Nets/carcinoid Syndrome · Uncategorized

A visit to cardiology: how low is too low?

Since my recent hospital admission the chest niggles I have been experiencing over the last couple of years have been somewhat more problematic.    So an outpatient appointment with the lovely Dr Denvir at The Western General on Wednesday afternoon was arranged.  Steve accompanied me, even though it was a hospital visit, as usual it was lovely to spend time just the two of us.

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Got there with 10 minutes to spare – time for a quick pee, a plenty of time left over for walking to the clinic, getting checked in and taking seat in the not too crowded waiting room.  No sooner was my bum on the seat and my name shouted.  Weight, blood pressure and ECG all done before I saw the doctor. I took a seat back beside Steve and expected to wait quite a while.

Less than 10 minutes later Dr Denvir called on me.  Steve and I entered his consultation room.  He was wonderful gave us plenty of time to talk and ask questions, he explained everything in detail.  We discussed in depth the pain I get in my chest, how often, how I feel, etc.  I was telling him how at times the weight on my chest feels so heavy, other times the pain is worse, and my mouth gets very dry and then the saliva runs down my gums, I need to sit on the floor and wait on the pain passing. I feel very breathless.  It can take 15 minutes to go away.  He listened to my heart, had one of those poker faces – he didn’t have any kind of expression that would shout out something instantly to you,  and he did not make any sounds; no umming or ahhing, while he was examining me.  There was no guessing.   In a way it was reassuring.  He made me feel at ease.   He rolled up my trouser legs and said my your feet are very cold.

Steve told him I wear an apple watch, and told him about the heart app.  And asked how low should your heart rate go down to.  Dr Denvir asked why.  Steve told him I wasn’t looking too good so we looked at my watch to see what my heart rate was sitting at.  My heart rate was 18 beats per minute.  He looked at us,  well gadgets such as apple watches aren’t always exactly accurate, however that is low.  He went on to say,  they are sometimes 3 or 4 units out.

After our lengthy discussion, Dr Denvir has decided the best plan of action if for me to use a GTN spray when I get the pain.  He also sent me for an echocardiogram that day.  I got my heart scan on the Wednesday, so he could see what was going on.  He says that he believes that the problems are coming from my carcinoid syndrome.  He wants to see me  in 4 months, however if I feel worse before then give his secretary a phone and he will see me sooner.

As we were walking to the car,  I said to Steve he was very thorough and very nice; I like him, Yes, Steve said to me, but he didn’t say what was too low for a heart rate for normal. 

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Nets/carcinoid Syndrome · Tube Feeding · Uncategorized

A trip to Edinburgh’s Royal Infirmary

Saturday evening I’m lying on my favourite sofa propped up by a mountains of cushions all set to have a quiet evening with the love of my life.  It’s 8pm and I turn and look at Steve, don’t feel too good, I say.  I can feel my tummy erupting like a volcano, gurgling and burbling .  I slowly ease myself of the sofa and head to the bathroom.  MADE IT JUST IN TIME.  Boy it wasn’t pleasant, I know no-one passes perfume, but the aroma was the stench of the septic tank when the pipe was ran over by the farmer and it leaked into the back field, believe me that day wasn’t pleasant either.  Although it was minus the tummy pain and all that came my way over the coming week.

From 8pm till 10pm the running to the loo got more frequent, yes my lanreotide is half way through, and I get diarrhoea, but it hasn’t been this bad for a long time.  I was exhausted.  I dropped off to sleep.  An hour or so later I woke up, feeling freezing, the pain in my tummy so bad I felt I couldn’t move.  I remember whimpering like a baby, and thinking to myself get a grip woman.  I just couldn’t.  I looked over at Steve.  He said While you were sleeping I had to run to the loo too, we both must have a bug.  I managed to get myself to the bathroom again, it was fleeing out.  oh no, here comes the sickness.  The first thing I could grab was granddaughter, Alexandra’s Potty.  I opened my mouth, no effort; out came the most horrendous vile and obscene volume of brown sickness.  Once it started I could not stop.  I began to sweat.  The next thing I remember Steve picking me up in the hall, all I had on by this time was pants and a cami vest.    Back on the sofa at last.  I felt safe.  I had the potty by my side.  Thank goodness it has a lid.  My head is banging, pain in my stomach, thumping in my chest; palpations like I have never had before.  I drifted back to sleep.

I suddenly wake, Its roughly 2am.  I have this crushing pain in my chest.  Feel like Im going to suffocate.  The pain moves to my shoulder.  To be honest, I don’t know if its two seconds, two minutes or ten minutes later.  All I know is I’ve never had pain like it and its frightening and very very lonely.  I thought I was going to meet my Maker. I lay quiet and let it pass.  My tummy was so sore, fortunately I had a pad on, one less thing to worry about than waking up on the toilet floor and poor Steve trying to deal with that too.

