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.

Post Number 25 - It' back and It's Ugly

Yes you read correctly.  Two years of happiness, love and bliss just came to a halt; like a truck hitting a brick wall!

In October we celebrated the last two happy years of life post-op.  We celebrated the good times, the miracles and the love that we share for each other. 

Christmas was also special and wonderful for so many reasons.  Mark's family came up from Mt Gambier and stayed with us. The house was full of people, busy and happy, just as I wanted it to be.  I couldn't have improved it if I tried. 

The summer school holidays brought us more happy times for the memory bank as we all had our special times together as a family, alone doing things we enjoy and one on one experiences with Sebastian.  I took Sebastian to the movies and taught him to roller skate and Mark took him to the Planetarium and the Birdwood Car Museum.  As a family we spent a week at the West Beach caravan park where we all enjoyed countless special moments.

Sebastian started school which such grace and maturity, he astounded even me.  After two very tiring days, he got into the swing of things and now comes bounding out of class at the end of the day, all smiles, arms outstretched ready for the biggest hug a Mum can give. 

Mark enjoyed a good two weeks off work and felt happy and ready to return.  With Sebastian at school and me starting at a new College in the CBD, he was planning an additional day of work (from 3 days to 4).  He had spent the last year working only 3 days a week so that he would have time to spend with me and Sebastian before he started school.  So with the new year, it made sense to add an additional day and still enjoy a 3-day weekend.

Yes... life has been so perfect, it was bound to come crashing down. 

One Saturday morning, Mark returned from walking the dog and upon his return, I went on my run.  When I got home 20 minutes later, Sebastian informed me that Dad was not feeling well and was laying down.  Before I could get to him, he emerged from the bedroom looking concerned.

He had experienced a weakness on the left hand side of his body, a tingling and twitching of his arm and leg.  This is classed as seizure.  It passed in 5 minutes and he felt fine again.  We progressed with our usual special poached egg Saturday breakfast and Mark decided he would go to his weekly Yoga class.  I warned him to be careful and not to push himself.  He smiled and left.

Later the following week (Thursday), Mark was spending the evening in his "Man-Cave" playing video games on his new X-Box.  When he came inside, he found me and said "Can I talk to you?".  I knew straight away, something was up.  He had experienced another seizure while in his room.

Now I was really concerned as he had been seizure free for two years and now he had experienced two in one week.  The next day I made phone calls to try to get him to a specialist who could order an MRI scan.  His last scan had been in July and he was not due for another until July this year.  I made all the necessary arrangements and in a whirlwind week, we revisited the wonderful Radio Oncologist doctor who ordered an urgent scan for two days time and another appointment for the results the next day. 

So last night we received the news that the tumour is back and it is nasty.  It's back in the same area as before but its tentacles have invaded a small area in the left side of his brain also.  Brain tumours are so different from any other cancer that presents in the body.  Usually a tumour is a mass of mutated cells that can often be removed.  Brain tumours look more like a jelly fish with a small mass and long tentacles that weave through the brain.  This is why, with a brain tumour, there is no such thing as remission-it almost always comes back.  When is anyone's guess, but more often than not it is between two and five years.  We always knew this, but held off on telling anyone as we did not want people to feel awkward or sad, but to celebrate and be happy that he made such a marvellous recovery.  I always hoped I would be writing this after five years of happy times.  At a time that I had completed my studies and we had experienced more family holidays and that Sebastian would be older.  I felt that with the correct lifestyle balance, we could defeat even a brain tumour.  But I guess we are not invincible after all. 

So I write this to you now, to inform you of our situation and will indeed, just as before, keep you up to date this way again.  I can not express just how distraught I am.  I have moments of strength, but I have sobbed harder and louder than I ever have in my life.  You know when you laugh from the bottom of your belly?  Well did you know you can actually sob from the bottom of your belly also!

As I write this, Mark is finishing up and handing over his workload and saying his goodbyes to his work colleagues. We have this weekend to spend our last family time together.  Next Tuesday the surgeons will review Mark's scans and make a decision from there, so at this stage, we know nothing more, but we are assuming they will do surgery, most likely, the end of next week if possible.

Once again I ask for you to hold back on writing me emails or sending me text messages.  I know by now you are probably shedding a tear, as am I and believe me, I will feel your strength and your love.  Perhaps if you are reading this from a link on Facebook, you could give me a "like", so I know you have read it and I will feel your love.  I promise you, I will keep you up to date, but I know this is going to be more difficult than ever.  Believe me, I WILL ask for your help if I need it and I WILL accept your hugs, when I am ready, but just not at the moment.