A Blood Test and Support Group Gathering

First, I threatened to write about the blood tests I am having to monitor my cancer. So, here is one:-

Circulating Tumour Cells (CTC) Test

Wikipedia describes CTC's as;

 ...cells that have shed into the vasculature from a primary tumor and circulate in the bloodstream. CTCs thus constitute seeds for subsequent growth of additional tumors (metastasis) in vital distant organs, triggering a mechanism that is responsible for the vast majority of cancer-related deaths.

I was being over-optimistic when I wrote about my CTC test result. Prof Avni was trying to keep me positive. My count had gone UP considerable. The good thing is that my body can "kill" these cells.

The Mayo Clinic says this:

The CellSearch Circulating Tumor Cell (CTC) test is a simple blood test that helps oncologists in assessing the prognosis of patients with metastatic breast, colorectal, or prostate cancer. The CellSearch test is the only FDA-approved test for CTC assessment. 

The good news is that we all have Natural Killer Cells:

Natural killer cells or NK cells are a type of cytotoxic lymphocyte critical to the innate immune system (Wikipedia).

So, how to boost our Natural Killer cells?
  Eat mushrooms, probiotics (fermented foods and yoghurt) etc. According to an American Integrative Oncologist, we need to do more than eat particular food. Again, it is the holistic thing, so in addition to my diet and exercise, it is that stress management again.

This blood test is not known to all doctors in Australia, but is accepted and covered by insurance in some other countries. The purpose is to monitor the number of tumour cells floating around in one's blood and then to do something about it if it is getting worse.

Another comforting thought for me is this. I was told that an eminent doctor in Sydney who has cancer himself said that natural medicine is slower than drugs. It is normal for results in the first 6 months to be worse, to begin to improve in the next 6 months and thereafter to be back to normal. I am clinging to this idea.

Support Group

Yesterday, I attended a "Cancer Pamper Day" at Mt Beauty. It is usually a day of sharing and being pampered. It was spoilt somewhat yesterday as one of the ladies has been told that her breast cancer has spread to her bones. She had the initial breast cancer 2 years ago. We were all very upset for her, but it is also a sobering reminder of the character of this disease. Need I say more.

Examples of nutrient compounds with anticancer activity on the regulatory proteins/receptors above:

• Inhibition of NF-kB: (resveratrol, curcumin, EGCG, isoflavones, omega-3 fatty acids, vitamin D3, pomegranate extract, ashwagandha, gingerol, milk thistle, lycopene)
• Reduction in 5-LOX: (omega-3 fatty acids, boswellia extract/AKBA, curcumin, lycopene)
• Inhibition of Ras: (curcumin, limonene, vitamin E, garlic extract/diallyl sulfide)
• Reduction in COX-2: (omega-3 fatty acids, berberine, feverfew, gingerol, EGCG, curcumin, resveratrol, milk thistle, gamma tocopherol)
• Inhibition of Caspases: (cucumin)
• Inhibition of PARP: (curcumin)
• Inhibition of AMPK: (curcumin)
• Inhibition of Galectin-3: (modified citrus pectin)
• Inhibition of E-selectin: (alpha-linolenic acid, omega-3 fatty acids)Inhibition of NF-kB: (resveratrol, curcumin, EGCG, isoflavones, omega-3 fatty acids, vitamin D3, pomegranate extract, ashwagandha, gingerol, milk thistle, lycopene) Reduction in 5-LOX: (omega-3 fatty acids, boswellia extract/AKBA, curcumin, lycopene) Inhibition of Ras: (curcumin, limonene, vitamin E, garlic extract/diallyl sulfide) Reduction in COX-2: (omega-3 fatty acids, berberine, feverfew, gingerol, EGCG, curcumin, resveratrol, milk thistle, gamma tocopherol) Inhibition of Caspases: (cucumin) Inhibition of PARP: (curcumin) Inhibition of AMPK: (curcumin) Inhibition of Galectin-3: (modified citrus pectin) Inhibition of E-selectin: (alpha-linolenic acid, omega-3 fatty acids - See more at: http://www.integrativeoncology-essentials.com/2012/08/food-as-chemo/#sthash.G556uqEc.dpuf

Tests: Mammogram versus Thermogram

So here is the first of the promised blogs on tests.

All tests are stressful. So which ones are useful for me?

Types offered: mammogram, x-ray, ultrasound, various blood tests

Things to be considered are their effectiveness, their possible side effects, their accuracy, what they tell us. Information is hard to get and often biased or unreliable. It's possible that the bias comes from who is promoting what, such as big rich companies.
       There are relatively new tests, so research is still coming, although I was surprised to read that one so-called new test was being used in the 1950's.

I have decided to rely on Thermography, Circulating Tumour Cells blood tests and Live Blood tests. I am refusing mammograms, ultrasounds and x-rays. Now this is a bit alternative, but I have not made this decision lightly.

Thermography

This is from one thing I have read. It is a quotation from Kennedy  & Sealy.

There is no one screening tool currently available that
provides 100% predictability of the presence of a cancer-
ous tumor. The only definitive diagnostic tool is a biopsy.
In the past 30 years there have been numerous studies
that have demonstrated thermography to have the ability
to detect breast abnormalities that other screening meth-
ods may not have identified (Kennedy & Seely, 2009) .

Apparently, there are good machines (Russian) and other less effective ones. Here is a link to more information   Again, knowing what is promoted mainly in order to make money is a difficult skill. However, thermography has no known bad affects on our body.

Mammograms

There is as much information against mammograms as there is for them. Australia seems to be the biggest promoter of them. I am told there is a great amount of Government investment in the machines. I am not going to give you links to the promoters as you can find these easily. Here are a few that are critical of mammograms.

Your Greatest Weapon Against Breast Cancer (not Mammograms).

Screening mammograms do more harm than good 

A google search

 And here are some academic resources:

 Gotzsche, Peter C. (2012). Mammography screening: Truth, lies and controversy, London: Radcliffe Publishing.

Gotzsche, Peter C, & Olsen, O. (2000). is screening for breast cancer with mammography justifiable? The Lancet, 355(January 8, 2000), 129-134. 

All of our Australian Cancer organisations promote mammograms so it is scary to go against them. However, I do know a lady whose three episodes of breast cancer were not detected by mammogram and another whose one episode was not detected. So.....