Before I know it its 7am.  I say to Steve, You need to call a Doctor, I really don’t feel well.  Steve called 111, spoke to the advisors, they decided the paramedics needed to come.  The ambulance came quickly.  The paramedics were super.  I can’t remember too much about them, but what I can and what Steve tells me, they were kind, caring, super efficient and very professional.  The one thing I do remember is I felt in so much pain and so sick I couldn’t hold the gas in air to my mouth, the paramedic  gently placed it and held my hand and told me I could press the button to release the gas for pain relief.

 

 

edinburghroyalinfirmary

 

 

I believe A & E was busy but with being brought in by ambulance in total agony, having a temperature on 40.9, having low blood sugar, I was very irritable and confused and that was all before routine blood tests,  I got treated and seen right away in immediate care.

For me the day came and went, my voice was Steve.  They took blood.  I had elevated white cell count, elevated neutrophils, high troponin, low potassium, low magnesium, abnormal ECG.  I needed to be admitted to a ward and to a room of my own.   Within minutes of the results the bags of potassium and magnesium were intravenously going into me.  A nice big dose of IV morphine to keep the pain at bay, an intramuscular injection for sickness.  An IV dose of hydrocortisone steroid replacement.  With ECGs every 3 hours.    They got me settled in a bed and ready for transfer to a single room.  Steve drove home for some personal things for me and came back, he is such a support, he goes that extra mile for me all the time; what a star.  He is my shining light.  When I woke up and he wasn’t there what an empty feeling I had inside me, then I just closed my eyes thought about him and once again it felt like we were together.

The staff had a lot to do to get me comfortable, once I was all settled in a bed at the Medical assessment ward, they got me moved to the appropriate ward.  I was moved to ward 207.  Where they were prepared for me, had my single room sorted and its a ward that is used to patients with artificial feeding which is great.  207 is Edinburgh Royal Infirmary’s busiest ward.  I spent one whole week in the ward.  My next blog post will be my weeks experience.

 

Emotions · Nets/carcinoid Syndrome

First Steps To Writing A Care Plan

nursing_care_plan_by_nica388

 

I had an appointment at the Western General Hospital with a consultant I have never seen before.  The Team she is with is The PACT Team.  This is Patient Experience and Anticipatory Care Plan Team.  The main purpose of the meeting was to discuss my health problems and for the consultant to take notes and later write up a care plan which can be accessed by A & E staff and out of ours doctors, to better understand my health problems and my preferences.  Once the plan is written up a copy will be sent to my consultants, my GP and myself.

 

It was rather a daunting experience, chatting about any possible imminent admission to hospital.  The consultant was lovely, and she explained everything.  It gave me every opportunity to talk and ask questions.   We discussed what brings me into hospital and what is best for me and what staff would benefit from knowing.   She asked me some very personal questions and I gave her truthful answers.  It was easy to chat to her, she was kind and caring.  She turned the computer screen round so I could see what was type written about me.  There it was in black and white: various medical conditions that affect every day life.  Just for a moment it was once again like hitting that brick wall.  I looked at the screen the words were a blur.   Seconds later we were chatting…………

 

Do I think I will benefit from the care plan?  Hell, Yes!!  The Doc took note of all the problems; e.g. carcinoid syndrome, profound hypoglycaemia, labile blood pressure,  gastrostomy feed tube (leaks), poor co-ordination, photosensitivity, hydrocortisone replacement therapy, lanreotide injections every 21 days etc. etc, etc.  And she made a note of what staff need to have available for me.   Fingers crossed Im not in anytime soon.

 

Nets/carcinoid Syndrome · Tube Feeding

Dedication of my nurse & new dressings

Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube.  After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage.  It is apparent that the surrounding area is never going to totally heal.  The health professionals have tried their best.  I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings.  My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore.  After the trial and error of creams the best one and the one to stay is the cavilon lollipops.  They act as a barrier, and its a wonderful life saver I can tell you.  As for the dressings, well many have been tried and tested.  At one point I looked like I had been shot.  I was covered from my breasts to my waist.  The nurse on the ward thought it best to keep it all sealed.  This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast,  dressings, and good old fashioned crepe bandage.  The dressing that worked was the foam dressing.  A hole was cut in the dressing and it was wrapped round my peg.  The only trouble with this is the amount I leak out.  The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.

 

 

My nurse, Evelyn, that comes in and changes my dressing at home noticed this.  Evelyn is a dog with a bone.  One day she came in with a booklet and a different dressing.

Do you fancy giving this a go?  She asked me. Can only give it a try was my answer.

So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply  it.    This dressing is designed to absorb the leakage.  And guess what – it does it so well 🙂   I have even noticed a reduction in the odour.  The combination of the barrier and the new dressings, my skin is much improved.   Its far from perfect and it will always leak.  But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful.  Cant see me  shifting from the Keramax dressings in a hurry.  And as for my nurse well she is a star.

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 · Tube Feeding

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.

 

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.