Tag: neuroendocrine tumour

Nets/carcinoid Syndrome · Uncategorized

Friendship: that stands the test of time

LizbethLeave a comment

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.

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Nets/carcinoid Syndrome · Uncategorized

Making The Most………

Lizbeth4 Comments

Wow its been a while since my fingers have tapped out a post.  To say I haven’t jotted down anything would not be true.  However, everything I have written recently has been very personal and Im not quite ready to share these thoughts.

It’s the beginning of July the last post was published in March.  Quite a lot has gone on in my life in the last 4 months.  The puppies have all grown, and gone to new homes.  They have left a footprint on my heart – they were jolly hard work but oh so lovely to have.  We kept one from the litter.  A stunning young lady.  We named her Bess.  And yes she is turning out to be just we hoped; a great combination of mum, Bella and dad, buddy.   Bess is already taking note to sit and wait when nurse Evelyn is attending to me.  She is intrigued in all the help that a grown up Labrador parent can be.  

We had the honour of attending and celebrating Sophie’s first Holy Communion in May.  What a wonderful day that was.  Alexandra and Grace were ever so happy to get into their dresses and drive through to Glasgow.   What a day to remember.  So happy, full of laughter and love.  Quite a memory.

Sophie trying to beat Stuart’s time completing the rubix cube. 

Sophie with Alexandra and Grace at her Holy Communion Celebration.

I felt far from my best in the last few months.  Seen my consultant, dietician, several hospital visits.  My wonderful nurses come to the house and cater to my needs.  I’ve lost weight which is a bit of a bummer.   My gastrostomy tube snapped which was slightly annoying- lovely staff from the hospital came out straight away with a new part.  Now that’s what I call service.   There has been a fault with the batch – there has been a run on broken tubes 😂 

On the 10th of each month I get the chance to meet up with net cancer patients.  Through the charity The Ann Edgar Charitable Trust.  We have a great time blethering away, sharing stories.  10th June my sister hazel drove me to haddington to meet up with the others for a coffee on a Saturday afternoon.  July 10th Steve and I went in style on steves BMW motorcycle to the evening meeting.  The meetings help me a great deal.  They give an opportunity to talk, share experience and most important be YOU.   Looking forward to the next one.  

Nets/carcinoid Syndrome · Uncategorized

Lanreotide Injection with a special delivery

Lizbeth1 Comment

As usual the run up to my injection was met with even more trips to the bathroom.  Bowels  working in overdrive.  The day my nurse suggested I get incontinence pads delivered, I was a tad reserved, now I couldn’t do without them.  Before I started getting the jab every three weeks I had total uncontrollable running to the loo, more than ten times per day every day.  Now its greatly reduced.  On a really good day, its three times a day, the week before my injection is due I’m met with a rapid increase of visits to the little room.   This week as well as my usual company of my companion dog, Buddy.  We had Bella getting up with us too.  Bella is our 4 year old labrador retriever.  Who is heavily pregnant.  And lets just say the puppies were moving around in a way that she couldn’t hold the loo in for too long.  Poor girl.

The night before my injection Bella starts getting even more restless, comes to me and gives me a big hug, goes into her large birthing box bed and starts digging the bed to make it comfortable.  She is going to go into labour.  Boy its going to be a long night.  Bella starts to pant and shows all signs of first stage labour and then second stage.

At 0045am the first pup is born a little girl.  She is a perfect fox red labrador retriever.  Just like her daddy.  Bella is so good, bites through the sack, cleans the little one up and welcomes her into the world.  I give Bella a reassuring cuddle.  And make sure the little and Bella are ok.  They are.  I take a photograph of them,  I tell Steve first of course, and then send proud messages of the exciting first birth.  My friend Louise lives three miles from me and asks if she can come and observe Bella giving birth and be of any assistance to me.  She is there for the rest of the litter delivery.

