The changing thoughts of a steroid dependent person


A nice pretty photo to brighten your day – Denmark, WA

(Photography Sam Rose)

It’s been ages since I last blogged for a variety of reasons.  I have been working on my book which will be out for publication next month.

Plus I have been feeling utter rubbish with my health and adrenal insufficiency. Honestly, if I thought having Sjogrens was hard then I was sadly mistaken because having your adrenal glands behave so badly is ten times worse.

It was pretty much decided last year that my adrenal insufficiency was for life and not just for Christmas and after a couple of years of trying to wean off by just 0.5mg of preds every 3 months and feeling like I was going to die – twice, that it was time to call it quits.

Anyway, that is where I am at the moment, living with this horrible imposter that makes me feel rubbish for most of my day and live for my next dose of steroids.  There has to be a better way, another way or surely this is all a big fat mistake – right? Who knows, not me that’s for sure. But here is my daily diary of the thoughts that frequent my head every day without fail.

My 5mgs of preds used to last all day, but now they don’t – I have to split them up and despite what you might have read or heard, some of us absorb drugs quicker than others or just have absorption problems.

5am – Briefly aware of my hands and feet having an altered sensation, the small bones in my hands and feet hurt, the tops of my thighs hurt.  Am I awake? No I am not, I am trying to hang on to the nice dream that my adrenal symptoms are dragging me away from. I refuse to wake because life doesn’t hurt so much when you are asleep. Yes it would be prudent to wake and take my steroids but no, I won’t – let me sleep please and take your dizziness and nausea with you.

7am – I am awake, the alarm has told me it is time to get up, except that I can’t. I feel really dizzy and want to vomit and the tops of my thighs hurt with a period pain type pain. Sometimes the pain is in my lower back as well and it is sharp, but not always.

I sit up and take my 2mgs of preds and then lie back down until 7.30am, not because the steroids have worked because they haven’t by then as they take at least an hour, but because I simply cannot get up. I lie in bed and wait until I feel a bit better.

I briefly flirt with the idea of going to the gym but my leg muscles feel too weak and as I can only just get in and out of the car early in the morning, I think the leg press is out of action, don’t you?

7.30am – I am up, go me! Top Queen for getting out of bed like a champion when I feel so shit, I deserve a medal.

9am – I feel human – almost and enjoy my breakfast, actually I feel pretty good and ‘normal’ whatever that is. I have a confident walk, I can have a laugh and everything is just perfect – until someone decides to put something in the microwave that smells too strong and then my stomach wants to punish me and make me vomit.

But that is OK, I still feel normal like everyone else – except for the cooking smells, but I can ignore them.

10am – This is good, perhaps I don’t need these steroids – think I can ask the doctor to wean me off them. I hate steroids, I hate them more than Celine Dion, I hate them more than celery – I just hate them. Yes that is what I will do, I will ask my doctor to wean me off, I don’t need them and if I am strong then I can get off them – easy!

10.30am – I have been super busy, my face feels like it is being squished in a vice, my head is hurting and I have brain fog. I feel sick and if anyone puts curry in that microwave then I will cry or vomit or even both – a bit like the Exorcist.

And while you are at it, you can turn those lights out and stop talking and laughing because quite frankly it is too noisy and too bright. My muscles are starting to ache and it hurts to get off the chair. But I reckon I can still ask my doctor to wean me off the preds, even though I know I have tried before, this time it will be different.

I feel sick, who in the name of fluffy kittens is heating food up – any food, stop it and stop it right now! Does anyone have any salt or pickles? I will sell my soul for salty goodness, come on, someone must have salty goodness and no, I do not care about my blood pressure.

11am – It’s steroid time! Give me my 1mg of preds and give it to me right now. Come to Samantha you beautiful pretty little white tablet, I love you so much, how could I have ever thought of talking about you so badly and asking my doctor to wean me off you. Do you forgive me Mr Prednisone? Get.In.My.Belly!

12noon – Come on preds, do your magic and I will love you forever.

1pm – What a beautiful day, let’s go for a walk – my goodness I can march like a champ, check me out, I am normal! Who needs the preds, surely not me because I feel normal! Go me, check me out walking like a healthy thing looking all normal and showing off. Adrenal glands, you don’t rule me, I rule you so take that  and stuff it with garlic.

2.30pm – I am dying, no really I am. I am going to sleep so don’t try to stop me. Stop squishing my facial muscles, it is not funny. Shut up everyone, just shut up – don’t eat smelly food, stop teasing me with your salt and just stop everything. Did I say that I wanted to wean off the preds? Really? Are you sure? You are such a liar.

3pm – Hello Mr Prednisone, get in my belly and do your magic, how has your day been? No, I never said wean off, we are mates aren’t we?

3.30pm – Please work quickly, I am nodding off and dribbling down my own cheeks and I feel sick.

5pm – Feeling good sister! I think I can conquer the world, I am wide awake – this is brilliant. Check me out walking up and down those stairs, even when I don’t need to – purely to prove that I can. Actually, Preds – I don’t need you, I am going to ask my doctor to wean me off you because I don’t do dependency my friend so please go and find someone else to invade.

I am going to walk my dogs, work on my book, hug my husband, have a shower, make some tea and feel thankful for my health.

6pm – Don’t mind me, I am just going to fall in the bath, we can walk the dogs and watch a DVD later – I am going to ask the doctor to wean me off the preds. My husband who has been patiently waiting at home for me, nods knowingly – knowing that none of it will happen.

After a soak in the bath, I sit on the edge of the bath because my muscles are refusing to let me stand up. Perhaps I will work on the book tomorrow and just watch a DVD with my husband.

7pm – What a brilliant DVD, I can’t stop yawning this compulsive desire to yawn is taking over. Sorry I haven’t seen you today, haven’t seen the dogs – you are all so lovely and I love you so much, maybe tomorrow?

11pm – Has the DVD finished? How can that be, I only stopped for a snooze. My dogs look at me accusingly and Gordon the cat looks mortally wounded while my husband has resigned himself to that is just how it is. As for me, I feel crap and all I can think about is yes, you have guessed it – steroids.

Accusing looks from my pets

(Photography by Sam Rose)

I take my last 1mg of preds and go to bed. I promise myself that when I see my doctor, I will ask to wean off. Steroid dependency is something that happens to someone else and I am too strong to let it happen to me.

Until I realise that it HAS happened to me and how strong I must be for living this crap day in and day out. In fact, I am going to award myself the title of ‘Champion’ just to make me feel better.

Steroids – our only defense against adrenal insufficiency and the drug we love to hate, The real strength comes from acceptance and learning to cope with the condition which is something that I am still coming to grips with.

I am getting there though, slowly but surely.

Talking of which, I have 90 minutes until my last dose, but whose counting……

Samantha Rose (C) Copyright August 2017



For the Love of Books…

Peter Kay

My Peter Kay book – goes down well with a cup of tea

(Photograph by Sam Rose)

Every so often I come across someone that for whatever reason, makes a part of my day worthwhile and today was one of those days.

My husband was off today so we had been making the most of our day off and went shopping.  I had been planning on getting buying a Kindle for quite some time and today we went in to one shop to have a look as I had seen them advertised there for $110.

As we went to the section where the Kindles were, a young guy asked if he could help us, he looked a bit geeky and had a huge friendly grin and gave us a warm welcome.

‘Can you help me with buying a Kindle please?’ I smiled at him, it was hard not to you see – smile at him, he just radiated something that I could not quite put my finger on.

‘I love actual books personally and have a huge collection’ He said in a fretful voice to nobody in particular – almost as though each Kindle he sold would destroy the lives of the precious paperbacks (who knows, that might happen).

I laughed and agreed that there is nothing like holding a book in your hands, the touch and the smell and losing yourself in the work that someone else has poured their heart, life, soul and imagination in to.

‘You like books too?’ He gasped as though he had come across the key to the ‘secret club’ and then checking to see that no-one was watching, he pulled his phone from his pocket and showed me a picture of his home ‘library’ which I will have to admit, was bloody impressive.

We both stood there and admired the pictures of books neatly organised in Author order, standing to attention waiting for someone to grab them off the shelf and enter their secret world.

‘My God that is awesome, you have heaps of them’ I gasped enviably and felt quite embarrassed at my somewhat poor in comparison pile of books on my bookshelf.

‘And that is just on my book case, you haven’t seen what is on my floor’ He nodded proudly causing my husband to laugh. It was like I had unlocked the key to something but I don’t quite know what, because this guy suddenly became animated and had stepped out of his sales assistant role.

I told him how cheap it is to order second hand books from Amazon UK and even with shipping, still beats the books in the charity shops and how I am currently reading a book on criminal psychology.

‘Oh my God I LOVE stuff like that’ he said looking like he was going to burst and then went on to tell me he loves to imagine what life would be like living centuries ago as in some of the books he has read.

‘I have a book about Jack the Ripper – I haven’t read it yet though.  I would have loved to have taken a peak into those times’ I told him, he nodded happily in agreement.

I explained to him that Facebook has destroyed my ability to focus and read a book and how I was trying to cut down on how much time I spend on social media.

‘I don’t have Facebook or social media’ He said firmly.  I will admit to staring at him as though he had two heads – or even three, I mean NO social media????

He went on to say that for every hour he could spend on Facebook he could be learning something constructive, like last week he learned to make excellent coffee and next week he would learn something else so why waste all that time on Facebook when he could be doing things to better himself? He had a good point, a very good point.

I mentioned that I am writing a book and was on the second draft, I didn’t dare tell him what it was about though – that would just be embarrassing, I mean how can you describe a world of talking dogs that have adult social lives and drink dog beer?  That takes a special person to understand that not to mention a certain sense of humour to ‘get it’.

Meanwhile customers were asking us if we could move as we were blocking their way and I still didn’t have my Kindle – but that didn’t matter because this guy was far more interesting than any Kindle I could have bought or any book I could have read.

‘I wish that I could find a book club local to me’ I said wistfully.  I secretly wondered if he was in a book club of some sort, but saying; that he had so many books that he could probably run his own book club and I most certainly would have liked to become a member of it as well.

Never have I seen someone so young have such a passion for books and reading.  All I will say is that wherever that guy will end up working, I hope it is doing something that makes his face light up like it did today.

After searching in various places, he told us that the Kindle we wanted was sold out and then offered to knock some money off the next (more expensive) model (with a back light which I don’t need – or perhaps I do as my eyesight is crap).

I didn’t take him up on the offer but we thanked him for his help and went somewhere else where it was on sale for $90 and I managed to get a protective case for $24 which was a bargain and you can’t beat a good bargain.

My books are now all downloaded on to my Kindle which is in its new case and is charging in the bedroom and is almost good to go. It takes a bit of getting used to not having a back light but as each time I read a book on my phone I end up on Facebook or chatting on my phone which I am trying to cut down on, that can only be a good thing.

