BALI OR BUST?

I need a holiday and so does the husband. In fact he needs a holiday more than I do as the hours he

has been working of late are totally and utterly ridiculous. He assures me that the busy season is coming to an end. It had better be or I may become the first woman ever to be charged with kidnapping her husband.

I'm so envious of people who decide on a holiday, book it and go. I've heard of people who book today and are by a pool sipping cocktails within hours. How is this possible? Planning and taking a holiday when you have Cowden's Syndrome goes something like this:

1. We need a holiday. Let's check the calendar and see which dates are not taken up by doctors' appointments, checkups or hospitals. 
2. As my daughter also has Cowden's  I need to check her medical schedule too as she usually needs my support.
3. I've identified a " window of opportunity". Yahoo! There is actually a week no doctor wants to know me or her.
4. Where to go? Vietnam would be nice.
5. Google hospitals in Vietnam, just in case I need them. Not convinced anyone there would know about Cowden's syndrome so not really a safe choice.
6. Change location to Bali. Hospital situation still no good but only 3 hours flight to mainland Australia. Decide to risk it as have risked it before to this location.
7. Book flight.
8. Fill out "1 million" forms to attempt to get travel insurance. There is no box to tick for Cowden's syndrome or any box for anything close to my condition. I tick the box to ask some one to ring me.
9. I notice that if family member remaining home has medical condition that may require you to return home in an emergency, it needs to be declared.
10. I fill out another " million" forms about daughter's condition and tick the box again.
    
11. Accommodation and flights booked, but not insured.
12. Specialist rings to see if appointment can be moved back a week. This clashes with holiday so no go. Appointment rescheduled for 3 months time. I really needed that appointment.
13. Insurance writes back. They need more information from GP. Visit GP for said information. GP writes what I wrote in first place, but signs it doctor.
14. Insurance for me declined. Insurance in event of daughter requiring help possible, for the cost of a small island nation. Looks like I'm travelling uninsured once again, unless I break a leg or fall off something, like normal people do.
15. Packing medication. Going to Bali and they're a bit " tough" on drugs. All medication to be in original box for checking if needed. I take 6 different meds and a few vitamins. The boxes fill my case and I feel like a drug mule. Visions of every drug related news programme fill my mind.
16. Pack large sunscreen as no wish to increase my already greater melanoma risk. Now I really have little room left in suitcase.
    
17. Worry about allergies so pack large Phenergan, in original case of course. One holiday with no Phenergan ended up in Malaysian hospital. Would like to pack sleeping pills but decide to medicate with alcohol if desperate. It is a holiday after all.
18. Pack snacks in case of food intolerances to Balinese food. Unpack snacks as need to pack clothes. Remind myself Bali has supermarkets.
19. Chastise myself for not sending medic alert paper work off. Check if possible to receive medic alert before departure date. Pharmacist laughs and I take that as a no.
20. Compile list of my doctors contact numbers back home, in case of emergency. It's happened before so don't tell me to stop worrying.
21. Day before flight lie awake regretting decision to " risk it" in Bali. Worry about everything under the sun that could go wrong. Imagine myself on Channel 7 news as an emergency case flown to Perth.
22. Get on plane. 
23. Worry about daughters back home, the one with CS and the one without, for whole week I'm away. What are they not telling me?

I'm sure you all think I'm a hypochondriac by this stage. 

Only another person with a chronic condition will truly understand that it can never be " book, pack and go" for us. Anyway, I'm off to google hotels in Bali. Despite everything to worry about, we did have a nice time eventually.

Beautiful Bali

Till next time...xxx

SOME MISTAKES YOU JUST DON'T MAKE

Last week during my 50th birthday party I spent some time cutting up the beautiful cake my sister in law had made. She had used black dye on some of the fondant and as I cut the cake my hands became blacker and blacker. Not wishing to ruin my beautiful birthday dress, I took off into the bathroom to scrub my hands. A couple of minutes later my friend Carole stormed in and asked what I was doing in there. Thinking that she was making conversation as it was actually pretty obvious, I just laughed. But she persisted and told me that I needed "balls" to be in here and I needed to come out. It still took a bit longer, but eventually when she pointed behind me to the latrines the penny finally dropped. I was in the male bathroom. Thank goodness it was empty at the time. When I finally exited the bathroom, there was a crowd waiting to give me a rousing clap. How mean! It was a simple mistake!  

