Stop Being Nice!

I spent a good part of my life being nice and in the end I paid a very heavy price. The development of my tumours 14 years ago was to a large extent due to my being such a nice guy and burying my real feelings behind a concrete Crusty the Clown mask. Now days I try to look how I feel but sometimes it takes effort and awareness. Having mastered the art of the mask and spent so much of my life as a pushover and a walkover, I now recognize the nice people of the world a mile away. So unless you want to spend a life time suffering or develop a life threatening disease like I did, stop being nice and stop rolling over whenever you someone hurts you and you fear that you’ll hurt their feelings if you say something. There’s a big difference between being nice and being kind. I am a kind person by nature but I am far from being nice. Niceness kills, kindness brings you to life! Save your expressions of niceness for when you genuinely feel something good. In other words, wear the face that you feel and stop pretending to be something you’re not. If you don’t you’ll shorten your life and shorten the lives of people around you! Feel everything, even and especially your anger and express what you need to express, as best as you can, before it eats you up alive! And if you can’t express your anger, don’t eliminate it, try to understand it and express it in a non destructive way that liberates you from the chains of your own niceness! I say non destructive but maybe somethings need to be destroyed!

Fuck being nice! Stop being someone elses image of you! Be the image you have of yourself!

More on people pleasing here : https://etandi.wordpress.com/2020/02/17/the-good-child-people-pleaser/ and related reading here : https://etandi.wordpress.com/2018/11/14/books-that-changed-my-life/ (see especially Thomas Moore, Tony Humphreys, Lawarence LeShan, Sharon Kauffman and Ainslie Meares; add to that list Gabore Mate and someone who has recently become very popular, Jordan Peterson (who I have only heard a little but not read : https://www.jordanbpeterson.com/).

Don’t Get Sick!

Sometimes having tumours really sucks! I’m in my 14th year and I am so frustrated with the medical system! Here in Australia we have a medical system that depends completely upon the efficiency of the General Practitioner (MD). My GP is a really nice guy and he’s OK as a GP but he’s one man trying to serve a very large rural catchment and do everything for everyone, who as a result of having so many patients, barely listens to what I say. As often as my GP is helpful, he’s counterproductive. Today I went and requested 2 simple scans and a blood test to help determine the extent of my Osteopaenia/Osteoporosis (I have terrible back pain) and tumour necrosis and when I got back to the car I realized that he’d written out referrals for something completely different – 2 CT scans, despite my saying I have had too many CT scans already and don’t want any more. I wasted 2 hours in the waiting room, an hour traveling, 60 km driving, time and fuel, for fuck all nothing! Then there’s another set of problems in our health system – administration staff have too much power and the huge power differential of doctors over patients. Admittedly administration staff have a difficult time. (My sister Susy did this sort of work for some Oncology consultants before she died of brain tumours herself.) However many admin assistants are also control freaks. I had an ultrasound of my tumours to determine if they were necrotic last week and the Sonographer suggested that perhaps an MRI could be useful if I didn’t want a CT scan. So I asked an admin lady who has been very good over the last year if I could have a few minutes with an MRI tech (I meant radiographer but my glucose was low from fasting and I couldn’t think). She contacted the radiography technicians (not the radiographer) and they said no. I then asked if she could leave a simple message for me – “Can MRI determine if tumours are necrotic and the extent of the necrosis?” and email me the answer. A 30 second question with a 30 second answer, that would allow me to book an appointment with my GP the next day, so I could get a referral for an MRI the following week. She said no and refused to help me. I asked again, saying that it was important to help make a decision about future treatment or surgery. Then a grumpy senior admin lady came over and took over the discussion. I began feeling quite irate but I remained reasonable. She told me to go back to my GP. I said he didn’t know (he didn’t when I last asked him). She told me to get another GP. I told her it was imperative I find out soon so I can make an informed decision soon, given the size of my tumours. She gave me a grumpy look and stood her ground. So I left, pissed as hell with the whole God damned system! 5 minutes later I had my answer from the internet but decided I would go somewhere else for a scan.

So I’ve encountered these issues time and time again. GPs who don’t listen and who write out the wrong things or who argue over what I ask for. Admin staff who get shitty when you make a simple request – be it to have some paper work filled out or to leave a message with a doctor etc.. Technicians and doctors who refuse to take 1 minute out to answer a critical question.

I honestly feel like saying FUCK THE WHOLE MEDICAL ESTABLISHMENT! When I worked in a hospital (ABI and oncology) I saw the same things play out and people treat patients like crap. Perhaps that’s why I got along well with most of my clients because I took time to listen to them and to help them. I made time and I did what I could to ensure that they left with what they needed! As I have said many times before, the alternative health sector is no better, with people running around preaching miracles, offering black boxes in which they have no fucking idea how things work, ready to take your money and con you into another 10 sessions of having goats milk shoved up your arse (and other more realistic things)!