But how glad I was to have met someone like him, a young guy (student?) and obviously very creative. To witness someone become so passionate and animated about something was love was comparable to taking a brief step into their world.

When my book is published I shall go back to the store and drop him off a copy, he may read it, he may not but just to have a place on that book shelf of his would be quite a privilege.

As for my Kindle, well it is nice and all that and modern technology has allowed me to store hundreds of books on to one device which I can carry with me without the weight of actual books.

But if I am honest, if I am really honest, there is nothing like the beautifully designed cover of an actual book, with the promise of a whole new world inside it where the characters are waiting to show you what is happening once you turn that first page.

I love books, the smell of them, the feel of them and especially how something so small can be so powerful to the imagination.

Whether or not Kindle will eventually replace actual books remains to be seen but as long as there are people like the sales assistant I met today, there will always be a secret library somewhere in the world.

Samantha Rose (C) Copyright May 2017

Quite Simply – Menopause


Just because the sun sets on one stage in our lives, it will always rise in another

(Photograph by Sam Rose)

There, I have said it – the very word that many women deny all involvement with or are embarrassed to even say, preferring the words ‘I am at that time of life’ or ‘a lady of a certain age’ but very few will say ‘Hey sweetie, I am in the menopause – let’s have an ovary party and celebrate the retirement of my reproductive organs’

I wonder if there is there an element of embarrassment associated with this time of a woman’s life?  Has society got some unwritten rule that it should not be discussed and to do so is like admitting that you are on the slippery slope down to old age, incontinence, big knickers and genitals like Wallace and Gromit’s mouth (letter box).

I recall once having a discussion about menopause (you know, just women’s talk) with a lady who I shall refer to as ‘Ethel’ in her mid 50s and she said to me in a guarded voice ‘Oh no, I am not there yet, nowhere near it in fact – years away’, then she nodded several times for good measure and self reassurance.

It was said with such ferocity and passion that I could imagine her as an 80 year old lady in a nursing home claiming that her ovaries still have the fertility capability of a nubile 20 year old while saying ‘Still a long way off yet, no menopause for me yet dear’.

Or perhaps when she has passed on, it will be on her grave stone ‘Ethel, died aged 100 years old but by God her ovaries went to the grave good as new’

Tales of Horror…

I am not going to lie though, the stories that I have heard about menopause have been pretty scary.  Things like light bladder weakness (LBL) and peeing yourself if you cough, laugh or don’t get to a toilet straight away are somewhat alarming.

Have you seen adverts showing pads for LBL that omit a pleasant perfumed odour if you ‘leak’, well who in the name of God invented those?  Imagine people get to recognise the perfume that is secreted on these pads and the minute they smell it, they point at you and yell ‘Oh my god, she has pissed herself!’  You may as well put a high viz vest on saying ‘LBL’.

Claims that pelvic floor exercises are next to Godliness obviously have some truth in it and up until now I have never paid much attention to it and why would I?  Clenching myself for counts of ten at bus stops have never been on my agenda, mind you I never get the bus so I suppose I could do it in Coles supermarket with the end result being a pelvic floor you could crack coconuts with.  Now that is something to aim for (cracking coconuts I mean and not urinating yourself).

Hot flushes, mood swings, weight gain – come on ladies, we know the score and have read all about the symptoms.  We have all heard about the Pandoras box of hormones that Mother Nature chucks at us when our time of life is nearing so let’s talk about it and those that don’t like it can turn around and put their fingers in their ears the way they do when Trump gives a speech or poverty adverts come on TV.

The Puzzle that is my Body

If you have read my previous blogs you will know that I have an auto immune disease and adrenal insufficiency.  My fight or flight hormones are not as they should be and sometimes I think that my hormones are having a party and I am not invited but that’s adrenals for you, they are a bit naughty like that.

Anyway, the other month I had my hormones checked for menopause because at 49 years old, surely it has to be on the way, I mean really it must.  My last test was negative and I was in the ‘Who me? I am nowhere near it, years away club’ because at that time I wasn’t anywhere near it and I wasn’t in that famous Egyptian river of ‘denial’ either – I still had the hormones of a non menopausal woman.

But this time I went to get my results from my doctor and I sat patiently waiting for her to read them to me.

She frowned at the results and said ‘You are in Peri-menopause, have you noticed any symptoms?’

Feeling a mixture of shock and ‘where the fuck has my youth gone?’ plus a good measure of happiness and ‘Yee ha, does this mean I am a grown up?’, I told her that no, I hadn’t had any symptoms and I certainly wasn’t peeing myself when I coughed/sneezed or sweating like joint of gammon in a butchers window.

‘Well you are there, your results show you are definitely in it (Peri-menopause)’. She confirmed and then as quickly as you like, she changed the subject on to something else leaving me wondering where my certificate of congratulations was.

Congratulations – I think….

After my consultation, I decided that after that news I should celebrate with a bacon roll and a lovely healthy can of coke plus a bag of chocolate covered peanuts (yes I know, crap food and all that stuff – not one gram of toss was given that day about that).

Nothing can prepare you for how you might feel for being told you are starting menopause.  It’s a normal healthy part of being a woman – even if the symptoms can be awful.  Suddenly you have left the ‘No not me, I’ve got years ahead of me yet’ club, and you have entered the ‘Shit, it’s actually happening’ club.

Whilst munching on my bacon roll, I digested the news and wondered how in the name of fluffy kittens did I not know such a significant process was taking place in my body? I mean really, how. did. I. not. know?

I had plans in my mind that when it happened, I would be greeted with some hot flushes and night sweats that would take the top off my head and blow steam out of my ears and nose while my face went bright red and hot enough to fry an egg on.

I had plans that I would be on the phone to my sister discussing my hot flushes and minge problems in true girly fashion and had I been living in the UK, we could have done that over a glass of wine or three and chocolate coated peanuts.  There are baby showers, hens parties so why not menopause parties, we could have a cake in the shape of a lady-garden and everyone could bless it or something.

And really, why should it not be celebrated when we have gone through so much to get that title of ‘Peri-menopausal’?

Because I actually believe that it should come with a ‘certificate of achievement’ and a trophy to make up for the years of periods, period pain, PMS, plus the vast amount of money spent on sanitary protection and painkillers, not to mention the hassles of birth control and a week of hating anything with penis.

I had plans that I would have sensible and respectable chats with other women at the same stage of life as myself, we could discuss and compare symptoms over a Chai Latte and a custard cream biscuit.  But most of all I had plans that I would know that it was happening, like a gentle tap on the shoulder and the ‘Menopause Fairy’ saying ‘Samantha, it is time – welcome to Peri-Menopause, take my hand and I shall show you the way’.

But no, not even a ‘Catch ya later flappy vag, Estrogen is now leaving the building! Hope you enjoyed the ovarian cyst we gave you last year bitch, enjoy the hot flushes when they arrive and god bless your lady garden because it’s sure gonna need it!’  Nothing, not a thing, no warning – I mean how disrespectful!

It was like some secret hormonal party was taking place in my body and until the doctor told me, I had not been privy to any part of it.  Any hopes that I had of that magical moment of realising something different was happening to me, had been cruelly dashed because I genuinely did not have a clue.

In fact I reckon my ovaries have blindfolded me in the night, kidnapped me and let me out in planet menopause wondering where the hell I am and how did I get there – like Back to the Future with Marty McFly but no chance of turning the clock back.

It was with some elation that I drove back to work that morning, once it had sunk in that is.  Because my body cannot do anything normally, I can’t get coughs or colds because of my overactive immune system.  Even my periods have never really been normal and only lasted 3 or 4 days if that and sometimes they never rocked up at all but then again, adrenal insufficiency can play a nice game of ‘hide and seek’ with your menstrual cycle so I have discovered.

So this news was actually very good to hear because for the first time in a long time, I was normal and that actually feels quite good.

On the way back to the office I sat waiting at the traffic lights in my car, blasting out ‘Rebel Yell’ and feeling very ‘rock chick’. I scoffed the rest of those damned chocolate peanuts like a starving person and rebelliously took swigs of coke from the bottle while waiting for the green light.  It was at that moment that I decided that I was more than entitled to my very own mid life crisis, but what form that will take remains to be seen as I am still planning that one.

At home

‘How did your appointment go?’ My husband asked me when I got home from work.

‘Great, I have started menopause!’ I beamed at him and then quite suddenly felt like a grown up for saying it out loud – did this mean I had to start acting like one?

‘Since when?’ husband asked looking surprised.

‘Doctor said judging by my hormone results it must have been a while, so I don’t know’ I shrugged my shoulders and poured myself a glass of wine.

‘How come you didn’t know? I thought all women knew this stuff?’ he asked.

‘I don’t know but I plan to call my sisters and discuss my hot flushes with them and talk about menopause symptoms’ I told him and then gulped my wine down rather too quickly because I was still thirsty from the bacon roll and the chocolate peanuts.

‘But you haven’t had any hot flushes or symptoms’ my husband started to say.

‘They are coming, I don’t know when but I have heard most women get them and I should think mine are on their way and then I will blow steam out of my ears and nose’ I said knowingly.  Like I would know, my hormones never tell me anything the bastards – but that is how I imagine it to be like and I am sure it will be.

Later that night

I stared at my reflection in the mirror from different angles wondering if I had changed, surely something like this happening means that you notice changes.  Shouldn’t the lady-garden suddenly look like a wizened prune or something, or grow a grey goatee beard just like Billy Connolly’s?

Or would it wear a pair of horn-rimmed old ladies spectacles and look at me with a newly acquired look of disapproval if I didn’t act my age.  But no, I still looked the same and there was no grey goatee panty beard, no horn rimmed glasses and no disapproving looks -nothing at all.


Well now I am officially in the Peri-menopause club, I shall at some point be discussing the hot flushes (when they start) with my sisters over the phone with a glass of wine and lets not forget those chocolate peanuts because I can wholly recommend stuffing a bag of those babies down in celebration when you get this kind of news.

How do I feel? I feel kind of mature, a bit like a grown up that has risen above any childish antics.  I have a kind of peaceful serenity about me to the point I may go and start listening to Cliff Richard and bake muffins (and if you believe that, you believe anything!)

Now if you will excuse me, I have to go and work on the book that I am writing about dogs that talk, do childish things and have social lives.

Peri-menopause – now wearing that badge and totally owning it.

Samantha Rose (C) Copyright October 2016

Useful Links

Menopause Support

Red Hot Mamas

Cliff Richard songs – in a crisis only Cliff will do

Chocolate covered peanuts – your life saver

God love Billy Connolly



Kicking the Butt of Cancer


My Dad (right) – taken at his favorite Italian restaurant he visited when he came to Perth

(Photograph by Samantha Rose)

*This update is told with the permission and blessing from my Dad and this is his story as he told it to me.

It was written in January 2015 when Dad was given the ‘all-clear’ from his prostate cancer.  I have chosen to publish his story one year later in the hope that it might help other men in this situation*.

