Over the last year I have been missing out in meeting up with chums and support network at net cancer support meetings organised by TAECT We have however had zoom meetings. Had a chance to chat and share a story or two over the internet. Our last meeting we had a guest specialist. The zoom meeting was different this time it was a question and answer session with dietician/nutritionist, Tara Whyand specialising in net cancer and carcinoid syndrome. On a Wednesday evening we were talking about nutrition
The zoom meeting was very well attended with a great variety of questions. It was informative and interesting. Living with a peg feed you may wonder why I want to take part in the discussion. Primarily because I miss my chums and want to see familiar faces. I physically miss seeing the friends I’ve made through the group, including Barbara, Margaret, the two Alistairs, Muriel & Eric, David & Isobel. It feels like a lifetime ago that we were all together in Pencaitland bowling club at the Tea Party I pulled together and the music night. Not only raising money for Scotland’s Net Cancer Charity but promoting awareness of the cancer and making new friends. Pre Covid we would meet up physically these meetings would be called Net Natter Meetings. Things have to change slightly for now and technology is fabulous letting us all join in and natter together.
It may seem strange that someone like myself with a gastrostomy tube attends a nutrition chat. However, I found it great. Tara mentioned one of the most bothersome symptom; diarrhea. We discussed this. Spoke about flushing. Also pellagra. We discussed taking supplements such as creon and vitamin B. All in all it was very informative and helpful. I’m sure everyone got a lot out of it.
As the covid vaccine has been rolled out and the restrictions are getting lifted I hope we will be meeting up soon and we can start to have regular Net Natter Meetings again.
I’m pretty sure that most of us have been affected by cancer at some time in our lives, either by living with the disease, helping someone through it, or maybe its an acquaintance, but affected you more than you thought it would. Whatever your involvement with the word cancer and the illness, it impacts the lives not only of the person that physically has the diagnosis but those around them. As someone that has had the word cancer in their life for quite some time, the diagnosis in many people, although it has taken the life of such wonderful people today is a day for positivity today is World Cancer Day 2021
When many of us sit in a consultation room and gets a cancer diagnosis it can be like hitting a brick wall and your world can go in a turmoil, everything can become a blur and life may never be the same again. Some cancer journeys are fairly short and others are a long hard slog, whilst there are unfortunately some that are managed with palliative care. Wherever the road takes you its always a memorable one and easier if you have someone to share it with.
Family and friends are fabulous they listen, help you, take you to appointments, etc. And are a great shoulder to cry on. However, we have to remember they are affected to and need escapism. Sometimes its good to talk to a complete stranger. Or at least what starts of as a stranger. When you are going through a cancer journey please reach out and talk. Talk about your feelings, don’t leave them in the box and feel strangled and down. Charities such as Maggies Cancer Care, Marie Curie offer volunteer facilities where someone will chat to you, other places do this service too, ask your oncologist, consultant, doctor, GP or nurse for advice. Even if you are too unwell to go and meet up, or as we are at present in these restrictions due to covid; arrangements can be made to chat on the phone. Believe me it really helps. It certainly doesn’t have to be on the nature of how are you feeling?, but can be if you want it to be. Conversation can be light hearted. Just because you have a serious illness doesn’t mean you need to have a serious conversation; you are still allowed to laugh. Its lovely to build up a relationship with someone and have trust in them that you can talk and say things and that it will go no further. Not feel guilty for what you say. Feel good for laughing. Share stories.
Whatever the cancer journey its usually an emotional one as well as a physical one. Most certainly one we couldn’t do without the help of the wonderful oncologists, consultants, doctors, scientists, nurses, volunteers, researchers, drug companies, charities, etc. For their amazing hard work and dedication I would like to thank them. What certainly keeps me going is positivity and keeping that frown upside down by making sure I smile each and every day.
Well one month into 2021 already. Its just turned February. For some its a dark month and many folks find it a lonely difficult time, with thoughts and reflections going through our minds. This year we are still in restrictions, a great deal of people have jumped from one personal crisis to another. There has been so many difficult situations for our fellow human bean to cope with over the last year; we have been tested in more ways than one. I have known a fair number of family and friends who have over the last year fought life threatening coronavirus. During this pandemic many people have faced fear, anxiety, poverty, hardship, social isolation, unemployment, etc. Now is the time to take notice of who has been helping who, and most importantly does anyone need help. Remember when we used to pop in for a quick chat, or go out for that drink, meet up at lunch time, or a run on the bikes. That person is possibly lonely a missing seeing everyone and could do with a jolly good chat. Do yourself a favour and as the scout or girl guide leader would say do your good deed for the day; Pick up the phone – its good to talk
I think we can all agree that this has been an unusual year. It has been a difficult time for everyone at some time and we have all be faced some sort of challenge and uncertainty. I don’t think anyone thought we would still be facing these kind of restrictions in 2021. Covid-19 has dominated our lives and health. The NHS and the care staff have taken good care of us since the start. They are dedicated and like true troopers put patients before themselves, work long hours; doing their best to make us feel as comfortable and secure in these strange and difficult circumstances.