• Switzerland says no to mammograms  More on Switzerland's Decision

• And one more danger - "the possibility that an existing tumour may spread due to the pressure exerted on the breast during screening"

Choices and Decisions

I hope I am not going to be criticised for writing about this choice. I realise that some of my Breast Cancer Support friends will be reading this. It is up to everybody to make their own decisions, but these decisions should be informed ones. I found the decision difficult and scary but then this whole breast cancer thing is scary. I am going to use other blood tests to go with this choice of thermography and I will explain that in the next blog. Stay tuned.

 

Professor Savni Appointment and My Anti-StressProject

It was good news at my appointment. The results of my "Circulating Tumour Cells" test were that I do not have any cancer cells in my blood. However, I do have quite a few clusters of "potentiallly malignant cells". This means, according to Avni, that I need to be learning better stress management skills. He gave us a few ideas like attending weekends by the experts such as Ian Gawler, going to the movies (concerts?) more often, learning to identify stressors and how to manage them. So, we are going to work on that.

I get the big tick for my dietary efforts, but was told very strongly that no diet would keep me safe if I was anxious or depressed. I can hear you wondering why am I so stressed. Well sometimes I don't even know I am, but Keith feels it pretty accurately so we will keep working on the ANTS.

I can recognise when  student is stressing me so I am working on dealing with that in a better way. For example, one student is very angry about only getting a pass in a recent assignment, and although I am not her tutor, I am the coordinator and must deal with it in a way that will not come back to bite me later. Another student is asking questions I would expect from someone who was not capable of doing a university degree. Answering her questions  many times in a way, that maybe she might understand, is difficult when I feel like saying that maybe she should give up.

I am learning to say no to some activities that come my way, spacing my events out so that I have more time to just "be" at home.

I am not watching any more graphic news of poor wretched refugees or victims of earth quakes etc. I tried last night but was surprised how quickly my tears flowed.

Avni suggested that insensitive people who do not care or think might not be as susceptible to cancer as more sensitive people. He gave examples of a few politicians but I won't mention their names.

I am relieved to have this result and also to know more definitely what I need to work on. I am also glad to be guided on which doctors and professionals I need to be visiting and what tests I need to have in the future. In my next blog I will talk about these tests. For now, I can just live until February.

Waiting for Test Results

From what I have read, it is not uncommon for cancer "survivors" to dread the time between tests and  getting results. For one thing, the memory of getting the results that initially said "it is cancer" are very raw. I think I have lost confidence that results will be positive.

Two things go continuously through my mind.  I know that I am in good hands and that I am doing almost everything possible for a good outcome. But, I am aware that I have not yet learned how to cope with life's stresses, the big ones, I mean.
Thursday is the big day when I should get the results of the recent blood test from Professor Sali.

Dealing with stress and anxiety is a subject that upsets me because I seem to be so bad at it. Everything I read tells me that this could put me at risk. So, more anxiety because I am putting myself at risk!

Daily yoga and meditation I can and do, but when things happen, I find it difficult. Here's what I found  on the "Anti-Cancerize Me" web site:

Studies have shown that the majority of people who have been diagnosed with cancer live with the fear that it could grow, spread or come back after treatment. These emotional feelings can become a chronic source of stress on the mind and body (leading to adrenal exhaustion). - See more at: http://www.integrativeoncology-essentials.com/2013/09/adrenal-exhaustion-and-cancer-is-this-real/#sthash.s2I4acvR.dpuf 

and

Substantial evidence suggests that exposure to long periods of stress increases rates of cancer development and growth. - See more at: http://www.integrativeoncology-essentials.com/2012/04/anticancer-lifestyle-stress-reduction-101/#sthash.Yr4XPK8O.dpuf 

My blood tests in March showed that I had some adrenal stress, so I know I have to work on it. One way of learning that we read about is to identify and change the feelings and worries, when I am stressed. This system is called ANTS (Automatic Negative Thoughts).  Keith is helping me isolate and examine mine. Stay tuned.....

Exercise Duration & Intensity Matter:

A new study indicates that if you want to see even better results longer duration and higher intensity exercise matters. Breast cancer survivors who did about 1 mile per day of brisk-paced walking reduced their risk of dying from breast cancer by 24%. If they stepped it up a notch and ran for 2/3 of a mile each day they reduced their risk by 40%…and the superstars who ran 2.3 miles per day dropped their risk of recurrence by a whopping 95%!

- See more at: http://www.integrativeoncology-essentials.com/2014/01/exercise-duration-intensity-matters/#sthash.SFt1JSxp.dpufExercise Duration & Intensity Matter:

A new study indicates that if you want to see even better results longer duration and higher intensity exercise matters. Breast cancer survivors who did about 1 mile per day of brisk-paced walking reduced their risk of dying from breast cancer by 24%. If they stepped it up a notch and ran for 2/3 of a mile each day they reduced their risk by 40%…and the superstars who ran 2.3 miles per day dropped their risk of recurrence by a whopping 95%!
- See more at: http://www.integrativeoncology-essentials.com/2014/01/exercise-duration-intensity-matters/#sthash.SFt1JSxp.dpuf

Exercise Duration & Intensity Matter:

A new study indicates that if you want to see even better results longer duration and higher intensity exercise matters. Breast cancer survivors who did about 1 mile per day of brisk-paced walking reduced their risk of dying from breast cancer by 24%. If they stepped it up a notch and ran for 2/3 of a mile each day they reduced their risk by 40%…and the superstars who ran 2.3 miles per day dropped their risk of recurrence by a whopping 95%!
- See more at: http://www.integrativeoncology-essentials.com/2014/01/exercise-duration-intensity-matters/#sthash.SFt1JSxp.dpuf

More anti-cancer tactics.

Last time I wrote about this, I began to talk about what I am eating, and I began with the marvellous mushrooms. Today, I want to talk about two things, one, on the emotional side and the other on the food side.

Stress
I have read several books and a lots of research papers and they all seem to bear out what Professor Sali said - that stress is the main cause of illness.  There is evidence that stress causes changes in the physical body, that chronic stress "floods the body" with "immune-suppressing biochemicals". This is bad news if there is a cancer cell or two about to attack and spread.

I didn't think that I was so stressed, but I am learning that although I thought that I usually appear to be cool calm and collected, inside, I am not.

