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 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.
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.
After a day of swithering whether I should accompany my hubby and some of our good friends from https:www.dunedinhog.com on a mates run. I hadn’t had the best of days, had to phone my medic team and get one of them to come in on an emergency. After only two weeks my gastrostomy tube had to get changed. Believe me it wasn’t a pleasant experience. I rested all afternoon then decided the company of good pals and some fresh air would do me the world of good. So at 5pm on the Friday evening I got myself into my bike gear all ready for a Harley Davidson run in The Scottish Borders.
My hubby Steve spoke to our chum Scott and put it to him “show us your ride” Steve and Scott messaged each other back and forth. Scott and his wife Shirley lead a scenic route. We met up with them in Galashiels. The drive from our place in Boggs Holdings, Pencaitland to Galashiels was a reminiscent one. We took the A6093 to the junction of the A68 and turned left, took the first right and headed towards Gorebridge, passed the entrance of Vogrie Country Park, my mind took me back to many walks I went on with my hubby, children and dogs, such happy times we had, I now hear lovely stories from my grandchildren when they have visited and played at the park and walked the dog. We made our way along the narrow twisty road towards Borthwick, passed Borthwick Castle, where Mary Queen of Scots sought sanctuary in June 1567 when she learned Scottish nobles planned to capture her. You can find out more about Borthwick Castle at https://www.borthwickcastle.com I was happy to drive pass our sons old primary school, Borthwick Primary which is now a private residence. We drove up the twisty steep incline to North Middleton.
From North Middleton we took the A7 and headed south. Our destination was to meet up with our group in Galashiels. The drive down was wonderful. We enjoyed a somewhat familiar drive, one we did regularly several years ago, what seems like in another lifetime. The scenery was beautiful, typical of Scottish countryside, as I looked ahead clouds rolling in the blue sky, many shades of green on the hillside; home to the happy skipping sheep, bleeting as we drove passed them. The river looked inviting as we drove by, I could have asked Steve to stop at the side of the road and took a paddle. As we drove down the A7 we rode through Falahill, Fountainhall, Torquhan, Stow, Torsconce, Buckholm and finally arriving at Galashiels.
For the hungry horace’s we met up in Macdonalds car park. For those who wanted could join an organised social distance queue for food or got to the loo. Whilst the others ate, went to the loo and blethered. I sat on the ground in the car park and caught my breath. I don’t mind admitting I was feeling a tad wobbly when I reached my milestone, Galashiels and I could have done with going home. The ride from ours to Gala was more than enough for my body on this particular day. However, my want and desire to finish the route, be out with our friends and enjoy the time on the fatboy outweighed how I was feeling. Despite feeling my heart beating so fast that I thought it was going to jump out of my shirt. And the worry that my blood sugar wouldn’t keep up all the way round despite having my gastrostomy tube running. My body ached. Feed checked, all sorted and feeling better. After the rest, I took photos of the others and their bikes. When we were ready we took the A7 and headed towards Hawick.
Scott took the lead with wife Shirley in her Harley Davidson behind him, both Borders folk made it ideal for them to choose the route. I was looking forward to this run. Will it live up to my expectations? I hope so…….
We drove 6 miles from Hawick, Scott took us to the picturesque village of Bonchester Bridge, lying on the Rule Water. Leaving the delightful village the route did not disappoint and the scenery just kept on giving as we headed over towards the A68 and rode to the border view point.
The Scotland England Border on the A68 is an excellent opportunity to stop, take a break and a wee photo. We all had a great time; even had time for The Vickie Green Challenge.
