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

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.

Fatigue

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.

 

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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.

Friendship: that stands the test of time

IMG_0307           Friends.  We all have them.  What does

friendship mean to you?   How do you define a good friend?  I guess we would all have different answers. What’s important to me does not necessarily sit high in the rankings for you.  We also have friends and ‘friends’.  There are those that will be by our side for the rest of our days and there are work chums, social meet up buddies etc.  There are friends we will never meet in person; social media hook ups, pen pals.  We can build up great relationships and share common ground, learn all about their country, etc.  The support that can be gained from a friend that you will never meet in person can be invaluable.   The fellow patients and carers/friends/family that I have met through the support network charity The Ann Edgar Charitable Trust has been just fantastic.  We meet , talk about all sorts, support each other and friendships have developed.  To be honest I never thought I was one for sitting in a room full of sick folk, that want to chat about their condition, but actually making the effort to go out on a chilly evening, have a blether and a cuppa and most of the time a jolly good laugh. I usually always go home in a much better frame of mind and feeling a whole lot better than when I woke up that morning.

 

For those of you that have read my blog you will know that family is the most important thing in my life.  I’m the youngest of five.  The closest to me is Hazel with a 6 year age gap.  The other 4 are closer tother in age.  Mum and I developed a great friendship, from a young age she took great interest in activities at school etc.  I remember running home from school eager to tell her all about my day.  Mum and I spoke every day, even when I got married.  Perhaps it was just a short phone call, but the blether would take place non the less.  Mum died 5 years ago there is not a day that goes by that I don’t think of her and miss that conversation.

 

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I have talked in previous blog posts about friends.  As someone who can no longer drive and with numerous problems such as fatigue, hypos, pain, etc.  Friendship is extremely important.  Now as adults, I’m no longer that kid hanging on to my sister Hazel’s skirt and we are great pals with wonderful support.  Support and help has came in different ways from different ways .  Two friends that I value, really care about and have been particularly helpful over the last year are Sally and Louise.  My  husband, Steve, is  the best friend you could ask for.  We spend a lot of time together and never seem to tire of each others company.

There is a pal that I haven’t spoken about in my blogs.  On leaving high school I decided to go to university in Edinburgh.  on my first day I met this quiet country girl from Callendar.  We hit it off instantly.  At the end of year one I decided to leave auld reekie and study in the city of discovery, Dundee.  This in no way hampered our friendship, we remained friends through studying in different cities, marriage, the birth of both of us having our sons.  Both of us are god mother to our first born.  Tony now 30 and Scott in his 20’s, my how time has flown.  Jennifer was sitting on my sofa a couple of weeks ago on a Sunday afternoon chatting away with Steve and I.  Just the three of us, it could have been 34 years ago, with the exception of some of the conversation subjects.  Amongst other things, We had the 4 lads to talk about, Tony, Stuart, Scott and Cameron.   Over the years Jen has been a great loyal friend.  Someone I can trust, share a problem or a secret with.  In the early 1990’s when I needed breast surgery, Jennifer came early in the morning to give me a lift to the hospital, physical and emotional support before the op, just what a pal needs. While my poor hubby was rushing around with two youngsters.  When Steve was getting his radiotherapy a trip to  the country club for one week was organised by Jennifer, really appreciated it.  Since this diagnosis, Jen has been a great pal; known her place.  Text enough, but not too much.  Visited when I’ve been ‘ill’ in hospital.  visited us at home but kept away when she thought we need space.   You know your pal is your pal when you don’t feel you have to put on a face, or tidy up for them visiting.  You aren’t embarrassed if you can’t afford the bill and you can tell them.  We are made of similar cloth and I’m definitely not afraid to say anything in front of Jennifer.  Still a pal after all these years.  Thanks.

Its The 10th of The Month Woo Hoo !!

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.

 

 

 

Netty-in-Kilt

 

You can find out more about The Ann Edgar Charitable Trust here

 

 

Making The Most………

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.  

Our Support Group Has A New Website

When a patient with carcinoid syndrome, Ann Edgar and Endocrine Consultant, Professor Park Strachan,  got their heads together a very much needed charity was set up in Scotland:  The Ann Edgar Charitable Trust.

The Ann Edgar Charitable Trust (TAECT) is Scotland’s only dedicated charity to help and support those affected with neuroendocrine cancer and tumours and carcinoid syndrome.  It’s other main aims are to educate and promote awareness.

The South east of Scotland already has a wonderful support network set up.  We regularly meet on the 10th of each month.  We try to have a variety of meetings to cater for all walks of life and age.  Sometimes it’s lunch at Lauriston Farm, or a quiet drink at a bar in Edinburgh.  We have all met at a fellow patients house for afternoon tea and enjoyed lovely sandwiches and cakes.  June is a craft fair with home baking to which general public can attend, and July we are going to a garden party at Barbara and Alister’s house.  Looking forward to the home baking and beautiful gardens as well as seeing the lovely friends I have made.  It’s certainly not doom and gloom, the room is always filled with laughter.

Steve and I attend the meetings regularly and look forward to going to them.  We have genuinely made some lovely friends.  It’s good to be able to say you actually enjoy the company of the others, I have missed some due to being in hospital with this damn infection.  I can honestly say there isn’t anyone that wallows in self pity or looks for sympathy.  We are a mixed bunch with lots of stories to tell.  There is always someone willing to offer some advice without being pretentious.

Yesterday 26 May 2016 a brand new website was launched.  And I think it looks pretty cool. All comments are welcome.
You can see the website at http://www.taect.scot

Please have a surf, the site has useful information and I would love to know what you think of it.