TRAIL OF THOUGHTS

It's late and I should sleep, but there is so much to think about. Some is important, some not so. My mind darts from one thought to another. Even I'm confused.

I feel pain from the drain bottle I'm still attached to and irritation where blisters are forming next to the sticky plasters I can't tolerate. It seems major. It's not. I think about two men awaiting a cruel fate in Bali. How must they be feeling? What must they be thinking? That's major. My worry is not.

Then I think about some old friends who are experiencing a hard time but only "shared" today, days later. They didn't want to add to my load as I was having an operation. I'm upset. I love my friends and don't want to be " that" friend that no one can talk to because my situation will always be worse.

And I think about what I just wrote. It will always be worse. Yes it probably will and now there's double dose in this family. And there are conversations that start and end with " it's not fair". No, it's not fair but we work with what we've been given.  And we soldier on.

And just as quickly the next thought is for young Meghan, an 11 year old girl with CS. Ashton wrote a news piece for a journalism class on this child and her mother, who are exemplary in blazing a trail in how to manage our condition. Then I think of the photo of her hugging the boxing kangaroo I sent her last week. Apparently it's going to hospital with her next week. It's not fair. She's only 11...but she's tough

My children are equally tough. Today I took them to lunch - just me and my girls. It seems lately that we can't be in the same place at the same time long enough, so lunch was a treat for me, even when they started arguing. I miss this noise. Even with a noisy husband my home lacks heart. It lacks their noise, their smell, their chaos. I ache to turn the clock back but know it will never happen.

And just like that the tears start to flow. It happens occasionally. I have coped with lots in my life but living a long distance from both my children cuts me in half.

Today Ashton did her final interview. We've now had enough of the topic but marvel at how stupid the media is. Despite all that has happened in the last week, only one media outlet asks for proof of Ashton's medical condition. We give it willingly. We have nothing to hide. But we're smug because once again they've made the same mistake without checking.

It's late and cold. I worry about Ciara working at the cafe till all hours. It's messing with her body clock and she doesn't need this in a week of assessments. I loved listening to her warm up today. That voice!

I haven't seen my husband in almost a week. I can't go home because of this stupid drain and because in between assessments for both girls, we need to pack. Yes...we're moving...cos this is a great week...not.

Ashton chose the place. I haven't seen it except in photos. It's a big girl decision. If she can shake up the Australian media, do radio interviews and vote, then she can choose a new place to live.

I say a quick prayer. I beg God for a miracle and to spare the guys in Bali.

I pray that God blesses my family and that my mother stops asking me where my sister is taking her for Mother's Day. Honest to goodness! Patience is a virtue woman.

I pray for drains to be out, tumours to be benign, appointments to be made easily and maybe some good fortune to come my family's way. It's about bloody time don't you think?

Till next time...xxx

DRAINED

So let me tell you about yesterday. Firstly however...

If you haven't read the last CHRONICLES OF A LUMPY PERSON post written by my daughter, then you are not up there with the cool people. If you wish to be one of the cool people, stop now, grab a coffee, sit back and read it ( link below) because the rest of what I'm going to write will be meaningless without the background.

http://lumpyone.blogspot.com.au/2015/04/not-belle-at-all.html

So, Ashton wrote that article Wednesday night. She was all worked up about THAT woman and wanted to get it out of her system. She sent it to me and I got the shivers. The hairs stood up on my arms and my kids know what that means - you're either going to win X factor or what you've written is bloody good. She needed a platform to post from. I willingly lent her my blog post and warned her this would go viral. " Don't be silly Mum".

The emails, tweets and phone calls started at 5am the following morning. Apparently either nobody on the east coast of Australia knows about the time difference between East and West Australia or we had failed to mention we were in Perth, Western Australia and still asleep.