We stopped for a while at The Border View Point, giving us a good rest point as well as the opportunity to take photographs. Then had an enjoyable drive down to Jedburgh. Memories came flashing into my mind as we drove through. Passing the rugby ground, seeing the large posts, wonderful recollection of my son Stuart playing second row for Haddington. The sheer delight of Haddington under 16’s winning the cup. What a day that was. Such a great feeling standing at the sidelines cheering the team on, screaming at the top of your voice. Regardless of the weather, rain, hail or shine. Continuing our journey we made our way to St Boswells, turned right, opposite The Buccleuch Arms. Lead by Scott we climbed up a beautiful steep road with some unpredictable twists and turns. Drove a route with amazing trees, lush grass and beautiful plantation. We arrived at Scots View; one of the favourite views of not only Sir Walter Scott, but of my parents. Looking over the valley of the river tweed I could clearly see why. It is not only a beautiful view, it is calming and relaxing. I felt quite at one with myself soaking in the atmosphere. My parents took my sons Tony & Stuart and their cousins Lindsay & Robert here, as well as many other places. However, Scots View is particularly memorable not only for the view, but it was the day my son Tony fainted.
After spending time at Scots View we took the back road and headed to Lauder. Thereafter, our wonderful hosts, Scott and Shirley headed back to their home in Ancrum. The Edinburgh based folks headed towards auld reekie and Steve and I made our way to Pencaitland. We went straight down the A68 turned right signposted Haddington on the A6093, through Pencaitland till we reached our home in Boggs Holdings. Buddy and Bella were pleased to see us, as I was to see them. As much as I enjoyed the ride it was good to get my feet up. I had a beautiful evening with lovely people. It’s so nice to be tired for a reason. It’s good to meet up with others and see places I haven’t seen in a while, especially ones that provoke memories. Looking forward to the next run.
Well its been quite a while since we have had limitations due to coronavirus. For many of us life has became a new normal, there are folk that listen to radios and watch the news on the tv in the hope for lifted restrictions. In the passed weeks restrictions have been gradually relaxed to allow us to see one another, within certain restrictions. I’ve been at home with my dogs and what I have wanted most is A Walk With The Dogs.
We are blessed to live in the country. Surrounded by beautiftul country side and not see a person, shop, house, or car for miles or hours. You may think that after being cooped up in the house you are desperate to talk to someone, alas no. The beauty and tranquility of our surroundings brought the most fantastic memories flooding back. Such wonderful thoughts and recollection of amazing trips with the boys, paddling our feet in the water and building a dam. For this walk I had the perfect company; my beloved husband and faithful labradors. They were just what I wanted and needed on this midweek evening.
We took a drive to St Mary’s Loch and Megget Reservoir. One of our favour places to walk the dogs in the evening , not a person in sight. At St Marys Loch there is a lovely cafe, that is usually open during the day, serves not only a great cup of coffee and cakes, but does great lunches too; fills the belly of many a biker with delicious homemade macaroni, curry, lovely sandwiches.
St Mary’s Loch is a lovely spot to sit and have a rest after a walk or drive. The drive to the loch is pleasant whichever way you are coming from, either Edinburgh, or down south. The loch is the largest natural loch in the Scottish Borders, its 5km long and 1km wide. It lies on the south side of the A708 between Selkirk and Moffat and is only 45 miles from Edinburgh, well worth the drive. The loch was created by glacial action during the last ice age. Why is the loch called St Mary’s? There was once a church dedicated to St Mary which once stood on its northern shore. Unfortunately only the burial grounds are now visible.
St Mary’s loch is fed by Megget Reservoir. The Reservoir is in the valley in Ettrick Forest in the beautiful Scottish Borders. The 259 hectares reservoir is held back by the largest earth dam in Scotland. The reservoir collects water from the Tweedsmuir hills.
The drive to St Mary’s loch was a fun packed one. Steve and I were singing songs in the car like a couple of teenagers, the dogs were panting in time to the music. They look out of the window and you know they remember every last stop and treat they had the last time they were in the car. As we drove through Innerleithen they got excited in anticipation, thinking we would stop at the ice cream shop and treat ourselves to a cone. No such luck, shops closed. Buddy’s face fell like a sulking child getting the wrong toy, However, the elation when we opened the boot and they got out into the open space. They ran about 10 yards, both of them came right back to me, Buddy gave me one almighty slobbery kiss so hard on the lips he almost knocked me over. Their way of saying we love you guys. You could see the happiness on their faces. Buddy my ever so handsome Fox Red Labrador and Bella, Golden Labrador; she is sensitive. Both dogs are very loving.
