About Me

Thursday, 23 February 2012

Brussels here we come!

As I was out today on my daily walk in Sherbrook forest (I really do live in a beautiful part of the world!), breathing the fresh air and enjoying the sunshine, it occurred to me that counting your blessings does take practice and so important for your soul!

So often we dwell on the things that are not working for us, what we don’t have and what is not ‘perfect’ and we take everyday things for granted. Lets face it, we are all guilty of doing that from time to time..

So yes, almost one year after surgery I still need to use my arm sling for walks, I can’t do too long or challenging walks and yes pain is something that I am dealing with everyday (every hour in fact) BUT I am walking! And I am breathing and smelling and seeing the beauty all around me. And who would have thought one year ago that this is where I would be right now....

So going back one year- returning to ‘real life’ after the Gawler retreat, I was much more positive and committed to my new lifestyle but decisions had to be made regarding surgery and they had to be made quickly.

Whilst I was at the retreat, Ziv, my amazing brother in Israel did a lot of ‘ground work’ and has come in touch with a top Professor from Brussels who specialises in intramedullary spinal cord tumours (tumours that arise from cells within the spinal cord).

It just so happened that when Ziv contacted him - the Prof was actually in Israel, lecturing about these types of rare tumours.... And it just so happened that he was able to meet with my brother on such short notice.

It seemed that everything, all occurrence of events prior to finding about the tumour and after ‘just so happened’. Coincidence one might say, or just luck but much more than that in my view- almost like the path was revealing itself to me bit by bit, one thing leading to the other.

After Ziv met with Prof. Brotchi, we all had the impression that If I decided to have surgery- I should do it with someone who has a vast experience in performing this sort of procedure and Brotchi seemed like the man!

The Neurosurgeons I’ve seen in Australia had little experience, given it is such a rare tumour and in such a delicate area.

Decisions, decisions... so hard to make... I wanted more time... time to give myself a chance to try and heal without surgery but my symptoms were worsening and it felt too risky.

So a decision was made and all forces were gathered to raise money for me to go overseas for the surgery.

I have to say it was a very humbling experience to ask for donations- I felt exposed and even embarrassed at times but it was such a big lesson for me- to learn to receive gracefully, without guilt (oh the Jewish guilt, it’s built in!).

It was amazing to realise how much support I have behind me in the form of family, friends and whole communities. People have shown such kindness and generosity, all over the world.

It’s true that in hard times the true nature of humanity reveals itself!

It was a massive relief to know that all the money we needed was raised. It was one less thing to worry about and for that I will forever be grateful.

So there we were, Dave and myself, on our way to Brussels. It was the beginning of April 2011.

We met my brother, who arrived from Israel and we had one day to spend together before I was admitted to hospital. We spent that day pretending we’re just some ordinary tourists, checking out Brussels attractions (which are not many, mainly a little statue of a pissing boy...).

At that stage I was very determined to try and stick to my newly vegan alkaline diet, which proved almost like a mission impossible in Brussels. For some, Belgium might be a heaven of cheese, chocolate and beer but for me, it was a difficult task finding anything that I could eat.

We were fortunate that a couple from Israel who live in Brussels and have heard of my situation, have been so kind to help us out with getting us a juicer, blender, organic food and basically making our lives so much easier!

I was admitted to hospital 2 days prior to surgery for tests. I had my own room, which was quite comfortable and had a big window overlooking some fields.

The night before surgery I felt very calm, surprisingly. I said my ‘last’ goodbye to Dave and Ziv (who were more nervous than I was) and then I meditated, listened to music and slept really well. I felt ready (as you can be) and I had this sense of surrendering, knowing it is now out of my hands and that I’ve done everything I could to prepare for it.

8 am on April 5th I was taken to the operating theatre and the next thing I knew- It was 5 hours later and I was waking up. As soon as I woke up, I knew where I was and what had happened, which was a relief. I was then taken to the Intensive Care Unit and shortly after I saw Dave and Ziv. The first thing I asked them was if the tumour was removed and the answer was no. NO?! Not even some of it?! I couldn’t believe it, I felt disappointed and ‘cheated’.