From my personal experience my team of medics all the way through this pandemic have been ultimate superstars. My net specialist emails in between appointments to check up on me, make sure how I am doing. My nurses come in to my home changing my dressings, changing the water in my gastrostomy tube weekly, administer my octreotide treatment at home fortnightly, change my entire gastrostomy tube every 8 weeks (however due to problems such as infections, burst balloons, etc its been happening after 5 weeks, 1 week, 3 weeks). My nurses will also come to my home if I have any problems. They are wonderful; my net specialist telephoned me last week when he was on the phone he commended the nurses and said the work they did and how well they looked after me, helping keep the amount of infections down and most certainly assisted in keeping me out of the hospital. The amazing supportive Community Enteral Nutrition Team (CENT) call me regularly. Usually Kat or Marion visit me every two months. They weigh me, check on my peg feed and we discuss how my feeding regime is going. We talk about my quality of life, what is going on with my appointments, my body and everything thats going on in my life. They are very supportive and always at the end of a phone. I can pick up the phone and give them a call any day, if they can’t pick it up and talk to me when I call. Their secretary June will answer, take a message and one of them will call me back, chat with me and sort out any problem that may be going on. They report to my dedicated Net specialist (The Prof), my hard working GI consultant, who works hand in hand with the Prof, and my GP. Letting them know if anything needs changed, such as my frequency of feed, etc. Remember my GI consultant, he is the chap who did the creative drawing when he kindly saw me bang in the middle of covid restrictions and did a wee procedure when my gastrostomy tube fell further into my intestines than it should have. He has to have sense he has labradors.
For some people this will have been a long and lonely year. For others it will have gone quickly and nothing much will have changed other than the physical restrictions, such as supermarkets, going from one district to another, closure of shops, establishments, etc. This time last year I was looking forward to going to Dunedin Chapter’s AGM meeting and annual dance; this is the Harley-Davidson® club that my husband and I belong to. The AGM was actually the last meeting we all got together for an official meeting. Now that the vaccine is getting rolled out, you never know…………. I miss the blether, the friendships, get togethers. However, right now its for our own good, and we have to wait until the appropriate time. A while longer to make sure we are safe is better in the long run. So in the meantime be content with sharing a conversation on social media or a text, email and most definitely a natter on the phone. When director of Dunedin Chapter Scotland HOG® #9083, Stewart Willox phones me and says I won’t keep you Elizabeth, and we are still blethering 20 minutes later. I’m sure the poor chap’s ears are bleeding.
I have been very fortunate over the last year and would like to says thanks to the folks that have kept me going, I wrote an earlier post on being thankful for my smartphone and posts being grateful of support during this pandemic. However, I would like to echo this and let everyone know I more than appreciate the texts (yes minister friend Janice, even the early morning Prayers), WhatsApp’s, emails, social media messages; every piece of contact helps prevent the feeling of loneliness, it makes me appreciate what I have – a circle of human beings around me that care. I so love the photos I receive in texts of my grandchildren, it brightens my life and lightens my heart. Marion and Tony send me the most beautiful photos of Luna, she was born in lockdown, we were privileged to see her Christmas Day and have only seen her via technology since, thank goodness for gadgets. We have round robin texts between Tony, Stuart, Marion, Laura and Myself; all checking in, keeping up with the news and sharing photographs. Pre lockdown both my sons were at our house regularly and our home filled with laughter and cheer. Now our lads call regularly, they FaceTime with the kids which is fabulous, I get time to talk to the boys and chat away with the babes. Nearly 5 year old granddaughter Alexandra loves chatting away at anytime. See how they are developing, here all their news. Never tire of hearing their news, listening to Tony telling of his uni work, and whats going on in the world of government policy at Edinburgh University , or chatting with Stuart as he drives home from a hard shift at the hospital where we talk about all sorts. My sister Hazel and I text message each other every day just to check in. We blether on the phone often, and its never a short phone call. My friend, Jen, we met on the first day at university in Edinburgh when we were both 18. We’ve been firm friends since. We chat every Friday morning at length. I so enjoy these calls and have to admit they help keep me sane.