On the road from the loch to the reservoir it is narrow and somewhat uneven. It is a fairly steep incline to get up to the reservoir. As you are driving you pass some beautiful scenic landscapes. The road can get a little hairy at times and you have to remember what goes up usually comes down. Lets just says we were going slow enough to take in the enjoyable scenery.
The dogs reluctantly jumped back in the car and we too grudgingly took our seats in the car and made our way on the scenic five and a half mile journey to Talla Reservoir, just one mile from Tweedsmuir in The Scottish Borders. Talla Reservoir is an earth-work dam fed by Talla water. And is supplemented by water from the Fruid Reservoir nearby. It was opened in 1905. To assist in bringing the materials for its construction, the Talla Railway was built.
Second exercise of the evening and the dogs were very happy, tails wagging franticly. Big labrador grins on their faces; all labrador owners will know exactly what I mean. And if they could talk they would be saying thanks ever so much for coming here, we know you love it, so do we. There was a bird chirping its head off and yes it though Bella was going to go chasing it and have it for dinner. Bella wouldn’t. She would be more inclined to go get it some food or give it a cuddle. She has such wonderful mothering instincts, but the bird didn’t know that and it was quacking its head off so we moved on and left it in peace.
We had a wonderful time, it was peaceful, the dogs really enjoyed. Scenery was beautiful. Weather was dry what more could you ask for.
Time to jump in the car yet again. One last pit stop to do. It has many childhood memories for me, lots for my children. Was the route my uncle Allan took me on when I was learning to drive. We did many charity cycles, predominantly The Borders Push for Testicular Cancer. We were now travelling the 22 miles Talla Reservoir to The Meldons. As we took the right hand turn, signpost “Eddleston via The Meldons” and started climbing the narrow unmarked road. Buddy couldn’t contain his excitement, tail wagging, and his quiet panting sounded like an anonymous heavy breathing caller on the telephone. “Nearly there sweetheart” I said to him. Bella licked his ears. At last we arrived.
The drive down to The Meldons was more than a pleasant one. Looking out of the car window as Steve drove and we chatted, there was so much going on. Sheep in fields, birds flying in the sky, so many different hedges, trees, etc. Various crops growing in fields, an array of different colours. We didn’t pass one car on the road. But then it was midweek and after 8pm by this time.
The dogs jumped out of the car as if they had never been out all day. Bella loved the water and paddling around, Buddy not so by this time in the evening he didn’t want to go in the water. Instead he was on a rabbit trail, nose to the ground and sniffing around and around very happily.
As I gently plonked my bottom on the heather and sat down to check how much feed I had left in my backpack, after all we had been out for quite a while. Great I still have at least over an hour on my pump feed to run. Sitting on the cushioned purple heather I looked around. Such happy memories came flooding from over the many years, lots of fun and many trips to this lovely location with family and friends. Sadly some people that are no longer with us but the reminiscence carries on and I will always have wonderful thoughts and memories. This is one of our happy places. For us a go to place.
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.
Wow its been a while since my fingers have tapped out a post. To say I haven’t jotted down anything would not be true. However, everything I have written recently has been very personal and Im not quite ready to share these thoughts.
It’s the beginning of July the last post was published in March. Quite a lot has gone on in my life in the last 4 months. The puppies have all grown, and gone to new homes. They have left a footprint on my heart – they were jolly hard work but oh so lovely to have. We kept one from the litter. A stunning young lady. We named her Bess. And yes she is turning out to be just we hoped; a great combination of mum, Bella and dad, buddy. Bess is already taking note to sit and wait when nurse Evelyn is attending to me. She is intrigued in all the help that a grown up Labrador parent can be.
We had the honour of attending and celebrating Sophie’s first Holy Communion in May. What a wonderful day that was. Alexandra and Grace were ever so happy to get into their dresses and drive through to Glasgow. What a day to remember. So happy, full of laughter and love. Quite a memory.
Sophie trying to beat Stuart’s time completing the rubix cube.
Sophie with Alexandra and Grace at her Holy Communion Celebration.
