It was the bank holiday weekend and the sun was shining. For more than a year I could only fantasise of meeting up with friends or going out to events with fairly large numbers. The run up to the weekend was fairly difficult, my gastrostomy site was leaking, the pain set in and my skin became red raw. By Wednesday, treatment day with my nurses I was needing a swab taken and had a bit of a temperature. GP phoned me at 7.45am on Thursday morning to let me know antibiotics were ready for me. Woo hoo, what kind of person gets excited about antibiotics. One that wants to feel better. This weekend would normally be TITG® – our annual bike rally hosted by The Dunedin Chapter in Aviemore however it was cancelled due to Covid. Fortunately there was still time for fun and an alternative weekend in store for us down here in East Lothian. It still included some time with some Chapter members and the Harley – on Sunday I had a grand day out at Newhailes House.
As Alexandra and I arrived at Musselburgh the honest toon was looking very busy. Families walking in the direction of the estate of Newhailes House. This Sunday was a special day, there was an open day inviting members of the public. It was mainly a classic car event, with other super side lines. Dunedin had the Harley-Davidson® motorcycles, there were some sports bikes too, the fire brigade were there, the police, a fantastic array of stalls, and of course amazing classic cars. Plenty to keep us occupied.
As we walked into the grounds of the estate we could hear a very familiar sound. The roar of her Grandfather’s Fatboy. Parked in a line – the Dunedin Chapter Members and their Harley Davidson® Motorcycles. There was an eager bunch of kids waiting to sit on the bikes, lots of smiling faces. As we walked up towards Fattie we saw Steve giving a demonstration to a happy lad.
Alex and I walked round, thoroughly enjoyed the sights. Totally loved the cars, bikes, stalls, etc. Soaked in the atmosphere. Sat on motorbikes, looked at beautiful classic cars, clambered on tractors, enthusiastically stood in the long queue for the sit in the fire engine. We had a fabulous day all on our doorstep. I’m sure the Dunedin members enjoyed their day.
Since the day my consultant told me I had to give up driving my online shopping has increased tenfold. I purchase my weekly grocery shop online. The Sainsbury’s van could drive its way to our cottage on its own I’m sure. I have to admit I purchase nearly everything online, and from everywhere. I was so happy when I found out I was able to shop and give to charity without costing me a penny.
As most of my regular blog readers know I regularly attend Net natter support meetings with The Ann Edgar Charitable Trust. (TAECT) Scotland’s Neuroendocrine Cancer Charity. They are an invaluable support network as well as offer information days and zoom meetings. I got an email from TAECT letting me know that they had registered with Amazon Smile and Give as You Live.
So me being me, an avid online shopper and a huge supporter of TAECT started going onto Amazon Smile rather than my regular Amazon. I shop on Amazon frequently. I am an Amazon Prime customer and purchase several items per week. So thought it best to support the Charity. All I do is make a purchase as normal, pay the price like usual. The charity gets 0.5% of the sales every time I shop at no cost to me.
I then decided to register for Give a you live, its so simple. Register for free, and then shop online to different retailers. The retailer donates a percentage of sales to the charity. Its that simple. Companies that participate include, John Lewis, B & Q, Dunelm, H & M, Argos, Marks & Spencers, Pets at Home, Screwfix, Ebay, plus many many more. In only one week, I have shopped in John Lewis, Dunelm and Boden. £7.71 has been donated to charity without costing me any extra money.
Both schemes are a wonderful way to donate money to charity, there are a great deal of charities to choose from and many on your doorstep. All without leaving your arm chair and only for the cost of. the goods. Its a win win situation.
You can have a look at smile Amazon here. And Give as you live here. I’m sure you will agree they are both fabulous ways to help the income of charities.
So the next time you are going on Amazon to shop, instead of the regular Amazon, go on Amazon Smile. Register a charity and donate 0.5% every time you shop. If you are buying a gift for someone, treating yourself to something, getting a much needed product for the house, go through give as you live and donate a percentage to charity. It really is that simple and no extra cost to you at all.