The last year for me has been difficult I won’t deny it. I have been over the threshold approximately half a dozen times and most of those occasions have been sheer necessity. I so miss being able to ask Steve to drive me over to visit my Dad. I miss going to my support meetings with The Ann Edgar Trust; so miss seeing the friends I’ve made and the support I get out of going. So for now I’m still content with my calls and other means of communications. My daily WhatsApp messages from Louise lets me know I have a loving caring friend, Stephen cracks me up with his comical wit on WhatsApp, he sends me not only messages to ask how we are doing but jokes, photos to make me laugh; he arranges online quizzes that we take part in on zoom. Lindsay Lou messages me with photos of the kids and tales, I so miss seeing them, suddenly Glasgow feels like the other side of the world.
I’m sure you have been affected this passed year in some way. Whether its physically or mentally, we have all been touched one way or another. Family and friends are important, keeping that line of contact is much more beneficial to some than others. What I have taken from this year is, yes it has been trying, but we have to remember restrictions are put in place for our own good and to save lives. During this pandemic a great deal of people have been diagnosed with this awful virus and sadly numerous folks around the world have died from it. Receiving messages, seeing familiar faces on my silver screen, receiving cards from my sister regularly by post, chatting on the phone, sharing news or a problem or five. I realise how lucky I am to know I am loved and cared for. Next time you pick up your phone to look up your social media pages or online shop, why don’t you give your family or friend a text or better still a phone call. It is so lovely to hear a friendly voice, share a chat; find out whats been going on in YOUR family/friend’s life. If you are going to do something nice today and think of others; do a good turn, please don’t say you don’t have time, life is good and far too short. Share something nice that happened today with someone. Please Pick up the phone – Its good to talk
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
Four years ago my house felt somewhat invaded with nursing staff in dark blue uniforms. Very competently carrying out essential duties. Strangers in my home fuelling me with anguish and fear. They came in every other day, assisted with my NG tube and did anything else I required. It took a while before I realised I really did benefit from my essential district nurse.
Four months in, and things were going amazing. I began to realise how much I need them. How valuable they are, not only in the physical nursing department, they are here emotionally and for my family too. The team look after me very well, if I have any sign of “going down hill” they are on the phone to dr or hospital in a flash. As was planned with my treatment plan, I went into hospital had surgery and had a gastrostomy tube fitted.
Five days later I had sepsis, spent 12 weeks in hospital. When I got home, everything was very difficult, and my goodness I was so grateful for the team of district nurses. Evelyn was the one that came the most. My skin on my tummy was red raw, I could hardly walk; to be honest everything felt like a mission. The once strangers dressed in blue had become my saviour. Nothing and I mean nothing was too much trouble. A rutland trolley was brought in to help me walk, my bed was fitted for a mattress elevator, and so much more. My tummy was awful, it bled, the skin kept falling off the dressings were soaked. No sooner were they on and they were drenched. I could see a determination in Evelyn’s eye, we are going to sort this out, she said to me. I so wanted to believe her. I was covered in dressings and looked like I had been shot. Every time the acids leaked out of the hole in my tummy and ran over the lacerations on my skin the pain was so intense. When she came in I was bent over almost falling to my knees trying to get back on to the sofa.
My nurse that became a dog with a bone didn’t stop until she got things ‘right’ for me. The correct barrier, a change in creams, additional creams and a new different dressing. All this every time they are in and what a difference.
For most folks that read my posts they will know I have two labradors, Buddy and Bella. Buddy is my special boy and Bella his wife. They love the nurses visits. As soon as the orange folder was laid out, on best behaviour both labs patiently waited for a nurse to arrive. They will sit perfectly while I get treated by the nurses. Once everything has been completed my baby labradors sit politely and get a dog treat. How happy they are. Tails wagging frantically.
December 2nd 2020 was a sad day in our household. Our ‘dog with a bone’ nurse retired. Evelyn has made a huge impression on us. She has more than helped me and always a willing ear, getting through my sepsis was one of the hardest things I have had to conquer in my life she helped me all the way. When I was in hospital with sepsis, Evelyn phoned the ward 3 times per week for the 12 weeks I was in to check up on my progress. From my husband to my granddaughter, she gave them the time of day, listened and spoke to them. Very often it was just at a time when they needed it most. This lovely nurse is now moving on to a time in her life when she should take some time selflessly for herself. Fingers crossed COVID restrictions will get better and she can get out and do all those wonderful things I wish for her in retirement. As a family unit we will miss nurse Evelyn. She went beyond her call of duty. She had a terrific memory, on sick days she would pick up the phone and ask a GP to come see me, rattle off my date of birth without looking at my folder. One day I smiled at her and asked if she knew my national insurance number; she grinned back and said now that would be telling. She bonded well with my family, was interested in neuroendocrine tumours and carcinoid syndrome. She supported greatly the wonderful support charity I have come to rely on The Ann Edgar Charitable Trust Evelyn participated in our tea party, enjoyed our fundraising music event for net cancer day. She made hundreds of Pom Pom balls to create ziggy zebra. She also was so generous when our youngest went into nursing got him a pile of books.
