Two significant milestones in one incredible week!

Wow!  What a week!  Two milestones in one!

On Saturday 31-05-14 I married the lovely Raymond Sunkel.  What a perfect day we had!  It was a very happy celebration with our closest friends and family and we were blessed with a perfect winter’s day……clear blue sky with not a cloud to be seen.

I am loving being a wife and feel so lucky to have a truly wonderful husband. 

Our lead up to the wedding wasn’t quite as we had expected.  After the round of chemo that I had recently, we felt sure it would be enough to see us through to our wedding day.  However, once again my blast counts took off and it was advised that if I wanted to make it to the wedding date a week later that I best get into hospital straight away for another round of chemo. 

We were gutted.  We were angry and disappointed at the thought of possibly having to postpone the wedding.  Heart broken.  After an afternoon of being upset and seeking counsel from a friend, we managed to pick ourselves up again and made the decision to stick with our date faithfully expecting that I would recover in time and be healthy enough to enjoy the day.  We felt sure of this date and felt like it had been given to us to celebrate our love.  There was no way we were going to postpone.  The 31^st of May was ours.

The timing would mean that I would not have an immune system at our wedding but it was a risk we were willing to take.  I’m glad we did.  While some of those around me fell ill with colds and flus I somehow managed to make it through unscathed.  I was able to enjoy the day and evening and celebrate with plenty of energy.

It was a spectacular day and we were showered with tonnes of love and were able to express our love for each other and those closest to us.

A few days following our wedding I celebrated my 30^th birthday.  My previous specialist did not believe I would make it to this day.  I am ecstatic to have made it this far.  This time last year I celebrated my 29^th birthday wondering whether I would make it to the next.  I now look forward to my 31^st.

Raymond and my friend Paula got together to conspire to throw me a surprise dinner, which unfortunately had to be cancelled due to me feeling terrible and spiking temperatures (thanks to the leukaemia).  They ended up bringing the party to me though and we had a fantastic evening with our families and friends.

I felt thoroughly spoilt and was made to feel special and very much loved.  I stood back and watched everybody who was there feeling amazed by the incredible people in my life.

So what now?  Plans for a honeymoon have been put on hold for another round of chemotherapy starting this Saturday.  This isn’t too much of a surprise.  The last round of chemo was administered at a dose simply to get me safely through to the wedding.  This next lot of treatment is going to be more intensive and is a combination of three types of chemotherapy that we haven’t tried before.  We are hoping it will help to knock the leukaemia back and keep it stable long enough to possibly head over to America to check out some treatment options not currently offered in NZ. 

I expect to be in hospital for up to a month.  I have tomorrow to pack my bags and put together enough things to keep me entertained during my stay.  On my last evening I intend to squeeze in a romantic date with my gorgeous new husband J

Days before the wedding.  Having my final dose of chemo while finishing making the last of our confetti cones

A sneak peek of our wedding from the photographers

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Attitude of Specialists

Through the contact I have had with different specialists and doctors in the four years I have been battling leukaemia, I have noticed the way their attitude and mood affects me.  I wonder how much consideration they give to the impact that it can have on their patients?

I don’t expect my specialist to not be honest and forthright about the gravity of my situation.  I don’t expect them to wrap things in cotton wool or to give me false hope.  I’m not wanting my blood test results to be sung to me but a smile and a little positivity could go a long way.

During my last stay in hospital, I noticed a difference between the attitude of two doctors that came to visit me in my room and the way it either boosted or deflated me.

Doctor one discussed my results and progress in a serious and sombre way.  He came across as a bit grumpy and a bit too busy.  His manner made me feel discouraged from asking questions.  He managed a smile on the way out but after he left I was feeling really down and in despair.

Doctor two didn’t have any different news to tell me but he smiled and he was playful.  He celebrated the good things in my test results.  He gave me a hug.  When he left, my situation was no different and I understood this but I felt happy and could easily maintain my positive attitude.  

It made me wonder, is there any importance placed on the doctor’s bedside manner during and post training?  Is the subject ever featured at conferences they attend? 

Doctor two was at an earlier stage in his career than doctor one.  This also led me to wonder, do all doctors start off with an awareness of how they can impact a patient’s morale?  Is it something that loses significance further into their career?  Did doctor one start off with a vision or intention of affecting a patient’s morale positively?  Has he simply lost this intention due to the stresses and busyness of his job?  Has he seen too much, or become a little cynical or pessimistic along the way?

Will doctor number two eventually become more like doctor one?

Doctor one has admitted to me that he doesn’t look forward to seeing me.  This is because he hardly ever has good news for me.  Is his manner towards me due to his feelings of helplessness or perceived failing?  Does he assume I hold him responsible for whatever outcome is ahead? Does he struggle with the fact as a man and as a professional that he can’t fix my illness?  As a father with daughters, is a patient like me too confronting for him?  Is he more cheerful towards patients with a better prognosis than me?  Is a gruff attitude evidence of self-protection?  Am I reading too much into it and was he just simply tired?

