What were you diagnosed with?
Non-Hodgkin’s Lymphoma in 2011.
How did you first become aware of your cancer?
I had pain on my left side underneath my rib cage. The only time I felt it was when I sneezed once and I felt the sharp pain. I didn’t know what that was and I forgot about it.
A week later the pain got a lot more severe. But I delayed going to the doctor because it was going to be a little embarrassing telling the doctor that I felt the pain from sneezing. When I started taking eight neurophen a day for the pain I decided embarrassing or not, I had to go see the GP. He sent me for a few tests and everything was normal. But my gut feeling made me request a full medical examination – a full blood test to make sure I was ok.
About 6-8 weeks after the initial pain my doctor calls me in with the blood test results. He says everything is alright except for one blood test. He told me not to be too concerned, but just to make sure, he had me repeat the test. I got the same result. At that point he had no idea what to do with me so he referred me to see a gastroenterologist. The gastroenterologist sent me to do the same blood test again and also a CT scan.
How did you feel when you first received the news?
When I received the news from the gastroenterologist that I had cancerous tumours in my spleen I was shocked. I told him ‘it can’t be, I’m fit and I look after myself’. I also asked him if they were sure they hadn’t mixed up my results with someone else. He assured me they hadn’t.
When I asked him if I was going to die, he wasn’t so reassuring when he answered ‘probably not’. What was worse was that although it was cancer he still couldn’t diagnose me as only a haematologist could do so. When I finally consulted with the haematologist he said it could be Lymphoma and it can also be glandular fever so I had that tested but it was not to be. After having 5 other tests, which all proved to be negative, I was asked to do a PET scan which would confirm the cancer diagnosis.
The haematologist called and said ‘Meiron you have Lymphoma’.
Tell me about the surgery
As it happens the cancer had spread across my abdomen but no one was aware of this until I was having surgery.
The surgeon performed the biggest cancer operation he had ever done and at the same time he saved my life. He removed my spleen, half of my pancreas section and my stomach and a portion of my diaphragm.
I was at the Prince of Wales for about two and a half weeks.
The hardest thing was finding out my staging of cancer after the surgery. If you are stage 1, 2, 3 your chances are good. As soon as you hit stage 4 & 5 the chances of survival are remote.
As it turns out my cancer was abnormally grown and so they didn’t know how to stage it. It took them 5 days to confirm a result and the waiting game was rough. Thankfully it was stage 3 in the end.
Tell me about your treatment process
Every three weeks for six months I had the heaviest doses of chemotherapy, which really knocked me around. Six months felt like six years; it was really a slow, long and very tough time in my life. And because of how strong the dose of chemo was, my hair started falling out. So I went to my hairdresser and had him shave it all off.
I would go to the hospital and I would sit in a room that felt cold and depressing. Patients are fighting for their life. The nurses were very sweet and tried to make the experience of being hooked up to a drip as pleasant as possible.
The first treatment took six hours. I felt really knocked around and wiped out especially as I had a reaction to it and felt very nauseous. The second time they were trying to find my veins, which was horrible.
Generally 10 days from treatment I would start to feel a little stronger. In the last week before my next treatment, I was more mobile; I would even go for a short 15 minute walk but in return it would take me four hours to recover from it.
What did friends or family members do or say that meant the most to you?
My family came from South Africa when I was in hospital and they stayed for my first treatment which I was so grateful for especially that it was my longest treatment and very daunting. They flew back for my fourth treatment and stayed for about 10 days.
Throughout the treatment period my friends became my family. I had one particular friend who was amazing. She moved into my home and because I had no strength and couldn’t fend for myself, I needed someone to help me. I was very grateful that she was so supportive.
I also had a lot of friends visiting, bringing food and offering their support, which was graciously appreciated.
Where did you find strength to get through the treatments?
In 2009 I wrote and published my first book two years prior to getting sick. It was entitled ‘D-Stress. Building Resilience in Challenging Times’. It was like my own book prepared me for what was to come. I was wondering if I could put the techniques into practice at such a testing time. I’m thrilled to say that it was those techniques that got me through.
Also, I was very fortunate to have friends around who cared and sat with me. To fill the time I would ask them to tell me a joke and talk about their lives.
And then I decided to blog during the third week after chemo about what I was going through: I named the blog ‘Sharing the Cancer Journey’ – I wanted to catch the rawness of what I was going through at the time I was going through it. Only my inner circle of friends and family knew about it. It’s still live and can be found at https://sharingthecancerjourney.wordpress.com/
Were there any programs or services offered to you that would help with the treatment process?
I didn’t feel I needed it. I guess if I really wanted it, I would have enquired. But nothing was really offered to me because they could see that I was ok.
Did you face any obstacles during your treatment process?
