Prof Strachan asked me to go see Prof Seckl. That day came, on walking out of the room after seeing Seckl I felt like I had hit a brick wall. He was lovely, my kind of guy; told me how it was. And certainly left me under no illusions. A lot of water has gone under the bridge since then. Many treatments, meds, sepsis, infections, peg insertion, trips to London hospitals under the care of the wonderful Prof Martyn Caplin, etc, etc.
Living with this disease is so difficult. Every day produces a challenge and no one day is the same as the other. My carcinoid syndrome can be very unpredictable and difficult to live with. The palpations, flushing, diahrea, chest pain, weight loss, sudden drop in blood sugar, malabsorption, photosensitivity – need I say more. All these symptoms have a knock on effect.
The day my consultant Mark Strachan handed me the card with details of The Ann Edgar Charitable Trust it was a lifesaver. What fantastic support network and great friends I’ve made. Cancer Patients, their families, friends get together for net natter meetings. Share like minded conversations. We know what each other are going through. The charity runs information days by health professionals for both patients, families, friends and health professionals. I’ve made some brilliant pals, sadly a few of them are no longer with us. And boy does it hurt that they are no longer here. Two of ladies in particular I miss terribly. Thats the reality of the group. Our condition is incurable and its inevitable it is going to happen. While its hard to meet folk, get close, and know they are going to leave. Well I guess that it will happen to us all one day. And I would rather have a great time getting to know these lovely folk, sharing some time, even if it is short – shorter for some than others. When we do meet we have fun; go to the pub; have a magic show, ride on a barge, go to the garden centre, go to the theatre. I just know I would have struggled to have gotten through the last couple of years without the chat and support of my cancer buddies.
Whilst I get support from the group. I get an excellent support network from my nurses. they are absolutely fantastic and I’m sure I would go completely bonkers if they didn’t come in before lunchtime and deal with my gastrostomy tube, dressings, give me my octreotide, etc etc. Oh as well as giving my labradors treats. Buddy and Bella love Nurse Evelyn very very much.
My family & friends – you guys are amazing, as always. I couldn’t get through the day without you. It isn’t only the big things like taking me to the hospital, helping clean the house, etc its the love, a smile, touch, a simple text or WhatsApp, a short phone call – no there is no such thing as a short phone call with me – that really helps me feel better.
Since I was a child I have always love motorcycles. My brothers had bikes and I loved to ride on the back of them. When my boyfriend, aged 18 got his first bike I was soon on the back. We got married, day of our wedding to get a pair of shoes for our wedding I jumped on the back of the bike, nipped into Edinburgh and bought a pair. Day before giving birth to our first son I was on the back of husband Steve. Thirty two years later, husband and two sons, Tony and Stuart all have bikes. Steve and I have changed direction and we have gone for a Harley Davidson. We have joined a Harley Davidson Owners Club – best thing we have ever done. Days I feel rubbish Steve can go out on the bike and be with the guys. We have made many new pals. Its like a big family. Who are they? The Dunedin Chapter Scotland. They have just celebrated their 25th birthday. I go on the back of the Harley Davidson with my peg feed on. Couldn’t get on it any other way. Need my sugars to stay up. Its fun, I can put all the worries to the back of my mind and enjoy the thrill of the ride. Meeting new people is great. It doesn’t have to be exhausting I can sit on the bike and get off, join in when I’m up to it, go to a hotel for a rest and if I like or come home and sleep for the week. Its worth it. Its actually really good to be exhausted and sore and say you have actually done something. Most days I’m fatigued and sore anyway. When we want to go somewhere thats a distance away I use my disabled persons railcard and Steve drives the bike, we meet up at the location. It works. We only joined the club in February and already we have met many lovely folk and have been welcomed into the body of the kirk. Steve goes on regular rides weekly and meets up with the guys. Enjoys quality time being ‘Steve’ .
Life is for living and while I am still here I want to make the most of it and spend time with my family and friends. That includes quiet time with my hubby, time with family and friends and time with Ann Edgar Charitable Trust and The Dunedin Chapter. All help me cope with the dark days, the pain and sickness and the most awful days I just feel I can’t get out of my bed. Thanks Guys.
2 replies to “What and who keeps me going……………”
So good to see you blogging again! It had been a long time and long periods of silence make me wonder and worry! I’m so glad you’ve been getting out and having fun. I have never been on a motorcycle. The thought of it makes me both terrified and excited!
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Thanks for your comment Elaine. Yes, it took me a while to get those fingers tapping again. There has been a lot going on. And you know only too well how fragile life is and the worry of not hearing from one another. YES we have FUN FUN FUN on the Harley. Please be excited and not terrified for me. How are you my friend? Please forgive me, as you say its been a while xx