Nets/carcinoid Syndrome · Uncategorized

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.

 

 

 

Netty-in-Kilt

 

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

 

 

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5 thoughts on “Its The 10th of The Month Woo Hoo !!

  1. Oh, Lizbeth, I’m so happy to see you blogging again! I have been worried about you. In fact, I checked your blog again last night to see if I had missed anything. I’m so sorry for the struggles you’ve been facing, particularly with Steve’s eye, but ever so thankful for the support that you have through your fellow “netters”!

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      1. Thankfully, I am doing well. I have another treatment coming up on May 23 and scans the following day to determine whether or not there’s been any change.

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  2. So sorry to miss last nights meeting
    We are up staying near Drmnadrochit for a week with extended family from down south and Belgium – 15 of us!
    Having a ball!
    Hope to see you at Information day. M x

    Liked by 1 person

    1. The meeting was good Margaret. It was so lovely to see everyone. I totally noticed you not there – missed our usual ‘wee chat’ so pleased to hear you are having a fabulous time. Enjoy the rest of your break. Look forward to seeing you at the information day. Promises to be a super event. Love Elizabeth xx

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