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Sunday, 4 December 2016

TAKE THE GOOD WITH THE BAD

Lately I just haven't been bothered with my blog. It's odd isn't it? After 3 years of writing and telling my story, I just seem to have lost the interest to share.



But I've realised how dangerous that can be for me. I've realised how therapeutic and necessary blogging is to my mental health and I've also realised that every story has good and bad parts to it, and sharing the good is as important as sharing the bad. Have I confused you yet?

So here are the good and the bad from the last month.

  1. My stomach is a mess. It's formed angles where food is lodging before making a reverse journey. Apparently the scar tissue from all the procedures has caused this. Most likely back to theatre for me in the New Year. ( BAD)💔
  2. I've now lost 48kgs ( GOOD) and thanks to my useless as hell PTEN gene can now feel every lump on my body. The broken PTEN gene is what causes my Cowden's syndrome. Biggest problem area under my right ribs. Joy to the world...more theatre/ surgery looming. ( BAD)
  3. I've been blessed with some full time work for 3 weeks. My body is exhausted and unused to full time work, but I am pushing through because the money is much needed before Xmas. (GOOD) 
  4. I've taken up crochet, a craft I used to love in my teens. It was a bit hard at the beginning because of my tremor but I swear it's helping my fine motor skills. I actually threaded the sewing machine at school the other day. Unheard of!!! ( GOOD).
  5. My youngest daughter got into a prestigious musical theatre school. I am so proud of her hard work and resilience. So excited for what life holds for her. ( VERY VERY GOOD).
  6. I'm going back to Bali, my happy place. My husband says we deserve it so I'm not arguing. The place, the people, the food, the noise and the sunsets ground me. Again...so excited. ( VERY VERY GOOD).
  7. My children are coming home for Xmas. ❤️❤️❤️❤️❤️❤️❤️❤️❤️. We don't need to travel for Xmas. ( GOOD) 
  8. Every Xmas decoration I've ever owned or made by the children as they grew up has been accidentally binned. I've had to buy new baubles to dress the tree 🌲. It doesn't feel the same or look the same. It's like our stories have been stolen from us. ( BAD)
  9. I've had a mini spring clean ... at the start of summer! All has gone to charity. It feels wonderful to have the extra space, but again some of the stuff being donated feels like part of our story we have lost. It had to go though as we are bursting at the seams and I don't want to become a Today Tonight story!!! ( GOOD).
  10. My eldest daughter is looking the best I have seen her in years. She is happy and looks fit and healthy. More tests in the New Year but at the moment # Wearebeatingcowdens (GOOD).
So there you have it folks. The good 😊 is exceeding the bad this month. About time we had a good run!   

Till next time... xxx
ST

Saturday, 12 November 2016

YOU DON'T ALWAYS GET THE BEATER

YEARS AGO when I was about seven my Dad decided to take me to visit my Nanna. I was not
impressed. I loved my Nanna but that morning my eyes and my tummy were engaged elsewhere. Mum was making a chocolate cake. Her beautiful Kenwood mixmaster was set up on the kitchen bench ready to go and she had promised I could lick the beaters when she'd made the cake. So I wasn't happy about giving up my beaters to go visiting. My Mum ( probably sensing she would be one child less for a few hours) promised to save the beaters for me and happy with that deal I took off with my Dad.

A few hours later Dad and I returned and I raced up the stairs in anticipation of the chocolatey goodness awaiting me. I have never forgotten the sight that awaited me. There sitting on the floor covered head to toe in my cake batter was my five year old sister Michaela. She had (when Mum wasn't looking), reached up for the beaters and sitting casually on the kitchen floor has licked them dry.

I screamed blue murder and Mum came running. I was inconsolable. Why did she have MY beaters? Mum raced into the room, took one look at my sister covered in batter and collapsed laughing. How could she laugh? My pre established rights to that beater had been thwarted. This was a scandal of national proportions made only worse by Mum telling me to " get over it". Oh the injustice of it all.

So at age 50 why am I bringing up this story? Apart from the fact that I'm still harbouring a grudge, it's been obvious to me this week that my story is symbolic of so many aspects of life. You don't always get what you believe you should get.

