Posted on March 10th, 2010 by Cam.
Categories: Let's talk.
I write this entry as a foreword for the one written a few days ago (below) that I didn’t put up at the time. It seemed like a list of complaints, pessimism, pity etc. but I realise that is just how things are at the moment, so it has gone up. But I have been challenged again in recent days to do my best to alter my thinking in the way I handle each situation faced and how I talk about them or process them.
The easiest option each time seems to be in letting the difficulties beat me. After all, it takes every ounce of energy, thinking power and will to fight against the negative thinking take me to death’s door. I do believe that the mind has phenomenal power over the physiology of the body, and it is a constant fight at this time to keep my body stabilised in health considering all that is going on. I know I need to do more than just stabilise my health in my thoughts though – I need to get better to give my body the best chance possible to live. I don’t stand a chance otherwise.
I still manage each day with painkillers and anti-depressants but I know this will only be for a time. Such prolonged amounts of time in tough circumstances can take its toll and narcotic intervention can have benefits. But I need to fight harder in my thought patterns if I am to get well, deal with grief, avoid mental torment and become productive in my days again.
Keeping a positive attitude is difficult when friends are dying, health is in constant jeopardy, my body is in constant physical pain, my personal life has been difficult and it seems like there is not enough time left to regain anything of worth. This is where I am hoping I can change things through how I perceive, process and present my situation (three p’s a coincidence by the way).
There is a massive spiritual element to this too for me, in that I don’t have the strength to do this on my own I know. The balance of putting the effort in myself, and allowing God to work in me is a tough one to understand.
Posted on March 10th, 2010 by Cam.
Categories: Let's talk.
3rd March 2010
I can’t comprehend the enormity of the last month or so. Therefore, my attempts to record them will be feeble to say the least. There has certainly been a wide range of emotions at play including despair, the excitement of hope and the seemingly endless mental torment that reeks havoc on my mind.
I realise my condition is placed in a Western, middle-class context. But to me, at this time and place, I have never had such desire to remove myself from this earth coupled with the hope that there is a God who longs to be gracious to us, yearns to show us his goodness and mercy, and wants to bring healing to our broken lives.
For someone like myself, who has the best medical care, a loving family and incredible friends, and access to every human comfort known, my difficulties seem miniscule almost. For each individual however, their circumstance can be overwhelming no matter how they compare to others’. Sometimes this is a result of our choices, sometimes it is what we get dealt with. Either way, it is how we interpret, process and respond to each circumstance that makes the difference.
In my head, I picture my life coming back together knowing that there is that hope in Christ – I have seen it before and am convinced God wants what is best for us – whether it is what we think is best for us or not. Then I see the opposite happen at times, or I make choices that contradict my beliefs. It is very difficult to make positive decisions when physically my body points to a future of difficulty.
In the last couple of months, I have gone through another set of breakdowns, resulting in shutting down parts of my life in order to survive mentally. Relying heavily on my amazing family and friends to keep me going has been life saving, literally. On many occasions I have seen and heard myself in such hysterics I have never witnessed before in myself. The torment in my head has at times been too much to bear, and only been helped by prayer or massive doses of painkillers to send me to sleep.
I have learned that there is a sound that comes from us that is reserved for the deepest expression of grief – a sound that is primal, uncontrollable, and involves silence as much as it does a combination of hideous groaning and shrieking. I wouldn’t wish it on anyone, either to endure personally or to observe. But I have experienced it on numerous occasions now. Each time it leaves my body without energy yet anaesthetised from the rush of endorphins, adrenalin and whatever else gets released during this time.
I am currently weening myself of morphine-based painkillers, which hasn’t been easy emotionally. I have used them largely for emotional stability, along with anti-depressants. I have become physically addicted to them, as well as mentally addicted to them. When I have an emotional breakdown , which has been daily at times, I have taken these painkillers to take the edge off the emotional pain. In the past, ten milligrams was enough to do this. Last week Libs told me that 10 milligrams would be enough to knock her out into a sound sleep, so my admission that my three-hundred milligrams per day wasn’t really scratching the surface for me anymore rang some alarm bells for her.
Cutting my dose down hasn’t been easy, and even last night, after numerous sleeping tablets, it wasn’t until I topped myself up with pain-killers that I was able to find refuge from emotional torment in sleep. It is a terrible feeling also when you wake up crying, and you realise that your body has continued to grieve even when you think you have been giving it a break with a sleep. That is just how it is at this time, for many reasons.
Two weeks ago today, my friend Tim died from complications post-surgery for a brain tumour. Tim and I became quite close since meeting about a year ago at the Chemo Gym. Having similar beliefs, we would often pray together for each other’s healing. He was the same age as me, was a doctor at Princess Margaret Hospital, and leaves behind his wife and 3-year-old son. I witnessed his gradual loss of speech in recent months, then the rapid loss of health post surgery until his death two weeks ago. It was confronting to say the least to see someone I had become close to go through those difficult months and weeks. I couldn’t help but think that could be me, will be me, will be all of us at some stage – I just don’t want it before my time, most of the time.
