Our house is usually always full of chatter. We have the uncanny skill of speaking and listening at the same time. Grandchildren and labradors bring much needed laughter. They are my essential sunshine on a rainy day. Most definitely turn my frown upside down and oh yes help me smile each and every day. I can always say what great fun granddaughter’s can bring.
If you were to add the age up of the three of them you only reach the ripe old age of nearly 12. Firstly there is Alexandra. She is the eldest at just turned 6, Ellie comes second at 5 years of age and Luna will be 2 at the end of the month. The girls all play so well together, shrieking up and down our hall. Running around the garden. Playing with the garden toys or walking the labradors in the back field together with me, all of us singing and chatting away. The last time the girls were playing together they went to Vogrie Country Park and what fun they had.
Individually they all like to come play at ours too, get some grandparent time. Bake cakes, do some arts and crafts, play games, garden with Granny, clean the Harley-Davidson with Papa and they most certainly love getting in the Wetroom and having a long shower, playing water games, singing at the top of their voices. We all love to go walking with Buddy and Bella my Labrador retrievers. Our back field is ideal, a wonderful safe environment for both dogs and children. Or go to unleashed Dog Park at Pencaitland and enjoy some fun.
It can be the darkest day, you could feel at your lowest ebb and these little cherubs will cheer you up no end. Melt your heart on the coldest day and yes oh yes they can all talk. Proper little chatterboxes.
This Easter weekend was particularly lovely. Alexandra helped Granny put some stickers on the window. Girls helping Papa with the ride on mower. Then oh so much fun hunting for some eggs.
Undoubtedly grandchildren fill a hole in your heart you did not know existed. For this reason I would recommend them to anyone.
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
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.
A couple of years ago when my granddaughter then 2 had her first playdate at our house with my very close friend, Danielle’s daughter, Ella both girls played and had fun like all toddlers do. However as young as Alexandra was at the time she was caring and compassionate enough to notice that Ella was different from her. Ella is deaf, she has cochlear implants. Little did I know this first playdate would lead to us Sponsoring a hearing dog.
The girls at that young age played in the sitting room with toys and formed a bond. Two years later they are running up and down my hall laughing and shouting with dolls in their hands. When Ella left with her mum and dad Alexandra asked me about Danielle and us being friends. I told her we have been friends for a very long time, and told her you look after each other no matter what when you are good friends. I told her Danielle sends me messages and phones me to ask how I am. She visits. We all have fun, and now brings Ella to come see her. We spoke about Ella’s deafness, she said it must be horrible not being able to hear everything all the time Granny I am so sad for her. I told her not to be sad and look at how happy Ella is with her family and when she plays at ours. I think this helped.
It was raining on a Saturday afternoon and Alexandra was visiting with her Dad. She likes to be like Granny and type a story on the laptop. I had been on social media just prior to her going to use my laptop. She takes a seat beside me, she patiently waits till I close my pages. On the timeline of my facebook page there was an advertisement for Hearing Dogs for Deaf People. Oh look Granny, a Labrador like yours, but its black, says Alexandra. This stops me in my tracks. I look at what she is noticing. I close the page and let her type away.
Later that evening I go on the site Hearing Dogs for Deaf People and sponsor the black Labrador Winnie. This money will go towards training the puppy and will help change a deaf person’s life.
Alexandra now has a beautiful little cuddly pup with the familiar maroon jacket on. As soon as she opened the box she looked at all the paperwork quickly, lovely photos Granny. She quickly takes out the cuddly dog, runs along the hall and comes back with a stethoscope we need to check this puppy over. She loves the idea of having a notebook book and pen, so like my Mother. The certificate and postcards are brilliant. Alexandra has already looked up the website and seen other photos of Winnie and progression videos, her out walking, etc. It’s fantastic. Helping the charity, putting a good dog to work and most importantly helping someone who needs it – match them up with a dog and giving them valuable lifelines at times, for example Winnie will alert her new owner if the smoke alarm is going off, if there is a sound coming from the baby monitor.
I know how much I value my labradors. My lad, Buddy knows when my cancer is misbehaving. When my blood sugar has dropped too low. If my heart rate is wonky. Carries my feed items. Bella the companion Labrador, she is a treat to have, carries clothes to washing machine. Carries items along our 40 foot hall. Some days it can be a long walk for me.
If you have ever thought about sponsoring a dog I can highly recommend it. As someone who depends on a dog I know how valuable they are. I also live with a hubby that has issues with his eyes. He has had 10 surgeries to his eyes for detachment to his retina. He really is extraordinary. He pushes himself. Tries hard, still works, has a wonderful vision in life.
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.
Three years since I have came home from hospital with my peg feed after my sepsis. It has been a learning curve of a journey with great deal of highs and lows. I’m very fortunate to have a fantastic support network; the lifesaving NHS staff, including hospital consultants/nurses/dieticians, GP surgery, home visit team, CENT team and my excellent regular community visits I could not do without from my district nurses; amongst other things they deal with my dressings, peg feed and administer my lanreotide, the emotional support they offer is invaluable.
One of the members of the CENT team comes to see me on a regular basis. I get weighed, we discuss how life has been for me. How I have been , what meds I’m on and what feeds are going down my peg. They are always on the end of the phone if I feel the need to talk in between visits or if I have a question/queerie/worry. A great friendly bunch.