I understand it must be difficult for an oncologist at times.  I understand that we all have bad days personally and professionally.  I understand that my prognosis is one of the worst and we are running out of options but if I can put on a brave and happy face then can’t they do the same for me??

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Attitude

We all know that having a good attitude can make a big difference to our lives and how well we deal with challenges, set-backs, disappointments and so-called failures.  A positive attitude can help us overcome life’s many hardships with a little more ease and grace.

I have noticed that the attitude I chose to go into hospital with this last time made a big impact on how well I coped emotionally with the challenge of being back in hospital.  My attitude helped to minimize a lot of the frustrations that being in hospital brings.  It helped me to be more tolerant and patient of the systems that are followed, the mistakes that sometimes happen and of the wide variety of personalities we encountered.

I feel as though my attitude, focus and determination also helped me breeze through treatment physically.  I believe the power of the mind can have a positive impact on treatment outcomes.  You don’t have to look hard to find books that document cases of this e.g. 'Love, Medicine and Miracles' by Bernie Siegel.

When in hospital, not only do I benefit from a positive attitude but so do the people I have contact with including my supporters.

Attitude can be the difference between being an enjoyable person to be around and an unpleasant person to be around. 

My illness is a crappy situation.  The doctors and nurses jobs must be pretty crappy at times on so many levels too.  Why not try to make a crappy situation a little bit better by smashing it with a brilliant attitude?  There are places we would all probably rather be but can’t.  Why not make where we are a little bit better?  Bringing some lightness and fun into hospital makes it more bearable for everyone. 

We enjoy chatting to everyone we come into contact with in hospital and adding some cheer to their day. We play, we tease, we joke, and we laugh with them.

It doesn’t matter who we are talking to.  We take an interest in everyone we come across…. doctors, nurses, tea ladies, cleaners, orderlies. We enjoy finding out about their lives and what makes them tick.  We remember these details and build on our conversations on each hospital stint.  We are polite.  We are grateful for all their work.  We empathise with them and relate to them as humans, not their job title.  It helps that Raymond and I are both intensely interested in people and we bounce off each other when engaging with them. 

Whilst I think it would be unrealistic to expect to be positive and upbeat 100% of the time every time I go through a round of treatment in hospital (especially with some of the side effects of drugs),  it certainly served as a good reminder of the benefits and will be something I will reflect on in future treatments.

The Salvation Army brass band that plays outside the oncology ward on Sundays always helps to lift the spirits!

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Hi Ho, Hi Ho it's back to ward M5 we go!

Back to hospital we go!

Since being on the oral chemo tablets (Etoposide) my leukemic counts have continued to sky rocket, doubling every couple of days.

Another round of high dose chemo was what we agreed on with my specialist as being the best course of action for helping me get down the aisle on our planned wedding date.  This is the same treatment I had recently, which consists of six doses of Cytarabine.

It was either that or the same cocktail of chemotherapeutic agents I had upon arriving home from our holiday in Samoa and we all know how that went!  That would have carried too many risks, would have meant postponing our wedding and would have taken too long to recover from.

The other option was to do nothing until after the wedding but judging by the way my leukemia was behaving it was highly likely that I would have battled with haemorrhaging, infection and / or death.  Not ideal.

So we've played it safe.  Hugh obviously realizes how important it is to us and how much we look forward to getting married and this has been a consideration in his decision making over the past few months. I have a feeling that us getting married is also something that he will quietly celebrate, not that our relationship status makes any difference to him, but because he will have helped me achieve something that other people my age often do.

I've come into hospital feeling very determined and upbeat this time.  I promised myself to really make a giant effort in being positive, tolerant and strong.  I had enough time to prepare myself and organize lots of things to help keep me entertained.  I've been busy making confetti cones for our wedding and have brought a quilt in that I've been making to finish off.  I would actually go as far as saying that I'm enjoying my time in hospital.  I think the pep talk I gave myself before coming into hospital and having some idea of what to expect has really helped.  Also, the goal of getting through treatment and making a speedy recovery in time for our wedding has given me something to focus on and aim for.

It's nice being back amongst our friends, some that we are even on hugging terms with now.  We enjoy seeing our favourite nurses and our not so favourite nurses.  I can hear other patients in the other rooms, hoiking, spewing, chatting, listening to their TVs and in a funny way I feel a sense of community!

Hugh is looking into treatment options available in the United States for after our wedding.  We have our fingers crossed that something promising, if only even mildly, will spring up.

Until then I'm chowing down the hospital food like a good girl and have a drawer full of high energy foods to help me maintain weight for our big day.  With how I'm doing so far, not only will I be maintaining my weight, I'll be putting some on too!

