Creating my own Hope

I was taken to Hamilton hospital mid December 2007 aged 45 due to having a grand mal seizure or fit. CT scan confirmed my fears of a brain tumour, 2.5 cm in the left parietal lobe. I had previously experienced a few discreet episodes of having difficulty talking and reading and the tumour was located in the part of my brain used for language. The tumour was situated near the surface of my brain so surgery was an option and I accepted this course of action without hesitation. Surgery was performed at the Hamilton Neurological unit in early January 2008 and I was out of the ward and recovering at home within 3 days of the operation.

The bad news came about two weeks later when the pathologist came home from his summer holidays, examined my slides and determined that I had glioma multiforme blastoma grade four.

Within the medical literature glioma multiforme blastoma (gmb) is referred to as 'malignant and aggressive' 'grim' and 'inevitably fatal'. The statistical data we accessed gave a 10% chance of surviving 2 years, and that was with the 'gold standard' treatment.

I didn't really want to go and see the surgeon and have confirmed what I already knew but I went and it was not an uplifting experience. After reiterating the statistics that I could expect a 10% chance of surviving two years the surgeon tried to be as uplifting as he could be given the circumstances; he said, 'I know people who have lived with this disease for years.' then he thought a bit and added, 'Well actually, one person and it was two years.' I was full of bravado so I said, 'Well, it's my intention to survive this 100%' and he replied that he didn't want to give me false hope. This was where I realised my hope was my responsibility and that I would have to be the one making choices about my treatment and the possible outcomes of that treatment.

Over the next few months I began to explore the truly amazing phenomena of the alternative cancer treatment bonanza that is available on the internet.

I explored diets and alternate modes of treatment; I read stories of cancer survivors and the tragic stories of the many that didn't make it. I read of miracle cures and I read the newspaper reports of practitioners of miracle cures being arrested when their patients died in hotel rooms in Bangkok (of course these patients had already been abandoned by their conventional doctors after extensive and possible destructive treatments had already failed)

If you have spent any time researching this for yourself, and I bet you have, then you will no doubt have noticed that nearly everybody thinks they alone posses the truth about cancer (or any other dread disease) and that those who profess alternate viewpoints are not just wrong but most likely motivated by greed or evil intent.

Conventional medical doctors discredit alternative practices and they in turn accuse the MD's of being short-sighted, narrow minded, ignorant and in the pockets of pharmaceutical firms.

Further, if you are to believe the rhetoric, these firms and medical organisations actively suppress cures for cancer that are effective and inexpensive precisely because they are effective and inexpensive!

What to believe? This was the question. Should I follow the usual path of conventional oncology and back up my surgery with a course of radiotherapy and then chemotherapy? Actually I wasn't that keen, especially as the scientific and statistical data gave me only a 10% chance of surviving this for very long at all. I was really questioning why I should put myself through it.

I have always considered allopathic medicine to be more about the disease and the drug than the patient and the cure (and their ability to heal themselves) I was also of the opinion that chemotherapy and radiation are a sledge hammer approach.

My resistance to these treatments was added to after reading the 'cancer survivor' stories of others who had managed to clock up a few years of life with gmb. Although they were alive after periods of five, ten and in one case even 30 years after initial diagnosis, their stories indicated continual medical intervention, reoccurrences of tumour growth, resections, debulkings and multiple courses of chemotherapy. Was this quality of life?

Incidentally the woman reporting a 30 year survival rate had a history free from recurrence and gave her faith in God the credit for her fortuitous recovery!

Should I perhaps eschew conventional treatments, described as slash, burn and poison by the more embittered promoters of alternate regimes?

I had already taken the slash option (surgery) and felt better for it. (Perhaps if I hadn't been dealing with a brain tumour I would have been slower to opt for surgery but from where I am standing now I am certainly glad I did, I doubt I would have survived the time it takes to research other options and make a sensible decision.)

It seems that most people go for the standard treatments as offered by their doctors and health authorities and only turn to alternatives after these treatments fail (if they fail). By then, our hypothetical cancer sufferer has been told that there is no hope, their cancer has advanced to a near terminal stage and their body has been weakened by the radiation and chemotherapy treatments - not an ideal state to be in to begin an alternative cure regime.

I reasoned that I would be better off finding an effective alternative while I was still healthy, with my immune system uncompromised by chemotherapy and my brain un-irradiated, but still I was faced with the problem of what to believe.

I could opt for a homeopathic treatment that was reporting an 80% cure rate for gmb (even grade 4) but I had never really put much faith in homeopathy before, though I wasn't against it. I could try ayurvedic treatments as promoted by a practitioner I knew and Dr. Deepak Chopra whose books I respected. I could change my diet, but how; macrobiotic, organic, alkaline, raw food, vegetarian, vegan? Perhaps a combination; halal organic vegetarian?