But once the shock subsided, I realised that they really couldn’t touch my tumour without paralysing me and I was thankful for that. It was also a relief to know that I could move my hands and feet, as it meant that most likely I would be able to walk. They did make a bit more room for the tumour inside the spinal cord so that it wouldn’t be so squashed and hopefully wouldn’t block CSF liquid flow.

Even though I was heavily sedated, I was in a lot of pain and my neck felt like it has been crushed in a car accident (which it has, really, in surgery). That night in ICU was a night from hell. Thank God for morphine and other drugs, as I don’t remember much of it.

The next day I was moved back to my room at the Neurosurgery ward, which is where I spent the next 3.5 weeks.

The first few days after surgery were a haze of pain, pain killers (loved my personal morphine pump even though I was told off for not using it enough), daytime sleeps and night-time wakes but I started standing up and walking quite quickly and things were looking good.

But then I started having these really bad headaches and left arm pain and they found out I had an infection and a pretty rare one (of course! I seem to attract rarity into my life!).

It was a stressful time for Dave, as by then my brother was back in Israel and he felt alone and scared. It didn’t help that it was just before Easter/Pass Over and Prof Brotchi was on holidays... it also didn’t help that there was a language barrier.

Luckily, as soon as Brotchi found out what’s going on- he orchestrated a few of his top Neurosurgeons to run the show. My brother came back as well.

So because of this infection, I wasn’t going anywhere anytime soon as they decided to hook me up to an IV drip for antibiotics. The antibiotic started to work pretty quickly but the next 2.5 weeks being connected to this IV stand was hard work.... especially to someone like me who is already a bit clumsy. (Motorically challenged as I prefer it and in fact, now I can just blame my tumour for it as it’s likely it has been there since early teen years).

As well as having Dave and Ziv there with me, which was a huge support, I had the privilege of having another friend coming over for a couple of days from Spain and one of my closest childhood friends came over from Israel for a week. It was so nice to have some female support! Hila, my Israeli friend would come every morning and as soon as she entered my room she just knew what had to be done, and what I needed without me asking for it. We, women, are good at that aren’t we?

Finally came the day of discharge, I couldn’t wait to be out of hospital and we were planning to go to Israel for my recovery. But more bad news came our way, just as we were all packed and ready to go- they decided I needed more antibiotics through IV and that meant we had to stay in Brussels for 2 more weeks, making twice a day trips to the hospital for the infusion.

The next 2 weeks we stayed at a little rented apartment and every day was ‘groundhog day’- trips back and forth to the hospital, day time sleeps, day in and day out.

It was a difficult 2 weeks because I only had one ‘good’ arm that they could use for the IV and it became bruised and hurt. I was dreading each trip to the hospital but I used the time on the ‘chemo chair’ for meditation.

More than 5 weeks have gone past since we arrived in Brussels and finally we were on our long way back to Melbourne.

Back home, I was hospitalised again and then to our big relief I was given the green light to go home and start intensive rehab for my left arm and neck.

Home sweet home but It took some adjustments to settle back in. With the never ending help of Dave as well as friends and family, life started to resemble some normality again!

Monday, 6 February 2012

Almost One Year Anniversary!

It was February 22nd last year, a Tuesday. A day that started out as ‘just another day’ and ended up unlike any other day.

Two days earlier, Dave (my partner) and I went to visit his cousin in hospital, after she had spinal surgery. I was having neck and arm pain at that time and when I told her about it she said to me, almost begging: ‘Go and have an MRI Lee, please, even if you have to pay for it privately, just do it’. I didn’t know back then how difficult it was to get an MRI through a GP, how long you normally have to wait, unless you’re hospitalised. In fact, it didn’t even occur to me to have an MRI but that night I was in a lot of pain and I decided to take her advice on board.

