December 2016 update

Hi everyone, well it’s been about a month or so since I last wrote a post – certainly not as regular as I have been of most of the last 2 years or so (yes, it has been two years, in mid January).

I’ll break this post up into two main components. Firstly, for those who don’t want to read the whole thing but are interested in the nitty gritty on how the cancer I have is progressing and how I am managing it, and secondly, more about my thoughts and feelings around the whole process.

Up to now – first component

I was diagnosed with bowel cancer in July 2014, 2 ½ years ago. About six months later it was discovered that it had spread to the lungs. Very soon after diagnosis I underwent six weeks of radiation therapy to the bowel area to try and shrink the tumour enough to make surgery not so dramatic and invasive. This did work fairly well, although once the lung metastases were discovered surgery was put on the back burner because the lung tumours would kill me before the primary tumour would. It was thought that chemotherapy was the best way to tackle this part of the treatment. Hence, I had about 5 months of specific chemo. Again, it did the job of slowing it all down, but not eliminating the lung tumours. I was now officially pronounced incurable and any future treatment would be considered palliative (i.e. to make my life more comfortable, perhaps give me more time, and improve my quality of life).

As you can imagine it was mentally and emotionally very difficult to deal with, and stretched myself, M and our beautiful family to the max. We grieved a lot. I then embarked on probably a year without any more oncology interventions while my body recovered a bit from the radiation and chemo. This included a focus on the whole person – physical, mental, emotional, spiritual, and covered experimenting with many ‘alternative’ types of treatments such as herbs, supplements, medical and non medical cannabis, meditation, diet, massage/body work, counselling, energy work to harness the universal cosmic energy that flows through every living thing, exercise, and so on. The doctors were sceptical of this and there is not much evidence that many of these methods have been studied enough to determine their efficacy. Still, I wanted to give them a go; after all, the oncologists had basically no more to offer. Scans last week revealed that the tumours are increasing in size and number, and at this rate my time on this planet is definitely quite limited. Rats. I, and we, do a lot of grieving. If a person can cry themselves to health then I am a good candidate for it.

The oncologist, who is a lovely person, is very concerned about my health and wellbeing and suggested that there is still another chemo option available to me – not to cure me, but to slow the tumours down, set them back even, improve my pain levels, and generally help me feel better with what time I do have left.

M and I have been talking a lot about death and dying, and I am putting plans in place. For instance, I’m filling out an Advanced Care Directive that gives people information about what type of treatment I would choose if I lose the ability to choose for myself. We are also investigating funeral arrangements; it’s very possible these days to take control over you own funeral. Not only is it cheaper but may also help the grieving process for the family and provide me and loved ones with a more peaceful pathway towards death. We are doing these things not because I have given up hope, but because of my risk management strategy; we still hope and pray that I will get better, but if I don’t then I may as well be prepared, and help my family prepare.

I got a glimpse of this in the past week. Out of the blue I woke up in the night with severe sweating, shaking and temperature that went on for at least a couple of hours. I could barely lift my head off the pillow and found it very difficult to communicate. It improved gradually throughout the day. M called the local hospital (who have been really helpful) and they sent the community nurse to check on me. By the time she got here (only a couple of hours later), my temperature had come down quite a lot, I was able to talk, and I could get out of bed. I barely avoided a trip to hospital in an ambulance. I was monitored over the next few days. On the second night I again had an attack, but very much milder and shorter than the first night, and it was over in a half an hour or so. Phew. The third night, less again, but I’m still not right, I still get a bit shaky, my temperature can go up a bit, and I can get a bit wobbly. But I’m pretty much back to my new normal, which I describe as a fairly well person who has advanced cancer and all that is associated with that. By ‘well’ I mean that I don’t have any other sicknesses, just cancer. All vital signs are normal – blood pressure, sugar, etc. Oops, actually, I may be lying here because my iron levels are very low and depleted, so much so that I am having an iron infusion at the hospital tomorrow. I am told this should pick me up and help me feel a lot better.

So, in a nutshell, the new chemo regime starts in the second week of January, and it will be pretty full on, rather than gentle. I’ll be having quite a dose and then monitored to see how well or not well I tolerate it. I’ll fill you in more as time goes on.

I’ve been having a terrible time with constipation since the sickness episode of the last week, with more or less nothing moving through over the last 4 days or so. I’ve stopped eating solids at the moment and moved to fresh made juices (veggie and fruit) and broth made with veggies and bone broth powder. I was talking to the GP today about this and he is very concerned and suggests that perhaps it’s a sign that my rectum has completely closed up with the tumour, blocking exit of faecal matter. That is not good, and what it means that I could be in store for an operation to divert my intestine into a bag, called a stoma; it means that instead of going to the toilet normally, the poo goes straight into a plastic bag that I would wear strapped to my waist.

