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

Advertisements

Dying To Look Good

You look great –  that’s the words we all long to hear.  We all want to look our best.  Whether we are nipping to the supermarket, having a lazy day,  or going out for dinner.  The last thing I want is folk to be surprised that I look normal”

So why is it that there are times when people say certain phrases to me that can set my tummy into turmoil and make me feel guilty for having an illness.  These words are usually said in such an innocent manner and no malice is ever meant.   Sometimes I can get upset by what has been said to me, regardless of how harmless the conversation is.  The person paying the compliment is usually always blameless.

The conversations and body language that are directed to me are intended to be kind and gentle.  A gentle hand stroking my arm and the words that first come out how are you keeping?    One of the ladies in our support network group particularly doesn’t like this phrase.  I have spoken to many people whilst I have been in hospital and yes they are affected by what’s said too.  Certain words affect folks more than others, the word keeping was one that some found hard to deal with.   I’m not quite sure why, as I say it’s always said with such niavity.  Perhaps it’s because the word keeping is associated with custody and criminal.  Many people with with chronic illnesses have life changing situations after their diagnosis and can often feel like a prisoner in their own home and need the help of others.  Maybe this is a possibility why keeping is not liked by this person.  I can’t go out on my own, and I’m very grateful for the help I get, not feeling sorry for myself – promise 😘.

Most of the time words said don’t bother me too much at all.  I can put them in a box and breathe.  What really drives me crazy is the tone that the  conversation is spoken to me in.  The very pitch can affect my mood, and hence a knock on affect on my health.  Most days I will banter and have fun, if something is said in a teasing manner I will take it like water off a ducks back.  However if I’m having a difficult day the slightest thing will reduce me to tears.

So why do we want to look good?  – why not?  I personally want to look like my old self.  I want to be my husband’s wife 💕.   My wonderful staff at Ninewells hospital in Dundee have specially manufactured coloured cream for my skin to put on every day.  The transformation is fantastic.  It covers every blemish, wrinkle, gives me a lovely colour.  And it looks so natural. Once it’s on properly you wouldn’t know I had cream on.   For me it takes a lot of work to look “normal” – I smear my entire body in several creams three times a day.  Steve’s cousin Anna commented on how much work it was and how good the transformation the Dundee cream made – this actually made me feel good that she was so open.

The good thing about the chronic illness.  It’s on the inside.  We can cover it up.  Put on the war paint and put on a smile 😀😀  it’s good to smile, it’s infectious. Smile and the world smiles with you.  When you are all dressed and tried your hardest to look good, whether you are dressed to the nines or in a tracksuit, and have make up on or not.  If I am happy I always look better.  I know I am loved and this certainly makes me happy.    It can be hard to look good for anyone at anytime but I will say my family and friends do make my life much better.

I love to buy and get treated to nice clothes and accessories.  My favourites are Ragamuffin, Fatface, Michael kors, Pandora.  My hubby, Steve is so good to me.  Steve wants to treat me and make me feel good, he is the one that sees me feeling so rubbish at home. And puts up with my grumpy pants sulking moods 😂😂 – for my sake just as well he loves me.

 

So happy to have a week in the sun ☀️☀️☀️☀️😎

The dark scary winter behind us.  Several hospital admissions.  The bulbs poked their heads through the earth and produced some colour.  As Spring emerged  I hoped that my favourite season would be kinder to me than the winter was.  However, the hope of a better spring turned into disappointment.   The sunshine break Steve booked on January 1st was something both of us were yearning.  The thought of the warmer climate, the slow pace of life, friendly locals – it was all felt very appealing.

The waiting was over.  Finally  the big tin bird was waiting on the Tarmac to transport us to our island in the sun.  I was nervous it was the first time flying since Lavita had became part of my life.

I was all very organised, letters from consultant, General Practioner,  and Community Dietician.  All explaining why I carry extra weight, have excess fluids, syringes, needles, scissors, dressings and lots of medication.

The airport was very busy, we all stood queued up, hand luggage in tow, passports in hand.  A steady drum beat like sound echoed through my ears.  The longer I waited the faster and louder the beat got.  Although palpations are an everyday occurrence, the venue was somewhat different to what I’m used to.  I  was next up, as I struggled walking stick in one hand and hand luggage in the other.  The airport staff quickly came to assistance.  They exchanged my stick for one of theirs, just in case I filled mine with illicit drugs, and the burly gentleman lifted my bag onto the belt.  I walked the walk.    Steve and I were both cleared at the same time.  All ready to board the plane.

