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.

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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

Update

Hi everyone, it’s been almost a couple of months since I last wrote on this blog, so thanks for your patience and also to the messages of support I have received. The main reason I haven’t done the writing is that it has been a torrid month healthwise – I have not been well at all, and of course this is related to the cancer I have. I’ve been finding out recently that many of these health issues are directly a result of unknowingly being constipated; being blocked up chronically will make anybody feel sick – nausea, dizziness, fatigue, absent minded, muddled thinking, general malaise and lack of interest in life. I’ve been feeling all of these. The good thing is that, thanks to the wonderful palliative care team at Bellingen hospital I am on the road to recovery.

Constipation – a counter intuitive state

We all know that being constipated means you can’t go to the toilet to have a poo, you are clogged up and don’t have bowel movements. The Macquarie Dictionary defines constipation as: a condition of the bowels marked by defective or difficult evacuation. I haven’t been displaying these symptoms at all; in fact, I’ve thought that I’ve been the opposite, with a bit of diarrhoea more than anything – runny bowel movements and occasional incontinence. It came as a big surprise to me that these can also be symptoms of constipation – the runniness is caused by the stools inside you blocking the bowel, and liquid forcing its way past this and leaking out. What seems like it could be diarrhoea is in fact constipation.

I’d gotten so crook that I suggested to the doctor that I was ready to have a colostomy bag installed to help me over this. I just couldn’t stand it any more; this was before I know what the problem was. Well, now that this is on the way to being solved, I’m feeling relatively well again. Whooo hooo, time for celebration. It’s amazing how such basic things can become such a cause for joy in life. Learn to appreciate the small things, they are the fabric of a good life. An interesting side fact is that once we had got my bowels moving properly, I lost 3 kilos in 3 days, purely made up of the impacted poo coming out. Wow, wonders never cease! I’m now at my lowest weight in 45 years, a return to what I was when I was about 18 years old. Forever young I say.

It seems like for me the constipation is caused by at least 3 factors: the tumour is partially blocking the passage/rectum, the pain killers cause it, and the radiation treatment damaged the sensitive area and the nerves that make it work properly. My high fruit and veggie diet of mainly plant based foods is not enough to counteract these powerful influences, and I may have to take anti-constipation medicines as a semi-permanent preventative measure.

Ok, so let’s move on. Below, if you keep reading, you find a collection of bits and pieces that I’ve been writing over the last six weeks or so, trying to get a new post up and running. It’s not necessarily a full or coherent story, but it does capture some of the things I’ve been thinking and going through.

Food, growing and cooking

veggie-patch
Phil’s veggie patch

Food is important to me, and probably to all of us. When constipated I had used food clogging up my whole system – x-rays revealed I was impacted by built up poo almost back up the stomach. The next stage could be vomiting out poo, and doesn’t this sound gross. Luckily I caught it before it came to this.

The photo above shows that I haven’t been totally idle and bed ridden this last couple of months, but have been steadily getting the garden under control, about one hour’s work a day. The veggies are going great and we eat a few things each day from our organic garden. It’s healthy, great fun, and gives me some much needed exercise.

phil-making-pizza
Phil preparing pizza

Marilyn has been doing most of the cooking while I have been crook. However, I was starting to feel well enough to have some ideas, so this is me preparing the ingredients for a pizza.

pizza
Pizza already half eaten

We had already eaten half the pizza when I remembered to take a photo – we got two dinners out of it, great value, and it was really delicious. You’ll see some fresh picked jaboticabas in the silver bowl in the background. I’ll give you a basic recipe:

Base:

1 cup flour (I used stone ground organic wholemeal, but any will work), water, 1 teaspoon of yeast: combine ingredients, make into dough, knead for about 5 minutes, leave to rise and prove for a while (half an hour at least), then it is ready to knead again and roll out for the pizza base.

Ingredients
Tiny bit of tomato paste

Pre-roast some veggies – eggplant, fennel, parsnip

Cut up some local organic nitrate free bacon, fish and anchovies (a half and half pizza, with bacon on one half and seafood on the other), capsicum, olives, celery, fetta cheese, grated cheddar cheese, a few mushrooms, and any other veggies you might think will work that you have at home.

Cook in a hot oven for about 30 mins or till cooked to your liking.

Yum.

 

Quality vs Quantity of life

Over the last few weeks I have been pondering deeply the conundrum of quality vs quantity of life and how it relates to me having cancer and the treatment options available to me. Because I have metastases in the lungs I am considered terminal by the medicos, and have been given a use by date of perhaps one year from now, firstly if I am lucky, secondly if the cancer keeps growing fairly slowly, and thirdly if I don’t have any more of their treatment. The only treatment available to me is chemotherapy, and it may prolong my life 6 months or so, or it may not, depending how I respond to it. It probably will make me quite sick during it and for quite a while after it has finished. The whole process of chemo is awful, requiring surgery to insert a port a cath or at the very least a pick line so the poisonous infusion can actually be dripped into my body, into my veins.

It’s been about a year or so since I finished chemo, and I’m coming quite good now, with energy levels increasing, more interest in and enjoyment of life, and generally more get up and go. It’s been a long road to get here, but I am here and am thankful for it. Many people with cancer I have known have not lasted this long; so, in this regard I have been lucky.

So, really, I’m not sure what to do. I’ve taken about 2 weeks off all the therapies I have been using, such as cannabis, herbs, supplements, magnetism, blood electrification, oxygen therapy, vitamins and so on. I’m just a bit sick of taking this handful of pills every day, usually at least twice or thrice per day. I am also sick of the effects the cannabis has on me; I call it my ‘chemo cannabis’. These effects are nowhere near as drastic as the doctors’ chemo, but it does make me tired and lethargic, as well as giving me the munchies (some would say this isn’t too bad as I have lost a lot of weight but it can encourage me to eat more of the things I shouldn’t eat so much of). I’m also off all these supplements while I get the toileting under control in case some of them contribute to the awful constipation. I’ll get back into them slowly, monitoring there effects.

I saw the chemo doctor the other day, and we both agree that a scan sometime soon would be a good idea. I think I’ll have one in a month or so, to give myself a month to go back full on to my cancer busting regime, and see if the scans demonstrate that this has been helpful. He’d like me to have the scans sooner, but what’s a couple of weeks. I think I’ll do it my way; he’s pretty keen on me starting on chemo fairly quickly, I’m not that convinced. My desire is to try and avoid having more chemo, as I think it could be very counter productive on many levels.

If I am going to die from this cancer, I’d rather go out strong and on a high, rather than weak and sick. Over the last several months I am regaining some of my strength and fitness and also some of my zest for life. I feel like I am getting better in many ways (although the pain is not getting better, but is controlled by drugs). If I go onto a chemo regime, I will quickly get worse, sicker, weaker and more depressed, and I don’t know if I will live long enough after it to get my health and fitness back.

Anyway, what else it going on in life?

 

Cancer Conference

M and I went to a cancer conference in Sydney a couple of weeks ago; I was accepted to present an oral session, describing my research on patient centred care. Basically I have been investigating how the patient/doctor relationship impacts on the patient’s feelings of anxiety and depression in cancer. Not surprisingly, and in a nutshell, it seems that if the doctor is kind, thoughtful and collaborative, the patient is happier, more positive, and enjoys life better. Hmmm, gee did it take a research project to work this out?

Anyway, it is by research that we can get listened to.

I wrote a skit or role play to perform during this session, and M played the doctor and I played the patient. We did two different scenarios to demonstrate some examples of the emotional aspects of consulting with doctors and the power they have over our wellbeing. I’m pasting the dialogue of the play below:

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M and P on stage at cancer conference, doing role play

Patient centred care, a psychosocial approach

Act 1. Are you anxious?

Cast: doctor, patient.

Scene: the scene for both acts is in the doctor’s waiting room and consulting room

Dr: appears, calls patient’s name in a raised voice, looking around: Mr Wadick

Patient: (puts hand in air to acknowledge, and moves towards the doctor. When close, says) Good morning doctor, how are you today? Beautiful morning isn’t it.

Dr: (barely looks at patient, just uses hand to motion into the seat. Says nothing, no response, looking stone faced).

Both sit down

Dr: (reviews something on the computer screen which is facing away from the patient, says nothing for a while. Patient moves uneasily on chair. Finally, doctor says:) These scans don’t look good.

Patient: What do you mean?

Doctor: Well, the metastases in the lungs mean you are terminal.

Patient: (again, unsure of meaning) Can you please explain that a bit more?

Doctor: You probably have between 6 months and 2 years to live.

Patient: (gulp), What’s my chance of reaching the 5 year survival mark?

Doctor: (shakes her head). No, none.

Patient: Is there anything I can do that will help extend this?

Doctor: No, nothing you can do to help. I’d get my affairs in order if I were you.

Doctor begins to stand up to symbolise the appointment is over. Patient is a bit shaky and in shock, slowly moves to his feet, and feebly says:

Patient: Thank you. Should I make another appointment?

Doctor: Maybe in another month or so.

Patient trudges out, obviously upset.

 

 

Act 2. Might this help?

Cast: doctor, patient

Dr appears and calls patient’s name, looking around:

Dr: Phil Wadick?

Patient: (puts hand in air and moves towards doctor, when he gets close, the doctor says)

Dr: Good morning and welcome. How are you this morning?

Patient: Not too bad thanks, it’s a nice day outside.

Dr: Yes, I can see out the window, but I won’t get out much to enjoy it. (Motions for the patient to have a seat). Please sit down here if you like.

Patient: Ta.

Dr: (looking at computer, trying to turn the screen so the patient can also see it). Can you see there (pointing), they are tumours growing in the lungs.

Patient: yeah, I can see them. That doesn’t look good, does it?

