Au Revoir

February 12, 2013 § 10 Comments

Sus - Before I was Ill

I havent written anything in this blog for ages. It hasn’t been because I haven’t thought about writing posts, I have. It just seems to evade me to actually write them down.

I was wondering about this and asking myself, why haven’t I been able to tell you about some of my latest health issues. Like the fact that I had some bloods done lately that found an auto antibody called PMscl which basically means  I now seem to have an overlap disease, schelraderma. And this (and I need to confirm this once I have my next consultancy appointment) means I have a rare form of dermatomyositis called schleradermatomyositis (say that while eating an apple!). It’s so rare there isn’t even an article about it in Wikipedia.

So why haven’t I written more blog posts of late?

I think it is because I am starting to feel better (with, or without, the schleraderma).

I am back at work full time (although often that really takes it out of me and I get exhausted).

I feel a lot stronger in myself.

I am managing to do  4 minutes on the cross trainer, twice, most days.

I can walk much further.

I am even going to my first business meeting next week: It’s been at least 10 months since I was able to, not only travel to a meeting, but actually have the strength and stamina to sit though one. It’s in london at Imperial College and its also signficant as it’s the end of a 2 year project I’ve been involved in that I’ve somehow managed, through the illness, to stay afloat with.

Myself and Suz started this blog to help us cope with a shocking and difficult reality, of being very sick. This blog and the people who read it and had conversations with me about the trials and tribulations I wrote about, has helped me to get through what has been, probably, the most difficult year of my life, both emotionally and physically.

I know I’m not completely better and it’s an incurable disease anyway, so will rear its very ugly head from time to time, but for now, I am moving forward. Dermatomyostis may be clinging onto my shirt tails and causing some drag, but I’ll wear some skates and pull it along with me, I will no longer let it control me, I want to live.

So my blogosphere friends, I say, for now, au revoir and thank you for being there with me: I wish you all, health, love, happiness and peace.

Sus xxx

New Beginnings

February 12, 2013 § 2 Comments

549495_10151013240261024_1824506590_n2013 is the year for new beginnings.  It is the year for fresh challenges, new energies and a future that is about looking forward to better things.  Notwithstanding how tough 2012 was, I guess I feel like I have learnt a lot – about myself as much as anything else.  And in that respect I feel grateful and indeed proud to know that even as I get older there is more to learn.  After all, life is a journey and it would be terribly boring if the landscape was dull and the road predictable. When things are  easy the temptation is always to be  complacent and expectant – that things will just be OK.  And in the end OK is enough –  by default it is the standard.    In my view OK is simply not good enough  – and for that I am grateful that my life has been nothing short of extraordinary – tough lots of times but worth it all the same.

So in  writing this note I want to reflect on what I have learnt in what is easily the toughest year of my life.

The trials and tribulations of 2012 have taught me:

  • Never doubt your own strength. You will be as strong as you need to be  – strength draws its reserves from unknown places.
  • We will get through even the darkest moments and at some time, when we are ready, we are amazed and proud of our resilience.
  • Resilience is what we admire in other people even though we take it for granted in ourself.  It is by far one of the most under-rated capabilities we have. We need to recognise it as a gift and draw on it when nothing else is left.
  • Family and friends are forever. They are everything.
  • People who are false, eventually just disappear out of your life – they can’t match your honestly.
  • Our mind is a  wonderful and powerful thing.  I choose to see the glass half full. I choose to be well and positive. I choose to make my own future.  I choose my destiny and am not defined by my failures.
  • I can let go –  lose nothing and gain strength.
  • Some people will always be victims and I am not one of them.
  • When your hair falls out so does some of your confidence.  When it grows back, it takes much longer for the confidence to reemerge.
  • Some doctors you trust with your life  – others you leave for others to trust.
  • The world goes on even when I don’t work at a million miles and hour.
  • Everything I experience is in the perspective of my life’s journey.  It is a mosaic of my complexities, of light and shade, of colors and riches, of cracks and chips – but it is what it is and it is worth the effort of holding it together.

There you have somethings that I got out of last year.  On the practical side – nausea passes, hair grows back, your appetite returns, your mouth eventually stops hurting,the flavour of food returns, life goes on – and on.

So now the final update

  • Katherine got through year 12 with an excellent score and is off to Sydney University in a couple of weeks to study Diagnostic Radiography. I will be on my own at home and that is a challenge I am surprisingly happy to face at the moment.
  • My cancer has gone into remission  – for how long is any one’s guess but the hope is it is for a few years – maybe forever, but Im not really thinking about that
  • I am working again.  I have set up another business but am also contemplating full time employment – maybe even a sea change.  I am open to all possibilities this year
  • I have written down a secret list of what I want to get out of this year – I would share it with you all but then it wouldn’t be a secret and I have learned that sometimes you just have to wait and see.