According to http://au.reachout.com/the-truth-about-mistakes making mistakes is a normal part of life and taking responsibility and facing up to our mistakes is a great way to learn and avoid doing the same thing again. Did I learn anything from my bathroom adventure? Yes. I learned that when I'm focused on something, I tend to have blinkers on - not a good habit really. Imagine the embarrassment if the bathroom had been full. According to my husband, I make these mistakes often. Leaving the lights on is his pet peeve. The reality is that I am so focused on what I am doing next, I just forget to turn those lights off! OK it needs to stop. I admit it. I am at fault here and I hereby promise to slow down, stop, think and play my part in reducing the cost of the power bill. 

Let's get serious now. Some mistakes are worse than others and some mistakes you just don't make.

Yesterday I drove home from the city. It is a four and a half hour road trip that can be quite tedious, but was actually lovely for a change. I saw lots on the way - paddocks full of stunning yellow canola crops, an emu feeding in an area that was rejuvenating from a bush fire  and crisp clear ocean views. It wasn't all nice. I also saw people driving like idiots possessed, driving with heads down (obviously checking out their phones) and people texting.These people are making huge mistakes while deliberately and intentionally breaking the law AND BOY AM I CROSS.

The first day I ever used a mobile phone, I needed to travel on the freeway in Perth. It rang while I was on the freeway and I was so excited by my first call, I reached down to answer it. Please be aware it was still legal to do so at the time. The next five minutes were madness. I made mistakes with my driving that put me and other drivers at risk. At one stage I even missed an exit and had to then go miles out of my way to return to my route. It was an eye opener and one I never repeated. I didn't need a law to tell me what to do. While driving, you do not use a phone.

Now usually mistakes are not a reflection on you as a person. I would hope that people don't judge my value by the fact I hung out in a male bathroom and left all the lights blazing in my house. But let me tell you straight. I am judging the folk who crossed my path yesterday and it's not in a good way, because how many times do you need to be told. The news, social media, magazines, newspapers etc are littered with stories, rules and laws about driving. There is no longer any excuse. These mistakes are serious and need to stop.

If you are one of the many people who still "play" with their phone while driving, stop it before you kill yourself or others. And quit making excuses for yourself. You do NOT have to take that call or reply to that text or find out what's happening in the world while driving. You just don't.

Usually, if you make mistakes, you acknowledge them, fix them and move on. It's actually not healthy to dwell on old resolved mistakes. But if you are one of the many still doing the wrong thing on the road, I would encourage you today to dwell and keep dwelling.Think about how quickly life could change. Then chuck your phone in the back seat out of reach while driving. Or better still put it in your bag and put the bag in the boot of the car.

I'm off to check that all the lights are off in the house. Let me know when it is safe to go back on the roads.

Till next time...xxx

The view on the drive home

TILL DEATH US DO PART

The other day while in a local supermarket I bumped into a woman I know and we started chatting. I

mentioned that the husband and I were coming up to our 25th wedding anniversary and she seemed genuinely shocked. Apparently (according to my friend), at the age of 50 I should be on my 2nd or 3rd relationship by now. Hmm...really?

25 years ago, two weeks after my 25th birthday I married my best friend. We made promises to each other and ended these vows with the words " till death us do part". We never imagined that our marriage would actually be littered with near death experiences which would test those vows. But as the regular readers of this blog know, this has been our lot in life with two people in this family with Cowden's syndrome.

Every medical challenge came and went and each time we braced ourselves, cried, prayed, yelled and wondered why us. Each time our relationship was tested and some times it was worse then others. Sometimes it would have been easier to walk away. From my perspective I was causing my husband pain and it broke my heart to see him suffer as he was. I often wanted to leave and protect him from further anguish. From his perspective, he couldn't fix it, it was horrible to see someone you love go through so much and it would have been so simple to get in the car and drive off. But that never happened because to give up on each other was never an option. 

A cousin of my husband said recently that she was surprised we were still together after all we'd been through. In reality the reason we are still together is because of all we've been through. It's made us tougher and more resilient.