Kat from the CENT team at Edinburgh’s Royal Infirmary came to see me on Monday. We had a good chat and discussed my feeding regime and the speed of the pump. I told her the great news that we managed a wee break to Ibiza. My son Stuart telephoned the airline and told them about my medical condition and that I needed the pump feed and 4 bottles of 500ml per day and 5 bottles of 300mls per day – working out to quite a weight. The airline agreed to give me free 30 kg baggage there and back. Certainly cannot complain about that. After our general discussions I stood on the scales. Not happy; either of us. I’m 3kg lighter than when I came home with the peg feed fitted 3 years ago. I could have cried. I could tell Kat knew I was disappointed, I couldn’t hide it. Kat mentioned how well the tpn worked when I was in hospital. I agreed, that was what saved me and put on the weight when I had my sepsis. She recommends that she writes to my consultant and let him know and suggest that I get a central line – picc or hickman and get home tpn as well as my peg. Got my cardiologist in December and see my consultant after the year; will discuss this weightloss and eating regime then.
For most people the 10th of the month won’t mean very much. But for us folks lucky enough to be involved with The Ann Edgar Charitable Trust (TAECT) up here in Edinburgh we have chosen to have our Net Natter get togethers on the 10th of the month. The meetings don’t only take place in Edinburgh, amongst other places folk get together in Aberdeen and Glasgow.
NET Natter Meetings are informal support meetings which offer an opportunity to meet with others in the (reasonably) local area who are affected by Neuroendocrine tumours and carcinoid syndrome – patients, carers, friends and family.
I’m particularly looking forward to going to this support group today. Since I haven’t seen most of my chums from the group since I organised the music event to raise money for the charity in November. Its these guys that understand how I feel at times, take time to listen. Don’t get me wrong not that other friends and family don’t offer love, support and give great advice at times , but the mutual understanding of fellow ‘netters’ is rather unique.
Since I have been involved with TAECT I’ve had a fairly bumpy ride; in and out of hospital. The usual scans and blood tests. Trips to The Royal Free Hospital in London. Nasal Gastric tube insertion. Gastrostomy tube insertion. Sepsis, with ten week stay in hospital. During all this, amongst other things, the guys I’ve met at the meetings have messaged and telephoned me to see how I am. Visited me at home. Visited me in hospital. Helped me organise the successful tea party. And much more…….
Since November our life has been pretty hectic. My hubby, Steve, who always supports me, is by my side regardless. Has had 5 operations on his eye to try save the sight. Steve has had a detached retina. It has been problematic and not gone the way it should. Here we are in April five operations later and hoping that he will only need to wait another 8 weeks and then get one more surgery.
Needless to say we have found life fairly difficult. After surgery Steve is restricted in driving, after one week as long as he doesn’t get double vision and he can pass the vision test he can drive. This helps a great deal, both physically and emotionally.
Tomorrow morning I have Evelyn my nurse coming to the house to change my dressings and service my peg feed. It will be so good to say to her that we have been to the Net Natter meeting.
Its the start of the weekend I’m in my own home and boy am I glad to be so. A few weeks ago I was in hospital with yet another infection. It started of I wasn’t feeling too good, said to my nurse I felt horrid, my tummy began to swell, my temp rose, the leakage that came out of around my peg site increased, the smell began to get really offensive. My energy became non existent. I visited my GP, within 2 hours I was in hospital. Before I knew it connected to IV drip and on IV antibiotics. I was feeling absolutely awful, could hardly put one foot in front of the other. The familiar face of SPB came to my bed. He is the surgeon that put my gastrostomy tube in two years ago. Lavita has been a lifesaver and fed me on demand. After blood tests, X-rays, scans and careful discussion with the surgeon and the wonderful dieticians Bev and Marion it was decided it was time to change the tube.
Im not going to lie, I was bloody nervous at the thought of getting lavita taken out and another tube put in. The nurse came to tell me that I was getting my tube changed later that day. just after lunch I could hear a familiar Irish mans voice outside my bedroom. A few minutes later the doctor popped his head round the door, remember me Elizabeth? He said. How could I forget. He was the doctor that took out my jej extension. I have faith in him. My nervousness left me and I felt calm. How could I forget, I replied. He changed my gastrostomy tube. I’m not saying it was plain sailing. Mainly due to the infection, I had a lot of tummy pain and there was quite a lot of discharge and blood. There was a lot of tugging and pulling. The burning gastric acid from my stomach was trickling down my skin, it hurt like hell. He mopped it up very quickly. The saliva was running down my gums, yet my lips and mouth felt dry. We agreed that a larger circumference tube would go in this time, in the hope that there will be less leakage. We have moved up a size and a half and its fitted perfectly. I was in hospital for 5 days, and got well looked after, support from dieticians, nursing staff, and doctors fantastic.
Its took me a while to get on my feet since getting out of hospital. I have been very tired, in fact super exhausted to be exact. Regular things have taken a back seat and gosh have I missed it all. In particular not having the granddaughters at the house as often. A couple of weeks before I went into the hospital our house was full of laughter of two beautiful granddaughter’s. Our 17 month old princess was running up and down the hall saying Papa Papa, Broom Broom – she is desperate to go sit on her grandfather’s motorcycle. Grace calls from the kitchen Bella Boo to one of our labs. The girls are away on a two week holiday at the seaside. Gosh I miss their visits.
Since I have been home, I am getting my regular visits from my nurses. Getting my tube maintained, The balloon water changed. My dressings changed. Working hard on building up the old stamina 🙂
The one important thing that needs to be done next is find a name for my new tube. Its a balloon gastrostomy that feeds me through a pump directly into my tummy. Im attached to the feed 20 hours out of 24 every day. This prevents me having a hypo and helps me maintain my weight. My wonderful hubby has bought me a lovely new Michael Kors leather backpack to put my pump in, it means I can be attached to my feed, carry it on my back and still be ‘fashionable’ as well as carry other essentials with me.
If you have any suggestion of a name for my new tube, please comment. All suggestions, comments welcome.
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.