As you may or may not know, in 2014 my Dad was diagnosed with Prostate cancer and thanks to the vigilance of his doctor and Dad not being afraid to have the relevant tests – it was caught in good time.

But please don’t think that for a man having prostate cancer is any less traumatic than other cancers because the treatment for this disease is exceptionally hard and anyone that has had radiotherapy can testify as such, not to mention the medication you have to take and the havoc it can wreak on your body and emotional well-being.

Dad told me that it is about time that more stories like his were told to give hope to others that have been diagnosed with cancer and like he was, are feeling overwhelmed with their diagnosis and the prospect of what lies ahead of them. In particular – prostate cancer, which so many men are too embarrassed to discuss let alone get checked for.

Anyway Dad called me tonight to tell me about his hospital visit to the cancer specialist on Friday and how the news was broken to him about the results of his prostate cancer.

My sister Terri had gone along with him to his appointment and Dad said the Doctor read his blood results and had a big grin on his face and Dad wondered why he (the doctor) was smiling.

He didn’t have to wait long to find out, he advised my Dad that his prostate PSA levels were barely traceable and that he had never seen them so low and that Dad does not have to go back for a year.

Dad said that the Doctor looked so pleased with giving this news, you can imagine that doctors give bad news all the time so this must have made his day.

Both he and my sister hugged each other when they left – oblivious to those around them, simply unable to believe the news that they had just been told. They quickly then told my other sister Julie (you can call her Me Julie and she has a fetish for firemen).

They made their way to the pub where Dad’s friends were there and the news was told and Dad said that people were congratulating him, some of them he knew, some he didn’t.

Someone bought him a bottle of champagne to celebrate and glasses were filled to raise a toast. Because what could be more fitting to raising a toast than to kicking cancers butt?

As everyone raised their glass, Dad told me that he picked up his glass and said quite suddenly and loudly ‘Fuck Cancer’ and one by one everyone raised their glass and repeated it so you could hear ‘Fuck Cancer’ being repeated several times at the bar.

Dad said he couldn’t stop smiling and he admitted to me on the phone tonight that he was still smiling and not quite believing the news.

He also emphasized that the moral of this update is to show that sometimes, just sometimes you can beat something that initially overwhelms you.

Prostate cancer is treatable – but you have to catch it in time. So many men have symptoms that they ignore and a simple blood test and check up can detect things early enough so that treatment can be started. The trouble is guys, embarrassment can literally be your worst enemy.

I will say that Dad has been through a tough time with his treatment and I remember him saying that it was the thought of having cancer in his body that really upset him – just the mere thought of it being there.

He came through the radiotherapy which was not pleasant, he is still on the medication which is also not pleasant but said that he doesn’t care ‘providing the cancer has gone’ because he is at a stage now where he could not have imagined being at 12 months ago.

Cancer is a bastard of a disease, it is a thief, an intruder, a heart-breaker and it does not deserve the power that it has and we need these ‘butt kicking’ stories.

So I want to dedicate this to my Dad and also to anyone that is going through this (or any kind of cancer).

‘Daddy Stocken Kicked Cancers Butt’ My Dad said to me on the phone tonight and you certainly did that Dad, and we are so proud of you.



*Update for January 2016*

I am pleased to say that Dad remains free of cancer and is doing very well and we are all so very proud of him.

Love you Dad xx

Samantha Rose (C) Copyright Jan 2016

The funny side of adrenal insufficiency

Always look on the bright side of life (or your adrenals)


Araluen Botanical Gardens Photograph by Sam Rose

‘What?’ I hear you say, ‘You mean to tell me that there is a funny side to this horrible disease?’  Well let me tell you now, if I don’t see my own funny side; I shall be driven to curling up in a ball and chatting to my own adrenal glands to beg them for mercy – whoever ‘Mercy’ may be.

This blog is to try and find some humour out of what is happening to me and who knows, if it helps you find some humour for yourself then it won’t have been in vain.  All of the following stories are true and have been said to me but descriptions have been changed to protect the innocent and in some cases – daft.

Are you drunk Samantha?

I am not a big drinker, don’t get me wrong I used to be a party girl but now one glass of wine and I am tipsy so one glass is where I tend to stop.

However, when I get low on cortisol one of the most noticeable symptoms is slow speech and an inability to ‘problem solve’ or string a coherent sentence together.  The lower my cortisol gets, the more confused I get and the slower my speech gets.

‘Oh my god, you sound drunk, have you been drinking?’ someone asked me the other week.

Was there any point in saying no that I had not been drinking?  Probably not but I tried anyway and stumbled and fumbled around in my own mind to sort out the words I would need to in order to form that sentence.

The trouble is with low cortisol, you can’t find the right words when you need them so you have to improvise without sounding more confused than you already do.  It’s a bit like Scrabble really, only it’s ‘Scrabble inside your head’ and you rarely win the game.

‘Are you? are you drunk?’ the person repeated.

‘No I am not’ I replied, at least that is what I think I said but it may well have come out as ‘No drunk not, I am’ or some equal pile of mixed up words.  But never mind, the right words were probably there, just in the wrong order so who’s arguing? Not me that’s for sure.

Phoning the health direct line for medical advice

Now that is a laugh a minute let me tell you.  I had to call them the other week as I was very unwell after my synacthen test and could barely get off the sofa.  I do need to emphasize that it was not a 000 call to go to ED but I did need sound medical advice and quickly.  I had started off with the number to call a doctor out who then referred me to the health direct number.

I was put through to a very nice nurse who took all of my details down and decided what to do from there.

I gave her the run down and what happened and told her that I felt weak, shaky, dizzy, tummy cramps and had not pulled myself together since my synacthen test the other day and did I need to take extra steroids as I wasn’t quite sure what to do (Endo didn’t want me just stress dosing for anything which is fair enough).

‘Do you have a droopy face?’ the nurse asked on the other end (she was following protocol and going through the check list so I am in no way berating her for it as she was very nice).

I pondered for a moment, did I have a droopy face?  I don’t know, some days I wake up looking like a well bred boxer but wasn’t sure about droopy.  Grabbing my jowls and trying to tug them down, I tried to work out if I was droopy – I wasn’t.

‘No I haven’t got a droopy face’ I replied, ‘I have adrenal insufficiency and all I need to know is do I stress dose?’

‘Do you have chest pain?’ the nurse asked.

‘No, I don’t have chest pain’ I replied patiently – with my slow speech that probably made her want to ask me about my (non) droopy face again.

‘Have you been drinking?’ the nurse asked.

Resisting the urge to tell her that I had quaffed a cup of Yorkshire Tea in the morning but secretly pretended that it was brandy, I sighed ‘No, I have not been drinking’.

‘Please, can you just advise me what to do and if I need to stress dose as I feel very weak and shaky and I can’t really go far from the sofa, that is all I need to know’ I said to her.

‘Do you have left sided weakness?’ the nurse persisted as she went through the check list.

‘No, I am weak all over’ I said fretfully.

‘Do you have any pains in your head?’ she asked.

Now I had pains in many places but thought it best not to go there.

Anyway, the questions continued and I answered as best as I could and once the nurse had finished she entered the information on the computer for a few seconds while I patiently waited.

‘Right, the results say that you should consult your doctor within 12 hours’ she said firmly, ‘Can you make an appointment tomorrow morning?’

‘It is Sunday tomorrow, my GP is closed’ I sighed.  Sweet mother of god I was going to cry, except that I didn’t have the energy and I don’t produce tears as I have Sjogrens syndrome.

‘There might be an emergency doctor open near you now’ the nurse suggested.

‘I can’t drive, it’s 10pm at night and I seriously can’t get off the sofa, can you check with someone if I need to stress dose?’ I pleaded.

‘I am sorry I can’t answer that but the computer said you need to see a doctor within 12 hours so you could try the surgeries near you tomorrow, I can give you a list if you like’ the nurse suggested in a hopeful voice.

Having visions of the UK comedy program ‘Little Britain’, I could imagine her saying ‘Computer says no’.  I stopped myself from laughing and just replied that yes I would go to the doctor tomorrow and then secretly wondered if it would be safer to take a steroid now or just become all religious and pray that my adrenal glands would behave and hold out for my morning dose.

Anyway, I could not leave the sofa and that was where I remained until my husband got home and I was able to go to bed to ponder on if I had a droopy face or not and whether I should make a suggestion to Health Direct to include adrenal insufficiency on their check list.

Girls’ stuff – please skip this bit if you are an easily embarrassed male

Sometimes, just sometimes with adrenal insufficiency we ladies get issues ‘down there’ and require cream to make it better.

I walked into the chemist a couple of weeks ago to ask for some special cream and the chemist lady did not speak very good English.

‘Do you have this cream?’ I asked her and then said the name of the product.

The lady looked confused and then nodded firmly and led me to one section and after a few seconds of hunting around and running her finger alongside each shelf, she grabbed a box and triumphantly held it up.

‘Here you are, this should help’ she nodded and showed me a packet of mosquito repellent wipes.

Not knowing whether to laugh or cry, or call Health Direct for the suggested assault on my ‘lady-garden’, I spluttered ‘Are you serious?  that isn’t it, this is the cream I need’ and I repeated the name again.

‘This will fix it’ she repeated and tried to hand me the 90% DEET repellent wipes.

By now I was horrified and had even began to doubt myself and stared again at the wipes and wondered if there was some miracle ingredient in the wipes that could help ‘down below’.

‘I don’t get mosquito bites down there thank you, don’t worry, I shall try somewhere else’ I muttered. Thanking her for her help, I left her standing there clutching the wipes wondering where it had all gone wrong.

My ‘lady-garden’ had a lucky escape, I mean those bastards would have taken the skin off – can you imagine that, I mean CAN YOU IMAGINE!!!!!

I left with no cream and then ventured into the next pharmacy with high hopes that someone would be able to help me without trying to burn my vagina off with DEET.

The next pharmacy

‘Hello, can I help you?’ the assistant asked.

‘Yes, do you have this cream?’ I whispered to her discreetly, using my finest Queens English accent.

Set the scene – the chemist was busy, like packed busy – full of people type of busy and the word of the day was not discretion.  An old lady that was asking for everything to be repeated to her, suddenly found her hearing when she heard the word ‘thrush’.

‘Oh if it is for thrush and all that kind of stuff, then it is over there!’ she said loudly and then demonstrated to the aisle that virtually screamed ‘female embarrassment’ in a loud voice.

I found what I wanted and sloped off to the checkout and spotting some Glucogel lollies in a bag by the check out, I threw some into my basket with the cream and waited my turn to pay.

The assistant lifted up the box of cream and studied it briefly, I was almost tempted to ask her if she had tried it before but thought better of it.  Besides, I was starting to feel hypoglycemic and was staring at my back of Glucogel like a starving person because if I didn’t get some in my belly soon I would start sweating like Tony Abbott in a parliamentary debate.