Of course, the thought of this is awful – surgery itself is terrible and this would be pretty invasive; having a bag to empty and clean sounds kind of demeaning and probably very limiting. However, I have talked to people who have had this operation and they have said that it’s not as bad as it seems, and in fact it can be a relief especially if you have been having awful bowel troubles for as long as I have.

This could happen sooner rather than later; in fact, he sent a referral to the surgeon to get the early part of the process going, perhaps avoiding emergency surgery in the middle of the night on Christmas eve or similar. I’ll keep you posted. All I know is I can’t keep going on the way it is going now, something needs to change, and I’d like that to be for the better. I’m really getting worn out by the sickness and finding it more difficult every day to maintain my equanimity.

I’ll move on now to the second component of this post, with some more rambling and raving.

Second component – Magic thinking

Human beings love magical thinking – just look at the popularity of religion the world over. And I have been prone to it I realise since I have been sick. For example, in trying to work out why I got cancer, why it chose me when I thought I was immune because of my diet and lifestyle, I developed a theory that goes something like this: I believed that cancer is part of an outside malevolent thinking and decisive being, looking for hosts to set up shop. We as live sentient beings are part of, and intrinsically interconnected with, the universal energy that flows everywhere, including through us, and this energy, if working properly, protects us from invasion of things like cancer as well as other sicknesses.

My cancer is in the bowel, which is part of the pelvis area. I hurt my pelvis area when I was a two year old and have had trouble with it basically most of my life – reduced flexibility, early onset arthritis in hips, prone to lower back problems and so on. I believe that after my early injury I held the muscles tight in that area and the whole pelvis area became ‘armoured’, using Wilhelm Reich’s terminology. This restricted the life enhancing energy flow through it, thus inviting the dark forces of death. I could also find plenty of support for my thinking, it has a lovely ring to it, and this system of thought is internally logical.

When the radiation and chemo failed to cure me and get rid of the cancer, I focused my efforts on energy work to bring back this energy to the area. I have done a lot of work over several years to achieve this and have had some good results. I believed that I would be able to turn back the cancer as my enlivened immune system moved it along. I have spent most of the last year giving this method of treatment quite a fair nudge. Well, it hasn’t worked. The cancer has grown, and I am worse than I was a year ago.

I’m now turning back to the oncologists to embark on more chemo, which they hope with shrink the tumour and buy me more time. I’m not throwing the energy principle out altogether, and I’ll keep bits of it going alongside the chemo, but boy oh boy has this challenged my perception of the sanity of my thinking.

I have put a lot of faith in other forms of healing such as diet, herbs, supplements, medical cannabis, meditation, body work, exercise, emotional healing and so on, even though there is very limited research evidence that any of these things work, either together or separately. I have also spent a lot of money on pursuing these. Well, have they worked? I still have cancer and it has got worse, so they haven’t turned it around, and there is no way of knowing if they have slowed it down and helped me live as long as I have. So I feel a bit shattered, that my paradigm has been proven very wrong, that my thinking up to now has not helped much, so I am letting go to a large extent of my dedication to all of these methods.

Another example of magic thinking is that I have been seeing an intrinsic link between my food garden and my cancer, physically, energetically and spiritually. It’s like I think that the garden is the outward manifestation of my inner life, my body. I ignored the garden for several years and focused mainly on working for the $, and it became overrun with weeds and vermin, at the same time that my body was becoming overrun with cancer. As I reclaim the garden I think of it as an allegory for reclaiming my body – when I pull out weeds, I am also removing some of the tumours. When I eat the food produced I am eating the life giving energy of the universe. However, the scans reveal that actually the cancer is spreading despite the fact that I am getting on top of the garden. How does my magic thinking feel about this? I don’t know, but I still reckon it’s a good idea to spend time in the garden and grow nourishing food.

So, what else is there left for me in life? How do I make some sense out of the fact that I am still alive, yet suffering daily, with no future relief in sight?

Quality of life

To answer these questions I need to explore what brings me life, energy, enthusiasm, love, joy, peace and hope, in the face of an increasingly closer, uncomfortable and painful death? Can anything offer some solace here when everything seems so dark and gloomy?

