Nets/carcinoid Syndrome · Uncategorized

Making The Most………

Wow its been a while since my fingers have tapped out a post.  To say I haven’t jotted down anything would not be true.  However, everything I have written recently has been very personal and Im not quite ready to share these thoughts.

It’s the beginning of July the last post was published in March.  Quite a lot has gone on in my life in the last 4 months.  The puppies have all grown, and gone to new homes.  They have left a footprint on my heart – they were jolly hard work but oh so lovely to have.  We kept one from the litter.  A stunning young lady.  We named her Bess.  And yes she is turning out to be just we hoped; a great combination of mum, Bella and dad, buddy.   Bess is already taking note to sit and wait when nurse Evelyn is attending to me.  She is intrigued in all the help that a grown up Labrador parent can be.  

We had the honour of attending and celebrating Sophie’s first Holy Communion in May.  What a wonderful day that was.  Alexandra and Grace were ever so happy to get into their dresses and drive through to Glasgow.   What a day to remember.  So happy, full of laughter and love.  Quite a memory.

Sophie trying to beat Stuart’s time completing the rubix cube. 

Sophie with Alexandra and Grace at her Holy Communion Celebration.

I felt far from my best in the last few months.  Seen my consultant, dietician, several hospital visits.  My wonderful nurses come to the house and cater to my needs.  I’ve lost weight which is a bit of a bummer.   My gastrostomy tube snapped which was slightly annoying- lovely staff from the hospital came out straight away with a new part.  Now that’s what I call service.   There has been a fault with the batch – there has been a run on broken tubes ūüėā 

On the 10th of each month I get the chance to meet up with net cancer patients.  Through the charity The Ann Edgar Charitable Trust.  We have a great time blethering away, sharing stories.  10th June my sister hazel drove me to haddington to meet up with the others for a coffee on a Saturday afternoon.  July 10th Steve and I went in style on steves BMW motorcycle to the evening meeting.  The meetings help me a great deal.  They give an opportunity to talk, share experience and most important be YOU.   Looking forward to the next one.  

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Nets/carcinoid Syndrome · Uncategorized

Lanreotide Injection with a special delivery

As usual the run up to my injection was met with even more trips to the bathroom. ¬†Bowels ¬†working in overdrive. ¬†The day my nurse suggested I get incontinence pads delivered, I was a tad reserved, now I couldn’t do without them. ¬†Before I started getting the jab every three weeks I had total uncontrollable running to the loo, more than ten times per day every day. ¬†Now its greatly reduced. ¬†On a really good day, its three times a day, the week before my injection is due I’m met with a rapid increase of visits to the little room. ¬† This week as well as my usual company of my companion dog, Buddy. ¬†We had Bella getting up with us too. ¬†Bella is our 4 year old labrador retriever. ¬†Who is heavily pregnant. ¬†And lets just say the puppies were moving around in a way that she couldn’t hold the loo in for too long. ¬†Poor girl.

The night before my injection Bella starts getting even more restless, comes to me and gives me a big hug, goes into her large birthing box bed and starts digging the bed to make it comfortable.  She is going to go into labour.  Boy its going to be a long night.  Bella starts to pant and shows all signs of first stage labour and then second stage.

At 0045am the first pup is born a little girl.  She is a perfect fox red labrador retriever.  Just like her daddy.  Bella is so good, bites through the sack, cleans the little one up and welcomes her into the world.  I give Bella a reassuring cuddle.  And make sure the little and Bella are ok.  They are.  I take a photograph of them,  I tell Steve first of course, and then send proud messages of the exciting first birth.  My friend Louise lives three miles from me and asks if she can come and observe Bella giving birth and be of any assistance to me.  She is there for the rest of the litter delivery.

 

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By 0725am there are 8 puppies born into the world. ¬† Steve comes in to see Bella and is there for pup number 9 and 10. ¬†Bella feeds the puppies and a big rest. ¬†Despite being on cloud nine and so happy I’m shattered and feel like I can hardly put one foot in front of the ¬†other. I get myself washed and dressed my nurse will be here this morning to check over my gastrostomy tube, change my dressing, and give me my lanreotide injection.