I know I am in good hands with the team she lead, the strangers in blue who have now became familiar ‘welcome visitors’ attending to my needs. Taking care of me and my gastrostomy, Lavita, administering my injections, doing my dressings, etc.
These hardworking nurses; predominantly now seen by Nicola and Maria make a big difference to my life. They brighten up my day, make me feel safe and secure. I trust them. If you are thinking of going into nursing or are in healthcare or nursing and thinking of working in the community, in particular going into district nursing. I can tell you how valuable and needed you would be. Walking into someone’s house for the first time isn’t always easy, just like when I had the insecurities of the first visits. A couple of visits in and it all gets so much easier. We are all scared of the unknown. That once stranger who enters my home helps alleviate any fear, and deals with more than you know.
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
Several months in since Covid first hit us. Our way of life has changed and we have began to look for a new normal. Living life at a different pace. Shopping, working, educating; finding a way that works for us to go about our business safely and hopefully happy. Social distancing – meeting with others safely. Trying our best to get that balance of seeing others, getting out in the outdoors but making sure that we are safe at the same time. We live in the country in our delightful detached cottage, no neighbours, not a street light on our little single track road, not even a cats eye. However, what we have noticed is an increase in people walking passed the house. Obviously they must be taking their daily exercise and what a lovely place to do it. There has been a lot of awful news since covid hit the headlines. Since the middle of March and the big lockdown happened, I feel there has been a lot of heartache and we have had many sad and tragic events to deal with. Couple of weeks into September and I got a message which made me smile from ear to ear, it was to let Auntie Lizzie know that 10 year old Louis Bagged his first munro.
I was beaming, a very proud great auntie. Louis had climbed Ben Chonzie with his Dad Stephen. Lindsay, my niece, and Stephen are fabulous parents. Okay I am biased, but they are. The three children all have handled the situation with coronavirus very well, they very much missed school and the youngest one Patrick started primary one and eldest Sophie started high school. Big year. For some time they could not attend church and that was another blow to the family. Louis is my son, Tony’s God son. All three children normally attend some sort of activities. Louis in particular loves to go to the football and support Celtic with his Grandad and Dad, he enjoys boxing and training at the local club. All this has been taken away. Lindsay and Stephen have not been down trodden. I have been sent the funniest videos. They have set up assault courses in their garden. The children ran round the course and one of the parents would set the stop watch. Their dog Lubo would join in. Fantastic family fun, while gaining exercise, stopping the boredom and learning a few things at the same time – pulse rate, etc. The children soon got the exercise bug and they began family walks, cycles and adventures. Until one day Stephen asked Louis if he would like to train to climb a munro. He explained what a munro was. He told him that a munro is a mountain that is over 3000 foot tall and that there are 282 across Scotland. They decided to attempt to climb Ben Chonzie together. Which they did. They took the dog, had an amazing day. I am so proud of Louis, to climb a munro is difficult, it takes stamina, this young chap was 10 years of age when he bagged his first munro.
And so the munro bagging continued. My son Stuart and fiancé Laura climbed Ben Chonzie. They had a wonderful time, it was unusual for them to be without the children and only have Hudson, the fox red Labrador with them. You can normally see them out cycling the bikes with the children in tow. Or all of them walking in the forrest all set for an adventure. How I love to get FaceTime calls telling me of the adventures they have had cycling along the forrest track or taking the dog a walk. So young and full of energy. I’m sure when 4 year old Alexandra’s legs are up to it she will be mad keen to get up a Scottish mountain. Get the camera out and take the most superb photographs of our beautiful country and amazing scenery.
A wee bit about Ben Chonzie. Gaelic name Beinn a’ Choinnich – meaning mossy mountain. Situated near Crieff in Perthshire. The great Scottish solitary mountain reaches a height of 3054 feet and rises between Strathearn and Loch Tay. Its a super first climb with a fairly straight forward heather clad route of 9 miles, which tends not to be steep but with rather more moderate inclines and leads to beautiful open country, which is ideal for this current situation when we are needing to social distance. Plenty of space for everyone, even the dogs.
All this talking of climbing has taken me back to pre neuroendocrine cancer days. Life before carcinoid syndrome and days with super duper energy when running up a mountain was Childs play. In the year of 2000 my husband Steve, my brother in law Alan, my sister Hazel (Louis’s gran) and quite a few of our friends were led up Ben Lawers by our friend Gordon Macleod. We raised quite a few quid for cancer charity that weekend. Great fun was had by all. It was the first May bank holiday weekend, I can remember sliding on the snow, what great fun we had. Lovely evening at the Kilin Hotel that night too, the Irish whisky after dinner I can recommend. https://www.killinhotel.com
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.