As I have grown older I have came to realise that there aren’t many guarantees in life. The only certainties in life are birth,death and change. We are born, changes take place and we die. To make things more pleasant all round and something we take for granted in the United Kingdom is that we will always have somewhere to go when we are sick. Get taken care of free of charge and when the inevitable happens are granted A comfortable place to die.
When a person is faced with a terminal illness, at some point thoughts come racing in to the mind where do you want to spend the last days. People’s answers are very personal ones. For some being at home and spending every last possible moment being cared for in the family home is their wish. Others prefer to be cared for in a hospice or hospital environment. Either way, the experience I have witnessed personally the care given has always been outstanding. The nursing staff making sure in the last weeks, days and right down to moments comfort is paramount.
There is no getting away from it making a choice where you want to end your days is far from easy. There is an awful lot to consider. However even when all the pros and cons are weighed up and it’s been decided home, hospital or hospice sometimes it just doesn’t go as smooth as you would expect.
We may choose to stay at home and be cared for by your loved ones and supported by district nursing team. Most of the time it goes well and you get your wish and you can stay at home. The district nurse team and Marie curie nurses that cared for my Father in his home gave him a caring, dignified last few days. For that we cannot thank the wonderful medical team enough and will forever be in their debt. Home nursing teams work very hard looking after the patient, ordering drugs, equipment, supplies, communicating with other health professionals. We are lucky to have such good staff working on the NHS, providing us with with amazing service. They are dedicated, take care of the patient and make sure the family are coping too. At present I have the most amazing team of District Nurses that come in to my home and give me injections, service my stoma/gastrostomy tube, change dressings, etc. They also look out for my nearest and dearest.
However for some there can be a time that everything is all set up and there is a spanner in the works and you need shipped off to hospital and you no longer get the home care you so wished for. In a snap decision one of most difficult decisions of your life has been literally taken out of your hands. What we have to remember is things happen for a reason and getting sent into hospital is most likely with best intentions.
When we make a decision to end our days in a hospice it’s a choice that certainly does not come lightly. Whilst you get fabulous care and are in a safe and secure environment, it’s not home. Although hospices have a much less clinical feel than hospitals you can’t quite move your pet in. The biggest problem at the moment is the waiting time to go in. Main reason being there just isn’t enough palliative care beds to go around. It’s heartbreaking but the practicality is that we are actually waiting on someone passing away to then offer a bed. In the UK we get used to getting our health care and this includes all our cancer treatments free of charge. All us human beans in UK take our health care for granted; go to the doctor and don’t think about the cost. Many people think more about putting money away vet bills for our pets or saving for a holiday than donating to a charity.
Hospices, such as Marie Cure and St Columba’s, home care nursing from Marie Curie and Macmillian are not NHS or big private hospitals, they are self financing. They are charities. Rely on donations and fundraising. They offer their services free to patients who need them, at times it may be respite care where a patient goes in for a few days then goes home, or the nurses go to a patient’s home and takes care of them; gives the family help with washing the patient, changing pyjamas, changing sheets, etc, and patient staying in hospice for life end care.
On thinking about the charities, I believe we need to try and chip in a tad if we can. Next time you are eating that McDonald’s and you are about to have a Mcflurry with it; what’s the cost for the ice cream? Couple of quid? Perhaps think about matching the couple of pounds in a donation, I definitely will.
I’m in my mid fifties and have known people very dear to me that have died by their own choosing at home, in hospital and in a hospice. All very well cared for, and I can see the benefits and down sides of all. For the person that is going to meet his Maker and for those that are left behind. Me? If I mange to get my wish I will not be at home and I will not be a burden on anyone. Let’s hope this works out.
It’s coming up to the final Saturday in March and here in the UK we are all going to lose an hours sleep. We usually associate lack of sleep with things like stress, or going on a night out, or maybe the baby has kept us up crying. But this time we are getting told YOU WILL HAVE ONE HOUR LESS THROUGH THE NIGHT LIKE IT OR NOT. Are most of us going to complain about this? Heck NO! Why, it’s British Summertime. This Saturday we will spring forward.
