Nets/carcinoid Syndrome

Where Did The Month Go?

Already its the 26th of January.  Not many days left and it will be February.  For me January has mixed emotions.  The 24th of the month is my beloved Mother’s birthday.  She passed away in the August – the first birthday she wasn’t here for was her 80th.  She was so looking forward to turning 80.  My Mum loved life to the full and all of us that surrounded her.  There is not a day that doesn’t go by that I don’t think about her.  We share many conversations about Mum and many a time we talk as if she is in the next room and is going to walk in at any time.  I guess I wish this to be true.

I have had Steve for company a few extra days this month.  I’ve had a visit from my friend Louise, visit from Jennifer & Scott.  Hazel has been down a couple of times.  Both our sons, Tony and Stuart have visited and stayed for dinner.  These visitors keep my spirits up, and turn my frown upside down, make me laugh and share stories.  The clock hands appear to move even faster than normal when visitors come to Nisbet

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Steve has taken me to visit my Dad on a few occasions this month.  A couple of times I’ve seen my brother Brian and his wife Margaret at Dads.  I’ve also met up with my brother Albert and niece Chiara and my sister Helen &  nephew Brandon, and on the last visit to see my Dad I saw Lindsay, Stephen, Sophie, Louis & Patrick.

We have managed a couple of social outings – entertained by The Domestics at The Dalriada in Edinburgh and met up with Susan and Ian from Dumfies and Galloway for a couple of hours.  We also met up with folks affected with NETS.  The Ann Edgar Charitable Trust is a Scottish Charity – it offers NET Natter Meetings once a month – which has became fairly popular.  The meeting on 10th January was busy and a few members were keen on the idea of helping out at a craft fair, raising awareness of NETS and carcinoid syndrome and funds for the charity.  One of the members, Barbara,  brought along a peg doll she made, we have since called her Ziggy Zebra.  This inspired me to make a zebra fabric memory board.

I haven’t been feeling too grand the blasted peg is still leaking, and when I say leaking it’s a tad more than a dripping tap that’s for sure.  It started to get bad nearly two weeks ago and get really painful again, my tummy is swollen like a football and the discharge a putrid offensive smell, resembling our septic tank.  My nurse took one look at it and said get the doctor to look at this young lady.  The GP saw me that day.  She took a swab of the discharge and blood tests.  It was a Friday – I felt awful.  I had a quiet weekend at home.  Monday morning at approximately 1130am the telephone rang, it was the GP, I have had the lab on the phone.  She said.  Both your swab and blood tests have shown you have an infection.  I will write you a prescription for antibiotics and get it to the chemist for you for today.  We had a discussion on the phone how I was feeling, etc.

One week later and the discharge is not any better.  Infact I will go so far to say it looks worse and the pain at times is far more than sore or uncomfortable its aching and sometimes almost unbearable 😦  My nurse is in regularly to change my dressings and see how I am.  How long the nurse is in to see me varies.  It depends how I am both physically and mentally.  All the nurses are always very thorough and look after you very well.  On some days the nurse gives you the lift you need.  This particular day she advised me to go back to the GP. Back down to the surgery for another appointment.  Doctor agrees it looks worse that the last time she saw it.  She thinks the best plan of action is another week of antibiotics in the hope it will lift the infection.  Fingers crossed it does.  If there is still smelly discharge once the antibiotics are finished – go down to the surgery and get it swabbed.  I started the second week on Tuesday, today is Friday – I have had 2 of 4 doses today.  No difference yet.  Really hope it clears up over the weekend.

It was lanreotide week second week of January so on one of my nurse visits she gave me my lanreotide injection.    This helps stop me shitting myself and cuts down the flushing on my face and neck.  My next injection is due this coming Wednesday and the nurse I like doing the injection best is off on annual leave.  I know I will be in very capable hands – but I cant help wondering who I will get.  I can see it now –  On that day –  my treatment injection will be laid out ready for the nurse to administer.  Bella will hear the car, think she knows who it is, wag her tail, run to the door, when she sees its someone else, she will run with her tail between her legs up the hall and onto my bed….

Despite this nasty recurrent infection its not all doom and gloom for the first month of 2016.  Steve and I have booked a week in Ibiza in June,  when my community dietican was here at the house for my 4 weekly home visit a few days ago we discussed how she can help with giving me a letter for the airline/travel company explaining the need for my pump, syringes, feed, etc.  I will also get it translated into Spanish. She is easy to get on with, very friendly and makes me laugh.

We also have Lindsay and Stephens wedding to look forward to.  This is a festival wedding – it is in June.  The week after we come back from Ibiza.

