THE HUSBAND

Years ago a good friend introduced my family to the concept of the birthday festival. It's simple really. Instead of celebrating for one day you celebrate for an indefinite period of time.  A week is common but for special birthdays ( eg 40), a month is acceptable.

The husband began his birthday festival three days ago. He chose a local food hall for lunch and so the FED ( favourite eldest daughter) and I accompanied him with our lips zipped. You see a rule of the festival is that the festival owner gets to choose everything and you have to comply. The FED and I rolled our eyes at each other. Not in a million years would we choose a food hall in a shopping mall for a festival lunch. We'd rather not celebrate... or starve.

I made a number of suggestions in the lead up to the festival. Those who read my blog regularly may remember our late booking at a local hotel for our wedding anniversary. Did he want to go there again? He did. Who is this man and what have you done with my husband??? Actually I don't want to know. Three day booking at hotel overlooking ocean made. That's more like it!

Now there is an expectation that if you are having a weekend away with your wife, you actually spend it with her. So why of all weekends is he OFF AT BUNNINGS AND MASTERS with the FYD ( favourite youngest daughter)?  To those non Australian readers these are hardware stores...man's world! GRUMBLE GRUMBLE. He is all love, closeness and romance isn't he and I can't say anything cos it would break the festival rules.

Never mind he's back now. Maybe lunch and a drink in the bar? Wrong again. The birthday boy has decided he needs a sleep. So here I am in the bar with a drink, bar snacks and attitude typing away my annoyance. He is so frustrating! So much for a walk on the beach and lunch out in the sunshine.

The husband and I met many moons ago. I was 22 and he was 28. We have been together 26 years. It took three years for us to marry, even though he now says he knew he was going to marry me the moment he met me. I'm sure he says nice things like that every so often to get his own way with me...and it 
works. Which is why festivals aside he is snoring peacefully in a giant bed and I 
am letting him do so. He totally gets his own way not during festivals but always.

Now the husband professes to not read my blog. So he probably won't read this.

My husband is the most frustrating man on earth. He is impossible to organize anything for or with. He makes me so angry. But... he's MY frustrating, MY impossible, MY pain in the neck. He's also the most loving, gentle, caring man I've ever met. He would give you the shirt off his back and the last coin in his pocket. He has looked after the girls and me so well in the last few years. He has been there through countless surgeries, numerous doctors appointments and every single crisis. I don't know how I would manage without him by my side.

And this is why festival or not he gets away with murder. He always has and always will.

Happy birthday sweetheart. Love you more and more, but next time I'm checking into this lovely hotel alone. You can go to Bunnings!

Till next time...xxx

DESPERATELY SEEKING HEATHER

My body is playing games. It's reminding me ever so subtly that it's around and needs care. It's doing

so in a very frustrating and embarrassing way. Introducing the "almost faint".

Yes I've taken to having "almost faints" or mini blackouts. These used to happen when I was a teenager (much to my parents horror), except back then I actually fainted.

" Mum, I'm going to faint"

" Oh for goodness sake. There's nothing wrong with you. Don't think about it"

Me - clonk...once holding two litres of orange juice...that showed her!!!

Another time and another faint my doctor father decided I must be low in calcium. My mother literally chained me to the bed and made me every cheese dish she could think of. It was the best two days ever!

I'm not overly happy with the current situation. So far I've had a number of shop attendants attempt to catch me. One told me she was studying cardiovascular medicine and I needed my heart checked. I almost threw my coffee at her. "Don't jinx me woman!"

After an unsuccessful shopping trip today where the younger daughter had to drive me home, after I almost fainted on a little Asian man, I decided the time had come to visit a doctor.

Now if you know me you will know that I resist visiting new doctors if I can help it. My medical history is just too extensive and I just can't be bothered going through the nonsense with anyone new. My GP, Dr Heather is one of my favourite people not only because she knows all my history but because she puts up with me. But she is steadfastly refusing to move to the city with me, so grumble, grumble, grumble...let's go doctor shopping once more. Can't keep "almost fainting" on people can I ? ( sigh)

I'm really hard on my doctors. I size them up and judge them in a couple of seconds and find it hard to change my mind once I've pre judged them. Terrible...I know, but that's how it is when you have a crappy body. You don't tolerate fools and I've met a few in my time.

First impressions were not good. If I'm first on the evening list at 6 pm I tend to get a bit irritated if the doctor doesn't arrive till 6.30pm. Honest to goodness woman. You only work two shifts a week.

Second impression- dressed smartly and looked me in the eye when she smiled. Forgiven for lateness but mentally noted that no apology given. Let's move on...

(Essence of dialogue sprinkled with some poetic license).

What can I do for you?

I'm getting fainting spells.

Why are you getting fainting spells?

You tell me...you're the doctor.

Your ears are fine, your heart is fine.