Amongst my closest friends are Keith and Christine who live in London. They looked after me when I was living there 12 years ago and became family. Keith has been battling lung cancer since early last year. It has been on my mind for some time to head over there to see him before he passed away. Not being able to travel safely myself, Libs graciously took a week off work and proposed she come with me to make sure I made it back in one piece. Within a few days of thinking about it, we were on a plane to the UK. We had a very precious time with Keith and Christine, as well as other great friends. It was, again, very confronting as I saw Keith being nursed so lovingly by Christine. His legs had withered away to nothing, he gasped for each breath, most things he ate would be vomited up minutes later. We continued to pray for his healing and his comfort.
It was really difficult to know what to pray for in that situation. Keith was as close to death one could get while still being able to walk and talk, but his discomfort was obvious, and both death and healing seemed as attractive as each other for relief. Again, as with Tim, we pray and pray and pray. Keith is well known for his faithful support of missionaries and he, together with Christine, has been an inspiration to so many. Countless people would be praying for him daily from all over the world, yet he is so close to death, and is in so much pain. I left Keith with the parting comment, “Whatever happens Keith I will see you soon.”
Both Tim and Keith have been faithful followers of Christ and had their hope in Him, yet they have still suffered under the effects of a broken world and broken bodies. The hope that they had, and have, is the hope shared by myself for my healing, for restoration in other areas of my life. It is so discouraging to see my close friends pass before their time, under such discomfort, under such frustration also when it seems like God is not hearing our prayers.
In the discouragement of what seems like a futile battle against a hideous disease, I still count it a privilege to be given such hope that I have in Christ. I know that God is able to heal me, in each area of life. But if he doesn’t I am assured that eternity is waiting for me and I am excited by that. Sometimes I wish it would come sooner than later, especially when things get tough. I admit that I don’t understand why people like Tim are taken before their time, or why it seems our prayers aren’t answered as we want them to be. Tim, like me, was constantly trying to work out God’s mind on his situation, I suppose mostly to work out what could be done to survive. The list of questions I have for God when I see him seems to get longer rather than shorter.
The London trip was a real highlight for me, just in being able to have a precious week with Libs. Any time spent with her is a life highlight. Always has, always will be. Shopping for shoes, eating porridge each morning, stumbling onto Buckingham Palace (“What’s that building there?”) and almost missing flights (which has been our custom) – all go down as being great memories packed into a short, spontaneous trip. I would do it again in a heartbeat.
Now, being back into the real world, each day requires decisions of how to handle each situation that comes up. I struggle with the reality that each situation has so many variables and depends on my health that is largely unpredictable each day.
As far as health goes, I have increasing peripheral neuropathy (numbness/nerve damage) in my back, feet and hands. This is largely degenerative and irreversible. My protein counts are still good, but I still have traces showing up in my urine, which is not a good sign. My concentration is minimal, largely due to large quantities of morphine. There is a cracking in my back, which is also not great news. Night sweats, muscle cramps, emotional breakdowns etc can also be affected by coming off medication.
For now I reside on the family farm in York, but will be moving back to the city in a couple of weeks. It will be my 5th or 6th move over the last year, but hopefully the last for a while.
Posted on March 9th, 2010 by Cam.
Categories: Let's talk.
Back home, wherevery that may be. At this point it is the family farm at York, but will be back down to Perth in the next fortnight if things go as planned. I have been writing but not online, so some thougths will go down soon that have been brewing on the other computer.
Posted on February 27th, 2010 by Cam.
Categories: Let's talk.
Not really much to say on this, but feel very privileged to be back here in the UK to visit friends and have a break of some sorts. Libs and I are having an amazing time, doing our fair share of shopping, eating porridge and drinking hot coffee while it is 0 degrees outside.
It doesn’t get much better than this, but I am still hoping it does.
Posted on February 9th, 2010 by Cam.
Categories: Let's talk.
Actually, on thinking, I might take that last post back and continue to jot stuff down. There is a release that I miss if I don’t get stuff out. So if you don’t mind, I may just keep going. But not now, need a afternoon sleep.
Posted on February 8th, 2010 by Cam.
Categories: Let's talk.
There will be no posting for a while I feel. At this time, I am completely and utterly spent emotionally. In these last 5 days I have hit incredible highs with the birth of a beautiful neice Jemilla Gracie Barr, born to Rach and Michael. The photos are here at www.barrandgirl.blogspot.com . She is beautiful, healthy and so content.
Yesterday I visited a close friend who I met through Chemo Club. We have been sharing our journey together over the last 18 months or so. He is a Christian, paediatrition, father, husband, son, brother to list but a few. We have prayed together and encouraged each other in the journey since the time of meeting. Yesterday he couldn’t talk to me. He is in a hospital bed in his living room and on pain medication only. There is nothing medically they can do for him at this point.
Same too for my friend Keith in London. He treated me like his own son while I lived with he and his wife Christine (who treated me equally as amazingly) during my times in London.
There are others who are not in good health around me. I have decided I can’t put myself in any other situation where trauma exists (yeah, I know, where does one go).