Now on any other day I would have managed the communications and the requests like a pro. But yesterday when I woke up, I was fasting for surgery and my caffeine- less mood amplified my confusion. As I was showering and getting ready for hospital I was fielding calls from channel 10, the Daily Mail, the Herald Sun. It was only when the tweet came from Mamamia did Ashton lose the plot! She loves Mamamia. She was over the moon but not for long because she still had to deal with channel 9, channel 7, WHO magazine and the Geraldton Guardian.

http://www.mamamia.com.au/wellbeing/belle-gibson/

I walked into the hospital speaking to the commissioning editor of news.com.au and tweeting Ben Fordham ( Ashton's journalist buddy/ how did that happen?) at the same time. The receptionist told me to keep talking. She knew me by sight, how unusual! I really should get frequent flier points for hospital visits.

Anyway, madam receptionist was obviously ready because despite telling me to complete my calls and urgent emailing of photos to media outlets around Australia, she started asking me questions:

HER: Are you on citalopram for depression?
ME: ( checks room ) - yes ( meek voice)
HER: and the thyroxine what dose is that?
ME: chucks phone in bag and approaches desk with frown. Is nothing sacred at 8am in a caffeine- less state.

A voice behind me called my name, grabbed my bag and cardigan and ordered me to follow her. Again, stunned and still tweeting photos cos Mamamia didn't understand " I'm having surgery and can it wait?" , I obeyed. She introduced herself, told me it was her birthday and that she'd like my bag please. Err no!

Anyway, phone put away and trivialities begin. At this stage my brain started working and I wondered why the receptionist had been asking me questions about my drug regime? Then came the weigh in. I told her I knew my weight. She told me she needed to see it. I almost punched her till I remembered it was her birthday. As usual, any hospital or doctors scales add two kilograms which do nothing for my self esteem.

I was then returned to the waiting room which was great timing because the Daily Mirror needed more photos. This was done just in time because nursey returned once more and told me to come
meet my anaesthetist. She even grabbed my bag again, at which stage I started to wonder if she may
be indeed a closet kleptomaniac.

Enter male anaesthetist and all I could think of was that he looked like a male Sia. If you don't know
who Sia is you are seriously not cool and you need to read more than the above article. There sat an older male with a polished English accent and in serious need of a good haircut. Well he talked and

talked and talked and I switched off, I tried to figure out where his eyes where. It was a hard job I tell you. Finally he shut up and asked me if I needed a pre-med. I said no. He looked surprised and asked me if I was nervous. He had the good grace to laugh when I told him I was a professional patient. I then said I'd have a premed if that meant I got a bed. He seemed relieved probably cos he could bill me for something else.

I finally got rid of him and Nurse " I want your bag" re - entered. I asked her if he always dribbled so much shite and she laughed and said yes. Oh joy!

Anyway I was marshalled into a share room and greeted by the sounds of my room mate coughing her lungs up. Joy to the world. I changed into my hospital couture, swallowed my drugs, checked my phone one last time and asked to see my doctor, whose raucous laughter I could hear in an adjacent
room.

New nurse walks in and starts asking me same old, same old questions. " I like your bag" she says. Now, I'm worried but I drift off to sleep.

" Sit up. I need to mark your back" says my surgeon who never bothers with basic niceties like hello and how are you? I thought I was dreaming but realised at least he wasn't going to pinch my bag. He laughed when he realised how dopey I was. He used to be my favourite doctor till that moment.

Anyway, surgery soon after with Sia and my ex favourite doctor. He was playing Spanish music and I
told him his taste in music was awful. Sia said " oh you're firing on all cylinders". I said " you ain't
seen nothing". And he knocked me out.

A big accumulation of fluid has been annoying me on my back for a while plus a hardened scar and a haemangioma. A drain was inserted to remove the fluid. The scar was removed and the haemangioma removed too. The drain will remain in for five days. My record is two consecutive loads of five weeks. I hate drains with a passion but this one seems bearable...so far.

I woke up well. My Dad picked me up and we went home. I then slept for the rest of the day before waking to watch my daughter on two TV channels and waking to read all the media repostings of her article. I am so proud of her ability to speak out in defence of herself and others.

How was your day? I'm drained.

Till next time...xxx

NOT "BELLE" AT ALL

Posting on behalf of my daughter. Please read xxx ST

Dear Belle Gibson,

I want you to know that I am angry with you. I’m not actually angry. I’m infuriated beyond belief.

