Post Number 32 - And So It Really Begins

How do I even start to explain how things have changed in the last 10 days? My life is a blur and my brain is struggling to keep up. I hear people say all the time, "Wow how time flies!" Well, let me enlighten you on how fast time can pass and how dramatically life can change in just a few short months.

On Thursday the 5th of February 2015, we were given the news that Mark's tumour had returned and that it was bigger and more aggressive than before.  Modern medicine had little more to offer, with the exception of chemotherapy as an unlikely chance to maybe slow things down slightly. But we collected ourselves, found alternative treatments and options and moved forward.

Since then our lives have been wonderful, joyous and relatively stress free. Mark could potter in the garden, do short bursts on the computer, meditate, relax in the hammock, cook and look after himself.  I could study and attend college by arranging company for Mark in my absence.  I could go to the shops, take Sebastian to and from school, all in the knowledge that Mark would be ok. How did this all change so quickly?

It took just 10 weeks!

On the 10th of April (6 days before our official wedding anniversary) we attended a special event called the "Village Market Feast".  Mark was looking forward to this event as it was to be a 3 course dinner, planned, prepared and cooked by Callum Hann (those of you who are Masterchef fans will know who he is). So we spruced ourselves up and prepared for a special evening, including Moet champagne on arrival.  So keen were we that we arrived 15 minutes early, so we sat in the car and chatted about what culinary delicacies we may encounter over the evening.  And then it happened...

Mark had a partial seizure.  I held his hand tight as he let the wave flow through the left side of his body.  It took only 2 minutes, but it was all the information we needed.  Despite all our efforts, the tumour was growing.  We took a moment to acknowledge it but then quickly moved on.  We entered the venue and enjoyed the evening as if it were our last. And in a way...it was.

10 days later and I was loading the car for Kangaroo Island, a family holiday I had booked many weeks before. Realisation really kicked in when I had no choice but to organise, pack and load the car by myself as Mark had not slept well and was feeling particularly weak.  Suitcases, boxes of food and activities needed to be correctly arranged to ensure they all fitted into the car.  Our desire for healthy Indian food (Ayurveda), meant I needed to cook as much food as I could to take along with us.  So on Monday night, after a day at College, I cooked an Indian feast and packaged the left overs, along with a sweet potato soup (laced with turmeric & ginger) and other delicious and healthy treats.  My sixth sense was obviously working, because we soon learnt that healthy food on the Island was impossible to come by and any shops required significant driving to access.  No such thing as the local IGA or corner Deli!

We all travelled reasonably well including the boat ride.  My anxiety about driving the car onto the boat soon vanished as it wasn't as difficult as I thought it would be.  Our accommodation at Emu Bay was nice, although not directly on the beachfront as I had imagined, but still, the view was beautiful.

With a better sleep and some sunshine, we seized the opportunity to do some sight-seeing and headed for Seal Bay.  I faced my fears and drove on an unsealed road for the first time in 15 years.  The last time I was driving a 4WD with two passengers and managed to roll the car three times, with it landing upside down.  Everyone survived the crash, however, I have never been able to travel on dirt since. But I knew I needed to face this and I am proud to say that I did it with ease and I again showed myself just how capable I am.


The "Raptor Domain"  Birds of Prey and Reptile Park was positioned on the turnoff road to Seal Bay and boasted a gourmet hamburger café.  We entered and looked forward to a nicely brewed coffee (as I had forgotten to pack coffee...doh) only to receive a badly made pod coffee with un-frothed cows milk. Thankfully the Birds of Prey followed by the Reptile show soon overshadowed the bad coffee and we managed to get many great photos including me holding a Wedge-tailed Eagle and Mark and Sebastian holding snakes and lizards.  It turned out to be a really fun morning and I would highly recommend it to any KI tourist.  The gourmet burgers were not so gourmet, but with absolutely no other options for lunch, we were grateful for what we had.

With Mark still determined to experience the day, we drove on to Seal Bay.  I asked a thousand questions to assess if Mark would be able to make it to the beach and he decided he would push on.  As our tour group consisted of only us plus one other person, we made it with ease (even the 40 steps down onto the beach).  The 45 minute tour went fast and soon we heading back up the steps and the path.  We rested halfway on some seating, only to be escorted back to the top of the hill (apparently although there is seating, you are not actually allowed to stop and use it!)

The following day brought a bad night's sleep for Mark and he was in no shape to go out.  Reluctantly, I left him home armed with enough supplies for lunch, a cup of tea and him sitting outside on the balcony admiring the view and the fresh air, while Sebastian and I headed into Kingscote for food supplies and lunch.  The rest of the day was spent at the house as we watched the bad weather come in and remind us that winter is almost here.

While we enjoyed some lovely moments together, the picture I had in my mind of a perfect family holiday was not to be.  But we did the best we could and we still managed to get to the Marron Farm (seafood platter with Marron) and Dudley Wines (gourmet pizzas) for the only culinary lunches offered on the Island.   Overall, under the circumstances, Mark did famously well as did I with all the driving under sometimes trying conditions.

Arriving home Sunday evening left me no time to purchase food or prepare for a week of school and college, but I managed to scrape together enough for a healthy dinner and enough for Sebastian and Mark's lunch the next day.  That night I fell in to bed exhausted, but again, proud of my achievements, Sebastian blissfully unaware of his father's diminishing condition.