Since March 2020 for many of us life has been pretty difficult one way or another. We have had many an incident to try us. Covid-19 struck and the world has never been the same again. Worldwide 125 million have been diagnosed with covid, 2.75 million people have died from covid. Countries have been in lockdown, many of us still have restrictions. Businesses closed, lots of folks unable to work or changing their way of working and working from home or making adjustments to their workplaces to ensure the safety of the workforce and customers. Education has been a huge challenge for both students and staff. Everyone in life feeling some sort of pressure in some way or another.
What we have to remember is everything that has been done is in the interest of all of us. When we have been told to stay at home it is for our own good and to help save lives. The vaccine is being rolled out and ticking along nicely. The elderly, frontline workers and the vulnerable were the first to get their injections. Now centres are busy working round the clock making sure we all get immunised.
As the beautiful daffodils dance in the March winds, they bring hope and I believe happiness. Our front garden has many daffodils. As the dogs run up the grass and the sun shines down on them as they pass them you can’t help but feel a warmth in your heart, even on a cool day. Yesterday my sister Hazel and my 5 year old granddaughter Alexandra walked my Labradors. They all had a lovely time. Including me; I maybe wasn’t on the walk, however I so enjoyed hearing about it when they came back and loved to see my delightful labs looking so happy. Tails wagging franticly, bottoms wiggling and big doggie cheesy smiles.
Hubby Steve came back home and Alexandra was very excited to see her Papa. Out she went and jumped on the lawn tractor. And rode up the garden, her beautiful curly hair naturally blowing back showing her delightful smiling happy face. Afterwards she came striding back to the house, grinning from ear to ear with a bunch of daffodils in her hand from the garden; won’t they look nice in the window Granny, Alexandra said with pride. And how right she is.
Tonight I will be going to bed, and setting any manual clock one hour ahead. Big benefit in UK is daylight saving. Next weekend is Easter. I’ve got a busy week ahead, stoma nurse specialist video call on Monday, big discussion and specialist training to get discussed. Specialised training to get booked in. My nurses will be in on Wednesday for Gastrostomy full service, dressing change and octreotide injection.
Lets hope the weather starts to get warmer, and life will certainly start to look an awful lot brighter for all of us.
For many 2020 has been a difficult year, and certainly for most a memorable one; it has been a year like no other I have known. My hubby and I spent Hogmanay at home on our own. Just the two of us with our beautiful Labradors. This was the first time ever we have been alone to bring in the year and say Hello 2021.
I must say although very different from our usual ceilidh, our last night of the year was a fun packed one. We took part in a family and friends Zoom quiz. Stephen organised it. A busy young Dad with three kids; Stephen and son Louis were quiz masters. We had participants from near and far. Laughing, joking and talking was definitely allowed. We didn’t come first in the quiz but did not disgrace ourselves. Looking forward to the next one.
We are one week in to the new year. Eventful already.
The balloon on my gastrostomy tube burst on Hogmanay. Wonderful efficient staff, it was changed immediately. Six days later the tube was loose, my dressing was drenched. My ever dedicated medics attended to me, yes the balloon on the just short of one week old tube had exploded once again. Nicola changed my tube and then gave me my octreotide injection. This was then a day for complete rest.
To be honest despite the feeling unwell, and the pain. I have enjoyed being home. Sitting by the open fire with my beautiful labradors. Writing and editing. We are in a second lockdown. Yes, it’s a worrying time and I so miss being able to go see my Dad. Strange times my family and friends not coming to my house for a visit. We have to remember these restrictions have been put in place for our own good, to prevent infection from spreading and a big plus point is that we have a vaccine that is getting rolled out to the general public. It will take a while but as time allows we will be able to go out more, visit and one day in the future live a “normal life”.
For some life has been more challenging. It may be they are a key worker and things are getting tough. The usual “go to” place has gone, and talking with others feels trivial. Please try and remember this when someone is looking a little more weary than normal, or talking less than usual, ask how they are – it goes a long way. When a person says they are fine, it doesn’t mean they are doing well.