And that brings me to my next issue – blood sugar.

Why don’t you have a banana……

I swear to god if anyone else suggests me eating a banana I am going to go into banana rage and smack them round the face with it and place the skin on their head like a yellow octopus.

Like many people with this disease, I suffer from blood sugar issues and without feeling any hunger or without any warning, I can go hypoglycemic very quickly.  I have to carry glucose tablets in my car and frequently have to eat a few before doing certain activities.

‘Why don’t you have a banana?’ someone asked me one day, ‘It’s far better for you’.

My answer to that is that Glucogel lollies shove my sugar levels up far quicker than a banana.

Besides, bananas tend to go brown and mouldy in the car and can’t be kept in the glove compartment for emergencies and if I am going to go hypo then you can keep your bananas, I want Glucogel and lots of them.

You do know that salt is bad for you right….

No, really?  I never knew that.

‘Oh my god, don’t you put a lot of salt on your food’ people have said to me.

Salt to me is like Danny and Sandy from the movie ‘Grease’ – we just ‘go’ together and at certain times of the day, salt is my best friend.

I have been in cafes where I have poured salt on my food and have had shocked looks from people which makes me want to pour even more salt and make a salt mountain on my food and stick a flag in the top of it saying that I have climbed it and survived to tell the tale.

So when you ask me if I know that salt is bad for me, please forgive me if I turn the entire salt dispenser up in the air and pour it directly in my mouth just to prove a point, although I may just vomit afterwards to spite myself.

Nose like a beagle dog

I am convinced that I have the scenting abilities of a beagle as my sense of smell is so hypersensitive.  I am quite surprised that HM Customs haven’t contacted me to sniff bags at Perth airport, no really they should consider me as I would be very good and would not be averse to wearing a dog harness to do it.

This smell sensitivity can pose a problem with certain types of food as I clutch my nose and try not to gag because someone at work is heating up their lunch.  It is very hard to smile and talk to people when you are holding your breath and trying to convince yourself that their food is not toxic and that chicken and broccoli is a nice healthy lunch and not the poison that your snout thinks it is.

I have been known to hold my breath for a considerable time to get away from people eating their food so that I don’t have to smell it while inwardly wishing that I could catch a bad cold so that my nose would block up and I wouldn’t find their curry/broccoli/lasagna quite so offensive.

We have gone to war, no really we have, I am sure of it

Whilst other people ignore the sound of a plane flying over the house or enjoy the loud sounds of a war movie, my body in fact thinks it is going to war and my adrenal glands yell out ‘we are all going to die – right now!’

‘Can you turn the TV down?’ I plead with my husband who has the volume turned down to the point he can barely hear it.  But I can hear it and those guns and bombs are gonna kill us, my adrenals say so and they don’t lie – do they?

We had a fire drill at work the other week and my head knew it wasn’t real but once again my adrenals decided to be naughty and misbehave and convince my body that we had gone to war with the Martians, which of course took me a couple of days to recover from it.

This is a huge worry for me as my body thinks it is constantly under attack and I am wondering if I should dress up as a soldier when I go out so that I am prepared for battle.

Can you imagine that happening in a shop, a fire alarm goes off and everyone is calm as you like and I am wearing army greens while yelling ‘Save yourselves and your families!’  It’s not funny really, well I guess it could be if I ended up hiding under the ‘feminine hygiene’ section of the pharmacy taking shelter next to ‘those special creams for ladies’.

You have joined the Nana club

I have turned down or cancelled so many plans because I have used up all my spoons (The Spoon Theory) and not just used up my spoons, but probably taken some out of the cupboard in a desperate bid to make it until the end of the day.

I don’t like myself for it either and mentally tell myself off for falling asleep on the sofa while my friends are out living their life and I sleep away mine.

Plans can change on the very morning that they are mean to happen.  It starts off with a battle between my mind and my sofa and goes something like this:

‘Come on Samantha, let’s get going so we can drive to the park’ I say to myself.

The sofa is winking at me in all of its leathery goodness ‘Come on sweetie, just imagine yourself lying on me with that blanket on you.  You don’t need the park, you need me and you know it’. (if sofas could talk, that is what mine would say)

I find with adrenal insufficiency that my day technically ends when my steroid dose runs out and that I seem to metabolize it very quickly so when my sofa asks me to lie down, it is because it has cruelly collaborated with my adrenal glands and that is the decision they have come up with.

Sofa Vs a trip to the park – Sofa wins the battle and I become a Nana, those adrenal glands are so manipulative.

The trials and tribulations of Pilates and adrenal insufficiency

Yes, I said that the word ‘Pilates’ and adrenal insufficiency in the same sentence.

This poses a real trial for me because I start to get low on steroids at around 6.30pm which is when Pilates starts.

Don’t get me wrong, I manage to do some of it but after about 30 mins my ‘slow button’ comes on, my speech becomes slurred, I feel dizzy and the prospect of touching my toes usually ends up with me needing to lie down on the floor while the other girls show off in their Lycra and tie their legs in knots and bows and stuff while I try and make lying down on the ground fashionable.

I usually leave the studio with shaking legs and tremors, flushed cheeks, racing heart and hair like a lavatory brush but hey, I have Lycra on and anything is possible with Lycra because you can fool yourself into thinking that you are fit purely by wearing it.

Oh I had adrenal fatigue once and I recovered…

Did you, I am so pleased for you but I do not have adrenal fatigue, my adrenals are insufficient. They are not tired, they are not taking a break from all the hard work that they are meant to do and they are not lazy.

They are just slowly reducing in function and the end result is that I am not producing enough cortisol for survival and without my oral steroids I will eventually die and it won’t be a pretty sight either – a bit like Cliff Richard in his leather pants, that isn’t pretty either but let’s not go there.

There is no supplement that substitutes oral steroid tablets and whilst I am not being ungrateful at the suggestion, I have to emphasize that I do not have adrenal fatigue, my adrenals are in a very poor state and the word ‘fatigue’ doesn’t even come into play.

I only wish that I could have a word with them and ask them nicely if they could play the game and stop messing up my life quite so much – temperamental little devils that they are.

I have never heard of that symptom before….

And finally I feel that I have to address this issue and that is where some doctors/nurses claim that because they have never heard of a particular symptom before, you cannot possibly be suffering from it.

A nurse once said to me ‘I have never heard that steroids can cause mood swings, that is not what I learned at Uni’

Looking at her as though she had grown two brains (well one brain would be nice), I decided to not argue as there would really be no point but secretly I wanted to rock back and forth and fear for the future of all adrenal/cushings patients and anyone on steroids that might be in her care.

Some of the adrenal insufficiency symptoms that I suffer from (to name but a few)

  • Salt cravings
  • Vibrating in feet
  • Painful feet – feels like someone is hitting them with a hammer while doing the River Dance on them.
  • Dizziness
  • Nausea
  • Anxiety/on edge
  • Sugar cravings

Some of these symptoms do appear to be recognized by the medical profession but trying to rationalize some of them to other people is like trying to polish a turd and where does that leave us as patients?

I think what scares me most about this attitude is that if the treatment, understanding and belief of our disease begins and ends with what doctors and nurses have learned at university/medical school then I believe that our future is not only uncertain, but quite terrifying.

Anyway, that is all from me for tonight, now if you will excuse me, I am going to take my slow self and go to bed like the Nana that I am with my trusty steroid bottle that I shall place beside the bed ready to greet me (and my droopy face) in the morning.

Samantha Rose (C) Copyright Sept 2015

Cats in ‘The Hood’ and Gordon isn’t happy


Gordon says ‘Get off my land’ (in a Devonshire accent)

Taking the piss (literally)

As many of you know I have a 13 year old cat called Gordon whom I bought with me from the UK.  Gordon has always been an indoor cat and one would think that in the privacy and safety of his own home, should never and would never have to defend his territory.

Until now that is.

There is a large male cat in our street, I think he is owned or perhaps was once owned or maybe he is just a ‘free-range’ pain in the arse cat.

He has testicles like two tangerines in a handkerchief and a seemingly endless supply of cat piss that he enjoys spreading on my front door.  Cat piss that is so potent that within seconds of him doing it I can even smell its ‘warmth’ as it infiltrates my door and fills up my house with his scent.

It started off with him doing it the odd time a bit like feline graffiti spreading his art all over the door occasionally to be admired by other cats that may say ‘Nice piss mate’.

My cat Gordon likes to sit at his window and why wouldn’t he?  His home is his castle and he has never had to defend it against outside cats in leather jackets that threaten with menace.

In case you don’t believe that cats can talk and wear leather jackets, I am telling you that they do and they also talk very well.  Entire male cats for instance will always wear leather jackets and talk in tough accents – actually I think that all animals can talk if only we choose to listen to them.

Anyway, this rogue cat that I have named Kevin, is a right toughie.  He has a huge face, is built like a brick with attitude and he walks around our street like he owns it.

He wears a studded leather jacket and is a member of some gang – his own gang containing only him and his testicles and I think he would actually beat me up if I got too close to him.

Kevin frequently gets in to my garden and my dog Brutus has nearly pulled him off the fence by his tail on a couple of occasions as Brutus does not tolerate cats in his garden.


Brutus – no cats in his garden!

One time Kevin the cat told Brutus to ‘Piss off’ and threatened to rip his head off and crap down his neck and also threatened Rocky that he would chop his legs off and spit-roast him with potatoes.


Rocky on a spit-roast

So you must understand that Kevin is a hard nut but I thought somewhat naively that if we ignored him pissing up my door that he would eventually tire of such naughtiness and leave us alone and perhaps piss on someone elses door instead and oh how wrong I was.

This is my ‘hood’

My Gordon enjoys sitting at the door or the window and watching the world go by.  He is 13 years old and is an old man that sits in his rocking chair at the window with his half rimmed spectacles, doing the crossword and says ‘hello’ to anyone that goes by.  It is his pleasure, it is what he looks forward to and he does no harm to anyone as he is in his own house.


Gordons home is his castle

Well more recently (like every night) Kevin the cat has taken to flashing his anus up at our window and calling my Gordon a ‘ginger bastard’ and then taking spraying up my door and from what Gordon tells me, he can do all of this while doing cartwheels.

‘This is MY hood you ginger bastard and I am gonna get you out of this house and take it over’ Kevin sneered at Gordon one night.  I heard it with my own ears and smelt it with my own nose and I swear to god that cat can use his rear end as a pen judging by the shapes of cat pee on my door.

Cats hate citrus – yeah right

‘I am fed up with cleaning up after this cat and the house stinking of tom cat’ I moaned to my husband at the weekend after cleaning the door yet again.

‘I don’t know what we can do to be honest’ Hubby replied in a resigned voice.  He was  scared of Kevin in his leather jacket and his big fat tom cat face and testicles like space hoppers.

But no way would I give up and I would not give in; I frantically started to check the cupboards for stuff I could put on the door that would deter this big bully cat from stinking my house out yet again.