For example I never imagined that after working so hard to climb the ladder in my teaching career, that I would be back to substitute ( relief) teaching at my age. For those who don't know my story, I was forced to give up my full time job to deal with illness in both myself and my adult daughter. I needed a more flexible job situation, one where I could easily take time off  if I needed to. Relief teaching was ideal. Not where I wanted to be at this stage of  my life but ideal for dealing with what life had handed me. You don't always get the beater.

A 12 year old girl shared a story with me this week. Her eldest sister had given birth to quadruplets and soon after her partner had walked out on her. Not surprisingly she was struggling with the enormity of four babies and everything that goes with them. To help her, the girls' Mum takes two babies at a time home with her to give her eldest daughter a break. The babies are rotated so they all get to spend time with Mum.


I couldn't help thinking about this Mum/Nanna. She has a 12 year old herself and was probably thinking she could see the light at the end of the tunnel. I wondered  if she was dreaming about a child free time coming soon, about no school runs, no lunches, no uniforms, when suddenly BANG she became a Nanna to four...and her daughter needed her...and it felt like she had to start all over again. Poor woman! I'm sure it's not what she had in mind. You don't always get the beater!

There are so many other examples I could share. I have been fascinated by the American elections this week and disappointed that Hillary didn't get the beater. It was expected she would have it, but Trump stole her beater and like my sister licked it dry. You don't always get what you feel is rightfully yours. Life inevitably goes on and we learn to accomodate the changes.

I'm off to make a chocolate cake.

Till next time...xxx


Monday, 24 October 2016

ZAP ZAP ZAP

When you have Cowden's syndrome and you grow lots of lumps, you can bet your bottom dollar that sooner or later you will be having a lump of some sort tested. Today is that day and at the moment I'm having a stand off with a glass of water, which is glass 1 of 6 that I need to drink before having a cat scan in two hours time. I have such a little stomach that I'm already struggling and I haven't even drunk one! Oh dear. Sip, sip.

I arrived early for the scan because I had a few questions. It quickly became obvious that the lady dealing with me was not in the mood for questions. This attitude when it happens is so hard to deal with. Unfortunately it happens frequently.

I wanted to know if the dose of contrast dye was calculated on your body weight. The reason I wanted to know is that I am 46kg lighter than last time and didn't want any possible problems if they grabbed the dose off my last sheet. She answered my question but literally stopped short of rolling her eyes in frustration at me. It was a standard dose by the way.

I asked why I needed to stay for 45 minutes after the scan as I'd never had to do that before. This time I did get the rolled eyes. Apparently it's protocol. Hmmm lady I've had more of these than you and I know its not, but I'll be quiet because otherwise I might need to explain what a supreme effort coming here is. I might have to explain that this time a year ago I almost died in this hospital and that today is the first time I've stepped back in here and brave as I am I don't want to be here a minute longer than I have to, let alone 45 minutes.

While positioning me on the scanner bed, my patience finally ran out. I had to lie on my back with my arms extended above my head. It's a difficult position for someone who has breast reconstructions and it usually takes me a minute to get comfy. She was having none of it. She grabbed my arms trying to pull me into position. I asked her to be gentle as it is uncomfortable  to be in this position when you have breast reconstructions.

Her tone changed immediately. Yes telling her I had reconstructions was indirectly telling her I once had breast cancer. She became human. I told her I had Cowden's syndrome which unsurprisingly she had never heard of and she said it was great I was still around, which is a standard reply when people don't know what to say. I shouldn't have had to share all this to get her human side.

It's quite surreal when the scanner is blasting you. I know that my condition isn't helped by the radiation being fired through me. But I also know that without it, the tumours invading my body can't be monitored and they need to be monitored because without my padding I can feel them more and they bloody hurt. And when something hurts you worry and think the worst, even a hundred lumps later.

The dye starts. I can feel the metallic taste in my mouth and then the familiar warmth invade my groin area. It seems to last longer than usual but I don't dare ask another question. I am taken off the bed and into the waiting area to serve my 45 minute sentence.

At the end, a young man whom I remember from my previous scan comes over. He says " welcome back" and asks how I've been since last time. We make pleasant chitchat for five minutes and he then ushers me into the treatment room to remove my cannula. I jokingly say that his colleague thinks I'm a " pain in the arse" because I ask too many questions. He chuckles and tells me she's the biggest pain in the arse going. I laugh and my faith is restored in people.