As the years have gone by and my tumours have grown, I have learnt to feel so much more and to deny nothing. I really feel everything! I am no longer Mr Nice Guy who puts up with all kinds of crap. I tell people what I think when they treat me or someone I care about badly. But there are still situations from time to time where I feel that people and the system make it impossible to be true to who I am. Still, when I realize that no matter what fuckwit decides to exert their petty power and control and limit my choices, I ultimately have choices to make and just because it feels like my choices have been limited, it doesn’t mean that I don’t still have a range of choices to choose from.

So this is one of those situations. I went back to my oncology nurse for help and I’ll see how that turns out.

I often turn to Dr Dude for help and he makes plenty of useful suggestions but it’s still useful to have a scan to see a thing for yourself and to explore all the options. I may have contact with ETs but I still have to make informed decisions for myself! ETs can’t do that for me!

Truth be told, I have days when I think I’ll never have another blood test or another scan or see another doctor again and fuck whatever happens! My ex wife never sees doctors, which always bothered me. Her father was the same and he died of a preventable cardiac arrest. But sometimes I think there’s merit in avoiding the medical system. Sometimes engaging with the system causes more stress, discomfort and suffering than the thing itself! If I drop dead from these tumours in the next few years or decade, you’ll know it’s either because I didn’t learn well enough what they had to teach me or because I said FUCK YOU to the medical establishment and let things run their course!

There is nothing more confronting than an angry middle aged man!

Having said that it’s a new year and I am determined to continue focusing on healing and being healed, no matter how much shit I’ve endured!

My advice to all of you : Look after your bodies and your minds and don’t get sick!

ET Wisdom and the Power of Choice (Become the Music)

Last night after receiving the knock back I mentioned regarding accessing the clinical trial for the tumour treatment I’ve followed for 12 years, I felt a little crap. But then within a couple of hours I felt incredibly liberated and I realized how much I had tied myself to an idea and limited my options for how to see my healing and any potential treatment options. I had forgotten what my guide Kanatek and my ET friend Dude had emphasized  – that the attitude I have to a particular treatment is everything, not the treatment itself. And so last night I thought very constructively about how I had allowed myself fall into the trap of seeking physical salvation from this one treatment and had let myself develop a fear about the other treatments. Dude has constantly reminded me that the supposed risks and side effects only have power if I allow them to. No matter how much I have visualized and felt otherwise, no matter how much I have tried to feel healed, there has always been the concern that if I fail to heal myself, I will have to accept a treatment that could kill me. I’ve been very good at concealing this fear from myself. Well I now understand this completely and see how I can approach what could be very dangerous treatments in a completely different way. I may or may not have any treatment. I don’t know. After 12 years, I am tired of the tumours and the effects that the hormones they secrete cause. But I have survived because of my attitude and the care and love of others – living and dead. If I am to live a long healthy life and heal completely and feel completely healed, I will need to let go of poor ways of functioning and unhealthy mental and emotional patterns in how I relate to this disease. I have always understood this but have failed to act on it every moment of the day.

Last night before bed I read Dude’s 9 lessons for living a healthy, long, abundant, satisfying and content life and a bunch of other suggestions that he has given me over the years on healing and I realized that I am so, so stupid ! Just because I have a telephone to ET (i.e. can talk to an ET whenever I feel like it) doesn’t mean I always pay attention to or remember what they teach me. I am vulnerable to ignorance, forgetfulness, desire and stupidity, just like every one else ! And it really annoys me that I am so stupid ! I always feel that pain is a reality that happens in the life of every living being but suffering is an option. I’ve had plenty of pain and plenty of unnecessary suffering that I really could have avoided, if I wasn’t so stupid !

In the early hours of this morning I had a dream in which I was a dog who was tied up with all this debris and nylon and string and rubbish that stopped me moving freely and a farmer with a bulldozer was trying to run me down and I was desperately running in circles trying to get away, until suddenly I realised I could chew through it and break free. And as I did so I felt so incredibly liberated ! When I woke up it was clear to me that it was a dream about how I tied myself to an idea about treatment and fallen prey to my own ignorance and I was running around in circles suffering needlessly ! So much of what we do causes unnecessary suffering for ourselves and for others !

In reviewing Dude’s 9 life lessons last night, I remembered something that he has said to me time and time again. It’s essence is embedded in the 9 life lessons. And it’s something that I’d like to share with you because it may well be the wisest thing that anyone can every share with you. For every choice that we make (of any size), there are three choices that we can make that go along with that choice but most people never make conscious choices and so they miss the opportunity to make the healthiest possible choice for their body and their spirit.

In every choice that arises in our life :

• We must choose from a number of possibilities. Sometimes there are only two choices and sometimes there are many more.
• We also have a choice about how we make that choice. Do we use our mind, our heart, our body or all three ?
• Once we have made a choice, we then have a choice about how to react to the choice that we made. Do we accept it or do we regret it or complain about it ?

In thinking this through I realized how badly I have made choices about my treatment options and many other things in my life. And how many choices I have made about important things where I have allowed things to remain unconscious, rather than bringing them into consciousness and making a choice that was informed by my mind, heart and body.