But how would I get my omega3 fish oil? How would diets combine with the treatments; the homeopathy requires no onions or sour foods?

Should I go for the all grape juice diet? Carrot juice is good. What about apricot kernels? They are banned in the U.S. but used in cancer clinics in Japan and Europe. Had I considered acupuncture?

Friends and family helpfully compounded the issue by bringing me their favourite remedies; my shelves bulged with fennel tea (cleansing), Tibetan gogi juice (good for everything), Himalayan salt (pink and salty) and strange contraptions that supposedly alter the electric and magnetic radiation within the house.

My poor brain was in confusion. What is the truth about cancer, the medical industry and the alternative cures? Is there even a truth? Were there perhaps many truths? Each therapy or cure was supported with either clinical studies or personal stories of diseases cured. What was the common thread through the morass of information, accusations, claims and counter claims?

Then it became clear to me: everybody believed in their cure, or they believed in their practitioner, or they believed in the power of their saviour. The common thread was belief!

It didn't really matter what avenue I chose to peruse for my healing as long as I believed it was the right one. Taking this a little further I wondered; if belief appears to be the main component of a cure then why choose to believe in anything external at all? Could I have enough belief, ie absolute faith, in myself, my will to live and the healing properties of my body to create a cure without reliance on any diet, therapy or substance?

On reflection I realised that even though I have been studying and practicing Avatar for 8 years (Avatar is a system of living deliberately and creating beliefs from source) I realised I didn't yet have the courage and faith in myself to take this leap.

I have previously managed to self-cure headaches, strained muscles and other minor ailments through the power of my will but brain cancer? There would be no second chance.

So I decided to put my belief into the Homeopathy option (I liked that they actually had a published study in a medical journal, evidence is so seductive). I would back that up with herbal supplements of amygdaline, selenium and omega3 (also the fennel tea was quite nice, the gogi was revolting but worth a try!).

Now there was just the problem of what to say to my wife and my oncologist. Stephanie is a registered nurse and has faith in the medical system. From her viewpoint my decision was stupid and unscientific and just confirmed for her that I was soon to be buried.

Since my diagnosis Steph had also been doing research, consulting with her medical colleagues and reading medical journal articles and they were not inspiring. One of her colleagues had even suggested that the best thing I could do was to get a doctor to write an affidavit that my condition was terminal so I could draw down my life insurance and then spend it having a bit of fun while I could! I didn't like this idea much because the agreement would require me to die in a timely way.

So we had a lot to talk about and it wasn't easy but by the time we were due to see the oncologist I had made my decision clear and Steph was prepared to support me; I would try the alternative approach first and fall back on the orthodox treatments if there was evidence of a recurrence.

The difficulty was explaining this to my oncologist, not that he wasn't understanding or supportive, he was. What I found difficult was maintaining my viewpoint in a formal medical setting to a doctor and in the presence of my wife, a nurse. Suddenly I found it hard to maintain my faith in my chosen course of action. How could I say no to medical science and best practice? I suddenly felt like my fourteen year-old self trying to explain to the school's deputy principal why I shouldn't have to do sports (I ended up having to do sports).

Then the doctor upped the ante by presenting me with new data; a recent study which showed a 50% survival rate at two years for patients with similar conditions to mine (successful removal of tumour, no deficits, relatively young) and I began to get persuaded. Still I stuck to my original decision and my doctor agreed to support me with regular CT scans to check for tumour recurrence even though he thought it was not the best approach (Steph had walked out of the interview by this time)

I left feeling initially that I had made a stand for my health but the further I got from the hospital the worse I felt, I began to feel I had made a big mistake. I sat down with Steph in a nearby park and asked myself, 'Why do I feel bad about this decision?' Then I realised I just wanted to be right. I had a prejudice against the treatments and didn't want to change my mind about them. So I changed my mind and went back to the oncologist and signed up for 30 days of radiotherapy concurrent with daily chemotherapy (Tomodal or Temozolomide) followed by 6 months of further chemotherapy treatments.

The initial 30 day regime was a major disturbance to my life but otherwise uneventful, except that I lost patches of hair due to the radiotherapy and became a bit depressed and tired by the end of it. I responded to the chemotherapy initially with intense nausea but this lessened in intensity and there was a period of exhaustion that kicked in about 6 weeks after the radiotherapy treatment.

