events over the last few months. And hopefully look forward to what the world has in store for us all as the shortest day of the year will soon be here and then the days get longer, we have a vaccine thats getting rolled out for Covid. Since April I have only been out of the house for essential visits, such as the hospital. In total, I have been out of the house a total of 9 times since April. When the restrictions were relaxed I went out with with hubby and some friends from The Dunedin Chapter, under strict social distance for a Harley-Davidson® bike ride. At the beginning of September I took the position of Editor with The Dunedin Chapter, I so enjoy writing about the motorcycles, events, editing members articles, etc. Despite the fact I love being on the Harley-Davidson® I have got to admit I have benefited from having quiet time, time for me and certainly endured More writing and less riding.
The last few months have been fairly stressful health wise. Lavita – my gastrostomy tube has been playing up. I was in utter agony with my last change. The lump on my shoulder is giving me some grief and the pain in my humerus at times is unbearable. I remember 24 years ago I was at nuclear medicine with my Dad, he wasn’t feeling well at all, and he the pain he had was eleven out of ten. The consultant said to him I can clearly see you are in a lot of pain, however you are not complaining. My Dad said to him, I just close my eyes and take myself on a journey, close out the world and try and dream it all away. It doesn’t take it all away but it helps, my Dad told him. I took this with me that day. On the days I feel I can no longer cope, I think of my Dad and his journey.
While I am on my mind journey I can relax, take time to myself. I can think about what may be in the spring. Hoping to get out on our Harley. Have the boards put on the back for my little feet for comfort for those longer rides. Get the Nikon out and take some photos of our beautiful country. As usual the medics have been looking after me; appointments that cannot be met in person have been on the telephone or video call. So I am fairly confident as and when the weather breaks and getting out and about restriction levels allow us to travel around safely I will be able to ride pillion with my hubby.
The one benefit of being at home is I have been able to write a lot more. I find pleasure in writing for myself and other companies and organisations. Working as Editor for The Dunedin Chapter Scotland HOG® #9083 I have just completed my first quarterly Newsletter. I have been humbled at the amount of caring messages from members. Lovely emails and texts saying what a great Newsletter, so kind. Working on Newsletter was hard work, working to deadlines, fitting around others, editing folks work; taking out some parts that I know they would really want in but know that I was tight for space – all in a days work for the Editor. Yes there was lots to do, it took many hours, a lot of the time it was at an hour I haven’t been used to tapping my fingers on the keyboard on my beloved Apple. However when its a subject you are passionate about, the folks sending in articles are lovely and most importantly the team you are working alongside are supportive. It makes me feel proud to be party of a warm and friendly happy Harley Family.
As we approach the latter months of the year I have become more and more grateful for technology. In particular my Apple laptop, smartphone and iPad. Whether, it has been a FaceTime GP call, a hospital appointment or a chat with a family member, my iPhone has been invaluable. When the lump on my shoulder caused my home nurse concern, first a photo taken from my phone, emailed to my GP, then a FaceTime call so she could see it, then decided it did warrant a GP visit and examination. Fabulous camera on the phone, such great photos you get from it. I’m so Thankful for my smartphone
I have my smartphone linked to my MacBook and my iPad. When I take a photo or put an entry in the diary on the phone it goes into both the laptop and the iPad too. I love to take photographs. Photography is a great passion of mine. One of the most relaxing activities for me is to pull out my Nikon camera and shoot some images. However, if I am standing at the back of the house watching my beautiful 4 year old granddaughter and our labradors taking my phone out of my pocket at an opportune moment to capture a memory. This week is my octreotide treatment week, belt and braces, it’s in the diary in my phone; alarm set on on phone to go off 40 minutes before my nurse is due, so I can take it out of the fridge. It’s much easier to administer and more comfortable if it’s not too cold. Nothing worse than a freezing cold substance going into your hip area. I don’t have much fat or muscle on me as it is. My make up is pretty bony now and the thick needles are getting kinda sore as they go in. But what I have to remember is no pain no gain. If it wasn’t for these injections I probably wouldn’t be here today. They reduce the rate of bowel motions incredibly, I no longer look like a Ribena kid all day long and its pretty well proven they slow down the growth of net cancer. All in all bloody good job I would say. And most certainly worth the pain in the ass they give you.