After checking the cupboards, I found some citrus cat deterrent spray that we bought last year when Kevin first started spraying.  ‘Ah ha!’ I said triumphantly, ‘This should fix the little bastard’.

My husband shook his head despondently and took a swig of his tea and carried on watching TV.  He had given up hope, Rocky had given up hope, Brutus had given up hope and so had Gordon.  But not me, no way no never – there ain’t no Tom cat going to launch a hostile takeover of my house with his urine.

I washed the door with detergent first and then I saturated it with the citrus spray and even sprayed the trees and the foot mat outside as well.  It was bound to work, surely?  I would like to tell you that, honestly I would but I would be lying because it didn’t.

‘Citrus shitmus’ Kevin the cat hissed at Gordon through the window, ‘Reckon that will stop me?’ and then did a ‘flash of bum’ on my freshly cleaned and sprayed door and took another piss down it and not only diluted my precious citrus spray but covered it completely until the familiar ‘warm’ smell filled up my living room.  I mean good God, where was all this urine coming from, did he have two bladders or something?

The war is on!

Tonight I was watching ‘Neighbours’ on TV when quite suddenly I could smell cat piss.  ‘Mum, he has done it again!’ Gordon yelled to me from the dining room.

Jumping up out of my chair I ran to the door and opened it in time to see Kevin in his leather jacket run off down the garden while shouting ‘Catch me if you can!’ with his testicles bouncing after him like hungry puppies chasing their mum.

Well I used every single cleaning product that I have in the house plus some citrus cat repellent that SO does not work, some Glen 20 plus some other stinky chemical cleaner.

In the end I got so desperate I considered spraying my new perfume ‘Beyonce – Heat’ that I got for my birthday that makes me sneeze.  Perhaps a dose of her perfume might make this cat sneeze but knowing Kevin he will probably like that as well.

‘Just you wait! I shall find a way to stop you’ I yelled to Kevin who was smoking a cigarette from behind a tree and making ‘cut-throat’ gestures to me.

‘You reckon?’ Kevin laughed and promptly showed me his testicles in an act of defiance.

‘Mum? He won’t take over my house will he?’ Gordon asked me as I glared at Kevin through the window.

‘Over my dead body’ I snapped and reassured my elderly ginger cat as he sat by the window.

‘That can be arranged’ Kevin smirked from the other side.

A few hours later

‘I saw that cat Kevin this arvo, he was wearing a leather jacket walking round like he owned the place’ My husband said to me this evening when I told him about tonights little incident.

‘He does own the place’ I replied flatly, ‘Watch him though, he carries weapons in the form of teeth, claws, attitude and testicles’.

Plan of action

With the door clean (for now), I am planning my next strategy and went on to the Bunnings website to look at an ultrasonic cat repellent.  We probably cant try that though as it will upset Gordon.

I also found some citrus spray that is meant to deter cats which we all know that is rubbish as Kevin is hard core and will probably drink it, bathe in it and cook his mice in it.  I am now thinking of getting some lion turd from Perth zoo because that might make Kevin believe that there is a bigger and tougher cat than him in the ‘hood’.

Or I could just join him in his own game and get my husband to pee up the door just to annoy him.  But knowing Kevin he would just beat my husband up, tie him up with Gordon, Rocky and Brutus and take over my house and claim squatters rights.

Either way – the cat is in the Hood, the piss is on the door and this is war.

Samantha Rose (C) Copyright August 2015

What’s around your corner – ‘bubbles, baths and candles’


My Shower – the place to warm my hands up!

A year ago I was living in a tatty little duplex – 3 bedroom house.  An old building in very poor repair and in dire need of decorating, renovating and modernization, however it was our home and we were lucky to have it even if we couldn’t afford to patch it up.

The house had a shower in it which is fine, but I hated that shower with a passion.  As you can see from the photo, it was old, had tiles comparable to that of ones used in the school showers at my old school and it had that horrible frosty shower glass with wire in it and the shower door was broken.

As I have an auto immune disease which affects my joints, I remember placing my hands which would always turn blue with cold; under the shower in a bid to warm them up and I would end up staying there, standing while the boiling water splashed over me until i was bright red and shrivelled.  Anyone with joint issues will vouch I am sure, just how good a soak in a hot bath is and can match a panadol any day of the week for joint and muscle pain.

What was my wish at that time? I shall tell you; the one thing I would have loved to have more than ever was to my very own bath, a bath to soak my aching joints in and warm myself up when cold and what is more; a bath with bubbles and candles to go with it.

It seemed impossible, it would mean selling the house and moving, it was in the ‘too hard basket’ and as my husband wasn’t fussed about a bath, I assumed it simply wouldn’t happen and for five years we remained in that house with that shower that I hated and grew to dread using.

A bath – a pipe dream, it would never happen and I was sure of it.

To cut a long story short, last year we found a house that we liked, we put in an offer which was accepted and our house sold within a week.

You know where I am going with this don’t you?  Yes, the new house had a bath in it and I remember the very first day I used that it, I filled it with boiling water and bubbles and I didn’t forget my candles either.

 I lay in my new bath and kept topping up the water until my skin went pink and shrivelled. Never had I been so happy, never had my joints been so happy either.

Such a little thing made a huge difference to my life and all it took was a change – albeit a large one, but one I could have made years ago had I been open and receptive and certainly not daunted by it.

ImageMy bath – complete with bubbles and candles

Darkest moments and all that….

We all go through dark moments in our lives where we literally cannot see the wood for the trees, where we cannot envisage a light at the end of the tunnel and wonder if we will ever get a lucky break.

I truly believe that at some point in our lives, we will take that journey and whilst we have no control over that, how we view it and deal with it is entirely up to us.  It is our choice because at the end of the day, we do have a choice about how we deal with things.

I was going through a very very dark and traumatic stage in my life, I had a period of not working, going through a legal case and we had to take a mortgage payment  ‘holiday’ which had two weeks left to expire.

I remember walking around the local wetlands where I live, it is a 6km walk and I was marching along with my little dog totally oblivious to my surroundings – I could have been anywhere, you could have walked past me naked and I would not have seen you, I was literally wrapped up in my own sad little world of worry.

Hearing a noise of a parrot, I glanced to my side and saw a pink and grey (Galah – pink cockatoo), actually there were several of them on the ground.  I love parrots and birds and never tire of them and here was this group of cockatoos right in front of me.

Stopping to look at them, I had one of ‘those moments’ where reality hits and does so quite hard – a moment of clarity if you like.  I was so busy worrying about what I didn’t have, what might happen and various events that had not yet happened as in losing my house, that I was totally blind to what was actually going on around me – life.

I stayed where I was for about ten minutes and took in my surroundings, the parrots flew off and I remained exactly where I was taking stock of life, of me and the choices I could make in how I dealt with things.

Grabbing my phone, I decided to take a photograph of that very moment so that I could look on it should I ever need to remember what was important in life and that is living it and not worrying about it.

To this very day, each time I look at this photograph I am taken back to that moment, to the sounds, sights and smells and I remember how far I have come in so many ways.

ImageThe photo I took of Beeliar Wetlands, Western Australia 

Things can change when you least expect it

Two weeks before we were due to contact the bank, I was offered a lifeline in the form of some temp work which gave me some much needed confidence as well as a wage to pay the mortgage.

A couple of temp jobs later, I was offered a permanent role in a job that I love and that isn’t far from where I live, the people I work with are fantastic and I really could not wish for more.

I am one of these irritating people that totally look forward to going in to work and consider myself very lucky to be in this position but a few years ago, I would never have imagined being where I am now.

Are things perfect in my life now?  No, far from it and I won’t elaborate either but one thing I will say to anyone that is going through a dark patch in their lives and that is things can and do change in the blink of an eye.

No matter how convinced you are of your future, it is not certain, it is not guaranteed and simply cannot be predicted.

Just keep an open mind and don’t shut off a path because you are nervous of taking it; because you never know what is around ‘your corner’ and if you’re lucky, it will contain baths, candles and bubbles.


No words needed – South Beach, Fremantle, Western Australia

Samantha Rose (C) Copyright March 2014

The Waiting Room

This article is about my journey when my Mum was diagnosed with cancer and to a certain extent – my Mum’s as well in the best way I can tell it as she can’t herself.

To respect the privacy and emotions of my family, they have had little mention in this because I believe that whilst we all played an essential part in helping and supporting Mum as a family, we all have our own story to tell.

We have all travelled our own path and this one is mine but it is by no means taking away the hard work and dedication that my sisters, nieces, and nephews and friends offered to my Mum – because trust me, that was when I realised the importance of family and just how close we are.  But as I said, this is my story as I saw it.

The Waiting Room

Most people I know would assume a waiting room is something that is found in a hospital, doctors, dentist, physiotherapist and they would be right but this article is not about that kind of waiting room.  It is about a waiting room that not everyone gets to visit and only some get to notice or observe.

When my Mum was diagnosed with terminal lung cancer in November 2005, our (myself and my siblings) world ended as we knew it and little did we know, that we would be entering a dark tunnel of grief and pain.  I distinctly remember ‘bargaining with God’ to make her better, to make it a medical mistake, to make it a nightmare and most of all, to make us all wake up from that nightmare saying ‘Thank god that wasn’t real’.

Except it was real, it was also brutally harsh, cruel, emotional and exceptionally very painful and the emotional roller-coaster that took place after that fateful diagnosis will be one that every member of my family will remember – each for their own reasons.

When a loved one is diagnosed with cancer, the whole family dynamics change; quite simply they have to.  Each person will take on a role – nurse/carer, driver/organizer, worker/provider, support person etc and it normally is the best person takes on each job so to speak.

After the shock of a diagnosis when you realize that all the screaming and shouting and bargaining in the world won’t change the outcome, and that crying until your arms go numb and your eyes swell up from over crying – everything is still the same.  And when the shock of saying the word ‘cancer’ in the same sentence as your loved one has subsided (but not worn off because for some of us it doesn’t), only then do you start to get practical and make plans.

Because to be honest, you may not be able to change the outcome of the ‘hostile lodger’ that is cancer in your family, but you can change how you deal with it and what is said and done along the way.  So much is within your control if you choose it to be.

At the time of Mum’s diagnosis I was at university studying nursing (something that I never completed) and I remember when Mum was diagnosed, it was the loneliest period of my life.  It was like my foundations had been rocked and they had because Mum was the key part of those foundations and the fabric of my life.


Mum and me in hospital

Even when the heater was on, I was cold – the coldest I had ever been, the loneliest, the saddest and the most frightened.  Who wrote the rulebook on cancer because I needed a section on how to cope?  There didn’t seem to be a chapter on that part.

