Big boys do cry

Being at home permanently since March 12th has certainly given me time to think.  There has been many a lonely hour to reminisce.  Its been lovely to look back and remember events that have gone by, places I’ve  have visited, people that have came into my life and made an impression; left their mark.

In my 54 years of life its been happy, eventful and surrounded by a great many beautiful caring characters.  From the moment I have been able to comprehend I was showered with love.  As I grew up I was always shown kindness,  the family philosophy was treat others as you would like treated yourself, I will never ask anyone to do something I wouldn’t do myself.  Yes these days as I am getting less able and I  will pay someone to clean, paint  or fix something  – I’m sure these tradesman appreciate the work.

Getting back to my time to think.  When I was sitting putting my feed on I was thinking about when part of my job included listening to people and their problems, how they were feeling.  I encouraged them to talk about their feelings.  Express exactly how they felt at that particular moment and how to deal with it.  I would gently persuade them to chat and through time just by talking they would soon realise what made them happy and what made them stressed and sad.  We would work on the positive aspects of their everyday living and help them get back to a happy place.   One thing that did happen to several people is that at some point during their journey was they would face an emotional encounter.  Regardless of their gender, age or size they would talk about whatever may be bothering them, or perhaps on the contrary what has made them very happy that day and then suddenly the voice would go quieter,  and that emotional encounter would take place; the real journey had begun and I would consider my work as continuing success…. Looking back at how a lot of us are feeling at the moment, frightened to show our emotions, a lot of people get told to be quiet, not talk about their feelings, not cry.  If they do cry many are met with Now come on, stop that crying, pull yourself  together.   Stacy Solomon on Loose Women was talking on ITV and said her mum used to vacuum when she was crying, to hide the fact that she was.  All very sad.  We need to be allowed to show our emotions.

I still remember one particular chap when I was working, he was your average build gent, and a father of three, he felt he was failing all round, his family, his work, his health, and most importantly himself.  Of course he wasn’t.  When he got to his emotional encounter he quietly sniffed away the tears and continued to talk, shortly afterwards he described blurry vision and tears threatened to spill from his eyes.  He wiped his eyes so much they were red and swollen. I handed him a handkerchief and said let the tears happen,  please don’t be embarrassed.   His lips trembled, an involuntary whimper escaped his lips as tears spilled over the sides of his eyes.  He looked over at me, his face shouting out help me and please listen.  His body wracked with an onslaught of sobs and tears.  The tears raced down his cheeks.  He cried for a few minutes.  When we discussed events he explained how relieved he felt and thanked me for getting him there.  We still had a way to go, however, the big lesson learnt was not to these suppress emotions;  and deal with them appropriately – the basic emotions are happiness, fear, surprise, sadness, anger and disgust.  The message from this experience I took was most definitely people gain from expressing their emotions, getting upset, talking about their problems; a problem shared.  Big boys do cry.

 

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I most certainly do know being home on my own and having this time to think I also have to to shed a tear and I have probably cried more in the last few weeks than I have done so for quite some time.  Although I do have to say my life is made so much better by those folks that message me and ask how I am, who give me a phone and have a natter.  Please drop an email or a text or give a quick call to your pal or your mum, brother or sister, etc.  I have noticed there are some folk that I only get texts if I send them one first, would I get one asking how I am if I didn’t send them one?  Perhaps I would, maybe I wouldn’t!!! But one thing I do know there are some folks in my address book that we send messages to each other regardless, sometimes I’m first, sometimes their first.  But one thing I do know we deeply care about each other and look out for one another.  You guys know who you are; I love you.

Hold your hand everday

As the pandemic continues.  We are still in lockdown.  Life continues to be on a different path.  Real life physical human beings I see; my husband of coarse, I live with him and so very grateful we have not only been lovers since 1982 but best friends.  My nurses; to tend to my gastrostomy tube, change dressings, etc, etc.  And see anyone from a distance at the door when they deliver parcels and mail.

Modern technology has saved my sanity.  Steve and I having a long lie on Sunday morning, it’s 9am and my mobile telephone has that distinctive ring.  I know it’s a FaceTime call.  Simultaneously Steve and I say know who that will be.  I click the phone and can hear the joyous tones.  ‘Morning, what are you doing in your Bed Granny’?  ‘Having a got chocolate’ is my reply.  We are having a three way conversation between our house (Steve & I) , Stuart & Alexandra, and Teeny & Grace.  It’s fab, we all blather loudly, the girls can’t believe we are still in bed. It’s Sunday, I say in my defence.  They have us laughing.  Along the hall we can hear the dogs.  They can obviously hear the girls talking and they are excited.  Can we see Buddy and Bella please.  I toddle Along the hall.  Bella is actually smiling.  They are pleased to hear the kids.  Morning Bella Boo, Morning, Buddy Boy, says Alexandra, miss you,  the labradors tails start to wag frantically.  Grace calls on Frieda the cat.  Alexandra asks ‘Granny can you go out the back and say morning to Birdie please’.  I go see the beautiful black lionhead rabbit.  The girls are ever so happy.  Right that’s enough I say, granny is wiped out now.  I sit on the seat at the table very happy and blether away .  I maybe can’t see them all in the flesh, however a video call like this makes the world worth living.   We all chat say what’s been happening and what the plans for the day are.

