Many precious gifts

As ugly as cancer is, there has been so much beauty in the journey and it has given me many precious gifts…….perspective, compassion, a strong desire for authenticity, the ability to prioritize, self-worth, self-discovery, love and gratitude, a closer connection to people and a closer connection to ‘God’.

In times of self-pity I try to remind myself of these little gifts.  Additionally, I like to remind myself that it could be worse or that there are people out there with greater suffering.  Even though I am young at least I have got to experience owning my own home, travel, work, being in love, and being of the legal age to enjoy many other things.

There are kids out there with cancer and other illnesses who may never get to experience those things.  There are people out there who live a miserable existence who are so burdened and have never experienced the happiness in life that I have.

Don’t get me wrong, I'm not always positive.  There have been many moments of self-pity and anger at the unfairness of life but these thoughts help me to get over myself and battle on with gratitude.

There’s always going to be people who treat you like crap and we’re always going to be faced with shitty situations in life.  I’m a big believer in always looking for the learning involved in every situation so you can take something positive away from it.  I also believe in doing your best to maintain integrity throughout those experiences, no matter how difficult or unjust they feel.

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.

The "should do's"

Sometimes it feels like there is a lot of pressure to be doing the “right” thing when you have cancer.  There are so many books out there on cancer and recommended diets and therapies and people who mean well that pass on information about miracle cures they have heard of.  All this information and advice can be overwhelming.  I often question myself, “am I doing enough?” 

I have tried so many different things, some that seem to help and some that seem to make little or no difference. I have gotten to know other cancer patients during the years and it can be easy to compare what you’re doing with what they are doing.  Often information and tips are passed between each other, which is fantastic but I have learnt to do what feels right for me and to not feel pressured into doing what other people think I should do.   I have become a lot more relaxed recently and have tried to drop my own "should do's" from my internal dialogue.

Sometimes it feels like I’m being judged if I’m not doing the “right” thing.  If I eat a biscuit, enjoy the odd glass of wine, coffee or paint my nails with “toxic” nail polish (shock horror!) it’s as though some people think I have committed an absolute sin or like I’m not taking my health seriously. Of course this may not be the case at all and could simply be my own paranoid thoughts.  After all, I know and understand these judgements because the uptight naturopathic part of me used to make these same judgements back at the start of this journey.

Until recently, I put a huge amount of pressure on myself to eat a perfect diet…..sugar free, highly alkaline, no red meat, veggie juices etc etc.  Whilst I still eat a healthy diet, I have learnt that the stress, guilt and self-beration for slipping up on my diet or for not feeling like I am doing enough to try cure myself is just as harmful if not more so.  

Part of me wants to live like a saint and do everything I can to take care of my health to try get as much time here as possible.  Yet I also think it is important to let go of all the worry and enjoy life!  Have fun and laugh!  It has taken me a long time to convince myself of this but now it feels to me like a healthier way to be and is probably just as effective in extending life.

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.

Expect a future

When you have a life threatening illness I think it’s important to think of the things that matter most to keep you going and to remind you of what you're fighting for.  Having goals helps you to keep looking forward and to visualise and expect a future.  

I’ve made a number of bright and happy vision boards with positive and encouraging messages.  I have found this to be an enjoyable and helpful process.  It certainly helps to brighten up a stark hospital room as well!

In saying all this, I think it is also really important to live in the present moment.  When you’ve been given a death sentence living in the now can be challenging.  Worrying about the ‘what ifs’ or ‘how longs’ can be terrifying.  Focusing on the times that I do feel good, the days where I do have my freedom helps me to stay calm and happy.  Of course living in the present moment is good for everyone’s sanity, sick or not!  

I find breathing exercises, meditation and mindful awareness about my surroundings, activities and movements help me to stay in the present moment.  It’s not always easy to remember to do it but it’s a habit well worth trying to develop, even if it’s as little as 5 minutes a day.

In honour of my friends

Today’s blog is in honour of my friends and supporters.  

I know it can’t be easy to know what to say or to delight openly in milestones and exciting life plans.  It must be difficult to know how much acknowledgement to give to my health stuff and how much to pretend it doesn’t exist.

What I want my friends and supporters to know is that they have all been perfect.

I am so grateful for the friends who have held me in their thoughts and prayers.  For the efforts they have made and for the thoughtfulness they have shown during their own busy lives.

I have been humbled by the kindness of friends and even by those that I do not know that well or know at all.