The flight was grand.  Holiday was fantastic.  There were a couple of hairy moments like the time when I chanced having a handful of peanuts and one decided to try and expel itself out of my wound, a hair breadth from my gastrostomy tube.  As I was breathing it popping in and out, making a grand appearance.  I lay on the double bed, splayed my legs put my feet up on the wall, I got scissors and after several attempts gripped the end and pulled it out as it made its appearance – got it.  Oh yuk, all the granulation softened and started running down my tummy. My hair was soaking wet, legs shaking beads of sweat running down my brow.  Boy did I wish i was home.  I managed to clean myself up, getting a dressing on and rest up.  A few hours later I was feeling much better.

Steve and I made sure we had a relaxing holiday.  We did what we wanted when we wanted.  Steve hired a car and we travelled around the beautiful island soaking in the atmosphere.

Tranquility 😘😘

 


 

 

 

Farewell to a courageous brave friend

When Pamela Ter Gast and I made friends on Facebook four years ago.  Little did I know such a strong friendship would develop.  And just how much we have in common.    Our friendship began with a shared interest of neuroendocrine tumours.  Our chatting very soon veered to a personal level.lkkkkk  Pam, Dutch born now living in USA with her beloved Boo, has two kids – like me.   Only I have two lads, Pam has one of each; a girl and a boy.    We hooked up with two other Dutch zebras: Beth and Didi.  The four of us formed a close bond; sharing stories, we laughed and cried together.   We call ourselves the musketeers.   Of course we are alternative musketeers – Pam: Winnie The Pooh, Beth: Piglet,  Didi: Eyore and little old me:Tigger.

  

Pam was a very gutsy lady who I admired greatly.  You could always rely on Pammy to make you feel better.  When times were tough for any of us we would take a virtual travel together.  We posted our travels on social media and many people actually thought we were actually away to beautiful sandy beaches, climbing mountains, visiting castles and distant shores.  Now that would have been a treat 😉.  
This beautiful lady showered her kindness and picked me up on days I felt  pdown.  She always had an uncanny knack of knowing without asking……and offering that shoulder.   Pam did not stop at friending me.  She would drop messages to the men in my life.  When my mum passed away she was fab and sent messages to the boys, when Tony had meningitis she sent him a few messages asking how he was.  And on one ocassion when I hadn’t posted on Facebook  for a few days she sent Steve a message saying she was worried she hadn’t heard from me and asking if everything was ok.  As friends we sent each other photos, pictures, etc.  some would be funny cartoons to make us laugh others would be photos of landscapes or flowers.
This is a photo Beth took in Holland and sent to Pam.  She loved it.

  


Beautiful Pam with the infectious smile.  Always looking on the bright side of life.   Sharing a conversation brightened my day.  



  
Pam wanted to raise awareness of neuroendocrine cancer.  And whilst she bravely fought her own battle, she took time out to educate the public.  Giving talks, posting on you tube, etc.  Ever so proud of you Pam. 💕. 

Pam posted a video on YouTube:


A beautiful obituary in The Telegram 

http://www.legacy.com/obituaries/telegram/obituary.aspx?n=pamela-ter-gast&pid=180298509&eid=sp_shareobit
I will miss my conversations with Pam.  Her friendship was so valuable to me. She will always hold a special place in my heart.    When Pam said to me she knew how I was feeling, yes I knew she really did know how i was feeling.  There was no bullshit from this lady.   I feel priveliged to say she was my friend.    Pammy you touched so many people: your loss is being felt world wide tonight.

We exchanged many pictures, photos, etc.  This is one that Pam posted on my Facebook page.  Rather apt, don’t you think?
  

Our Support Group Has A New Website

When a patient with carcinoid syndrome, Ann Edgar and Endocrine Consultant, Professor Park Strachan,  got their heads together a very much needed charity was set up in Scotland:  The Ann Edgar Charitable Trust.

The Ann Edgar Charitable Trust (TAECT) is Scotland’s only dedicated charity to help and support those affected with neuroendocrine cancer and tumours and carcinoid syndrome.  It’s other main aims are to educate and promote awareness.