I felt far from my best in the last few months. Seen my consultant, dietician, several hospital visits. My wonderful nurses come to the house and cater to my needs. I’ve lost weight which is a bit of a bummer. My gastrostomy tube snapped which was slightly annoying- lovely staff from the hospital came out straight away with a new part. Now that’s what I call service. There has been a fault with the batch – there has been a run on broken tubes 😂
On the 10th of each month I get the chance to meet up with net cancer patients. Through the charity The Ann Edgar Charitable Trust. We have a great time blethering away, sharing stories. 10th June my sister hazel drove me to haddington to meet up with the others for a coffee on a Saturday afternoon. July 10th Steve and I went in style on steves BMW motorcycle to the evening meeting. The meetings help me a great deal. They give an opportunity to talk, share experience and most important be YOU. Looking forward to the next one.
As usual the run up to my injection was met with even more trips to the bathroom. Bowels working in overdrive. The day my nurse suggested I get incontinence pads delivered, I was a tad reserved, now I couldn’t do without them. Before I started getting the jab every three weeks I had total uncontrollable running to the loo, more than ten times per day every day. Now its greatly reduced. On a really good day, its three times a day, the week before my injection is due I’m met with a rapid increase of visits to the little room. This week as well as my usual company of my companion dog, Buddy. We had Bella getting up with us too. Bella is our 4 year old labrador retriever. Who is heavily pregnant. And lets just say the puppies were moving around in a way that she couldn’t hold the loo in for too long. Poor girl.
The night before my injection Bella starts getting even more restless, comes to me and gives me a big hug, goes into her large birthing box bed and starts digging the bed to make it comfortable. She is going to go into labour. Boy its going to be a long night. Bella starts to pant and shows all signs of first stage labour and then second stage.
At 0045am the first pup is born a little girl. She is a perfect fox red labrador retriever. Just like her daddy. Bella is so good, bites through the sack, cleans the little one up and welcomes her into the world. I give Bella a reassuring cuddle. And make sure the little and Bella are ok. They are. I take a photograph of them, I tell Steve first of course, and then send proud messages of the exciting first birth. My friend Louise lives three miles from me and asks if she can come and observe Bella giving birth and be of any assistance to me. She is there for the rest of the litter delivery.
By 0725am there are 8 puppies born into the world. Steve comes in to see Bella and is there for pup number 9 and 10. Bella feeds the puppies and a big rest. Despite being on cloud nine and so happy I’m shattered and feel like I can hardly put one foot in front of the other. I get myself washed and dressed my nurse will be here this morning to check over my gastrostomy tube, change my dressing, and give me my lanreotide injection.
10am my nurse Evelyn walks through the door. At first Bella barks, only until she realises who it is. Evelyn pops her head into the room to view the pups, and then walks along the hall. She scrubs up and then does all the needful for me. As my faithful labrador retriever, Buddy, sits by my side and watches everything my nurse does. I get ready for this painful deed to get done. Tummy first I think she says. The soiled dressing taken off, site all cleaned, helan cream and cavilon applied. And then my nice new clean dressing put on, carefully with tape not to touch my skin and cause a reaction. Evelyn then picks up my lanreotide injection. I get this every 21 days. Its your left side this time she says as I slip down my knickers. I then have to work out which way to lie so evelyn can inject my left buttock, I have enough problems with this at the best of times, put lack of sleep into the mixture and we have a recipe for disaster. I was this way and that way on the sofa. Evelyn said, just a minute and listen to me and then lie down likeI tell you, it worked a treat. As she administered the injection of lantreotide buddy sat a few feet away watching all, making sure all was good. Which it was. All done. Everything put in the sharps box. A good discussion between me and my nurse, as always. Notes written.
Steve calls my name along the hall. I take myself along inviting my super nurse with me. Bella is having a contraction, and as in previous seems to want me to work with her as a team. I rub her tummy and reassure her that I am by her side. Come on Bella, one big push for mummy, I say to her. I can see her body contracting, the pain in her eyes. My lovely dog looks so tired. I can see a little tail appearing and a foot, one last push Baby belle. And so she did. Out comes the most beautiful little puppy. Puppy number 11. Bella is exhausted, I hold it while Bella bites the chord, cleans him vigorously, suddenly a little squeal comes from the puppy. Bella wags her tail. He is perfect and she is happy. Puppy number 11 was born at 1118am. What a team, you both make. Evelyn says to me. I feel very proud. Bella gave birth to 8 boys and 3 girls. I’m so pleased that things have gone well. My dog is well, her puppies are healthy and of a good size. Buddy, the daddy, watches on eagerly, I know he is desperate to play with the little fella’s.