 

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By 0725am there are 8 puppies born into the world.   Steve comes in to see Bella and is there for pup number 9 and 10.  Bella feeds the puppies and a big rest.  Despite being on cloud nine and so happy I’m shattered and feel like I can hardly put one foot in front of the  other. I get myself washed and dressed my nurse will be here this morning to check over my gastrostomy tube, change my dressing, and give me my lanreotide injection.

10am my nurse Evelyn walks through the door.  At first Bella barks, only until she realises who it is.   Evelyn pops her head into the room to view the pups, and then walks along the hall.  She scrubs up and then does all the needful for me.  As my faithful labrador retriever, Buddy, sits by my side and watches everything my nurse does.  I get ready for this painful deed to get done.   Tummy first I think she says.  The soiled dressing taken off, site all cleaned, helan cream and cavilon applied.  And then my nice new clean dressing put on, carefully with tape not to touch my skin and cause a reaction.  Evelyn  then picks up my lanreotide injection.  I get this every 21 days.  Its your left side this time she says as I slip down my knickers.  I then have to work out which way to lie so evelyn can inject my left buttock, I have enough problems with this at the best of times, put lack of sleep into the mixture and we have a recipe for disaster.  I was this way and that way on the sofa. Evelyn said, just a minute and listen to me and then lie down like I tell you,  it worked a treat.  As she administered the injection of lantreotide buddy sat a few feet away watching all, making sure all was good.  Which it was.  All done.    Everything put in the sharps box.  A good discussion between me and my nurse, as always.  Notes written.

 

 

 

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Steve calls my name along the hall.  I take myself along inviting my super nurse with me.  Bella is having a contraction, and as in previous seems to want me to work with her as a team.  I rub her tummy and reassure her that I am by her side.  Come on Bella, one big push for mummy, I say to her.  I can see her body contracting, the pain in her eyes.  My lovely dog looks so tired.  I can see a little tail appearing and a foot, one last push Baby belle.  And so she did.  Out comes the most beautiful little puppy.  Puppy number 11.  Bella is exhausted, I hold it while Bella bites the chord, cleans him vigorously, suddenly a little squeal comes from the puppy.  Bella wags her tail.  He is perfect and she is happy.   Puppy number 11 was born at 1118am.   What a team, you both make.  Evelyn says to me.  I feel very proud.  Bella gave birth to 8 boys and 3 girls.  I’m so pleased that things have gone well.  My dog is well, her puppies are healthy and of a good size.  Buddy, the daddy, watches on eagerly, I know he is desperate to play with the little fella’s.

My nurse managed to see the puppy being born, she got more than she bargained for on her home visits for this Thursday.   I certainly do not doubt that she has eventful days but I guess she doesn’t have puppies making an entrance into the world very often.

 

Nets/carcinoid Syndrome

Tea Party For Net Cancer Day

LizbethLeave a comment

On November 10th 2015 I missed an excellent information day at The Botanic Gardens in Edinburgh.  It was hosted by a small charity, many people will never have heard of – the Ann Edgar Charitable Trust.  This event was for Net Cancer Day.  The reason I wasn’t there; I was in hospital with sepsis.  My mobile phone let out a familiar tone.  I looked down at the screen, the notification said “a big cheer for Elizabeth……” this gave me the boost I needed and echoed what I already knew – that my chums from the support group were all there for me.  It was then I decided by hook or by crook next net cancer day I would be doing something very different.  Eight weeks in hospital, a few months of getting my life back on track.  And then plans began……

The Ann Edgar support meetings offer what I  would say is a pretty special service.  I’ve made new friends and genuinely feel a real benefit.  The charity has not only made me feel welcome but gives time and support to my husband Steve too.  The knock on effect reaches not only partners, but also children, parents, siblings, friends and work colleagues.  My sons, sister and friend have all been in contact with TAECT at some point.  The idea that anyone affected by nets can get support or information on a local level is wonderful.  For me it’s time to put something back in to say thank you.  I would like to raise awareness of TAECT and net cancer too.  What better time than net cancer day.  So one year on and a tea party in Pencaitland is organised to raise some awareness and funds.