The South east of Scotland already has a wonderful support network set up.  We regularly meet on the 10th of each month.  We try to have a variety of meetings to cater for all walks of life and age.  Sometimes it’s lunch at Lauriston Farm, or a quiet drink at a bar in Edinburgh.  We have all met at a fellow patients house for afternoon tea and enjoyed lovely sandwiches and cakes.  June is a craft fair with home baking to which general public can attend, and July we are going to a garden party at Barbara and Alister’s house.  Looking forward to the home baking and beautiful gardens as well as seeing the lovely friends I have made.  It’s certainly not doom and gloom, the room is always filled with laughter.

Steve and I attend the meetings regularly and look forward to going to them.  We have genuinely made some lovely friends.  It’s good to be able to say you actually enjoy the company of the others, I have missed some due to being in hospital with this damn infection.  I can honestly say there isn’t anyone that wallows in self pity or looks for sympathy.  We are a mixed bunch with lots of stories to tell.  There is always someone willing to offer some advice without being pretentious.

Yesterday 26 May 2016 a brand new website was launched.  And I think it looks pretty cool. All comments are welcome.
You can see the website at http://www.taect.scot

Please have a surf, the site has useful information and I would love to know what you think of it.

 

Some Time For Us

Back from the NET specialist just ten days and we find ourselves travelling up the scenic A9 in our Audi TT roadster with the roof down.  Boy it’s great to be travelling for total pleasure.   We are on our way to Nairn.  Going to celebrate Cousin Sharon’s 40th birthday.  This was no formal birthday party.    We were dressed in 60’s clothing.  And the venue  was a holiday park.  Most of the family stayed at the holiday park for the weekend.  Steve and I opted to stay in a hotel just for the one night.   For us this worked out fantastic.

Our friends Louise and Keith looked after Buddy & Bella for the night we were away.  It’s always easier to go away when I know our puppies will be well looked after.  We pamper our pouches and we know they will get lots of loving from Lou and Keith.

The drive up was great.  The sun was shining.  The roof was down all the

We drove into the holiday park , as we were parking the car, there were a handful of hippies walking towards the social club.  Yes we are in the correct place.   As we walked into the bar there was a  see of faces,  nearly everyone had a 60’s outfit on.  We saw a waving hand, it was Anna  signalling to where they were.  Just as well really, because when everyone is dressed up so well we were all so different – especially when we had wigs on, etc.

This is is picture I took of Steve at home when he was trying on his outfit 😀



When we approached the family, Steve’s auntie Margaret turned round and almost leapt off her seat.  She stood on the floor and hugged her nephew tight. With the height difference between them Steve was on his knees whilst cuddling his aunt and neither of them looked out of place. There were tears in both of their eyes,  without doubt they were both genuinely pleased to see each other.  Auntie Margaret’s five children, Annette, Pauline, Patricia, Jimmy Phil and their partners all welcomed us into the heart of the family.  Everyone from the eldest to the youngest grandchild made us feel welcome and at ease.

Steve and I went back to the Hotel to get ready :

When we arrived back we had a meal.   We sat in the restaurant and had something to munch before a night on the tiles.  Then it was time to party…….


We all had a fabulous time. Steve and I had to get back to the hotel for 12 midnight.  We popped over to the caravan site in the morning to say our Cheerios.  We had a blether with auntie Margaret, cousin Phil, and his wife Jackie.  Annette came round to the caravan in the morning, as did Jimmy and Theresa.  This gave us the opportunity to see them and have a coffee and a blether before we drove down the road,

On the way home, Steve and I blethered away, enjoyed each other’s company in the confined space and had the chance to take time and discuss things.  Travelling has many advantages and opens up opportunities to let us air our views and share our thoughts, worries, anxieties, etc.  We pulled in for a spot of lunch at House of Bruar, of course, we can never go anywhere without me getting treated.  Steve bought me lovely soft blue cashmere gloves and a navy cashmere silk hat.

We arrived back home.  I was shattered.  The drive up to Nairn, the late night, the socialisation all contributory factors.  It had been challenging, as always, finding somewhere to stay, packing all my meds, creams clothes, pump, and every thing else that goes with me.   Was it worth it?  Oh most certainly.  For  two days we drove in Scotland with the roof down, slept in a lovely hotel, and most importantly we spent some quality time wIth family who made us feel welcome and had us belly laughing,  would we do it all again ?  Try stopping us.

 

A Trip To Royal Free In London in April

I had an appointment with the big cheese in London:  Professor Martyn Caplin.  He runs a neuroendocrine tumour clinic at The Royal Free hospital.   He is highly specialised in his field.  And people are referred from many different countries,and travel great distances to see him.  My mere 400 miles, is starters orders for some.  I have a lot of faith in our Prof Caplin.  He is very thorough, takes time to listen to what you have to say.  And most importantly remembers you are a human being and have feelings.   I know when I go down to see him I will most likely be seen later than my appointment time.  This is because he gives every patient the time they need and deserve.