Both girls had plans to play in gardens.  Alexandra said she was going to be drawing and colouring in later.  Grace was going to be playing games.

 

Hold my hand and Smile Each And Everyday

Alexandra drew round her hand in her notebook,  she tore out the page.  Left the page for me with the drawing.  She said I can hold her hand anytime.  She said on a FaceTime call to me Granny I would just love to hold your hand everday

 

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I was so chocked up, it’s difficult to believe Alexandra has just turned 4 years of age.

At this difficult time in this crazy world we need to be grateful for what we have.  Make the most folks.

Alexandra and Grace:

Such Kindness over the Easter Weekend

As we all know and expected this Easter Weekend is somewhat very different.  With most of us being in isolation and being asked to stay at home.  I expected to feel lonely and miss the activities that I had been expecting to do and the people I was looking forward to seeing. However, there were a few folk that did some very nice act of kindness towards myself, Steve and my labs which made me feel very special, loved and happy.  Certainly not lonely at all.

 

Just before Good Friday, my nurse was in to service my gastrostomy tube and change my dressings.  As well as check on my well being, and see how I am doing.  As my nurse was leaving that day she left an Easter card for Steve and I and doggie treats for Buddy and Bella – all in a lovely Easter bag.

 

I got a special FaceTime from my 4 year old granddaughter Alexandra to let me know she had drawn pictures for us.  She had done a special rainbow for our window and would post it through our door.  Her dad sent a text of her holding the picture.  I was so excited to get it.  Words cant explain how much we miss seeing her,  She usually visits every weekend and when you are used to seeing a grandchild on this regular timing, this lockdown period feels like lifetime.  She is my pot of gold at the end of the rainbow.  I was in hospital for 12 weeks with sepsis and hardly saw anyone however I felt poorly and had no sense of time on many days.  This is different.  However, with the technology we have and keeping a positive attitude we can get through this.  Chatting on FaceTime and sharing what we have done throughout the day makes me smile, we laugh and sing, I just love my FaceTime time.

 

 

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We have had a relaxing Easter weekend.    Writing, gardening (for Steve) some tv and lovely quality time together with the labs.  I was in the Wetroom putting on my creams when I heard Bella ‘friendly barking’ so I ignored her.  Half an hour later I went through to the kitchen to put on my feed.  As I reached for the pump I noticed my mobile phone had several notifications.  As I sat down to read them, I noticed one was a message from Danielle.

Danielle has been my friend for at least 23 years.  We have been through a lot together.  I know if I message Danz and ask can you please come here she will come.  I have been there for Danielle emotionally and I know she will be there for me.  Again I am so grateful for technology so we can chat ad text.  So what did the message say?  It said.  “I’ve  left something at your front door xxxx”. What was left?

 

The most beautiful canvas, of course it is zebras.  And cakes for uncle Steve.  He will love them.  Tonight I will light one of Natalie ’s candles and give her an extra special thought, not that she is ever far rom my mind.

A massive thank you to my special people this weekend, you are what keeps me going.  You all know me and what makes me tick.  Why, perhaps its because I love you guys let you into my heart and you know what makes me happy.

Why zebra?  Neuroendocrine cancer is rare.  Zebras are rare.  When doctors are getting trained they are told

  • when you hear hoofbeats.
  • Look for horses not zebras

Many charities and people with net cancer adopt the zebra as their mascot.

 

My beautiful rainbow picture all coloured in.  Up in my window showing with pride.

 

 

Natalie Ann’s Candles

 

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The Arrival of The Coronavirus

We are approaching the end of March 2020 and this weekend we should be away with friends from the The Dunedin Chapter  ,

I so enjoy being part of this group.  It is our biker family.  From the second we joined we felt part of something.  A warm welcome always awaits us, a support network is available in variety of ways.  Help with the physical Harley Davidson motorcycles; buying, servicing advice, etc.  Things to do; runs, rallies, etc.  Friendship; many friendly faces, great companions, lots of advice, etc.  Socialisation; we all get together and have meetings, weekends together, nights out, lunch meetings, breakfast clubs, chippy runs, etc.  All in all I love belonging to The Chapter.  We are now on to our second Harley Davidson, I have been on motorcycles since I was under 5 years old,  on the back of my brother when my feet couldn’t reach the footpegs.  I have been a pillion to my hubby since I was 17 years of age and I’m now nearly 54.   We have had motorbikes the majority of our married life.  Fifteen months ago we thought we would dip our toes in the water and visit West Coast Harley Davidson for a look at the bikes and what they had to offer.  before we knew it we had  decided it was time to get ourselves a Harley, it was a little Street Rod.  We thought best start small  and not break the bank.  Just to see how we would like the ‘Harley way of life’ and boy do we love it.    While we loved the wee bike, it was just that, too small and So a few months later we traded it in for a beautiful fatboy low.  We got this one at Edinburgh Harley Davidson