As I packed for college the next day, I decided I would prepare and pack everything for the day, so Mark had little to do.  Once in the city, I took my time, knowing I would be late, but also making sure I had what I needed such as a healthy breakfast and good coffee.  Arriving to class 10 mins late, I enjoyed my breakfast in class rather than taking notes and I was unusually quiet.  After only an hour, the lecturer stopped the class and called an early break.  She immediately approached me and asked if I was ok and how my husband was.  I had advised her very early on of my situation and she understood as she had lost a husband to a terminal illness many years ago.  Her kind words touched me and I could no longer hold back my devastation.  She quickly took me outside and my two college friends soon followed.  The more they hugged me the more I cried.  This was all so new, I had only spoken to one person about it last night.  So many thoughts rushing through my mind, my assignments, only a few weeks of study left for this semester, needing carer support, wheelchairs, ramps, showering aids....OMG, is this really happening?

My lecturer insisted I leave the class immediately and she would not allow me to stay.  She had all my assignments extended and told me I was to spend the time with my husband and not at college.  So I left, made a trip to Hahndorf to get some homeopathic medicines for Mark, quickly visit my Mum, food shop and be home in time to make Mark's lunch!  That was yesterday and today I refocus with a new set of goals and a new set of needs.  With the pressure of study off my shoulders, I can focus on what I need to do next to ensure I get the professional support I need, that Mark's needs are met and that I don't burn myself out. Onward and upward...

Post Number 31 - Learning to Change

“I wanted to share this chapter from the book “AntiCancer: A New Way of Life”, which I have recently read and have learned so much from. This chapter is titled “Learning to Change”, and shares the story of one medical professional diagnosed with “incurable” cancer who learned that healing doesn’t just happen through medical intervention, but through helping the body and mind to work together to bring peace, happiness and gratitude into his life. I think this chapter applies equally to everyone, not just someone facing a life-threatening illness. I hope you enjoy reading it and gain something from it.” - Mark T


CHAPTER 12 – Learning to Change

As we have seen, while cancer can be triggered by any number of factors, it can only develop and spread if the terrain is favourable. There is no way to prevent cancer or slow down its growth (once it has already taken root) without changing this terrain in depth. Basically, seeing our response to cancer as a war or even a combat may not be the right metaphor. Rather than fighting insurgents, we may be better off changing mentalities. Our guiding principle, above all, should be to bring more awareness into our lives in order to change our attitude and that of our cells. But to what extent can we really change? One of the world's greatest cancer surgeons, William Fair, MD, experienced this inner revolution against his will.

Dr. Fair's Transformation

A specialist in prostate and kidney cancer, Bill Fair was head of the prestigious Department of Urology at Memorial Sloan-Kettering Hospital in New York when he learned he had colon cancer at a very advanced stage. After two operations and a year of intravenous chemotherapy (which didn't prevent him from operating several times a day), his tumour returned. This time it was even more aggressive, so aggressive that his doctors, chosen from among his hospital colleagues, told him sadly that his cancer was now "incurable". In their opinion, he had only a few months to live. Bill Fair was too "emotionally shattered" to react, as he later recounted. His wife, a former nurse in the armed forces, took things in hand. She told him the time had come for him to look after his "terrain." Spurred on by his wife, this workaholic, who was on deck seven days a week and often worked thirty-six hours at a stretch, took up meditation and yoga. Instead of grabbing a bite to eat at a fast-food counter in the hospital cafeteria, he was initiated to the benefits of a vegetarian diet. As a prominent member of the Western medical elite, he had never taken an interest in what the worlds other medical traditions had to offer. Now he asked to meet researchers who had started a program investigating traditional Chinese medicine at the National Institutes of Health in Washington. This transformation was anything but easy. With his sharp mind, his biting tongue, and his characteristic surgeon's arrogance, Bill Fair had long cultivated a profound contempt for all these "alternative" approaches. His son remembered his former references to "touchy-feely West Coast nonsense."  Summoning up her courage and a great deal of patient kindness, Fair's wife finally convinced him he had nothing to lose. He could approach these other ways of looking at life with the mind of a researcher. He could keep what worked for him and leave the rest. He could preserve his critical mind and at the same time listen to his explorer's instinct. Bill Fair went along with it. Very haltingly. For example, after a training program in California on relaxation, he jumped on the red-eye to New York the same night because he wanted to be back at work early the next morning. But little by little, with yoga, meditation, a careful diet, Bill Fair changed. From the overbearing surgeon, from the authoritarian researcher and self-assured author of more than three hundred articles published in international cancer journals, he calmed down. He became a gentler, friendlier man. He learned to carefully choose the people he would spend time with, and in turn he would give them all his attention. Impressed by what he found out about himself, about his new relationship with his body, his mind, and the people around him, in a few years Bill Fair became the person he basically would have always liked to be. He was asked three years later what he thought of the benefits of this approach focused on improving the "terrain." Benevolently, he answered, "I've already lived three years beyond my colleagues' prognoses. As a scientist, I know that doesn't prove anything; it may just be luck. But there is one thing I'm sure about: I don't know if I extended my life, but I certainly expanded it."

His whole life Bill had been under pressure to be the best among the brightest, and to hold on to his hard-won place at the top of one of the greatest medical and research institutions. He had loved his work, but, at heart, he hadn't liked that brutal, intense style of practicing it so common among surgeons of his rank. He had girded himself with a sort of armour so as to function in an environment where categorical judgments are tossed around like so many blows and where you learn to give as good as you get.

