Net Cancer Day Forum

Yesterday was November 10th. On the Cancer Calendar this is World Net Cancer Day. In Edinburgh the Scottish Charity, The Ann Edgar Charitable Trust hosted a forum at The Novahotel. And what a great informative event it was.

After being offered a beautiful buffet lunch, chance to meet other patients and folk interested in nets David Drummond, chairman and partner of the late Ann Edgar opened the show with a warm welcome. We were then given presentations from great speakers:

NET specialists from throughout the UK gave up their Sunday to give presentations. Offered their expertise and answered questions to patients, families, friends and people generally interested in NETS.

Margaret Boe – The Ann Edgar Charitable Trust (TAECT) . Trustee and wife of Net Cancer Patient, Norman Boe. Margaret is retiring and handing over the baton to Priscilla Fernandez.

Margaret Boe

Katie Gibson – NET CNS at Western General Hospital, Edinburgh, Talking about patient and carer support in Scotland

Lucy Dornan – NET CNS at Beatson Oncology, Glasgow. Talking about PRRT programme in Scotland.

Lucy Dornan from Beatson talks PRRT

Nikki Jervis – NET Patient Foundation. Talking about patient wellbeing.

Nikki Jervis

Professor Mark Strachan – Endocrinologist, Net Specialist, Western General Hospital, Edinburgh. Talking about whats new in NETs.

Professor Mark Strachan

Dr Lucy Wall – Clinical Oncologist, Western General Hospital, Edinburgh. Vitamin Research Project. Results to be presented in UKINETs.

Mark Strachan and Lucy Wall set up the first NET clinic in Edinburgh 14 years ago. Fourteen years since the first Net patient walked through the doors, with a great deal of progression since then. All for the good of course.

On the way to the event I had a sneaky look at my smart phone. An Apple I Phone – I have stayed loyal to Apple, the great Steve Jobs lost his battle with NET Cancer in October 2011. As I looked at my twitter feed I saw my friend Kath had promoted awareness of the disease in her local paper. Well done girl. I can relate to the piece so well, as I am sure many people with a NET diagnosis can . If you would like to read Kath’s feature please click on the link

https://www.stokesentinel.co.uk/news/stoke-on-trent-news/i-feel-like-im-sitting-3517787?fbclid=IwAR2HyssDuZs9hekMPjfDhlcWDtzBIlf5KBA9TSTgdt3IfXXD40-RunU9K3Q

On entering the hotel I turned my phone off, no interruptions. However, at the coffee break I turned on my phone. A couple of messages. From each of my sons. Both checking up on their old folks and letting us know they are doing ok. One of the texts came with a photo of Granddaughter, Alexandra – she found her Daddy’s scalextric at our house and was loving playing with it. Knowing our boys were thinking of us warmed my heart.

Our Alexandra finds Daddy’s Scalextric

As we were packing up to leave we got in the car and I turned my phone back on. Stuart and Alexandra called to say Alexandra was going back home and we would see here Thursday. Her Wee voice echoed in our car can you hear me Granny? When I let know I could she blethered away. She said I helped my Daddy put your lights up – they are very bright. Then she said I love you Granny and I love you papa see you after nursery xxxx

10th November Approaching……

For Me November has always been a fairly memorable month. I have a brother with a birthday at the beginning of the month and a sister with a birthday at the end of the month. The last day of the November we celebrate the Patron of our country – St Andrews Day. Guy Fawkes night; 5th November is a special night on our calendar – Steve and I got engaged in 1984, what a wonderful night that was. Fireworks at my parents and then a trip to Edinburgh with Steve and some university friends.

All of these dates are still in the diary, special to me, with some others added. And now there is one anniversary date that is noted worldwide. The date is November 10th every year. Its NET Cancer Day. Aiming at promoting awareness. Folks all over the world raise awareness in different ways.

Me personally, I have organised, with the help of friends, a tea party and a music night. Both events were on the weekend of the NET Cancer Day and raised money for The Ann Edgar Charitable Trust. Three years ago I did some something myself, just simply smiled every day for 21 days and asked folks to donate something, even if it was a penny. My consultant, Prof Mark Strachan, the fantastic late Linda Story and myself did a radio interview, fairly lengthy – raising awareness two years ago. Many people have coffee days – lets talk about nets.

This year, 2019 – November 2019 is a Sunday and I’m looking forward to going to The NET Forum organised by The Ann Edgar Charitable Trust in Edinburgh. There will be talks on offer from Net Specialists; Consultant, oncologist, Net Nurse. Charity Trustees. Information will include PRRT Information, Patient and Carer Support, whats New in Nets?, Relaxation.

Forums allow others to get together, whether its other patients, their family or friends, health professionals and people generally interested in finding out about NET Cancer. You get a chance to ask questions about symptoms, treatments, etc, and meet other people with the same rare condition. Its absolutely wonderful that health professionals are willing to give up their Sunday to share this time with us folks that want to go to the forum. Its great to see passion in the doctors and nurses outside the hospital. It makes me very proud and confident in our NHS.

For anyone thats interested in finding out more about The Ann Edgar Trust. You can look them up, at http://www.taect.scot They really are a good support network, our monthly net natter meet ups, chat on facebook. And at times we get together and do something together outwith the meeting. It really does help turn that frown upside down.

What and who keeps me going……………

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.