2011 - A YEAR OF EXTREME PAIN BUT ANOTHER YEAR OF LIFE AND A YEAR OF VICTORY

2011 has been a very difficult year for me because of the extreme levels of pain I have experienced in coming off morphine, but somehow I have managed to have more victory in my life this year than in any of the past 10 years.

Coming off morphine in February was a wonderful accomplishment after withdrawing from it since October 2008. It has been a hard road coming off it and I felt such a great sense of victory on the one hand. However, on the other hand it has meant an extreme rise in my pain levels.

In September, after 10 months of desperately hoping I was going to be able to have one of the two types of surgery to potentially relieve my pain I was told that it was just too risky and wasn’t going to happen. Both of the surgeries had the potential to seriously set me back both physically and cognitively and my doctors weren’t prepared to take that risk. Following the final appointment when I found that out I wouldn’t Ibe having any operation I was utterly devastated, but I came to a turning point with a realisation which I wrote down.

“Every time I go to an oncology appointment

There is a waiting room full

Full of people who would do anything

To have what I have had

Seventeen years

Seventeen years of life after diagnosis of a brain tumour

No life expectancy was given to me

For that I am extremely glad

As there is no way the doctors could have foreseen

Just how long this would all go on:

Brain injury

Side-effects from drugs

Long term effects of neurosurgery

10 years with a fogged brain

But life

17 years of LIFE

Is what I have been given

A gift that every one of those patients

In the oncology waiting room

Would do anything to have."

So even though I have been left with the daily physical struggle of pain, I have also been left with a deep sense of gratitude.  

In reaccepting that the pain was here for good I made a conscious decision that I wasn’t going to let it hold me back from living anymore. Obviously there are certain things I cannot do, but there were also too many things in my brain that had “I can’t” sign posted before them. In September I decided to challenge those statements.

In late September, while on holiday in Northland, I went tramping for the first time in 15 years. Then in November I travelled independently for the first time in 10 years. These may sound like very small accomplishments to a person who has a body that functions normally but my pain and levels of weakness have been so extreme over the past 10 years that neither tramping nor travelling independently have been a remote option for me.

For many years the verse Philippians 4 : 13, “I can do all things through Christ who strengthens me” has played a large role in my life, especially in working out each day and losing 53kg between 2006 and 2009. But this year I have had to speak this scripture to myself as an affirmation to keep me going and to give me the strength to persevere and get through each day. It has become my mantra and when the pain has intensified, I have sung this to myself with a passion and feel as though I truly have gained strength in doing so and have overcome the mental block of this pain. This doesn’t mean that it makes the reality of pain any less, but rather that I now know that I can do all that I need to do in life through locking into God’s strength. There is now nothing that I will not try as I step into this new year of life.

THE POWER OF THE TONGUE - TO ENCOURAGE OR DESTROY

Proverbs 18:21 “The tongue has the power of life and death”(NIV)

Proverbs 16:24 “Pleasant words are like a honeycomb, sweet to the soul and healing to the bones.”(NIV)

Proverbs 15:4 “Kind words heal and help; cutting words wound and maim.” (The Message)

In my life time I have witnessed and experienced the extremely negative power of the tongue through discouragement, but I am blessed to have also experienced the wonderful power of the tongue through encouragement. The power that the tongue holds amazes me in that what we say can bring either life or death to a person’s spirit.

We all have beliefs about ourselves stored in our minds but how did they get there? I believe that those beliefs are established mostly through what we have heard repeatedly throughout our childhood.

I grew up repeatedly hearing from an elderly relative that I was “big”, which is entirely accurate – I’m 184cm tall and not of a small build - but the way in which this was said to me was never a matter of fact kind of way. It was said as a put down, in comparison to my cousins who were smaller than me.

I think that one of the first ways that the tongue can be destructive is through comparing one person to another. God has made us all uniquely different, but I don’t believe that that difference is something that should be seen, or spoken of, as being a negative thing. God created me as I am!

One thing that I decided many years ago was that I wasn’t ever going to say negative things to people about their appearance but was going to instead try and build people up - finding the beauty in people and telling them what I saw. So many of our beliefs about ourselves are based on what others say, so why not speak out about the positive things we see and help make the messages that other people are hearing uplifting, and positive?

I truly believe that if we see something we like, or something beautiful in someone we should tell them. If we don’t they might never see it in themselves.

MY DIAMOND SHORE

On holiday up at Urquhart’s Bay, Whangarei Heads it has been an extremely beautiful but truly wild day. I had decided earlier in the day that before we headed home I wanted to collect some sand and shells from Smuggler’s Cove to use in some artwork

My back pain was pretty intense and the wind was blowing a gale but with iron clad determination I decided I was heading over there. Before even leaving the property I realised that I was going to need one of Darryn’s (my brother-in-law) tramping sticks and by golly I was glad I went back and got it, along with a rain coat to wear as a windbreaker.

Going over and up the steep hill, I was walking into the most intense headwind that I think I’ve ever experienced. At times I felt as thought my forward steps actually weren’t moving me forward at all. I had to use the tramping stick to pull myself up the hill with every step. When I reached the highest point of the saddle the full belt of wind really hit me head on and to my disbelief, as Smuggler’s Cove’ is usually such still water, there was small surf over there.