Moral of my story- ask as many questions as you like. Nobody knows your condition and your story as well as you do and you have every right to information and knowledge that informs you and eases your mind.

Now to wait for results.

Till next time...xxx                            


Wednesday, 12 October 2016

TRUST ME I'M A DOCTOR

My entire lifetime is littered with experiences of having to place my trust in the medical profession. You walk into their rooms, you tell them what's wrong and then their super human brain works it all out, and they tell you what they're going to do for you. Usually then you shrug your shoulders, go " what the hell, I have no choice" and agree to trust them to do what they say, because you need the job done.

To me trusting a doctor had always been a given. My Dad is a doctor and I grew up around doctors. To not trust a doctor would be like telling my Dad I didn't believe in his skills, his judgement and his wisdom. Till last year it never dawned on me "not" to trust anyone in the medical profession.

When I trust a doctor, this is what I expect:
  1. That they know what they are talking about.
  2. That they have the skills to do a good job.
  3. That they treat me ( and every other patient) as the most important patient ever.
  4. That they don't rip me off. I still need to survive after the surgery and I will need money.
  5. That they treat me with respect and that includes my after care, my worried phone calls and a year later if necessary.
A year ago a doctor who operated on me broke most of my expectations. The surgery was a mess and it left me in hospital for six weeks often fighting for my life. It was the worst period in my life and when you remember that I have had two cancer diagnoses, you might start to get a feel how bad this period in my life was. It was awful.

Its a hard thing this trust business and one none of us can really avoid. If you want a haircut, you need to trust the person with the scissors. If you want a meal out you need to trust that the chef is doing the right thing with regard to food safety. There are so many examples. You get a driving license and you then need to trust others driving around you to do the right thing. You need surgery and you have to trust the doctor.

In the last twelve months I have really struggled with the broken trust issues from this doctor. As a result I have become nervous, on edge and quite panicky about anything medical.When my daughter had to have surgery with a new doctor in recent months, it just about finished me off. I didn't know this doctor or anaesthetist. How could I trust them with my child? Cue a full blown panic attack. (Incidentally surgeon and anaeasthetist were excellent).

As a person with a condition requiring not one but an army of doctors, it hasn't been a good idea to be so doctor phobic. I have no idea why its got so bad, but I know I've been actively avoiding GP visits and blood tests especially. And visiting people in "that" hospital, forget it!

In the last week a few things have made this issue come to a head. Firstly one of my specialists rang me checking why I hadn't had my bloods done. He was actually concerned. ( Note to self - doctor cares and can be trusted). Then my psychologist told me that if I let this continue, I would become more of a victim than I already was because of a dud doctor. I like her because she tells me straight.

So, I am officially making an effort to move on from this issue. I am going to remember all the other doctors and medical personnel I have been able to trust and I am going to try to move on. Its another of those situations I really don't have a choice in.

Have any of you had any success with learning to trust again? All tips welcome.
I HOPE NOT!!!

Till next time...xxx



Monday, 3 October 2016

COWS WITH BREAST CANCER

You'd have to be a real hermit to not know that October is breast cancer awareness month. Social
media is full of advice on what to do and what not to do and the colour pink ( which I can't stand) is everywhere. I hate the colour pink being associated with breast cancer because it's a traditionally girly colour and this makes me feel sad for the men who get breast cancer. Yes, being male doesn't exclude you from getting breast cancer and if you're one of those poor blokes, the last thing you want to feel is that you've got some girly disease.  Maybe the colour should be green.

It's been almost eight years since my breast cancer diagnosis and only lately have I been able to think about it without shaking all over. Maybe the only reason here is that life is a series of events and other things have become more important. I can't be sure as to the reason but I am sure that I no longer worry as much about breast cancer. I hate that it happened. I loathe my saline fake boobs. I hate the way that one is higher than the other. I feel like a freak without nipples. BUT, the cancer itself no longer fills every waking thought. Everywhere I look this month breast cancer charities are actively encouraging people to fundraise so that they can continue to raise awareness and support people. Real people like me have received financial support or services because real people like you donate money. I'll save my hugs and kisses till I meet you. Just know that it helps.

