Nets/carcinoid Syndrome · Uncategorized

3 years later and 3 kg lighter

Three years since I have came home from hospital with my peg feed after my sepsis.  It has been a learning curve of a journey with great deal of highs and lows.  I’m very fortunate to have a fantastic support network; the lifesaving NHS staff, including hospital consultants/nurses/dieticians, GP surgery, home visit team, CENT team and my excellent regular community visits I could not do without from my district nurses; amongst other things they deal with my dressings, peg feed and administer my lanreotide, the emotional support they offer is invaluable.

One of the members of the CENT team comes to see me on a regular basis.  I get weighed, we discuss how life has been for me.  How I have been , what meds I’m on and what feeds are going down my peg.  They are always on the end of the phone if I feel the need to talk in between visits or if I have a question/queerie/worry.  A great friendly bunch.

 

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Kat from the CENT team at Edinburgh’s Royal Infirmary came to see me on Monday.  We had a good chat and discussed my feeding regime and the speed of the pump.  I told her the great news that we managed a wee break to Ibiza.  My son Stuart telephoned the airline and told them about my medical condition and that I needed the pump feed and 4 bottles of 500ml per day and 5 bottles of 300mls per day – working out to quite a weight.   The airline agreed to give me free 30 kg baggage there and back.  Certainly cannot complain about that.  After our general discussions I stood on the scales.  Not happy; either of us.  I’m 3kg lighter than when I came home with the peg feed fitted 3 years ago.  I could have cried.  I could tell Kat knew I was disappointed, I couldn’t hide it.  Kat mentioned how well the tpn worked when I was in hospital.   I agreed, that was what saved me and put on the weight when I had my sepsis.  She recommends that she writes to my consultant and let him know and suggest that I get a central line – picc or hickman and get home tpn as well as my peg.   Got my cardiologist in December and see my consultant after the year; will discuss this weightloss and eating regime then.

 

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Nets/carcinoid Syndrome · Uncategorized

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.

Nets/carcinoid Syndrome · Uncategorized

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.

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. 

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.

 

 

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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.

 

Nets/carcinoid Syndrome · Uncategorized

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

Nets/carcinoid Syndrome · Uncategorized

Its The 10th of The Month Woo Hoo !!

For most people the 10th of the month won’t mean very much.  But for us folks lucky enough to be involved with The Ann Edgar Charitable Trust  (TAECT) up here in Edinburgh we have chosen to have our Net Natter get togethers on the 10th of the month.   The meetings don’t only take place in Edinburgh, amongst other places folk get together in Aberdeen and Glasgow.

NET Natter Meetings are informal support meetings which offer an opportunity to meet with others in the (reasonably) local area who are affected by Neuroendocrine tumours  and carcinoid syndrome – patients, carers, friends and family.

I’m particularly looking forward to going to this support group today.  Since I haven’t seen most of my chums from the group since I organised the music event to raise money for the charity in November.  Its these guys that understand how I feel at times, take time to listen.  Don’t get me wrong not that other friends and family don’t offer love, support and give great advice at times , but the mutual understanding of fellow ‘netters’  is rather unique.

Since I have been involved with TAECT I’ve had a fairly bumpy ride; in and out of hospital.  The usual scans and blood tests.  Trips to  The Royal Free Hospital in London.  Nasal Gastric tube insertion.  Gastrostomy tube insertion.  Sepsis, with ten week stay in hospital.  During all this, amongst other things, the guys I’ve met at the meetings have messaged and telephoned me to see how I am.  Visited me at home.  Visited me in hospital.  Helped me organise the successful tea party.   And much more…….

Since November our life has been pretty hectic.  My hubby, Steve, who always supports me, is by my side regardless.  Has had 5 operations on his eye to try save the sight.  Steve has had a detached retina.  It has been problematic and not gone the way it should.  Here we are in April five operations later and hoping that he will only need to wait another 8 weeks and then get one more surgery.

Needless to say we have found life fairly difficult. After surgery Steve is restricted in driving, after one week as long as he doesn’t get double vision and he can pass the vision test he can drive.  This helps a great deal, both physically and emotionally.

Tomorrow morning I have Evelyn my nurse coming to the house to change my dressings and service my peg feed. It will be so good to say to her that we have been to the Net Natter meeting.

 

 

 

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You can find out more about The Ann Edgar Charitable Trust here