For my appointment in April I need to get myself organised. Firstly we need to book a hotel for a night before and a night after the hospital.  I’m not your average human than can just jump fly down to the smoke, get seen at at the hospital and then travel back.  I tried it once.  It took over a month to recover from the exhaustion.  Premier Inn Booked.  Now time to sort the train tickets out.  It’s great that you can book everything online.  Train booked, and we can get the tickets at the station right up to the day we travel.  Cases are packed.  Lots to go in my case, feed pump, giving sets, feed, dressings, creams, medicines, clothes, etc.  Nurse has been to change my dressing,etc.  dogs are looking at the cases suspiciously.

There has been a slight hiccup with the dogs boarding.  They were scheduled to go stay together with Sally whilst we were in London.  Sally has Buddy and Bella’s son Harley.  The week before we are due to go, Bella goes into season.  Both Bella and Buddy only have one thing on their mind and it’s not walkies.  We have to put plan B into action.  Our friends, Louise & Keith look after Bella and Sally look after Buddy.    For both our dogs this is the first time they have stayed away from home.  Anytime we have ever been away one of our sons have looked after the dogs.  This was a big deal for both the dogs and Steve & I.   I have to say both dogs were looked after impeccably.  They were walked several times per day, played with.  And when we came home we could tell although they were very happy to see us they had enjoyed their time away.

Our train journey was eventful.  We met a very gutsy lady and her 7 year old son.  They travelled from York to London every Sunday.  The young lad attended Great Ormand Street Hospital for an injection.  He was under a trial drug scheme.  He has muscular dystrophy.  We chatted, shared stories, laughed.

When we got to the hospital we used the self check in.  Before I could take a seat in the busy waiting room the nurse called my name.  We walked down the corridor and into the room.   She took my weight. she said.  The Prof wants to see you, if you just take a seat along this end.  Steve and I parked our bums on the seats and waited on Prof Caplin calling me.

Fifty minutes passed my appointment time the familiar gent calls my name.  Prof Caplin kindly waits till both Steve and myself are in the consulting room.  We take a seat.   There is a lot to discuss.  Since I saw him last I’ve had my gastrostomy tube fitted, been hospitalised several times with sepsis/infections, had feeds, cream and meds changed.   After we talk, he helps me up onto his couch, he examines my belly and has a good look at the peg site.  Listens to my chest, feels my neck, under my armpits.  He says  quite a lot of granulation there.  The general all round site and your skin is healing well but you do have a long way to go yet.   I take a seat back beside Steve.  Prof mentions my last 5HIAA test was elevated. The result was 175.  A tad higher than he would like.  He says he would like me to get a scan.  Steve pipes up,  will that be a gallium scan.  The prof immediately answers us,  I can organise that for you, no problem.  You will only wait a few weeks on the scan.  I will book it now whilst you are here.   He then goes into the drawer in his desk and takes out a card and hand it to me.  This is the number for our specialist nurses.  Once you have had the scan and the result is in the nurse will phone you and discuss the results with you.  And what happens next.
We were back home in Scotland three days later.  Two days after  we arrived home the telephone rang, it was the nuclear medicine department of The Royal Free Hospital in London.  My scan was in eleven days time.  Certainly cannot complain about the quality of the service I am getting.

 

Hospital Visiting Experience

Depending on what I’m in hospital for and how poorly I’m feeling has an awful lot to do with how many visitors I can tolerate, or need, and who these people are.   When I was in The Royal Infirmary with sepsis after getting my gastrostomy tube fitted the first week I felt really ill, was in high dependency and only had Steve visit, when I started to feel slightly better my boys, brother and sister visited too.  As I progress, my nieces, nephew, cousin, godson and friends visit.  My goodness just shows you how long I was in hospital, the amount of visitors I had.  The chatter kept me going, news of what was happening in the outside world keeping me informed and entertained.  Although I do have to admit, on the days there were between three and five visitors at my bedside I found it quite difficult.  I was tired and couldn’t keep up with the conversation.  One to one I can handle, more than one voice in my lug and the noise is scrambled.  I find myself lying back and letting my visitors converse between themselves.   What some folk don’t realise is both talking and listening can be very tiring.  A twenty minute conversation can deplete me of all my energy.  Leaving no resources in reserve for later.  Even for someone as gabby as me a day of complete silence can be a necessity to get those reserves firmly back in place.  Not all days are like this, Some visits are much needed and a total boost, they are the brightest part of the day and when I share some of my most intimate statements.  It’s the actual blethering that builds up my energy, gives me that extra oomph. 😀😀