You have just come out telling The Australian Women’s Weekly that you lied about having terminal brain cancer. As a patient who has gone through 15 brain surgeries, numerous angiograms, hundreds of blood tests and many MRI scans, how dare you make money by lying about a hardship that many Australians like myself have to go through every single day?

Do you even know what it’s like for someone to have brain problems? I do. I'm 21 and I’ve been through 15 brain surgeries to fix my brain condition, and I am still needing to have more surgery in the coming months.  Each one of my surgeries has lasted on average 7 hours. Do you know how painful those 7 hours are for my family and friends? They’re the ones that are sitting in the waiting room at the hospital, refreshing their Facebook news feed to keep them entertained during the ordeal and nervously biting on every little last bit of their cuticles while messaging people who are wanting updates on how I am going.  It makes my heart sink every time they’ve waited for me while I’m in surgery.

How dare you make money off these innocent people? I, like many other people who suffer from a debilitating brain condition bought your app “The Whole Pantry.” I thought it would be good to try and make my lifestyle as healthy as possible. You said so yourself. You had terminal brain cancer. YOU survived, so I thought I could rid myself of illness as well. How idiotic I feel right now for believing you.  

How dare you blame your lies on your rough start to life. You give your excuse that you had “a difficult up bringing.” Although I did not have a rough start, I went through many problems in my adolescence- depression, bullying and severe acne just to name a few. But you know what Belle? I got help from my counsellor and my doctor. And today I am in a much happier place, with some good anti-depressants and acne cream to help me.

And now Belle Gibson, it’s time for you to get help yourself. Help to learn how to apologize to these people that you encouraged so much hope in, because you have upset so many people. My mum, a breast cancer survivor and a sufferer of Cowden’s Syndrome, which means she is at higher risk of  cancer. My Mother’s plastic surgeon who sees the devastating effects cancer can have on patients each day. He's furious. Myself - a fellow Cowden’s sufferer like my mum and a survivor of a severe brain condition.

I am ashamed to have wasted my money on your app. I am someone who believed in your lies. Someone that you instilled a glimmer of hope in.

Belle Gibson, all I can say is this to you.

How dare you?

ASHTON

#1000 SPEAK - NURTURING

Once again I am participating in the #1000 speak movement which continues to grow each month world wide. There are now over 1500 bloggers and blogs world wide and I am proud to say that CHRONICLES OF A LUMPY PERSON is one of these blogs.
The first topic two months ago was compassion. You may like to re -read my post at some time:  http://lumpyone.blogspot.com.au/2015/02/1000-speak-1000-voices-for-compassion.html

 This months topic is NURTURING and I have chosen to use one of the given writing prompts - How do you nurture your mental health in stressful times?- as my topic.

I find the writing prompt hard from the word go, but I persist regardless.

The word "nurturing" to me conjures up images of serene mothers nursing their perfect bundles of joys. It makes me think of cuddles, hugs, time with kids and love.

Every image that comes to mind is of nurturing my children - nurturing their brain through school and homework,their spirituality through religion,  their physical growth through dancing and other exercise, their social growth in relationships and their creativity through music, craft, singing.The list is endless really.

But surprisingly to me, not one image of me nurturing myself appears automatically. Every image I can think of is of me nurturing someone else. How therefore am I going to write about this topic? How can I write about nurturing my mental health in stressful times, if I can't think of one example of nurturing myself AT ALL?

Was I always this bad?

No, I think there was a time when I was better. I used to read lots, journal frequently and have an active social life. I attended church ( still do) to nurture spiritual health and was involved in youth committees and various clubs. Hmm - that's better, but big problem, that was when I was a university student back in the 80s. That's ages ago! What's happened since?

Well I got married ... and it was all about nurturing my marriage and my husband and our dreams . Good stuff! So, early 90s I was still into nurturing. Yes., but then we had kids and it became all about them. And somewhere in the myriad of events that constitute parenting, I stopped nurturing myself enough. I got too busy to worry about ME.

