WHY HEADACHES CAN STILL SCARE ME

Since the end of May this year I have been experiencing an extreme increase in the intensity of the normal (well, my normal) 24/7 headaches. Fortunately I have only been getting these extreme headaches once a week but they are incredibly hard to deal with when they are here. When I have them the intensity of the pain comes in surges; it varies from moment to moment.

When I was first diagnosed with my brain tumour the only prominent side-effect of the tumour was headaches and a lack of energy. So I have lived with headaches for a very long time (20 years in October). However, there have been periods when these headaches have intensified. Generally when my shunt has blocked.

Because of where my brain tumour was, and a mound of scar tissue now is, there is a blockage of one of the main ventricles (or ‘pipes’) in the brain. Because of this cerebral spinal fluid wasn’t able to drain out of the brain and there was a huge amount of pressure in my brain (this state in the brain is called hydrocephalus). They put a shunt in and this functioned well until the late ‘90s when it started to block.

In 2000 the shunt blocked well and truly and they tried to remove it unsuccessfully. I had to have 6 lots of neurosurgery in 8 days as the brain had grown attached to the shunt and their trying to remove it caused haemorrhaging, clotting and, it is now thought many small strokes. 

After all that surgery I had four years without any further blockage problems. My tumour grew and I had to have radiotherapy in 2002, but no shunt blocks. However, in September 2004 I had a bout of extreme headaches with visual disturbances and it was found that my shunt had blocked again. On the 14^th of September I went in for surgery and came out of it well. They replaced the shunt and everything seemed to go according to plan. My vision came right and it seemed like I was out of the woods.

However I began to have severe headaches with visual disturbances again on the 20^th of September. These increased and I was woken in the night by another violent headache that was an ‘off the radar’ headache (in terms of intensity) with extreme visual disturbances.  I was briskly taken in to hospital where, because the only neurosurgeon able to do the best surgery was out of the country for another 24 hours, an external drain was put into my brain. The following day they put a clamp on the drain to cause the pressure in my brain to increase again (as, in order to do the surgery, there had to be an excess of fluid in it).

On the 23^rd of September I was taken down to theatre to have a ventriculostomy done. In spite of its long and complicated sounding name, a ventriculostomy is quite easy to understand once explained.

Because there is very little room in the skull for anything other than the brain, the level of cerebral spinal fluid has to be kept stable. If there is excess CSF (cerebral spinal fluid ) in the brain this causes pressure in the brain, leading to intense headaches and visual disturbances. When this is the case a form of drain has to be inserted into the brain to drain the fluid. So on the 23^rd of September Mr Law did a ventriculostomy.

In lay-man’s terms, a ventriculostomy, unlike a lumbar drain, is open all the time. It's connected (as with a lumbar drain) to a sterile, closed system. It's also connected to a levelling apparatus that in some cases is kind of fancy and in others involves, like, an old radio antenna and a marked pole. 

The goal of my having this was to get the CFS in my system draining through this new, levelled system. I was watched like a hawk by a nurse to make sure that the ventriculostomy drain stayed at a particular level, ordered by the doctor. During this time it is monitored, to check that there wasn't too much or too little fluid draining out.

With this surgery there were similar risks as having a new shunt put in, meaning that it could block. The operation has a 60 – 70% success rate so there was a 30 – 40% chance a shunt would have to be put in again. I am so incredibly fortunate that the ventriculostomy didn’t block again but there is always the possibility that it could happen and that is why I find it frightening when I have a return of the symptoms of blockage.

After these 3 lots of surgery in 1 week in 2004, with 2 lots on consecutive days, I was pretty shattered. It all went well and was very straight- forward for the surgeons. However, after this surgery I had to be put onto a high dose of steroids to reduce the swelling in my brain.

I had to remain on steroids for several years and, well, my experience on steroids is a whole other blog. In short, I put on 40kg in 10 months on the steroids which adds another daunting factor to ever having to have this surgery again.

So even though to the outsider, what I have been experiencing of late just sound like mere headaches, their being a very distinctive type of headache carries with it many unpleasant associations and anxieties.