 

image

 

My last hospital stay was only a couple of weeks ago.  I was in Ninewells, Dundee.  I was feeling a tad rubbish and tired.  I was in a friendly room with another five ladies.  My first visitor was on the Sunday night.  It was my friend Susan.  We hadn’t seen each other for quite a while.  It was so fantastic to catch up.  There was so much to talk about.  Susan was diagnosed with breast cancer just four months ago.  She got the diagnosis two days before Christmas.  Courageously she has fought this awful disease, had her breast surgically removed.  We had so much to talk about.  We chatted away, shared experiences, talked about our children and spouses.  Laughed out loud that the others in the ward knew we were happy to be together that evening.  The wonderful thing was that when either of  us said we understood how the other was feeling we really did know how each other felt.  We trust each other’s judgement and certainly don’t feel put out by offering advice.   Susan made jokes about ‘feeling a right tit’ – I bantered back and we laughed loudly.  You could see the other patients in the ward looking.  They obviously heard our entire conversation, after all I take after my mother talk fairly loud and there’s not much distance between beds.  There were two ladies in particular wondering is it ok to laugh?, should I join in at all?   They were intrigued in what we were discussing.  On the odd ocassion you could tell there was a thought that popped into their head,  surely Elizabeth shouldn’t be saying that, or That lady visiting – is she joking.  Susan has chosen not to go for reconstruction surgery.  However, she has picked up her new boob.  It sits perfectly in her bra.  And from the outside with a bra and tshirt on you wouldn’t know which one is the new addition.  She proudly stood hands a kimbo whilst I admired her new figure.  We discussed how it looked and felt.  What a fantastic option it is for a woman in her early 50’s.  She did get offered surgery with build up breast at the same time as the mastectomy.  This would have meant several more hours in the operating theatre and longer recovery time.  For Susan she made the right choice.  She is comfortable with her body.   Her hubby is supportive, loving and caring and her daughters have been just grand.  Friends have rallied round and supported, helped out and visited when required.   Susan is upbeat and doing well and has already gone back to work.  We talked about all this too at the visiting.  As we blethered, one of the other patients came over to my bed to talk to us for a couple of minutes.  Jan has leukaemia, I think it helped her to see us joking and laughing.  Taking a happier outlook on life no matter how bleak things can seem at times.  This was one of those days that the visitor most definitely recharged my batteries and gave me that zest for life that we all so much need.

 

image          image           image           image

The Light Experience

Sunday 13th March , we are driving in familiar territory.  Steve is in the driving seat on the Audi TT, the roof is down and we are crossing the firth of forth with the wind in our hair. The familiar smell of the sea breeze.  I so love the convertible, I merely tilt my head and I can see the clouds roll in that stormy Scottish sky, no need to put down the window or take a break and get out of the car for a breath of fresh air.  We have the Bose sound system on at warp factor.  Steve and I singing all the familiar songs that come on at random at the top of our voices.  got to say all our friends will vouch for Steve and say he is a far better singer than I am.  This is not only a routine drive of recent.  I went to university in Dundee and Steve picked me up 31 years ago on the motorbike and we drove the exact same route.  I’m sure I listened to the same music and tilted my head and gazed at the clouds and made pictures and stories just as I did this Sunday.

The two hour drive  saw us entering the familiar surroundings of  Ninewells Hospital, Dundee.  I’m up here this time for a three night stay.  I will be attending the photobiology department for tests and treatment.  All part of the ongoing treatment for my photosensitivity. Just arrive in the ward and a smiling face at the reception desk peeks over the pc monitor. Hello Sweetheart, How was the drive up? Beds all ready for you, we will get you round, get you settled and then get the doc in to clerk you in.  She comes round from behind the desk and sees me to my bed.  Its so nice not having to explain who you are, the nurse recognises you from the last time you were in the ward.   I meet my fellow patients in the room, I am in a room of 6 of us. in my days in  we talk, share stories, I will do a separate posting on ‘life on the ward’  Steve makes sure I’m all settled in.  Makes sure all my clothes and pjs are in my locker.  My pump is up on my table and all my feed and giving sets are organised.  Steve disappears for 10 minutes, says he has to go to the shop for a sandwich.  He comes back with a book for me to read.  He knows I have my kindle to read, but he also knows how much I love to read a book, especially a new book, I’m a new book freak, I cant help but  sniff the inside of the book, the smell of it is something I will remember from my childhood and will always love.   I gave my lovely hubby a hug, walked with him to  the private reception area and had a quick snog.  Steve left to go home to Buddy and Bella.  I went to lie on my bed.  That night I got a visit from our friend, Susan.  That visit most certainly needs a posting of its own. By the end of the visiting it was time to sleep. Early start in the morning.