During this lockdown children at present have to stay home and get home schooled. For many families this works well. But for some life is hard. In many homes there are more computers, laptops, tablets than human beings in the house. In other homes there is one unit in the home or perhaps none at all. When the children are home schooling they get work from their teachers, there are programs on television. The internet plays a vital part in a child’s education. Hence the importance of a piece of equipment to get on the World Wide Web. It’s heartbreaking to think that in this day and age of digital technology that some families lack that availability in their own homes. If you have a laptop, computer, iPad, tablet that’s surplus to requirements please think about handing it in for someone else to use. There is always someone in your area that can use it. You can find out more about recycling your products Here
Whilst the restrictions carry on I will continue with my Content Writing and Editing work. I am so lucky that I enjoy doing it. Photography is my passion. For the time being I am pleased enough with taking photographs in our garden, snapping images of things in the house, pointing and shooting my beloved Nikon at my Labradors, I think they feel like fashion models. Although my husband’s Harley is a great bike for taking photos of. Today was a grand day. I sat at my desk in front of my computer, did work on a newsletter. Then took some photos of a little visitor out our back garden. I’m sure he will be a regular visitor. A beautiful little Robin.
We may have differing opinions at the moment. Has the Government made the right call? Is the NHS doing a grand job? Should the kids be going to school? What really should be happening at Christmas. However, I think we can all agree to that regardless of our point of view everyone is needing a little festive cheer. Steve and I thought it would be a lovely idea to introduce to our community Santa Steve on his Harley-Davidson®
My husband and I don’t have the easiest of lives as many of my blog readers know. We have been through a lot in our nearly 55 years of life. Although the we both say we feel very lucky in life to still be in love after getting together in 1982. Absolutely blessed to live in such a fine county as East Lothian, even better that we have managed to secure a house in Boggs Holdings, Pencaitland and bring up our sons there, and now enjoy the sound of our grandchildren. The area is one of beauty and community supportive. Community spirit is important to Steve and I and we wanted to do something.
Since the start of the restrictions we haven’t been out on the Harley-Davidson® very much at all. In fact I have been at home and have only left the house on 7 occasions since April, and three of them were essential hospital visits. Steve has managed to take the bike out runs as and when social distancing allows; which has been great. We were talking about this and realised many people would be like me and would not have been out very much at all this year. Now as Christmas is approaching, children getting excited and looking forward to seeing Santa. There are many places parents cannot take their wee ones to see Santa this year due to the restrictions.
Steve and I are members of an organisation – this is the Dunedin Chapter is where many of us Harley owners get together and go runs together, etc. Seriously, a lot more to it than that. We love it. With the Chapter on Saturday Steve was going on the Santa toy run in Edinburgh – this is a charity run to drop off presents. He decided it may be a good idea to post on facebook to our local Pencaitland page would they like a drive by from Santa Steve in the afternoon after he had finished his charitable run with The Dunedin Chapter. Soon he got replies, Yes please.
I emailed the local police station, who were fantastic and called Steve right back that day. Gave him the authority to drive through the village. Bike dressed up in tinsel and lights, Steve in Santa suit. He left our home and I posted on Facebook he left. He drove through the village.
Steve was met with smiling faces and waving hands. I checked on Facebook; there were comments – where is “Santa Steve ?” “I’ve text you….” soon photos and videos were put up. And then comments of thanks.
The community spirit in the village brightened my day and lifted my heart. Thank you to all the children and adults who came out to see Santa Steve. I hope you all enjoyed Santa Steve on “Fattie Scot” : the Fatboy Harley-Davidson® dressed up in tinsel. I know he had a great time driving around the village and waving at you guys.
Merry Christmas and wishing all the best for 2021.
We had many many comments including:
Thank you so much, Lots of excited wee ones thrilled to see Santa
Even us ‘big yins’ enjoy seeing Biker Santa around the village! well done and thank you! Merry Christmas
Fabulous idea, great fun, thanks for bringing some joy round the village
Thank you so much for doing that, absolutely magical. My little one won’t stop talking about you! Really cheered us up on this bad news day
Very happy kids (and me) even though the tiny tot was a bit unsure
Thank you for visiting Huntlaw Road! My daughter was very excited to see you
Thanks to u for visiting Limekilns
Thanks very much for doing that…… highlight of our kids day (mine too if I’m honest)
You looked and sounded the biz! Thanks for making the effort Steve
My kids were delighted!!!!!!!! thank you so much
I think we were your first at The Boggs, Thanks so much the kids absolutely loved it
Thank you very much, we saw you from a far and there was mass excitement at our house!