For those who follow my blog, my health issues are well documented. I have a rare disease called Cowdens syndrome which increases my risk of cancer tremendously. To date I have had numerous operations of a severe nature and basically been to hell and back. Yes, I've nurtured myself by ensuring my physical health was looked after, but my mental health...never gave that a moments thought. In fact I think I tried inadvertently to nurture myself by taking on more and more and more at work. It didn't work. My mental health declined at a rapid rate due to my lack of self care.

One day at work ( I'm a teacher), it finally all came to a head when I yelled at a student. It wasn't the

sort of behaviour I'm known for and I was shocked. I had never in twenty years plus of teaching yelled at a student in such a manner. I was disgusted with myself, but had the good sense to realise my body
was sending me the message that if I didn't stop, nurture and self care, I
was on the verge of a breakdown.

Other family circumstances finally decided that I needed this mental health break. My daughter became severely ill and required me to be around more often.  She needed to be nurtured and cared for.

I don't need to tell you that the last two years since her diagnosis have been very stressful and my mental health has taken a FURTHER battering. So, how have I nurtured my mental health in this time? Truth of the matter is that the answer is " very badly".

The best thing I have done is to see a psychologist regularly. She has been working with me to give me skills to manage the unique situation my family is under. The common theme is always self care. I need to self care - nurture myself! Really? How?

Learning to self care is a work in progress. Years of working to certain schedules and standards are hard to unlearn. For example - sleeping in! I have never, ever in my adult life had a chance to have a sleep in. Its always been get up for work, kids, school or just because its routine. When you are physically and mentally exhausted as I have been, your body is tired and you need to sleep. Sounds easy? Go to sleep you say! Well, not so easy when that little voice in your head tells you that you are lazy, that its not OK to still be in bed at 10am, that you need to be making the most of every minute.

Another example is spending money on yourself. I'll use my husband as an example because he is also making inroads into learning to nurture himself. He has had a sore shoulder all his life. He has done very little about this shoulder ever. Add in the stress of having both wife and child with chronic illnesses and pain exacerbates. He has been having regular massages and its helping so much. He is giving his body what it needs - care and attention...and hang the cost!

Here are a few things I am working on.

 I know what is important to me - myself, my family, my health, my religion. These are the values that are important to me - love, support, loyalty, care, respect. Working on all these at once is too hard so small goals are important and trying to line up my values and goals is important in achieving the goals. It motivates you...but its still hard, which I why I said " very badly" above. Actually that's a bit harsh - maybe I should say " a work in progress".

One of the reason this is a work in progress is because I am too quick to fall into past habits - eg other people's opinions still affect me too much and I have to learn to willingly accept these feelings without feeling bad that my values and goals differ.So in simple terms it might mean that in order to achieve my goals I may have to be mindful that other peoples opinions, actions, feelings may conflict with mine and accept that without feeling bad. Phew that's hard!
                                               
  Take my blog for example. Its another way my psychologist and I have developed of nurturing myself. I love writing and I feel great putting my thoughts down on screen or on paper. Not everyone feels the same about my blog and they all have their reasons. Their reasons upset me and make me feel worse and that defeats the self care I am trying to achieve. My challenge is to take their comments on board and register them simply as someone else's opinion and move on. As I said, its all a work in progress. Its hard.

Nurturing is not easy when your mental health is strained, but its not an unachievable goal. One of the books that really helps me is The Happiness Trap Pocketbook by Dr Russ Harris and Bev Aisbett. Check it out if you're interested.

Off to read other #1000speak posts. The collective wisdom of the blogging world awaits.

Till next time ...xxx

A COW AND A CALF

I am publishing the following with my daughter's permission. It is her decision to share this news and she has not been coerced by me in any way. My daughter is 21 and has an intelligent, strong mind of her own.