His disease had given him the opportunity to discover approaches he had long despised. They had brought him peace and well-being. These mattered a lot to him now. He felt as if he were unloading himself of whole facets of his former personality. He learned, like many other patients, to pay more attention to what really mattered to him, independently of others' judgment. He no longer had to play the role of "brightest in the class." Bill Fair never renounced his passion as a physician or his scientific rigor. He continued to underscore the importance of conventional cancer treatments. He insisted that complementary approaches had to undergo strict evaluation. But, month after month, he became more genuine, more patient, and gentler. More receptive to the mystery and the richness of life.

Little by little, Bill Fair became a defender of these new approaches. He wanted them to be integrated into teaching and treatment programs. He organized a dinner for several deans and some of the principal oncologists of New York medical schools, so that they could meet one of the most respected American activists, Ralph W. Moss, a science journalist and an ardent promoter of complementary methods in oncology. In the course of the dinner, Fair leaned over to Moss and said: "I imagine ten years ago you would never have dreamed you would one day find yourself at dinner with these people." The activist answered: "Ten years ago, I would never have dreamed of finding myself at dinner with you, Bill. Bill Fair had indeed changed a great deal.

The path Dr. Fair followed is open to whoever may decide to take it. Hemmed in as he was in a culture that systematically denigrated that personal quest, this change was more difficult for him than for anyone else. If Bill Fair was able to transform his attitude toward life so radically, we must all be able to follow his example.

Changing Personalities?

At the University of Toronto, the psychologist Alastair Cunningham, PhD, has been looking after groups of cancer patients for thirty years; he teaches relaxation, visualization, meditation, and yoga. He helps his patients find the strength to become themselves, to draw as close as possible to their deepest values. He often works with patients considered "incurable," who have been given only a few months to live. By following them systematically, he has identified the attitudes that help predict which patients will have a chance of living far beyond their prognoses. Some of the patients he has followed from this group have outlived their prognosis by more than seven years. His studies suggest that these are people who, perfectly calmly, have asked the fundamental questions "Who am I really?" and "Where do I want to go?" Then they have drawn the consequences. One of his patients put it this way:

Cancer sort of shifted the way I was developing in life and the goals I was pursuing… I was totally focused on building a “bigger me.”… I was sort of following what our culture says is the approved path and then when I faced the fact that I might not live very long, I realized that all of that would die ... and I started to question who I was really, if all that went.... It seemed like the whole focus of my life then shifted. [And now] I think I would be able to experience life today more fully [and]… to accept life as it comes to me and be part of that and just enjoy.

The closer Alastair Cunningham's patients got to their true values, the less constrained they felt to act only for the sake of propriety, or out of obligation, or for fear of causing disappointment and losing the affection of others.

Another patient says:

I was one to follow the rules quite a bit and please everybody; I think I feel more comfortable with my place in the world now than I did before I was diagnosed. Definitely.

Most of them then discovered a real pleasure in making choices they hadn't allowed themselves up until then, and even in saying no. A third patient whose survival was exceptionally long:

Now I even say no, but before I would've been paranoid to say no. Now I can say, "No, not today, that doesn't suit me." … And there was no guilt when I made the decision not to go back to work next year… It's not what I want to do… I'm very happy with what I do now, and it's much easier to make a decision on the spur of the moment, and go to see a movie because you feel like going to see a movie, or sitting down and trying to sketch even though you know you're not good at it but it's so peaceful and pleasant. That's all.

What these patients have succeeded in doing in their lives, Cunningham comments, is ridding themselves of their "type C personality", of always trying to avoid making waves (see chapter 9). Rather than going through life passive and submissive, little by little they have learned to appropriate their freedom, their authenticity, and their autonomy. Cunningham calls that "de-type-C'ing" themselves.

This change is also visible in the way these patients approach their treatments, including their way of stimulating their natural defences. I asked Dr. David Spiegel what was different about the three women in the support groups who had survived their metastatic cancer for more than ten years at a time when available treatments had little effectiveness. He described them this way: They didn't stand out; they often remained calm and silent. But they had very specific ideas about what they would or wouldn't do to help themselves. They accepted certain treatments and refused others. They seemed imbued with a quiet strength.

This attitude of awareness and freedom of choice applies to natural methods too. Whether it's a question of diet, or yoga, or psychological support. These approaches are not all equally valid for everyone or at all times. On one day the most beneficial method will be meditation; on another, keeping a diary; the day after that, exercise. What we recognize in these exceptional survivors is their clear-eyed capacity to say "This is what I need now" and, firm but flexible, to move forward in their lives.

This change often amounts to more than learning to say no and asserting personal choices. Patients who have managed to survive for a substantial length of time have a strength buttressed by another attitude that is also often new to them—gratitude. They have become capable of perceiving another dimension to life that had escaped them earlier. As if a sort of x-ray enabled them to see the essential through the fog of the ordinary. One of them explained, for example, that one evening at dinner his wife and children started to quarrel. It was a familiar scene that never failed to exasperate him. But on that particular evening, instead of feeling angry, he saw all the love that was flowing around the table. If their feelings flared up, it was basically because they each cared so much about what the others thought. The affection that sustained this family suddenly seemed so palpable that tears came to his eyes and he was overcome with gratitude.

I experienced some of this same gratitude years after my separation from Anna. We had settled our painful divorce, after the legal process had dragged on for three very difficult years. We were sitting, again, at the kitchen table in the small blue wooden farmhouse we had lived in together in Pittsburgh. The crackles of a fire in the cast iron stove filled the silences when we could not find words or even really look at each other. Sacha, now eleven, was playing by himself upstairs. I had loved this kitchen, this fire, the garden outside where I planted almost all the trees with Sacha looking on. And I had loved this woman. Then the words came. I was able to say that if that divorce had been so difficult, it was perhaps because a big part of me still loved her and loved what we had created together. That behind what I may have done in anger there was mostly my pain. As I could imagine hers too. And that now I was grateful for this love that remained between us, a love that would help our son grow. She did not say much, only wiped a few tears that had started to roll down her face. As I left the house —again— she put her hands on my arms, smiled shyly, and said, "I love you too." We had parted.