Choice really is the greatest power in the universe ! Just ask Thanos or Nelson Mandela or Adolf Hitler or Donald Trump or Jesus of Nazareth or a kid who does a mass shooting in his school because he can’t stand being bullied any more or the father who is a workaholic and realizes on his death bed that he should have spent more time with his family. You want to be free and to be satisfied and content ? Choose well and start by seeing all your choices !

If you’d like to know more about Dude’s 9 life lessons or you’d like to read them again, check out the following links. I broke his lessons into introverts and extroverts versions because I know both types of people read this blog and introverts don’t mind taking their time to read something detailed, while extroverts want a summary here and now ! Most extroverts will not have got this far ! So, for introverts (longer attention spans) go here :

• https://etandi.wordpress.com/2018/12/26/dudes-9-lessons-for-a-healthy-long-abundant-satisfying-content-life-for-introverts/
• https://etandi.wordpress.com/?s=Dude%27s+9+lessons
• https://etandi.wordpress.com/2019/01/14/dudes-9-lessons-8-for-a-healthy-long-abundant-satisfying-content-life-for-introverts/
• https://etandi.wordpress.com/2019/01/20/dudes-9-lessons-9-for-a-healthy-long-abundant-satisfying-content-life-for-introverts/

And for extroverts (shorter attention spans) go here :

• https://etandi.wordpress.com/2018/12/25/dudes-9-lessons-for-life-1-5-for-extroverts/
• https://etandi.wordpress.com/2019/01/03/dudes-9-lessons-for-life-6-7-for-extroverts/
• https://etandi.wordpress.com/2019/01/14/dudes-9-lessons-for-life-8-for-extroverts/
• https://etandi.wordpress.com/2019/01/20/dudes-9-lessons-for-life-9-for-extroverts/

And you can read more of Dude’s reflections here : https://etandi.wordpress.com/2019/01/20/dudes-reflections-on-his-9-life-lessons/.

At some point I’ll compile an introverts version of the 9 life lessons in a pdf document and the entire subject will be in the Conversations book (the second Dude book).

I’ve also created a permanent page for Dude’s 9 life lessons under the An ET Called Dude tab here : https://etandi.wordpress.com/dudes-9-life-lessons/ because I feel that what Dude has given me is priceless and I care about the human race ! To be a good person we must practice being good to each other ! I may loathe most of the human race but I still care !

Some of you will know that the song below Little Green Men is one of my favourite songs and a cool song about little green men. I’ve also posted a great video from Steve Vai on how to visualize succeeding in your endevours because I think it epitomizes a lot of Dude’s teaching on healing and living a full life. And apart from that Steve Vai is such a nice guy and a wonderful musician, who really knows how to enjoy life to the full !

I dedicate this post to Marcus for having the guts to appreciate Dude’s 9 life lessons and for living life to the full and trusting that the universe will take him where he needs to go !

 

An ET on Connecting with God (and healing)

I dedicate this post to Sandor, Chris and Marcel for your recent donations. It is very much appreciated ! Sandor you must have Saint Nicholas DNA in your blood to keep giving in such a generous way ! Thanks to Sandor, Chris and Marcel, this years final fundraiser is now up to $ 400. Thanks to everyone who has kicked in so far ! I also dedicate this post to Darci for sharing your own experiences with someone who expressed their own divine nature through their own distinctive constitutionality and your recent reminders to let go !

* **

Many of you know that in June 2007 I was diagnosed with an exceedingly rare Renal Carcinoid tumour and that I had surgery to remove my left kidney and tumour but tumours returned in 2011. You may also know that on January 19th 2011, I had an experience during an on board encounter of being taken by the Teal’hia and the Sar’Won’Dee to merge with THE LIGHT (what I came to think of as God). Some of you may recall also that it has taken me a long time to make sense of and integrate the experience, in much the same way as happens to a person who has a Near Death Experience. I’ve talked a little about this experience in two videos on my YT channel.

What I haven’t spoken about is my frustration with coming back to ordinary life and the feeling of sometimes feeling separated from our / my TRUE HOME. Nor have I spoken about how sometimes I feel the need to reconnect with my experience and to remember and reconnect with the LIGHT. There have been many times since then, when I have had difficulties of one sort or another and I have felt a deep longing for THE LIGHT. There have also been days when I felt completely healed of my tumours and other days when I felt unbelievably burdened by my tumours and long to feel the freedom that I felt when I was no longer a separate body but fully aware that I was ALL.