‘Where do you get strength from?’ I asked a friend one day when I told him about my Mum, sobbing down the phone as he listened to me, not knowing what to say – who does in those situations?  Where did I find the strength to cope?   Well I shall tell you, I found it from my friends, I found it from the cancer support team, and I found it from my family knowing that the only people that truly know what you are going through are the ones that are going through or have been through the same thing.  But most of all I discovered a strength within me that I never knew existed, almost as though it lays dormant until required and then like a trooper, steps right up to the table.

The best advice came from a friend who wrote me a message which read simply ‘Spend every second you can with her, say everything you want to, leave nothing unsaid and make the most of each day with her’ (or words to that effect).  And it was that advice that served me well and something I would advise anyone else to do as well.

Due to Mum’s rapid deterioration, I gave up university; after all why should I study about caring for others when my Mum needed me to care for her?  Also the university couldn’t grant me any further compassionate leave but did offer me ‘some time off in the third year’ (I was in the first year) and as Mum was on borrowed time and had a poor prognosis, I bit the bullet and walked out of University that very day that they said that I couldn’t have further time off.

I remember walking through Ealing (London) feeling as though a weight had left my shoulders because now I could commit to what was important – my Mum.

“Mum, I have dropped out of Uni” I told her cheerfully but secretly terrified as I would have to pay back the NHS Bursary payment that I owed them.  How I was going to pay my way was anyone’s guess and I was more than aware of the strain that it would put on my husband who would be the sole earner.  Still, I did not regret that decision and I still don’t to this very day.

“You didn’t do that because of me did you?” Mum asked – sounding weak and tired on the phone.

“No of course not” I replied – which was partly true really as I didn’t want to stay in a place and an industry that claimed to care yet wouldn’t allow me to do the same with my own family.

“Liar” Mum replied – she knew me so well!

God bless the telephone….

I don’t know about you but to those of you that have been in a similar position, I found myself calling my Mum a million times a day, I would start off pretending that I needed to ask her something, then by the end of the day I would be doing it purely to hear her voice so I knew she was safe and ‘still alive’.  I will also admit to still having Mum’s mobile number on my phone because I cannot bring myself to delete it.

“Will you stop calling me, I have spoken to you lots of times already” Mum would tell me off.

“Love you Mum” I would say at the end of each call.

“Love you Smanff” (My childhood nickname) She would reply, I would tell her that I would speak to her tomorrow, she would agree but we both knew that I would call before bed.  Suddenly all the ‘I love you’s’ in the world were not enough and I had realized that up until now, I hadn’t appreciated her like I should have done.  I had always assumed that when I went back home, she would be there in her reclining chair with her handbag by the side of her, her glasses case on the arm and her coffee cup by the table.

I had assumed that she would be in her chair, grinning like a Cheshire cat when I walked in the door, as she would say “Hi Smanff”.

I had also assumed that I would always be able to call her and say “It’s me” and Mum would reply “Hello me” as she always did.  But we all know the old saying about assumption – just never do it because it will come back to bite you.

When Mum came out of hospital after the initial diagnosis, the family met up at Mum’s and we had a traditional Sunday roast and Mum sat at the end of the table like the Queen she was and also the most significant person at the table.  I had brought my video camera but sadly Mum was so tired she would fall in and out of sleep and the only footage I got of her that day was when she was asleep – why didn’t I video her before this diagnosis so that I would have had better and more memorable footage – now there’s a question I ask myself every day.

I recall looking at her, when did my larger than life character of a Mum get so tiny and frail – how on earth did that little body manage to hold such a big personality?  I wanted to stare at her face forever and take in every aspect so that I would remember everything; I stared at her until my eyes burned.  I stared at her chest to make sure she was breathing and I stared with all my heart and soul because I knew, well we all knew, that she was going to a place that we were not allowed to go to.

“I will fight it” Mum would say firmly looking more determined than I had ever seen her, but shortly afterwards she would be fast asleep in her chair looking as pale as pale can be.


Mum – the ‘fighter’

She had been prescribed morphine quite early on but she hated it, she said it sent her ‘mad’ and much to the disapproval of the cancer nurse specialist, Mum stopped the morphine to regain her mental clarity on thoughts and judgment and you know something – that was her right to do so.

Mum seemed ‘normal’ for a while, well I say a while it might have been a few days, it might have been longer.  She was tired and she was uncomfortable but she was ‘with it’ as to quote her.

But very slowly, so slowly that you could barely notice it, she became quite distant, as though her mind had the ability to leave her body (and us) for a bit and go off somewhere else.

“What are you thinking Mum?” I would ask her at various times her when it appeared her mind had wondered.

“Nothing” Mum would reply.

This would be a daily question with the same response but one day when I saw her ‘escaping’ from her own thoughts, I asked her the question again.

“What are you thinking about Mum?” I said – expecting the same response.

Mum ‘came back’ from her ‘mind escape’ and stared at me hard.  Her piercing blue eyes bore into mine; she paused momentarily as if choosing her words carefully and replied firmly “I am thinking about how you kids will cope when I am gone”

That was when it dawned on me that how we (me and my family) coped with this, would determine how Mum would cope with her cancer and her own journey.

It took a huge amount of courage to say “We are going to be just fine” – Mum looked at me and held my hand.  She had ‘Mum hands’ – you know what ‘Mum hands’ are, they are special hands that kind Mums have, usually with too tight rings on them giving the impression of chubby fingers.  ‘Mum hands’ are used to cover your forehead to see if you have a temperature and are far more reliable than any thermometer.

These very special hands are used to comfort you, hold your hand and generally make you feel that nothing else could match nor compensate for the ‘Mum hands’ of your Mum – except for when she is giving you a clip round the ear for being naughty and then those hands are the biggest in the world and a force to be reckoned with.

Mum stared at me for what seemed ages, as if assessing my ability to cope without her.  Could she tell I was crying inside and begging her not to leave me, could she feel the raw pain I was feeling and the emotional and devastating need to go where she is going and hang on to her hands and follow her?

Mum then sighed and nodded, as though she had got all the answers that she needed, whatever she had tested me with, I had passed the initial stage and she could go on to the next stage in her life and that is what I have called ‘The Waiting Room’.

The Waiting Room – (my definition) ‘a place where your loved one starts to go when they want to prepare you for your life without them in it’ 

Obviously your experience may be different and you might have your own version of how things are when you are faced with losing a terminally ill relative but this is mine.

Mum’s mental escapes would become more and more frequent.  She would be sitting in her chair with her eyes open but she ‘wasn’t there’, she would go off into her own world and I couldn’t go with her.

“Where do you go Mum, can I come with you?” I wanted to ask but couldn’t.

One day I had to go to the shop to get her some milk for her coffee, when I got back, Mum was sat in her chair with a broken glass on the floor around her feet – I felt sick with horror of the what might have happened, she could have hurt herself badly and I hadn’t been there to protect her.

“Sorry, I broke a glass” Mum told me in a weak yet matter-of-fact voice and then off she went escaping from her own mind into ‘The Waiting Room’.

I cleaned up the glass and made her a mug of coffee and sat down next to her and decided that if I couldn’t join her in ‘The Waiting Room’ then I would try and watch her go there.

I made small talk with Mum and watched her nod and smile at suitably appropriate moments and then quite suddenly, Mum drifted off, her eyes took on a blank stare, she would stop communicating and off she would go into her new world ‘The Waiting Room’.

I stared at her and tried to imagine what it was like there and I came up with this explanation. 

They start off by distancing themselves from you at a tiny bit at a time, but prior to this, they need to know that you are ready for them to take this step.  It is an invisible room with an invisible wall that is so strong; it cannot be cracked nor broken in to.  They can see you but you cannot see them and they will keep dipping in and out of this room to check on you that you are OK and more to the point, that you are going to be OK and only when they are satisfied that you are strong enough, will they decide the time to make their last trip to The Waiting Room before they pass on to their ‘final resting place’ – wherever that may be depending on your beliefs (or not).

I sat for what seemed ages staring at Mum, with her ‘Mum hands’ all clenched up holding her own fingers, her eyes open, a wistful look on her face – wherever she was, I wanted to be there with her, why couldn’t I go with her, it just wasn’t fair?  But I guess there isn’t space for me there, I don’t know but I do know that I saw her go there, I saw it with my own eyes and heart and what is more; I felt it too.

Many a time I watched Mum go through to ‘The Waiting Room’, each time for a little longer and then quite suddenly she would answer a question as sharp as you like as though someone had whispered in her ear it was time to come back to me.

The times Mum was in ‘The Waiting Room’ were lonely times and although she was sat next to me, I was the loneliest and the coldest I had ever been in my life and no heater in the world could have warmed me up.

Mum hadn’t been out of hospital following her diagnosis for very long when she collapsed and was taken by ambulance to hospital.  I was back in London at the time with my husband after travelling between St Albans and Northolt, when I received the message and made my way to the hospital.

Hemel Hempstead Hospital

Mum was in hospital for about 10 days before a hospice bed was found for her, I refused to leave the hospital and was allowed to sleep on the floor in the dayroom and my goodness did we have some fun in there!

The following memories are to name but a few that happened in hospital and during that time we were there, we forged friendships with nurses, doctors, patients and relatives and the kindness of complete strangers totally restored my faith in humanity at that time.

Each evening I would help Mum settle and do little bits and pieces for her, then I would change into my pyjamas and shuffle off to the dayroom armed with my blanket and pillow and watch TV with the other patients.

One night I had cleaned Mum’s false teeth and I was standing over the sink with a pot of Steredent false teeth cleaner (the smell reminds me of Mum) and I said in a too loud voice “Mum, I have cleaned your false teeth for you and rinsed them for the morning”

Mum pursed her lips in a disapproving ‘Mum look’ and replied rather curtly “Thank you Samantha, now the whole ward knows I have false teeth!”

Aside from the fact that my darling Mum was sitting up in bed in a blue nightdress looking like a gummy bear with no teeth in her mouth, the whole ward could see that she had no teeth of her own!  Still I got told off for making it obvious – something that still makes me smile to this day.

Another time there was a male prisoner on the ward and he was handcuffed to two prison warders.  I made friends with him and would often go to Budgens to buy delicious food and share it with him and his wardens and another night the prison wardens treated him and me to pizza and we shared it – it was the best pizza that I had ever eaten and I will always remember that night we all fell asleep in the dayroom, me huddled up with a blanket and the prison wardens chained to the prisoner, occasionally jangling their chains each time they moved to change sleep positions.  I don’t know if I felt safe because they were there or unsafe because they had a prisoner.  But they were great company and so was the prisoner and I often think about what he is up to and if he or the prison wardens remember the tatty looking blonde woman curled up with a blanket late at night in the dayroom, or the night I treated them to smoked salmon from Budgens.

I told Mum about the prisoner and Mum said in a worried voice “I don’t know that I am happy about you hanging out with criminals”.  But she needn’t have worried, the guy was chained to two officers at all times and those poor bastards had to accompany the prisoner even to the toilet!

