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

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.

The Tattoo

Folks have been inking their bodies for much longer than anyone can imagine.  The oldest discovery of tattooed human skin to date is found on the body of Ötzi the Iceman, dating to between 3370 and 3100 BC.  Today many people get a tattoo in celebration of the birth of their child, remembrance of a loved one, and of course expression of art.  Me myself, I have never been attracted to the idea of tattoos in the slightest on myself, however, I have no objection to anyone else having artwork on their skin.  In fact I rather admire the work the tattoo artist work does.  The first male love of my life, my Dad has one tattoo; he got it when he was in the army, it has a thistle on it and the name of my mother on it.  I used to kiss it and look at it lovingly and rub his arm and think to myself if someone loves me like my daddy loves my mummy I will be one lucky lady.  My And yes people for the record this has happened.   My hubby does have three small blue tattoos on his tummy, they are markers the radiotherapy he underwent for his testicular cancer.  In 1996 this is the way they set up the simulation and marked the skin and the patient is left with permanent reminder.  Mum and Dad were married for 60 years before Mum died, Steve and I have been married since 1986, following in their footsteps; happy with that.

Both of my brothers, Albert and Brian have tattoos, and my sister Helen has a tattoo.  After my our Mother passed away.  Albert had an image of Mum on his arm.  Helen got a tattoo in remembrance of Mum too.  We all cope in different ways with death and honouring loved ones.

I have a few friends who particularly liked to express themselves one way or another.  Whether it is eclectic dress, many colour hair changing, piercings, and the main discussion of this post getting a tattoo or five.

One of my friends particularly likes to get tattoos.  Louise is a very close friend who has became one of the family.  Lou and Keith, got one of Buddy and Bella’s pups from the first litter, he is the image of Buddy, they call him Gunner.  When the second litter came along goes without saying another puppy had to join their household.  Harris, now one year old may look like his Daddy, but majority of his characteristics are of his Mummy, Bella.  Lou, has been wonderful over the last three years, visits plentiful.  Giving lifts to hospitals.  Helping with fundraisers for Scotland’s Net Cancer Charity – The Ann Edgar Charitable Trust.  What fun we had at The Tea Party and The Music For Nets Night.

Lou is a busy lady, but if she says she is going to help – I can guarantee you she will be there.  The one thing I found harder than anything else was asking for help.  When I had to give up driving the reliance on getting a lift is essential.  The spontaneous hypoglycaemia and exhaustion means I like to plan outings in advance.  Not living on a bus route isn’t ideal.  But Ive got to admit, car travel is usually the best form of transport. So asking for help….. with Lou, you don’t need to ask.   For Many things, hubby Steve and I go together.  Both our sons, Tony and Stuart assist as and when needed.  My sister hazel helps out when she can too, which really lightens the load.

Lou messaged  me one morning Ive got something I want to show you.  Its a present.  But its only for you to see.  I really hope you like it.  I asked if she liked it.  She answered, oh i’m pleased with it.  Left me a tad bamboozled and yet looking forward, as always to her visit.

Later that morning In comes the smiling face, Buddy and Bella run up the long hall and cover our guest in a mountain of blonde hair while dutifully competing for a slobbery snog.  The kettle goes on as always.  I wait in anticipation for the ‘surprise’.   As I bring through the teas and coffee Lou takes off her sweater for the unveiling.    As I catch a glimpse of what I can see on her arm I almost drop the cup.  On her arm she has had a tattoo.  And what is it?  A Zebra.  I see her lips move, I can hear the words come out in an almost muffled way,  I got this for you.  For the first time in my life I can almost say I have a tattoo.  My heart skips a beat and brings a tear to my eye.  I had no inkling, what a lovely thing to do for me.  And to raise awareness for net cancer.  Thanks Lou.

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Why did she chose the Zebra?

In medicine, the term “zebra” is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers. “If you hear hoofbeats, think horses, not zebras.” … This because in the medical community the term zebra is universally used to reference a rare disease or condition.

You can find out much more about neuroendocrine tumours, net cancers.  And particular support in Scotland by visiting Scotland’s Net charity.  This charity was set up by my consultant and a patient,  at Edinburgh’s Western General Hospital.  Her name was Ann Edgar.  The charity can be found at http://www.taect.scot

Well I’ve Done It: I’m 50 :)

Well today its my birthday.  I am half a century – the big 50.  Many folk hide their age, dread being fifty and pretend their younger than they are.  Me, I’m happy to be here.  I feel privileged to say I have hit such a milestone.  My fortieth decade was a mixed one.  There was many happy events, lots of love and laughter which keeps me going.  However, I  also had to face a few difficult life challenging times which were so difficult.

