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.
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.
Nikki Jervis – NET Patient Foundation. Talking about patient wellbeing.
Professor Mark Strachan – Endocrinologist, Net Specialist, Western General Hospital, Edinburgh. Talking about whats new in NETs.
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
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.
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
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.
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.
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.
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 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.
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
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.
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. 💕.
The 1st of March 2015 was a rather eventful day in our house. Our loving Labrador, Bella gave birth to eight puppies. Ever faithful Buddy looked on as she delivered each individual pup. One year on and we are still in contact with five of the owners. We hear how they are progressing. It is a wonderful feeling to know that you helped delivered these little guys into the world and now they are part of another family. We get to know what joy they are bringing to others and what their role is now they have left the nest.
March 1st 2016 celebrated their 1st birthday. I sent a message to the families to say happy birthday to the dogs and hope that they were well. I got messages and pictures back. It makes me feel good to know that the dogs are loved and well cared for. And I am more than happy to be in touch and have made new friends through our dogs having a litter of puppies.
Kai had a birthday party, with dog friends invited. Kai got presents, cards and cake. A lot for a one year old dog. ‘a couple of the pics from Kai’s party. He had a great time, ran rings around everybody. Was hard to get some pics with the bedlam going on. He had 3 doggy friends in all going bonkers lol Wee Millie the cocker spaniel is knackered. He’s totally spoilt but we love him to bits.’ Kai lives with a lovely couple who keeps up updated on his progress. He is a lucky boy to be in this family; well loved and will always come first. You can tell by just looking at them that they were meant to be. Kai fits into his home so well. He sits on the sofa, looking around like lord of the manor.
Sandy went to live with a couple with a little girl. He is loved to bits by the family. I got a message that said ‘Hi Elizabeth we are all doing well. Nobody can believe that Sandy isn’t one yet because of his height. He has the square nose like his Daddy. We will have to bring him to see you all, but will ring first. This photo was taken at Halloween, he loved his spider, it only lasted a day. Sandy loves cuddles and up at the school he barks if people don’t come over and pat him. He’s a case, he patrols the back garden and barks if he sees something he is not happy with. He loves the trampoline, you should see him and Aimme jumping on it, they are great pals’
Jake is a lovely Labrador that lives with his human parents (who love him very much) and two pussy cats. He is a cuddly dog, who loves to be pampered and snuggled in. He is like his parents and is quick of the mark in running around and playing with toys, but equally likes to lie in and if you didn’t know them better you would think they were lazy and thought they were lying there all day. Jake likes to tell you what he wants. His folks sent me a message with a photo of him sitting up straight and it said ‘that is the baby telling you he wants this’ and then a photo of him outside. Clever dog.
Gunner, is the only fox red Labrador exactly like his daddy, some of the others have similarities, but Gunner is a dead ringer for Buddy. Gunner has gone to live with Louis & Keith, they have a boxer bitch, Brandy and a couple of cats. Gunner has fitted in perfectly. Louis and Keith have become our friends. They pop down to see us, with and without Gunner. Louise and Keith came to see me in hospital, they couldn’t bring Gunner so brought a beautiful framed photo, this fair cheered me up and let the staff see one of the beautiful dogs Bella has given birth too. Its been a win win situation. Louis and Keith take Gunner and Brandy on lots of outings, the dogs enjoy lots of walks . Gunner is also getting trained to the Gun with Keith. Merely as a hobby, both man and dog appear to love it. Gunner is very protective like his Dad and follows Louise around the house and sits and waits whilst she has a bath, etc.
Harley, had a lovely birthday. He got a cake and presents, as you can see in the photographs. Harley left us at 6 weeks old. He gets well cared for by Sally. He has another Labrador as a companion, his name is Cooper. Sally has taught Harley well, he does what he is told, gives paws on command, rolls over, does all sorts of wonderful tricks. Harley loves long walks and running around with some of his other furry friends, but I think most of all he likes to get very wet and muddy: just to keep Sally on her toes. We have kept in close contact and I get kept up to date with all his progress. Sally has brought Harley back to ours for a visit. They have visited to meet up with Gunner and had lots of fun with their parents, Buddy and Bella. And they have visited for a quieter visit, just Harley & Sally. Where Harley has had a cuddle and played with Buddy and Bella for a while.
It was a big decision for us to breed Buddy and Bella last year. Would we manage with the pups with the way my health is the way it is? How busy Steve can be for work? We talked about it at great length. Then decided to let nature take its course. They mated on 1st January 2015 and Bella gave birth on 1st March 2015. I’m not going to say it was easy. Once the puppies got to the three week stage and they were needing weaned onto porridge, it began to get a bit of hard work. But the first three weeks, Bella kept them clean, fed them and to be honest you hardly heard a peep out of them. When they started eating the porridge they were like little gremlins – yum yum yum. Got to say though, all well behaved, and kept to their own bowls. The key was organisation. Steve’s cousin, Anna, from Suffolk, came to stay with us for one week, she was a great help, washing floors, feeding pups, etc. Steve and I had most of the feeding and cleaning down to a routine, Steve did all the manual heavy work. I will admit it was hard work, however it was worth every minute of it. The cuddles from the little puppies, the joy and warmth we get from both Buddy and Bella. When the day came for the new owners to pick up their pup and take it home, you could see how excited they were, the looked at the puppy all doe eyed and eagerly told us of the items they had purchased for their new addition and how they could not wait to get home and show them their new bed.
When my phone texts or I get an email to say how well one of Bella and Buddy’s pups are doing I feel a sense of warmth and a big grin comes across my face. My dogs are special to me and I’m so pleased their children are have a special place in the hearts of the people they live with. I’m so happy we had a litter of puppies. The company of my own dogs, the new friends and hearing how the pups are getting on and developing into fully grown dogs is great for me. There are days I don’t feel well enough to go across the door. The contact with others, communicating, happy stories – it all makes the world a better place.