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
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.
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.
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:
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.
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.
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?
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:
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.
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.
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.
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
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.
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.
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.
|1||Carried forward||12, 294||From last update – money spent|
|2||Batteries||22||electric blood purifier|
|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|
|8||Flights, cancer conference||587||M and myself to Sydney|
|9||Food, taxis,||104||Cancer conference Sydney|
|11||CBD oil||762||medical cannabis|
|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.