You found it! If you are reading this, let me know something in your life that you are grateful for, or that you have learned from this chapter. Leave a comment below, or send me a message directly. - Mark T

In the end, the best protection against cancer is a change in attitude arising from the process of growth valued by all the great psychological and spiritual traditions. To describe the very foundation of the life force, Aristotle speaks about "entelechy" (the need for self-fulfilment that starts with the seed and comes to full fruition in the tree). Jung describes a "process of individuation", transforming the person into a human being different from all others, capable of fully expressing his or her unique potential. Abraham Maslow, the founder of the human potential movement, refers to "self-actualization". The spiritual traditions encourage "awakening" by developing the unique — in other words, the Sacred — in the self. It is very important that we define our most authentic values and put them to work in our conduct and in our relationships with others. From that approach springs a feeling of gratitude for life as it is—and our body, and its biology, basks in its grace.

* Bill Fair's ideas and his transformation have been discussed in several publications. One of the most noteworthy was a piece in the New Yorker by Jerome Groopman, MD, a professor of medicine at Harvard Medical School and a writer.3 1 met Bill Fair myself in Washington in October 2001, three months before he finally succumbed to cancer. He had survived four years longer than his doctors' prognoses.

Don’t forget to send me your thoughts. Mark
 

Post Number 30 - What we Need

There have been many people who have been wanting to help us through this difficult time, so I wanted to document all the things that are positive contributions to our life.  I thought this to be a better way to share our needs, rather than contacting people individually and asking, or continually relying on a small number of people who have turned their own lives upside down in order to accommodate our needs.

My hope with this post is that you can gain a better insight to what our needs are, and if you are able to contribute in some way, small or large, know that it will be greatly appreciated.  For those people who have already contributed by looking after Sebastian while we travel to Sydney, or visit Mark on a Monday while I am at College, I can't thank you enough. I know I have not personally thanked you all, but please understand that the time that you took out of your own busy lives, to spend a few hours with Mark is appreciated more than you realise.

So here is a list of things that make a positive contribution to us and a positive healing environment for Mark;

Mondays - Spend some time at our place with Mark while I am at college.  You can bring work, use our internet connection or bring any other things to do.  Spend time just hanging out with Mark, but expect that he will need to have some quiet time as well. I understand that this is a big ask and that many of you work, study or have families to look after.  But if it is at all possible for you to spend any time, even if it is a few hours, it is of great need and benefit.  Mark should not be left home alone all day and my study at Endeavour is of the greatest importance and relevance.  There will come a time when I will need to re-enter the workforce and this degree is what will provide that opportunity.  I have this Monday covered, but there are still 8 Mondays left in this semester (not including Easter), so if you can slot in to one of those days, please, please, please let me know.

 

Ride to the airport on Wed morning around 10am, on the 25th March. This will be our next trip to Sydney for Mark to receive another round of Acupuncture by the Chinese Doctor.  If you happen to be available on this morning to drop us off at the airport, it will save us a lot of money in car-parking costs.

 

Have Sebastian for a play date, either a short one after school or a longer one over the weekend.  Saturday mornings are good, or a Friday night sleep-over even better as I drop Mark at Yoga at 8.15am and then drive to Willunga Markets to purchase fresh, local and organic produce for our weekly meals, usually returning around 10.30-11am. 

 

Home grown produce - any produce that you have grown in your gardens that you have spare would be very welcome.  According to Mark's Chinese Doctor however, he is not to have pumpkin or eggplant (which is a bugga as that is what we have growing in our garden).  His super-foods however, which will help his body to heal are sweet potato and figs (fresh or dried).  So if you have either of those growing and you have spare, we would greatly appreciate any that you may have. We also use a lot of lemons in our everyday cooking. 

 

Free Range Eggs - if you have chickens and you can spare some eggs, we would love to receive them.  Also more than happy to pay for them too, providing you have happy chooks who produce happy eggs, we are happy to pay! 

 

Flowers or cuttings from your garden.  Anything from nature that can be put into a vase would be lovely.  It helps to create a nicer indoor environment and a closer connection to nature inside the house, but please, no potted plants. 

 

Nuts - all nuts are good except pine nuts, providing they are raw or dry roasted and not covered in sugar or other flavourings.   

 

Herbal Tea - Mark tends to drink a lot of green tea, but also enjoys different flavoured herbal teas.  There are some beautiful leaf teas available these days, especially at market stalls.

 

Short visits from friends or invitations for a short get-together.  The three of us are all in a very good headspace and are more than willing to spend time with people who wish to share their love and support.  You are also welcome to come and visit us, phone, email or text, but with the understanding that Mark can only handle 1-2 hours of socialising.  If you do prefer to come to our house, know that he may just leave the room and spend some quiet time to recharge.  He feels uncomfortable with lots of noise and he may need to walk away if it overwhelms him. Don’t take it personally, just understand that he is simply taking care of his needs and allowing his body what it needs. I am also open to catching up with friends, albeit for short periods.  It is important for me to look after myself and the odd coffee with a friend, a brunch or a lunch date is always good for the soul.  Again, it will have to be brief as I can't leave Mark home alone for long periods of time.