As many of my family and close friends know, back in January I got tested for Cowden syndrome. Cowden syndrome means that I am prone to getting lumps and am at a higher risk of getting cancer. It is also known to be the cause of AVM's to grow so fast (as demonstrated by the AVM that was growing in my brain.) 1 in 200,000 people suffer from this syndrome in the world. 2 of them in WA.
Yesterday I was the 3rd person to be diagnosed in WA with the condition. This now explains the reason behind my brain problems. Am I happy that I have been diagnosed with this condition? No not at all. But it's now nice to finally have an answer as to why I have been so ill for these past two years.
Cowden's is not curable. It is something that has been with me since birth. Why am I writing this on here? Because I want people to know that I'm ok. There's is no label stuck to my head that says that I have Cowden syndrome. I am going to live life to the best of my ability, as I have done so for the last 21 years. Thank you to my parents, sister, extended family and close friends for their love and support over the last few days. I will continue to ride this crazy train that we call life, to the best of my ability xx Ashton

Of course as her parents, Mark and I are shattered because we held on to a sliver of hope that the result would be negative. However realistically we are not surprised, the evidence has been mounting for some time.

There are some differences to my diagnosis and my daughter's diagnosis. I was 44 when diagnosed. She is 21. I spent a long time wondering why things were happening to me and wondering why I was different. She is diagnosed at a young age. She knows what the problem is and I can not begin to explain the relief this brings. It sounds ridiculous to use the word relief but not knowing hurts and drives you crazy. When you know, you can plan and be pro-active. Also, the doctors take you more seriously.

In the 5 years since my diagnosis the genetics field has literally exploded. There are things I know now that I didn't know 5 years ago. There are discoveries being made all the time. It is quite possible that within Ashton's lifetime there will be a way to manage this situation, this genetic condition, better.

Yesterday, Ashton joined the online support group COWDENS SYNDROME AUSTRALIA. Again it was her decision. She was welcomed into a warm, protective environment and promised support by most of the other 35 members in this country that also have this condition. She was overwhelmed by their kindness and offers ofhelp.

Most importantly, Ashton has me. This is not a condition that is unfamiliar to her as she has seen me live with it for a while now. I'd like to think that will in some way help.

I've often said that our life is in God's hands. I firmly believe there is a reason for all this and that HE knows what is best for us. My diagnosis and my various conditions have brought out qualities in me I never knew I had. I'm sure the same will happen for Ashton. Everything certainly happens for a reason.

Thank you for continuing to follow OUR story. I still can not get my head around the fact that when I started this blog, it was about me and my journey. I never, ever in a million years expected this twist to occur.

It helps so much to share the story. Please understand this is therapy for me and will continue, with my daughter's permission when necessary. I respect the fact she is an adult, at all times. I am also aware of the impact on my other daughter and husband and word my phrases carefully.

Please continue to pray for us. 1 in 200,000 and we have been struck twice.

Heads up and best foot forward.

Till next time...xxx

AN AUSTRALIAN AND AN AMERICAN... AGAIN

Hi everyone. My last Australia vs USA post was so popular I have decided to take part in another Ask Away Friday. Who knows, maybe this will become a regular part of my blog in between health dramas.

My new partner is Stacey L Gannett from http://thismommasramblings.com/ and she can be contacted on the following links:

Email - ssgannett@gmail.com

Twitter - @StaceyGannett

Facebook - This Momma's Ramblings

Pinterest - Stacey @ This Momma's Ramblings

So, remember this is how it works. I ask her ten questions which she replies to on her blog and she asks me ten questions which I reply to on mine ie below. Once again, it’s been heaps of fun to get to know somebody else, but please be sure to check out Stacey’s answers on her blog.

So, this is what I asked her…

  1.Tell me a bit about yourself and your family so I can get to know you.

2. Your blog is amazing. How long have you been blogging and what do you write about!

3. What has been your biggest achievement as a writer or blogger to date?

4. I've been blogging for a year and a half, but I learn something new every day. What advice do you have for me?

5. I'm Australian from a Maltese background. What are the first ten things that come to mind when thinking about Australia?

6. I realised from my other AAF experience with another American that my knowledge about American life is very much influenced by American shows. Which American TV show most accurately depicts your type of life?

7. I love to cook. What is your favourite go to recipe you can share with me.

8. Today as I write my questions it's raining outside. What are your favourite rainy day activities?

9. I'm coming to your hometown for 24 hours and you're showing me around. Where are you taking me and what are we doing?

10. If your next American president is female, how will this change America?

And this is what she asked me and what my replies were. Enjoy!