 

Steve & Me
Happy to get up the castle

 

 

I had many occasions to have cause for celebration.  Both my sons attended university in this decade furthered their education.  Our delightful labradors, Buddy and Bella  came into our lives; the unconditional love they give is amazing, I really can’t imagine my life without the hairy beasties.  We delivered a litter of puppies from them, and have kept in touch with puppies and owners.  Now made some lovely friends.  Some wonderful children have been born in the last ten years who are really close to my heart.  There have been a few very happy weddings.  I have mad many new friends.  Need I go on.   Life is precious and for living, it is all too easy to get bogged down with our problems.  On a personal level Steve and I are as much in love as we were when we were teenagers.  I believe this is my weapon – Love.  

The one thing I am certain is in the last ten years I felt loved.  The first five years were very difficult, I suddenly lost 3 stone in weight, felt very ill, and no-one seemed to know why was wrong with me.  It took a while to get my health situation sorted out, but with the love of Steve, the boys and my parents I felt secure.   I’ve had a few hairy moments been in hospital with septicaemia for 7 weeks, and boy was that scary.  Now got my gastrostomy tube fitted.  Life isn’t always easy with a stoma.  Ive been admitted with several infections.  However, its much better than it was,  I have a fantastic medical team and nurses that come to the house which is fantastic.  And I’m still here to tell the tale and thats whats important.

The second half of my forties were slightly more challenging than the first emotionally.  Amongst other things:  A very close uncle died, my youngest son had extensive brain surgery, my Mum died, my eldest son had meningitis, hubby had eye surgery for detached retina.  But you know what we got through it all.  The boys are doing well.  Steve still has problems, and only had surgery last week again, but the brave bugger is dealing with it the only way he knows – full of courage – like a lion.  It will be three years on the 9th August that Mum passed.  I miss her every day.  We had one of those relationships that we spoke or text every day.  Mum wouldn’t want me moping around.  She was a great character, a beautiful woman that I looked up to and admired.

One day in the consulting room at the hospital my professor handed me a card.  It was for the NET Tumour Support Group that I now meet regularly with.  .  We have all became great friends.  Sadly, one of the friends that I was very fond of passed away last year.  However, I would rather have  spent time with her, laughed, cried, etc, even for one year and then felt the pain of her loss than not have met her at all.   we all meet regularly every month and have a great time.  Its not doom and gloom, we meet at each others house or in the pub.  Partners, friends, carers go too.  You can have a look at the charity’s website to see what work they do:  www.taect.scot  I’m looking forward to helping organise the tea party in Pencaitland in November for NET Cancer Day.

I’ve had cards delivered for my 50th birthday.  Including cards from friends in the Net group which is lovely.  One of my friends in the group, Barbara was very thoughtful, because my eating is restricted, she made me a flower birthday cake.  I could have cried, its so beautiful.

Looking forward to spending my 50’s  with Steve.  Doing what I enjoy.  Taking photos,  writing, cuddling my labs, crafting, etc.  My big aim is to get back into baking and cooking, just because I’m not eating as I did doesn’t mean I should stop what I love.  I got a beautiful mixer last year and boy is it going to get its ass worked off now that I have got over that hurdle.    Have a great weekend guys.  After Ive finished my treatment today My hubby is taking me to The Edinburgh Festival tonight and tomorrow night.  Tonight its Craig Hill, tomorrow its Nina Conti

 

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Dying To Look Good

You look great –  that’s the words we all long to hear.  We all want to look our best.  Whether we are nipping to the supermarket, having a lazy day,  or going out for dinner.  The last thing I want is folk to be surprised that I look normal”

So why is it that there are times when people say certain phrases to me that can set my tummy into turmoil and make me feel guilty for having an illness.  These words are usually said in such an innocent manner and no malice is ever meant.   Sometimes I can get upset by what has been said to me, regardless of how harmless the conversation is.  The person paying the compliment is usually always blameless.

The conversations and body language that are directed to me are intended to be kind and gentle.  A gentle hand stroking my arm and the words that first come out how are you keeping?    One of the ladies in our support network group particularly doesn’t like this phrase.  I have spoken to many people whilst I have been in hospital and yes they are affected by what’s said too.  Certain words affect folks more than others, the word keeping was one that some found hard to deal with.   I’m not quite sure why, as I say it’s always said with such niavity.  Perhaps it’s because the word keeping is associated with custody and criminal.  Many people with with chronic illnesses have life changing situations after their diagnosis and can often feel like a prisoner in their own home and need the help of others.  Maybe this is a possibility why keeping is not liked by this person.  I can’t go out on my own, and I’m very grateful for the help I get, not feeling sorry for myself – promise 😘.