Its first thing Monday morning and time to go to photobiology.  The porter wheels me to the department and parks me in the waiting area.  I’m sitting there daydreaming, perhaps been there for all of 4 or 5 minutes when I feel the chair move and I hear a familiar voice talking at my rear.  Its Dr Sally Ibittson.  Sally is immaculate, such a beautiful, perfect lady.  She makes you feel at ease and talks to you not AT YOU or DOWN TO YOU.  She always makes sure you fully understand everything and usually runs late, since she gives everyone the time she feels they deserve.  Sally starts to wheel me through the busy waiting area, quite a challenge, she kept apologising and asking if I was ok, which I was.  We got to the consultation room.  We discussed how things had been, my current meds, and where we think things should be going.  It was decided we would do the same provocation test as last time, and do a few testing areas on the back.  If all goes well we will try a short burst in the photo therapy light machine, if all ok, we will get it arranged for a machine to get sent to our home for a period of time home treatment.    First things first the provocation test and some other lighting and mapping.  Sally wheeled me through from the consultation room to the treatment area.

As I arrived at the treatment/testing department Andrea the senior technician was standing in the hallway, Cup of tea, before you start young lady? don’t want your blood sugars dropping   She didn’t even have to ask how I take my tea, what a memory.  My eating habits have changed since last being in photobiology.  I have had Lavita fitted.  I can have half a cup of tea.  but I had to bolus 300 mls of feed down Lavita  rather than have a couple of sandwiches.  a wee tad more awkward fiddling around with syringes and flushing my tube with sterile water, but the wonderful staff make it all ever so easy and nothing ever seems like too much trouble.

Chat over, cup of tea drank, bolus feed in.  Body fully refuelled.  Ready for action.  Mr friendly technician hands me my gown.  knowing full well it will take me longer than the average human to put it on.  Me and co-ordination aren’t the best of friends.  As long as I take my time, I get there,  Steve said he has never seen anyone making such a meal of trying to get from a tshirt to a gown.  Once ive got the gown on the next challenge is trying to get on the chair.  Its a tall stool like chair.  For a 5 foot 2 inch person like me it feels like climbing a mountain.  Once I’m on the chair, its fine, its just getting up to the dizzy heights.  Although when I am on the chair my legs aren’t long enough to touch the ground, so my legs are left swinging back and forth.  The doctors come in and decide exactly where they want the machines to be lined up and for how long.  The provocation is to be on my wrist and various others on my back .  When you are getting these tests done, you need to sit or lie incredibly still.  It can also get quite hot, depending on where you are getting it done and for how long. The staff are fantastic and blether away whilst the testing is going on.  They do their best to make sure I’m comfortable at all times.  The provocation test came back positive fairly quickly .  By the afternoon the skin was inflamed, hot and slightly broken,  The doctor got the technician to take photographs of the wrist.  They also noted the results of the mapping on my back. The provocation test timing has been halved.  And the strength was reduced.  This test gets warm, every part of my arm with the exception of a square patch gets covered with towels,and  a special board,  I wear a pair of special specs to protect my eyes.