But don't get me wrong here. Don't for a moment think we don't argue, disagree or fight. We are both hot blooded and prone to being argumentative. We both have faults. But what we've learnt is that these things are "small stuff". We've experienced the hard stuff well and truly so we know the difference. We've stood at the side of the big, black holes, contemplated jumping in and never did. After experiencing and surviving those times you learn to not sweat the small stuff. You yell and scream at each other, kiss each other goodnight and move on. You work arguments out because once upon a time you promised " till death us do part" and the "small stuff" isn't death. Not even close.

So because 25 years is a long time and my supermarket buddy thinks this is fast becoming a rarity, I thought I'd share with you what works for me. Maybe you can borrow or use one of my tips with your  partner. ( Please turn on your sense of humour before reading further).

1. Cultivate a deep belief that you're always right and that they are deeply misguided in thinking they are.
2. Learn to listen but not hear. I tend to use this when my husband is explaining at length why the car isn't working and how he's fixing it.
3. Hide the chocolate and wine for your own personal emergency use.
4. Occasionally do what makes them happy. ( Hi I'm Suzi and I love long drives in the countryside...wink, wink).
5. Drag them away for time out regularly. Leave town together and book into a nice hotel room that someone else has to clean. Eat nice food that someone else has to cook and use multiple plates that someone else will wash up.
6. Laugh and pull faces when partner is angry over nonsense. Please make sure it is nonsense first. Re- read point 1. Works with grumpy teenagers too.
7. Demand hugs and say " I love you" regularly.
8. For really serious " small stuff" ( eg he ate your chocolate stash), go through in your mind how you would kill him. Do not enact this plan. I repeat DO NOT ENACT THIS PLAN.
9. Hide occasionally and recharge alone. I love a coffee shop visit, my husband a massage.
10. You don't have to have the last word. Learn to shut up because remember point 1.

Happy anniversary sweetheart. I love you. I really do, TILL DEATH US DO PART and possibly for a long time after.

Till next time...xxx

ST

40 THINGS MY FORTIES TAUGHT ME

Tomorrow week I turn 50. Yikes! That sounds so grown up and so mature and so old! Maybe we've been calculating incorrectly. I can't be 50!

My forties have not been fun and I have to stop this insane notion in my head that once I turn 50 the " bad" times will all end. I may as well accept that they probably won't, because I have a life long medical condition. But a girl can hope can't she that the next ten years won't be so horrendous?  I'm due a bit of a break.

While I wouldn't wish my forties on anyone I have learnt lots about myself from a great teacher called LIFE. Not sure how useful some of it is in the long run, but hey every bit of learning is good isn't it? ( scratches head and ponders question).

Anyway sorry if I'm about to bore you but I felt a stocktake was necessary. Sound the trumpets. Here are 40 things I learnt about myself, my body and my condition in my forties:

1. Be careful what you wish for. I wanted smaller boobs all through my thirties and I ended up with a mastectomy on both sides in my forties. Not even remotely funny.
2. Some doctors are better dealing with people than others. Ironic really because where would they be without people? 
3. Some medical ancillary staff are too big for their boots. It's ok to stand up to them. Nurses on the other hand must be worshipped. 
4. I learnt that all sorts of strange procedures exist. Eg ever had a hook wire procedure? I have. Wonder if I could put it on my resume... " I am experienced in hook wire procedures".
5. A diagnosis of "benign tumour" is the most uplifting thing you will ever hear. You will want to kiss your doctor, even the ugly ones.
6. A diagnosis of " malignant" will crush your very being if you allow it. Don't allow it.
7. Having your breasts removed will result in grieving, even if you weren't a fan of them to start off with.
8. Your partner will continue to miss your boobs long after you've gotten used to the idea they've gone.
9. The cancer didn't kill me but having drains inserted for 10 weeks almost did. Drain pain is a thing, a bloody painful thing.
10. You never recover from having cancer. You just learn to live with the fact you've had it. You never stop wondering why you?
11. Breast reconstruction is hard work for you and your surgeon. It's easier to build a house than two boobs.
12. Surgeons are so clever they can make you new nipples.
13. Fake boobs are uncomfortable to sleep with. They can try to suffocate you because they are distant relations of cannon balls.
14. Fake boobs act as anti drowning devices in a pool. 
15. Scars don't all look the same and kids will assume you attempted suicide if your thyroid scar is obvious.
16. The strangest, most unusual people will be there for you when you announce you have cancer, but the least expected people will let you down.
17. At 43 I learned about Cowden's syndrome. Cow what?
18. I learned that when doctors join the dots, eventually you get answers.
19. Saying goodbye to your uterus is hard. You may not want more kids, but that doesn't mean you're ready to give it up.
20. Saying goodbye to periods is a divine experience.
21. I learned that if a doctor says I will recover quickly, I'm in for a rough ride.
22. Doctors with alcohol in their rooms are a worry.
23. Doctors who tell you that you have cancer and then move you on in under 5 minutes are never to be trusted again.
24. I learned that some government workers need convincing that breast reconstruction is not a cosmetic procedure.
25. Finding out a second time you have cancer is equally as hard as the first time.
26. I found that if you have Cowdens syndrome, doctors will basically think you have made the condition up and it must not exist.
27. Colonoscopy preps are gross. Lemon cordial in them makes them bearable.
28. You can have polyps in your forties. You can actually have a garden of them.
29. Anaesthetic wears your mind, body and hair out.
30. Anaesthetists who call themselves your " sleep doctor" should not be trusted.
31. Female specialists are harder to deal with than males.
32. Removing your ovaries will send you into the biggest hormonal spiral you've ever encountered.
33. Its OK to have depression and it's more than ok to talk about it.
34. Antidepressants are God's gift to those who need them.
35. Stomach surgery is not an easy way of weight loss and anyone who thinks so is a fool.
36. Losing lots of weight doesn't make you any happier. It just makes you thinner.
37. Chocolate tastes bad after stomach surgery, but salty things are yum.
38. I'm more resilient than I ever thought possible.
39. The greatest pain ever is not childbirth or organ removal or cancer. It's watching your child go through a medical nightmare and being unable to fix it.
40. It's easier to accept what you have to go through and deal with it, then to fight it.

Here's  hoping my fifties are a little less educational. I'm thinking ( hoping) for a peaceful, quiet life. Palm trees and money in the bank would be nice too!

Till next time...xxx

ST

I AM ENOUGH

WOW this is my 200th post. Who would have believed it when I started writing my blog, that I would still be going strong with over 3000 followers, three years later. Thank you all so much!

While doing some research on the number 200, I found that in the bible the symbolic meaning of 200 is of "insufficiency". So it is quite ironic that at this milestone post a writing group prompt this week is  " I am enough". At the ripe old age of almost 50 what better time to discuss my sufficiency or insufficiency?

So, AM I ENOUGH?

When I look back over my 200 posts they are littered with examples of insufficiency - too sick, too old, too fat, not enough money, no time to relax, no time to catch up with people and so on. The list could go on and on. But what I've learned in my forties is that these phrases only serve to make you feel insufficient. It's almost like there is a raised bar you have to reach for everything, and each time you fail to reach it, the self esteem fairies assault you and remind you that you are lacking. You are not enough. Here are some examples:

No time to catch up with old friends? Shame on you!
Eating toasted sandwiches for dinner! Oh the horror!
Had a day in your pyjamas and watched Netflix? What a waste of time!

Yelled at the kids? Mrs so and so would never do that!
Don't have the latest gadget? Social oblivion for you!
5kg overweight? You are so lazy.

Get the picture?

I'm not sure why we do this to ourselves. Who on earth is keeping tabs anyway? Another thing I've learned is that people you think may be judging you are too busy judging themselves. It's like when you walk into a gym and hide at the back so that the toned gym junkies don't critique you. In reality they are too focused on their own perceived failings to really care what you look like, or how badly you do on the cross trainer.

My last ten years have been harrowing and anyone who follows my blog or knows me personally will not deny this. But I hope that despite all the events that I have written about in my 200 posts, that people see beyond  the scars, the illness, the fears and yes even the whinges. I hope they see a woman who has grown to accept her situation and has come to terms with it.

Turning 50 is a milestone.
Writing 200 blog posts is also a milestone.