Part of that is probably my upbringing. As the eldest child, I was expected to be responsible and indeed, was praised for being so. As a Girl Guide, I won awards and badges. Here I am as a Girl Guide about 1957 (sister Robyn on left and Mum in the centre). As a GG, I learnt to be responsible for myself and others, and that included, at 15, taking 6 younger girls camping. No matter what, to get that badge, I must be always in control and I must keep my charges safe. I did that, and got what was in those days, a reasonable reward - the Queen's Guide.

Now that all sounds very patriotic and funny now, but I took it very seriously. In fact I took just about everything seriously - religion, my school studies, my music practice. I think this dedication, while it brought me considerable success, it took its toll.

It was, and is, hard for me to relax. There is always something more to be done, if one is responsible!

I am continuing my yoga practice, have resumed daily meditation and am trying to recognise and deal with the stressful moments. Some of the guided meditation has really helped and the new Dederang (over the river and only 8kms away) yoga teacher is wonderful. I play my recorder in a different way - as a meditation. I have cut the number of students I tutor so that means less marking.  I am trying to relax more.

The worst food.
I will make this short seeing that I wrote so much about stress. I don't think it is news to anyone that sugar is bad for us. However, according to all the books I have read, all types of sugar are BAD for cancer.

Cancer cells consume between ten and fifty times more glucose as normal cells.........glucose allows the cancers to grow with reckless abandon............ So, avoid refined carbohydrates: white sugar, honey, corn syrup, cookies, white bread, commercial breakfast foods...........

Although we consumed very few white things, preferring wholemeal flour, brown rice etc., it still meant a lot of changes for me. I am being a lot more careful, especially, when I go out - in the past, an excuse for me to indulge a bit. Honey is even out for me. I am using a tiny bit of xylitol when a sweetener is absolutely necessary, such as in bread making.

Reference: Block, K.L.(2009) Life over cancer. 

What drives me?

Overnight I thought I should write about the purpose of all my efforts. Our efforts I should say, because Keith is right there with me in this.

Firstly, I have always believed in preventative and natural medicine. I remember working industriously making bread, growing vegetables, raising chickens, and drinking lots of camomile  and dandelion tea when the children were little at Billywillinga (1975-1990).

 Here are a few photos of our family (David not born yet) in our Log Cabin in 1978 & 1979.

I always thought that if you didn't look after your body and soul, you got sick. So, I did what I thought I should for many years. When the word "cancer" was pronounced just before Christmas I was absolutely shocked. I didn't think I fitted any of the criteria for being a likely candidate for this disease.

I listened to the specialist doctors and did what I was told until I realised that each of them, expert in what they did (surgery, medication and radiation), did not have an interest in me, the whole me. They were all kind but unlike many GP's, they were, for want of a better word, narrow-minded. They didn't see what lifestyle had to do with my disease. Of these specialists, one, the radiation oncologist, was interested in and approved of my supplementary treatments.  The GP's, as caring and dedicated as they are, are often too busy with emergencies, testing and diagnosis to look further. And preventative medicine doesn't fit in with the emphasis on curing. Nor do they have time to read the loads of research out there. I began to read and have less faith in the medical people than I previously had. I was responsible for my own well-being.

I found an American radiation oncologist online who has a website called "Integrative Oncology" and given my special teaching subject at Charles Sturt University is "Wellness and Wellbeing", I was interested. I was hooked, actually. Holistic health, holistic medicine - this is it for me.

Take a look

Enough for now.

And wait, there's more....

Several people have asked that I continue this blog so that I can share the exciting things I am doing to be healthy, so I will try. Sometimes, I will be brief, but will give links so if you want to know more, you can.

I am feeling great - full of energy and enthusiasm - most of the time! It is hard to know where to start.

My last blog told you that I had an appointment with Professor Avni Sali and gave you some links for you to explore. I have followed Avni's advise and have also been doing my own reading and researching.

At the risk of boring you silly, I will start with my diet. Everything I am doing is supported by science, but it is hard for me to always remember why I am doing this or that.

So, lets start positive. What am I eating that might be out of the ordinary, and why.

Mushrooms

Chris Woollams. CANCERactive writes: Research on the subject of medicinal mushrooms is consistent and very clear: Depending upon the variety, they.... 

        * increase survival times in research trials with breast, lung and prostate cancer patients,

        * can shrink cancer tumours by up to 70 per cent (some extracts even caused cancers to disappear)         * stimulate the immune system, for example increasing macrophage activity or stimulating B- and T-lymphocyte production        * reduced blood supply to prostate cancer tumours, and,        * reduced side-effects of radiotherapy and chemotherapy (like nausea and hair loss).

There is lots of information on the web about the use of mushrooms, some denying its use for preventing or curing, but the philosophy that I am following is that they will increase my immunity and help to improve my overall health. We both happen to like mushrooms and unlike some "real" medicines, have no side effects.

Stay tuned for the next food idea.

Professor Avni Sali

On Thursday I had a long appointment in Melbourne with Professor Avni Sali. This link goes to a little YouTube video of Avni explaining his philosophy. There are also quite a few lectures from the NIIM (National Institute of Integrative Medicine) on YouTube if you are interested.

I feel much more confident about keeping myself healthy, with his holistic ideas. I had two blood tests, one to test for the number of cancer cells in my blood and the other, a Live Blood Analysis.

The live Blood Analysis went straight from my finger to the microscope and up on a screen in front of us. It was fascinating to hear a very competent naturopath explain different aspects of the view we saw. One thing that was reassuring was that we could see the cells that had been damaged by the radiation, but there were also "baby cells" that were bright, very lively and a good shape. My liver was seen to be in very good shape too. I won't go on and on about it, but one thing we know is that the steps I took to reduce the effects of radiation worked.

It was not all good - for example, my adrenal stress levels were up and it seems my Vit D3 is down. My blood is quite "sticky" so I have to work on that. So, I am armed with ideas for staying well. Keith learned a lot too and is keen to improve his health.

Those of you who have seen me recently will know that I have lost quite a bit of weight and I have been told the following:

1. I look 10 years younger
2. My face and skin are glowing.
3. I look better than I have for a long time

What I can tell you is that I feel very well and I am beginning to wean myself off the antidepressants.

I probably won't be putting too much more on this blog. I have my life back so will go back to my ordinary blog when something interesting happens. Thank you for reading my blog. Thank you for your patience and support when I have felt very low. Prof Sali said that people who have support from close friends get better faster and live longer. Thank you so much for enriching my life.