First night in.  Judging by my smile it must have been a good cup of tea

Allowed out for the afternoon on day two.  Having cuddles with Jack

Keeping busy making confetti cones

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Faith Like Potatoes

I’ve always been a very spiritual person.  Over the years I’ve dabbled with different religions and beliefs.  To be honest, in recent years (thanks to undesirable experiences of church as a young adult) I’ve been very anti churches and anti-Christianity as a faith.  It’s always sounded like a great fantasy to me.  Don’t get me wrong, I have Christian friends who I love dearly and totally respect them and their beliefs, it just hasn’t felt right for me. 

Since relapsing with leukaemia I have somehow drawn lots of Christians around me.  My partner, existing friends, new friends, even strangers….it’s been quite unreal.  I’ve had plenty of opportunity to discuss the religion and I’ve been challenged by a lot of it but also a lot of it has made sense to me.  I’m still trying to figure out how some of my old beliefs fit in with Christian beliefs and at times this has made me feel more confused and spiritually disconnected than ever.  I strongly believe that I have drawn all these Christians around me for a reason though and I am eager to explore that reason. 

I would say the majority of people facing death ponder what comes next and spend time questioning even life long held beliefs.

At this stage I am trying to put aside the finer details and start by developing my own relationship and understanding of God.  I have found myself attending church again and feel a strong comfort from the gathering of people who have come together in unity with a shared goal and passion of unashamedly and wholly praising and worshiping a higher spiritual being.  I’ve never experienced that outside of a church.  The peace and love that can be felt is phenomenal.  They sing as if they are free.

I believe God can heal me.  I’m just not sure why he hasn’t yet.  There are days when I am angry with him.  Days when I am impatient and demanding in prayer.  Perhaps he never will.  Perhaps he has decided I will touch more people’s lives if I don’t survive my journey.  Or, perhaps the joke’s on me.  Perhaps it’s just because he knows heaven is way cooler than earth and wants me to kick back and enjoy the party with him while we laugh in amusement at the people still stuck down below.  I would like to think my time isn’t over yet though.  I’m not ready to leave my loved ones behind and I’m not ready to give up on my dreams.

A friend lent us a DVD that has helped us believe a miracle is still on the way.  A brilliant quote from it was, “The seed for a great miracle lies not in difficulty, but impossibility”.  I guess that’s why I have to have faith like potatoes www.faithlikepotatoes.com


To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

I finally get it

I finally get it.  I think I understand why some cancer patients give up so easily.  The thing about trying to be positive and hopeful about beating the disease is the risk of crushing disappointment.  There comes a time when accepting death is almost less scary than the possible disappointment of not making it, of constantly dealing with fear.  Fighting is hard work.  At least if you accept death you can prepare yourself for it and expect it.  When you make this decision, it's almost like you are taking back control.  The reason why I finally get it now is because at times I have been tempted to give in to this acceptance.

As I’ve thought more about death I’ve begun thinking more about my life and whether the things I’ve done have made it a life worthwhile.  What kind of legacy am I leaving behind?  How long will people remember me for?

A friend contacted me to say they were feeling inspired by my battle against leukaemia and by my honesty and fighting spirit.  They admitted they had been going through a tough time and had been wishing to die in their sleep.  The sharing of my journey and of my desperation to hold onto life had helped them to realise what a gift life was.  It helped them to view their situation differently and encouraged them to make positive changes towards a happier life.  

I am so grateful that this friend contacted me to tell me how my story has helped them.  It has made me feel like if I was to die tomorrow that my life has been worthwhile and that the disease itself has been worthwhile. 

There is a real comfort in that.


To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Consumed by wedding planning

Since my last stint in hospital I have been very busy planning our May wedding.  It has consumed me.  It suddenly dawned on me one day that I hadn’t given leukaemia much of a thought.  Actually, what is probably more accurate is that it was the first time I had a break from being fearful and in despair.  I almost felt like a normal human again doing normal human things. 

My good blood cell counts came up nicely and once they were at a more desirable level I was put on oral chemotherapy in the form of tablets.  With time this was shown to be ineffective.  My blast counts (leukaemic cells) were starting to climb.

My specialist and I were hoping that they would plateau as I continued on the tablets.  Unfortunately this was not the case.  I was instructed to double the dose.  My blood test results today have shown that they are continuing to climb.  I imagine I will hear from my specialist tomorrow to tell me the next plan……a higher strength of chemo?  A different chemo?

It feels a little bit like a race against the clock with our impending wedding date.  We need to get the leukaemia to stabilize so I can put my fancy white frock on.

We remain hopeful and somehow fairly confident I’ll make that trip down the aisle.

With positive thinking and plenty of prayers we look forward to the day.

Recently we had a huge amount of fun with our good friend Chris Lane from Big Kid Film Productions filming an engagement video.  As always, we can’t emphasize how ridiculously talented we think he is and how much of a joy he is to work with!


To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.