One of the things that does worry me however is Cow related. If you are new to my blog you may not realise I have Cowden's syndrome (CS), a rare genetic disorder that increases your risk of tumours and cancers. It's also called PTEN Hamartoma Tumour syndrome ( PHTS) cos somebody decided we needed four words instead of two. Same same just wordier my friends. Anyway, the reason I'm worried is that nowhere in all the advertising this month will you see information about CS and this is concerning on two parts. One is that CS carries with it a higher than average risk of breast cancer and two, according to Professor Charis Eng ( guru of all things CS), the condition is significantly under diagnosed due to doctors' lack of knowledge about visible signs which may suggest a diagnosis.

Now I have a friend in the UK who is pretty cluey on all things CS. She writes:

Benign breast disease is thought to be common in women with CS/PHTS, so women could be turning up at breast clinics with clear evidence of CS/PHTS on their skin, and/or oral mucous membranes, but that evidence missed due to lack of knowledge about CS/PHTS. Those women are then denied the opportunity to have regular breast cancer screening or prophylactic surgery. 

So, basically what she is saying is that there are certain lumps and bumps on the skin and in the mouth that may indicate you have CS and if you do then you may have an increased risk of some cancers like breast cancer. So you need to know this stuff, but don't panic and do get a doctor involved because you might need a biopsy to diagnose some of these growths.

So if you want to impress your doctor or intimidate him because you know something he doesn't, here are a few new words to google the hell out of. The most common skin signs are trichilemmomas (mostly found on the face), keratoses (mostly found on the hands and feet) and papillomas (mostly found on the oral mucous membranes). There are some other less common skin lesions, but let's not worry too much about them for now.

I hope I haven't scared you. Actually that's not true, I hope I have because then you might check for lumps and check for growths and see a doctor. Better to check stuff out if you have a concern.

And before I go I have one request. Breast cancer agencies don't publish information on CS because it's rare ( 1 in 200 000). Professor Eng is convinced it is likely higher. So please help me and my Cow friends get the word out by sharing this post. Would really appreciate it.

Till next time...xxx
Moo

Wednesday, 28 September 2016

LESSONS FROM BALI

This has been the longest and coldest winter in memory. I'm sure there's some good scientific reason for this, but I'm past caring and just want it to end. Everywhere you go people are whinging about the weather, because it is almost October and normally everyone would be in short sleeves by now. But obviously not this year. So here I am with jumper, jeans, boots and hot mug of coffee and not a bit of sun all day. It's positively un- Australian to have winter go on for so long.

In the search for warmth, last week my husband and I finally got to take the holiday we missed out on last December when I was ill. Western Australia ( home of the never ending winter) is 3 1/2 hours away from Bali, Indonesia ( home of sun, warmth, swimming, cheap cocktails and scrumptious food). It actually is so close it's ridiculous! When we stepped out of the plane the heat hit us straight in the face. It was fabulous and my body warmed instantly.
 

There is something magic about Bali. I have been three times now and each time I have come away a better person. It's the people who do it to me. They are so humble and so happy. When you say hello to a Balinese person, their face lights up with joy and they reciprocate warmly. One lady told me the secret to happiness is to be grateful and enjoy what she has. She never wishes for more or aspires to have more, she simply enjoys what she has. That's one hell of a lesson!

Another lovely lady by the name of Ayu told me the Balinese are happier than Australians because they take their time. She said Australians are in too much of a rush and walk too fast. She also said the proper way is to walk gently, stop, have a look, walk some more, stop, have a chat and repeat. Apparently, you get there...when you get there! I love it!

Our hotel in Bali
                  

Bali really is an exercise in humility and learning to appreciate what you have. I met people who earn less in a month than what I can earn in a day. But, they are happy and just grateful to have a job. I learnt that most young people get jobs to support the family income, not buy the latest " must have" item. They travel on their scooters in bad traffic and sometimes torrential rain. They get wet from head to toe and still offer to get you another drink with a genuine smile on their face. Yes, it did me good to hang around these people for a while.