Whilst my main aim was to do the majority of the organising, I wanted to involve others.  I enjoyed getting the help; it was great how it all came together.  Helping hands can in all sorts of ways and was much appreciated.

It was a lovely event to organise, folks came from near and far to taste the lovely home baking I have been tweeting about.  It gave me a warm feeling to see so many people walk through the doors.  The room was full of laughter and chatter with many smiling faces.  In the two hours we raised a fantastic £1289

Looking forward to the next fundraiser to get my teeth into.

 

Nets/carcinoid Syndrome · Tube Feeding

Dedication of my nurse & new dressings

Lizbeth3 Comments

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 · Tube Feeding · Uncategorized

30 Years On……..

Lizbeth2 Comments

Well it’s nearly 2am and I’m wide awake. It’s been a great day.  Today was our 30th wedding anniversary and we are in Boat of Garten, near Aviemore to celebrate.    I can hear two very familiar sounds.  The first is the whiring of my feed pump, the other -rumbling snoring; my hubby, Steve, this gasping pup pup sound coming methodically from him.  I wake up often at this time, giving me the opportunity to reflect on what’s going on in my life.  

I’ve had two lovely nights in Aberdeen with Steve.  We were staying in a lovely hotel, went to a great party to celebrate the 60th birthday of his cousin, Annette and the 30th birthday of her son Lee.  Great seeing the family and spending time with Steve’s aunt Margaret and her children.  Steve’s sister Julie, Nicole and jack are here too.  Lovely quality family time; had a super family meal and went back to cousin Jimmy and Teresa’s for a visit.  Steve and I had some time on own too, the drive through Aberdeen for me set of many childhood memories.  My aunt lived in Aberdeen and we visited often.  As we drove passed Duthie Park my heart leapt and I can remember it as if it was yesterday playing in the hot sun with my mum, granny Baird and auntie Nellie.  I yearn so to take my grandkids there, share my happiest times with them.  The time went so fast over the weekend.  After breakfast we popped in to see auntie Margaret.  She was telling us about manuka doctor honey.  And how it helps health conditions for some people.  She brought the jar through to show us, steve took a photo of it. We have since looked it up and we can purchase it at Holland & Barrett for £28.99 and get a second jar for 1penny.  We are going to give it a try.   For a lady of eighty years of age she is marvellous.  When I was there I had my backpack feed on.  She was open and asked me about it.  I wish there were more people would ask when they really want to know.  I really don’t mind answering the questions.  You tend to find its children and people over the age of 75 that ask.  
  

Our anniversary day was wonderful.  Drive from Aberdeen to boat of Garten was delightful. We drove passed the lecht ski centre, one of my old haunts.  For me so strange to see it covered in Heather rather than snow.  A warm welcome awaited us at our beautiful hotel, we have a garden room, so somewhere to sit out with a pot of tea 😘.  A huge six foot wide bed – could do with that at home.  We literally dropped our bags and drove into Aviemore.  We were booked on the strathspey steam railway for first class afternoon tea.  What a great journey we had.  Our own we private compartment, pot of tea, coffee, and lots of lovely food.  I thought this would be a great treat for Steve, since he is always running about after me, working so hard with his business and rarely gets time just to sit and watch the world go by.  And we both love the idea of the steam train.  An hour an a half of relaxation was wonderful.  I’m sure it did the two of us the world of good.  We had parked the car about a five minute walk from the train.  As we were walking back, I said to Steve I needed to go to the toilet.  We immediately saw a tesco – bingo, that will do,  I was bursting now, thank goodness I had an insurance policy on.  Steve put his hand gently on my shoulder you are too close to the edge of the road he said as a large lorry rumbled passed feeling like it was about to take of my nose.  At last the green man, we could cross.  Yes, they had customer toilets.  Thank,goodness.  Oh the relief. 
  