My ability, willingness and readiness to heal are all connected to my perception and belief. I know how my perception must shift but up to this point, I have been unable to make the shift as a result of some subtle flaw in my perception. Since 2012 I have had a number of conversations with both Dude (Naelsa) and Anamika (Teal’hia) about the nature of God, perception, belief and healing. The following conversation on how to connect with God (and heal) is from a conversation I had with Anamika in 2012. Despite the fact that what she conveyed was logical and obvious, I am still unable to bridge the gap in perception between self and All, such that my illness recedes to the point of being insignificant. One of the reasons that I had a conversation with Anita Moorjani in 2012 was because I was so frustrated coming back to the sense of separation and I was looking for answers to help make sense of my experience in the NDE field. Anita struck me as one of the few people who really understood the nature of tumours as an illness and the only person I know who has had tumours and then an NDE and come back completely healed. I also spoke with Anita because I was keen to see if I was missing something. But I could not sense what was missing – except perhaps the absolute conviction that I AM HEALED. You can see some of the frailties and insecurities that I had about my illness in this interview. Anita and I certainly agree on many things and she has done a lot of hood helping others to understand healing. One thing that is interesting about Anita, is that she does know the essence of healing but she was healed on the verge of dying, which is different to what most people are likely to experience. Anita also, did not get to make the changes she now teaches. Her insights came in hindsight. I would like to have complete insight without getting to the edge of death.

So here’s the conversation that Anamika and I had prior to the interview with Anita :

 

“How can I live without the disease which causes me greatest suffering ? How can I know God, how can I be God and apply that to my healing ?

Know that the desire to be alive, free of the disease which causes you greatest suffering and the desire to know God, are one in the same. You are experiencing God through this life Bright. There is no separation between your experience of this life and the experience of God. You are God experiencing this human life. This sense that you have that you will find God through a greater, a wider perspective is false, is misleading. You know God through your own experience and your own experiences only. There is no need to know a greater experience. If you wish to know God Bright, know yourself fully. Know what it is that you are. When you have entered the place of your purest self, know that this is God. From this and within this, all that you are arises. All of this is also God. But the God that you seek that is beyond everything, is also within you, within this. There is no separation between the God that is within you and the God that is within which everything exists. God is in all things, God is within you. You must know Bright that when you enter yourself, the experience of God within is the same as the experience of God within all things. It is only that you experience God through being a human. God is still the same God, no matter how it is felt. So Bright, if you truly wish to feel God. Experience what you feel within. What you experience in every possible way, is your experience of God. Deep inside you, the purest self is the purest experience of God. Know this and then know God fully. When you experience this, you experience God fully.

Are you telling me that it’s only in silence and in deeply knowing the self such as Maharshi’s teaching “What is it that is asking, “What am I ?” ?”. That the felt experience of that, that we’re knowing God ?

Yes but lose the labels. Yes Bright but know that whatever the felt experience is within is God. When you are silent, you experience God as silence. When there is noise, you experience God as noise. And when there is chaos, you experience God as chaos. And when there is peace – you experience God as peace. Sometimes Bright, it is difficult for humans to sit with the experience that is inside of them. You continue to seek something other than what you are. The purest sense of God is what is inside of you. Not something that you would prefer to have inside of you. Not something that you could seek by continued searching. It is what is inside of you. This is the experience of God. There is no separation between the experience of God and God itself.

Can you please tell me my friend what to do to fully experience God to bring this to healing ? And I know I don’t quite means those words but you will understand what I’m getting at.

Bright, when you sit or lie down or go on your walks, just notice all that is within you. Every experience – all memories, every sensation, every perception of the world within and the world around you. All this constitutes your experience of God. And within this sense, a settled place where there is no movement. This is not the same as silence. This is awareness. Awareness of your true nature – as you would say. There is nothing to do to experience this. Just notice that it exists. It cannot be found by seeking. You cannot find it by continuing your search, no matter who your teacher. When you are aware of it Bright, remember it and come to it. Remember it, whenever you remember to remember it. Whenever you need to remember it. Otherwise simply be aware of all that is within. For all that is within is God.

You are already healed Bright. You simply need to remember what you are. Remember the experience within you. Remember the awareness within your purest self. The awareness of what you really are. Stop seeking, stop struggling, stop wishing, stop desiring. Simply allow that awareness to enter you. With full acceptance of that awareness and all that arises within you, healing will come naturally. You need not do anything Bright. Simply remember who you are, that God is within you. There is no doing to get anywhere, there is no doing to overcome your illness. Simply letting go of the things that have been in the way, by remembering who you are and seeing all that arises. Don’t try to discover anything Bright and don’t try to get anywhere. Just know that it is already within you and that at any moment you can experience it. It is only by remembering that it is there that you will experience anything. Do not be afraid Bright at any moment, just to remember. There is no need to do anything special, just remember. Do you understand now Bright ?

Yes I think so and this is similar to things I’ve understood before but you have a different way of putting it. A simplification if I may.”

 

An Update on My Health (The Polkadot Zebra)

Hey folks, just a quick update on my health. I had a teleconference with my oncologist this morning and learned that one of the key markers for my tumours has doubled in value, which may or may not mean there’s been significant growth in the size of my tumours. It’s never increased that much before ! My oncologist recommend I have another Gatate Scan and commence Lutate Therapy (Radioepeptide treatment) ASAP- which as you’ll recall comes with 2 potentially life threatening side effects. So reluctantly, rather than having a new scan every 18 months (October 2019 for the next one), I’ll be having one next month and looking to see if I can start the treatment I mentioned previously with the minicell technology group in Sydney – who has been doing pioneering research into minicell technology since 2006. As I’ve said on countless occasions, I’m reluctant to have treatment because I still believe in addressing the convergence of root causes but it maybe necessary for me to have some form of aggressive treatment to reduce the size of my tumours and buy me time to make the necessary changes. There will come a point where if my tumours don’t shrink, the game is over ! So I have to do something while I still can. The hardest thing has been figuring out the right thing to do and I do not feel that following the standard model of treatment is going to be beneficial for me. Nor do I feel that following any kind of alternative health approach will provide me with any benefit, as I’ve talked about countless times before.