On one occasion I was sitting in a spa having a foot massage. After half an hour of pure bliss, I was told that to balance out ( so I didn't fall over apparently), my shoulders and back needed a quick massage. They got no complaints from me!  My tshirt was whipped off in record time and I sat with my back to her listening to the sudden flurry of chatter with her boss. I asked if there was a problem and she asked me what the scars on my back ( breast reconstruction scars) were. I immediately tensed up and sensing that, she reassured me everything was ok. I don't know what I was thinking but possibly the thought crossed my mind that she wouldn't want to touch me. Maybe I was seen as being diseased.

What they were actually doing was discussing the best natural treatments for me to have better health. Some I had not heard of but celery tea and pomegranate leaf tea are apparently amazing traditional treatments they swear by as well as coconut water (which I think I'll give a big miss to because coconut and I dont get on). The point for me was that these women were completely concerned about my welfare. They could have made more money off me with their advice but they didn't. And that's how it was pretty much everywhere. In another spot, another woman, noticing I had an allergy rash on my arms disappeared into the kitchen and came back with a tube of something she started rubbing on me. It was coconut oil and again apparently it works wonders if the person you're rubbing it in isn't also allergic to coconut! I was overwhelmed by the kindness regardless.

Hope the post Bali glow continues for a while. Lots of lessons in slowing down and being nice to each other have been learnt.

Till next time...xxx






Thursday, 15 September 2016

BEATING COWDENS SIDE BY SIDE


There have been so many times in the last
ten years when giving in to Cowdens syndrome would have been so easy. I could have quit my job at the first sign of disaster. I could have curled up in a ball and totally withdrawn from society. Or I could have sunk to even further depths of depression than I did. But I didn't. The psych calls this resilience, and she says I'm the queen of resilience. I have to admit, it doesn't always feel like that, but that is what she says so I'll wear it.

In the same way I've tried to teach my children that giving up is not an option to take lightly. If you want something you work for it. If you have a goal you work towards it. And, you don't give up unless you've exhausted every viable option. This has been an especially important lesson for Ashton, my eldest, who was also diagnosed with Cowdens syndrome early last year.

Part of my ability to cope comes from being of a certain age. I was therefore concerned in 2013 when Ashton was struck down with a debilitating brain condition. It's hard to expect a 19 year old to understand and to fight and to not give up. I remember telling her through each of the 16 brain procedures which ensued, that we would beat this and that her Dad and I would do everything in our power to help her through this. But from day to day, we never knew what we would find. It's hard to explain to someone who hasn't lived her life yet, that life is worth living for.

Anyone with a debilitating medical condition will tell you that life is never, ever the same again following diagnosis and that you will change as a person too. Friends who support you "en masse" at the start often dwindle with time, as they can not understand why you are not better yet. They run out of conversation and simply move on. Life therefore can get lonely but  you do learn to appreciate those that are there for the long haul with you more.

Doing day to day activities may become a challenge. In my situation working full time was no longer viable so casual employment became my income. Not the best pay but better than nothing! In Ashton's case, her brain procedures left considerable scarring which induced epilepsy. This resulted in the loss of her drivers licence, a bitter pill to swallow for a young woman. She could have crumbled, but instead she chose to find alternatives. It's how we have to roll.

The hardest challenge for my daughter in the last few years has been her studies. When all hell broke loose she was in the second year of a Bachelor of Arts degree. Fighting for her life she had no option but to withdraw. This was devastating for someone who had dreamt of going to university since childhood. But she fought, improved and returned...many times. Yes, relapses hindered her BUT she always went back, did a bit more and passed another unit. At one stage, after two craniotomies, she almost gave up, but she pushed through and would not let the condition win.

Tomorrow is a very special day in our family because tomorrow Ashton graduates from university. Despite extensive surgery, she has completed her degree and will stand up with other graduates at the University of Western Australia to be recognised. I am so proud I fear I may burst. I want to tell everyone how amazing a feat this is and how in the face of considerable adversity she has won  a gold medal. But instead I will sit quietly in the prestigious Winthrop Hall ( where I once graduated)
and cry a few quiet tears of joy and thanks.

We have this condition for life. There will be lots more ups and downs, but tomorrow will be a definite up. Tomorrow we are beating Cowdens side by side.

FROM THIS:


TO THIS




Till next time...xxxST
















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