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.






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



Taking care of each other: as always

Wednesday:  8am the day after we arrived home from the wedding down south Steve was on the phone to the doctor surgery to get an appointment.  His eye was still troublesome.  He described the vision out of one of his eyes like looking through a very dirty window.  He said it was murky.  Good – he had a consultation for that day.  He saw the new young gp at our practice.  He looked at Steve’s eye, asked all the appropriate questions.  Told him he couldn’t see anything in his eye, gave him a prescription for antibiotic drops and advised Steve it would be a good idea to go along to the optician and get them to have a wee look – no real urgency, but don’t leave it too long.  Steve came home phoned the optician, spoke to their receptionist, told them what had been going on, she gave him an appointment for an eye examination the following afternoon.

Thursday:  both Steve and I woke up tired.  We did our usual routine.  My feed pump/flush, skin care, meds.  Steve did his eye drops, meds.  Breakfast.  Dogs.  Nurses came in for my dressings, dealt with my NG tube.  Despite not feeling like it Steve went out to work for a few hours – lifting the heavy ride on lawn mower into the van, cutting grass, hedges, weeding.   At 3.30pm Steve went the optician.  She didn’t have very good news for Steve,  two thirds of his retina was detached.  She recommended he did not drive, keep his head as still as possible and go straight to the eye hospital in Edinburgh.  Steve being Steve, said he couldn’t leave his work van in the car park so he drove home first.  Got changed out his work clothes then we headed to the hospital.  The drive into Edinburgh was tense.  Steve looked pale.  Both of us were scared of the unknown.  We chatted on the journey, shared our fears.  We thought we would have to wait in the emergency department.  NO.  We were sent straight to the ward on the second floor.  The nurse led us to a consultant waiting for our arrival.  He fully examined Steve and then explained to us what was going to happen.  He leant over a picked up a large model eye and talked it through in detail the operation Steve needed urgently.  Steve looked at the doctor and said I only have two questions:  will it get better on its own?  When the doctor said no, quite literally this operation was to save Steve’s sight.  Steve said well question number two isn’t really a question its a request.  The operation – will I get put to sleep. I would really appreciate a general anaesthetic.  The doctor explained for this type of surgery the eye needs to be as still as possible so a general anaesthetic is advised.    Another doctor came in to speak to Steve and have a look at his eye.  Whilst he was the other doctor and I had a good chat.  He said he appreciated how ‘nervy’ it is getting treatment/operations on the eye.  Particularly of this scale.  I said to him, my Steve is no cry baby – he has been through cancer twice, had three gruelling weeks of radiotherapy and all through that he coped remarkably well.

Friday:   for me – up very early; made the decision to have half an overnight feed, get up at 5.30am, bath, skin ritual, etc. all in preparation for going to the hospital to be with Steve before his operation.  At the hospital, we spent a quality hour before the nurse whisked Steve away and it was time for me to go back home.   The nurse handed me a piece of paper with the direct line phone number to the ward – I took it from her and held it as if it was a piece of priceless China that would smash if I dropped it.  I placed it into my jacket pocket and guarded it with my life.  The nurse assured me he was in very capable hands and I could telephone anytime.  The drive home was very lonely without my soulmate.  Not to mention the car was very quiet, if you think I can talk – well steve can fair blether too. I arrived home, got into my pjs, linked up to my feed pump , put on a movie and snuggled in with our Labradors.  Steve and I text each other back and forth before his surgery.  He wanted to know I was home safe and was all linked up to my feed ok, I wanted to know how his pre med was going – we exchanged texts until I got a text from Steve at 10.20am to say that was him heading to theatre.

12 noon my feed finished.  The dogs were as unsettled as me.  Clock watching certainly does make the day go slower.   Nearly 1pm – I phone the ward – Steve is back from theatre – everything has gone to plan.  I want to go see Steve for the afternoon visiting – first thing I need to do is make sure I eat plenty.   The last thing I wanted was my blood sugar dipping.  I got two ensure drinks down me and a fortisip compact before having a bowl of cereal.   I packed some extra t shirts and shorts for Steve and put in the bag sweets and his favourite oasis juice.    When I arrived at the ward Steve was snoozing.  His operated eye had a patch on.  As I approached the bed he opened his eyes.  I know the footsteps he said.  We were both as pleased as each other to see one another.  Steve was in a lot of pain and would be for quite some time.  I didn’t stay too long the first visit in the Friday, went back in the evening  for a couple of hours.

Then I went home . Had something to eat.  Smothered my body in three layers of Cream for my skin.  Took my Meds.   Then the usual pump feed ritual; hooked up for ten hours of continuous feeding.  I didn’t want to sleep in our bed on my own, so I camped on the sofa with the dogs and TV for company and comfort.   I missed my cuddly hubby.

Saturday:  rather than getting woken by my Feed pump beeping, I awoke to the familiar noise of my iPhone getting a text.  It was from Steve, letting me know what kind if night he had and asking how I slept and asking how I was feeling.  Steve was getting home later that day – best news ever.  Big downside.  He is going to need three more further operations.  For the immediate future we are taking life gently and a day at a time.

As soon as we are able we are going onto the Hotels Combined site below and booking ourselves a relaxing couple of days away.  Somewhere not too far from home – a pamper day or two sounds fabulous.   Click on the image below if you want to see great prices for hotels UK and worldwide.


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