Haha cardiovascular medical student, HEARD THAT?

Are you basically healthy?

No

Could you be bleeding?

Internally...maybe.

Why do you say that?

( groan)

I have Cowdens syndrome.

Cow what?

Cowdens. It's a pten syndrome.

What's pten?

Can I charge YOU a fee if I tell you?

I've never heard of it.

Most haven't...I promise I haven't made it up.

I'll have to look it up.

Knock yourself out.

SO with this pten what makes you think you could be bleeding?

BECAUSE I have a lot of hamartomas in my bowel. This is common in Cowdens.

(At this stage I'm almost certain she had no idea what a hamartoma was but I'll give her the benefit of the doubt, even though she was starting to bore me).

So, could it be your periods?

I have no uterus.

Could it be your thyroid?

I have no thyroid.

Maybe it's sugars.

Maybe it is.

Let's do some blood tests. Maybe another doctor can give you the results because I'm not in for another week.

When no doubt you'll be late again.

Thank you for coming.

Pleasure all mine.

Grumble, grumble, grumble. Head to reception desk holding wall to avoid "almost faint".

Doctor has charged you for a double appointment.

Of course she has.

Till next time...xxx

PROGRESS REPORT

One week down and she's still on the ward. She's looking well but dying to get out of there. Unfortunately at the moment ( according to her), Dr HS is being a real meanie and keeping her locked up . Well not quite. 

"Till your levels settle" is the official answer. 
" Not happy Tim " she says. 

Her excellent rapport with her doctor reminds me of how important the doctor/ patient relationship is. Doctors who make time to have a chat and a laugh with their patients treat them with the respect they deserve. But beware the quick witted patient!

Dr: what are you doing?
FED: uni assignment.                    

Dr: that's a very geeky thing to do.
FED: that's rich from a neurologist.

Oh dear!

The ward as usual is a hive of activity. Interesting characters come and go. A nearby patient is asked if he takes drugs. His reply - " just a bit of marijuana on the weekends and I've tried ice but otherwise no". At 4am he escapes from the unit for a cigarette ( another drug he doesn't take). The nursing staff are not impressed.

Up in the cafeteria I meet a woman treading a similar path to mine, except in her case it's her husband not her daughter. We share stories and it feels good to talk to someone who gets it. Family and friends try their best but only someone wearing the same shoes gets it.

The husband returns to our home town to fit in three days of work before returning on the weekend. Anxiety builds in me when he leaves. Once upon a time I would have rubbed my hands in glee. Now I become an anxious, breathless mess at the thought of coping alone. This is yet another side effect of a body which has been pushed to extremes physically, mentally and emotionally. To make matters worse the vertigo is back. Not as bad as before but floors are definitely moving. 

My youngest daughter is missing in action. She has been consumed by her acting course and life in general. I hope the acting monster spits her out occasionally so I can have a hug and she can clean her room.

It's late.
I'm tired.
I'm also sad.

Although I am a strong person there are days when enough is enough. Today is one such day. I don't want life to be all about medical drama. I don't want this to be our " normal". Yet however much I hope and pray it's all we seem to get.

Tomorrow might be different.

Good night xxx...

THE WEEK THAT WAS !!!

Ok folks let's start off with some gratitude. At this stage of the week (10pm Sunday night) I am grateful for:

• Ambulance service who responded to my daughter quickly.
  
• My FYD who was so brave when she rang for the ambulance. If you've never done this before you won't know what I mean.
• The makers of our Toyota Camry because that car flew up to our home town and back down in the morning when our girl took ill...and didn't miss a beat!
• The staff from the neuro unit, which treat the FED with such love and care it is touching. Best staff ever.
• Dr Phillips and Dr Chiu. No nicknames...respect and my never ending gratitude. Best doctors ever ( unless of course one of my doctors is reading this in which case I mean you too).
• The High Dependency Unit nurses - no we are NOT bringing any more Eagles in for you. Sorry to disappoint!
• My Mum for cooking us meals during this terribly draining week. Your roast beef was nom nom nom.
• The husband for going out to buy celebration food so we could celebrate when Dr Phillips rang. Picture pizza, red wine, BBQ chips and chocolate. It hadn't been done in ages and it seemed like a good idea at the time.
• My friend who reunited me with my phone. Separation has been hard but life's great now.
• The Eagles for kicking Melbourne's ass! 
• Family,friends, associates and perfect strangers for your messages of support. I can't answer you all but I've read every one and some over and over.