Dr: No, it’s not very good. In fact, from a statistical point of view, most people with these types of metastases don’t live longer than a few years (said in a kind, empathic way, looking directly into the eyes of the patient).

Patient: (Gulp). Oh, dear, you mean that I have maybe up to a few years left?

Dr: Statistically, yes. But there’s a lot we don’t know about cancer, and some people, although not many, do survive against these odds and we are not sure why.

Patient: So, is there anything I can do to help?

Dr: There could be. Do some research for yourself. In Western Australia they have shown recently that targeted exercise can increase survival in people with bowel cancer by up to 30%. Your immune system is your best friend here, so do things that improve the way it works. For example, pay attention to what you eat, keep stress to a minimum, enjoy life.

Patient: Thanks doctor. I’ll look into that and see how I go.

Dr: Ok, all the best. Come back in a month or so and let me know how you are getting on.

Patient leaves with a spring in his step and smile on his face.

Patient: Ok, well I’m going to try and beat this thing. Wish me luck will you.

Comments

We got a lot of great comments after this performance and plenty of claps of applause. Unfortunately I didn’t win the best presentation award, but it went down really well. It may lead to more, time will tell. The presentation has also helped with my networking and this is still going on, as I explore some of the people I met during the conference as a direct result of the presentation.

Hope, despair, joy, depression, love and life

Having cancer sure has put me on a rough roller coaster ride, the ride of my life perhaps, oscillating between all sorts of feelings, thoughts and experiences. I didn’t ask to partake, but I have been strongly invited, and I can’t ignore it.

If you’ve been following this blog you’ll know that I like to take an entrepreneurial role in managing my health, I like to do my own research, do my own thinking and experimenting; of course, a large part of this information comes from the people who work in the medical system – oncologists, GPs, nurses, and the whole range of personnel in this field. Less easy to find is information that is not always recognised by the medical establishment, but that has some interesting things to say, interesting ideas worth pursuing. It is probably within this realm that I find modalities I can explore that feel congruent to me, to my outlook and paradigm, to my epistemology and ontology (that is, what I count as true knowledge, and what meaning I see in the world).

And I have just about tried everything you can think of, almost anything that people have suggested to me I’ve at least had a bit of a look, and my life (and of course M’s) at the moment revolves around these on a daily basis.

phil-on-bush-walk
Phil going for bush walk

A bit of a bush walk on our daughter and son in law’s land, helps with peace of mind and a sense of belonging in the world.

South West Rocks and family holiday

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Family fun photo at South West Rocks

We spent a lovely 4 days together in a great family house down at South West Rocks, right near the beach. This was the funny face photo – a great one of all the immediate family having fun and enjoying our time together.

swr-phil-on-rock-in-sun
Phil on rocks at South West Rocks, Little Bay

More at South West Rocks, enjoying the high energy of the beach. Now for a deep thought. During our trip here was the first time I really experienced the really bad effects of constipation without realising what was going on. During this photo I just knew I felt really sick, really bad; in fact, I remember quite clearly thinking that now would be a good time to die. I am surrounded by my loving and lovely family, it is a magic day at the beach, I am energised by the cosmic energy passing through me, joining me, the earth and the universe. I felt so sick I thought that I am happy to die now. I knew that the family wouldn’t be happy, but at least I would be out of my misery, and I offered myself up. Well, I didn’t die, I found out the cause, and now am glad to be still alive.

Thanks to Marilyn

Through all this Marilyn has been terrific and I want to publicly acknowledge her love for me and the efforts she continuously puts in to help me survive well. I couldn’t do it without her and really feel for people who are doing this on their own. So, thanks a million, I don’t know if I’ll ever be able to repay you. It must be hard for you my dear, seeing me like this; you also need to live a fulfilling life, and looking after me is not always a barrel of laughs, but full of ups and downs, watching me suffer through this sickness.

Funding update

As usual I’m providing below an update on how I have been spending the money raised earlier in the year through the funding organised by our children.

# Item Amount $ Comment
1 Carried forward 12, 294 From last update – money spent
2 Batteries 22 electric blood purifier
3 book 34 Paleovedic
4 Essiac 50 American Indian herbs, said to be good for cancer
5 Holiday Inn 95 Brekkies for training
6 Air bnb 322 Cancer conference, M and myself
7 Medicines 10 Bello pharmacy
8 Flights, cancer conference 587 M and myself to Sydney
9 Food, taxis, 104 Cancer conference Sydney
10 Medicines 85
11 CBD oil 762 medical cannabis
12 Essiac 346
13 Massage, spiritual healing 210 Purdy and Anne
14 Subtotal this table 2627
15 Total spent so far 14,921 Of the $23,000 raised. Approx $8,079 left

As you can see from this table, the funding is stretching well, as long as we don’t have too many large expenses. For example, we know people who spent over $100,000 going to Germany for 3 months of treatment. We cannot even consider that. We could also spend about $20,000 to go to the Gold Coast for 3 months of treatment, although mostly it is unproven in effectiveness.

Basically, my approach at the moment is to live a clean, simple, happy, healthy and relaxed life where I am being true to who I am, to myself, and to others around me. I want the energy of the universe to flow unimpeded through me, and I believe this gives me the best chance to survive by turning this thing around. To achieve this I need to reflect deeply on my being, on how I am and how I have been in this world. This takes time and effort and I need the support of those around me. Mostly this is working well.

That will do for the moment, thanks everyone for you interest, and I’ll catch up with you another time. I haven’t been very good lately at responding to social invitations or social occasions, I’m just calling all my energies close to myself and using them strategically to the best of my ability.

I send you all my love, Phil.

 

 

 

 

 

 

The Wisdom to know what to do and the courage to do it

I have taken on, taken to, and adapted this age old saying for my own benefit; a large part of the reason for going to Melbourne was to get some more/new opinions regarding possible ways to treat the cancer still invading me. I/we went to three main appointments with three different styles of practitioner, all cancer specialists in their own ways. I was hoping to increase my knowledge of what I am up against, equip me with some knowledge, skills and strategies to help me beat it, and provide motivation for my courage to act, which I feel lately is sometimes sorely lacking. I think I get a bit sorry for myself, get sick of being ‘strong’, and want to have a break from it for a while; I want to feel weak, or I want to give into my addictions, eat that extra ice cream or sleep in a bit longer. I am looking for courage, and I’m hoping that it may be fuelled by knowledge. If you have known me long you will probably have noticed my thirst for knowledge. With the right info I feel as though I have a chance of making the best decisions, and having the courage to follow them through.

For example, I sometimes think that perhaps I should be doing such and such, and then I don’t do it – I can’t be bothered or it is too hard, or, I suppose the most undermining of them all, I don’t actually believe in this idea, I’m just clutching at straws. There have been many such dead ends and U-turns I’ve been down since having cancer, and I’m not always sure or clear that I am making the right decision, no matter what I decide. In the end, I often will give a new idea a bit of a try to see how it’s working for me, then evaluate it and either persevere and integrate it into my healing regime, or leave it to the side.

I’ll now provide you with a summary of how each appointment in Melbourne went; this is more for my benefit than yours, as writing about this may help me figure out which way or ways to go, which path or paths to follow. I almost said which torturous path to follow, as if I am beginning to feel like I am being tortured and everything I do to make myself better is a little bit like more self inflicted pain. I’m starting to feel as though the least painful approach may be best.

Firstly, however, a non cancer paragraph. When in Melbourne we like to do some cultural things that only big cities offer us country folk, so what better place to visit than the National Gallery of Victoria, to view the spectacle of the Degas exhibition. I thought, wow, this guy pumped out the work. There must have been hundreds of paintings, drawings, sculptures; you name it, he dabbled in it. An astounding and outstanding body of work. Below is an example of one of his paintings of ballerinas.

Degas exhibition, National Gallery of Victoria
Degas exhibition, National Gallery of Victoria

We also love the access a big city provides to the big world of taste and good food. Our whole family loves Japanese food, so here is a photo of one of the dishes:

Japanese food in Melbourne
Japanese food in Melbourne

Peter MacCallum Cancer Centre, Melbourne, Victoria

Phil at Peter Mac in Melbourne
Phil at Peter Mac in Melbourne

We had an hour long appointment with a medical oncologist (chemo doctor), Dr Michael Jefford, at the Peter Mac centre, touted as Australia’s best cancer centre; in fact, the new building has just been opened amid much fanfare by the vice president of America, so pretty big. I was hoping that these people would have some very up to date information that was from cutting edge research around the world. However, I was sorely disappointed in this aspect, as their storyline was exactly the same as our local oncologist. This is terrific in one way as it means our doctors in the small town where I live are up to speed with the best – very comforting. As I quizzed him more, I found out that in fact the drugs they want to use on me are at least 15 years old, and survival rates using these have not improved in all that time, despite the myriad of research being conducted in the field. When I inquired about other treatments, and in particular other slightly different treatments being practised in different parts of the world (e.g. hyperthermia and oxygen therapy in Germany), I was told that these are ineffective. This doctor assured us that he had had several patients who had followed this path, gone overseas and tried different techniques, to great personal and financial expense, with no real improvement in their prognosis.

Basically, the oncologists offer me more chemo with no chance of a cure but plenty of pain and sickness. I would need another port a cath surgically implanted in my chest through which to receive the poison. The goal is to kill the cancer before it kills the person. They offer me the chance that the chemo may extend my life and may even improve my quality of life, or it may not. If I was a gambling man, I’d say these odds are not that terrific.

National Institute of Integrative Medicine (NIIM), Hawthorn, Melbourne

NIIM offers complementary treatments for cancer as well as other integrative medical approaches to health and wellbeing. We saw Dr Valerie Cole, a medical doctor who is also a cancer specialist, to get her opinions as to what may be a useful way forward. This doctor gave us confidence that there are many modalities that we can still try, albeit if we have the money. Even so, she repeated the prognosis of the oncologists, which means there is no promise that if I followed the full on and rigorous protocol she suggested that I will get well again.