A couple of weeks prior, I saw my GP and told him about my recent neck and left arm pain. He sent me to have an Ultrasound, which showed an inflammation in the left tendon. I was given a cortisone injection and some anti inflammatory tablets but even when the inflammation was reduced, I still had this nagging pain. More than that, I had this nagging feeling that something was wrong, a feeling I couldn’t ignore.

So there I was on that Tuesday, having my first (of many) MRI. A few hours and $300 later, I was given the report and was on my way home. Sitting on the tram on the way back, I took out the MRI report and tried to figure it out. It was full of medical and technical terms that I had no idea what they meant but 2 words stood out: Lesion and Astrocytoma. What the?!

As soon as I got home, I jumped on Google and looked up Astrocytoma. Now, just a quick word on the internet- Thank god for it, the amount of information that is available and so accessible to us is a blessing a lot of the time. But in a situation like this, it can also be a curse.
Everything that came up was about brain tumours, cancer and survival rates. I tried to composure myself and remain calm, but then I got the phone call from my GP -the phone call that you never want to get! He was already notified by the MRI clinic about the findings.  He said I have a lesion inside my spinal cord and wanted to see me the next morning to discuss a course of action. And that was when it really hit home- There was something wrong with me and it had a very scary name- an Astrocytoma. Panicking, I rang Dave who was working away from Melbourne that week. We were both in shock.

That first night was a long sleepless night.  There was this sense of urgency to write and write and write... the words that define me, the words that are close to my heart and the words that will speak to my loved ones when I am no longer here on this earth. I also felt a sense of a `mission` and purpose .A sense that NOW was the time to put words into actions, to let the spiritual insights I have encountered over the years manifest in a practical way. I wanted to be able to look fear/death in the eye and know that death in nothing to be afraid of.

The next week was a blur of medical appointments and consultation, during which we learned about the severity of this type of tumour in its location in the spinal cord. We were given the scary news about a very high risk surgery and a more high risk chance of paralysis without surgery. After one very gloomy consultation with a Neurosurgeon, we needed a reminder about a more spiritual aspect of our being, something not related to medical or scientific outlook on how the body works. So we headed to our favourite book shop and Dave randomly picked 3 books from the ‘self help’ section. Turned out 2 of these books were written by a man called Ian Gawler, who back in the 70’s was diagnosed with an incurable bone cancer, yet managed to heal himself using meditation, nutrition and a life style based approach. That night, I read his book ‘You Can Conquer Cancer’ and everything about it resonated with me –I totally agreed to his holistic integrative approach to dealing with an illness, meditation as a crucial tool in recovery, a vegan plant based diet, reducing stress in life and generally enabling the body to use its innate healing capacity to the maximum.
That night was another powerful night full of tears, fears and love. I felt this amazing connectedness to Dave. I knew he was with me the whole way through and there was a real sense of oneness in this new and difficult challenge life had ‘thrown’ at us.

The next morning I rang the Gawler Foundation and found out they run a 10 day residential retreat for people newly diagnosed with cancer and that one of these retreat had started the previous day. I really wanted to go! They were reluctant because I missed the first day and had no preparation for the retreat but after explaining my situation and my background, they agreed!
2 hours later we were at the retreat in Yarra Junction. Saying goodbye to Dave at this highly sensitive time was difficult but we both knew that this was where I needed to be and that I was in good hands.
And indeed I was! Every day was jam packed with learning this holistic approach.
 We learned about food and nutrition, the importance of juicing, mindfulness meditation, forgiveness, dealing with loss and grief and much more. It was such a safe and supportive environment to deal with this life changing situation and it was very comforting to be with people in the same boat. I shared a room with an amazing bunch of women and lifelong friendships were formed.

One thing that really stood out for me during that time after I was diagnosed was how grateful you become for every little thing in life. Almost in a surreal way. I remember walking in the forest at the retreat and really paying attention to every tree, every smell and every creature along the way. Truly stopping to smell the roses! Confronting your own mortality is a very powerful time and allowing yourself to face and accept the possibility of dying- makes you committed to life. At least in my experience.

Following the retreat, I went and had surgery in Brussels, from all places, and on that in my next post... :-)