I think of the body as a complex system and tumours as a reaction to a number of mental, emotional or physical factors that have converged to change the way that the body system functions. You can change the entire system by changing the factors (root causes) that cause the reaction (tumours). It can take a long time to develop that factors that cause the development of tumours and an equally long time to change the same factors. Some people have the time and some people don’t. In my case there are half a dozen or so factors that I’m still struggling to change. Most of them are long term behaviours that are so entrenched that I often forget that I’m doing them. So in part, healing requires constant vigilance and self awareness. However that’s only part of the picture. I am also healed and need to maintain a perpetual awareness of this, even when my body is in pain. Remembering the different aspects of self – the ordinary suffering aspects and the transcendent whole which is beyond all sense of bodily limitation. And that can be difficult at times.

The people who are close to me feel much like I do – that I’m on a slow boat to China and they worry that I’ll die of this disease in the next few years, although they rarely acknowledge that they feel that way. I regularly consider the possibility but I don’t believe that that is what will happen. I do get frustrated though knowing that no matter how much effort I make to change how I function, I still have tumours. It seems that I am both ignorant on a regular basis of already being healed and the totality of my being and that I am ignorant of my own behaviours – even when I know that they make me sick. I believe that I am a fairly well balanced kind of person and that I try to live in a harmonious way but every person has a unique set of behaviours (mental, emotional and outward) that determine how their bodies function. My body is particularly sensitive to any extremes I impose upon it, which is why things like working too hard physically or spending too much time sitting down or having too much screen time or too much conflict with my son, are particularly bad for my health.

So next month it’s back on the treadmill. First off, I’m off to see a new endocrinologist to have another battery of tests to find out what hormones my tumours are secreting and why my blood glucose is fluctuating so wildly. I don’t think this will yield anything particularly useful but maybe it will ! Then I’m off for my Gatate Scan to find out how much my tumours have changed and then a few days later I’ll have a teleconference with my former oncologist. In the meantime I’ll investigate how I can access the treatment with the Sydney group and talk to my GP about getting that ball rolling. So it may mean starting treatment soon or maybe a little later. I’m not sure.

During this time I will also be doing a lot more Internal Worlds work with my body (I don’t think I have ever mentioned this topic before but it’s another application of working with an internal world). And I’ll also be working with some methods that Dude has taught me that are similar in nature to Eugene Gendlin’s Focusing work. In addition to these particular doing activities I’ll be spending a lot of time doing nothing and enjoying stillness because stillness is really the key to good health.

If I could leave you with one thing it would be this. Don’t make excuses for why your lives are miserable (if they are miserable). Don’t put the responsibility for your misery on anyone but yourself. Pull your finger out and make the changes that will improve your life. Don’t wait for some hereafter when you believe that everything will be perfect. Make life what you want it to be right now. Love life and make the most of it because every moment that you are flesh is precious. Feel everything and accept everything. Find joy in as much of your day as possible !

You can read more on what I have learned here : https://etandi.wordpress.com/2015/03/28/lessons-learned-from-a-life-threatening-empowering-illnesss/.

Be well and rock on People of Earth,

Brighty. 😉

 

An Update on My Health

 

Hey folks, how’s life ?

Last night was a turning point in my health. I woke up at 5 am with excruciating abdominal cramps, dragged myself to the toilet where I spent 30 minutes with some of the worst pain I’ve ever experienced. I broke out in a hot sweat, felt like I might throw up and pass out on the toilet floor, where I might shit myself into oblivion. After the most painful slugs I’ve ever given birth to and a never ending drip of ooze, I began shivering and went back to bed. After 14 months of monthly injections of Lanroetide LAR in my butt, I decided in the twilight hours of the morning that enough is enough ! The side effects of this drug far outweigh whatever benefits it has. I’m fortunate enough to pay just $3 per injection for a drug that costs between $2,500-$3,000 in Australia and $7,000 in the US. The government subsidy makes this super expensive drug affordable. However no matter how fortunate I am, this drug just isn’t for me !

I had been living with renal carcinoid tumours for 10 years before I decided to accept treatment and at that point I had 2 options and an option that was a possibility. The first option was Lutate Therapy – which involves the use of a radiopeptide. It came with a small risk of renal failure (which didn’t appeal to me having just 1 kidney) and an acute form of leukaemia. The potential side effects of this treatment in the long term are not yet known. The supposedly easy option, that was referred to as the ‘ace up my sleeve’ by one specialist, was Lanreotide LAR. The other potential option was a form of minicell treatment which delivers microscopic amounts of anti tumour drugs and microRNA to tumour cells. I discovered at the last minute that the group running trials in this treatment, would only consider me when all my other options had run out, i.e. when I was at death’s door ! There is no guarantee that minicell treatment would be effective but I thought the approach they used sounded promising. In addition to these 3 treatments I had been told about a number of immunotherapy /platelet therapy treatments that were in the pipeline at various institutions around the country by Dude and my guide Kanatek.