My nurse managed to see the puppy being born, she got more than she bargained for on her home visits for this Thursday. I certainly do not doubt that she has eventful days but I guess she doesn’t have puppies making an entrance into the world very often.
On November 10th 2015 I missed an excellent information day at The Botanic Gardens in Edinburgh. It was hosted by a small charity, many people will never have heard of – the Ann Edgar Charitable Trust. This event was for Net Cancer Day. The reason I wasn’t there; I was in hospital with sepsis. My mobile phone let out a familiar tone. I looked down at the screen, the notification said “a big cheer for Elizabeth……” this gave me the boost I needed and echoed what I already knew – that my chums from the support group were all there for me. It was then I decided by hook or by crook next net cancer day I would be doing something very different. Eight weeks in hospital, a few months of getting my life back on track. And then plans began……
The Ann Edgar support meetings offer what I would say is a pretty special service. I’ve made new friends and genuinely feel a real benefit. The charity has not only made me feel welcome but gives time and support to my husband Steve too. The knock on effect reaches not only partners, but also children, parents, siblings, friends and work colleagues. My sons, sister and friend have all been in contact with TAECT at some point. The idea that anyone affected by nets can get support or information on a local level is wonderful. For me it’s time to put something back in to say thank you. I would like to raise awareness of TAECT and net cancer too. What better time than net cancer day. So one year on and a tea party in Pencaitland is organised to raise some awareness and funds.
Whilst my main aim was to do the majority of the organising, I wanted to involve others. I enjoyed getting the help; it was great how it all came together. Helping hands can in all sorts of ways and was much appreciated.
It was a lovely event to organise, folks came from near and far to taste the lovely home baking I have been tweeting about. It gave me a warm feeling to see so many people walk through the doors. The room was full of laughter and chatter with many smiling faces. In the two hours we raised a fantastic £1289
Looking forward to the next fundraiser to get my teeth into.
Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube. After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage. It is apparent that the surrounding area is never going to totally heal. The health professionals have tried their best. I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings. My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore. After the trial and error of creams the best one and the one to stay is the cavilon lollipops. They act as a barrier, and its a wonderful life saver I can tell you. As for the dressings, well many have been tried and tested. At one point I looked like I had been shot. I was covered from my breasts to my waist. The nurse on the ward thought it best to keep it all sealed. This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast, dressings, and good old fashioned crepe bandage. The dressing that worked was the foam dressing. A hole was cut in the dressing and it was wrapped round my peg. The only trouble with this is the amount I leak out. The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.
My nurse, Evelyn, that comes in and changes my dressing at home noticed this. Evelyn is a dog with a bone. One day she came in with a booklet and a different dressing.
Do you fancy giving this a go? She asked me. Can only give it a try was my answer.
So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply it. This dressing is designed to absorb the leakage. And guess what – it does it so well 🙂 I have even noticed a reduction in the odour. The combination of the barrier and the new dressings, my skin is much improved. Its far from perfect and it will always leak. But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful. Cant see me shifting from the Keramax dressings in a hurry. And as for my nurse well she is a star.
Well it’s nearly 2am and I’m wide awake. It’s been a great day. Today was our 30th wedding anniversary and we are in Boat of Garten, near Aviemore to celebrate. I can hear two very familiar sounds. The first is the whiring of my feed pump, the other -rumbling snoring; my hubby, Steve, this gasping pup pup sound coming methodically from him. I wake up often at this time, giving me the opportunity to reflect on what’s going on in my life.
