Hurrah ūüėÄ For Dunedin Chapter

As most of my regular readers, friends and family know Steve and I are proud owners of a Harley Davidson motorcycle. For the last year we have been very happy members of The Dunedin Chapter http://www.dunedinhog.com

 


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I mentioned the motorcycle club in a previous post. All folks have welcomed us with open arms into the body of the Kirk. For us it’s been a lifesaver. Gave Steve and I new people to meet, places to go. Steve, can go out ride the bike Without me and meet up with others, and when I’m up to it we go out together and boy what fun we have.

The Chapter isn’t all about riding bikes mind you. They do a great deal of charity work. Easter egg runs, Santa runs, fundraising for The sick kids, Kats Mission, need I go on. I am very proud to be a member.

TAECT promotes awareness of neuroendocrine cancer and offers support to all those affected with cancer, net tumours, carcinoid syndrome; patients and their families/friends/carers. Have regular support meet ups all over Scotland. Health information days with drs and nurses giving up their time to offer advice.

Last weekend the chapter had a dinner dance in Grangemouth. Edinburgh Harley Davidson kindly donated a couple of leather jackets and many members donated raffle prizes. On the night, Ben and Hilary went round the room with raffle tickets to sell to us party members. Drew the raffle and there were many happy faces. A very big well done to all the folks who donated and another massive well done to members for buying raffle tickets. £830 was raised for charity.

The Chapter decided to donate the £830 to one charity. That charity is one that has given me so much support, particularly over the last couple of years. Without their kindness and support at times I would have been quite lost and lonely. This charity is Scotland’s only neuroendocrine cancer charity РThe Ann Edgar Charitable Trust. http://www.taect.scot

 

As most of you will know TAECT works very hard at promoting awareness of neuroendocrine cancer and offers support to all those affected with cancer, net tumours, carcinoid syndrome; patients and their families/friends/carers. The charity has many regular support meet ups all over Scotland. Information days take place with consultants, oncologists, drs, nurses giving talks and offering advice.

 

I would like to say a big thanks to the two groups I belong for different reasons. However, both make me feel very welcome and let me be ME, no one notices my gastrostomy tube, makes comments about me not eating, etc. Its wonderful. Riding on the back of a harley davidson with a peg feed isn’t always the easiest. But we manage. Life is for living and I want to enjoy and spend as much time as I can with my wonderful hubby and hear the roar of that Harley Davidson Fat Boy ………… nothing better

 

 

 

 

 

 

 

 

Net Cancer Day

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 Рshe 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

 

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 √Ėtzi 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 ‚Äúzebra‚ÄĚ is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers. ‚ÄúIf you hear hoofbeats, think horses, not zebras.‚ÄĚ … 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