Normal blog  http://wyverneblog.blogspot.com.au

Walk Around Lake Illawarra

My Reward Holiday

Today I walked fro Towradgi Beach to Bellambi and this afternoon I visited my Mum who had no idea who I was. When I was leaving she said "Don't tell them your great grandmother hasn't got a brain".

No more radiation!

Today was my last radiation treatment. I said goodbye to all of the lovely radiation therapists, the nurses and the admin girls and was told I could RIP (!) my name off my locker.  I told them all that although they were all lovely, I hoped not to see them again.

I am feeling very well, full of energy and very little skin damage compared to what I have been told of some other peoples' experiences.

I am off to Bundanoon to play recorders all weekend and then to Wollongong for a week. The next cancer event will be my appointment on May 14 with Professor Avni Savni in Melbourne.

Allandale and good news.

Sunset at Rand

Yesterday Kaye and I went out to the farm where she grew up and which her brother David now runs. There are 3000 acres altogether. It was so interesting to listen to David talking about the scientific way he farms. We had two long lovely walks and collected a boot full of pine cones for our fires. On our way home, we visited the graves of Kaye's Mum and brother and later, her father.
Then we did the Corowa op shops (quite successfully) and returned for today's radiation.

The radiation is going well. Yesterday when I had my weekly check up with the radiation oncologist, he was amazed at my only slightly damaged skin. He wanted to know what I was doing. I took pleasure in telling him about the large doses of curcumin I am taking. He immediately searched the medical information online and was surprised to read that there is research to show how good it is for skin problems.
The other good thing is that instead of getting more and more fatigued, as predicted, I am getting more and more energy. So, something is working well.

All sorts of Things

I have been very busy going to the hospital every day, doing my 1 hour's walking,  half hour's meditation and squeezing in some Japanese and Welsh. It has been great to stay with Kaye a couple of times a week to cut down on the travelling somewhat.

The radiation is going ok with only a slight rash so far - 13 treatments to go, so we will see. My biggest upset this week was actually starting to take the dreaded Tamoxifen. I definitely should not have looked at other "users'" blog comments about side effects. The problem is of course, that if I don't take Tamoxifen, I am likely to get the cancer back. If I do, I could get cancer of the uterus and cataracts in my eyes plus numerous other nice things

Keith and I had a bit of a chat about it and "we" decided to try it for a while, at least until I go to see Professor Avni Sali . I am thrilled that I have an appointment with him on the 14th May in Melbourne. This man is the guru of Integrative Medicine, which means holistic. I am tired of the medical oncologist only knowing and dwelling on drugs, the radiation oncologist only knowing and concentrating on radiation and the surgeon only worrying about his surgery. The counsellor and breast care nurses are the only medicos who really care about me.

I have already studied the American Online Integrative Oncologist's information and now I am reading books and watching films suggested by Prof Sali's organisation. It is the same philosophy, thank goodness. It is hard work and every now and then, I get the doubts. I just watched a film about the connection between the  mind and the body - lots of professional doctors and researchers advocating for meditation, yoga etc to assist in healing. They talked about "belief" - you have to believe that what you are doing is going to make your life healthier. Moral of the story for me - no more googling and never try to talk to the radiation oncologist about anything except to reply to "Do you have any rash or discomfort?"

On Monday night, in between daily radiation treatments, we are having a night out. The Dederang Picnic Race Club gave us a night at Quest Apartments, dinner and breakfast included. Also, after 13 more treatments, I get to go to a recorder weekend at Bundanoon, have a holiday with my sister Rob and even go to a concert in Sydney.  20 sleeps till I go to Bundanoon! There have to be some rewards for all of this stuff.

Well I have already had some rewards.
Visitors:Karl, Dave, Alison and Molly, Grant and Jan, Irene and Jim, Noellene, Louise, Celia and Jennni and her Mum from CSU, and my lovely recorder friends Suzanne and Rachel.
My constant reward: Keith's loving and patient care.

Alison and Molly Visit

Alison and Molly came down for a week to help us manage the radiation trips and to give us some joy.

We (A,M & I) stayed at Kaye's twice and took advantage of Kaye's heated spa and her kindness.  Don't know what we would do without her

I have had 9 treatments and apart from feeling a bit drained sometimes, I am not suffering any side effects yet. I had a  appointment with my radiation oncologist and wish I had not opened my mouth about integrative oncology. He told me about people who had changed their diet etc and died anyway. I plunged down into mild depression for a bit and had to be reminded that doctors don't know everything, only their special area and he is a radiation specialist.

I am being diligent about many things, such as juicing vegetables daily, drinking lots of green tea, eating more fish, eating 2 bits of dark chocolate daily, walking 9000 steps per day (trying to do 10,000) and meditating for 30 minutes.
We are enjoying a weekend of no radiation and no trip to town. It is so good to have Al and Molly with us. By the way, Al has a fly net over her head in the photo near our house.

That's it for this week.

Pamper Day and Update

I have had 4 radiation treatments and have survived. Spent two nights in town with Kaye. Together we have kept up daily Pilates and half an hour or more daily walking. I managed to do half an hour of meditation and drink a glass of fresh vegetable juice every day. This is the way I a trying to get through this with as few problems as possible. I am also taking some recommended supplements.

Yesterday I went to a Mt Beauty Cancer Pamper Day. It was free aromatherapy, reflexology and good food. There was also a free expert fitting for a very expensive bra, towards which the Government contributed $50 for each of the 12 women.

It was a good day with lovely people. I was surprised that I managed to have my feet massaged etc - I am usually so ticklish and people who touch my feet have to beware.

And now for another week of radiation. The good news is that Alison and Molly arrive tomorrow afternoon. I can't wait.

One down, 29 to go.

I survived first radiation treatment. As you know I wasn't worried about the procedure - it is the effect of procedures I was concerned about. However, I am clinging to the ability of my body to heal. 

I am staying with Kaye tonight and we will both go out to Keith tomorrow  after treatment. 

Thinking - Feeling

" The quieter I can make my mind, the more I can perceive the link between my thoughts and how I feel....   ...Having a quiet mind gives me a peaceful life and helps others around me choose peaceful, serene, effective lives for themselves" (Dr Wayne W Dyer).