 

Things that are not helpful and we would rather not have;

 

Chocolate, sweets, cakes or sweet treats.  All cancers feed off sugar, so anything sugary is not helpful to Marks healing (or my waistline).  I know it is a very common thing to give a sick person a box of chocolates, but the evidence is very clear that sugar suppresses the immune system and creates inflammation in the body.  Watch and see if your kids get sick just after Easter when they have overindulged in chocolate!!

 

Advice/information about alternative cancer treatments i.e. Mushrooms, curcumin, medicinal cannabis etc.  UNLESS there has been specific evidence related to brain cancer.  Cancers in the body are VERY different to cancer in the brain and I am yet to find any treatments that have helped in the area of brain cancer with the exception of the treatments offered by the Chinese doctor who we are already seeing in Sydney.  He has had some success in this area and hence why we are going to such lengths to travel to see him on a regular basis.  His treatments are expensive as is the cost of travelling as well as the personal cost of leaving Sebastian behind and burdening our friends to take care of him.  But, if it gives us a chance to have Mark in our lives a little longer and if the quality of his life remains such that we can create happy memories, then we will move heaven and earth to get there.

 

Thank you again for your thoughts, prayers, cards and contributions.  I know we still have a very long road ahead, but with many hands, the challenges seem very achievable, worthwhile and rewarding for all concerned.  Life is amazing and we continue to be thankful each and every day for the gifts that life brings us.

 

 

 

Post Number 29 - Making a Choice

Today's post has been written by a man who is my best friend and who I look up to with the greatest of admiration and love.  His continual growth as a human being is truly inspirational and I feel like the wealthiest and most blessed person on this earth.  Our life is so rich, so happy, so present and so beautiful and this post may just give you a little glimpse of why this is so.  In the words of one of the most intelligent people in the world (Stephen Hawking) "Where there is Life, there is Hope".

I hope you enjoy the following post written by the love of my life, Mark...

It’s been a couple of weeks now since the last blog post, and I can imagine that you are wondering how we are all doing but are perhaps not sure whether to reach out, or to give us space.  I’ll go into more detail later, but rest assured that I am feeling fantastic and am now living every day with purpose and meaning, and while I do feel more tired at times and need to rest a bit more than before, I don’t feel like a “sick person”.

As you may be aware, further surgery is not possible due to the location and spread of the tumour, and radiotherapy is out because it can only be done once when it comes to treating the brain. Which leaves the medical system with only one other option – chemotherapy.

Before we left for Sydney, we met with a Chemotherapy Oncologist who explained the “options” to us – in short there is a drug called Temozolomide, which comes in tablet-form, which may help to slow down or stop the spread of the tumour in some cases, but would not reduce its size. And even if it worked initially, over time the tumour becomes resistant to the drug and would continue to spread. An alternative drip-based chemo drug could then be used as a fall-back.

With that news we left for Sydney, with a follow-up appointment with the oncologist when we returned so that he had time to prepare a treatment plan and discuss it with his colleagues.

On our return from Sydney, it took us (well, me at least) a couple of days to get back on my feet again. It was a busy time, and by the end I think we were running on adrenalin only, with nothing left in the tank. Initially I was fearing that the tumour was spreading at an accelerated rate, but through the work and learning gained from the “Quest for Life” retreat, I put into practice many of the techniques learned and made sure I got plenty of rest and was taking care of myself properly. Within a day or two I had my energy back and was starting to feel really well again, being able to get out into the garden at home and potter around doing small jobs here and there.

In the lead-up to the appointment with the oncologist, I started having questions pop into my mind about what chemo would involve; things like side-effects, how do we know if it’s working, more information on studies of its effectiveness etc. I really wanted to know more about the whole process so that I could make an informed decision for myself about whether this was the right option for me.

When we went to the appointment I spent most of the time going through my questions and asking for the information that I was looking for. The oncologist emailed me some information about the Temozolomide drug, and explained some of the risks with any form of chemotherapy. I imagine a lot of people walk into appointments like that, and would take the path recommended to them without question, and not that long ago, I probably would have done the same. But I listened to my inner voice that was telling me ‘Do some more research before deciding’.

So I read through the information provided by the oncologist, studied the side effects, the drugs used to manage the side effects, and then did a lot of reading of clinical trials that had been done with Temozolomide. I then collated my findings and made a pros/cons list to help distil all of the factors that were important to me into a shorter list.

In short there were two key factors for me that made this initially big decision a fairly easy one to make:

·         When effective (only about a 30% chance), it may increase the progression-free time of the tumour by a few months, but importantly, this had almost no statistical impact on overall survival time.

·         It is a strong immune-suppressant, so if I start on it then I am at high risk of catching even mild bacterial infections, particularly in the lungs. This could then limit my contact with friends, family, my son and the general public through fear of catching something.

It came down to the choice of taking a drug that will make me feel sick and awful, and in the end, have no real impact on how long I live (but it would have significant negative impact on the quality of my life). Is a couple of extra months really worth it? So I decided there and then that I will not be going down the Chemotherapy path!

Shortly after making the decision, I knew that my family needed to hear about this in person, so I booked a flight down to see them and explained my decision to them. This is why we have been holding off on posting any more updates until now.

Does this mean that I’m now doing nothing to improve my chances of living a longer, happier life? Absolutely not! My life now is about quality, and making the most of every day - doing things that have meaning to me. Just yesterday I took a bike ride down to the shops, and enjoyed just being out in the fresh air and sunshine. I am learning all the time about the importance of good nutrition (and sorting through all the conflicting opinions and half-truths that go along with it!). I am doing meditation and relaxation exercises multiple times a day to keep my mind clear and focussed on living for today, and not having regrets over the past or worrying about what may lay ahead. I could write a whole other blog entry on the power of the mind, but this post is already quite long!