And there are other painful situations that go on at this same time. Today I got to the point where I realised I have emotionally shut down and can’t cry anymore it seems. A sympathetic protective response perhaps. Or just pathetic, perhaps.
So just a note to say things will be quiet for a time.
Posted on January 30th, 2010 by Cam.
Categories: Let's talk.
I arrived yesterday to my tropical retreat, at a friend’s place in Darwin. Farm, comfortable place, and incredible rain and thunderstorms. The smell, sound and sensation of the tropical rain and lush bush is like the best medicine. I love it, really love it. I wish I could carve some up and take it home.
There has been a lot to think about over the last few weeks, but mainly my thinking has been around my responsibility and responses to God’s promises regarding healing. In the past, I have taken more of a passive response - ‘if it is God’s will I am healed, then it will happen - I believe He can do it, but whether He will or not, I don’t know.”
Now that is changing. I haven’t been healed yet, and I wonder why. I feel now I my response should involve an active commitment to God’s Word and promises. I need to believe in the power of the word to transform and to heal. I am needing both. God’s promise to heal us from our diseases is given the same weight as his promise to forgive sin. This is a pretty heavy relationship. If I believe in him for the forgiveness side of things, and live in that certainty, I need to live in the certainty that healing is available to us. I don’t fully understand it, knowing many people who are not healed, but it can’t stop me from acting on what I have seen God do, and what is promised.
At this time, I believe I will get my 70 or so years, or die a hopeful fool. Better a hopeful fool than to have foolish hope, I suppose. I know I don’t have the latter, as I would have given up long ago - this journey has not been worth it to this point as is. I am not ruling out the possibility that I will end up disillusioned, confused or struggling with circumstance in the future, but I believe the option of God’s healing is real, and that hope is worth throwing myself into. It sure beats watching cricket.
In all honesty though, this is one of the biggest challenge I have faced at this time. For one to fight for life while they have lots to live for is one thing. For me, I have been fighting feelings of wanting to leave this earth while medics try their best to keep me here. My fight here is both to believe things will get better, and that the fight to stay alive will be worth it in the future. My will to live at this stage is coming more from the promises that God can heal, rather than what I feel I have in my future that is worth continuing the fight for. There must be a better way of writing that sentence, surely.
Posted on January 25th, 2010 by Cam.
Categories: Let's talk.
I feel today, after a significant weekend, that there is a greater hope than what I have been anticipating. If my hope is worth anything at all after this time, it is worth everything.
Posted on January 21st, 2010 by Cam.
Categories: Let's talk.
I had some good highlights today. A random, incidental, encouraging chat with a like-minded soul at a cafe, taking some motorbikes for test-rides, having dinner with family I love, going to hear wonderful musicians play music wonderfully, catching up with dear friends.
By all accounts, I should be loving everything, enjoying everything. But I still walked home stating to God “Father, I have to believe it will get better than this”. I don’t know what I am expecting anymore. My expectations of myself, others and life have not been realistic or helpful, so I don’t know where to place my expectations now. This is a pressure in itself.
Anyway, I am too tired for this tonight, and the meds have kicked in right on time. Best not write.
Posted on January 19th, 2010 by Cam.
Categories: Let's talk.
For the last month or so, I have been looking for a place to live over this year. It has caused quite a lot of torment actually, and I have spent a heck of a lot of time trying to sort it out.
A simple decision for some, it has been a very difficult decision for me as I have considered so many factors. I have been looking for a place that I can set up a bit of a studio and writing room, as well as having the option of sharing the place with someone to help out with repayments or rent.
The was a place I have had my eyes on for quite some time, an apartment in between two places I tend to hang out in, Leederville and the William St precinct. To buy it would have taken any hint of spare cash in case I needed it, but given me a nice place to live. Today I went into the agent’s office and said, “Alright, let’s do it, let’s write it up.”
“Are you sure?” said he.
“Nope!” sayeth I.
He then proceeded to talk me out of it, and I am most glad he did. I decided instead to rent my sister and brother-in-law’s place in the area that I love, smack in between Hyde Park, all the cafe’s and music venues I love, close to restaurants and my favourite chemist. All walking distance. Nice. So I am completely relieved, it is amazing how much a decision made can bring peace. I will sleep well tonight.
When one has been given a medical prognosis of 12 months (I ain’t subscribing to this, mind), getting into a mortgage seems a bit of a waste, although at the time it was a decision that promoted a thinking that I would be around for a lot longer. I can do that without a mortgage though.
So I did what any rational, level headed person would do who gained a fresh sense of financial freedom, went to the closest motorcycle shop, followed by the next closest music store. A few orders made (relax fam, not at the motorcycle shop), and I with the purchase of some music gear recently, I have purchased temporary happiness. Hey, I will take what I can get. Delayed gratification is often overrated, especially at this pointy end.
So if anyone is looking for a place to lay their head in the Perth area, feel free to let me know. I will be ruthless with my filtering process with potential housemates. If you can clean and cook though, you are encouraged to apply. Actually, congratulations, you’ve made it through the filter. You can pick up the keys tomorrow.
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