This weekend a trip to Aberdeen had been organised by our Harley Davidson enthusiastic friends.  We were all getting together to stay a night in a hotel and have a night out and raise money for the air ambulance.   The plans were, to take a drive up together on the Harley Davidsons if the weather was warm enough and I was feeling up to it, if not take the four wheels and book in to the The Craighaar Hotel in Aberdeen

 

I was so looking forward to going to Aberdeen. Due to my health, the neuroendocrine cancer, the carcinoid syndrome, the treatment I need and the fact that I get fatigued very easily I don’t go out that often.  I find life difficult, some days a general task feels like I am walking around with a 25kg bag of sand on my back.  Needless to say I am very familiar with my own surroundings and am used to being in the 4 walls I live in.  I can be home for three weeks without crossing the door.  My district nurses come to ‘service’ my peg.  Change my dressings, administer my octreotide injection and deal with any other at home health condition I may require. They are wonderful and I couldn’t do without them.

Although I am used to spending time at home on my own, with the company of my two Labrador’s within my four walls I do spend quality time writing, which I enjoy a great deal and I have embarked on a course which I love the challenge.

Suddenly the world has been hit by an eerie storm, one which we have never seen the like before. The human race has been struck down with Coronavirus.   The arrival of the Coronavirus is here.  For a great deal of folk it has been fairly harmless, however for many it has proven deadly.   To find out a little about coronavirus visit – https://www.nhs.uk/conditions/coronavirus-covid-19/

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Countries such as Spain and Italy are ahead of the UK and have many deaths and have put in strict measures. Here in the UK, we have had to take on a different way of life. Schools have been closed, where possible people are working from home, people are instructed to stay home unless exercising, which is only once per day. Social distancing has been put in place, with everyone to keep 2 metres apart. All these measures have been put in place to try and Stop the spread of Coronavirus. This virus is escalating and getting out of hand, we need to self isolate and stop it. Many people have it, are in hospital, some very poorly and on Ventilators. It’s all such a worry. People are wearing gloves, masks and using hand gel in abundance. Hospitals are running short of ventilators. There are more people needing the machine that the country has; something has to be done.

A team put their heads together – staff from formula 1 Mercedes , staff from University College London hospital (UCLH), and a team from university college London to adapt and improve existing CPAP in a process known as reverse engineering.   Basically they have helped create a breathing aid to help keep coronavirus patients out of intensive care.  You can find out more at the following – Mercedes F1 team helps create breathing aid

Life has become very strange for many people, our country is in lockdown, bars, cinemas, restaurants and many shops are closed.  Public gatherings are banned.  Plus many more other measures are put in place.  Some people feel sorry for themselves and are sitting at home whining and moaning, complaining they are bored and wishing they could get out of the house.  Whilst its understandable that they may be bored, sitting at home when they are used to working several hours per day and keeping busy.  Or going out and having fun, playing sports or going to the cinema, etc.  However, these restrictions have been brought in for our own good and it won’t be forever.  We should take time at home, learn a new skill, cook, draw, do a bit of gardening, enjoy reading a book, do some knitting or sewing, play old fashioned board games.  And most importantly our thoughts and prayers should go out to people that are in ICU beds in hospital, on ventilators, fighting for their lives.  This virus not only attacks the vulnerable like me, or the elderly like my 87 year old father, it sadly took the life of a young lady of only 21 years of age with no known underlying health conditions, it also took the life of a 54 year old doctor, the youngest person to die has been 18 years of age.

I did read a couple of pieces of good news the supermarket Asda is donating £5 million to   fareshare and  The Trussell Trust to help the country’s most vulnerable people through COVID019  Asda will prioritise access to stores for NHS staff as of next week every Monday, Wednesday and Friday 8am – 9am in larger stores.   Well done Asda

I know the next few weeks are going to be very trying for us all.  The NHS are doing a fantastic job in looking after the patients in the hospitals, at home, etc.  Carers are looking after the vulnerable the best they can.  Supermarket staff are stretched and pushed to the limits at times, the shelves look like its christmas, with the exception its not happy, clappy cheerful customers, its frightened folks walking into the unknown.

