Nets/carcinoid Syndrome · Uncategorized

Making The Most………

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 ūüėā 

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.  

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Nets/carcinoid Syndrome · Uncategorized

Lanreotide Injection with a special delivery

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.

 

Emotions · Nets/carcinoid Syndrome · Uncategorized

My Shining Lights when the going gets tough!!

For most of us life is hard enough. ¬†We all run along in the treadmill of life in our own way. Me, I try and make the best of it even on the bleakest day. ¬†The last three weeks have been a struggle. ¬†My father is in hospital, he has had life saving open heart surgery, his surgery was fairly extensive; a triple bypass, a valve replacement and a pacemaker. ¬†He has been in intensive care, moved onto high dependency and now graduated to the specialist cardiology ward. ¬†He still has a long hard journey ahead of him. ¬†My Papa is made of strong stuff, he will fight all the way. ¬† I am finding it hard, seeing him lie in the hospital bed looking so frail and lost when I am so used to seeing him going around the family home like a busy bee. ¬†To let you understand my Dad is not one for sitting down, as you would say he has a ‘glass ass’. ¬†He likes to keep busy, making sure everyone is looked after when they visit him. ¬†There is always coffee and a sandwich on offer.

Ive been feeling a tad worse than usual over the last few weeks too. ¬†On the medics advice Ive increased my steroids. ¬†Whats keeping me going and giving me strength? ¬†Love. ¬†From particular special individuals: my hubby Steve, my sons Tony & Stuart and my granddaughters Alexandra & Grace. ¬† They are my shining light, all of them fill my heart with warmth and love. ¬† They light up my life even on the darkest days. ¬†And make me smile –¬†Always. ¬†I love them so much and am so grateful to have them in my life.

 

 

 

Nets/carcinoid Syndrome · Tube Feeding · Uncategorized

A wee bit of home assessment from my nurse

One thing and another its been a busy week.¬† Started with a visit to the GP on Monday, she is perturbed that despite I’m on my new super duper feeding regime through Lavita, my gastrostomy feed that Marion from the CENT team has carefully worked out for me and I am getting food pumped into me 20 hours per day, I still have an underweight BMI and haven’t gained an ounce.¬†¬† I’ve got that bloody awful feeling that I need a kick up the ass, I could lie on the floor and curl up in a ball and sleep.¬† The Doc was also very concerned with the fact that I have difficulty with once of the most important things – getting washed.¬† Our shower is over the bath, between my poor co-ordination, spontaneous hy0pogleamia, the pain I get and my gastrostomy tube climbing over the bath has caused¬†many accidents: resulting in severe bruising and a hurt pride.¬† Long and short of my GP visit: bloods taken, my steroid replacements have been increased for the time being, I have to visit her again soon.¬† We need to get the bathroom sorted.

Its lanreotide week and boy do I know it.  The bowels are flowing more than normal and for the third time the urgency at 3am disturbs my poor sleeping hubby.  Buddy sits quietly at my feet, replacing the lovely warm slippers that I had no time to put on.

 

 

 

Evelyn, one of the nurses comes in on Thursday morning.¬† The dogs are happy to see her.¬† They know the routine and watch all that is going on.¬† She looks at the two of them and says well you will have a wee wait on your ‘doggy mars bar’ today.¬† Got a lot to get through with your¬†Mummy.¬† Gastrostomy¬†¬†site tackled first.¬† Dressing taken off, all cleaned, the necessary done, new dressing on.¬† Skin checked and other issues addressed.¬† Then onto my lovely injection of lanreotide.¬† It may be a big pain in the butt and cost the NHS a small fortune but it a godsend to me.¬† My diahrea has reduced from over ten times a day to 3.¬† And those awful flushes have greatly reduced.¬† The run up to the injection the symptoms get more problematic but nothing like before I started getting it.¬† I really wish it had a magic formula and helped with the malabsorption. ¬†Injection in, all sharps in appropriate box etc.

Evelyn takes a pew. ¬†Pulls out a white folder and talks to Steve and I. ¬†Remember last week I asked you some questions and you did well,¬†she said. ¬†That was a base line for us for your mental awareness. ¬†Steve made an off the cuff funny remark and we laughed. ¬†Yes you can¬†only go downhill she said. ¬† No onto some physical questions. ¬†It was all very thorough. ¬†Asking me questions such as can I roll over in bed. ¬†Do I need help with washing and showering. ¬†A great deal of emphasis on my meds, eating, all the personal issues such as my bowel habits, aids I need and use, what I can manage and what I CAN’T. ¬†As always Evelyn was super efficient; making me feel so comfortable and at ease and still managing to get all the appropriate essential information that has to get detailed down. ¬† ¬†The nurse is an angel she goes above the call of duty.

It was good Steve was here for all the discussion. ¬†Evelyn already knows how much I rely on him and how difficult things are such as showering, setting up feeds, getting my medication organised – we didn’t need to go into the nitty gritty.

The outcome; I’m an at risk patient. ¬†BMI far too low. ¬†At risk of falls. ¬†Has pain. ¬†Risk of infection. ¬†I dolly daydream into a daze, I furniture walk without realising it. ¬†The one thing I certainly cannot do is get up of the floor on my own. Give me a piece of furniture or better still my devoted strong man – Steve. ¬† I love this man ūüíēūüíē

Nets/carcinoid Syndrome

Tea Party For Net Cancer Day

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.

 

Emotions · Nets/carcinoid Syndrome

First Steps To Writing A Care Plan

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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 ūüôā ¬† 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.