Nets/carcinoid Syndrome · Tube Feeding · Uncategorized

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 ūüėė.  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.  

Advertisements
Nets/carcinoid Syndrome · Uncategorized

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

 

.