I am reading inspiring books, and there is one in particular that I wanted to call out:

“Anticancer: A New Way of Life” by David Servan-Schreiber

What made this book so striking for me was it was written by a researching Neuroscientist who discovered almost by chance that he had a brain tumour, and this is his story about the research he did into his own case and things that can trigger cancer, how our diets have changed radically in the last few decades, and also ways that we can reduce the risk of, slow down or sometimes reverse cancer growth. It takes a holistic approach to prevention and healing, but is also backed up by scientific research, and has been quite eye-opening so far.

I am not under any illusions about a “miracle cure” with my diagnosis, nor am I thinking that “If I just stick to this diet or meditate three times a day, I can cure myself”.  It’s about making the most of the hand I have been dealt by taking care of myself physically, emotionally and spiritually, and being at peace with whatever lies ahead.  

I choose to look at my situation with the attitude “I am living with cancer, and I choose to live my life as well as possible”, rather than “I am dying from cancer, there is nothing more I can do”. It is about recognising that even in our most trying of times, we are always able to make a choice – a choice that is right for us, not what we think others expect of us. There are times when this belief can falter, but I feel that I have the tools now to bring myself back to living in the present rather than worry about what may come in the future. Today is a great day because I am alive!

 

 

Post Number 28 - The Journey to Sydney

We have been in NSW now for 10 days and we are more than ready to go home and be reunited with our little man.  The trip has been expensive yet incredible, eye opening, confidence building, inspirational, healing, learning, gratifying and filled with giving and receiving love.

Our journey began last Thursday when we dropped Sebastian at school and hugged him goodbye.  Emotions held back until we bid goodbye to Mark's family and boarded our plane to Sydney.  We were a little apprehensive and yet confident that we had made the right choices and we were about to embark on a special adventure..

Once we touched down, we used public transport to get to the CBD and then out to North Sydney.  At Chatswood station, our "Airbnb" hosts picked us up and took us to their amazing home.  It was a long journey, but we made it and we were pleased and proud of our achievements.

The next morning our hosts cooked us a special breakfast and then took us directly to the Chinese Doctor, waited over an hour for us to be finished and then brought us home again. We couldn’t believe just how generous these wonderful people where to us.  The appointment went well and a treatment plan was arranged and the acupuncture started.  Mark also had a session with the Chinese Physiotherapist who taught him some Chi Gong which he is to do twice a day to help move blood and lymph around the body as well as stimulate the immune system in between treatments.

 Another two treatments were completed before we left Sydney to head to the countryside, in the direction of Canberra, to begin our "Quest for Life" retreat/workshop.  By now we had begun getting quite comfortable with using the public transport system as our hosts couldn’t possibly take us to every appointment.  We purchased prepaid cards and felt comfortable getting around, especially when using "phone apps" that map out the routes and provide up to date timetables.

The train ride to Bundanoon  was peaceful, smooth and very enjoyable.  We ate our lunch, read books and the two hour ride flew by.  Again we were picked up at the station and taken to the retreat, which was literally only 100 metres away.  I had felt anxious all day and once arriving at the retreat, my anxiety levels peaked and I wanted to run away. 

We were shown to our room and left to settle in, the program starting in 2 hours.  I couldn’t explain why I felt so uncomfortable, but somehow I felt overwhelmed with uncontrollable emotion.

Words can't explain the experience we had at Bundanoon, but I can say that layers of ourselves were slowly peeled away and we uncovered our true selves.  We shared a special bond with the most amazing people and we learned how to love and trust in ourselves. We learnt about the physiology of the body and how we can make positive changes to the chemistry in our body through meditation and living in the present.  This week has been one of those pivotal moments you have in life.  A time when you are faced with a crossroad and you choose the path you wish to take and commit to it.  Life will be different now and it will take work, dedication and commitment, but the result is and will continue to be rewarding, fulfilling and give peace to what would otherwise be a traumatic time.

We now feel so happy, so fulfilled and ready to face whatever comes next.  Mark has been so very well the entire time we have been away. He has been sleeping well, sometimes better than me and every day has been a mini marathon either physically or emotionally, but he has handled it all with smiles, enthusiasm  and optimism.  And now, we just want to get home and hug our boy until we all fall down…and then hug him some more.  He has faced his own challenges, but just like his father, he has handled them with the grace of a boy far greater than his years.

The future now looks different, regardless of diagnosis and we will continue this journey in the knowledge that every day is special and every day is a gift.

 

If you would like to know more about Quest for Life and the incredible work they do, or you would like to make a donation, please visit; http://www.questforlife.com.au/

 

Post Number 27 - The Healing Plan

So much has been happening in the last two days, I felt I needed to write a blog just to document it all.  Once I finished writing my last post, answers started presenting themselves, one after another.  In looking for a Traditional Chinese Medicine doctor, I found many, but none who seemed to specialise in Cancer, let alone brain cancer.  I did however, find one in Sydney.  But how would I know if this doctor could really help or if all the testimonials on his website are just fake?  I didn't want to spend all our last dollars and leave Sebastian behind to chase some "miracle doctor", only to find him to be a quack!

But then I came across a document that was a letter written to Parliament House from a cancer survivor who had experienced amazing healing and recovery from several cancers around her body, including 7 tumours in her brain.  She listed this same Sydney Chinese doctor who I was planning to contact, as well as my lecturer at college!  What are the odds of that? This was all the evidence I needed to proceed as now I knew this was the way forward. 