On Friday (the 5^th of July) afternoon I had extremely intense head pain with the pain around my eyes becoming extreme in the evening. In reality, I should have headed to hospital then (as I had been directed by my neurosurgeon) but we had been in the city all day and were half way home in peak time traffic and I just couldn’t face it. I stated that I would do so if it was bad the next day. Yesterday it was bad again, but not as intense as on Friday night. We went into the hospital and I was eventually given a CT scan that didn’t show any abnormality. However, because a fluid blockage in the brain can drain very quickly I am still unsure as to whether it can be ruled out (I had many episodes of my shunt blocking in the evening, and then draining by the next morning when I was scanned before it was ‘caught’ blocked in a scan in 2000).

It has only been in meditating on God’s words in the Bible, and meditating on his promises for my life that I have been able to keep my anxieties about all this at bay.

The key verses that have really been feeding my spirit over these past few weeks have been these ones below.

Proverbs 3, verses 5 – 6 says “Trust the Lord with all your heart and lean not on your own understanding. In all your ways submit to Him and He will make your paths straight.”  Trusting God is to me absolutely imperative as I can’t actually see  what is going on in my brain. Whenever I try and work it out, I get it wrong and get anxious so in my mind it is only sensible to trust in God who does know and understand what is happening.

The second verse is one that has comforted me from the day I was diagnosed when it was given in a card to me and my family. It is Psalm 139 verse 16: “Your eyes saw my unformed body;  all the days ordained for me were written in your book before one of them came to be.”

Knowing that God has known about what is new and frightening to me since before I was even born has always been a great assurance to me.

Jeremiah chapter 29, verse 11, I also find to be an incredible reassurance. It says “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

And finally Psalm 91 verses 14 – 16: ““Because she loves me,” says the Lord, “I will rescue her; I will protect her, for she acknowledges my name. She will call on me, and I will answer her; I will be with her in trouble, I will deliver her and honour her. With long life I will satisfy her and show her my salvation.”

This chapter in the book of Psalms in the Bible was again given to me in a card when I was first diagnosed and has always brought me great reassurance. Knowing that God is with me when things get troublesome and hard, and knowing that He will deliver me has always given me a sense of peace during trials.

So even though things are, at times, scary with these current extreme flares in my headaches, neck and eye pain, and even though I am having recurrences of the symptoms that have led to trauma in the past, I am holding onto God’s word, God’s faithfulness to me in the past, and the hope that there is in that. 

A LIFE LESSON TAUGHT BY A 7 YEAR OLD - PRACTICE WHAT YOU PREACH

Surrounding my sister’s holiday home in Urquhart’s Bay is spectacular scenery.

 There are many day walks of various lengths that can be done. There is one particular walk that I love that takes you over to Smuggler’s Cove’. It involves a steep rise for half of it, and then steep walking down to an exquisite beach. 

Yesterday morning I was keen to do this tramp and managed to persuade my 9 year old niece, Stella, and 7 year old nephew, Will, to join me. They have hiked a lot up here and are very fit and I knew they were perfectly capable of it. However, as we got to the entry gate of the hike Stella started to complain of having a very sore knee, and Will began to whinge that he too was sore. I decided to take this opportunity to share with them how I have learned to manage my own pain with these hikes.

I told them about a song that I had written to help me with this exact hike with the intense leg pain that I experience. It is based on the book of Philippians in the Bible, chapter four, verse 13 which says “I can do all things through Christ who strengthens me”.  Back in 2011 when I was up here I first started to challenge my beliefs that I couldn’t do these hikes due to my pain. I made it over to ‘Smuggler’s Cove’ every day that summer and when my pain was intense I would just sing this scripture to myself with varying intensity, depending on how much I needed that strength at that time. However, I changed the wording from the actual scripture to being,

“I can do all things through Christ who strengthens me

 I can do all things through Christ who strengthens me

There is nothing that I will not try

For I am empowered with the power of God”

Stella and Will seemed to have taken in what I was saying as they both stopped complaining of their ailments and happily did the hike over to ‘Smuggler’s Cove’.

Later, in the early evening, when we went to walk down my sister’s very steep drive to go swimming, I said to the kids that I might have to take the car down to the water’s edge as my leg pain was really bad. It was then that Will piped up and asked “But Aunty Gabe, why don’t you just sing your song? It will give you the courage to keep coming!”