She did not discourage me from undergoing chemo, and was in fact reasonably in favour of it, as her methods are said to work in synergy with the chemo. Her methods principally included hyperthermia (heating the whole body or specific parts of the body a couple of degrees, imitating a high temperature), hyperbaric oxygen therapy, and vitamin C venous infusions, and are complemented by strict attention to diet, psychological counselling, energy work and various other approaches to strengthening the immune system and reducing stress.

It felt terrific at first that someone in authority was taking charge of my health and outlining a comprehensive process for me to follow. However, there were just a couple of niggling thoughts popping into our heads. Firstly was the fact that this treatment may not help me beat the cancer and there was no research evidence to support their efficacy. Secondly, the cost of the treatment and difficulty of accessing from where we live is very high. It would cost a minimum of $20,000, although she wouldn’t give a quote, and I haven’t pursued it further as yet, and we would have to move house for at least a few months to have the treatment, probably at the Gold Coast in Queensland, about a 4 or 5 hour drive from here. If the evidence was promising, we wouldn’t hesitate, but there doesn’t seem to be much evidence. I have been able to find some, and the fact that Australians go to Germany to receive these treatments does suggest there may be some effectiveness to be had from them. However, I’m a bit hesitant and unsure. It also means getting the port a cath inserted so the vitamin C can be infused, and if you remember from blogs of a year or so ago, I did not have a good experience with the port previously, and am very hesitant about going down this path again,. It fills me with dread.

Dr Ruth Gawler, East Melbourne

Ruth is a GP with a specialised interest in Mind-Body Medicine and Psychology, and is experienced with cancer. She was the third doctor that I was seeing in Melbourne, looking for a range of points of view and perceived options for treatment. Ruth encouraged me to get in close contact with how I was feeling about having cancer and the treatment options I was exploring, listening intently to those processes which I currently do. She did not seem to push any particular approach onto me except for including plenty of meditation in my daily rituals, having plenty of body work and spiritual healing, but she did stimulate my thinking as to what I leaned towards, what was congruent with me as a thinking, feeling person.

It was during this discussion that I realised that I didn’t want to have more chemo and all the disgusting and invasive techniques that go with it; I don’t want to leave home and spend up big on not only the chemo but other unproven techniques. I like the approach I have been developing over the last 2 years, based on my own in depth research and trial and error. So, for the moment, I have decided to tighten up what I want to do and do more of it. It really is important to get the dosage right or the technique may be of no benefit. She suggested that I should be thinking of it as my full time job during which time I give my best and sustained efforts towards getting well again. This is where the “courage to do it” from the above statement comes in. In my deep meditative state I seem to know what I should do, but I often don’t do it.

I had an interesting conversation with Ruth; I said something like: “If I’m only going to live for a year or so, I will do such and such”. She pulled me up on the language I was using, wondering if I could be creating a self fulfilling prophecy with the constant repetition of this mantra. She suggested that I remove this type of statement from my vocabulary, which I am doing. I like that way of thinking.

When talking it over with M, however, I realised that in fact I do a lot of things to get better. I’ll give a little snapshot and summary below:

# Item

 

Time Comment
1. strap on electric pulser approx. 4.30 till 7.30am to clean the blood, part of the Bob Beck protocol
2. lie in sun and meditate, still in bed approx. 7 till 8am deep thinking and feeling to connect with my healing energies
3. lemon juice in water 8am our organic lemons and filtered water
4. brekky 9am porridge made from organic oats, apple and goji berries, with a splash of milk and fresh ground flax seeds (omega 3’s)
5. morning supplements after brekky medical cannabis, theracurmin, probiotic, hydrogen peroxide (drops in water), iron, vitamin D, Essiac (north American Indian herbs), legalon (liver)
6. morning tea, 1 cup black coffee, 6 brazil nuts, 2 or 4 prunes about 10.30am Coffee because I like it; brazil nuts for selenium and prunes as anti constipation (the pain killers tend to bind me up).
7. hang energy blankets in sun late morning charge them up if it is a sunny day, ready for an afternoon session of energy work
8. physical activity and exercise for a few hours mid morn till early arvo work around the house, maintenance, gardening, shopping etc. I’m trying to increase the intensity to make it more challenging.
9. lunch approx. 1pm perhaps some home made organic spelt bread with a slice of cheese, salad and turmeric/flaxseed oil spread. Or soup etc. Or not. Below is a photo of today’s lunch, consisting of home made bread, avocado, pepitas, sunflower seeds, left over sausage, fried egg with melted cheese, onions, turmeric, our home grown tomatoes, lettuce and carrot, and organic beetroot, of course with a sauce of a mixture of turmeric powder mixed with flaxseed oil. Good.
10. turmeric and ginger tea after lunch fresh sliced turmeric and ginger infused with boiling water – anti inflammatory and anti tumour.
11. Get ready for arvo meditation and healing session Around 2pm For example, any one or combination of following: heat wheat bags in oven to use on tumours, put on electric blanket in winter to heat bed for session, take some cannabis tincture in drops or smoke some in vaporiser (for topical application to lung tumours), have a long hot bath.
12. Conduct afternoon healing session from about 3 till 6pm or so It can involve a number of modalities as per last item, and can last 2-3 hours.
13. Dinner around 7pm M does it mostly but we both muck in at times. Plenty of veggies, but not averse to fish, a bit of chicken, occasional red meat, some home made low sugar but yummy desert. You’ll see a picture at the end of this section in this post
14. Magnetic pulser after dinner for 1hr apply magnetic pulser to tumours, as per Bob Beck protocol. Approved by FDA for use against tumours.
15. Nightly herbs before bed medical cannabis, legalon, colloidal silver (I make my own).

 

Lunch at home
Lunch at home

I intend to arc up some things, for example, see the spiritual healer who lives close by more often, take advantage of some offers made to me by health practitioners and consult them for their opinions. Interestingly, I think I’ve got to the point that I can hear someone’s opinion about what they think I should do, give it proper and dispassionate evaluation, and either take it on and integrate it, or reject it as not suitable. I used to feel much more pressured to ‘do what I was told’ by these usually very experienced and competent people. I treat this as progress.

So when you look at it, that’s a fair bit. It’s hard to fit much else in, really. M is a great help as she often works as the gate keeper, making sure that I am not disturbed if busy doing these healing activities. She will answer the phone or door (or not) and vet incoming people.

Even the exercise I get is designed to help beat the cancer. One reason that can make it hard to fit all this in neatly and every day is the unpredictable nature of life. For example, people may drop in, I have appointments or other commitments, shopping, I have friendships to maintain, family to love and be involved with, and all those things that make life worth living as a full human being. And, by the way, these things are also healing as it seems to be that longevity is proportional to how well one is connected socially, to that feeling of belonging and contribution that comes with being part of a community.

For a couple of months after returning from the Gawler retreat we did 2 half hour meditation sessions per day, but haven’t really done any for the last month or so, for a few reasons. Firstly, I haven’t been real well and the meditation hasn’t really fitted in with my times for doing things, and secondly it’s been so cold that I haven’t wanted to get out of bed in the morning. Actually, it’s not only the cold that keeps me snug and warm – my nights aren’t real good, having to get up every 1 ½ or 2 hours to go to the toilet (bowel, not urine). My bowel movements have continued to be dysfunctional, even to this day. Getting up so often, then taking time to get back to sleep, really wears me down; it’s hard for me to get into that deep sleeping place that is so important to us. So, even though I might be in bed from, say, 9pm till almost 8am, I’m not getting much more than 8 hours of broken sleep. No wonder I need sleep in the afternoon as well.

desert at home
desert at home

Funding update

There have been a few more expenses since last time, so I’ll give you a bit of an update. These costs are for herbs, supplements and our trip to Melbourne which includes costs of doctors’ appointments, travel, food and so on. Whew, we are so lucky that our family and friends raised this money. It is so valuable to us.

# Item Amount $ Comment
1 Carried forward 10,316 From last update – money spent
2 Flights to Melbourne 498 Both of us, return air fares
3 National Institute of Integrative Medicine 350 For a one hour doctor’s appointment with Dr Valerie Cole
4 Essiac 300 American Indian herbs, said to be good for cancer
5 Theracurmin 225 on special for bulk buy, triple strength (remember, adequate dosage is VIP)
6 Ruth Gawler 205 One hour appointment and book
7 Transport/cabs Melbourne 100 Luckily our daughter and son in law drove us most places. Thanks a million.
8 Food, Melbourne 200 We have to eat no matter where we are. Hard to get good clean and organic food when travelling in unknown places. Again, Ariel and Andrew were terrific with food. Ta muchly again. Deeply indebted.
9 Local doctor and medications 100 especially pain relief
10 Subtotal this table 1978
11 Total spent so far 12,294 Of the $23,000 raised. Approx $10.7K left

 

I must also mention how generous people have been. For example, M’s sister and hubby donated 4 nights’ accommodation in Melbourne to help offset our costs. Thanks a million you guys.

Ok, that’s it for now. See you next time. Phil

 

 

 

 

Coming out of the dark hole

Tamarillos with lemons in background
Tamarillos with lemons in background

Tamarillos growing in the garden, much loved by all the family, especially the children. High in vitamin C and grow well in this climate. Lemons in the background – a fantastic crop this season.

You may have gathered from my last post that I was a bit down in the dumps about having cancer and the fact that it definitely seems to be getting worse, despite all that I do. It is very powerful and perhaps I have underestimated its strength and overestimated my ability to knock it out. Sometimes I am a bit over confident in my abilities, based on my optimistic outlook on life.