Thumbs down to:

• The stent that blocked up. Stop causing problems.
• Parking costs at hospitals. Why oh why is there not a better way?
• Bills from public hospitals which only come in because you say you're a private patient. Surely if you're good enough to use your private health cover to benefit the hospital, they can work out a better way to deal with the masses of paperwork. Grrr
• Having to work out how to pass the time when your child is in theatre. Rip my heart out because 9 hour procedures are doing my head in!
• Being asked if this is the last surgery. Sorry my crystal ball is out for a service. 
• Needing to have a bloody medical degree to cope with my life properly. Between me and my daughter ...!!!
• Being Paleo for a month and then reverting back to old ways in times of stress. I have no will power whatsoever.
• Telstra for clearing everything off my phone and for making me download everything again. You may have fixed it on warranty but I paid you anyway.
• Sports commentators for micro analysing the Eagles chance of making finals. Who cares? Just play and enjoy.

Have a good week. Hoping she gets discharged soon!!!

Till next time...xxx

LUCKY NUMBER 13?

The number 13 has various meanings and associations depending on what culture you are referring to. I have always known it as lucky number 13. Tomorrow my favourite eldest daughter (FED) will have surgery 13 on her brain. She had number 12 yesterday and number 13 is scheduled for

tomorrow.

But let's backtrack a little.

The husband and I arrived in the city and headed straight to the hospital, where both girls had arrived by ambulance. Before we arrived, the ED doctor  had performed an MRI which surprisingly looked good, maybe even better than last time. 

Luckily the consultant wasn't as convinced. The FED looked anything but good. Something was wrong. He said the only way he would know for sure was to go back into the brain and do more work.

Maybe she has a tummy bug?

Maybe the stent in her brain is blocked? 

Maybe the fistula has re grown? 

Each suggestion seemed worse than the previous one.

Usually my daughter is placid and cheery. Today she was anything but. She was furious and I don't blame her. You see today was her special day with the I AM PROJECT. Today she was having a photo shoot and getting hair, makeup and photos done. Nowhere in the planning was hospital mentioned. NOT FAIR.

The rant continued. University was going well. She had assignments due and people she would let down if she didn't attend. WHY WAS THIS HAPPENING?

Sometimes as a parent you don't have the answers. This was one of those times. I let her be but I could tell that this was the final straw. Not even the sight of her favourite doctor cheered her up. NOW I WAS WORRIED.

Surgery number 12 began.

There was a blockage but she had come to the ED quickly so it was able to be fixed.

More work which had been planned for September was done there and then. May as well get some advantage of the general anaesthetic!

And meanwhile we waited.

Nine hours later the news was good. We even got to speak to our drowsy girl. The downside - back in to finish off in two days. Oh no! Health must come first but she has tickets to a football match she desperately wants to go to. I think I'll hide when he tells her that she can't go. Yet another disappointment. NOT FAIR.

A more resigned daughter greets us today. She is flat on her back and can't 
move till the next surgery. I don't know how she does it. She knows about the football but doesn't say much. My heart breaks. She is being sensible. She shouldn't have to be so sensible all the time. 

Till next time...xxx

SWEET AND SOUR

The husband and I thought we would go and visit the FED ( favourite eldest daughter) and the FYD ( favourite youngest daughter) in the big city. They in turn seemed pleased with the idea and even attempted to clean the unit to a state that would please both parents. Much to the husband's delight (he is a cleanaholic) they didn't do a great job and this gave him lots to whinge about and fix up while visiting his two children.

Every visit starts off with readjusting back to four. This is especially true in the car when two adult size women occupy the back seat as they did when children. There is much grunting and moaning but in truth both are pleased because this is one load of petrol they don't have to pay for. The husband starts the car and roars the same thing to them he has done for almost twenty years, " Quiet in the back seat". Where once this used to elicit giggles now it gets " Dad can you just drive!". Great start.

The readjusting continues in our conversation, but eventually some sort of truce is subconsciously reached between children and parents. My version goes like this:

We love you both more than words could explain but rest easy we're not moving in and neither for that matter are you moving back home. Yes we are here to check up on you and remind you what behaviours are socially acceptable and which ones will lead you to places you never knew existed. Yes we will clean your kitchen, water your plants, hang out washing, fix your car and take you out for dinner. Yes you will love us and you will hate us and both emotions are ok. It means we're doing our job. We will speak our mind and you will listen or read about it on Facebook, Instagram, Twitter, blogger, SMS and anything else I think about. And if we forget to say something, prepare to be skyped or face timed later...you taught us, now face the consequences. Tough love...yeah baby! But we DO love you.

With that settled the weekend proceeded without a hitch. We even managed a pleasant afternoon tea with extended family and a lovely night watching the FYD strut her stuff with her acting mates. It was an interesting night because I was prepared to be bored and was anything but. I wasn't sure than a performance without speech was my cup of tea BUT I was mesmerised. It was fantastic! 

The FYD complains that I never write about her. How she knows that, when she also professes never to read my blog is strange. However, I will test the waters here by saying :

My dear daughter (my favourite youngest daughter in fact), I don't think you know how talented you are. Everytime I see you perform be it dancing, singing and now acting I am filled with such pride.