Will’s saying this was a total reality check as I realised that he had 100% believed that I gained strength and courage (his words) from the words of my song and he couldn’t understand why I wouldn’t also apply it now when this was the case. His speaking up and saying what he did really got me thinking of how it is far too easy to say things to others that have helped me in the past, and then forget to continue to apply them to my life.

This brought to mind a comment that was made to me as a teenager by a non-Christian friend who had said that Christian’s are all hypocrites and never practised what they preached. I wondered if I had become one of the hypocrites. However, in this instance it is more the case that I remember the things that inspire me and help me keep motivated when I’m not weary, but forget them once fatigue is added to my pain.

Will’s comment yesterday really challenged me to not only ‘talk the talk’ but to also ‘walk the walk’ and it is something that I hope I will remember to come back to every day.

I believe that if we are to be true, authentic people, we need to not only mean what we say, but also put into practice what we say.

CONTENTMENT – FOCUSING ON WHAT WE HAVE RATHER THAN WHAT WE DON’T HAVE

Over the past 14 years, since I had 6 lots of neurosurgery in 8 days in March 2000, I have at times felt immense frustration with my body. Especially with the continual headaches I live with and the fact that I seem to have so little control over the chronic pain that I have everywhere.

However, one of the things that has helped me so greatly over the years has been changing my focus. It would be so very easy for me to fall into self-pity mode if I focused on what others have that I don’t have. And especially if I focused on the lives of my friends who were at University with me and what they have gone on to achieve. However it would be utterly futile and actually destructive to focus on these things.

When things have been extremely intense with my pain, and my spirits sink, my mother and father are quick to remind me how fortunate I am to even be alive. When things are trying it is just so easy for me to forget the number of times that I nearly haven’t made it through my (13 lots of) neurosurgery, and forget how long it was that I couldn’t even see clearly (due to changes in my tumour), and forget how I couldn’t walk unaided, how I had TENS electrodes stuck to every limb with wires sticking out of them that everyone noticed. I forget that I was 55kg heavier than I now am (due to gaining 40kg in 10 months on steroids) and didn’t even recognise myself. It is just too easy to forget how incredibly hard things have been for me at times over these past 14 years and how vastly better my life is now compared to what it was.

Being reminded of these times serves as a much needed wake up call, a slap on the face you could say, to remind me of the freedoms I now experience that I haven’t always had during these past 14 years.

I think that a great way for anyone to sink their view of their own life, regardless of their circumstances, is to focus on what they don’t have rather than what they do. Worse yet is to focus on what others have that you don’t. When we have this frame of mind we are so blind to the blessings in our own lives. And in doing so we are undoubtedly starting ourselves down the slippery slope that leads to the destructive mental state of self-pity.

In the 4^th chapter of the book of Philippians in the Bible, Paul sums this up brilliantly. “……I have learned how to be content whatever the circumstances. I know what it is to be in need. I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well-fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.”

I have found that the only way that I have reached contentment about my physical situation and my circumstances is to try to focus on the blessings in my life. I try to remind myself about what I now have that I haven’t always had, and also remind myself of the freedom I now walk in. In focusing on these things, and on the fact that God will give me the strength to do anything I need to do in life, I have indeed become truly content.

Like the old saying says, “keep your eye on the donut, not the hole”.

WHAT?! 12 LOTS OF NEUROSURGERY AND NOT 10?

Up until a few weeks ago I had thought that I had had 10 lots of neurosurgery in the past 20 years. However, while on holiday recently my mother found that at the back of a book that she had thought was unused, was a journal she wrote during a traumatic time in 2004 when I was having neurosurgery.

Because I have no memory or record of that time I thought I would type the journal up to use in blogs. I was astounded in doing so to find that I didn’t only have one lot of neurosurgery during that time but three. I actually had very similar brain trauma as to what happened with my six lots of neurosurgery in eight days back in 2000, except this was three operatioins in three weeks.

Discovering this gave me a new understanding as to why I now have what my specialists have described as a “huge amount” of scar tissue in my brain, and that it is this that is now causing the pain I live with.