After having a great "fun" holiday, I came home to my reality and for a couple of days, I was very "down", wanting to go to sleep for a very long time. Again, I resorted to a self-help book, one that I borrowed from the Theosophy library. Amongst other wise suggestions, I read again the sensible truths about the connection between thinking and feeling.

So, what is wrong with my thinking? I know that radiation and drugs are recommended, but I was not sure it was right. It might be overkill (supported by quite a lot of studies). The consequences of these treatments brings with them unwanted side effects and as far as I thought, would further contaminate my body.

I went off to the local exercise group this morning and talked to a few of my supportive friends.

Di came up with the first thought that somehow I had not considered. Our bodies heal themselves. Cuts heal, bones mend, new cells are continually produced. Now why had I not considered this. I have even read books by cell scientists. Ruth (former nurse) said - fill your body with rich nutrients. Well I have already started to work hard on this.

The Online Integrative Oncologist also points out the other things that I am going to try to adhere to - rest, meditation, exercise, cutting back on stress and losing a little bit more weight etc.

Di lifted my thinking so that all the other things fell into place. Ruth enforced it and Judy and Wendy who joined me for a local barista coffee were also helpful.

I can cope now. My thinking is straightened again and I feel more positive. Please remind me if/when I go "down" again.

Thanks for the emails and messages of love and support. If people get better as a result of care, love, and support, then I am the luckiest.

Two Old Ladies on Holiday

Kaye and I travelled to Griffith by train and bus today - for $2.50 each. Here we are in the Victoria Hotel and here is the Main Street, extra wide, trees down the middle. We have wined and dined here in the hotel. Here's to a fun day tomorrow. 

Searching for the Positives and More on the Cost of Treatment

I have been busy researching the things I can do to help myself conquer this disease. So far I have decided on:

•  daily fresh and wherever possible organic vegetable juice. 
• more organic fruit and veg
• curcumin and mushroom extract capsules. 
• I have to decrease my dairy intake because cows milk, as I should have realised, contains lots of oestrogen, although the oestrogen is in the fat, so skimmed dairy products are not so bad. Sheep and goats' milk are not as bad as cow's milk. Soy milk and tofu are ok. Almond and hazlenut milk are also good. (Just so you know how important the oestrogen factor is - my type of cancer feeds on it.)
• More fish
• If I do eat a little meat - only grass fed - again other beasts are fed hormones (oestrogen etc) and other doubtful stuff. The advice is to mostly avoid meat. (Tim - your organic, grass fed lamb is very acceptable).

For the rest, our diet seems to be pretty good, according to the Integrative Oncology research. I still have the other modules to do - exercise, spirituality, relaxation, stress management. It is quite time consuming to study. 

I was getting rid of some old newspapers and saw an article entitled "Breast Cancer Patients complain of high cost of Treatment". One thing I am grateful for is that I am an old pensioner - if I wasn't, the medication for the next ten years could be almost $6,000. At least one of mine will be $6.10 per month. Hopefully the next one will also be on "the list". Radiation is not covered by my health fund, - it is a Medicare issue, so I pay the gap. The full weekly cost is almost $3000. Apparently we will be over the safety net, so ONLY have to pay 10% of the full cost - $280. 

I have been told that if we lived in Melbourne, the cost would be nothing at Peter McCallum. Equity? There is a huge new Cancer Centre being built at Albury Base Hospital. I wonder whether that will be different - too late for me.

So most of the time, I am concentrating on all this positive stuff. Every now and then I think - all this effort could be for nothing - but I quickly banish the thought. I have to do my best.

Tomorrow is my holiday with Kaye. I will be back at Albury on Friday afternoon and home Saturday morning. More about this next blog.

Choices.

This morning on awaking, i did one of Tim's mindfulness meditation cd's. I was led to observe the thoughts as they came and went. What kept coming up were the stern unsmiling words of one of the radiation nurses on Thursday, after she told me that there would be no "deep breathing organ saving" type radiation".

Nurse: "Well, do we go ahead?"
Me: "What choice do I have?"
Nurse: "It's always your choice" (said 3 times)

For sure I do - mastectomy, radiation + drugs, or a high risk of a returning, fast growing cancer. It honestly made me want to slap her unsmiling face. For all the positive thinking reading, meditation attempts etc I am still angry. Most medical people I am dealing with are kind, full of empathy and understanding - thankfully.

Today, I will steadily take myself through household jobs, hopefully some Japanese and Welsh and definitely the daily post-operative Pilates. Cousin Noellene will arrive - and I can't wait to see her. Tonight, we are going over to Tim's for an early celebration of Tim's birthday.  I just have to hold it together today.

Just so you know I am not completely hopeless, yesterday afternoon after a nasty "down crying" session, I took a valium and went to bed. Then I got up and steered the ride-on-mower over almost all the grass!! Alison sent me an sms "Bravo!"

Thanks to Diana for phoning me at the right moment yesterday afternoon. You are such a help.

Cancer is only for the Rich

Yesterday, I got measured up, tattooed and also was given a "payment plan". The fortnightly cost of my radiation will be more than half a Senior pension. That is the gap between the full cost and the Medicare contribution. Too bad if you don't have any extra income of any sort. I am lucky CSU still gives me a bit. I guess the very poor have radiation but no food for 6 weeks

Again, I found the whole thing emotionally upsetting. Firstly, I don't like going there. It takes every bit of self discipline to take my shaky legs into the building.  Secondly I was told that although they have the new machine for "Deep Breathing Radiation" (where they are able to dodge heart and lungs (only the lung part affects me), they are not using it yet. So, my radiation will slightly scar my lung. I felt a deep disapointment.

The "care" nurse I saw first was very nice to me - too nice - the tears almost came. Then the radiation nurse told me the news about "no new machine". Next,  the doctor came in  to check they had the right spots for the tattoos. He looked at me and said "you look like you need to say something to me but can't. You look like you are going to cry".  So of course, the tears started to flow.  I saw him later and he was very comforting - told me that they would do their best to miss as much of my lung as possible. He also said that many of his patients take valium to get in the door ever day. I am not on any medication at the moment - between antidepressants and no valium because I was driving. I tied the Bach Flower remedy but it was not powerful enough.

Kaye came with me for support and afterwards we had lunch and a much needed coffee. Then we booked our train tickets for our little holiday. That will be next week, so I will tell you about that later.

Last night, we had Jan and Grant for the night and they have just left. It was so lovely to have our loving friends here. So now it is Friday and I am ok. Think I will try to get on the ride on and cut those lawns again.