At this time of writing I still have 3 months of chemo to go, my hair is growing back and I still have no sign of any deficit or tumour reoccurrence though I will not be having a brain CT scan for some months so as to let the effects of the surgery and radiation to the brain subside.

Meanwhile I am saving the alternative medications as back-up and will commence the homeopathic and herbal remedies once I am finished with the chemo.

In this description I have hardly touched on the mental and spiritual aspect of this time of my life, I will say though that I used all the tools at my disposal to manage my state so I was as honest and real as I could be with what I was feeling and my responses. There were times when I resisted and denied my condition, times when I felt depressed and hopeless and times when I was irritable and unpleasant, but overall, this experience has brought me to a great appreciation of my life and for the people in my life.

I feel the most important aspect of my healing is the changing of the beliefs and attitudes I hold that could exert a negative influence on my will to live and chances of survival. I am confident that if I keep practicing a deep level of self awareness and honesty, keep putting my attention on a positive outcome and devote my energy to the service of others then I will survive, happily, for many years to come. And if I don't, well at least I'll have been spending my time and energy to best advantage and not been feeling miserable and sorry for myself.

Update 24/12/2008

Well it's been a year since my seizure and diagnosis and what a year! I am now finished with allopathic treatment, they can't give me any more radiation and there's no funding available for another course of chemotherapy. I don't think I would take any even if there was. The good news is that I don't have any indication I need any more treatment anyway.

I had an MRI in late October and its findings were inconclusive, which I expected as my oncologist had been telling me for months that they would be. Also, as this was the first post-surgery MRI, there was no previous data to compare it to. The results did show some enhancement in my brain in the area of the previous tumour but there's no telling if this indicates tumour or just scar tissue or healing activity from the radiation etc. I will be having another MRI in January and then there will be the possibility of comparing the two scans to produce more useful data. I'm expecting to see a reduction in the area of enhancement!

Physically I'm feeling pretty good. I still seem to get tired easily but I have gained the muscle mass that I lost during the radio/chemo regime and have been doing quite a bit of physical work. Mentally I sometimes find myself a bit forgetful and have difficulty finding words. Although this is not unusual I do sometimes think it is a deficit from the tumour surgery or treatment, but it's very mild.

When I was undergoing surgery back at the beginning of the year I met three men who were also having surgery for brain tumours and, sadly, they are now all dead from their cancer. As well as the sadness of losing friends, this has also been hard to handle as it reminds me of the seriousness of my condition and doesn't allow me the benefits of being in denial. Brain cancer kills people.

That I am so well, both physically and mentally is a blessing which I am so thankful for. I have no indication I have any cancer or that my life is threatened so I am sustaining the belief I will survive this for many years yet.

I am currently taking a course of homeopathic treatments for gmb though I can't say I am experiencing any definite effects from the medication, possibly an improvement in energy levels, though I did notice them being effective at the occasional times I was experiencing headache and nausea. (but we know the effectiveness of placebos!) These homeopathic medicines are supported by some very interesting clinical data and report a good success rate with lots of cancers including gmb.

Life for Stephanie, our daughters Rose and Ruby and me has settled down now and we are all getting used to the idea I'm not about to suddenly die. In fact we are all looking forward to an uneventful year.

I recently led a Healing Empowerment Workshop at a local retreat centre. The workshop focused on the power of beliefs in healing and dealing with fear and identities. I had seven attendees and they found the day very useful and had some helpful insights into the beliefs they had about their sickness or healing.

I intend to go to Florida for two weeks this February to participate in the Avatar Wizards course. I feel very strongly this will help me in my resolve to survive and will really clarify some remaining issues. My intention on the course is to gain clarity around my identities which would create a life-threatening illness and align my will to creating certainty in my belief in myself. I notice that sometimes I'm still not doing everything I know I could do to promote my wellbeing so I still have some intentions I need to deal with.

Update 22 January 2009

Good news, I had another MRI and it showed significant improvement on the previous scan in October. Whatever the area of enhancement is, it's getting smaller, so I'm confident it's not tumour. I was going to wait until my result came through before buying my air ticket to Florida but I actually went ahead and bought the ticket two days before the result, on the belief there would be no evidence of cancer.

We are all feeling so relieved about this result, it has lifted the cloud of doubt and fear that has always been hovering around any thoughts of our future. Apart from my continuing health, and being alive when so many gmb sufferers die in the first year, this is the first medical con-firmation my treatments are being effective.

Of course, I can't determine if my good health is because of the allo-pathic treatment, the homeopathic treatment, my belief management and visualisations or because I'm lucky but who cares? I'm not con-ducting a scientific experiment, I'm striving to survive.

From "You Don't Have to Die When Your Doctor Says" www.survivecancer.info