10am my nurse Evelyn walks through the door.  At first Bella barks, only until she realises who it is.   Evelyn pops her head into the room to view the pups, and then walks along the hall.  She scrubs up and then does all the needful for me.  As my faithful labrador retriever, Buddy, sits by my side and watches everything my nurse does.  I get ready for this painful deed to get done.   Tummy first I think she says.  The soiled dressing taken off, site all cleaned, helan cream and cavilon applied.  And then my nice new clean dressing put on, carefully with tape not to touch my skin and cause a reaction.  Evelyn  then picks up my lanreotide injection.  I get this every 21 days.  Its your left side this time she says as I slip down my knickers.  I then have to work out which way to lie so evelyn can inject my left buttock, I have enough problems with this at the best of times, put lack of sleep into the mixture and we have a recipe for disaster.  I was this way and that way on the sofa. Evelyn said, just a minute and listen to me and then lie down like I tell you,  it worked a treat.  As she administered the injection of lantreotide buddy sat a few feet away watching all, making sure all was good.  Which it was.  All done.    Everything put in the sharps box.  A good discussion between me and my nurse, as always.  Notes written.

 

 

 

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Steve calls my name along the hall. ¬†I take myself along inviting my super nurse with me. ¬†Bella is having a contraction, and as in previous seems to want me to work with her as a team. ¬†I rub her tummy and reassure her that I am by her side. ¬†Come on Bella, one big push for mummy,¬†I say to her. ¬†I can see her body contracting, the pain in her eyes. ¬†My lovely dog looks so tired. ¬†I can see a little tail appearing and a foot,¬†one last push Baby belle. ¬†And so she did. ¬†Out comes the most beautiful little puppy. ¬†Puppy number 11. ¬†Bella is exhausted, I hold it while Bella bites the chord, cleans him vigorously, suddenly a little squeal comes from the puppy. ¬†Bella wags her tail. ¬†He is perfect and she is happy. ¬† Puppy number 11 was born at 1118am. ¬† What a team, you both make. ¬†Evelyn says to me. ¬†I feel very proud. ¬†Bella gave birth to 8 boys and 3 girls. ¬†I’m so pleased that things have gone well. ¬†My dog is well, her puppies are healthy and of a good size. ¬†Buddy, the daddy, watches on eagerly, I know he is desperate to play with the little fella’s.

My nurse managed to see the puppy being born, she got more than she bargained for on her home visits for this Thursday. ¬† I certainly do not doubt that she has eventful days but I guess she doesn’t have puppies making an entrance into the world very often.

 

Emotions · Nets/carcinoid Syndrome · Uncategorized

My Shining Lights when the going gets tough!!

For most of us life is hard enough. ¬†We all run along in the treadmill of life in our own way. Me, I try and make the best of it even on the bleakest day. ¬†The last three weeks have been a struggle. ¬†My father is in hospital, he has had life saving open heart surgery, his surgery was fairly extensive; a triple bypass, a valve replacement and a pacemaker. ¬†He has been in intensive care, moved onto high dependency and now graduated to the specialist cardiology ward. ¬†He still has a long hard journey ahead of him. ¬†My Papa is made of strong stuff, he will fight all the way. ¬† I am finding it hard, seeing him lie in the hospital bed looking so frail and lost when I am so used to seeing him going around the family home like a busy bee. ¬†To let you understand my Dad is not one for sitting down, as you would say he has a ‘glass ass’. ¬†He likes to keep busy, making sure everyone is looked after when they visit him. ¬†There is always coffee and a sandwich on offer.

Ive been feeling a tad worse than usual over the last few weeks too. ¬†On the medics advice Ive increased my steroids. ¬†Whats keeping me going and giving me strength? ¬†Love. ¬†From particular special individuals: my hubby Steve, my sons Tony & Stuart and my granddaughters Alexandra & Grace. ¬† They are my shining light, all of them fill my heart with warmth and love. ¬† They light up my life even on the darkest days. ¬†And make me smile –¬†Always. ¬†I love them so much and am so grateful to have them in my life.

 

 

 

Nets/carcinoid Syndrome · Tube Feeding · Uncategorized

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 ūüíēūüíē

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.  

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

 

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Nets/carcinoid Syndrome · Uncategorized

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