Since the middle of March life has became very different. The arrival of Covid-19. Lockdown, restrictions to the way we live, finding a new normal. For the time being at least.
I use my phone and iPad to have chats with my family and friends. Not only your traditional blether but the most fabulous video calls. We laugh, sing, play games; a telephone call has never been so much fun. On my laptop and iPad I keep in touch with friends from my support group, TAECT we have general chats, quiz days, information talks. I also keep in touch with my motorcycle friends at The Dunedin Chapter. To take part in quizzes, talks, chats, etc we use Zoom
Technology has been my lifeline over the last seven months. I haven’t had many visitors. I have only visited my dad on two occasions since March. Going out of my front door doesn’t happen very often and seeing people in the flesh is something of a novelty at the moment. Ive taken to talking to anything that looks interested and stands still long enough to listen; for instance yesterday morning I was sitting on the sofa wrestling with my slippers, the table lamp to my left was my conversation buddy, mind you I got the right kind of answers, I guess he agreed with me, I got a silent reply I took this as an acknowledgement of approval.
My other method of keeping in touch with family and friends is social media platforms. Linkden Twitter, Facebook and Instagram are the ones I use. Fabulous for keeping in touch, sharing information, posting articles, photos, etc. I use the messenger to chat. I also use WhatsApp. A good way of communicating with chums. We share stories, snaps, etc. A great way of cheering each other up especially when the mood is low.
Whilst my technology is great for communication and keeping me in touch with the outside world whilst I am shielding. The laptop, iPad and phone also have been used in more than I thought they would be.
During these difficult times many banks have closed their doors. Leaving many of us to online bank more than we used to. Me, I have banked online for what feels like a lifetime. My health before covid forced me to make changes, so I guess I have found it fairly easy to adapt. I use my laptop, iPad and smartphone to bank. However, I have to admit the app on the smartphone for the Natwest Bank https://personal.natwest.com/personal.html is so easy and convenient to use.
I use my Phone to order shopping, order my prescriptions from the GP, order the feed needed for the month from Nutricia to keep me going with through the gastrostomy tube.
Checking emails and going online is so easy with my smartphone. One click and Im there. Its so easy to download apps. https://www.apple.com/uk/ios/app-store/ There are so many different apps, something for everyone, from games to weather. Have a look, and give something new a try. It really does brighten your day.
When I first got a mobile telephone it was for work, it was to answer calls and check up on how MY patients were doing. That feels like another lifetime ago. Now I use my smartphone as a tool, to go on the internet, check my emails, send messages, take photographs, occasionally let my granddaughter play a game, oh and of course make a telephone call.
Since March we have had lockdown, restrictions, a new way of life. And I do believe we need to get used to it. This coronavirus isn’t going anywhere anytime soon. Some of my normal life still happens; my nurses come in and look after me. I get my awful needles injected into me for my treatment. I still enjoy writing very much, , making up stories and doing charcoal drawings, taking photographs, snuggling into my beautiful labradors. Trying my best to live life with a half full glass. I do miss getting out on the harley with Steve, going to see our friends at the Dunedin Chapter http://www.dunedinhog.com, and I miss my meetings at The Ann Edgar Charitable Trust http://www.taect.scot. Ive been inspired by walkers, and triers in life, so when Jean ann from The Dunedin Chapter set up a virtual walk for charity I decided to take part. This little piggy is donating money and taking part in the NC500 Virtual walk.
The idea is members of our chapter can register to take part in the event, we walk on our own, walk as little or as much as we want and are able. Basically it is a virtual north coast 500. We take note of our mileage, pay £1 for each mile walked. Someone like my sister, Hazel who has registered is very fit, walks many miles per week, she will clock in the miles. I’m proud of my sister she will do well. As my hubby Steve, he walks many miles in a day, he thinks nothing of walking 8 miles. Me, I love walking, its just a struggle. Imagine carrying a rucksack on your back filled with sand, you are walking up a steady incline and it gradually gets steeper and you begin to feel the strain. This is many a day for me. You can feel your heart beating and the thumping in your ears is getting louder. The beads of sweat appear on your forehead and you know its time to take a breather. Its all about pacing oneself and knowing my limits.
I have my sidekick most of the time. Buddy the fox red Labrador. He knows when the nets/carcinoid syndrome are playing up. He is clever enough to work out when the blood sugar is dropping below 3, or when my heart rate is beating too fast or going so slow it needs some intervention. He is my knight in shining armour. Buddy and our other Labrador Bella will be walking with me.