Busy Good Day

Today was a full and positive experience. It started with my glass of fresh veggie juice and Bircher muesli with our own home grown berries. Pilates came next at My Beauty. I just had time for a bread roll and banana and it was time for my Japanese conversation lesson. Then home to wash and catch up with my uni emails, a quick dinner and I was off to wodonga for a Theosophy lecture. 

Finally I have come to Jenni's for a sleepover. Tomorrow will be a bit nerve wracking but I have my trusty Bach Flower Remedy and Kaye to sit and wait at the hospital for Tattoo day- will explain tomorrow. 

Today

I just emailed Irene and told her that today is one of those days when I want to say "bugger" so I thought I would share it with you all, being very generous.

Yesterday I read this:

Don’t bewail and bemoan.

Don’t waste yourself in rejection, or bark against the bad,

But chant the beauties of the good.”

So, I had better be this angel instead.

Integrative Oncology

This week I have been researching to see what I can do to help myself survive the invasion of radiation and drugs. I found lots of things. Many natural complimentary therapies suggest similar things, one very common idea being to drink fresh vegetable juices daily. We bought a slow juicer and tried today. I found my kale/brocholi/celery/carrot/apple/pear drink quite delicious.

I also found a site called Integrative Oncology, run by an American Radiation Oncologist. He suggests a holistic approach that includes, diet, exercise, stress management, etc I am studying his ideas. I also found lots of the same subject in Australia, so have plenty to work on.

This is helping me feel that I have some control over what is happening to me. I can do things to minimise the effect of the toxins from radiation and drugs.

I am in the process of changing from one antidepressant to another, a process of 18 days and that seems to make me nervy and shaky but apart from that I am doing fine.

Funny Feeling

This morning, I noticed that this is the last week of February and I had this funny feeling that I have missed the last few months. It feels like I have been somewhere else. This other place that is not real. This world of cancer. It takes over. It is on my mind whenever something else is not.
Have to work harder at getting this meditation better. Control of the  mind?

Goodbye and More Thinking

We said goodbye to Tahlia and Colin this morning so our house is quiet and empty. They have been so loving, generous and helpful. Trouble is that now I have more time to think.

Since about 1975, I have tried to do things naturally - as little additives as possible in my food, smallest amount of packaged and processed food as possible, the closest to organic food as is available and financially possible, and as little medication as possible. Soon I am about to fill my body with toxic chemicals for 5 - 10 years, with medically acknowledged side affects. It actually gives me the horrors. I have to say, I am angry. I do have a choices:

•  Mastectomy or 6 weeks of radiation
• Strong drugs or risk getting cancer again


So that is not much of a choice - a bit like for me: would you like raw onion or beetroot or raw capsicum for dinner - except that none of these would cause me to die. 

I have just googled to see what I can do that is natural, as co-treatment, not alternative. There are a few ideas and I plan to see the most well known naturopath in Albury. I am not sure what the medical oncologist would think, so don't worry I will also check with her. I found a well researched and academic paper that has suggestions of natural "options to increase the effectiveness of Tamoxifen".

What is slightly annoying is that all the foods recommended for inhibiting the production of excess oestrogen (the feeder of my cancer) are foods I already eat!  Chick peas, onion, garlic, apples, brussel sprouts, cabbage, berries, green veg. So what have these foods been doing - going straight through my body without doing what they are supposed to be doing?

Oh dear - Keith is calling me to eat my lunch - some of the above foods, I guess. Again I say, bugger!

All Good with Oncologists

Thank you to those who have already emailed or phoned to see how it all went yesterday.To sum it up, it went well and I came home feeling as though I had been given a Xmas present.

I was already nervous and had taken a valium to stop the shakes, but in the waiting room, I was talking to a lady who I had first met at the Mammogram Call-up and thence every time I went to the surgeon. She had just had her appointment with Kerrie the Medical Oncologist. Silly me asked her if she had to have chemo. She answered that yes, she did, because the medicines were not compatible with her other medical conditions. Oh no, I thought, that's why I am here.

Kerrie was caring and kind, and very proficient at her "trade". She told me that all of my doctors - surgeon and two oncologists had already met to discuss my case. She drew up a table of the things I had in my favour and the thing I had against me - so mostly good, only bad thing was that my tumour was the highest grade, meaning fast growing (it had developed and grown to be what they classed as large in less than six months). But since all the other considerations were good, the decision had definitely made that NO CHEMO for me! Phew!

Firstly, I must go to my GP and get the temporary antidepressant changed. Then they will juggle the two possible drugs that I must take for ten years. Each has its own benefits and quite serious side effects so they will have to keep changing between the two drugs and watching my bone density especially, but also all the other things these drugs do to you like raise things like cholesterol and blood pressure and more.  Some of the time I will have to take the dreaded bone drug Fosamax, which I have refused to take in the past because of the possibility of serious side effects I do not want.  Kerrie promised me that I would not be on it for long enough for it to be a worry. So I am happy with that and Keith and I felt we could trust Kerrie.

So, off to the radiation oncologist. Again, a very friendly and competent doctor. The good news he gave me is that they will not radiate my good clean, cancer-free lymph nodes - one of my big worries because of the risk of Lymphodema. Radiation will start in the second week of March but I haven't got the appointments yet (probably 10th March as 9th is a public holiday in Victoria).

Both doctors told me as others have said, I do not have cancer now. It has all gone. The rest of the treatment (for the next ten years) is to do the best they can to prevent it coming again.

We have Tahlia (oldest grand daughter) and Colin (her fiancee) here for us to enjoy and keep me distracted, although even though I say it myself, I am doing ok. They are very loving and helpful and I am grateful they have driven all the way down from Queensland.

The Shakes

I wonder if I do a post, I will stop the shakes and loss of balance. I have had 10 days off doctors and now it is one sleep till I see the two "oncologists". What a horrible word. I have dreaded it since I was old enough to understand. Actually, I thought it meant doctor of cancer, but the dictionary tells me it is "doctor of tumours" so I suppose it doesn't have to be cancer - it could be a benign tumour. However, to me the word conjures up "cancer, and I have it". I always felt horror when other people spoke of "their oncologist".

Anyway, today, I must work hard to keep my mind very occupied. Have already done special Pilates, picked berries, and Japanese conversation and I didn't get up till 9, having listened to my audio book for a couple of hours and done my 'raising of the arm exercise". I have to do everything slowly because of this lack of balance.