Reading this journal gave me a renewed appreciation of how incredibly blessed I am to be alive, and to be in the positive space that I am in with my life now.

DREAM BIG!

"Everyone is blessed with an imagination. Some just know how to use it better than others. Developing your imagination takes some effort. Don't quench your creativity with thoughts of "I could never do that," or "that's impossible," or "Maybe some other day." Let your mind dream big. Brainstorm, just letting your thoughts run rampant. You may even hit on something that will change the world!

Don't settle for premade, premeasured, prepackaged life. Keep your friends and family guessing what you'll do next. Make life an exciting adventure for you and for them!"
                                            
                                                                - Luci Swindoll

Brain Tumour No More......BUT!

On the 3^rd of October it would be 19 years since I was diagnosed with a brain tumour, and 19 years of living with one, but it’s not any more. Yes, it is 19 years since I was diagnosed, but earlier this year my oncologist told me that he could find no evidence in my MRI scan of any form of malignancy or malformation and that I no longer have a brain tumour.

For me this was extraordinary news and it took me many sleepless nights trying to process it. I kept thinking about the fact that for 19 years I have said that I have a brain tumour, but now could say I had a brain tumour. Even though there is only two letters difference in those two words, the difference in my mind has been huge.

Though this was extraordinary news, what was extremely hard about it was that in spite of my no longer having a brain tumour, the reality of living with constant pain and headaches would not change. Where there once was a tumour, there was now a bundle of scar tissue, this was caused by the 10 lots of neurosurgery and radiotherapy I have had. I was told that this was the cause of my pain and headaches and they would remain with me for the rest of my life. Scar tissue is removable surgically but only if it is in an operable location and as my tumour was always inoperable so is the scar tissue.

So even though the news about my tumour was incredible, it was really hard and a real disappointment to hear that this wouldn’t change my everyday reality of pain and headaches. I felt torn between wanting to celebrate the fact that I no longer had cancer, but also felt really gutted about the fact that my life actually wouldn’t change.

To no longer have a death threat hanging over me is a huge weight off my mind.  It means that when I have a flare in symptoms that used to be a possible indication of tumour growth, I no longer need to worry that there has been some change in my tumour.  I think that until you have had cancer, you have no concept of how much having a ‘ticking time bomb’ inside of you can play on your mind.

Even though I have very little memory of the years between 2000 and 2010, I somehow still have the symptoms clearly imprinted in my brain of when my tumour grew. My visual fields would become crossed, I would fall over for absolutely no reason at all, my headaches would intensify and my balance would be significantly affected. When I have had recurrences of any of these symptoms over the years it has freaked me out. Without even being remotely aware of my thought processes, my mind would automatically jump to “perhaps the tumour has grown again?”

 It has been nothing short of unbelievable to think that I no longer have a brain tumour! I have actually had more years of my life with one than I had without one. I was 17 when I was diagnosed and on the 3^rd of October it will be 19 years since my diagnosis. I am so incredibly blessed.

During my three nights awake after finding out my incredible news my thoughts went over the lives of friends who haven’t been so fortunate. I found myself wanting to weep for their loss, and that they never had the chance to feel as free as I now felt. I also wanted to weep for their loved ones who had to farewell their child, parent, or partner to cancer.

I don’t think that I will ever lose the extreme sense of gratitude to the Lord that I feel. I found myself wondering why God has given me this second chance. I also found myself asking, no, pursuing God as to what His purpose was for leaving me here. I didn’t get any clear answers to those questions but I had a strong sense that I wanted to continue seeking Him, and to continue living my life as fully as I am physically able to. I want to continue trying to do what my circumstances have led me to believe I can’t do. I dearly want to spend the rest of my life pushing the boundaries of what is achievable in living with pain throughout my body.

I don’t ever want to take life for granted and I hope I never will.

THE EMOTIONAL ROLLER-COASTER RIDE TO MY RECORDING 'JUST THIS ONCE'

In my previous post on this blog I shared with you the amazing journey to my recording ‘Just This Once’. However, what I didn’t share was the extreme difficulty I had in that journey. It was not an easy path for me emotionally and there were a lot of hurdles to overcome.