Immediately I booked an appointment with the doctor, one way flights to Sydney and accommodation through Airbnb.  Again, things fell into place when I found the most amazing hosts who work in the Natural Health industry, have a home setup like a health resort and charge only $110 per night!  They will also pick us up and drop us off to the train station at no charge.

I had also been looking into a wellness retreat set up by a woman named Petrea King.  Again, this information came from one of my study webinars and I quickly wrote down her name and began researching.  She was diagnosed with end-stage leukaemia back in 1989 and after healing herself and writing a book, she set up a wellness retreat in Bundanoon, NSW to help others with terminal illness, dealing with grief or post traumatic stress.  She still attends each retreat and takes some of the healing classes herself. Again, as luck has it (you know I don't believe in luck) the February retreat for Cancer patients was scheduled to start the following week.

My original plan was to book Mark in to the week long retreat while I fly home to Sebastian and then book a second treatment with the Chinese doctor for him, as he will initially need weekly treatments. But that meant he would need to find his way back from the Sydney central station, to the doctor's rooms, and then get himself back to the airport and fly home by himself.  I felt very uncomfortable with this, but could I leave Sebastian for so long and could we really afford for me to attend the retreat as well?

The more I thought about it, the more we talked about it and finally, in consultation with Sebastian, the decision was made; I would stay with Mark and attend the retreat also.  There are already many couples booked for this February retreat and it will most definitely help me to sleep better, deal with grief, if and when that should occur and give me some sound life lessons in meditation and looking inside myself.  It will also mean that we will learn together and come home stronger and united, understanding the same principles that are taught at the retreat.  Sebastian assured us that he will be fine and if it meant that Dad may get better, then it was worth the time apart. 

So with the plans all made and booked, my next challenge was the mountain of paperwork I needed to fill in for Centrelink and our mortgage insurance.  This literally took a good part of the day and I also spent over an hour with our wonderful radiation oncologist as many parts of the forms required doctor's input.  It seemed like an endless number of questions that ranged from "what was Mark's schooling and qualifications", to "how many visits to the doctor" has he had to "when is he expected to return to work".

Finally, the last of the documents were completed and all Mark needed to do was sign them.  He didn't need to read them as he knew that he could rely on me to do what was needed.  He is starting to slow down quite a bit now, spending more and more time "resting" which is concerning.  Yesterday he spent most of the afternoon either lying in the hammock or lying on the bed dosing. He is just tired a lot of the time and although he is getting some sleep at night, it is often disrupted by several trips to the toilet due to the medication.

More things starting falling into line when my lecturer also offered to help us and work together with the Sydney doctor via online consultations.  I received a phone call from the Chinese doctor and he asked many questions and believed it was urgent that we come.  Mark will most likely be having chemotherapy as well and this treatment will be done in conjunction with the Chinese treatment.  The two treatments will work together along
with the skills and techniques learnt from the retreat.  He also mentioned another Chinese naturopath doctor with over 30 years' experience, who lives in Tasmania but travels monthly to Adelaide and he would ask for her help also. 

With the path to healing paving itself so effortlessly, one can't help but believe that everything is happening just as it should be.  Yes it is still worrying of course.  Yes, Mark has been diagnosed with a terminal illness and should not see his son grow up. But what if??  What if, with all these experienced practitioners, working together...why shouldn't we have some hope? I have no more tears, only strength and determination to move forward.  There is no longer this feeling of hopelessness and grief.  Sebastian now knows what is happening and he feels our strength and our hope.  At first I thought he didn't understand the gravity of the situation, but when he said at lunchtime on Thursday "I hope Daddy doesn't die", I guess he really did understand.  I reassured him that we were doing everything we could to try to make Daddy better again, but if he did die, then we still have each other and we have our beautiful home, our dog Else to protect us and all our friends and family who love us and will do anything to help us.  "We will be alright", I assured him.  "We will cry an awful lot, but we will be alright."

Us with Bob & Debbie at a Sprout Cooking class this week.  They will be Sebastian's guardians while we are away and I know they will love him and treat him as their own family.  He will be in excellent hands.

 

Links:  Letter to Parliament House by Cancer Survivor;

http://www.aph.gov.au/~/media/wopapub/senate/committee/clac_ctte/completed_inquiries/2004_07/cancer/submissions/sub55_pdf.ashx

 

Quest for Life, Health & Wellbeing Retreat;

http://www.questforlife.com.au/

 



Post Number 26 - Surgery is Not an Option

Firstly, I need to express how overwhelmed we are by all the love, generous offers of help and the sadness that everyone has expressed since my last post.  I know you want answers, so hopefully the title of this blog gives you the short answer.

But I want you to know, while we have cried a river, we now feel strong and ready to move forward.  Last Saturday night, we celebrated Valentine's Day.  Now I know that it wasn't the 14th of February, but for some reason, and nothing to do with our current situation, I just thought it was last weekend.  I have been enjoying the new season of MKR and had come up with some menu ideas.  You see, for the past few years, we have celebrated Valentine's Day by cooking up a 3-course dinner at home and expressing our love for each other and our love for good healthy food.  This year, we decided we would celebrate alone and organised for Sebastian to have a sleep-over. 