It was ever so funny one night; we were all in the dayroom having had our food and sharing sweets and stuff when the nurse came in to check on me.  Apparently Mum had said to the nurse “My Samantha is hanging out with a criminal, can you check she is OK?” (Imagine that in a Yorkshire accent!)

So myself, the prisoner, the two guards and the prisoners girlfriend (who was visiting at the time), all went down to Mum’s bed to show her that I was OK and the prisoner waved to Mum with his chains rattling and the prison wardens all waved as well and so did his girlfriend – it was like being a member of the Chain Gang!  Mum nervously waved back and raised her eyebrows!  We laughed about it the next day and Mum said I had surpassed myself ‘hobnobbing with the Underworld’!

Mum rarely went into ‘The Waiting Room’ when she was first in hospital, in fact she seemed to communicate more there than she ever did at home which told me that her need to have myself and my sisters and brother cope after she had gone, was really important to her and when she was in hospital, she didn’t have to pretend to be brave, she didn’t need to be scared of upsetting or scaring people because at the end of the day death and the grieving process is not only scary, but terrifying for all involved and after all, it’s something that ordinarily our parents want to protect us from.

One night I was sleeping beside her bed, curled up in a chair with a blanket and a pillow.  I had just fallen asleep and could feel someone poking me, I rubbed my eyes and looked up and it was Mum leaning out of her bed poking me to wake me up.

“Are you OK Mum?” I asked her.

“Just checking that you are still here” Mum replied and then patted me on the shoulder.  I curled back up again but stayed awake in case she needed me.

“Mum?” I asked her.

“Yes love?” Mum replied, I could see her beady little eyes glistening in the dim light of the hospital bed lamp.

“I love you” I replied.  I would have said it ten times as well, in fact I did under my breath when she was asleep.

“I love you too” Mum said and patted me again.

“Just so you know” I told her and I could feel her frail hand fumbling from the cot sides of the bed – I took it and held it, feeling her gnarled arthritic fingers grip mine – it was precisely 11.20pm, I remember the time well as I had my phone next to me.  That was how we would always fall asleep, holding each others hand and I wondered just how and when something so simple as holding hands could suddenly become so important and I held her hand as though my life and hers depended on it.

That became our bedtime mantra you know, “Mum I love you, just so you know” – I said that every single night up until the very morning that she died.

Mum had eventually started to go back to ‘The Waiting Room’ while she was in hospital.  One night we were watching ‘A Night at the Proms’ on TV and Mum was in her own world, probably assisted by the morphine and nothing would rouse her.

I was organizing her bed as I still liked to plump her pillows though and tidy her hair and just feel like I was doing something, in fact I ended up plumping a few pillows there of the elderly patients, to this day I don’t know if their pillows needed plumping or they allowed me to purely to humour me.  I assisted with the teas and coffees as well and we would all gather round someone’s bed at night and watch TV over a cuppa.

When a ‘Night out at the Proms’ were on TV, the all male opera group were on ‘IL Divo’ and they were Mum’s favourite, she loved them.  I recall Mum opening her eyes and giving a big grin before she went back to sleep, I guess those boys have the power to ‘get anyone out of the Waiting Room’!

The Hospice

Mum was transferred for what was to be her final journey to the hospice; I was in the ambulance with her.  We had all gained a level of acceptance, although it was still so painful, we knew what was going to happen and it was almost like an organized and controlled journey and it was out of our hands.

Many people in life are denied the chance to say goodbye to their loved ones, car crashes/plane crashes/murder/heart attack – all kinds of things can snatch a life so proper goodbyes are denied to those left behind.

With cancer and good medical care, you are often given the chance to say goodbye, either at the time or you can say your goodbyes beforehand – it doesn’t really matter, but basically you get the chance to say what needs to be said, you get the chance to say ‘I love you’ or ‘I am sorry’, or to make peace and get the chance to hold the hand of the one you love.  I consider myself blessed and incredibly lucky to have had that time with my Mum because not everyone is so lucky.

The Wedding Planner!

When my husband and I got married, we didn’t tell anyone – not our parents, or anyone and yes we hurt them, which is something, I regret doing to this day.  A week before Mum died, I had organized with the vicar in the hospice if we could renew our wedding vows and I would surprise Mum on Christmas Day – except that the best laid plans tend to screw up.

Mum had started to become confused and in the end I had to tell her about ‘the wedding’ to keep her focused.

“Mum, what is happening on Christmas Day?” I would ask her.

Mum who had been back in her ‘Waiting Room’ would very quickly come back to me and say “A Wedding” and then she would smile and be off again.  Mum was fading fast and I had 4 days to keep her, 4 days to make amends for marrying without her being there – 4 days, would she make it?

A (difficult) Decision

It was a couple of days before we renewed our wedding vows and I was assisting Mum with her tablets.

‘Here you go Mum’ I said and popped her medication in her hands and helped her put it in her mouth.

Her eyes fixed on me, she was out of ‘The Waiting Room’, and she moved her tongue from side to side in her mouth and then removed every single tablet and handed them back to me.  It didn’t register what she wanted so I made attempts to give them back to her.

“Come on Mum, you have to take your meds” I smiled at her.

“I said NO” Mum said firmly, her blue eyes burning holes into mine.  She was making a stand, making a choice and asking me to respect it.

“That’s OK Mum, you don’t have to do this anymore, I shall let the doctor know” I said softly, trying to hard not to cry that my eyes were burning.

Mum suddenly became more lucid and came out of ‘The Waiting Room’ and held my hand, she was trying not to cry. “But what about you kids, will you be alright?”

I will always remember what I said to her because it took every bit of strength to give her my next response.

“Don’t you worry about us, you have taught us well and I promise you that we are all going to be just fine” I replied.

Mum stared at me, nodded, held my hand and went straight back into ‘The Waiting Room’ quicker than I have ever seen her do, in fact I could have sworn that she skipped in there with a spring in her step – she was ready for the next stage in her life.  I held her hand and she maintained a weak grip on mine and that was how we remained until my sister arrived.

December 25th 2005

“Can’t stop, I have a wedding to go to!” The vicar said cheerfully after we had done the Christmas morning carol service where my niece had stood up and sang a song for Mum.

I remember wearing this horrible nasty grey jumper and some jeans, I looked awful but I still reserve the right to have the title of ‘blushing bride’ even if it was a while since I had blushed let alone initially made my wedding vows.

My family gathered round the bed and my husband and myself stood near the vicar and we had to read our vows from the bible.

There was one moment that Mum would have loved and that was when the vicars robes knocked over a jug of water and it went everywhere, I wanted to giggle but felt that God would have kicked my arse and told me off but I know my Mum would have laughed – perhaps she did and I never saw it.

Mum was barely awake, sedated from morphine and she could not be roused really.

Let me tell you that it took all my strength not to cry reading those vows and I suspect it would be the same for my family as well.  We all held on and remained composed as the vicar read out the vows and we repeated them.


Our ‘wedding day’ by Mum’s bed

At the end of the ceremony, my nephew said, “Aunty Samantha, look! Quick, look at Nana!”

I looked at Mum’s face, she was lying on her back, her eyes open and tears pouring down her cheeks – she had heard it, she had heard everything I was sure of it!

“Mum, squeeze my hand if you heard the wedding” I said to her as I held her hand, which was cold and floppy.  To my immense surprise, Mum squeezed my hand as hard as she could.

“Mum, squeeze my hand if I have made it all OK” I whispered to her, wanting to try yet wanting to stay composed – tears would upset Mum, I was sure of that.

Mum squeezed my hand so hard that I wondered where her strength came from.  “Mum, I love you” I whispered close to her ears.

“I love you too,” Mum whispered in a husky barely audible voice.

26th December 2005

Mum died peacefully at 2.40pm on 26th December 2005.  It was like she had left ‘The Waiting Room’ and had gone to her final journey, she had fought to stay with us for as long as she could now she knew we would all be OK, she felt comfortable enough to leave us.

Where did you go Mum?

The question I ask myself all the time since Mum died is ‘Where did you go?’.  I want to know where she has gone, I want to know where she is and whilst it is nice when people tell me “She can see you, she knows you miss her”; I am rather selfish as I want proof of all this.

I saw what I perceived and interpreted as ‘The Waiting Room’, is it so selfish of me to want a glimpse of what is beyond that?


Me doing Race for Life in Mum’s name


Abdel, Mum and me – healthier days and Mum always smiling!

Dedicated to my Mum whose strength in her journey taught me how to be strong myself and how not to be afraid of what life may throw at me.


Cancer is not only a disease, it is a lonely and traumatic journey that can turn your life on its head – but there is help out there and please do not be ashamed to admit that you need a helping hand to cope – either for yourself or your family.

The biggest step is deciding that you need to talk to someone and by talking to someone, you take the first step of managing the grieving process, because at the end of the day it is that – a grieving process that has to be dealt with by yourself.

Please be kind to yourself and remember that there is help out there, reach out for it and don’t be scared to ask for it.  Something I found helpful was before I went to bed each night, was to write down in a notebook exactly how I was feeling, it was random, it made no sense, it was barely readable but as my psychotherapist told me ‘If it’s on paper then it’s out of your head’ and he was right.  Then I would rip it up and throw it away and even I  was surprised at how much lighter I felt after doing it.

Here are some links that you may find useful – although some of these are UK links, you may find the equivalent in your own country.

Samantha Rose (C) Copyright 2013

A Cup of Tea Love?

My favourite tea mug 
There is something quite remarkable about a nice hot cup of tea served in the ‘right’ mug. Perhaps you don’t understand it yourself – you may not even drink it, prefer coffee or perhaps it is just an English thing but I reckon a cup of tea solves everything – at least it does on Coronation Street and Eastenders.
World War 3 – not a problem, let’s get the kettle on.Someone dies? – that’s OK too, at funerals, there is always someone that can be relied upon to get out their finest bone China cups and make a cuppa, it will probably be posh and brewed in a tea pot with tea leaves and served with a lump of sugar or two – but that’s OK, tea is tea and does taste rather exquisite when sipped from a bone china mug.

Builders and tradesmen enjoy their ‘brew’ at tea break, their cups might not be the cleanest but I will have you know that a mug of hot tea washes down a good cooked breakfast rather well.There are occasions however, that a mug of tea does not suffice and that is on girly nights in when you are in for a feast of girlie chat, or boyfriend split ups and then it’s time to hit the bottle and mix it with chocolate.

Have you noticed that we all have our favourite mug – mine is the one that my friend Mel bought me for my birthday a few years back, The Bold and the Beautiful mug and it has a chip on the side but my tea tastes best in that mug.

So what is your favourite tea mug – is it a posh one or a chipped one, do you let it go all brown and skanky or do you clean your cup religiously?

And always remember how a cup of tea is offered is also important.  Nobody says ‘Want a cup of tea love?’ quite like a Northerner, that’s when it sounds best. Just listen to Rita or Mavis on Corrie and you will know what I mean – or even Our Maria from Whitwell, that is just a Northern thing and cannot be replicated but on the whole, a cup of tea equates to comfort, warmth, reassurance and often a good gossip with friends.