Steve and I will both will be celebrating our 50th birthdays:  Steve in June, Me in August.   We are having a party for Steve.  I like to go to a party  -just don’t like to have a party for me.  Its our 30th wedding anniversary in August.

Before all these wonderful things in the summer.  I’ve got to rid this infection, hopefully the hole will close up round the peg site.  I would love to get some more energy if possible.  I have a hospital admission in March in Ninewells, Dundee for 5 days for my photosensitivity.  Dundee is the only hospital in Scotland with a photobiology unit.  I am also scheduled to see Professor Martyn Caplin at The Neuroendocrine Tumour Clinic at The Royal Free Hospital, London. in April.

This week coming is busy enough: nurse coming in to do my dressings on Monday, Wednesday nurse is coming do my dressings and administer my lantreotide injection.  Steve has the eye pavilion hospital for a check up after his retina eye surgery.  Thursday – I have an appointment with my endocrinologist, Professor Mark Strachan.  Think I will have a rest on Friday.

Its been a mixed month.   At times I have been feeling really rotten and no matter where I have been I could lie down on the floor and lie in the foetal position.  There is nothing too much I can do about how I feel physically.  All I can do is take it easy, rest up when my body tell me to.  Mentally I try and keep myself upbeat and on top of things.  What’s the best remedy if you feel low mentally?? For Me  Keeping busy helps.  Going to Nets Scotland AECT Net Natter Meeting and talking to others. Having a warm bath. My biggest love of all – taking photographs.  Writing.  Baking.  I’m very fortunate, I find it easy enough to talk and say how I feel.  Its natural for everyone to feel like the weight of the world is on their shoulders at some time,  its how we deal with that weight that matters.

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Nets/carcinoid Syndrome

First Net Natter of 2016

Its a very wet Sunday in January.  The rain is battering against the window of our cottage as I rattle my fingers on the keyboard.  Nothing is going to dampen my mood today.  My devoted Labrador has his paw gently resting on my foot.  His gentle snore is almost in time with my feed pump whirring away as it installs nourishment into my belly.

In a couple of hours I’m going to leave the cosy sitting room and brave the weather.  Why?  To meet up with fellow patients and their friends and family.  This time one of the patient’s are kindly giving up their ‘front room’ for us all to have a blether and a cuppa.  What’s this known as – Net Natter.  We get together through the Scottish Charity The Ann Edgar Charitable Trust.

Netty-in-Kilt

Nets/carcinoid Syndrome

Healthcare Company seeks CS Patients

Well we are 7 days into the year and I am feeling fairly positive.  We have had a trip to the ballet, booked a foreign holiday, we have a lovely wedding to look forward to.  Both Steve and I will be celebrating our 50th birthdays and our 30th wedding anniversary.  We will have our usual trips down to London for my hospital appointments: hopefully take in a show while we are there.  Yes a lot to keep well for.

My nurse was in today to clean my peg site and do my dressings.  We have come to the conclusion that we have almost cracked the timing of the feeding regime.  I’ve got my pump speed up to 150mls per hour and go through 2 litres of Peptamen in 24 hours, and bolus my other feed at 200mls per time.  Finally managing to get some oral consumption.  Not a lot, but something.  Getting the calories in is the main issue.  On top of the diarrhea and flushing symptoms I have with my carcinoid syndrome the drop in blood sugar levels and the malabsorption cause havoc. Hence the need for consuming so many calories.

Today has been a typical day, nurse in, hubby doing lots of chores, feed on, etc.  I’ve had some quality time to myself, got some writing done and some surfing on the net.

Whilst I was on the net I had a wee peak on Facebook, on the NetScotland page there was a posting that was of interest.  A particular healthcare company are looking for patients with carcinoid syndrome to interview.  Ideally interviews to take place by end of January 2016.  If you are interested in reading about this please click on the link below:

http://www.netpatientfoundation.org/2016/01/healthcare-company-looking-for-5-patients-to-be-interviewed/

I’m sure patient input will go a long way into assisting the education at the 13th annual ENETS annual conference.

zebraballet

 

 