Dunedin Chapter do a lot for charity, as members we raise a lot of money for charity throughout the year. This walk will raise money and it will go in the charity pot. Me personally, as well as doing the walk, I will put £1 in every day until the end of the event. I intend to walk 1 mile every day. There are 50 days left, which means I will put £50 in. My reasoning we have been given the privilege of one year free membership to Dunedin, so this is my contribution, giving £50 to the charity pot.
I got a delightful message from a Dunedin member and friend Scott Anderson. Scott and his wife Shirley, both members, both ride Harleys. The message asked how I am and noted that I am doing the virtual walk and they would like to sponsor me. They said the reason they chose me is because they have absolute respect for me doing it and they know that it will be a huge effort for me.
When I read this I could have cried. We have only known Scott and Shirley this riding season, but already they have become firm friends. You know when you get that feeling about folk.
Sometimes we choose to sit on our bums and complain, do nothing with our lives. I prefer, the hard life, the trying. That thought when I’m out doing something and I need to stop for a rest and I think why the hell am I putting myself through this, oh yes that great feeling of reward and friendship.
Life is a journey; mine is wonderful folks; be all you can be xx
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.
Lavita has been my lifesaver. For those who don’t know Lavita is the name of my gastrostomy feeding tube. Artificial feeding is a way of life for me; feeding tubes, syringes, dressings, huge deliveries of feed by my lovely drivers from Nutricia, etc. For the last few months I have been having a bother with my tube, my nurses have been coming in, giving the usual service, changing water in balloon, etc. However, I have had a lot of leakage (losing water from my balloon ) I have been in an awful lot of pain and three times the balloon has burst. Lavita has been a leaking gastrostomy tube.
Last week I went for a ct scan with contrast at the request of my net consultant. He is worried because my 5hiaa is elevated, I’ve lost weight, been getting a fair few infections and I haven’t been feeling well at all.
This week I have been at the hospital to see one of my consultants. He was able to speak to me about my ct scan and finally shed light on why I have been loosing water every week. And perhaps why I have been in so much pain. He asked me to get onto the couch, he Kindly helped me up, he assisted me off with my shoes, I couldn’t bend down comfortably from the couch and get my shoes off, he could see that so bent down and took my shoes off for me.
I lay flat on the couch and he said Mark requested the CT scan for a totally different reason the problem we are going to discuss and he started to explain what the radiologist reported on the CT scan. The report stated the balloon should be sitting in my stomach, however it is sitting in my jejunum. The doctor decided he would reposition it there and then. Are you ok? he said, I nodded, my tummy was aching. Just breathe in he said to me, and I will get this adjusted and make you more comfortable. He gave a very firm tug on the tube and turned it around, he pushed it into place and gently twisted it round. He pulled the disc tight up to my skin and said the tube needed to be at 4cm. And to check and adjust it several times per day. He is hoping now that he has pulled the balloon back up into my stomach that I won’t leak water any where as much as I have been. Some weeks, my nurse puts 20mls of water in when it comes to the water change there is only 7mls of water in the balloon.
I got myself decent, he helped me off the couch and onto the chair beside his desk. We now had time to discus what he did, how my gastrostomy tube looked on the scan and how I was feeling. How am I feeling? rubbish, hope to feel better soon….. My doctor did me a drawing of how the tube should be and how mine was when I got the scan. He told me I should get blood tests today; the nurses with a bit of a fight took my blood.
Today I got an email from my other consultant; my endocrinologist; a fantastic net specialist. The one that ordered the CT Scan. He said he was shocked when he read the report that my balloon of my gastrostomy tube was in my jejunum. He asked how I was feeling and said he was relieved that I had seen my other consultant Alan and that he had repositioned it. The prof said he is hoping that the leakage will slow down now that I have had my tube pulled up. The prof is amazing, he is caring and always makes sure I am pleased with the service I am getting. He helped set up the Charity/support group, http://www.taect.scot that I now rely on and admire immensely. Gives up his Sunday for Net Cancer Day for an information lecture. All the patients and staff talk very highly of him.
I feel privileged to have very caring consultants that look after me so well. Especially take time to email me out of hours, or give me a call and ask how I am. Thats what I call service.