Anyway, I feel a bit emotionally better and stronger now as I write this; it is not time to give up yet, although it is time to begin the process of ‘getting my affairs in order’ – that is, identifying the things I am more or less responsible for in our family and making sure there is some kind of smooth handover to other people if there comes a time when I am no longer able to do these things. Perhaps I can eliminate some of these things and replace them with easier methods etc, although this is a bit hard to figure out when it comes to things like, say, fixing things that are broken around the house. One example is that I have been compiling a list of all my passwords and user names for the sites I use, such as banking or bill paying, so that the transition to another person may be a bit smoother. Another example is that I have always sharpened the kitchen knives, using a stone and steel; it’s a slow process and for me a bit hit and miss, but it keeps the knives reasonable. Recently, after trying Jai’s ‘knife sharpener’ (a specific device to make it easy), I’ve bought a simple one and M can easily use it. You see, I’m not indispensable.

Please read on for some more musings from M. The feedback from readers of this post have been positive to see how it is for her as my support person, and want a close approximation to the truth rather than a beautiful air brushed glossy version.

M’s Musings 3

Of course it is a relief for me to see P coming out of the black hole. We both emerge, for I go into one also, and look around and see much to be grateful for. The human Spirit is seeking Life. Wants to be alive and engaged in Life.

In a situation such as we are experiencing, in a sense our world shrinks. We do not go very far from home, generally. We spend more time together, at home, and engaging with our close friends and family. Things that were so important…what were they again? Dreams we had, plans, things we took for granted. So much has changed. Some losses have been, or are still being, grieved over; some seem to have slipped away almost unnoticed.

And then there is the New, that which fills the spaces left by what has been lost. A new way of seeing. A new gratitude for the everyday. The sacredness of the ordinary, everyday. The signs of flowering, a baby magpie singing in the mulberry tree, a sunrise, the ocean. A sweet, smiling face. We breathe all of these in, deeply.

So yes, our lives have shrunk, from one perspective, and yet become immeasurable and enriched from another. We live in the same house we have lived in for most of the past 28 years, the same street, with some of the same neighbours. But sometimes, it seems, we are also on another planet! What goes on in here, in our world, and what goes on ‘out there’ seem so far removed at times. The sort of conversations we are being invited, required even, by circumstances, to have, are confronting. As P so eloquently put it recently, ‘we talk about some heavy shit’!

It seems unreal, surreal at times.

Then we do what must be done. Do the shopping, cooking, washing up. Carry water, chop wood.

Maybe none of this is so different from any life. Maybe it is simply more condensed, concentrated. And still it feels that now some things can’t be put off. There aren’t so many distractions. This is it. Watching, witnessing my partner suffering, struggling, facing challenges with courage and determination, is a very deeply moving experience. It hurts, it calls me to step up, inspires me, and at times it makes me cranky and impatient, and it brings up my fears.

And we laugh. P has always been a joker and still is. Sometimes a bit on the dark side.

Our relationship is in a process of profound change and growth.

I am learning about Love. I will write more on this next time.

Positive thinking and positive actions

The down in the dumps, or depression, that I was feeling was a mental and emotional thing – nothing much had changed physically, but knowing that the cancer was surging ahead despite my best efforts, really knocked me around and I fell into a heap. I lost inspiration and motivation; I still wanted to get better but couldn’t understand how this could happen, and lost sight of a possible way forward. In this mental condition I could not muster much effort at all to put into getting well again. I stopped taking all the supplements for a few weeks, and only kept up the pain killers because of the increasing pain. Sometimes I would fight this but I would be worse off from the pain. I was feeling a bit sorry for myself, and upset that I was on the downhill slide.

Well, time does make a difference, and I am mentally and emotionally on a road to recovery, strength and resilience. Hence, in this blog I’ll talk about some other aspects of life. First, tho’, a rave about positive thinking, one of my favourites to pick on. I have said in the past that positive thinking was no good on its own, as it may be counterproductive in that it makes you think things are getting better so you don’t do anything to make sure this happens. It’s more or less leaving things to chance but believing they are going to turn out all right in the end. Positive thinking needs to be turned into positive action for it to have much real physical affect, although I say this with caution, because positive thinking alone can very well improve a person’s quality of life by helping them put a positive spin on things and being optimistic; these aspects are great in themselves and are very healing.

I guess what I am saying is that taking it further and complementing positive thoughts with positive actions may help to achieve even better outcomes. For example, I may be feeling good about my prospects for healing, despite the gloomy prognosis – for some reason I just believe things will be fine. If I combine this with positive actions, I may research what practical steps I can take to give me a better chance for survival. If I find evidence for some of these I may decide to put them into practice; in the case of bowel cancer there is a fair bit of evidence to suggest that exercise improves the mortality and morbidity outcomes of people with bowel cancer. If I am in the right frame of mind I will use this information to ensure I increase my exercise and activity levels to the degree necessary to make the difference between getting well and not getting well. It would be hard for me to take this action if I didn’t have a positive and optimistic mind set. So, I’m trying to walk more and do more jobs around the house, increasing my activity level to around 4 hours per day, with little rests and sleep in between if need be.

Funnily enough what helps me keep focused on this is a ‘fitbit’ type of device worn on the wrist that measures footsteps, kilometres walked, very active exercise undertaken, steps climbed, heart rate, calories burned, and a host of other things. Again, thanks to Jai for the loan of it and I am enjoying it immensely. There was a saying in the field of occupational health and safety, that what gets measured gets attention. Now that I am measuring some aspects of my physical activity regime, I am paying more attention to it and trying to improve it; this gives me a practical way rather than just always ‘wanting’ to improve, without actually knowing whether or not I am. Another good thing happening.

So, it seems that positive thinking and positive action must exist side by side and probably have a synergistic relationship to each other.

I’ll provide another example; if we don’t have the positive mind set that things can get better then we probably won’t be on the look out for things that might help us get better. In my last post I wondered whether there may be any benefits for recovering from cancer through fasting of some kind. Then, recently, by a circuitous route, I noticed a short research report in an Oncology newsletter that talked about this very topic, and suggested that indeed fasting has been shown to be helpful in improving outcomes from cancer. So now I have a new bit of information, a new straw to clutch, a new possibility to explore, and I now have found some of the tools and search terms to help me with this quest. I’ll keep you posted. Basically I think I’d like to find a naturopath experienced with cancer to help develop and oversee a healing and fasting regime. I’ll keep you posted on this. I’ve talked to a local naturopath today and I’ll make a formal appointment to see him next week, to see if we can embark on this journey together. In a nutshell, if I don’t want to do any more chemo yet I want my cancer cured, I’ve got to do something. I can’t just sit back and hope, because the last scans showed pretty clearly that that is not really helpful.

If I’m brave enough I’ll work out some kind of program with him; when I say ‘brave enough’ I mean that my food is important to me, I love food, and over the last 30 years I have developed a food regime that I am happy with – it’s mainly healthy, enjoyable and apart from cancer, I rarely get sick. I’m pretty sure that probably the way forward for me will involve some form of detoxification and then strict attention to food in. Earlier in the year I tried a version of a vegan diet and found this fairly repulsive – I felt lousy a lot of the time, under nourished and I went off my food big time. I lost plenty of weight because there wasn’t much I felt like eating. Then one night M made a chicken and veggie soup, and it felt so right, so nourishing. Mind you, I still like eating most vegan and plant based food, but I can’t do it strictly as it doesn’t suit me. Slowly I have radically changed my diet over the last year or so to one where it is almost unrecognisable that I am the same person; funnily enough I quite like the food I’m eating now, and even if I get better I can see myself continuing with it for a long time, forever more or less as a basis for good living.

In the garden

Blueberry fruit forming
Blueberry fruit forming

Part of my healing revolves around doing work in the garden, growing food and keeping it at least basically tidy. Today I am focusing on some of the food production we have going here. At the start of this post I put a photo of our tamarillo tree, a marvellous fruit to grow in the home garden. We seem to have fruit most of the year round, without it requiring too much work or effort – a little bit of love and attention is enough.

Cherry guava fruit forming
Cherry guava fruit forming

As you can see from these photos we’ve got some food growing and eat at least something each day from the garden. All the food is grown without the use of chemicals, using organic methods such as manure, seaweed, wood ash, compost, lawn clippings, leaves, mulch, love, and so on. The garden got away from me over the past year or two, but with some help from friends it is gradually getting back into some kind of order; I must admit that being winter helps too in that growth slows down, whereas in summer and with the rain you can almost watch things, especially weeds, growing each day. You turn your back for a week or two and they have already quadrupled in size and taken over a patch.

Pumpkin in orange tree
Pumpkin in orange tree

Currently we are also eating from the garden carrots, greens, paw paw and tomatoes (it gives you an idea of how mild the winter has been so far, we still have tomatoes flowering and fruiting and we have passed the official half way mark of winter. By now the frosts should have killed these types of summer plants).

Turmeric, some or the smallish crop
Turmeric, some or the smallish crop

I try and use this time meditatively and with a healing purpose. Not only is the food physically good for us, bursting with vitamins and minerals, but it is emotionally good, growing our own, and the work it offers helps to keep my body moving and a bit flexible.

Today we brought home from our walk some food foraged around the town from some of the public veggie patches – we brought back a paw paw and some greens, which we promptly ate in our lunch time salad. I mean really, it’s hard to get better than this, isn’t it?

What next?

We are still waiting for an appointment with the Peter MacCallum centre in Victoria for an educated second opinion on whether or not they know of any other options that might be available for me. This should happen in the next few weeks.

We’ve just seen our local oncologist today and he is suggesting more chemo, specifically the name of the treatment is FOLFIRI, a combination of 3 drugs. He suggested that most people tolerate it reasonably well, although it can cause life-threatening diarrhoea (crikey, what a way to go). On the plus side it can set back the cancer for 12 months or so. Again, not curative but palliative, extending my life, and hopefully improving the quality of my life. If I go ahead with this it may happen in a month or so. I’m not looking forward to it but I don’t see many alternatives at the moment. It will require a pick line and/or port a cath – if you have read previous posts you may remember the trouble I had with previous ports, blood clotting, not working properly and so on.