Emotions

Emotions 😀😁😂☺️😘😈

Im so happy to be home.  I feel free from the clinical walls of the ward.  When I walked into our home on the Friday evening I really hoped to myself this would be it, I would be home now till out patient appointments.  Certainly no more in stay hospital visits for a while.  I missed my home life. Since October my abode was a hospital address – it felt like a lot longer and I am feeling like things in my life are slipping me by.  Life is hard enough for everyone.  When you have a chronic illness you learn to live your life as a different ‘normal’ but when you have a chronic illness and something else is thrown into the mix – such as I was in hospital for all those weeks, or worse still when I also was so ill with the damn infection I didn’t know what day of the week it was.  Life gets even more difficult and complicated.
As human beings we all have difficulties to deal with in everyday life,  and it’s all difficult in its own way.  And sometimes one problem can lead to another.   Steve and I had our sons in our early twenties,  we had to be careful with money when they were toddlers, however, we did our best and they always knew they were loved.  We learnt a lot from that period in our life.   Some people have relationship problems.  Others it’s their job.   I personally believe the biggest stress on a person, relationship or a family is illness.  It can put a terrible emotional stress on anyone at a moments notice.  It can cause such upset and anxiety.  Anger.  Financial stress.  The worst feeling in the world can creep up on you: loneliness.  

 

Who gets lonely when sickness strikes?  Whether I’m at home or in hospital I have people around me – it’s still possible to feel on your own when you are surrounded by others.  At times you just feel no one understands how you are feeling or what this damn disease does to you.  I may be talking to someone and they hear my voice but are they actually listening to what I’m saying.    Whilst I was in the hospital I missed my home and my family terribly .  Although everyone in the hospital is in the same boat –  at times you can feel rather isolated and alone.   For my hubby loneliness came in the form of actually physically being on his own.  The duration of my hospital stay.  Steve was at home on his own with the two Labradors.  His routine was taking care of himself, the dogs, the business, and running back and forth to the hospital to see me.  He never felt he had enough hours in the day.  He never once complained about being tired but you only had to glance at him to see he was exhausted.   As he walked into the ward in a sluggish manner rather than his long confident strides, he had dark circles under his blood shot eyes. And as we discussed our day’s events he yawned several times through the conversation; quite unlike Steve, who is always usually full of beans and ready to take the lead.  After visiting at 8pm Steve would leave the hospital with my washing and head for home.  There would be plenty to keep him occupied.  Something on TV, house chores, the dogs, paperwork, returning the answer machine messages.  Steve would text me as soon as he got home,  quite often we would send each other several messages back and forth and chat as if we were in the same room,  one evening Steve video called me whilst I was in the hospital , it was great whilst I was in my hospital bed  I was also in my front room. Watching my dogs reaction as they heard me call their names was fantastic.  Steve and I are used to doing most things together.  So the reality of it is when Steve came home from the visiting he did all the necessary – but longed for it not to be needed.  And me to be home.  He said the old cottage was quiet and empty,  and despite him having so much to do he was bored.  Steve sent me a text one evening and in part of the contents was the words  the house is lonely, cold and quiet without you……..I miss you.   These words helped me get better quicker.  They made me feel wanted and I knew exactly how he was feeling.

The knock on effect of illness is huge –

well meaning people get in touch to ask how everything is.  Which is lovely, however, sometimes the added pressure of calls and texts can take its toll, other times they are just what you need.

Financially:  I could go on forever – extra trips to hospitals, parking, fuel, Washing, time of work – or no work at all.  Need I go on.

Upset and anxiety.  There are days you just want to cry, everything and anything you feel or say is wrong  for that moment.  That day you can’t  put your foot over the doorstep.

Anger.  😁

 


I feel I’ve been fortunate I’ve never been too angry.  Always tried to turn a negative into a positive.   And thankfully anxiety is not something that has got a hold of me.  I take every day as it comes and what comes with it.   I have learned to treasure what I have in life.  Be grateful for all the good things I do have, and believe me there are many good and happy events surrounding me.   Sure I can’t do everything I used to be able to do.  And certainly I don’t move around as quick as I once did.  I have adjusted my lifestyle accordingly.  What we used to do in a day perhaps takes us a week.  The outing, the trip to the shops and the visit to friends was once done in one day now I have to do things in stages and they will be spread over three days with a day or two in between for a rest day.    My pace of life has altered accordingly  – slowed down considerably.  Steve and I have wonderful Sunday afternoons together. And evenings by the fire chatting.  We take time for each other and converse.  And it’s wonderful, I love it.  ❤️❤️.   We perhaps now see things, do activities and sit and talk like we would never have imagined.  So while it can be lonely and stressful there are still many plus points.   For me I can honestly say that after all these years my hubby and I still really do love each other.  We have two sons, we love very much and we are grandparents .  My thoughts – life is for living and enjoying.  Sure it can be hard.  But isn’t it difficult for everybody at sometime.  I believe if something is worth having it is worth fighting for – such is life.