  1. I would also love to know more about you and your family.

Well, I’m 48 and married to Mark. We have two adult daughters – Ciara who is 18 and Ashton who is 21. We live in Geraldton in the Midwest of Australia, but 
the girls share together in our state’s capital, Perth (424km away) as they are both studying there. I miss them terribly but see them often. My husband is from a farming background and works for a company that distributes fertiliser to surrounding farms. I am a teacher, but am not working as a teacher for the time being.

 2.  I am a huge music fanatic...music of all kinds...What are your top five songs?

from the concert

Oh that’s going to be a hard one for me because I’m not a music fanatic. Having said that two weeks ago I went to a Rod Stewart concert as he is an old favourite and I had a real ball there with my sister and a couple of friends. So, anything Rod sings would be in my top five.

Rod Stewart

I also love Michael Buble and have also been lucky enough to see him in concert in recent years. I really can’t pick a favourite song. I adore his sexy voice.

Michael Buble

 

Newer stuff – my daughters are about to cringe because I will get something wrong but I do like Megan Trainor, Uptown funk by Bruno Mars and an up and coming singer in Australia called Dean Ray.

 3. You have unlimited funds, what would be your dream family vacation?

My dream vacation would be to fly to England first class and then tour through the UK and Europe staying in the best places money can buy. It would end in a trip to Malta to visit my extended family. (Oh…please God make this happen)

The lovely Marian Keyes

   4.  What types of books are your favorite kind to 
read? Do you have a favorite book/author?

I have always loved reading and my style of author often changes. I used to be a Maeve Binchy fan once and then became obsessed with crime fiction eg Patricia Cornwell books. I also like anything by Marian Keyes. For some reason, anything set in Ireland appeals to me. Lately all I seem to read are blogs. Maybe they are the new books!



PS – I have also written a book which I am hoping to get published.
 

    5. If you could go back in time and interview any historical figure, who would you choose and why?

Princess Diana

Mmm if she would talk to me I would speak to Princess Diana and really find out what happened in her life. She and I shared a birthday and I remember her every year on the day. In a mad twist of fate, she passed away on my husband’s birthday, so we remember her on that day too.

   6.   What dessert will you go for above any else?

A pavlova

I don’t eat dessert too often because I watch my sugar intake as I am already overweight. However, I do enjoy pavlova and lemon meringue pie. Pavlova is a 
meringue creation designed to commemorate the visit of Russian prima ballerina, Anna Pavlov. Most Australian parties will have a pavlova these days and the photo below will be the one I made for Easter Sunday lunch. Anything with lemon is probably a close favourite.

   7.  What’s types of hobbies do you enjoy?

Blogging is my one and only hobby at the moment! My blog CHRONICLES OF A LUMPY PERSON keeps me very, very busy as does networking. I love meeting new people from all over the world and have some special friends everywhere thanks to blogging.

http://lumpyone.blogspot.com.au/ ( please visit me)

    8.  What is one thing that blogging has taught you about yourself? 

It has taught me that I have an ability to write and an ability to keep people engaged and sometimes even make them laugh. It’s also taught me a way of relaxing in what has been a traumatic few years in my life. I actually find peace when I am writing.

Goal - inner peace

   9.   I am a lover of tattoos! Do you have any? Would you get one if not?

I HATE TATTOOS but in a bizarre twist I actually have two. In 2008 I was diagnosed with breast cancer and over the next two years had both breasts removed and reconstructed. The nipples were also reconstructed and the areolar area (the area around the nipple) was tattooed on. Nobody would know it’s not the real thing. They have actually faded a bit and need redoing, which I may do as I can’t feel pain in that area at all. So, there you are…I might get another tattoo!!!

stolen meme

10. What is one guilty pleasure you enjoy too much to give up?

A sleep- in anytime the opportunity arises or a nanna nap in the afternoon if I feel like it. Today is a rainy, miserable day so a lot of blogging and napping has been done and very little housework – oops!

So that’s it! Think I got them all.

Enjoy…till next time…xxx