We came back to the hotel at 5pm for a rest before going downstairs for a wee while at dinner time.  I sat on the decking with a pot of tea, it was was a lovely day and at 5.10pm it was 19 degrees – in Scotland, nearing the end of August that’s pretty good.  Sitting watching the world go by, soaking in the atmosphere, beautiful.  Suddenly a wave washed over me and I could feel a chill to my bones.  The wee voice was saying watch you don’t get overtired now – you have done much more than you are used to.  The tummy started rumbling, get to the loo woman and deal with it.  I said to myself,  it’s your blasted anniversary.  So I did.  A beauty of a major explosion in the bathroom – the sweat running down my back with the pain.   Along with my teatime medication I took extra anti sickness pills.  I lay on the bed for twenty minutes with Steve.  Much better.  

We had a wonderful evening downstairs.  Gosh, not a late night for us though.  We went down at 6.30pm and we were back in our room  at 8.15pm.  Before we came to our room we walked round a beautiful community garden opposite the hotel. Lovely way to finish off the evening.    Back in our lovely room, we had time to relax and planning our Tuesday.    

We have to make sure we get plenty time to do my creams,  dressings, medications and my feed.  Two 500mls on the pump overnight, one or two 500mls during the day depending  and 4 bolus feeds during the day.   Steve is very  organised and methodical when it comes to my medication.  He sorts it all out first thing in the morning, puts it in little pots and transfers if medicine containers if we are going out. 

Looking forward to today.  We are meeting my sister hazel and brother in law alan.  Going up in fenicular railway.  

Nets/carcinoid Syndrome · Uncategorized

A Week In and I’m having a break

Lizbeth9 Comments

Its been an eventful week.  My phototherapy machine was ever so kindly delivered by the courier.  Brought down from the photobiology department in Ninewells Hospital, Dundee.  We get it set up in the end bedroom.  Carefully I put the folder with the paperwork on the desk thats in the room.  make sure I have everything, creams, lip protection, goggles for my eyes.    The machine has an engraved plate on the front:  Hope 18.  To me this instantly makes me feel that the machine has some sort of entity and I have it in my head that the machine is of the female gender.  For me it makes its easier when I’m setting up, getting myself changed,  typing in the keypad – the time to warm myself in front of the lights.

My treatment gets done in quarters, I’m a piece of meat; getting carefully timed under the grill and turned over precisely as the timer says.    The bright lights shine up the whole room, when the beeper makes the familiar noise I safely take off the protective goggles.  My eyes take a few seconds to adjust to normality.

The first treatment over.   We have a quiet evening.  Next morning,  I wake up do my usual routine, my skin is a little drier than usual, but nothing to write home about.

Treatment two is fine.

Treatment three, approximately six hours after my treatment I feel my skin very tight.  There is a distinct redness to my skin.  Ouch.  Plenty of cream.  12 hours later and the redness has subsided.  24 Hours later a patch has developed on my throat.  And I can tell you its sore.  Both inside and out.  Its red and angry.  Evelyn my nurse came to do my peg care and my octreotide treatment injection.  Boy, was I glad to see her.  When she walked in, she first asked about my throat.  I told her how things were going.  She thought the best thing was to phone the photobiology unit at the hospital and ask what to do.  In the meantime she did my peg care, octreotide injection and checked over my throat.

I phoned the photobiology unit.  As ever the staff were fantastic.  Gently talked me through everything. They asked me to send photos.  Its been decided I have to stay off treatment till this Monday.  Take another photograph and send it to them, we will then decide when to restart the treatment and what dose.  The hospital staff have been in touch with me, my nurse and my GP – all on that morning – I have had my hydrocortisone replacement therapy medication increased and been prescribed hydrocortisone cream to apply on the affected area.   I feel very warm, like I’ve been cooked from the inside out – microwave fashion.   If i was cooked inside out, can you imagine my parathyroid glands if my skin on my throat looks and feels like this.

Fingers crossed it heals quickly and I can get back to my treatment soon.

 

 

My Sore Throat After Phototherapy