Tahlia and Colin will arrive this afternoon and tonight we all will go to Tim's for my family birthday celebration. I have some cooking to do too, but I am resigned to the fat that some things I will not get done and that Tahlia will not  mind and will help me. So, having exhausted myself picking berries I am now going to lie down and do my Welsh conversation for a bit.

Yesterday was full of lovely birthday phone calls, skypes to Karl's family in the Solomons and to Toshiko in Japan, lots of lovely cheery E-cards, Facebook messages and emails - quite overwhelming. Thank you.

My fingers are still shaky. I wonder whether when I stand up I will have my balance back.

Oh bugger!

Up Yesterday and Down Today

Yesterday I had a real treat. We went to Albury and I didn't have to go to a doctor or hospital - it's ages since that happened. Keith and I did some shopping, including searching for a birthday present handbag and then  had lunch at what seems to be our favourite lunch place at  the moment - "Jones, the Grocer" - good lunch, good coffee and good price WITH CLASSICAL MUSIC! Then I met up with Kaye so she could help me buy a new blouse - bought two! It is so much more fun to buy clothes with Kaye, rather than on my own. We also finalised the choice of the handbag. I even talked to Kaye about plans for managing the 6 weeks of daily trips to Albury for radiation and told her that lots of people had told me it was no big deal until the last few weeks. So I wasn't worried - yesterday!

Today, I woke up early and very unhappy, after a very broken night of sleep. Lots of audio book listening during last night. After talking to Keith about how I felt - he suggested I blog about it - it does help. Today I feel differently about the radiation. I am frightened of what it does to the body. I know it kills cancer cells but it there are possibilities of temporary (ok) and long term damage and even further disease. They tell you that these days they are cleverer and the risk is low but it is still there.
Then there are the drugs I will have to take for 5 years - well it is not a good idea to look at the possible side effects of those.

So today, I am fearful. Today I have lost faith in my own body to keep healthy. Before December 19, 2014, I was a healthy person - even quite fit. Now I am contaminated. I would like to curl up and sleep, and wake up about May this year, when I can get on with my life, go bush walking and do all my usual things, but mainly I want to feel like my body is clean.

However, in a minute, I will make a list of what I hope to achieve today and tonight we are going to Tim's to celebrate Karen's birthday (Tim's mother-in law). So, writing this blog has made me feel better.

How I feel  Please look at this - it is pretty cute.

I am OK!

I thought I had better update this blog even though nothing much has changed except me. Somehow, I am feeling more confident and have moved from that awful state of despair. Maybe the tablets kicked in or maybe I am over the shock, or maybe getting the last satisfying result of no cancer in the last bit they removed.

I have had a break from doctors for this week and I am not looking forward to my first visit to the two oncologists on Monday (16th). I actually went to Pilates this morning. The physio (Fiona) altered my exercise program and gave me some information on how to do the best I can to avoid getting Lymphoedema (a nasty complication of lymph node surgery and radiation). Keith and  I saw a lady who has this disease and were so shocked that we needed to find out more.

I have been able to read a bit more of positive philosophy so will share it. The first book I picked up off the shelf is called "As a Man Thinketh" by James Allen. As the name implies, it links our thoughts with our character, health, achievement and purpose, just to name a few. It is quite an old book (1902, free online by the way) and I agree with much of it, while some worries me.

I thought that if our thoughts do effect our health, and to some degree we all know that, we can turn that idea upside down. Then we have to blame our thinking for whatever disease befalls us. So I will take on board that positive kind and loving thoughts do help, but that is not the whole story.  The part that helped me was the part about purpose. Since my diagnosis, my purpose or purposes ceased to exist. My new purpose was to get from the beginning of the day to bedtime, and very glad to get to the bed time and temporary loss of consciousness I was.

They who have no central purpose in their life fall an easy prey to petty worries, fears, troubles, and self-pityings..... Thought allied fearlessly to purpose becomes creative force (p40).

So I made some decisions:

• Play at least one piece on each recorder every day I felt up to it.
• To stop learning new Japanese and Welsh, but to daily revise old stuff, including conversation cd's - until all the treatment is over.
• Take daily rests
• Do all daily exercises associated with recovery and prevention of  Lymphoedema.
• Gradually do what I can to relieve Keith, but to try to accept my limits
• To be the convenor of the uni subject but not to tutor or mark this semester.

Today, Fiona (physio) helped clarify my physical limits with both Keith and me

Then, my second book off the shelf was "Exploration Into Insight" by Krishnamurti, also old (1972). I love Krishnamurti's words. Keith and I found one of his short talks on YouTube and were inspired. There is a discussion with other philosophers on "despair", really delving into what it really is. Here are a few bits that described how I felt when I first got this diagnosis.

A feeling of nothingness.

I am angry, furious because I have given my life to something (seeking for truth, healthy living etc) and I find "somebody" has betrayed that...

...There is an immovable fact....I have no escape... No analytical process is possible .........thought is paralysed, ...  I am in a state of shock.

They go on to say that the expression of these feelings  and acceptance of this state is essential in being able to accept the unwanted fact.

It was interesting that this is almost exactly what the counsellor said when she relieved me of the guilt and disgust I felt because I couldn't seem to cope. You might remember that she told me that in a state of shock, it is too early to philosophise and try to be serene and accepting. I would not say I have reached these desirable states, but I am certainly calmer most of the time.

I am sorry I worried a few people because of the lack of blog!

Progress

Two days ago, the local GP drained the "seroma", which is a normal occurrence and not dangerous and gave me different painkillers to cope with what was going to continue to build up.

Today, I went back to the surgeon for the results of the last surgery - good news - no cancer in the last bit they took. So now to the next step - radiation and anti oestrogen drugs.

There seems to be a choice of two drugs, each with its own side effects and each being incompatible with particular other drugs. Drug A cannot be taken with the antidepressant I am on. Drug B cannot be taken by patients with osteoporosis.

Oh dear, he (not the doctor in the picture!!) said - I will have to send you to two oncologists, an expert to work out the drugs and one to organise the radiation.

So now I wait till Feb 16 for these appointments.

I was a bit concerned that this drug problem would hold things up so I have just phoned the Breast

Care Nurse to see if I should change the antidepressant or go back to the GP. She reassured me that the drugs come after the radiation, and that it was much better to wait patiently to see the oncologist drug expert, Dr Kerrie Clarke. Several people have recommended this doctor to me.