We started the day with our favourite Saturday morning breakfast of Eggs Benedict with Salmon, and then took Mark to Yoga, so he could complete his final session and say goodbye to his instructor.  He had been very dedicated to his yoga for the past 18 months and rarely missed a session.  Sebastian and I headed for the supermarket to buy all the ingredients for our special dinner.  Sebastian has been so wonderful.  Helping out, not complaining and giving lots of hugs and random "I love you".  We shared a cold chocolate and then headed home to unpack and then pick up Mark again from Yoga.

As it was a really hot day, we spent the afternoon at Mitcham Shopping Centre where we enjoyed lunch and the Paper Planes movie.  Once home again, Sebastian was totally excited about his sleepover and couldn't wait to leave. Ten minutes later, the house was quiet and we were left to open a wine and plan the cooking of our dinner.  But as we started sipping our wine, we started expressing our feelings for each other, for the situation, for how we were going to tell Sebastian and what we thought we should do next.  Before long our deepest thoughts and fears spilled out.  We cried a lot, but we also expressed it ALL!

Feeling emotionally lighter, we started cooking and our first course came out effortlessly.  Potato and Zucchini Rosti stack with Salmon and Cream Cheese filling.  We set up a table in our front room (usually reserved for our guests) so that we may watch the sunset and enjoy the cool air-conditioning.  We played music while we cooked and we just enjoyed being together and of course, eating!!

Second course was a Pepper Steak Roast with Horseradish Sauce, Brussel Sprouts & Chorizo and smashed pumpkin.  Now I know you are probably thinking, what...red meat??  Well yes, we do enjoy an occasional piece of really good quality red meat and this was the first time this year we had eaten something like this and it was truly wonderful, tender and cooked to perfection.

Last course was a Chocolate & Raspberry Chocolate Cake with Homemade Ice-cream.  A perfect finish to a perfect and healthy meal.  Even the ice-cream was made by simply blending frozen bananas, frozen mango, raw cocoa powder and vanilla.  So easy, so delicious and nothing nasty.

The evening was so perfect, we forgot to look at the sunset!! We had closed the curtains for our first course as the sun was strong, hot and unbearable, with the intension of opening them again to watch the sky turn red.  After dinner we sat on the balcony and talked and talked.  We laughed and remembered the times when we first met, when we finally decided to become a couple and the joy of having our little baby boy.  Our lives together over the past 10 years have been rich, full and productive. 

Sunday brought about a different set of challenges.  If you know Mark, you know he loves his car and he has been trying to install new racing seats into "her" for many months now, but that's another story.  Anyway, he had also been waiting months to take his car to a special workshop for a service and to review some performance issues the car was having.  Less than two weeks ago the service was done and one car seat had been installed while the other sat in his office waiting.  So I decided to help him to put in the second seat, with the intension of then going for a drive down the coast.  That seat was a job and a half and it took quite a while and even needed some yoga skills to get in underneath the seat and bolt it all in securely.  Sebastian grew tired of waiting, bored and grumpy and we grew more frustrated, tired but also determined to get it in.  Finally...success!

The boys washed the car and made it shine, but by now we had lost the desire to go for a drive and Mark was feeling tired.  Late in the afternoon, I finally dragged everyone out of the house and we headed down to Brighton for some Fish & Chips on the beach.

Mark is taking Dexamethazone again and you may remember from years ago, this does not agree with him at all.  This steroid drug is a powerful anti-inflammatory and necessary to reduce the inflammation in his head around the tumour, but it keeps him awake at night and makes him tired during the day.  But with the aid of some sleeping tablets and our wonderful new memory foam mattress, he slept well and awoke Monday morning feeling bright and energised.  I took Sebastian to school, completed some work in my office and by 11.30am, we were on the road, in the "red rocket" heading south to Port Elliott with Mark proudly at the wheel.

The car performed well and we found a lovely spot for lunch before heading to the coastline to walk and "sit on a rock".  This is a very spiritual place for us and somewhere we go when life gets a little too difficult, decisions need to be made and the body just needs to stop and breathe.  We don't make the journey nearly often enough.  We talked, soaked up the warm sunshine and just sat in necessary silence.  Walking back to the car we stopped for ice-cream before heading home.  Another beautiful time spent together, feeling strong, focussed and ready.

So with Tuesday came phone calls to make appointments for surgeons and oncologists, but our favourite and most compassionate doctor (the radiotherapy oncologist) rang us later in the day to tell us that the news was not good and that surgery was not going to be possible.  Funnily enough, we had already almost made the decision to decline surgery as we knew that the position of the tumour would mean permanent damage to the left side of Mark's body, to what extent we didn't know, but it would be significant we were sure.  So basically the Medical Profession are out of options, perhaps chemotherapy, but it's a long shot at best.

So I have been looking into other options such as Complementary Medicine and since I am studying it, it makes sense to see if there is something that could offer some assistance.  As it turns out, Traditional Chinese Medicine can offer some help and as fate has it, one of my lecturers at my new college is a practitioner and knows many others in the industry.  So various emails and phone calls have been made and I now await answers.  Can we get help in Adelaide or do we travel to Sydney?  That I don't know yet, but I do know that Mark's family will be coming tomorrow, to support us and spend time with Mark.  Having them here will be a great help and will keep Sebastian company. 

We have yet to talk to Sebastian, and we nearly did last night.  He has been complaining of stomach aches and just feeling sad, but not knowing why.  Our son is very intuitive, just like his parents, so tomorrow and Friday he will stay home from school and we will tell him that his Dad is sick again, his family from Mt Gambier are coming and we may need to travel to Sydney to see a special doctor who may help.  It will be a lot for him, but we feel strong enough now that we can confidently talk to him and give him the love, strength and support he will need, to get through the next few months.