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!