More writing and less riding

As the days are getting shorter, temperature is dropping and the amount of ideal biking days for someone like me are few and far between. I find myself having more time to sit by our beautiful open fire and being grateful that I can reflect on events over the last few months. And hopefully look forward to what the world has in store for us all as the shortest day of the year will soon be here and then the days get longer, we have a vaccine thats getting rolled out for Covid. Since April I have only been out of the house for essential visits, such as the hospital. In total, I have been out of the house a total of 9 times since April. When the restrictions were relaxed I went out with with hubby and some friends from The Dunedin Chapter, under strict social distance for a Harley-Davidson® bike ride. At the beginning of September I took the position of Editor with The Dunedin Chapter, I so enjoy writing about the motorcycles, events, editing members articles, etc. Despite the fact I love being on the Harley-Davidson® I have got to admit I have benefited from having quiet time, time for me and certainly endured More writing and less riding.

The last few months have been fairly stressful health wise. Lavita – my gastrostomy tube has been playing up. I was in utter agony with my last change. The lump on my shoulder is giving me some grief and the pain in my humerus at times is unbearable. I remember 24 years ago I was at nuclear medicine with my Dad, he wasn’t feeling well at all, and he the pain he had was eleven out of ten. The consultant said to him I can clearly see you are in a lot of pain, however you are not complaining. My Dad said to him, I just close my eyes and take myself on a journey, close out the world and try and dream it all away. It doesn’t take it all away but it helps, my Dad told him. I took this with me that day. On the days I feel I can no longer cope, I think of my Dad and his journey.

While I am on my mind journey I can relax, take time to myself. I can think about what may be in the spring. Hoping to get out on our Harley. Have the boards put on the back for my little feet for comfort for those longer rides. Get the Nikon out and take some photos of our beautiful country. As usual the medics have been looking after me; appointments that cannot be met in person have been on the telephone or video call. So I am fairly confident as and when the weather breaks and getting out and about restriction levels allow us to travel around safely I will be able to ride pillion with my hubby.

The one benefit of being at home is I have been able to write a lot more. I find pleasure in writing for myself and other companies and organisations. Working as Editor for The Dunedin Chapter Scotland HOG® #9083 I have just completed my first quarterly Newsletter. I have been humbled at the amount of caring messages from members. Lovely emails and texts saying what a great Newsletter, so kind. Working on Newsletter was hard work, working to deadlines, fitting around others, editing folks work; taking out some parts that I know they would really want in but know that I was tight for space – all in a days work for the Editor. Yes there was lots to do, it took many hours, a lot of the time it was at an hour I haven’t been used to tapping my fingers on the keyboard on my beloved Apple. However when its a subject you are passionate about, the folks sending in articles are lovely and most importantly the team you are working alongside are supportive. It makes me feel proud to be party of a warm and friendly happy Harley Family.

On The Fatboy Aviemore, Scotland TITG® Mass Ride

Thankful for my smartphone

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.


Buddy and Bella with Alexandra

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 cancer 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.

Leaking gastrostomy tube

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.

My gastrostomy balloon had fallen into my jejunum.

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.

The Drawing by my consultant