There were complications in the middle of my third treatment.
As I had lost a lot of body parts fluid was building up in my abdomen. It was during a time when I was alone at home I had felt a sharp pain on my left side. So I took two Endone tablets (strong pain killers) but they didn’t touch sides. I waited two hours and took another three, which was way over the prescribed amount. But the pain was excruciating and nothing was helping to ease the pain.
At 3am I packed a little bag and called a taxi to take me to Prince of Wales Hospital emergency. I was back in hospital for five days. Fluid had built up in my abdomen so they had to put a drain in with a bag. The doctor told me ‘if it gets to a certain level, I’m operating, because it means your body is not excreting. If it gets to 300mls you are going in for surgery in the morning’.
I was fixated on watching the bag and noticed the levels slowly increasing. I couldn’t fall asleep knowing what the consequence could be. When it got to 200mls it stopped. Thankfully there was no operation.
What was something that helped you get through Chemotherapy?
Throughout the whole experience I said to my family and friends – ‘we are not calling this chemo treatment’. I’m going to my ‘healing’ treatment; I reframed it. If I was to survive this would be the key and that was the way I saw it all the way through even though it was knocking me around a lot.
Finishing Chemo…
I finished chemotherapy (Healing treatment) around Christmas time 2011 and had to wait six weeks for my results. I started to regain my strength back and I was relieved to not have to go back for chemo again.
The end of January was approaching and my hair started to grow back a bit. I wanted to celebrate my recovery before I had the results because that is just me. So I rang up some good mates and told them I wanted to go to South Australia to a wine region even though I couldn’t drink much wine. We went for five days; it was magic. We had a fantastic time. We also celebrated my birthday that weekend.
I came back that weekend and got my results which were all good. I was told I had five years remission but needed to get tested every three months for two years to make sure the cancer didn’t recur.
Has this experience changed your life in any way?
Yes it has, in countless ways; the appreciation for life; for having energy. The people that I have in my life and the fact I have the energy to run with no pain now – I would not take that for granted again.
A gift for energy. I have such an appreciation for energy that previously I took for granted. Just being able to have the strength to do everyday activities is something I treasure.
My work has changed too. I became very involved with Lymphoma Australia, and I’m on the Partnership Council of the Chris O’Brien Lifehouse Hospital.
I speak on resilience and use my story as an example in hope that people will find a way to strengthen themselves to their challenges. Unfortunately, we aren’t taught these skills in the school system and then mature only to find how challenging it is to navigate our stressors without the required skills.
Professionally I speak at conferences on stress and resilience and conduct workshops on how to manage workplace stress. In addition, I’m involved in corporate advisory for organisations Australia wide.
How do you feel about talking about your experience?
Emotionally, it’s a very deep seated wound especially as I was fighting for my life. Sometimes it does touch a nerve but most of the time I feel grateful and appreciative.
I talk about my experience – not to make it about me but to help others to find courage and empowerment when facing their own challenges.
What advice would you share with someone who has just been diagnosed with cancer?
I would say most of the battle is the battle with yourself; the battle in your head.
One of the most powerful techniques I used was the ‘present moment technique’. It was described in Eckhart Tolle’s book “The Power of Now” and based upon the premise that when you focus your mind on the present moment you have no anxiety, fear or stress.
It’s very easy for the mind to be future focused and worry about ‘what if’ scenarios (will my treatments cure me etc.) or being anxious about going for the next treatment. So I just focused my mind on what I was doing at the time and when it wondered to the future, I directed it back to the present moment.
It was a great stress reliever to not buy in to a negative story made up by my mind.
Throughout the cancer journey we’re not in control of how things will pan out and the only thing that we can control are our thoughts. If we decide to make our mind our best friend and choose to think positively then we don’t allow our circumstances to dictate our emotional state.
Advice for carers
Ask the patient what they need from you instead of assuming what they need from you.
Be open-hearted by holding the space if the patient wants to talk. Your presence of just being there and the patient knowing you are there to support them is enough. Be gentle even if the patient snaps; they don’t mean to do that.
Advice for patients
Often patients want to protect the carer who will often have doubts whether they are doing everything right for you. Just tell them what you need and eliminate the stress the carer may feel.
Do you have any final advice?
Don’t take your health for granted. Respect your body and nurture it.
Appreciate that you have energy and that allows you to do the things you want to do. Without it you have little quality of life.
Life can change in a moment, so do what you love and the things that make you happy.
Don’t sweat the small stuff – at the end of it all we land up in a box!
Surround yourself with people that care for you and support you and shy away from negativity. Life is too short to have that around!
Wake up in the morning with a sense of gratitude for what you have and feel lucky. Things can always be worse.
Want to know more about Meiron?
Visit his website http://www.meironlees.com.au/