I’ve had two lovely nights in Aberdeen with Steve. We were staying in a lovely hotel, went to a great party to celebrate the 60th birthday of his cousin, Annette and the 30th birthday of her son Lee. Great seeing the family and spending time with Steve’s aunt Margaret and her children. Steve’s sister Julie, Nicole and jack are here too. Lovely quality family time; had a super family meal and went back to cousin Jimmy and Teresa’s for a visit. Steve and I had some time on own too, the drive through Aberdeen for me set of many childhood memories. My aunt lived in Aberdeen and we visited often. As we drove passed Duthie Park my heart leapt and I can remember it as if it was yesterday playing in the hot sun with my mum, granny Baird and auntie Nellie. I yearn so to take my grandkids there, share my happiest times with them. The time went so fast over the weekend. After breakfast we popped in to see auntie Margaret. She was telling us about manuka doctor honey. And how it helps health conditions for some people. She brought the jar through to show us, steve took a photo of it. We have since looked it up and we can purchase it at Holland & Barrett for £28.99 and get a second jar for 1penny. We are going to give it a try. For a lady of eighty years of age she is marvellous. When I was there I had my backpack feed on. She was open and asked me about it. I wish there were more people would ask when they really want to know. I really don’t mind answering the questions. You tend to find its children and people over the age of 75 that ask.
Our anniversary day was wonderful. Drive from Aberdeen to boat of Garten was delightful. We drove passed the lecht ski centre, one of my old haunts. For me so strange to see it covered in Heather rather than snow. A warm welcome awaited us at our beautiful hotel, we have a garden room, so somewhere to sit out with a pot of tea 😘. A huge six foot wide bed – could do with that at home. We literally dropped our bags and drove into Aviemore. We were booked on the strathspey steam railway for first class afternoon tea. What a great journey we had. Our own we private compartment, pot of tea, coffee, and lots of lovely food. I thought this would be a great treat for Steve, since he is always running about after me, working so hard with his business and rarely gets time just to sit and watch the world go by. And we both love the idea of the steam train. An hour an a half of relaxation was wonderful. I’m sure it did the two of us the world of good. We had parked the car about a five minute walk from the train. As we were walking back, I said to Steve I needed to go to the toilet. We immediately saw a tesco – bingo, that will do, I was bursting now, thank goodness I had an insurance policy on. Steve put his hand gently on my shoulder you are too close to the edge of the road he said as a large lorry rumbled passed feeling like it was about to take of my nose. At last the green man, we could cross. Yes, they had customer toilets. Thank,goodness. Oh the relief.
We came back to the hotel at 5pm for a rest before going downstairs for a wee while at dinner time. I sat on the decking with a pot of tea, it was was a lovely day and at 5.10pm it was 19 degrees – in Scotland, nearing the end of August that’s pretty good. Sitting watching the world go by, soaking in the atmosphere, beautiful. Suddenly a wave washed over me and I could feel a chill to my bones. The wee voice was saying watch you don’t get overtired now – you have done much more than you are used to. The tummy started rumbling, get to the loo woman and deal with it. I said to myself, it’s your blasted anniversary. So I did. A beauty of a major explosion in the bathroom – the sweat running down my back with the pain. Along with my teatime medication I took extra anti sickness pills. I lay on the bed for twenty minutes with Steve. Much better.
We had a wonderful evening downstairs. Gosh, not a late night for us though. We went down at 6.30pm and we were back in our room at 8.15pm. Before we came to our room we walked round a beautiful community garden opposite the hotel. Lovely way to finish off the evening. Back in our lovely room, we had time to relax and planning our Tuesday.
We have to make sure we get plenty time to do my creams, dressings, medications and my feed. Two 500mls on the pump overnight, one or two 500mls during the day depending and 4 bolus feeds during the day. Steve is very organised and methodical when it comes to my medication. He sorts it all out first thing in the morning, puts it in little pots and transfers if medicine containers if we are going out.
Looking forward to today. We are meeting my sister hazel and brother in law alan. Going up in fenicular railway.
Making My Home A Haven is important to me. Sharing homemaking skills. Recipes and food. Bible Studies. This is a treasure chest of goodies. So take a seat. Have a glass of tea and enjoy. You will learn all about who I am.