The nurse (also Kerry) gave me some more advice. I need to have a rest daily for several reasons - my armpit seroma (apparently likely to be a problem during radiation), recovery from 2 lots of tissue surgery, 2 lots of general anaesthetic, as well as what they are calling a sort of PTSD.  I am afraid I won't be arguing - I seem to be constantly tired and wake up very late - so so not me!

So, there should not be any more posts until 16th Feb. Hopefully there will be no events to report. I am feeling more in control, although occasionally just wish it would all go away, and I occasionally shed a tear or two. I was sent a link to the writings of an American "Pink Survivor" - she expresses much of my feelings in an intelligent way. You might like to read it - it is a bit
"anti pink", a bit anti-commercialism, a bit anti "welcome to the smiley club",  and anti "cancer is a gift", but it is not all negative.
BarbaraEhrenreich

A Common Side Affect, but Ouch!

I have been struggling to cope with a very sore arm for a few days. We went to Myrtleford to shop and have lunch on Saturday and Kaye was here Saturday afternoon to Sunday so that was a happy distraction, but by Sunday night, I had had enough of the whole thing and dissolved. This morning i didn't want to get out of bed because standing up is too painful, so I phoned my lovely Kerry, my Alpine Breast Care Nurse. She confirmed that I have a "seroma" and she made me an appointment at Mt Beauty today to get it drained again.

I have taken strong painkillers so I can do a few jobs to help Keith. Have marinaded some tofu but had to get Keith to grate the ginger and squeeze the lemon. Have put the washing on but Keith will have to hang out and bring in. Being so dependent is hard for me. I am trying hard to stay positive but today it is hard - but I have not resorted to Valium YET.

Down Day

I have a very painful swollen armpit again and feel very tired so I have given myself permission to take the strong hospital pain killers and Valium. Watched the last episode of 'Mildred" and escaped to bed. Will answer emails tomorrow.

Thursday morning

Thank you so much for all the messages, phone calls and emails. I slept till after 10 this morning and woke feeling much better. So much relief about the no chemo and my arm feels much much better. The hospital nurse phoned and ordered me to read and watch movies all day - no work. I will obey.

Hospital results

The best news is that no chemotherapy is needed. They also drained my very sore armpit . Only radiation therapy to happen later. Keith and I are very relieved and are on our way home. 

 

2nd hospital day

 Today, I woke up and felt normal. I wonder why. I don't remember feeling ordinary for quite a while. Anyway, I have eaten my last supper -and I ate Judy's lovely mulberry jam!

Yesterday I was so busy, that I was extremely tired last night. In the morning we went to Mt Beauty to replenish my drug supply, and food. While in Mt Beauty we bumped into a friend from my bushwalking group who had breast cancer more than once and has already lived 18years to tell the tale - oh what a lovely warm hug of friendship and understanding. Then Keith dropped me at lovely Di's. First I helped collate the local rag. Then it was time to go to a local meeting at the local coffee-come-everything shop about our local weekly exercise class. We had to argue our need for a weekly trainer with the council reps. We didn't exactly win but we do have a trainer once a month.

Then, back to the farm and time to round up particular cows, sort them, tag them and put them in a particular area to wait for the truck to collect them for the sale yards. Well, I didn't exactly do any of the active work - I was the secretary, ticking off the  numbers of their ear tags so we knew we had the right cows.

It took a long time and Di insisted on washing all the cow poo off my sandals before taking me home. I slept like a log all night almost drugless.

So now I have the morning to fill in - I am adding more audio books to my iPod and drinking water as instructed. Still can't do much with my xxxxxxx right arm (will it ever get better?) We leave home at 11.

Monday gone

This morning Keith and I went to the bonagilla migrant hostel "museum ". That exhausted us both so we slept the afternoon away. Now for a little TV and off to escape in sleep again. 

Boys have gone

There is no real update. It was so wonderful to have Karl and Dave here. Apart from their joyous company, they worked very hard in the garden. Yesterday they took me to visit Tim's family and then to Beechworth for a lovely lunch.

I have succumbed to taking all the medication given to me and although it makes me need a lot more rest, I am coping to some degree.

Thanks again for all the lovely messages, photos and emails - they mean such a lot to me.

My Lovely Boys

I have Karl and David here with us for a few days and Tim is coming over this afternoon. Although I say it myself, they are gorgeous.

Yesterday I saw a counsellor and although that was exhausting and quite traumatic, I think it was good for me. She says I am trying too hard too early to be accepting. So sleeping and hiding in a book is ok. She also said that my grief/depression/shock is a result of an accumulation of things - too many face operations, losing baby Alex and watching the family suffer, and now, as it seems, some bad frightening news every time I go to the Dr.

So, I am to allow myself to do whatever I feel like and not feel guilty. Escaping from reality is ok - talking books, movies, medication and lovely friends. Anything to get from this minute to next Wednesday's trip to hospital.

Results

One good thing is that there is no cancer in the lymph glands. The bad thing is that the tumour  is grade 3 and twice the size they thought so I go back to hospital next Wednesday. The other result is not back yet so it is not decided whether it will be chemo or radiation. Keith and Karl went home because keith had an appointment at Mt Beauty. I am staying with kaye as I have  an appointment with a counsellor tomorrow. I am feeling pretty down I am afraid. 

"Tiny Steps"

In my upside down life where nothing seems real, I took some tiny steps.

I still woke early (normal) and stayed in bed listening to my audio book until nine (my upside down life) when Keith came in with comfort, and persuaded me to get up for a coffee (upside down life as I always drank carob soy milk for breakfast)). Gone are the days of my early rising yoga, meditation etc., hours before Keith got up.

The first tiny step was that I could stand without shaking and didn't need a valium.

After my breakfast, another tiny step, I went outside, checked my 3 new chicks in their new maternity wing. Then I dead- headed the roses and collected rose buds and gladioli for vases. By that stage, I was exhausted and had to head for my bed and book.

After lunch I went out and picked blackberries (our own vines) and turned on my watering system. Keith made me a dandelion coffee, I turned off the watering system and now I am ready for bed and book again.

Yes, I know, I am a slow recoverer, but I can see an improvement. Life is still not real though. I still want my old life back. Not much Buddhist thought has reached my inner soul.