The biggest milestone however is reaching a point in your life where you accept what life has dealt you and you make the best of it. This is totally reflected by my favourite quote which I've mentioned many times in my 200 posts: WHEN LIFE GIVES YOU LEMONS, MAKE LEMONADE. This quote reminds me that I don't need more of anything and I don't need to be more. I just need to carry on doing my best with what I have and realise that I am enough, just as I am.

Till next time...xxx
ST

DID I ASK FOR YOUR OPINION?

This week another of my prayers was answered. Finally after weeks of waiting, we found out that my younger daughter DOES NOT have Cowden's syndrome. My relief is intense. I am delighted for her. But to be honest I'm also delighted for me. With two of us in this family with CS, I did not know how I would cope with another. I would have had to of course, but I'm so glad to not be emotionally stretched any further.

The news is bittersweet of course. I look at my elder daughter's face and I can see amongst the joy for her sister, the unspoken question- why me? I recognise it because I've been there myself.  I was the only child out of four diagnosed. I was the only one branded. I catch her line of vision and send her a silent message. It's ok. I'm here too.

For me the week has been chaotic . But to explain, I need to go back to an ultrasound two weeks ago. I have found since losing weight that it is quite painful for me to sit for long periods of time. As usual I wondered if some lump could be causing problems. My GP sent me off for an ultrasound of my bottom, where somewhere between mortified and embarrassed, I lay on my stomach and pretended I was "elsewhere ". The radiographer quickly found two small lumps pressing on my tail bone and according to him probably causing the pain. Happy to have a reason for being mortified, I quickly dressed and told him that I would be making an appointment with my plastic surgeon to have them removed as soon as possible . And that's where trouble started.

He told me that he was very experienced and had worked around the world and that in his opinion there was no reason I needed a plastic surgeon for this. He believed it was a simple procedure and my GP could remove them. Now remember, this is the radiographer, not a doctor or even a nurse. He is supposed to take the pretty pictures not have opinions. Despite this, I immediately began to feel like a hypochondriac and started justifying why I needed the plastic surgeon, who knows my story inside out. He ( I believe) immediately realised he'd gone too far and said he didn't mean to make me feel bad, or words to that effect. Too late, mate.

Now what Mr Radiographer doesn't know is that once upon a time his colleague told me I had breast cancer. This was two years before cancer did actually strike for real. The damage the radiographer did that day was tremendous and both my husband and I never really recovered. We had to wait two whole weeks to find out she was wrong and yet she had seemed so knowledgeable and right.

Six years later yet another colleague told me that I had ovarian cancer. He even got in his boss to confirm. I was shattered and all alone that day. Two people confirmed this. It had to be true. I died a little inside as I rang my husband. Together we told my boss and headed to the city within days. You can see where this is going can't you? My ovaries were full of tumours but not malignant ones. The radiographer was wrong. His boss was wrong. I did not have ovarian cancer.

So I decided to ignore the radiographer and made an appointment to see the plastics man. He read the report and said "no problem" but he would need a hook wire inserted to guide him to the lumps. I would need a general anaesthetic for the actual removal. Take that Mr Radiographer. What GP was gonna do that?

Fast forward to hook wire procedure and imagine me once again embarrassed as three people this time, ultrasound my bottom. The only consolation was that my face was down and nobody could see it. The concern however was that nobody could see any lumps on screen. And without them revealing themselves, there could be no hook wire inserted. I was moved to the CT machine and within minutes the verdict was read. There were no stupid, bloody lumps (sorry for swearing)! The pain must be due to something else.

So the summary here is that a person who should not give medical advice, gave medical advice. He was wrong about the complexity of the procedure. He was wrong about the skill required to remove the lumps. Hell he was wrong about the lumps.

Radiographers beware. The next one that presumes to give me advice or an unsolicited opinion is

going to find out how to make a Maltese cross. And just in case you're reading this and don't get it, I'm from Malta.

Till next time...xxx
ST

FAT BUTTS AND OTHER STUFF

Today is pre hospital day. Tomorrow I'm having some lumps removed so that sitting down ( which I'm quite partial to), is not painful anymore. Who knew, that my once fat bottom actually served a purpose and protected me from feeling what was lurking underneath ? Anyway I'm one step ahead of this damn lump growing condition. They will be out this time tomorrow and I can resume sitting on my butt without discomfort.