I don’t want to go down this road, so I’m thinking I’ll have to put in extra effort into my own treatments. There are no guarantees with the chemo, except that it will make you crook as a dog, increase my chance of contracting other sicknesses from people, and nearly kill you with acute diarrhoea, just as there are no guarantees with the alternative methods I may try, except that I’ll feel good most of the time, and won’t be susceptible to every germ to passes by.

Anyway, onward and upward.

Crowd funding update

I’ll now provide you a bit of a reconciliation of how I am spending the money that was raised earlier in the year. With the internet crowdfunding campaign and the local fundraising auction, a total of about $23,000 was raised, so this is the pool I am working from to help pay for the costs associated with my healing process.

In the following table I carry forward from the last update a few posts ago.

# Item Amount $ Comment
1 Carried forward 7988 From last update – money spent
2 Morning after auction brekky 120 Breakfast provided for the people who travelled to Bellingen
3 House cleaning 60 For both Marilyn and Phil
4 Batteries 10 For electric pulser to cleanse blood
5 Printing 40 for auction
6 Capsules, legalon, B12, 133 supplements
7 Medical cannabis from Denmark 1000 30 ml. Hopefully good tumour fighter
8 More supplements and vitamins 200 Plus a book on food and diet for cancer
9 Medical cannabis from Aussie 765 A local supplier, cheaper, but not always available
10 Subtotal this table 2328
11 Total spent so far 10,316 Of the $23,000 raised. Approx 12.7K left

There are plenty more costs coming up, but I am fairly judicious about choosing what to spend the money on, otherwise it will run out before I am ready. There are many people who advertise a wide range of cures for cancer. They can’t all be wrong or all be right; my job is to filter through them and after evaluation of evidence, give them a good try. One good thing so far is that the cancer I have has been fairly slow growing which gives me the time to identify possible treatments that might help, research them a bit, and then give them a go. And this does take me time as I am not as energetic as I once was.

Luckily for me I have M on my team and she is terrific at finding things out, checking up on things, doing research, ringing people, and generally going into bat for me. I can’t do it alone and I really feel for people who have to do it alone. Thanks again, M. I love you.

 

 

 

 

 

 

 

 

 

 

Laugh and the world laughs with you, cry and you cry alone

This quote from the poet Ella Wheeler Wilcox goes some way to describe the last few weeks; please read on to help you understand more of what I mean by this. It may be connected with an observation that Ken Wilbur made when writing about his experiences of being a carer for his wife with breast cancer when he said that most people have difficulty providing consistent support to people with long term or chronic conditions. People burn out from the burden of your suffering, and coincidentally both M and I burn out from re-telling the story.

We love getting messages of support, but oftentimes feel burdened by answering questions and going over the gruelling details of what has been going on in our lives, in my life with cancer. So, if you want to know the story, read this blog; if you want to make suggestions, read this blog to see if we’ve already thought of them and tried them; if you want information, read this blog. If you want to give us a hand, well that’s a different story (No I can’t say that can I?).

And speaking of being helpful, we are very lucky to be surrounded by friends and family who are helpful; now the fundraising has finished, people have been helping out with practical things such as sometimes cooking a meal for us, doing a bit of shopping, helping with the garden, mowing, doing a bit of building and house maintenance, and generally being of assistance. Thanks to you all, it is very much appreciated and just goes to show that those sayings above about people not being able to support us through these tough times aren’t exactly true. Perhaps they do reflect much of what people feel, but people generally are good and want to help, even if it’s uncomfortable.

I’m now posting some writing from M that she would like to contribute to this discussion of relationships and cancer.

M’s Musings 2

The issue of changing relationships is a significant and common one where people with cancer and their carers/support people/loved ones, are concerned. To write about the myriad ways illness can impact on relationships is too huge a topic for here, so I will just say a few things that I have observed, witnessed and felt. Phil and I have noticed changes in friendships – those that disappear, those that come in stronger, and new ones coming in. And even in the relationship between the person with cancer and their partners, children, grandchildren, of course there are huge changes.

This topic of discussion arises regularly in the cancer support groups I have participated in. People joke, sadly, about getting a T-shirt that says “It’s ok: it’s not contagious!” The word ‘leper’ is used. And we talk about the possible reasons people distance or fade away :- ‘They don’t know what to say’, ‘They don’t know what to do ‘, ‘They don’t want to intrude’. Or ‘They are afraid’, ‘Can’t cope with the pain and suffering’, ‘Have enough on their plate’. All very valid reasons,( we know because we too have felt them!) however not very comforting or helpful to the people in this position. On the other hand the answer to these dilemmas seems obvious to us at times! ‘Find out what to say!’ ‘ Ask how you might help!’ ‘ Educate yourself!’ ‘ Own your own fears! Grow! Mature!’

However, when I can step back from my shock, disappointment and hurt about this, what I can see and understand is that there is a huge gap in our society, our culture, our education system, around these issues. About how to be with people who are ill, suffering, struggling. How to be present with care, respect, sensitivity, kindness. Not only to the person with cancer, in our case Phil, but to me also!

There are even stigmas around having cancer! What did you do wrong? What aren’t you doing right? And then there are the simple solutions some folk offer – You need to toughen up! Be resilient! You must be positive! You can do it! There is a huge tendency to blame the victim in so many circumstances, including this one. And we understand that view to be all about self-protection.

As you can see I am passionate about this whole messy challenging, issue. And, I am excited to realise the huge potential for education, for supporting others to be supportive! However, I just do not have the time or energy to launch that project just yet! And as Phil said today when we were discussing it – ‘it seems unfair that we who are suffering must be the ones to provide the education around this’. And I believe we do provide deeper understanding to others simply by sharing our experiences honestly and bravely.

When we were at the Gawler Centre retreat, we were encouraged to think of our lives as a bus, with us as the driver. To look around at who is on the bus. Who is along even when the road gets bumpy and rough? Who is discouraging, undermining,indifferent.  Are there people on the bus who seem incapable of being sensitive, respectful, tentative in their advice giving, and who are not open to learning? Then perhaps it is time to pull over, and (gently?) ask them to hop out! This can be sad, this can be hard or scary. Yet it also may be absolutely necessary and an act of self-care.

I also would like to acknowledge that sometimes, in a dark and stormy patch of this landscape, I see someone waving in the dark, signalling for me to pull over. I do and take the risk to open the door. ‘I would like to hop on board’, they say, ‘to travel with you for the next part of the journey’. ‘Great! Thank you! Welcome! Hop on board!’ And as Phil says, we gratefully acknowledge the large and the many daily small things that help us along. The wave hello, a smile, a hug, email, letter, card, flowers, vegies, meal, a phone call, private messages saying ‘I am thinking of you, how is it going?’ All of these genuine offerings of love, caring, concern mean a lot. Thank you xo

Ultra sound, CT scan and surgeon

Well, it’s been a very intense few weeks as far having cancer goes lately, and not much of it has been that pleasant. Let’s start with some good news. The ultra sound of the liver, stomach and pelvis showed that there are no abnormalities visible in the area, and this is particularly pleasing regarding the liver as scans more than a year ago suggested some kind of suspect shadowy figure. Clear liver is good; the scan also showed that the cancer has not moved into the skeletal system, again terrific because it’s not much good if it does. Usually very painful and very terminal (I mean, how terminal can a prognosis be?).

Now for the CT scan, the news is not so good. The original and primary tumour in the bowel is growing and appears to be growing through the bowel walls, hence the pain of the last few months. This is not a good sign and confirms the oncologists’ prognosis. This scan also revealed that the tumours in the lungs are progressing – there are more of them, albeit small as yet (approx. 5-10mm across) and the two that were stable have grown slightly in the last 4 months. Again, a bit devastating.

We spoke to a surgeon to see if there was anything he could offer; he was a lovely person, warm, friendly, helpful and communicative. He showed us the picture/scan of the bowel and pointed out how he could see the tumour growing into and through the bowel wall. Even though this is depressing, seeing the picture has helped me visualise it to send to the area my healing thoughts and instructions. Anyway, the surgeon said there was nothing he could do to help as having major surgery in my present state will most likely make things worse and not only reduce the amount of time I have left (I hate this language as it’s so confronting), but it will make the time much worse for me and reduce my quality of life significantly. Oh dear.

I have an appointment with the oncologist in a couple of weeks who in the meantime will discuss my ‘case’ with colleagues and come up with a recommendation that they all basically agree on. A fair chance it will be to just sit back and wait.

So as you can guess from the above summary there hasn’t been a lot to cheer about lately, and this is taking its toll on both M and I. We are both reeling from the shock and horror of it all. Yesterday I was crook with nausea and constipation and I really wondered if I was dying, if this was what it is like to die, and perhaps the cancer had flared up so quickly that it was now overtaking me at breakneck speed. Thankfully, as I managed to go to the toilet a bit, these symptoms cleared up quite quickly.

Pain management and constipation

I now require 24 hour pain management from the pain in the bowel area where the cancer is growing through and putting pressure on other bits of me there. This is hard to figure out, it’s come a bit out of the blue and I am navigating a very unsteady path through, not really knowing what is best. I have enough prescription pain killers, opioid based, to do the job, but it’s not simple as if I take too many I get the awful constipation and associated nausea, that is as bad as the pain from the cancer. It’s a balancing act which I have not trained for and has been thrust upon me without invitation.

I’m going to be getting some help with this as some experts from palliative care are calling in here at home tomorrow to discuss these things and help me forge some kind of reasonable way forward. I’m trying to be open minded to their ideas, even though I shy away from medical interventions wherever I can – you know the roundabout, take this pill for this, then that preparation for those side effects, and then do this to offset those side effects and so on, never ending round of getting worse. But, as I say, I’ll give it a go.