Dude had encouraged me to stay on L LAR for 18 months if I could but had said on several occasions that I needed to constantly evaluate how things were going. The dozen or so side effects that I suffer from with the drug (many of which I had previously as a result of Carcinoid Syndrome and it was supposed to alleviate) are making life unbearable. I only stayed on the drug because it has been shown to reduce the size of tumours ad I felt that some reduction in tumour size would help in my overall recovery and minimise the negative impacts of Carcinoid Syndrome on my body.

I’ve never been a fat person but I’ve been walking around for almost a year with what feels like a Homer Simpson gut due to abdominal swelling / bloating and it’s the most uncomfortable thing to feel your tumours hurting and like you’ll explode at any time in the night or day. In addition I used to be able to manage my hypoglycemia but now it is almost unmanageable and after being fucked around constantly by endocrinologists, I feel like no one has a fucking clue what my tumours are doing to my body. I can’t go 3 hours without needing to eat or rest. And some days I fee like I’m close to falling into a coma. Glucose and sugar related foods do nothing to alleviate the problem and the only thing that helps is red meat because my body seems to depend on the gluconeogenesis pathway more than the glycolysis pathway. In other words it gains energy from amino acids instead of glucose. Something is going on in relation to the hormones that my body is secreting, that no one understands. Dude has told me that several of the hormones are hormones that we humans have not yet discovered. Which is great to know but it doesn’t help me to find a solution !

On the plus side, Dude’s and Kanatek’s help, has been fantastic but now matter how much help I receive, it has been impossible to alleviate the major side effects of this bloody drug !

Today I was supposed to go in and have my second minor toe surgery (1 rear corner on my big toe) but I felt too sick and had to cancel. Which means another month of hobbling around ! Right now it’s very much a woe is me situation ! But this too will pass in a couple of hours !

If another person suggests another black box alternative therapy to me, I’ll punch them in the face ! I am soooooooo over all these alternative suggestions from people who have never had or outlived tumours by several decades ! They have no fucking idea !

So yeah, I’m a little pissed off. I’m tired now and I’ve tried my best ! Some days I have moments when I feel a little like my sister did when she realised the game was over and that her tumours would kill her.

Where to now ? Well, it will take at least 6 months for this drug to be out of my system. I have 14 3-4 cm hard lumps in my backside and abdomen from the injections. Side effects that were supposed to be pea size and last a week at most. Once the drug is completely out of my system the side effects should subside. I need to have another Gallium 68 PET scan in a few months to see if the drug had any impact. I’ve been handed over to a new oncologist, as the old one has been moved on to another department. No doubt, the new one will try to convince me to have surgery as the last one did. If she ignores what I say she can go fuck her self !

Once I know if the drug has had any impact on my tumours I can make some decisions. In the meantime I’m going back to scratch to look at all my options. I may or may not see a private endocrinologist. That’s going to cost a lot of money but it will be worth it if I can find the right person. Alternatively I may say fuck the lot of them and refuse to go back and see anyone – including the oncologist ! I may also consider approaching the company in Sydney (NSW) who is running the minicell trials again. There is a group in Adelaide (South Australia), who are doing interesting things with a novel form of treatment and I plan on visiting them when I am well enough to travel. But most importantly I am going to continue doing what Dude and Kanatek tell me. I was instructed by the Teal’hia in 2011 to follow Kanatek’s suggestions closely and I’ve been a bit of a slack arse when it comes to maintaining the degree of diligence and discipline that he has suggested is necessary to heal completely. I also plan on spending a lot more time in contact with our local creek – which has very strong energy as a result of the mineral rich sands in it and the hundreds of River Red Gum trees. The critical thing, which I still believe matters most is that I attend to the root causes of this disease, allow myself to feel healed and have the right attitude towards treatment. I’ve had tumours disappear before and I know what works but I have some very bad habits that have been very difficult to change. I know that tumours are merely a reaction to how one lives and that all tumours result from a convergence of root causes. Alternative therapies and western medicine don’t address these. Sometimes they can help shrink tumours but they can’t stop them coming back. Only a radical shift in belief and how one feels in addition to addressing root causes can do that.

Life is otherwise perfect, complete with it’s many varied challenges ! I miss having a completely healthy and fit body and while I can never go back to what I once was, I look forward to experiencing life without this particular drug in my body ! I am convinced that more people die of so called ‘health promotion’ and alternative and western treatments than if they were to know nothing about their illnesses or have no treatment at all.