  I thought I would get that in before watching the Shakespeare act she is dreading performing. She and Will are not really the best of mates at the moment and there is a tussle of "wills" going on. Will let you know who wins. I've got my money on ...

And then it happens. 

The FED wakes up with a headache. The word headache in this family is a curse word. It means something is wrong and someone's brain is playing up. Surely not? It's been a good five weeks since surgery and she's been so well. "Let's try some Panadol and see how we go...everyone gets a headache sometime".

She seems better and waves us on our way. It's a five hour trip and I hesitate as we leave. My mummy radar is on full beam. Something is wrong and I can feel it. But she is twenty and I don't want to be over protective. I want her to call the shots. So we leave. But I'm not happy and I can't settle.

In the five hours it takes to get home she gets worse. Come morning her sister calls an ambulance and heads off to hospital with her. Not yet recovered from a long trip plus a sleepless night, we have no option but to get into the car and to retrace our route back to the city.

 It's a quiet trip except for two pounding hearts.

Till next time...xxx

FOR GOODNESS SAKE - RELAX!!!

The other day an old friend gave me a gift . She gave me a voucher for an hour long aromatherapy massage. I was so touched by her kindness and thoughtfulness but for a few days seemed to hesitate about ringing up to make a booking.

You see I don't know how to relax and anything involving my battle ravaged, scar filled body makes me nervous. So for a few days I came up with every excuse under the sun.

• They'll hurt me.

• I'll have to explain about the cyst looking things on my body. (hamartomas - characteristic of Cowdens).

• I might cry from the sheer joy/pain

• I'll have to expose my breast reconstructions to someone other than a medical person or the husband.

• I"ll react to the oils ( super sensitive skin).

• Body image issues...

"Oh my goodness it's a massage, not an operation! Some people have these regularly. Why can't you just prepare to have fun and relax?"

Appointment made.

So yesterday was the day and off I went. The outside of the building looked like a Balinese haven and at the door was a pile of shoes. This stumped me. There was obviously some etiquette here I didn't know. Hmm what to do?

Why don't you know these things? Why haven't you been here before? 

I chose to keep my shoes on and entered to a quiet greeting from the receptionist. She quickly seated me and got rid of my shoes. Now I know. She also got me a drink of water, some oils to choose from and paperwork to fill in.

Paperwork. Just like at the doctors. Now I'm on familiar territory.

Or so I thought. What unusual questions...not what I was expecting. Eg am I claustrophobic? Memories of countless MRI procedures came to mind and one in particular, my breast MRI. Am I claustrophobic after that - hell yes! Tick.

Another question was about the level of pressure to be used in the massage. This had been one of my worries but in reality it's a bit like levels of spiciness in a curry. My idea of mild and someone else's could vary considerably. I ticked yes and hoped for the best.

Which areas don't you want massaged?
Legs - no - veins...sore
Bottom - eww no. Are you for real? Why would you want to massage my bottom?
Tummy - not showing that bit either.
Running out of parts? Ok to head, shoulders, neck, back, feet...all good.

The massage therapist was young and professional. She may have sensed my nervousness because she went through my paperwork and reassured me about all my worries. I then had to disrobe, a procedure often associated with going to theatre.

Stop thinking about surgery woman! Relax, relax, relax

Initially I spent every second anticipating pain. Then suddenly the music and the therapist began to work their magic. She found every knot, every tight spot, every sore bit. I didn't want it to stop ...except on my lower back where she later told me that even with very light pressure, my pain was obvious.

After the procedure I was led into another room and given a cup of raspberry tea and a chocolate. Pure indulgence. We had a chat about some of her concerns and I was taken aback by how intuitive this young woman was.

Now many of you might be thinking "why on earth is she writing about getting a massage". Well it's because such a simple act is so good for the soul and the stress. I once promised myself I would do these things on a regular basis and I did for a while...then I stopped. Life got in the way and I forgot that the reasons I once promised myself some quality " me" time  were important ones and ones which still exist today. The scientific world is still unsure about links between stress and cancer but more sure about how stress can encourage habits such as drug taking, drinking and over eating. These bad behaviours may lead to cancer so indirectly there is a linkage between stress and cancer, enough anyway to make us sit up and take notice.

But do we take notice?

It's obvious from my massage that I have got used to operating under stress all the time. This is not good folks! It's like harbouring a time bomb. It has to stop. It's bad enough the genetic condition I carry is like a time bomb in itself. I don't need to amplify my risk.

Today I thought I would have some more pampering and I took myself off for a pedicure. On arrival the therapist told me she had also booked me in for a complimentary foot massage. Bliss!

Somebody is trying to tell me something!

Till next time...xxx

WANTED: ideas on how people de- stress. Leave them in the comments below.