A palliative care nurse did call in as planned and she was friendly, knowledgeable and helpful. Terrific, and I’ve now got a few clues for how to manage the pain as best I can. Whew, and as we Catholics used to say: thank god for small mercies. I’ve been putting some of her suggestions into practice over the last couple of days and they do seem to be helping.

Can I cry out the disease?

Have I been or am I depressed? I have cried a lot in the last few weeks while feeling particularly wretched; I have been losing my grip on being positive and upbeat, losing my faith in all the proactive things I do to beat the cancer. What’s the point anyway, it’s still getting worse after all this effort and expense. The doctors must have been right all along and I am terminal, blah blah blah.

If I shed enough tears can this cleanse the cancer from my body? Tears for a life well lived, tears for a life I’m not yet ready to let go of, tears for my loved ones, tears for the person I once was and am no more, and tears of pain and agony. I don’t know the answers to this question or these questions.

I may not be depressed, my emotional state is possibly an extremely normal reaction to the circumstances. Victor Frankl urges me that my current task is to find meaning in the suffering; in fact, he suggests that to be fully human I don’t have any other choice. Being human means putting interpretation on our experiences; if I just feel like a hapless victim it gives me no power to be human, no power to look for the beauty in life that is still there whether I suffer or not, whether I notice or not. The beautiful sunset, the lovely warm winter days, the sweet birdsong of the magpie were there before me, are there now, and will be there once I am gone, whether I notice or care. Why not enrich my life by noticing and caring, by finding some existential meaning in my current hand?

Easy to say, but I’m finding increasingly that it is not so easy to do.

So, onward and forward, like the dice man, looking for the next foot hold or toe hold to keep me buoyant, to provide some optimism – as he says something like, at the end of the book of trouble and strife: Ah, another possibility?

To go onward and forward I still need to feel as though I have some say in the matter, as though I can make some kind of difference in my life. I met a man recently who has ‘terminal’ cancer, and it seems as though he is dead already, believing in his fate, not doing anything much to help him rise above the mire we are caught in. This seems to work for him, but I can’t see it working for me; for me it would be a sure fire slide into full depression, and I don’t need that. I think it’s right that I get worried, upset, sad and tearful at what is going on, but I don’t want this to be the only feelings I have about life, I need more for my life to have some meaning.

What if it is true that I have very limited time left; after I rant and rail at the apparent unfairness of it all, what is left to do? In my reality, to my way of thinking, I must put my time to good use and increase my efforts to make the world a better place by loving myself and others as much as I can, and put this love into action, not just thoughts, feelings and words. Fleshing this out more will take some doing, but I’m working on it.

I think I need to review all that I do to get better, objectively identify what I think is working and what is not, increase my attention to what is working and let go of what is not. I think I’ve been to this place before – I need to redouble the efforts to regain health. Instead of thinking that what I have been doing is not working, perhaps it is working to an extent and slowing down the cancer, improving my immune system and giving me the strength and will to live well. I don’t know but I am tending to choose this possibility rather than just giving up. I think it’s too early to give up and say: Okay, you’ve got me, I’ll just lay down and die now.

I’m not ready for this, although I may have to face it one day.

Even so, it is time to be realistic about my chances and put into place some contingency actions – what do I need to do in my life to ensure my loved ones will be okay once I am gone? Work this out and then do these things while I am still well enough. Teach them how to be independent of me, how to not need me. Ouch, it still brings tears to my eyes, but let’s consider it and make a bit of an effort just in case, perhaps before I am too sick to do so. This is not giving up, it’s being smart, it’s having a risk management plan that helps ensure success all around.

Hyperthermia

I wonder if any of you have heard of a treatment for cancer called ‘hyperthermia’? It’s a heat treatment that heats the body, or relevant parts of the body, to around 42 – 44 0C. Apparently the cancer/tumour cells don’t handle this very well as they can’t easily elicit the blood movement response to carry away the heat like our normal cells do. It supposedly results in tumour cell death while leaving normal cells relatively unscathed.

I’ve just been starting to look into it, but don’t know of any competent operators who aren’t just trying to get my money because I am a desperate cancer sufferer. If you know of anything please send me a message and I’ll follow it up.

Peter MacCallum Cancer Centre

I’m also going to go to the Peter MacCallum Cancer Centre in Melbourne, the preeminent cancer institute in Australia and a world class leader in research and treatment. They offer a service where they will review your history and put together a treatment plan. These people have their finger on the pulse of what is going in best practice on across the globe. I’ll ask them about the hyperthermia as well.

Fasting and cancer

I’m also wondering if there may be a role to play by fasting from food for specified times in the curing of cancer. After reading about life in the concentration camps, I wonder how many of those malnourished people succumbed to cancer? Again, if you have any experience of this, please let me know. I don’t mind losing more weight, I think I’ve still got a fair bit to play with. Interestingly, the survivors of those camps lived on very little food for several years and worked hard daily at the same time. I sometimes think that the oncologists overdo their worry about losing a bit of weight; I know, they are concerned that it is the cancer eating us up, and fair enough, but I think in my case I’ve got a way to go before this is a concern for me.

Till next time

Thanks for your interest, and till next time I bid you adieu, Phil

 

 

Bowel cancer is crappy

In this post M also has written a few words to help us capture something of what it’s like for her with me having cancer.

M’s Muses

Well, hello, I would like to say a few words about how life is for me, thank you Phil for welcoming me here.

 You have heard about me, now you will hear from me!

 What came to mind for me is the expression ‘the agony and the ecstasy’.

Maybe I will begin with the ecstasy!

What a privilege, a challenge, an honour it is to be companioning Phil along this journey.

 What a steep learning curve and how much I have learned.

What amazing things I am discovering about Phil, after living with him for 40 years, and about myself. And about others.

How humbling and surprising this journey is! What intriguing and astounding things I am learning about being human, having a body, and how to care for other and self. And most importantly, how to hold those two carings in balance as much as possible.

There is nothing else I would choose to do, nowhere else I would choose to be.

And the agony. Mmmm, well all of the above comes with pain, and stress, doubts and fears, loneliness and all the emotions which come with big change and crisis. Anyone who has journeyed with another during a crisis, will know what I mean.

I struggle. I lament. I cry out for help. And I fail over and over to be the person I would like to be in this situation.

For instance, just the other day, I lost it. I was strolling along, coming home after a walk, buzzing out in the sunshine and beauty, when a neighbour’s dog came running at me barking. In that moment I completely lost it. I was again the toddler who was facing death, experiencing primal terror when a dog knocked me over and towered over me. So, what did I do? I screamed at the dog! As loud as I could! I swore at the dog! I yelled at the dog’s owner who had come out to see what the noise was about I expect. I lost it alright.

I agonised over this incident for days; I have felt shame about my public embarrassment! Oops!

And I know that it is not ok for a dog to do this. And I would have liked the story to go differently.

And maybe it would have been, had the neighbour’s dog been contained, (which is what I shouted out!), had I been in a less stressful period of my life, had I not had such a fearful experience with such dogs.

And this is how it was. It was a scream which had been building up in me for a while I believe.

 And I will share more along the track, love to all.

Now, back to Phil’s writing.

In the past I’ve written a lot about how I am managing the bowel cancer that has taken up residence in my body; I have been commended by many people for my positive approach and inspirational tales. I admit that I am a person who likes to put theory into practice, and my mantra is that positive thinking needs to be put into action for it to be effective.

This is all well and good, but I don’t always feel like this. I’m not always positive, I’m not always very inspirational or inspired, and often I feel lousy, despondent, negative and fearful. For example, I’ve been going through a bad patch this last couple of months, driven by extremely dysfunctional bowel movements, pain around the site of the original tumour that has been treated with radiation, frequent nausea, constipation taking turns with diarrhoea, and lousy arthritis in the hips. I don’t know which comes first, but associated with feeling like this much of the time, I get down in the dumps, my happy and sunny disposition just seems to evaporate into thin air. I can sometimes barely be civil to those around me. This is no good as the people around me only have my best interests in their hearts; this is something I’ve struggled with since the diagnosis – it’s almost as if when I am upbeat and positive, those around me shine much more as well, and if I’m depressed and obviously pained, those around me get anxious and upset. Regular meditation and plenty of this beautiful winter sun are great antidotes to the black cloud, so I recommend them highly.

Still, nowhere near as bad as Alexander Solzhenitsyn’s One day in the life of Ivan Denisovich, or Victor Frankl in the Nazi concentration camp. Even though this is true, it is still my life and it means a lot to me. These are my experiences, and I don’t want to compare them to anyone else’s to see where I fit in on a scale of 0-10 according to a perhaps arbitrary or artificial judging scale.

Despite this fact that the unpleasantness of living with bowel cancer more or less defines my life at the moment, I don’t want to make these horrible experiences the main focal point of my musings. I’ll give them enough weight to motivate me to think and feel and express, but hopefully that’s all. So let’s move on.

Holiday by the beach

View from verandah
View from verandah

Just about all my and M’s efforts in life these days are designed around the principle of whether or not any particular activity, thought, word or feeling is good for my healing or not. This is not always a simple matter; what is good for me? On what level is it good? Can something simply be either good or bad for me, so black and white? I mean, what about the sun – essential for good health, not only the vitamin D, but our skin is like a solar farm that powers our body: we create energy from the sun and use it to live. Then again, too much can give you cancer. It’s the dosage that’s important, as I learnt in my health and safety career. Many poisons are healthy in small enough doses. Could red meat be like this? Last year I made quite a commotion about the World Health Organisation declaring that red meat is probably carcinogenic and processed meat is carcinogenic. I was quite taken aback by this. Over the months I’ve been thinking, what about dosage? What is the dosage level? For example, occupational hygiene seeks to provide workers with a safe workplace through deciding what level of exposure is safe for most people before they get injured by the product or process. Again, they determine the safe/unsafe threshold, and this is the dosage – how much of it is a good thing and when does it become a bad thing?