In 2 months time it will be 12 years since my initial diagnosis. Most people with this disease are dead by now or have had years of treatment and are often not in good shape. I feel blessed that I have outlived all the doom and gloom prognoses. To be given a diagnosis of tumours (or in the popular language of western culture – “Cancer”), is to be given an opportunity to seize the day and live as fully as possible ! My sister Susy had just 11 months knowing she had brain tumours before she died. How fortunate am I that I can still grace this Earth with my presence ! And that I have the opportunity to do so much good and be so annoying to the people I like annoying !

Thank you to everyone who has supported me financially and thank you to everyone who has supported all my work. You all know who you are ! Without you, there would be know ET and I or The Something Monologues. And a huge thank you to the person who gave so selflessly with my recent fundraiser. Your kindness had a profound impact on my life and came at a moment when this little man most needed financial help !

Alas, writing always seems to make everything better. Now that I’ve gotten this far I feel a little silly for complaining so much ! Whenever I have a shitty time like I have this last 2 months, I remind myself that I have so much to live for ! I have a beautiful 19 year old son who makes me very proud and today he has gone to Cosplay Kylo Ren with his friends. I have countless birds to enjoy ! Birds that surround the house, birds that live in the paddocks and along the creek. Birds everywhere. Always talking and singing and bringing me endless pleasure. I have met and spoken to my sister who died and I now know how her journey is unfolding and that she’s OK. That makes me feel better about what happened to her. I am surrounded by countless trees that I planted and feel great pride in the forest that I have created. I have a small body of work in ET and I and The Something Monologues, which I think may contribute a little to making the human world a better place. And I see much good that I can continue creating. I have a car and the opportunity to travel to the local hills, the mountains and the coast where I used to live. I have relationships with ETs and the Hairy Folk. I have an intimate relationship with Dude and Anamika, for which I am so grateful ! I have 3 new friends on opposite side of the worlds, with whom I love corresponding and hearing about their lives. And above all, I have freedom. The freedom to breathe fresh air, the freedom to live how I wish to live and to make my own choices. No matter how long I live, to have known freedom has been the greatest joy.

And now I choose to go outside and lay among the towering River Red Gums in the dry creek bed and bath in the rays of the sun and listen to Magpies singing.

 

TSM145 : The Cancer Personality

Last Thursday and Friday I had a follow-up visit to the hospital where I have my treatment and scans. On the Friday, with several hours of free time, I decided to make a commentary about the people I was observing and what I think of as The Cancer Personality. This is an idea I’ve been exploring for more than a decade and an observation that I may have made about my self once upon a time ! You may think I’m judgemental in my comments and that was certainly not my intention. Of course I know nothing about the suffering, resilience, hopes, desires or struggles of the people I observed. What follows is my observations as a writer and as a human being who has taken a similar, albeit different journey.

Distinctive personalities might be found in any number of acute and chronic illnesses. My guess is that certain constellations of physical, psychological and emotional traits and experiences, might one day be found to align well with certain illnesses.

• https://thesomethingmonologues.podbean.com/e/tsm145-the-cancer-personality/
• https://app.box.com/s/wlnscvi613b3e6oug6si.

 

An Update on My Health

Hey folks, I have just been to Peter Mac Cancer Hospital for two days, where I had my latest blood tests, Gatate Scan and consult. The good news is that after 6 months of treatment, my tumours have at last stopped growing, if not, shrunk a little (my nuclear medicine doc was pretty confident that it had shrunk a little but said his measurement was slightly different to the last measurement). My doctor does not want me to have another scan for 12 month. Every new PET Scan (which has a CT scan component) adds to the cumulative radiation my body has had to cope with – so one scan a year is great news ! At this point I will continue with the injections I’ve been having, rather than proceeding with the more aggressive treatment (which is both dangerous to my one kidney and has a 2 % risk of creating a form of leukaemia). I’ll give the injections another year, which means I’ll have to put up with more hypoglycemia, bloating, palpitations, full body and half twitches, memory problems, sluggish poop, risk of gall bladder kicking the bucket (working to prevent that with daily massages) and other miscellaneous side effects. It’s not absolutely clear that the injections are what has slowed my tumours. It may well be the other changes I’ve made in how I function or perhaps my tumours are going through a slow growth period ! But I’m confident that both the treatment and what I’m doing are making a difference. The challenge for the next year will be coping with the side effects and feeling healed, which is at times very difficult to feel because this drug is so damned nasty ! But I am alive right now – enjoying my life and I am very, very grateful that I’ve had more than a decade to make the most of what I have !

In the next 12 months I’ll also be looking into some new treatments that I know are on the horizon. Some of you may remember my story about the Teal’hia visiting us in 1997 and telling Rachel about a new form of tumour treatment and the dreams I had about Minicells, in relation to a particular company who are developing this technology. If I absolutely have to consider having treatment, I’m keen to follow up with the things I was told about and to reconnect with the company who were willing to consider treating me, once I had exhausted all other options. Now that I’m having significant side effects on my current treatment and the other one is considered dangerous, they may reconsider.

I’m blessed to have come a long way from here : https://gogetfunding.com/a-tumour-called-freedom/ ! At different times in the last decade, I’ve been pretty sick and I’m so glad I trusted my instincts and did what I felt I needed to do. I refused surgery because I felt it would kill me, although the doctors thought I was crazy ! And I said no to many other things because I didn’t believe that they would help !