Thank you it was brilliant, such a lovely thing to do
Thanks from Pringles Place. My kids loved it
Thank you for coming by the Green! My 5 year old daughter was DELIGHTED to see you!! Merry Christmas Santa Steve
Well done Santa! A much needed bit of cheer!
Thank you the kids were delighted, at this time anything that brings a smile to a kid’s face is well worth it
Such a lovely kind thing to do for the kids! Thanks so much Steve. Merry Christmas to you
Thank you my wee granddaughter Mia was chuffed to get fist bump at Queens Drive
Saw you from the window at old farm court & really appreciated it! You’re a star and sure all the little ones loved it. Merry Christmas
As 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.
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.
We all get tired. Sometimes we will wake up after a nights sleep and feel like we could go back to bed again for another session. Or sitting on an afternoon the eyelids choose to close and we need that little cat nap. Examples of tiredness like this is common and normal.
FATIGUE FATIGUE FATIGUE
Since the diagnosis of the carcinoid syndrome I have noticed that little cat naps in the afternoon have been getting more frequent. And lasting much longer. I then found at times the least amount exertion and I was tired, a tad more and then really tired, and then shattered.
I spoke to my net specialist about being so tired and he got me to describe how I was feeling, when, etc. For those of you that know me you will know this will have been a big long winded story coming from my mouth. So I went on to describe how I felt on one of these days. I gave the prof an example, after putting on my creams (all over my body) I would then walk along our hall of our cottage, on walking back my legs would start to feel like a dead weight. I was walking as if I had iron boots on. My body felt as if I was taking a giant step for mankind, when actually I shuffling along the hall. All my energy was getting used up concentrating to try and get from the bathroom back to the sitting room. Gripping onto the familiar radiator. Phew made it back to my secure safe mauve sofa. Despite the thumping heart, jelly legs and utter need to close my eyes, I feel triumphant. Not a big task for most, but on days like this I am pleased with myself. Now time for some shut eye. The conclusion from my docs ; fatigue.
Fatigue. As time has gone on I can honestly say it has became more of a problem and a darn sight more exhausting. However, accepting it and managing everyday life is the way to go. It was our anniversary, we jumped in the Audi convertible, a sunny late afternoon in August. Drive into Edinburgh, we drove to?; surprise surprise our fav restaurant Cafe Rouge for Steve to get a Steak and I enjoyed sipping a cool mixed berry spritz. Twenty minutes in the restaurant and I feel Steve gently kick my foot under the table. Biff you are dozing off, says Steve. I jump up sorry, think I need to order a set of matchsticks. Words can’t explain how bad I felt. You would think there was glue on my eyelids pulling them together. I was scared to talk for the dread of yawning. Imagine, the person I am most comfortable with in the world and yet at that moment I felt awkward for the fear of closing my eyes. It was our anniversary, a date night; we hardly go out and I certainly didn’t want to ruin it or disappoint my husband. I focussed on the room, we chatted about our day, and a few other things. It was then time to go to The Show at The Edinburgh Festival. Steve had got us tickets to see a live show. It was amazing. The music was wonderful, we both sang our hearts out. Turned out to be a great night.
I was at a Net Natter Meeting. Hosted by Ann Edgar Charitable Trust. Our Net Cancer Support Group. You can find out more about the charity at http://www.taect.scot. I haven’t been for a couple of months. Barbara, Margaret, Muriel, Eric and I were talking about exhaustion and fatigue. Eric was telling us how if he tries to do something in the garden the pains in his legs are awful. And how the fatigue can suddenly overwhelm him. Barbara and Margaret have similar experiences. I told them I had been to my GP last week to get my GTN spray, while we were chatting she was very good at explaining about fatigue and people with cancer. In many surveys or asking a person with cancer, fatigue is one of the worst symptoms that a person deals with . We were sharing stories about how difficult we find things and the need to rest. Muriel looked over at Eric smiled, turned to me and then said, think I better go easier on . We all gave a laugh. The friendship and sharing experiences at the group help a great deal. I got home from the meeting after dark. And no denying I was tired. Next day I was shattered. But its good to have reason for being exhausted.
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.