Cancer has shown me the goodness that exists in people and it has been a beautiful thing to witness.

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.

In honour of my family

Today's blog is in honour of my family. 

Not only have I been on my journey with cancer for the past four years but so has my family.  Sometimes I think it would be much harder to be facing the loss of a loved one than facing the possibility of losing your own life. I can see the stress and worry has taken a toll on my parents.  I feel bad that they are facing this when they should be looking to their retirement with excitement. I imagine the feeling of helplessness and loss of control would be far greater for my parents and brothers than what it is for me. 

My fear and biggest feelings of sadness and guilt is the pain I have already caused them and possibly will.  I have experienced this pain and witnessed the same grief in others after losing a brother to suicide in the past.  I hate to think that my family may possibly go through this pain again as a result of me.

My family have given me so much support.  They have always been there for me throughout treatment and my tough days.  They have remained hopeful and they have given a delicate balance of the right amount of emotional support and empathy and the right amount of grieving privately.  I have felt the difference and seen the results that love and support can make and I feel so lucky to have had it. 

My brother’s lives have most likely taken backstage, while me and my problems have taken the limelight.  I hope I can repay them by getting healthy so we can all focus on them again.

My family mean the world to me.  Being around to look after my parents in their old age is something that motivates me to get healthy again.  Let’s hope I can return the favour and be there for them in the years to come.

In honour of Raymond

Today’s blog is in honour of my fiance.

We had a relationship together years ago eventually going our separate ways.  Seven years later we came into contact again as friends.  After some time, both free agents and to be honest, both unwittingly, we fell in love again.

It would have been easy to have dismissed the idea of being with me.  Let’s face it, I have terminal cancer, why even consider it an option?  There are so many wonderful girls out there with far less problems than me or would you say, with greater certainties than me.

People have commended me for my bravery.  However, I’d like to acknowledge the bravery of a man for opening himself up, for making himself vulnerable, for supporting another person and being man enough to deal with my powerful emotions as well as their own.  Emotions they have chosen to open themselves up to.  Of course, he says it was never a choice.

A man who has previously supported and witnessed his own father lose a battle to cancer.  Imagine the emotional triggers for him that lie within my situation.

I am so grateful to have the support of a very brave man.  A man who is strong yet vulnerable at the same time.

I feel very lucky to have been given a chance to love and be loved.

Us eight years ago in our first relationship

Relationship number two

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.

Loss of freedom & control

The hardest part of having cancer for me is the loss of control and freedom.

I consider myself the type of person that if I want something I will take action to make it happen.  I feel like I’ve always gone after what I want even when it pushes me outside of my comfort zone.

In my journey with cancer the part I find most difficult to wrap my head around is not always being able to go after what I want and not being in control.

As a child and young woman I’ve always been very active and healthy.  I’ve never had broken bones, surgeries or illnesses, just the common ailments a child usually gets.

The scary thing for me, is no matter how hard I try to do the right thing for my body, no matter how many therapies I spend all my time and money on, and no amount of positive thinking seems to bring my blood test results under control.  Of course, I don’t know how much worse they would be without those things but my body seems to do its own thing.  The times I am certain my blood test results are going to have improved they come back even worse than before.  My body has a mind of its own and we seem to be in a continual fight with each other.  My body doesn’t feel like mine anymore.  I don’t seem to have any control over it and that is a new experience for me.  All the hard work I do doesn’t pay off.  There are no points for effort and that feels really unfair.  

It is a major kick in the guts when my blood test results move in the wrong direction and when they do so at great speed.  It becomes a challenge to remain positive.  Doubt creeps in usually in the dark hours of the night when I’m lying in bed and panic sets in.  I could wake my partner who is sleeping peacefully next to me.  I could wake my parents for the type of comfort only parents can give but why disturb them when there is nothing they can do about it?  When I’m with these thoughts that’s when I feel truly alone.  No one can help me.

When I think of the possibility of dying, I think, “no, that’s not right.  I’m not going to die because I don’t want to.” While I believe the zest for life helps with chances of survival I’m beginning to realise that maybe it isn’t always that simple.  My worry is that perhaps I can’t always have what I want.

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.