When I first found out that my relatives had generously donated money to pay for me to have a day in the recording studio I was stunned and greatly excited. However, those feelings were quickly replaced with extreme anxiety. As I thought about the fact that they had all put so much money into this I felt a huge amount of pressure that my singing on the album had to be good or I would let them all down. Fortunately my sister spoke with me within 24 hours of these thoughts beginning and reassured me that that was the last thing that my relatives would want. She told me that everyone wanted me to thoroughly enjoy the experience.

In my year of jamming with my pianist, long before the recording prospect even came on the scene, I had battled greatly with insecurity about my voice. Andrew (my pianist) had given me a microphone so that I could record myself and hear “how amazing I was sounding”. However when I recorded myself and listened to it I thought I sounded not just bad, but absolutely horrendous! This was when I realised that, even though I had thought I had long overcome it, my inner perfectionist was still alive and well.

It got to the point where it ended up not being constructive in any way and so I stopped recording myself. Because of my perception of how I sounded I became extremely anxious about people, other than my parents and immediate family, hearing me sing.

Even though our house is quite large, if I had planned to spend time working on my singing, I wouldn’t do so if there were other people at our place. Even if it was at the far end of the house, I didn’t want to even risk being heard.

During the summer, in the months leading up to the recording, when it was very hot I would shut all my windows so that none of our neighbours could hear me. Luckily I have an air conditioning unit in my bedroom so I was able to keep cool at the same time.

I am incredibly grateful that I had a wonderful and very open friendship with Andrew and I was able to tell him how I was feeling. I told him how when he first came to jam with me in 2011 what had touched me the most was his being very positive about my voice at the end of the jam session on his way to the car. It had stunned me that he said that and it gave me enough confidence to keep at my singing. After telling him how I had felt he said to me that he had studied jazz for 5 years and knew a good voice when he heard one. This helped build up my confidence that this was worth pursuing.

However, the insecurity that I felt about my voice was something that travelled with me right through to the recording of our album. What was amazing was that every time I got on with singing I was always freed from it. It was always just a matter of getting over the hurdle of my perception of my voice and letting loose. Once I got going I would become so focused on the music, the lyrics, the timing etc., that all that would take over my mind. Also the sheer joy of each occasion would consume me.

On the day of our recording I was completely free from any insecurity. Even though it was the first time I had sung with anyone else other than Andrew, I felt so incredibly free. I was so excited, which was utterly liberating. I had also been very anxious as to how I would physically cope with the recording, as I find standing long very painful, but I was able to cope with it on the day of the recording.

When I eventually received the finished tracks of our album from the producer, I was so incredibly excited. It was finished and I was so thrilled with how it all sounded, even how I sounded. However, after listening to the album for a couple of weeks it got to the point where I couldn’t listen to it on my own any more as intense critical analysis of my voice would take over. The perfectionist within me was once again running riot. By the time my album release party (about a month later) came around I was once again really anxious about people hearing me sing.

What if they heard the imperfections that I could hear? What if I actually sounded terrible and everyone had just been nice in saying that I had a great voice? What if I was going to publicly humiliate myself? I had absolutely loved my recording experience, but this was different, there was going to be an audience there.

One thing that I found recurring reassurance in during the journey to recording ‘Just This Once’ and our album release party was the fact that Andrew would give me such encouragement every time we jammed. I knew he was well trained in jazz and had worked amongst professional jazz singers and so I had confidence in what he was saying. It was also greatly reassuring to know that Andrew would be there at the recording, and later at our two album release parties. Just knowing that someone who knew my voice and knew me was going to be by my side was so incredibly reassuring. I joked with him that he was my security blanket.

Now that Andrew is living and studying in Sydney, I am entering the next phase in my journey with singing. This is working with other professional musicians. Even though a part of me does still feel some mild apprehension about this, the whole journey through to my recording and the sheer joy of the release parties that followed has instilled in me a confidence that I hope will carry me through.

If you are interested in listening to ‘Just This Once’ you can do so with the two tracks that are on YouTube from the album.  They are ‘Paper Moon’ – http://www.youtube.com/watch?v=NoUQS5_ARDw and ‘The Boy From Ipanema’ - http://www.youtube.com/watch?v=trQU9aaA7oE.

The full album is also available in full on iTunes.