So life is busy and full again – but not too full for me to reflect on how important it is to make time for yourself and to never take things for granted.

Writing this blog with Sus has been a lifeline – it was just the writing that mattered. Not that anyone was listening.  It is amazing just how therapeutic it is just to hear yourself articulate your thoughts – in words and in print.  never under estimate the power of conversation.  And that is where it all started – the desire to start a conversation.  And for now there is not much else to say  – except thank you, from the bottom of my heart, to everyone that joined in.

All my love and I wish you all a happy and fulfilling life.  I know that mine is.

Suz xxxxxxxx

Our Nominations for the Liebster award

January 14, 2013 § 2 Comments

The Liebster Award

As part of the Liebster Award, nominees are required to make nominations for the blogs they feel should be recognized. There are so many great blogs to choose from so……where do I begin? There are some bloggers that work diligently to make people think and reflect; I believe that is what bloggers are supposed to do. First, a little information about the award and some formalities.

About the Liebster Award

“The Liebster Award is given to up and coming bloggers who have less than 200 followers.  The word ” Liebster” comes from German and can mean the sweetest, kindest, nicest, dearest, most beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome.”

Rules

  • Thank the person who nominated you.  Thank you   Artofstumbling
  • When you receive the award, you post 11 random facts about yourself and answer the 11 questions asked by the person who nominated you.
  • Pass the award onto 11 other blogs (while making sure you notify the blogger that you nominated them!)
  • You write up 11 NEW questions directed towards YOUR nominees.
  • You are not allowed to nominate the blog who nominated your own blog!

The following is a combined response from Suz and Sus:

Eleven random facts about us.

  1. I used to hate my curly hair but now I quite like it / I am a science addict
  2. I am a workaholic and ashamed of it / I was an amateur astronomer as a child and wanted to be taken away by aliens
  3. I used to be a competitive athlete when I was in my late teens / I am a pantheist
  4. I had a dog once that I called after a Charles Dickens character: Mr Micawber / I am an advocate of animal rights and believe all things in the universe are equal (ALL things)
  5. I have never had a broken bone – although have had some cracked ribs as a result of a bike accident / I was a vegetarian for 30 years until I got dermatomyositis and now I eat fish for the protein but im going back to being a vegetarian as soon as im well again as I HATE eating animals – it feels wrong
  6. I feel that I am getting old and I don’t like it
  7. I went to a catholic secondary college when I was a kid
  8. I am just about the only one of my school friends that has moved away from the state I was born in
  9. I feel frustrated with my own abilities  – enough is never good enough
  10. I am a half glass full person – most of the time
  11. I love burning candles around my house

Our answers to the questions posed to us 

1. What’s your favourite book?

  • JD Salinger. Catcher in the Rye
  •  Hitchhikers Guide to the Galaxy

2. Your favourite film?

  • The Best Exotic Marigold Hotel
  • Contact

3. Do you have any nicknames?

  • Suzzie
  • Boob

4. Do you play any musical instruments?

  • No – but I did start to learn the piano once in my 20s
  • No – Ive tried many and failed dismally

5. Have you ever had surgery?

  • Yes – had some cancerous stuff extracted
  • Yes – an arthoscopy on my knee

6. What’s your favourite food?

  •  Smoked Salmon  – with capers on fresh bread and with cream cheese !!!!!!
  • I don’t have one

7. What are you afraid of?

  • Heights, snakes, sharks – anything scary
  • Spiders and foolish humans

8. What’s your proudest moment?

  • Giving birth to my daughter – no question about it

9. Your favourite item of clothing?

  • A beautiful cream dress that makes me feel like Audrey Hepburn

10. Your favourite song?

  • Moon River

11. Favorite TV Show?

  • Spooks

Our Nominations:

http://jillinoisrn.com

http://highinbrixham.wordpress.com

http://franksdermatomyositisjournal.blogspot.co.uk/

http://superherounderpants.com/

http://nikilee766.wordpress.com/

http://rescuerover.wordpress.com/

http://myitchybubble.wordpress.com/

Our Questions

  1. What was the name of your first pet?
  2. What was the first album/CD you ever purchased?
  3. Would you rather eat out or have a home cooked meal at home?
  4. What’s your favorite flower?
  5. What house chore do you absolutely loathe doing?
  6. What is your favorite country to visit?
  7. What flavor ice-cream do you like the most?
  8. What is your idea of being decadent?
  9. Who is the person you admire most in your life?
  10. If you could choose a different job or career what would it be?
  11. What style of music do you like the most??