I need taken back to the ward from photobiology – it’s s fair wheel to the ward and I can’t do it on my own.  One of the technicians carefully steers me along the long corridors , up the lift. Gives us the chance to talk about today’s events.  And  the opportunity to chat about life in general.   The technicians are fantastic with me and build up a trustworthy bond.  It makes it easier for each time you go.  It can be a lonely scary place, even if you are only getting light treatment.  Having a familiar face in the staff makes me feel at ease.  The technician specialist that wheeled me up to the ward stopped at the nurses station and asked to speak to the nurse in charge.  I would like you to dress Elizabeth’s peg site and if you can, please could you either contact GI or a peg specialist nurse and get them to come and have a look at the site and advise on barrier creams, steroid creams and dressings.  They of course did refer me immediately and within an hour a nurse specialist was at my bedside.
Tuesday morning, up bright and early and away to the photobiology.  Wrestled with the gown, clambered on the chair and the docs have came in to see what’s what.  The results have shown that the photo sensitivity has definitely increased.  Sally has come armed with quite a few other doctors today.  We all discuss how I have been over the last few months.  It’s recommended I get an eight week course of phototherapy.  The doctors are concerned if I  got my treatment in hospital I would be at risk of catching an infection.  So I am getting a phototherapy machine delivered to the house.  It’s a fairly large machine.  Just over 6 foot tall and opens out to roughly 5 foot wide.  I’ve got to pay for the courier delivery charge to the house from the hospital.  The nurse estimates it will be approximately £300.  I will have to get the phototherapy treatment every year.

 

Dr Sally Ibittson wants me to have an experimental dose of phototherapy.  So I go into the phototherapy suite.  It looks like there are several white Dr Who Tardis’s – the room has an icy chill to it.  I shiver.  The technician placed a blanket over  my shoulders it’s the cooling fans.  The dose is to be a patch on my inner left wrist.   Because it’s only my arm I don’t need to go in one of the cubicles.  The technician wheels me to a chair.  I sit at it and get comfortable.  The technician puts a stocking bandage over my arm from my elbow to my shoulder and one  from my wrist bone covering my hand and completely over my fingers. Then a towel is wrapped over my outer wrist.  The phototherapy machine then gets turned on for 4 and a half seconds .
Wednesday morning.  I have a meeting with the lovely Dr Sally Ibittson and my photo dianogstic specialist nurse, Susan Yule.  We discuss the benefits of getting the phototherapy at home. The risks, side effects, etc.   it’s hoped  that getting eight weeks of phototherapy will build up my skin and greatly help with the photo sensitivity.  They did admit the first year is usually a bit of a learning curve.    I’m due to have my machine end of June.  I will need two or three days of training at the hospital.  Also need to make sure we get a setting for the machine.   Susan takes me round and let’s me see a machine similar to one that will be delivered to me.  She tells me all about the machine and what to expect at home.  It gives me a really good insight into what lies ahead.

It’s a short stay for me this time,  my hubby picked me up at 1pm on the Wednesday.   As always the staff at ninewells always took fantastic care of me. 

The Pups Birthday

bellaandpups

Bella feeding the contented puppies

 

The 1st of March 2015 was a rather eventful day in our house.  Our loving Labrador, Bella gave birth to eight puppies.  Ever faithful Buddy looked on as she delivered each individual pup.  One year on and we are still in contact with five of the owners.  We hear how they are progressing.  It is a wonderful feeling to know that you helped delivered these little guys into the world and now they are part of another family.  We get to know what joy they are bringing to others and what their role is now they have left the nest.

 

buddyandgunner

Buddy looking after Gunner before he leaves the nest

 

 

March 1st 2016 celebrated their 1st birthday.  I sent a message to the families to say happy birthday to the dogs and hope that they were well.  I got messages and pictures back.    It makes me feel good to know that the dogs are loved and well cared for.  And I am more than happy to be in touch and have made new friends through our dogs having a litter of puppies.

 

kaiwithcake

Kai eager to get to his birthday cake

 

 

kaisbdaycards

Kai’s Birthday cards

 

Kai had a birthday party, with dog friends invited.  Kai got presents, cards and cake.  A lot for a one year old dog.  ‘a couple of the pics from Kai’s party. He had a great time, ran rings around everybody. Was hard to get some pics with the bedlam going on. He had 3 doggy friends in all going bonkers lol Wee Millie the cocker spaniel is knackered.  He’s totally spoilt but we love him to bits.’ Kai lives with a lovely couple who keeps up updated on his progress.  He is a lucky boy to be in this family; well loved and will always come first. You can tell by just looking at them that they were meant to be.  Kai fits into his home so well. He sits on the sofa, looking around like lord of the manor.