I would like to declare today National Cup of Tea Appreciation Day, so with that in mind, go and put the kettle on and make yourself a cuppa and appreciate it’s ability to solve problems, issues and wars.

God bless tea and all who drink it.

Samantha Rose (C) Copyright 2013

Fight the fight and keep on running!

A while ago I posted a blog about cancer research charities and where does your money go.  I also mentioned about how my attitude to cancer was before my family became a victim to it and how quickly and drastically ones attitude can change once you lose a family member to this disease and for me/us, it was our Mum.  Firstly before I go any further on this, if you would like to see the link to that blog here it is in case you would like to read it:

So cancer had hit my family and devastated us, turned our lives upside down, hurt us, made us angry, we asked questions, we still have no answers and the question that remains in our minds is ‘Why?’ – why our Mum? why our family? why anyone? and why have they not found a cure yet?

But we all got on with our lives, we had to manage the best way we knew how and that was to just carry on.


My Lovely Mum

We came through it as a family, we emerged at the end of a dark and depressing tunnel, we ‘did the deal’ with God and hedged our bets by doing the Cancer Research UK charity fundraiser ‘Race for Life’ where events are set up around the United Kingdom and women all group together to run (or walk) 5km to raise money for the cause because we did not want anyone to go through the pain of a diagnosis of that kind as it is not something you would wish on your worst enemy.

Besides we had suffered cancer once in our family, life would have to be a bitch to strike again – wouldn’t it?  Well I would have (naively) thought so, but I was wrong – we were all wrong.

The following is dedicated to my brave sister Julie

ImageMe (left) and my sister Julie (right)

Julie like many of us at some point in her life, had exhibited some bowel/intestinal symptoms, nothing major and like many of us tend to do with health issues; ignored it until those symptoms became too much to manage until she eventually went to the doctor who referred her to a specialist.

A biopsy was taken and while various tests and scans had been ordered, Julie carried on with everyday life as best she could except now the biopsy had been taken, it had left her in excruciating pain.

I live in Australia but each day I would ask my Dad ‘Has Julie got her results back yet?’

I had briefly toyed with a diagnosis of cancer but only briefly, after all it was too painful to contemplate and if I am honest, I was in that famous Egyptian river of ‘Denial’ because I did not want to believe cancer could even be a possibility.

A day to remember

I remember the day that Julie got her results back as clear as though it were yesterday.  I was doing a video call with my Dad (Face Time) and Julie had called my Dad on his mobile with the news.

She was at the hospital and had been called in to get her results to be told that she had rectal cancer, Julie was on her own that day and you can imagine how devastating it must have been to be told that when you have nobody with you?

Julie broke the news to Dad over the phone while at the same time I sat at my computer and watched Dad’s face on the video call.  As she told him the news I saw Dad’s face fall as he said ‘Cancer, Oh no’.  I also remember feeling sick, dizzy and wanting to scream ‘No, not my sister, not my family, not again!’

That very afternoon Julie was to see the Macmillan Cancer Nurse specialist. And in the space of a few hours – Julie’s life had changed and yet again that bastard called ‘Cancer’ had invaded our family.

Why had this happened? Why our family again and why Julie? We had all done Race for Life and we had all donated to cancer charities, where was this cure that the experts kept saying was so close?

After diagnosis – plan for treatment

To our relief the scans had shown that the cancer had not spread. Never have I been so happy to see Julie’s face on video chat to tell me that news and apparently the success rate with treatment was high which trust me, is something to hang on to and be happy about.  When it comes to cancer; you learn very quickly to take each day at a time and be thankful for small blessings.

Julie was to have a couple of weeks (spaced apart) of intensive back to back high dose chemotherapy and spend 5 days in hospital and also an intensive cycle of high dose radiotherapy aimed directly at the area.

The chemotherapy made her sick, like really sick – imagine nausea in its worst form and then double it.  Imagine not being able to eat normal foods and what you can eat is so limited and Julie could only tolerate baked potatoes and even then, that was a struggle.  Strong cooking smells made her sick (and still do) and to add to that little bundle of side effects, Julie also gets mouth ulcers so even the limited food she can tolerate hurts her mouth terribly.

Being in hospital was exceptionally hard for Julie, you forge friendships with people whose treatment may not be as successful as yours and the outcome often devastating, these people become your friends in a way that no-one else can understand and if anything should happen to them, it is taken personally and hits hard.

Julie tells me that she is a member of a little club called ‘The Radiotherapy Club’ where she and other patients have become friends, forged bonds and have plans to all meet up and go out for a meal once they are well enough.  It is an exclusive club that only they will understand and anyone that has not been through what they have, would not belong.

Work was and still is out of the question for the time being, although Julie has finished her cycle of chemo/radiotherapy for the time being, she is still too unwell to work.  The UK benefits system is as such that whatever Julie is entitled to, will not cover her living expenses so that is another worry added to her pile – finances.

Pain – anyone that has had radiotherapy will tell you how much it hurts/burns and Julie has  severe ulcerated burns to the radiotherapy target point on her body – pelvis/groin area, and a couple of weeks ago these became infected and she had the beginnings of septicemia and was treated with high dose antibiotics.  In fact, Julie informs me that her fridge is full of medicine instead of food and that painkillers are now her best friend.

Well meaning ‘advice’

People are generally well meaning but Julie also had to contend with other people telling her what she should and shouldn’t be doing and how ‘herbs can cure cancer’ and you have no idea of how offensive that can be to have someone say that to you.

Julie has quite rightly decided to have faith in her doctors and specialists and put her trust in them to fight her disease and whilst she is touched that other people are thinking of her, conventional medicine is the path she has chosen.

Because at the end of the day the only person that can truly understand what chemo and radiotherapy is really like, is someone that has gone through it themselves the rest of us can only guess.

Where is Julie at now?

Julie is waiting for her next scan which will tell her if the treatment has worked or if she will need further chemo/radiotherapy and/or surgery and is simply taking one day at a time.

So much has happened in a relatively short space of time but she has done it, she has gone through treatment that has made her sick, shut down her immune system and caused intense pain and infection.

Julie has made friends of equal bravery and strength and has been on the biggest learning curve and journey of her life.  A journey that she has had to go on and no matter how hard it becomes; when it comes to pain, fear, and difficult treatment choices, she travels it alone when it comes to the overwhelming fear and thoughts that march through her head at night.


Once again my family are asking ‘Why?’ Why has it affected our family again? Why have they not found a cure for this disease, we have hedged our bets and done our bit for cancer charities, we always drop money into the tin, I have done Race for Life a couple of times or more so why?

Well whilst I don’t know the answer as to why cancer has turned up uninvited into my family yet again, I do know that in order to find a cure for it; the research has to continue and running in ‘Race for Life’ a couple of times is not enough.

Because when it comes to cancer and a cure – it is one race that you have to keep on running in – for as long as it takes, you run it for yourself, you run it for your loved ones and while you are running that race; you pray that along the way the money that you raise will find that elusive cure.

Colo-rectal Cancer – don’t die of embarrassment

As quoted from the cancer research UK website, the earlier this cancer is detected, the easier it is to treat and the better the success rate.

If you notice any change in your bowel habits – the slightest of things that are not normal for you, then swallow your pride and embarrassment and go to your GP.

If you have a family history of this type of cancer then ask your GP if you can be screened because early screening detects the potential for cancer before it develops.

I myself, have just had my colonoscopy to screen for this type of cancer and I am ashamed to admit that I have had symptoms for about 10 years – bleeding when I go to the toilet, constipation  etc.  As I have an auto immune disease, these symptoms often go hand in hand with that; and that is what I put it down to.

Not wanting to go through that embarrassing examination, I just lived with the symptoms.  Then when Julie was diagnosed my embarrassment seemed well, now embarrassing if you like and I swallowed my pride and saw my GP who organized a semi urgent referral to our local hospital.

About a month later I was called in to have a colonoscopy which in the end, the most unpleasant part of it was the fasting and having to drink some vile lemon tasting stuff that cleaned out your bowels!

The best part of that colonoscopy was the doctor telling me that everything was normal but as I was a high risk (family history), I was to have them done every five years and to me, that is a small price to pay for early detection.

So please listen to your body because if your bowel habits have changed, if things don’t feel quite right – then get it get checked out because chances are that it may be nothing but until you get it checked, you will never know and you might just find that the embarrassment that stopped you going to your doctors in the first place, will be the very thing that could turn your life upside down if you are diagnosed with a cancer that could have been treated or prevented.

If you would like more information on bowel cancer – here is a link to the Cancer Research UK site.

 A message to Julie

Julie, I don’t know how or where you have found the courage to deal with what you are going through and I am in awe of your bravery.

Having such aggressive treatment that makes you feel so sick and causes you so much pain is hard enough but having it on such an intensive basis with each dose making you more sick than the last is even harder, yet you don’t complain and you get on with it and handle it with dignity and strength.

You are unable to work due the effects of the drugs, and because of the area that the radiotherapy is aimed at, even basic things that we take for granted such as walking and ordinary movement must be so excruciatingly painful for you.  Yet you still force yourself to get out and about to keep yourself moving.

As you know, Race for Life became significant when we lost Mum – we did our bit, not expecting cancer to hit our family twice.  But it has and once again, we realize that life goes on and as long as we are alive we have a life worth fighting for.

Which is why I am so damned proud of you for entering Race for Life this year when I know how crap you are feeling and how hard it will be for you, both physically and mentally.

So no matter what this disease chucks at us, we are and always will be ‘Team Stocken’ and we will fight it, and whilst I can’t be with you all to do the run, you can bet your life on the fact I will be thinking of you every step of the way.

208300_6465598316_3624_n‘Team Stocken’ – a force to be reckoned with

Good luck for the race Julie, I am so proud of you and I love you so much so don’t ever forget that.

Cancer Research UK – ‘Race for Life’

This particular race has never been more significant than it has for Julie and this time she is not just doing it for our Mum, she is doing it for herself and ultimately to raise money to fund treatment and a cure.

This time she will not be competing as a healthy woman, she will be competing with  cancer but don’t be fooled, she is far from a victim.  Julie will still be fighting the highly toxic effects of chemo/radiotherapy and she will do this with one aim and one aim only and that is to raise as much money as possible.

Every single donation is significant and will inspire Julie and every km walked will pose a painful challenge for her but I have every faith that she will do it.

Cancer does not discriminate and it is a chameleon in the sense that it takes the face of each and everyone that it affects and knows no boundaries.  It turns up in your family uninvited and no matter how many times it does, we have to keep fighting it to find a cure and we cannot give up on the belief that one will be found.

Don’t wait until you become a victim of cancer before you start supporting cancer research, so please – ‘keep on running’.

Here is the link to Julie’s page if you would like to donate.

Samantha Rose (C) Copyright May 2013