Family

Well, there are some things that stand out. For instance I have always been a strong family man, taking my role as husband and father as being of the utmost importance. So, I try to maintain these relationships, albeit in a reduced role. Still, I am surrounded by people who love me and want to see me and spend a bit of time with me, and even to help out if they are able. This cheers me up immensely and gives me strong reasons for living as long and as well as I can. To achieve this over the festive season we are spending plenty of time together and aim to do fun activities while together – let’s have fun and enjoy life.

Gardening

As you probably know if you’ve been reading this blog in the past, I do love and enjoy growing food, and I’m keeping this up as much as I can now, despite my lack of energy and the local water restrictions because of drought type weather.

Below you can see a collage that M made up of some of the produce we have going at the moment.

garden-collage
Garden collage

There is a mixture of fruit and veggies here, not all ready at the moment, but we get some food every day from the garden. I can hear thunder at the moment so some rain would be really appreciated because nothing makes them grow as well as the life giving rain. The birds and insects also like the food so there is a constant dance between us and them. I’m okay for them to have a bit, but I don’t want them to wreck everything otherwise what is the point? I could be more Zen about it I suppose and just let them have it all, but really I want us to be able to eat the fruit of our labours.

Food

Eating good, tasty, nourishing, fresh food is a joy to me, so I have relished this part of life as much as I can. It’s a bit disappointing at the moment that I can’t really eat any solids because of the constipation, but at least I can put some of our produce into the juices and broths, hence gaining nutritional benefit.

I have liked cooking and preparing food, but as I have been too sick to do much of this, now M does most of it. I occasionally do a bit when I can. I’m very lucky she has lovingly taken on this role to ensure that I am properly physically nourished. The most I contribute to this process is to do most of the washing up and occasionally a bit of shopping.

Over Christmas, as the family gets together to share many meals, we are making some contributions: M has made her famous (in my own mind) Christmas cake, which lasts well into January. We have also sourced and bought an organic, free range, local, naturally wood smoked, nitrate-free ham, and it is beautiful. Perhaps a bit salty, but I think that is to help preserve it in the absence of nitrate.

I have gone off the vegan and vegetarian diets because I just couldn’t stand them; I didn’t think they helped with reducing the cancer and I really lost my interest in food. My mantra now is to not eat too much, mainly eat fruit and veggies, ensure most food is real food that is unprocessed and fresh, keep the consumption of sugar as low as you can, and local is good. We are very lucky where we live because it is quite easy to find plenty of terrific food within these parameters that is also not way too expensive. It often is more expensive than junk, but that’s ok – I’m happy to pay for quality. When I worked in the building industry I was always more expensive than most other tradespeople, but offered quality work, and there was no shortage of customers willing to pay fairly for the extra effort that goes into proving a quality service.

Time for Christmas

It’s Christmas time again and I probably won’t sign in again till the new year. Thanks for all your support, I really do appreciate it. All the best to you and I hope your health is terrific. Phil

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Phil

Everyone tells you to stay positive. For me it means positive actions that help me feel as though I am doing some good, having some influence over the cancer growing in me.

7 thoughts on “December 2016 update”

  1. I love reading your updates, Phil. For those of us who have had cancer, I think we all grapple with why it happened to us. Me, I think there’s usually no rhyme or reason to it. It just happens. It’s how we deal with it that makes all the difference. I don’t think there’s anything wrong with trying alternative types of treatment, and I do believe that staying positive is one of the best things we can do for ourselves. Thank you so much for sharing your journey with us. Have a wonderful Christmas and New Year!

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    1. Ta mate. Yes, we had a great Chrissy. and that rain hasn’t arrived yet. A bit of a heat wave this last week or two, although probably exactly what you are used to most of the time. We are a bit heat sensitive down here, us southerners. Cheers

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  2. I’d say go for the surgery and don’t worry about the bag. I wore one and I was very happy with it. I did fear breaking in tears when I saw it after the surgery, but that never happened. I showed it off instead. The bag gave me good quality of life that I don’t have now after radiation messed my tummy up. I like your gardening. It’s part of what I call “richness of the soul”, the only kind that we take with us. I hope your upcoming treatments give you a better quality of life and a better expectation in terms of time.

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    1. Thanks untrained warrior for you kind words of support. I’ve had a stent put in since my last post and that is working fine. A bag still may be required in the future, and I am now not so afraid of it. All the best.

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  3. Good luck with the coming chemo sessions Phil. I haven’t been able to communicate with you since I saw you last. So it’s great to follow your thoughts and feelings in this blog. I’m home alone (Christmas was great, but the family, including Kim, have left for Sydney), and I’ve lost my phone, so there’s not even a chance of me communicating in any other way. But I feel as though I have just had a long and soul searching conversation with you after reading your last two blogs. All the best mate, Al

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