Nets/carcinoid Syndrome · Uncategorized

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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Nets/carcinoid Syndrome · Uncategorized

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.

 

Nets/carcinoid Syndrome

Where Did The Month Go?

Already its the 26th of January.  Not many days left and it will be February.  For me January has mixed emotions.  The 24th of the month is my beloved Mother’s birthday.  She passed away in the August – the first birthday she wasn’t here for was her 80th.  She was so looking forward to turning 80.  My Mum loved life to the full and all of us that surrounded her.  There is not a day that doesn’t go by that I don’t think about her.  We share many conversations about Mum and many a time we talk as if she is in the next room and is going to walk in at any time.  I guess I wish this to be true.

I have had Steve for company a few extra days this month.  I’ve had a visit from my friend Louise, visit from Jennifer & Scott.  Hazel has been down a couple of times.  Both our sons, Tony and Stuart have visited and stayed for dinner.  These visitors keep my spirits up, and turn my frown upside down, make me laugh and share stories.  The clock hands appear to move even faster than normal when visitors come to Nisbet

image

Steve has taken me to visit my Dad on a few occasions this month.  A couple of times I’ve seen my brother Brian and his wife Margaret at Dads.  I’ve also met up with my brother Albert and niece Chiara and my sister Helen &  nephew Brandon, and on the last visit to see my Dad I saw Lindsay, Stephen, Sophie, Louis & Patrick.

We have managed a couple of social outings – entertained by The Domestics at The Dalriada in Edinburgh and met up with Susan and Ian from Dumfies and Galloway for a couple of hours.  We also met up with folks affected with NETS.  The Ann Edgar Charitable Trust is a Scottish Charity – it offers NET Natter Meetings once a month – which has became fairly popular.  The meeting on 10th January was busy and a few members were keen on the idea of helping out at a craft fair, raising awareness of NETS and carcinoid syndrome and funds for the charity.  One of the members, Barbara,  brought along a peg doll she made, we have since called her Ziggy Zebra.  This inspired me to make a zebra fabric memory board.

I haven’t been feeling too grand the blasted peg is still leaking, and when I say leaking it’s a tad more than a dripping tap that’s for sure.  It started to get bad nearly two weeks ago and get really painful again, my tummy is swollen like a football and the discharge a putrid offensive smell, resembling our septic tank.  My nurse took one look at it and said get the doctor to look at this young lady.  The GP saw me that day.  She took a swab of the discharge and blood tests.  It was a Friday – I felt awful.  I had a quiet weekend at home.  Monday morning at approximately 1130am the telephone rang, it was the GP, I have had the lab on the phone.  She said.  Both your swab and blood tests have shown you have an infection.  I will write you a prescription for antibiotics and get it to the chemist for you for today.  We had a discussion on the phone how I was feeling, etc.

One week later and the discharge is not any better.  Infact I will go so far to say it looks worse and the pain at times is far more than sore or uncomfortable its aching and sometimes almost unbearable 😦  My nurse is in regularly to change my dressings and see how I am.  How long the nurse is in to see me varies.  It depends how I am both physically and mentally.  All the nurses are always very thorough and look after you very well.  On some days the nurse gives you the lift you need.  This particular day she advised me to go back to the GP. Back down to the surgery for another appointment.  Doctor agrees it looks worse that the last time she saw it.  She thinks the best plan of action is another week of antibiotics in the hope it will lift the infection.  Fingers crossed it does.  If there is still smelly discharge once the antibiotics are finished – go down to the surgery and get it swabbed.  I started the second week on Tuesday, today is Friday – I have had 2 of 4 doses today.  No difference yet.  Really hope it clears up over the weekend.

It was lanreotide week second week of January so on one of my nurse visits she gave me my lanreotide injection.    This helps stop me shitting myself and cuts down the flushing on my face and neck.  My next injection is due this coming Wednesday and the nurse I like doing the injection best is off on annual leave.  I know I will be in very capable hands – but I cant help wondering who I will get.  I can see it now –  On that day –  my treatment injection will be laid out ready for the nurse to administer.  Bella will hear the car, think she knows who it is, wag her tail, run to the door, when she sees its someone else, she will run with her tail between her legs up the hall and onto my bed….

Despite this nasty recurrent infection its not all doom and gloom for the first month of 2016.  Steve and I have booked a week in Ibiza in June,  when my community dietican was here at the house for my 4 weekly home visit a few days ago we discussed how she can help with giving me a letter for the airline/travel company explaining the need for my pump, syringes, feed, etc.  I will also get it translated into Spanish. She is easy to get on with, very friendly and makes me laugh.

We also have Lindsay and Stephens wedding to look forward to.  This is a festival wedding – it is in June.  The week after we come back from Ibiza.