We were listening to a CD of a cancer conference in the US and one of the presenters, a cancer survivor, suggested quite seriously and with humour, that sometimes lard cakes can be healing. This goes against much of what we are told – that food is purely physical in its reactions with and influences on our body. The conference presenter’s suggestion that food that appears to be unhealthy according to all our physical ways of measuring can actually be healthy, calls up a whole new paradigm of understanding the world, perhaps not unrelated to the field of psychoneuroimmunology. The emotional context of what and how we eat may be very important too. We all know that eating lard cakes as the main constituent of our diet will do us harm; but, in the context of an otherwise healthy diet, can the odd cake, eaten in a way that provides emotional support, really be that bad for a person? Could it in fact sometimes be good for a person’s health? I tend to think it’s ok, but I’ve never really been a strictly strict disciplinarian. What is health? what promotes it? what works to its detriment? Apart from some fairly obvious things, it’s a wide field open to interpretation, with no clear cut answers. I keep coming back to the fact that I have been a health food eater for over 30 years, and I got bowel cancer. I don’t think there is any simple answer to be found in food.

Somehow that rave has brought me to telling you a bit about our recent few days in a holiday cabin by the beach at South West Rocks. If you read through my last post you’ll see that in the table of how the fundraising money is being spent I included $325 for this adventure. We both saw it as a healing time, a chance to get away from the busyness of our lives, take stock, immerse ourselves in nature, and take a deep breath. Let me say at the outset that it was excellent and all our healing aims were achieved, although no actual magic or measurable healing took place that I could see. Within the context of our lives being mainly about healing, this fitted in perfectly.

How so, you might ask? Well, for a start it was set right in amongst the forest, so all you could see were the trees, right up to the house. Plenty of birds, bats and other wildlife. It was so close to the beach you could smell it, hear it, and get a glimpse from one of the verandahs. We did 2 meditations a day, sometimes at the beach. Walked on the beach, in the water and over rocks, earth and grass. Didn’t really have any phone or internet access, so a break from the constant touching bases with this virtual world, but also a little break from the invisible radiation that carries these modern methods of being through our lives.

Meditation on beach, hidden crab
Meditation on beach, hidden crab

Balancing heaven and earth

I tend to rave on a bit about the energy of the universe, how it permeates everything and makes the world hum along with life. I love tapping into this energy consciously – I try and see it and feel it, invite it into my inside world, encouraging it to vibrate me harmoniously according to its own rhythm. Sounds lovely, and it is. You could almost live on it, I think as I eat the golden rays of the sun and lively orgone energy through my open mouth, trying to get them to bounce around somehow into my lungs to bring light to the tumours there, exposing them for what they are, agents of darkness and death.

In this photo above that’s exactly the sorts of things I’m doing, while feeling the energy of the earth enter my space from below, targeting the sick and sore bowel; I’m providing a short, direct and active connection between the cancer and the energy of the world, hoping this will help me heal. It’s a bit trippy, and I’m really enjoying it, feeling good about being able to feel this connected to an eternal life giving presence.

So, this is the heaven part of it, the dreamy goal. Enter another form of physical reality, the life on earth.

During my blissed out state, I start feeling something seeming to be having a go at my head. I try and ignore it and get back to my meditative state. But there it goes again; suddenly I realise that a crab is starting to eat me, or certainly making the first tentative steps towards it. I’m convinced that if I couldn’t move for some reason, it wouldn’t be long before he would have called over his mates and they’d be pulling me apart, thankful for such a feast on their doorstep. But, luckily for me, I could move, and I did so quite quickly once I realised what was going on. The little buggers, and I was feeling so great being part of the all, don’t they have any respect for this? I’m thinking that this is where a balance is required. We have dreams, ideals and esoteric tendencies, and these are great and need to be fostered. Then of course we need to eat, be safe, warm and dry, and these are very pressing things that need to be paid their adequate attention, lest we ourselves die through lack of attention. Somewhere between the cosmic and mundane there is the reality we make of our lives.

Killer ducks
Killer ducks

This was a funny sign near the picnic area at the reserve near our house. I don’t know about you, but it’s the first time I’ve ever heard of killer ducks.

Phil at Trial Bay Gaol
Phil at Trial Bay Gaol

We went for a visit to the old Trial Bay Gaol. This is inside one of the cell blocks. The people who lived here really did have a hard time, again helping me to keep my suffering within some kind of context.

Flexible sigmoidoscopy, not as much fun as it sounds

Finally my time came around last week to undergo the flexible sigmoidoscopy, or the camera up the bum trick. This is usually not too bad, and the one I had a year ago was no drama. It’s a simpler procedure than a colonoscopy, with the camera not going up/in as far and the preparation not as gross. In fact, there’s not much preparation apart from not eating a lot of seeds and nuts in the days leading up to it, and keeping away from dark foods such as beetroot that can interfere with vision. This was easy.

However, on the day, things didn’t all go perfect for me. The first part of it was getting the Fleet enema, which is designed to clean the rectum out of poo so they can see in. A tube is inserted into the anus and a special liquid squirted inside you. After about 5 minutes it’s time to go to the toilet and evacuate the watery pooey mess. It isn’t quite so easy for me as I have a tumour near the anus and it is accompanied by radiation damage and scarring. In short, the tube hurt quite a bit going in and while the liquid was squirted into me, but not too bad and it was over pretty quickly. A few deep breaths got me right again.

Next it was time to have a cannula inserted into the back of the hand so that the appropriate anaesthetic could be administered when it was time. I was a bit nervous as my veins have been trashed over the last couple of years and regularly do not give up blood but turn into dry clayey creek beds the minute a needle comes close. The nurse was terrific and it went in easy first time. Another winner. I thought nothing could go wrong today, and the sun was shining…..

But by this time I was feeling a bit, quite a bit, uncomfortable in the tummy, so needed to go to the toilet again. I got a few light pains in the guts during the bowel movement, but nothing too bad. Back to the waiting room. Then some real pains started, in my lower front, lower abdomen, kind of in front of the bum, accompanied by a real need to go to the loo. I made it there, but there was not much action happening, a few runny dribbles, but not that much, but the pain and cramping got much, much worse. In fact, I got to the point of feeling that I was going to pass out, there on the toilet floor, from the pain. I managed to stand up enough to unlock the toilet door so that if I did faint, someone would see me lying there. As it happened, I didn’t lose consciousness, and the pain eased enough for me to try and make it back to the bed. I was stumbling and reeling from the pain. Some staff saw me and helped me back to the bed. The head nurse took one look at me and knew I was about the conk out – she said my colour was grey and I was sweating profusely. She immediately got me laying down and organised a drip for my arm to replace my fluids. She helped to settle me, talking me through some slow deep breaths and I put back some colour and became more alert. There was a bit more of this over the next half an hour or so, and then it was time for the procedure. They had already put someone else before me into my time slot because of all this reaction to the enema, and I was now the last person in line; it was now or never, so to speak.

It went well, the doctors, nurses, assistants and everyone were very nice, seemed very capable and I knew I was in good hands. I was given a mild anaesthetic and drifted off into a beautiful sleep.

Fundraising update

Our daughters, with some help from our son, put on a local auction as a fundraiser to help me pay for life with cancer, and especially to keep up some of the ongoing expenses (e.g. medical cannabis, herbs and vitamins etc, about $200 a week or so, travel to appointments and so on). Many local businesses, family and friends donated goods and services to be auctioned at this party event. Family and friends came for the weekend from far afield, and were welcomed into the community. Well, it turned out to be a great success, with over 100 people attending, the musicians doing a great job, the MC (Macca) outstanding, and everyone came along with a spirit of generosity.

Financially, it was very rewarding, raising almost $10,000, including the raffle drawn on the night.

Plenty of people went home with either a bargain, or something useful they had bought, sometimes not at a bargain price I am told.

I haven’t had too many new expenses since the last update, so I won’t include a table of expenses in this post, but will next time. I intend to make the money last as least one year, and that’s one reason I’m posting income and expenses updates, to help me track how the money is being spent. I understand you may not care, you may have donated just to ease our financial burden, but I want to know how I am spending your generous contributions.

I made a video to show at the end of the fundraising auction. I don’t have the capacity within this blog to put videos, but below I’m including the transcript of the video, in case you are interested.

All the best to you all, Phil

SCRIPT FOR FUNDRAISING VIDEO

Hi everyone, lovely to see you here, although it is really only an electronic version we are seeing tonight.

Thanks for coming and I hope you’ve had a good time, enjoying the friendship and love being shared during this fundraising party.

As you know, I’ve been managing bowel cancer for close on two years now and it’s been a pretty rough ride for both me and our family: physically demanding, emotionally challenging, yet somehow spiritually rich. What helps to build this richness is the love and support I receive daily, from those close and those far away, from family and friends as well as colleagues, and even some people I don’t know. I’m surprised at the number and type of people who wish me well.

Thanks for parting with your hard earned cash to buy some items on offer here, the money helps to fund my treatment, both directly and indirectly. Directly, it helps to pay for treatments designed to boost my health, and indirectly it helps to pay for things to make life a little easier at the moment, for both myself and Marilyn. The money takes some of the stress away so that we don’t always have to worry about how much things cost, within reason of course.

Without Marilyn I would be lost along this journey, but she helps me to keep finding the path to health and healing when I have strayed into the undergrowth of despair and negativity. So, I give my public and sincere thanks for your love and consistency.