 

sandyspider                    sandy

 

Sandy went to live with a couple with a little girl.  He is loved to bits by the family.  I got a message that said ‘Hi Elizabeth we are all doing well.  Nobody can believe that Sandy isn’t one yet because of his height.  He has the square nose like his Daddy.  We will have to bring him to see you all, but will ring first.  This photo was taken at Halloween, he loved his spider, it only lasted a day.  Sandy loves cuddles and up at the school he barks if people don’t come over and pat him.  He’s a case, he patrols the back garden and barks if he sees something he is not happy with.  He loves the trampoline, you should see him and Aimme jumping on it, they are great pals’

 

Jake is a lovely Labrador that lives with his human parents (who love him very much) and two pussy cats.  He is a cuddly dog, who loves to be pampered and snuggled in.  He is like his parents and is quick of the mark in running around and playing with toys,  but equally likes to lie in and if you didn’t know them better you would think they were lazy and thought they were lying there all day.  Jake likes to tell you what he wants.  His folks sent me a message with a photo of him sitting up straight and it said  ‘that is the baby telling you he wants this’ and then a photo of him outside.  Clever dog.

 

jake

Jake sitting waiting to go gout for his walk

 

 

jake1

Jake standing ready for the off…..

 

 

 

gunnerandbrandy

Gunner and Brandy playing at the Beach

 

gunnerandlouise

Louise & Gunner

 

gunnerandkeith

Gunner & Keith

 

Gunner, is the only fox red Labrador exactly like his daddy, some of the others have similarities, but Gunner is a dead ringer for Buddy.  Gunner has gone to live with Louis & Keith, they have a boxer bitch, Brandy and a couple of cats.  Gunner has fitted in perfectly.  Louis and Keith have become our friends.  They pop down to see us, with and without Gunner.  Louise and Keith came to see me in hospital, they couldn’t bring Gunner so brought a beautiful framed photo, this fair cheered me up and let the staff see one of the beautiful dogs Bella has given birth too.   Its been a win win situation.  Louis and Keith take Gunner and Brandy on lots of outings, the dogs enjoy lots of walks .  Gunner is also getting trained to the Gun with Keith.  Merely as a hobby, both man and dog appear to love it.  Gunner is very protective like his Dad and follows Louise around the house and sits and waits whilst she has a bath, etc.

 

Harley, had a lovely birthday.  He got a cake and presents, as you can see in the photographs.  Harley left us at 6 weeks old.  He gets well cared for by Sally.  He has another Labrador as a companion, his name is Cooper.  Sally has taught Harley well, he does what he is told, gives paws on command, rolls over, does all sorts of wonderful tricks.  Harley loves long walks and running around with some of his other furry friends, but I think most of all he likes to get very wet and muddy: just to keep Sally on her toes.   We have kept in close contact and I get kept up to date with all his progress.  Sally has brought Harley back to ours for a visit.  They have visited to meet up with Gunner and had lots of fun with their parents, Buddy and Bella.  And they have visited for a quieter visit, just Harley & Sally.  Where Harley has had a cuddle and played with Buddy and Bella for a while.

 

harley              harley1

 

harley2

 

It was a big decision for us to breed Buddy and Bella last year.  Would we manage with the pups with the way my health is the way it is?  How busy Steve can be for work? We talked about it at great length.  Then decided to let nature take its course.  They mated on 1st January 2015 and Bella gave birth on 1st March 2015.  I’m not going to say it was easy.  Once the puppies got to the three week stage and they were needing weaned onto porridge, it began to get a bit of hard work.  But the first three weeks, Bella kept them clean, fed them and to be honest you hardly heard a peep out of them.  When they started eating the porridge they were like little gremlins – yum yum yum.  Got to say though, all well behaved, and kept to their own bowls.  The key was organisation.  Steve’s cousin, Anna, from Suffolk, came to stay with us for one week, she was a great help, washing floors, feeding pups, etc.  Steve and I had most of the feeding and cleaning down to a routine, Steve did all the manual heavy work.  I will admit it was hard work, however it was worth every minute of it.  The cuddles from the little puppies, the joy and warmth we get from both Buddy and Bella.  When the day came for the new owners to pick up their pup and take it home, you could see how excited they were, the looked at the puppy all doe eyed and eagerly told us of the items they had purchased for their new addition and how they could not wait to get home and show them their new bed.

When my phone texts or I get an email to say how well one of Bella and Buddy’s pups are doing I feel a sense of warmth and a big grin comes across my face.  My dogs are special to me and I’m so pleased their children are have a special place in the hearts of the people they live with.  I’m so happy we had a litter of puppies.   The company of my own dogs, the new friends and hearing how the pups are getting on and developing into fully grown dogs is great for me.  There are days I don’t feel well enough to go across the door.  The contact with others, communicating, happy stories – it all makes the world a better place.