Speaking of fat butts, yesterday I bought a pair of jeans. I stood in Kmart looking at them wondering

if I should or shouldn't buy them. My fat girl mentality was still there, in overdrive. As I already own jeans and don't have heaps of money, I decided to only buy them if  I could fit into a smaller size. Then I looked at the cost - $7!!!  This was ridiculously cheap and worth risking jeans not fitting. It was too cold to disrobe in Kmart so I took my jeans and myself home to " experiment". They fit. They are not the best quality but I don't care, because they are a positive sign in what has been a tumultuous journey, since my gastric sleeve operation last year. I may never wear them out of the house, but I might keep them forever as proof that all good things come to those who work for them, as I am doing.

My sister asked me recently if I felt "happier" now I could fit into smaller sizes. My answer shocked her because I said no, I never felt unhappy at the size I used to be. She was a tad disbelieving but it's pure truth. My happiness has never been linked to the size of clothes I could fit into. To be totally honest, my happiness was probably linked to what went into my mouth. I loved and still love food, but am developing a new relationship with food. It is taking time and patience.

There have been a few changes that have accompanied my weight loss that are worth sharing. Some of these annoy me more than make me happy, but what the hell, it is what it is.

1. People soon forget what you used to look like. I never will because I have photos of my old self up on the fridge door. I look at this photo regularly and realise that I haven't got to the stage of accepting the changes in my body and still think that this may all be temporary. You can't go from big to small without the brain taking time to catch up. It's really odd when you look at the photo and then at yourself in the mirror. Who am I? Where have I gone?
2. Shop assistants don't know the old you. They don't realise that when I buy something to wear, some of the old baggage is still around and therefore I need time to decide. This has more to do with limitations I've placed on myself over time. Who cares what your arms, legs look like really? I agree but if you've been covering up for a while, the confidence to not do so may take time. So, be patient with me. I haven't seen my arms and legs in years.
   
3. I used to take great comfort in shopping at one particular store called Taking Shape. I loved the colours, the style and the quality of the garments and 90% of what I bought came from there. I felt like an abandoned child when I realised I was now too little for these clothes. It was scary stuff having to venture into new stores. I once had an experience in Melbourne where a shop assistant looked me up and down and told me she had nothing in my size, before she even said hello. In fact she never did. After that rudeness, plus size stores became a safety and a one stop shop. There are some stores I haven't been into in years, for fear of being ridiculed again. The fact that I can now fit into their clothes and probably won't have to suffer that again, is a hard fact to swallow and is going to take time to get used to.
4. Plane flights are different. No more trolleys bumping into you. No more looks of disgust when you ask for a belt extender. AND no more worries that you will be the subject of an Internet story, because you've taken up your seating partner's space. You will also realise how totally yucky plane food is, because your taste buds are all different and no longer into twenty variations of preservatives. ( Read this for more: https://medium.com/@thefatshadow/what-it-s-like-to-be-that-fat-person-sitting-next-to-you-on-the-plane-85006e263778#.evrf6fim0)
5. Shoes. Say no more. Now this does make me happy. One to one and a half shoe sizes smaller opens up a new world. This was an unexpected pleasure due to loss of fluid in extremities, but also sad when you realise what you've missed out on!
   
6. Dining out becomes more about the people whose company you're enjoying than the food. With a sleeve what you can eat is minuscule and cafes don't do that size! It takes a bit of getting used to, but you do learn to share, take doggy bags and order entrees and eat half. It's a totally different mindset and habit and people need to be patient with you.
7. I think I've mentioned this before. People who used to casually allude to your weight will move  on to criticising something else. To some people you will never be perfect and that's ok because the only opinion of yourself that matters is the one you hold. The world is full of judgemental people so cultivate a sense of deafness.

There are lots of other points which I guess I'll write about with time. But I suppose my message here is that every person is on a journey which we may never fully understand. Therefore we need to back down and shut up and not assume what is best for other people. We need to watch our body language,  our tone of voice and not  " fat or skinny shame" via social media or in person. Live and let live.

I'm learning how to be comfortable in my new body. It's taking time. Now go away and let me try my jeans on again, just in case it was all a dream.

 

Till next time ...xxx

ST