One day perhaps I will write a book about the experience of living with tumours. And in it I will attack western medicine and alternative medicine equally, big pharma and almost every attitude that society has to illness. Illness hasn’t made me a kinder, gentler person. It’s made me angrier and angrier about how we treat one another as human beings. There are days when I get very upset with man’s attitude to illness (among many other things) and I have to remind myself of the things that were shared with  me … https://etandi.wordpress.com/page/2/?s=tumours.  Losing my sister Susy to Brain Tumours in February forced me to look very carefully at how we human beings function and societies attitude to illness. I’ll verbally assassinate the next person who suggests I try Bicarb Soda, after seeing what it did to my sister ! So called alternative treatments (black box ideologies) will be a major target in any book I write about my experience of illness.

Anyway, I’m here and that’s all that matters ! I’m stuck in a world where 99.9 % of people will never understand where I’m coming from in relation to illness and our myopic attitudes to living fully ! Perhaps the only thing I can do, is to impart what I’ve learned !

If I’ve learned just one thing, it’s this – It’s our attitude to whatever treatment we choose, that matters most and makes the greatest difference. Attitude creates belief, belief creates feeling, feeling creates disharmony or harmony, disease or healing.

Thanks for sticking by me !

Give me a few days to recover and then I’ll try to catch up on responding to your comments !

Best wishes to all,

Bright. 😉

PS. Little Sun are you OK ?

 

A Tumour Called Freedom Update

Hey folks, how’s life ???

Last month I had my latest Gallium 68 PET scan to find out exactly how my tumours are going. I made the video below on the day of my scan ! You can see the results in the pics below. The glowing or dark images are mostly tumours. My tumours have increased in size by about 55 % over the last 5 years. and now reach from my left adrenal gland to just above the Aortic bifurication. There are no tumours in any organs and several tumours seem to have dissapeared. Which is a good result from my perspective. But I still have tumours and they have grown and are now causing me considerable discomfort and secondary problems as a result of the hormones they secrete. The pressure on my Aorta is causing all kinds of circulation problems and is really very uncomfortable. I have to admit that I am a little tired of my tumours after almost 10 years.

Last week I visited my oncologist to begin planning my radiopeptide treatment and she surprised me by saying ‘I think you should have surgery’. I immediately had the most powerful visceral reaction that I’ve ever had and I told her so ! I then explained that I raised the issue with my former oncologist 5 years ago, who had said, ‘I don’t know anyone who would risk it !’. I showed her an old report that showed that my largest tumour is half wrapped around my descending Aorta and said that I thought the risk was too great and that I just didn’t want to have more surgery (as I’ve had 3 major surgeries and 2 minor surgeries already) as it has significantly effected my flexibility, mobility and quality of life. Anyway, we belted it around for a while and then she dragged in the Renal Surgeon, who said, ‘Yeah we could probably do that but there are significant risks’. Tell me about it ! Risks like dying, like injuring circulation to my legs or lower organs, like nicking a nerve and fucking up an organ ! So my oncologist was all for it and I was cold on the whole thing. The surgical team is going to discuss it this week but I will be saying no and plan on going ahead with radioactive Lutate Therapy.

I meet next week with my oncologist and an endocrinologist, to make a final decision and will probably meet with the Nuclear Medicine Radiologists the following week for final planning. That should mean treatment starts by mid February ! I’ll be so happy to see a start date !

I am otherwise much better than I was and am looking forward to taking my son down the coast for his 18th birthday and swimming in the ocean and snorkelling in some deep aquifers !

If you’d like to help with the fundraiser, you can do so here https://gogetfunding.com/a-tumour-called-freedom/ or via the tab on the right (which has smaller fees).

Thanks to everyone who has supported me thus far !

I have started recording the How to Make ET contact audio but how long it takes will depend on my appointments and when treatment starts. Most of my projects are moving along very slowly right now, pending feeling OK and the result of treatment.

For my part, it’s no expectation, whatever happens happens !

Take care friends,

Bright. 😉

 

 

A Tumour Called Freedom Fundraiser

Hey folks, here’s the fundraiser I’ve set up to help with my coming treatment. If you can’t help, please consider sharing through your networks. I’ll be offline after this Sunday for the next 2 months, so my son will be keeping tabs on the fundraiser and providing updates here and there. I’ll try to make a record of my treatment and post those at some later date. I need to have my body as strong as possible during the initial phases of treatment, as it will be exposed to high levels of radio peptides. Which means I need to shift my focus entirely away from the internet and spend lots of time outside. If only I can get rid of the millions of mosquitoes living in the long grass !

https://gogetfunding.com/a-tumour-called-freedom/

A few more posts will follow before the end of the week.

Please do vote America, even if it’s all pre-ordained. Don’t let the efforts that went into fighting for the vote be in vain. Exercise your sense of participatory democracy. It’s something that many people in other countries yearn for ! Make your vote count, even if America ends up with a she donkey !