Tag Archives: smileeachandeveryday.wordpress.com

I want to raise awareness of carcinoid syndrome, Nets, neuroendocrine Cancer.
The Ann Edgar Charitable Trust, scottish charity, is a great support to all affected by nets and carcinoid syndrome.

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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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.

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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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 ūüėė.

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 ūüíē. ¬† 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 ūüėÄūüėÄ ¬†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 ūüėāūüėā – for my sake just as well he loves me.

 

So happy to have a week in the sun ‚ėÄÔłŹ‚ėÄÔłŹ‚ėÄÔłŹ‚ėÄÔłŹūüėé

The dark scary winter behind us.  Several hospital admissions.  The bulbs poked their heads through the earth and produced some colour.  As Spring emerged  I hoped that my favourite season would be kinder to me than the winter was.  However, the hope of a better spring turned into disappointment.   The sunshine break Steve booked on January 1st was something both of us were yearning.  The thought of the warmer climate, the slow pace of life, friendly locals Рit was all felt very appealing.

The waiting was over.  Finally  the big tin bird was waiting on the Tarmac to transport us to our island in the sun.  I was nervous it was the first time flying since Lavita had became part of my life.

I was all very organised, letters from consultant, General Practioner,  and Community Dietician.  All explaining why I carry extra weight, have excess fluids, syringes, needles, scissors, dressings and lots of medication.

The airport was very busy, we all stood queued up, hand luggage in tow, passports in hand. ¬†A steady drum beat like sound echoed through my ears. ¬†The longer I waited the faster and louder the beat got. ¬†Although palpations are an everyday occurrence, the venue was somewhat different to what I’m used to. ¬†I ¬†was next up, as I struggled walking stick in one hand and hand luggage in the other. ¬†The airport staff quickly came to assistance. ¬†They exchanged my stick for one of theirs, just in case I filled mine with illicit drugs, and the burly gentleman lifted my bag onto the belt. ¬†I walked the walk. ¬† ¬†Steve and I were both cleared at the same time. ¬†All ready to board the plane.

The flight was grand.  Holiday was fantastic.  There were a couple of hairy moments like the time when I chanced having a handful of peanuts and one decided to try and expel itself out of my wound, a hair breadth from my gastrostomy tube.  As I was breathing it popping in and out, making a grand appearance.  I lay on the double bed, splayed my legs put my feet up on the wall, I got scissors and after several attempts gripped the end and pulled it out as it made its appearance Рgot it.  Oh yuk, all the granulation softened and started running down my tummy. My hair was soaking wet, legs shaking beads of sweat running down my brow.  Boy did I wish i was home.  I managed to clean myself up, getting a dressing on and rest up.  A few hours later I was feeling much better.

Steve and I made sure we had a relaxing holiday.  We did what we wanted when we wanted.  Steve hired a car and we travelled around the beautiful island soaking in the atmosphere.

Tranquility ūüėėūüėė

 


 

 

 

Introduction to nasogastric tube feeding at home

Into our sitting room walks the friendliest chatty lady.  Armed with a Hessian Tesco shopping bag, not filled with shopping, not bearing gifts of food parcels,   And no lovely sweets to munch.  Instead there were items that were unfamiliar to Steve and me.

Steve and I sat together on the sofa like a couple of school kids niavely watching in anticipation.  Gwen, the nurse specialist methodically explained the whole process.  She was very thorough and hands on.  Carefully telling us how to set up the pump, what tube to use, checking the ph level, flushing the feed tube.   After an hour or so of first time training Gwen left.  She gave us an abundance of literature to read through.  We both felt fairly confident in using the pump and setting up the feed.

Thursday morning came.  Steve and I arrived at the hospital early.  Time for a hot chocolate and malt loaf at the hospital cafe.  We toddled up to the ward.  Lovely nurse Stacey was waiting for us.  She took us to a designated room.  She came in with a loaded trolley. Amongst other things on it was the tube  and a cup of water with a straw.    I asked how I should sit on the large comfortable chair.  The nurse was very reassuring and said I was to sit in whatever way I wanted and she would work round me.  I got comfortable the nurse measured the length of the tube against me and then was instructed to rest my chin on my chest.

The procedure was just about to begin. ¬†She lubricated the tube and then inserted it into my right nostril. ¬†I’m not going to lie, I felt nervous. ¬†As the tube was pushed in I felt this pain up my nose. ¬†It was as if a bee had stung me. ¬†I remember saying oh that feels awful, rather sore up my nose. ¬†Simultaneously the nurse said we are in the back of your throat and ready for you to take a sip of water. ¬†As I drank from the straw the tube was fed down. ¬†I knew co-operating would make swallowing the tube much less painful and it would all get done a lot quicker. ¬† Voila – it had now entered my stomach. ¬†Carefully the nurse secured the tube to my face. ¬†A large plaster covering 90% of my nose and a transparent dressing on my right cheek. Now to check the placement – the nurse put the syringe on the end of the tube and started to draw some contents from my tummy. ¬†Nothing. ¬†Oh ! ¬†Of we went to X-ray to check where the tube had gone. ¬†Had to make sure it had gone into my stomach and not entered a lung. ¬† The guide wire had to be left in. ¬†This would give an accurate image on the X-ray. ¬†The great thing with modern technology is by the time we were back at the ward the doctor had seen the X-ray on the computer in the ward. ¬†Great news it was in the right place. ¬†Steve got me some orange juice, I drank it. ¬†Fingers crossed we would get some contents now to check the ph level. ¬†As the nurse drew up the syringe some of the orange juice I had just drank was now in it. ¬†Carefully she squirted some fluid onto one of the strips. ¬†Waited for it to change colour then compared it to the chart. ¬†Ph level 4. ¬†Perfect.

My dietician came to the ward to see us. ¬†We had a frank discussion. ¬†She explained all about building up my tube feed. ¬†Gave us lots of good literature, together with do’s and don’t’s. ¬†Also very useful telephone numbers just in case I need help.

I had a constant pressure in the back of my throat and my nose was really hurting by this time.  I was reassured this was all normal and would ease.  We left the hospital and headed home.

The next morning the district nurse arrived, basically to check in on me and give me support, change face dressing.  The plaster on my nose was stuck firmly.  With a bit of gentle tugging and pulling she got the plaster of and checked the measurement.  Good news the tube has not moved.

For the first few days I have to feed through the tube for 10 hours during the day. ¬†Gradually building up the speed of the pump, allowing me to get more feed each time. ¬†The feed is peptamen. ¬†It’s partly digested and appears to be the best formula for my tummy.

Four days later and all is going better than I hoped.  My body is tolerating the formula.  I can confidently set up and use the pump, draw fluid from my tummy and check ph level, and can flush my tube.

My nose is still uncomfortable and my throat is now much less sore than it was even yesterday. ¬† It wasn’t the easiest procedure I’ve had. ¬† However a combination of keeping calm, a good clinician and having my hubby was my biggest asset.