Steve and I will both will be celebrating our 50th birthdays:  Steve in June, Me in August.   We are having a party for Steve.  I like to go to a party  -just don’t like to have a party for me.  Its our 30th wedding anniversary in August.

Before all these wonderful things in the summer.  I’ve got to rid this infection, hopefully the hole will close up round the peg site.  I would love to get some more energy if possible.  I have a hospital admission in March in Ninewells, Dundee for 5 days for my photosensitivity.  Dundee is the only hospital in Scotland with a photobiology unit.  I am also scheduled to see Professor Martyn Caplin at The Neuroendocrine Tumour Clinic at The Royal Free Hospital, London. in April.

This week coming is busy enough: nurse coming in to do my dressings on Monday, Wednesday nurse is coming do my dressings and administer my lantreotide injection.  Steve has the eye pavilion hospital for a check up after his retina eye surgery.  Thursday – I have an appointment with my endocrinologist, Professor Mark Strachan.  Think I will have a rest on Friday.

Its been a mixed month.   At times I have been feeling really rotten and no matter where I have been I could lie down on the floor and lie in the foetal position.  There is nothing too much I can do about how I feel physically.  All I can do is take it easy, rest up when my body tell me to.  Mentally I try and keep myself upbeat and on top of things.  What’s the best remedy if you feel low mentally?? For Me  Keeping busy helps.  Going to Nets Scotland AECT Net Natter Meeting and talking to others. Having a warm bath. My biggest love of all – taking photographs.  Writing.  Baking.  I’m very fortunate, I find it easy enough to talk and say how I feel.  Its natural for everyone to feel like the weight of the world is on their shoulders at some time,  its how we deal with that weight that matters.

Uncategorized

Is The NET Natter support groups right for me?

Socialising

The Ann Edgar Charitable Trust (aect) charity offers a support network to people with nets, carcinoid syndrome and their families and friends in Scotland.  The charity works independently as well as working in association with UK charity – Net Patient Foundation.

As part of the support services.  Folk affected by nets & carcinoid syndrome get together – informally and socially.  We chat, share experiences and very often laugh loudly.  Gives a chance to air our views, meet new people and strike up friendships.

Yesterday was my hubby’s 49th birthday.  There was a meeting arranged for the same day.  I asked Steve if he wanted to go to meeting or give it a miss since it was his birthday.  Not everyone’s idea of a perfect birthday night – spending time with people talking about injections, bowel habits, surgery etc.  Steve being Steve wanted us to go.   So we went out for dinner one our own and then headed to meet the others.

When we arrived at the pub the others were sitting at a large table in the bustling pub blethering away.  As usual a warm hello from everyone.  The pub setting is and ideal location.  Far away from hospitals; this non clinical setting Allows you to drop your guard and open up.  You find yourself sharing and telling of what has gone on since we last met up.  While friends and family can be a lifeline offering support and help sometimes I find myself halting and not actually saying how I really feel or how things have been.   The group has a very relaxed atmosphere and when you share an experience you do know others know how it really is.  Nothing helps better to lift the weight when someone says to you, yes I understand or I know how you feel.

Last night was the first meeting since Anne passed away.  I was feeling apprehensive.  It was anne that would tuck a label in whenever it was showing, grab my cheek softly with her index finger and thumb and ask how I am. Anne was such a loving friendly  lady who had time for everyone.  Her smile, kind words and sense of humour is what I will miss most.

Five minutes in and the knot in my tummy had subsided.  Sitting on the table was a large cake box.  Barbara, one of the members had baked a cake for Steve’s birthday.  Everyone was chatting away, talking about all sorts.  While we do share health experiences, we do actually talk about our everyday lives, our families, etc.  as well as football, golf, TV, holidays, and much more.  We had a newbie and her husband last night.  I’m sure she got a lot out of it and will be back.

An hour and a half in and we all shared Steve’s cake.  Barbara is a wonderful baker and the cake was delicious.  Conversations were flowing and everyone appeared to be relaxed and at ease in chatting.  The great benefit of the group is there is no cliquieness.  I’m sure even though it was a first social meeting for two of the people there they felt welcome with no awkwardness and able to talk freely.  As a group there are never hard and fast rules.    There is no fixed agenda or timings. You can stay for as long as you want or have the time.  No one would take offence if you came for half an hour and left or if you stayed for the duration of the evening.

We arrived at the pub at 7.40pm and left at 10.30pm.  On the way home in the car, Steve and I chatted about our personal feelings of the evening.  The half hour journey home flew in :  probably due to the pair of us nattering.  Usually I am tucked up in bed by this time.  I guess going out and meeting the others had me wrapped up in conversation and even gave me positive energy.

To think I was sceptical of going to meetings.  Worried they would be unwelcoming and regimental with rules and a set schedule.  I shouldn’t have been doubtful in the least.   I’m looking forward to our next hook up.

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