It’s not just about the money that is being raised and donated. It is also vitally important that I feel loved and connected to the world, and the showers of prayers and messages of hope from everyone keep my fire burning bright. Despite what the bone pointers predict, I feel as though it’s a long way to go still, so I need to keep my strength and determination strong.

My path to healing involves making changes to my life, and these are changes for the better. Some people who recover from cancer even say that cancer was the best thing that happened to them. I have definitely NOT got to this point yet, but I occasionally get glimpses of the good things it is offering. Just like the closing ceremony in The Life of Brian, I often find myself singing always look on the bright side of life.

So, what can I be grateful to this cancer for? I’ll list a few things for us to consider:

  1. When I was diagnosed I knew straight away that I had to give up work, so I could put my best energy into getting better. This has been terrific, as I’ve always thought I was born to be wild and free rather than chained down by the daily grind of commitment to someone else’s values. So, giving up work was a no-brainer, and I absolutely love the lifestyle of not working, although I still do not recommend getting cancer as a way to achieve this.
  2. Incredibly lucky for us was the fact that, for the first time in my life, I took out wage insurance that paid me a percentage of my salary if I became too sick to work. Wow, what a life saver. It ran out when I turned 65, after which I have been eligible for the aged pension. All good.
  3. We moved back home to Bellingen for the healing. I had been working in Sydney at a stressful job, and moving home has been a godsend, reducing stress and increasing love and belonging.
  4. Being close to children and grandchildren. Apparently laughter is really good medicine, and the grandchildren certainly help with that. They laugh spontaneously very often, their cheeky grins gaining pleasure from pushing the boundaries of what we think is important. The laughing and playing has been of great help, physically, emotionally and spiritually.
  5. Having the time to concentrate on my own inner life. I’ve always been attracted to spiritual connection (think of those early religious days I had). I now have plenty of time to indulge this. I would have happily made a living out of this if there was any money in it.
  6. Learning to say NO. Sometimes I think I have been a bit too nice, and now I am learning to listen to what I really think, and give it more air time and credibility. Like someone down town recommended to me after I told them I was sick: Phil, you need to get a bit of mongrel into you. This was said quite seriously, and aligns with some research that reckons that cancer is often a “nice person’s disease”. So, if I upset you with what appears to be thoughtless behaviour, please cut me a bit of slack, I’m just learning to listen to my own needs.
  7. I have lost 20kgs of weight, which is a good thing. I’m now more like the weight I was in my mid twenties. This is not because the tumours are eating me up, but because I have learned how to eat better. Still, I don’t recommend getting cancer as a good way to lose weight.

In summary, my approach to my own healing is to do all I can to improve the functioning of my immune system. So far I also have done everything the doctors have recommended, but that hasn’t made the cancer go away. I have made and continue to make changes in my life that I think improve my chances of survival, and if they don’t, they help me have a good life anyway.

So again, thanks for the night, thanks for the love and support, the prayers and well wishes, and for the financial contribution to this healing process. Be kind and loving to each other and the world.

Bye for now.

 

 

 

Day by day

So, here we are, like everyone else, living life day by day. Perhaps having cancer has given a greater sense of urgency to live life to the fullest, perhaps not. Struggling with the all too regular pain, nausea, constipation and other symptoms of living with bowel cancer. None of them are too bad, they are all eminently manageable, but they do tend to wear me down a bit. I’m not sure if these are still side effects of radiation and/or chemo, or whether they are because of active tumours. It’s hard not to worry.

Both M and I are a bit like hermits, not going out much, not socialising much, not partying much or getting up to too much mischief. Still trying to figure out what sort of diet/food is best for me, and often I don’t know this until I am presented with food and either am attracted to it or repelled by it. This is hard for M to know what meals to prepare that are at one and the same time nutritious and I will eat. Hard for shopping, knowing what produce to buy.

The guiding principles for food are that it is mostly organic, mainly plant based, more or less no red meat, a bit of organic chicken and fish, a little bit of dairy, not really any processed foods, very little if any sugar, and palatable. This leaves a lot of food in and doesn’t exclude much real food. My appetite is slowly returning as I went off my food for probably 6 weeks or so. This is ok to an extent (lost more weight – lost about 20 kg since becoming sick about 2 years ago), but I must eat to keep strength and health up.

Since going on the retreat I have tried to introduce a bit more structure into my life, structure that is aimed at facilitating healing. For example, get up around 6.30 or 7, have a fresh squeezed lemon juice, chat for a little bit and wake up, by about 8 do a half hour meditation. After that perhaps a cup of tea (for me, weak black with some peppermint thrown in), then brekky (consisting usually of fresh made porridge with apple and either goji berries or other dried fruit cooked in it). If it’s a nice sunny morning I’ll spend about half an hour in the sun, doing some exercises, stretching, massaging, and generally feeling bathed in the universal energy activated by the sun. Following this, make the first juice of the day, often carrot juice, followed by taking a half a dozen supplements, including the medical cannabis. If I remember I’ll strap on the Bob Beck pulser that puts a tiny electric current into my blood stream to help cleanse the blood of nasties. If we feel like it, perhaps a coffee at around 10.30 or 11. Then it’s time for some physical activity which will often be some work outside or a ride on the exercise bike. I love to do a few jobs around the house which I find very enjoyable and actually gets practical things done that need doing, such as gardening or house maintenance. My stamina is not terrific so this is often broken up into half hour bursts, with resting/lying down in between. Often some lunch around 1 or so, a second juice, followed by a rest and/or sleep. If possible, some more physical activity later in the day, a third juice around 5 (possibly carrot, beetroot, celery and ginger). Another half hour of meditation and then it’s getting dinner ready. We often eat by about 7pm or so, and spend about an hour watching something on TV, usually a show that M has recorded and that we both like. That way we can watch what we want, when we want, and can fast forward through the ads if it’s on commercial TV. By then it’s time for bed at about 8.30.

Of course, this is never the same exactly from one day to the next but it does provide plenty of focussed time to concentrate on healing. And also I do like to have a day off at least once a week, often on a Sunday.

Sometimes I forget that there needs to be plenty of joy, fun and laughter in life, and this is often provided by spending time with the grandchildren. We also try to be good company for each other and often make jokes if we can, or look for and share jokes that we come across.

We don’t want life to be all about the cancer.

Sigmoidoscopy

As you may have read, the last CT scans showed that the two remaining active tumours in the lungs had been stable over a 4 month period, which is great. Because of my irregular bowel movements, the oncologist suggested we now turn our attention to the site of the original tumour in the bowel, and have what is called a sigmoidoscopy, the camera up the bum, but not all the way like a colonoscopy. As a public patient, and with symptoms that do not suggest any immediate blockage, this is taking a while to organise; I’ve finally been given a date which is 19th May, so still almost 6 weeks away. All I can do till then is try and get better, focus on strengthening my immune system, helping it to seek out and remove any cancer that it can find. M is a great help in doing this, and it’s obvious that we must embark on this for the long haul as it doesn’t get better overnight.

Being in the moment

I get a lot of joy and fulfilment when I remember to just experience life now, not worry about what might happen or what has happened. I like to experience this at least once or more per day. I’m learning to tap into this pretty quickly when I think of it. Somehow I’ve learned to just close my eyes, remember my place in the universe as an energetic being sharing the energy and love that moves through us all, and just feel the presence of this.

During meditation the other day I was imagining this love energy enveloping my body in its embrace, soothing me and holding me, cradling me as a mother might cradle her distraught child. I could feel it permeating my being, caressing the tumours, and generally enlivening my whole system. It could be the fact that M very often sends me healing energy during meditation, what I have called distant intentionality in the past. It could be that others are also sending this healing, e.g. a lady says she sends me Reiki through the ether. Feeling this energy is good and brings an involuntary smile to my face. I’d like to live in this place more often, but that doesn’t seem to happen as I am a physical body with physical needs, I am an emotional being with emotional needs, so I need to spend a fair amount of my time living in the physical and emotional world, taking care of physical and emotional business, to keep my physical and emotional bodies alive.

Crowdfunding update

The 3 month crowdfunding campaign has just come to a close and it raised a whopping $13, 115. So thank you very much for your kind donations and well wishes. 120 people have each contributed something – it’s amazing how it adds up when many people take one step each, towards a common goal, creating synergy and power.

However, our children are not content with that – they have organised a fundraising auction to be held in Bellingen on 30th April. Many things have been donated and they are expecting quite a crowd with a lot of interest. Many of my family are coming here from Sydney to lend their support. It’s shaping up to be a great and busy weekend. It is a particularly busy time for our daughters who are organising it, and especially for Lia who is the local rep for this event. So a big thank you and hug to you for this. To find out more about this, go to facebook and search ‘Support Phil’s Journey to beat cancer’. The link is:

The money is a tremendous help and allows us to fund more treatment than I could possibly do otherwise. Now that we are not working money is in short supply. I know money can’t buy happiness and health and it’s not the be all and end all in life, but it is opening up more possibilities for us during these hard times.

Below is a table of how the money has been spent so far:

# Item Amount $ Comment
1 Carried forward 5365 From last update
2 Massage x 2 @ $80 each 160 For Phil
3 Massages, transport, red noses at Gawler retreat 587 For both Marilyn and Phil
4 Taxis, food etc, 157 To and from retreat
5 Surgeon 130 Consultation to organise sigmoidoscopy
6 Flights for auction fundraiser 300 Ariel travelling to and from
7 Theracurmin 64 Tumeric based capsules
8 3 nights at South West Rocks 325 Holiday by beach for Phil and Marilyn, for healing, recovery and recharge
9 Subtotal this table 1723
10 Medical cannabis 900 second shipment on the way
11 Total spent so far 7988 Over half of 13000 raised

 

Thanks once again for showing an interest in what I have to say and my dance with cancer. Till next time, keep well and healthy and love your family, friends and neighbours.