Recovery

A lot of time has passed since the last blog entry.  In that time I have made a good recovery at home.  It didn’t take long to lose all the excess fluid I was carrying thanks to low albumin levels in the blood, which was causing the fluid to pool outside of my cells and in the tissues.  In the space of a week or two I Iost about 15kg.  You could literally see my body transform before your eyes!  It was good to be able to recognize my body again and to be able to move about freely.  It took longer to build the strength in my legs that I had lost from being bed bound in hospital.  Getting up and down stairs was a mission and we have quite a few of those at home!  I have become a lot stronger now, back to playing about in the garden with my pooch and playing frisbee with Raymond.  Though I’m not as quick off the mark as I used to be but I guess that’s to be expected. 

Being at home again has been absolute bliss.  Having my freedom back has been heavenly. I’ve enjoyed catching up with friends, getting back into my therapies, spending the time with family, having date nights with Raymond and gorging on delicious fresh and healthy foods (with a lot of treats thrown in).

Treatment proved to be very effective in dampening down the leukaemia.  My blast count dropped from an estimated 90-100% to 2% - a normal percentage in any healthy individual.  I was told prior to treatment that in an ideal world it would only take one cycle of chemotherapy but realistically speaking I would need at least two cycles.  The leukaemia was successfully knocked back after just one cycle.  Another miracle to add to our list!

After Australia declined our request for a second transplant, my specialist contacted the UK who confirmed they were willing to give me one.  Tickets were booked for Mum and I to fly over to get the ball rolling.  Before paying for our tickets I thought it would be a good idea to ask the hospital to investigate some headaches I had been having in case I had another brain bleed. The headaches weren’t severe like last time but they were consistent and so I wanted to be on the safe side.  A CT scan was performed, which was thought to show a new small bleed.  This led to a lumbar puncture and bone marrow biopsy.  

The lumbar puncture showed no leukemic cells in the spinal fluid – phew!!  A second specialist had a look at the CT scan and was of the opinion that the bleed was residual of the original bleed and not a new one at all.  Double phew!!  Unfortunately in the space of a month or two my blast count leapt from 2% to 18%.  This may not seem like much but it is evident of the aggressive nature of the leukaemia.  Emails were exchanged between my specialist and the specialists in the UK with this new information and the plans for a second transplant have been put on hold.

Another round of the same treatment I had at Waikato has been suggested followed up by a therapy known as donor lymphocyte infusions (DLI).  This would need to be performed by Auckland hospital and therefore would require their agreement in treating me.  They have already given me one dose of DLI therapy at the beginning of last year before discontinuing it due to the belief it would not be effective.  Therefore, I do not hold the greatest hope in them jumping on board.  Time will tell.  I should hear back in the next day or two.

It has been quite the emotional rollercoaster!  Grieving leaving home, family, Raymond and Holly and the NZ summer behind to head to the UK.  Thankful to be considered for another transplant yet grieving for the sickness and huge risks that lay ahead.  Now that it has been cancelled I’m grieving for the decline in my blood counts and the loss of a possible cure.

For the next short while I will try plough my way through my list of things I want to do and get done before being stuck in hospital again.  It’s a funny feeling trying to get organized before knowingly becoming very sick and an even stranger feeling trying to finish off jobs etc in case it’s the end and I don’t make it.  It’s the same kind of organizing that you do before going on holiday except I have to stop and remind myself that there will possibly not be any chance of finishing off things that didn’t get done before hand.  There may not be any attending to things at a later date.  

The scary part is how normal this kind of planning becomes when you’ve been battling cancer for awhile and how numb and pragmatic about it you can be.  I’ve noticed this can make people around me slightly uncomfortable and upset.  It can still surprise me every now and then how when I’m arranging things with people for a future date that I can’t help but wonder if I will still be alive at said date.  Sometimes I hear myself saying internally, “hmmm that date might not work because I might be dead” as if it is a casual matter of being out of town.  This extends to purchases I consider making…. “I probably shouldn’t buy that because I might die soon and it might not be of any use to anyone else.”  Some people may say that it is a negative way of thinking but that’s the point I’m making; it isn’t me thinking doom and gloom, it’s about how I’ve come to think about death and the issues surrounding it in a practical way.  The part that baffles me is not knowing when I started thinking in this way.  It can make my heart sink and I sometimes ask myself, “how did it come to this?”

The thought of going back to hospital has my spirit kicking and screaming. I hate being cooped up in a room attached to machines for weeks on end.  However, if it works then that is just what I have to do and I just have to get on with it.  Here’s hoping it will be a smoother ride than the last!

Recovering at home

Swollen legs

Elephant feet

Back to normal.....scaly thighs from cracking skin due to stretching

With my furry babes

Off to the races for Raymond's Christmas work do

High tea with my girlies

New Years Eve at the beach