For me tomorrow Ive got my district nurses coming to do my dressings, service my tube and give me my two weekly octreotide.  Tomorrow the nurses will be gowned up, masks on.  Whatever will my labradors Buddy and Bella say, they won’t be getting their treats for mummy being a good girl and getting a very large needle jagged into her.

First Person with Net Cancer that made me smile :)

Over 6 years ago I went to an information day hosted by   Scotland’s Neuroendocrine Cancer Charity; The Ann Edgar Charitable Trust  I went on to go to support meetings every month.  There is a group of us that have became friends and a firm support to each other, which is lovely.  Some days its good to be able to talk to someone that you know really understands how you feel and you never feel patronised when talking to each other and at times you really need that ‘I know how you feel’ conversation’

The first person I saw at the information day was such a lovely chap and his wife.  He was  smiling from ear to ear and guiding all participants that were going into the conference.  Despite having never meeting the man before you couldn’t help smiling back, he had the kindest gentle smile.  He would stretch out his very long arms and direct  you into the room.   We have became friends very quickly and seen each other at most meetings.  There is a nice core number of us that try and get together and blether and spend time together.  I have had help organising the tea party and we all went out to the theatre, day out on the barge, a night in my local pub, singing songs and doing magic tricks and said friend getting up and helping out with rope trick – oh boy we  had so much fun.    Norman was twenty years older than me and called me the youngster.  I felt he looked out for me in a way when we sat together, it was his nature.  When I organised the tea party, and my goodness what a lot of work went into it, he said, now young lady before we open the doors to the public you get half an hours shut eye.  Sometimes he would quietly talk and other times he would stretch his long arms like a giant and bellow what he wanted his audience to hear.  Norman’s first words to me were always and how are you today my dear, is life treating you kindly?  He would have that big grin on his face and it would warm my heart.   Although Norman was his own man, him and his wife came as a pair and they were very much together.  One of those most beautiful relationships each partner knows when the other has had enough and needs to leave, when they are tired, hungry etc.  They have the best tales to tell from their travels on holiday.  They separate across the room and yet communicate with just a glance and before you know it they have made a decision and you are saying cheerio to both of them, see you next time.

This blasted life limiting illness  at times imprisons us in our houses, makes one feel so ill you can’t do a thing, medication, hospital appointments, etc become a way of life – however, meeting each other and sharing some of the good and the bad really helps me get on with my journey.

I found out sad news last week, my pal passed away.   Norman was diagnosed with neuroendocrine cancer 13 years ago.  I feel privileged to have known him and spent time with him and Margaret for the last 6 years.  I was diagnosed with carcinoid syndrome 10 years ago, whilst a sad occasion like this leaves one thinking about our own mortality, I count every day as a blessing and am happy with the treatment and care I’m getting from my consultants, doctors and nurses.

Today was Norman’s funeral, unfortunately with the coronavirus the world has gone a little crazy.  We are on a lockdown situation and are living under certain restrictions.  Funeral services are allowed to go ahead, however are restricted to immediate family.  I was able to watch the service on a live podcast.  I sat in the comfort of my own home in front of the open fire and watched Norman’s funeral service.

Norman Boe was The First Person with Net Cancer that made me smile 🙂  and I will miss him so very much.   Thank you for being my friend.

“Go my friend and enter into eternal joy and peace, dance with angels in eternal light and love”

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.

 

 

 

First Steps To Writing A Care Plan

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I had an appointment at the Western General Hospital with a consultant I have never seen before.  The Team she is with is The PACT Team.  This is Patient Experience and Anticipatory Care Plan Team.  The main purpose of the meeting was to discuss my health problems and for the consultant to take notes and later write up a care plan which can be accessed by A & E staff and out of ours doctors, to better understand my health problems and my preferences.  Once the plan is written up a copy will be sent to my consultants, my GP and myself.

 

It was rather a daunting experience, chatting about any possible imminent admission to hospital.  The consultant was lovely, and she explained everything.  It gave me every opportunity to talk and ask questions.   We discussed what brings me into hospital and what is best for me and what staff would benefit from knowing.   She asked me some very personal questions and I gave her truthful answers.  It was easy to chat to her, she was kind and caring.  She turned the computer screen round so I could see what was type written about me.  There it was in black and white: various medical conditions that affect every day life.  Just for a moment it was once again like hitting that brick wall.  I looked at the screen the words were a blur.   Seconds later we were chatting…………

 

Do I think I will benefit from the care plan?  Hell, Yes!!  The Doc took note of all the problems; e.g. carcinoid syndrome, profound hypoglycaemia, labile blood pressure,  gastrostomy feed tube (leaks), poor co-ordination, photosensitivity, hydrocortisone replacement therapy, lanreotide injections every 21 days etc. etc, etc.  And she made a note of what staff need to have available for me.   Fingers crossed Im not in anytime soon.