Once I had descended to just above the boardwalk a lot of the golden sand was blowing in my face - it was no problem but showed just how intense the wind was. But what there was to behold left me utterly speechless. It was as though the beach was covered in diamonds all sparkling at me, I have never seen such beauty! My personal treasure, a blessing from God just for me – and a whole beach of it! How glorious!

In collecting the sand I ended up having to sit on the beach as the wind was too strong to bend over in. I gathered some beautiful shells and was once again in awe of God as I noticed that it was as though each shell had a different, stunning work of art on it.

Seeing this reminded me of something my tent leader at Ponui Island Christian camp in 1991 had said to our tent group. She got each of us to collect two shells and then to bring them all together. When we did she got us to put them on the ground in the middle of us. She then told us to look at the beautiful details on each shell, and then pointed out how in their beauty they were all completely different to all of the other shells.  She then went on to say how God had created each of us very differently and yet very beautifully and that we need not try to be like the other ‘shells’ as we were all examples of God’s beauty in creation. That wee chat on the beach at Ponui Island has stuck with me all these years.

Back at Smuggler’s Cove I tied my bag of sand and shells onto my walking belt and headed home praising God for his beauty in creation.

I felt as though I was being nudged and ‘encouraged’ by the wind the whole way home, and couldn’t help but smile all the way and share with the tourists heading over there what they were going to see – I was just buzzing!

Now, hours later, I can’t help but see it as a metaphor for life. Sometimes we feel as though we are walking uphill against a fierce headwind and it seems impossible to reach the summit.  However, all that we need do in those times is put one foot in front of the other, locking into God for the strength in His steadying love, and continuing. Little do we know the absolute beauty that we will see when we have come down from the mountain and are once again on level ground.

Truly there is the most extreme beauty to be found in the stunning simplicity of creation.

17 YEARS SINCE DIAGNOSIS

Today, the 3^rd of October, is the 17^th anniversary of my being diagnosed with a brain tumour. This means that I have now lived as long with this brain tumour as I had lived unaware of it.

Even though I know that I am incredibly blessed to have lived for these 17 years with this brain tumour, the effect of survivor guilt cannot be dismissed.

I have seen mothers with several young children die of cancer, young fathers with unborn babies they will never see, infants being diagnosed and dead within a year. Then my surviving 17 years with no one depending on me, no one needing me as their role model.

I have seen innocent young children, men and women who have their whole lives ahead of them, lose their battle - and yet I have kept on going. It doesn’t make any sense, but then cancer doesn’t. 

None of these people deserved to be struck down with cancer, or deserved punishment. Sometimes, I believe, we do reap what we sow, but I do not believe that cancer is some higher being’s way of punishing us.

Cancer isn’t selective. It does not take into account socio-economic status, nor the amount in your pay cheque, nor how high your status in society is.

Grandparents, mothers, fathers, teenagers, children, criminals, priests, smokers, non-smokers, meat-eaters, vegans – nobody is immune to getting cancer. Nearly everyone knows someone who has been affected by it.

It is not as though I have done anything that makes me any more deserving of life than anyone else that is the reason that I have survived for this amount of time.

Even though I feel incredibly blessed to be alive, I have had to suffer and merely ‘exist’ for very long periods of time.

I couldn’t influence or change what has happened because of the tumour’s location and nature over these past 16 years, but what I have been able to control is what I do with what I have learnt through these experiences, and how I let it influence my daily life now.  This is my choice. No one chooses to get cancer but we all choose how we deal with it and what we do in spite of it.

Do we become bitter, holding a grudge against the rest of the healthy world? Or do we choose to continually forgive others? Do we become consumed with anger, or choose to live in freedom?

It all comes down to whether or not we want to truly live every day of the rest of our lives, be that six weeks, six months or 60 years. The reality is that no one actually knows when they are going to die, but we can all choose how we live. Tragically, too many people don’t realise this.

I think that for everyone, but especially cancer patients, it comes down to learning to live ‘in the now’. Not living with one foot in the past, with regret and anger. Nor living with one foot in the future, fearing what you may yet have to suffer, or living in dread of the cancer growing, spreading, or for some, returning. But rather living with both feet ‘in the now,’ being grateful for each and every day.

Taking steps, even though they may be very small steps, towards a hope-FULL future has been a big thing for me. Even though these steps have at times been very small and at snail’s pace, more important is the fact that they are all heading in one direction - forwards.

Daily we all have to choose whether or not we really want to live for that day, and for the rest of our lives.

I feel incredibly blessed in that I have been taught this reality young and look forward to the many days and years ahead.

MY REASON FOR MY STARTING A SECOND BLOG

On the 14^th of February, 2010 I started my KIWIBRAINTUMOURSURVIVOR blog. This blog has been being written in retrospect and I am only up to 2002 at this stage.

I have had many exciting things happening in my life over this past year, medically and spiritually, and I have been learning so much. I am inspired by different things every day.

With this blog I hope to be able to share the experiences that inspire me, be it through living with pain, to simple things that inspire and delight me. Hopefully writing on here will be much more regular than my first blog KIWIBRAINTUMOURSURVIVOR.

I hope that you will find something in this that you can relate to or that might inspire you or give you hope.