Most of the time words said don’t bother me too much at all.  I can put them in a box and breathe.  What really drives me crazy is the tone that the  conversation is spoken to me in.  The very pitch can affect my mood, and hence a knock on affect on my health.  Most days I will banter and have fun, if something is said in a teasing manner I will take it like water off a ducks back.  However if I’m having a difficult day the slightest thing will reduce me to tears.

So why do we want to look good?  – why not?  I personally want to look like my old self.  I want to be my husband’s wife 💕.   My wonderful staff at Ninewells hospital in Dundee have specially manufactured coloured cream for my skin to put on every day.  The transformation is fantastic.  It covers every blemish, wrinkle, gives me a lovely colour.  And it looks so natural. Once it’s on properly you wouldn’t know I had cream on.   For me it takes a lot of work to look “normal” – I smear my entire body in several creams three times a day.  Steve’s cousin Anna commented on how much work it was and how good the transformation the Dundee cream made – this actually made me feel good that she was so open.

The good thing about the chronic illness.  It’s on the inside.  We can cover it up.  Put on the war paint and put on a smile 😀😀  it’s good to smile, it’s infectious. Smile and the world smiles with you.  When you are all dressed and tried your hardest to look good, whether you are dressed to the nines or in a tracksuit, and have make up on or not.  If I am happy I always look better.  I know I am loved and this certainly makes me happy.    It can be hard to look good for anyone at anytime but I will say my family and friends do make my life much better.

I love to buy and get treated to nice clothes and accessories.  My favourites are Ragamuffin, Fatface, Michael kors, Pandora.  My hubby, Steve is so good to me.  Steve wants to treat me and make me feel good, he is the one that sees me feeling so rubbish at home. And puts up with my grumpy pants sulking moods 😂😂 – for my sake just as well he loves me.

 

Farewell to a courageous brave friend

When Pamela Ter Gast and I made friends on Facebook four years ago.  Little did I know such a strong friendship would develop.  And just how much we have in common.    Our friendship began with a shared interest of neuroendocrine tumours.  Our chatting very soon veered to a personal level.lkkkkk  Pam, Dutch born now living in USA with her beloved Boo, has two kids – like me.   Only I have two lads, Pam has one of each; a girl and a boy.    We hooked up with two other Dutch zebras: Beth and Didi.  The four of us formed a close bond; sharing stories, we laughed and cried together.   We call ourselves the musketeers.   Of course we are alternative musketeers – Pam: Winnie The Pooh, Beth: Piglet,  Didi: Eyore and little old me:Tigger.

  

Pam was a very gutsy lady who I admired greatly.  You could always rely on Pammy to make you feel better.  When times were tough for any of us we would take a virtual travel together.  We posted our travels on social media and many people actually thought we were actually away to beautiful sandy beaches, climbing mountains, visiting castles and distant shores.  Now that would have been a treat 😉.  
This beautiful lady showered her kindness and picked me up on days I felt  pdown.  She always had an uncanny knack of knowing without asking……and offering that shoulder.   Pam did not stop at friending me.  She would drop messages to the men in my life.  When my mum passed away she was fab and sent messages to the boys, when Tony had meningitis she sent him a few messages asking how he was.  And on one ocassion when I hadn’t posted on Facebook  for a few days she sent Steve a message saying she was worried she hadn’t heard from me and asking if everything was ok.  As friends we sent each other photos, pictures, etc.  some would be funny cartoons to make us laugh others would be photos of landscapes or flowers.
This is a photo Beth took in Holland and sent to Pam.  She loved it.

  


Beautiful Pam with the infectious smile.  Always looking on the bright side of life.   Sharing a conversation brightened my day.  



  
Pam wanted to raise awareness of neuroendocrine cancer.  And whilst she bravely fought her own battle, she took time out to educate the public.  Giving talks, posting on you tube, etc.  Ever so proud of you Pam. 💕. 

Pam posted a video on YouTube:

A beautiful obituary in The Telegram 

http://www.legacy.com/obituaries/telegram/obituary.aspx?n=pamela-ter-gast&pid=180298509&eid=sp_shareobit
I will miss my conversations with Pam.  Her friendship was so valuable to me. She will always hold a special place in my heart.    When Pam said to me she knew how I was feeling, yes I knew she really did know how i was feeling.  There was no bullshit from this lady.   I feel priveliged to say she was my friend.    Pammy you touched so many people: your loss is being felt world wide tonight.

We exchanged many pictures, photos, etc.  This is one that Pam posted on my Facebook page.  Rather apt, don’t you think?