Happy Christmas or whatever it is you celebrate !!!

December 23, 2012 § 3 Comments

 

 

 

 

 

To all our family, friends and readers

I hope you have the most wonderful of celebrations – whatever it is that you celebrate at this time of year.  No matter what has gone before, Christmas holds the magnificent opportunity for peace and love.  Since I can remember it has been a special time in the life of my family.  I hope ti is for yours as well.

Merry Christmas and thank you for all your wonderful support.

Love Suz x

2012-12-23 12.38.21

The End of Chemo – Here’s Hoping

November 7, 2012 § 2 Comments

 

Well this week was chemo number six and I hope it was the last one.  It has been a tough couple of weeks and I have to say that this week I have felt totally depleted – I think the expression I used to some friends was feeling like a truck had literally hit me.  While I wanted to be excited about getting through the chemo I didn’t really have the energy  – maybe in a couple of weeks when by body starts to get over some of the drugs.  I have a PET scan scheduled for the first week of December which I am hoping will be positive.  I think it will be – I feel pretty positive in myself that the outcome will be OK, though sometimes I dare not get to confident, just in case.  Over the next month I still need to have a two doses of the Rituximab but am told that it doesn’t have the same side effects as the deadly chemo drugs.

At this stage my skin is a bit splotchy, I still have the metallic taste, feel exceptionally tired and while my mouth is not too bad at the moment recent experience is that is gets bad the second week after chemo.  So that’s what I am anticipating for next week.

I still know there is a way to go – and thinking about having to get back on my feet and finding a job is pretty daunting at present.  That is probably what worries me the most.  But I have a goal – to meet Sus in Rome around September next year when we are both feeling well and able to reflect on what a big year 2012 has been and how we faced the challenges, the demons and beat them all.  It is more than something just to look forward to – it will be a significant milestone for us both and we are both determined to get well so we can celebrate our respective achievements.  I have no doubt we will have a marvellous time and lots and lots of laughs – that in itself is worth work towards.

For the moment let’s just see what the next week brings.

 

Friends . . . .

October 17, 2012 § 4 Comments

One of the things that I am humbled and privileged by is the generosity and kindness of my friends.  I feel like I have to put this in big print and bold it.  Together with my wonderful family (here where I live in Canberra and all the rest in Melbourne) my friends have provided the most amazing support and understanding throughout this whole cancer experience.  So much so that I sometimes feel a bit guilty that I am managing the treatment so well and feel so positive   – or maybe it is just that I am so positive because of them all.  I suspect it is actually the latter. 

People talk about how experiences like this encourage you to see your life differently – have different priorities.  That might be the case but to be honest, the thing that has struck me most is just how much I have valued the relationships I have and that without them this process would have been a whole lot tougher – not just more lonely but more frightening, more anxious and even more challenging.  Friends have this way of making you feel like you have the ability to do things you don’t even think you can do yourself.  Their generosity of spirit, kindness and unqualified understanding has helped me retain my confidence when, if left to me, I would have hit rock bottom.  While they may never appreciate the impact they have had, there is no doubt in my mind that what I will walk away with from this experience, is a very deep and humble appreciation that without friends and family not much is possible at all. 

 

As Bald as an Ostrich . . . is that what they say ????

October 8, 2012 § 7 Comments

I’ve decided that I should liberate myself and show off to my friends (anyone who reads this post)  my bald head !!!!  I was thinking the other day that I really should take a photo of it just to remember what I look like with no hair.  So here it is – even though I have now been bald for several weeks it has taken me this long to come to terms with it and ‘share’ my new appearance.  I’m not up to walking the shops like this – but at least I feel comfortable enough to take the chemo hats off around the house (sometimes).

  Funny how hair takes attention away from the wrinkles and imperfections – no hiding them now !!!

Chemo number four tomorrow.  I think it is true what they say that the more you have the harder it is.  I seem to be increasingly tired and have very little interest in anything much.  I can get out of bed but beyond that I don’t really feel much like doing anything.  I can also smell the chemo more and more – and see the affects on my body – non of which I like.  At the moment it is hard to imagine what having energy is like but I guess it will all come back – eventually.  In the meantime I’ll just grin bear it – and look forward to the day when my life gets back on track.

 

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