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 💕💕

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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.

 

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.

 

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.

30 Years On……..

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.  

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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A Week In and I’m having a break

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

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