May 16, 2016

Barbara’s survival story – 8 years on

IMG_0237My journey with cancer started in November 2008.  While visiting my daughter in Perth, I started coughing. Whenever I talked I coughed. I got back to Canberra and thought this is ridiculous, so I went to the doctor and he sent me for an X-ray. Looking back I can recognise the signs that had already started, like feeling tired, puffing and huffing when I would climb the steep driveway and stairs to the front door of my friend across the road. At that time I used to say to myself “I must start walking again, I’m out of condition”.

When I went back for the results the doctor said “you’ve got cancer”. I was sitting there and had to do a double take. He didn’t talk. He just got on the phone straight away and started to get things sorted. It felt good to know that something was being done straight away. He said he was sorry and made an appointment for me to see the lung specialist.

I felt bewildered. I got into the car and thought why me? Then I thought – why not, it happens to other people.

I saw the lung specialist, had a CT scan and he said I needed a biopsy and sent me to the oncologist.

My younger son and my sister (who had only a few years prior had her own cancer scare) came with me. I learned from my daughter-in-law how important it is to take someone with you and any questions you might have to the appointments, not only for support, but as an extra pair of ears. Whatever I missed or would forget – they’d remember.

I had a full body PET scan. Back then, Canberra didn’t have this machine so I had to go to Liverpool.
I went with my son and we drove in silence. We didn’t know what to say to each other. We were both in our own thoughts not knowing what to think.  I do remember making a few light jokes like I was going to glow from the radiation – that helped make it a bit lighter. I was diagnosed with a Non-Small lung Cancer of the right lung.

During this time my daughter-in-law was studying her doctorate thesis related to ‘Patient and partner adjustment to cancer’ which helped us as a family tremendously in many ways.  It was comforting to have her on my journey.  She explained things beautifully, and was my biggest support.  She was able to provide me with lots of relevant pamphlets, cds and information.

I had all of the treatments explained to me by an oncologist nurse.  I called them all angels. When I sat in that chair for my first chemotherapy treatment I had forgotten all the information, it was quite daunting – especially not knowing what lay ahead. I had my faith and hope in God. Today it is deeper than ever.

From then on I went in for my jabs [chemotherapy] and had a very special friend who would take me to all my appointments and be there for me without asking, he was always there. So, I went through my chemotherapy and radiation and at the end of March I had a CT scan and it seemed all ok. I’ve always wanted to do a European River Cruise, the doctor said why not, so that’s exactly what we did.

In January 2010, I started coughing again. The CT scan showed the cancer was still there or had come back. I was told by the oncologist that things weren’t going well and that I would be lucky to make it to Christmas.  My oncologist said I should do all those things I wanted to do.

So, I decided to redo my kitchen, relay the carpets and build myself a new deck. It all sounds radical, but I was assured that it was ALL quite normal. Phew! And I thought I had lost ALL my marbles.

In August 2010, I called the Cancer Council for help and support. I was offered one on one counselling sessions and a lung cancer telephone support group.  We felt like a family, sharing and supporting each other through thick and thin.

In that time my special friend bought a caravan and we decided we would go caravanning between the scans. When everything was ok, we’d head off again.

In 2011, my CT scan showed I had pleurisy.  I had a pleurisies procedure.  During that time, my father had a stroke, so while in hospital I would visit him. Sadly he passed away soon after, which was a difficult time.

During the journey I was very active exercising, lots of walking, riding a bike and searching for ways to keep well. I kept positive and determined for myself and others.

In 2012 we went on a Mediterranean cruise and towards the end I have spent almost 3 months with my daughter in Perth.

Everything was going ok. Then, in March 2013 I started having chest pains. I thought I had just been overdoing it, but it wasn’t going away and was getting stronger. My son took me to hospital. They did a blood test and X-rays and found I had blood clots on my good lung.

I had another biopsy done and had to wait for three weeks for the results to be eligible for a new trail drug from Germany.

I thought I was going to die, so I started de-cluttering so my kids wouldn’t have to deal with the unrest I had to when my Dad passed away.

I was accepted for the trail drug and started medication.  I felt better overnight and didn’t have to use the oxygen as much. I had a lot of apprehension about my first CT scan after this new medication. It was quite good – there had been a bit of a change. Although in August, I had another CT scan and the medication had stopped working. I was told that after this medication, there was nothing else I could be offered.

My oncologist decided to try the chemo treatment I had previously, and after 3 months there was a great improvement.

However, the journey of knowing that my body is not what it was, my skin was not what it was and my hair was not what it was and my thinking is quite different is very challenging. I remember thinking what now! What do I do now?! No more appointments and tests and dates to keep track of, I knew how to do that, but, what now?

With the help of my support group and facilitators with Cancer Council and Lung Foundation Australia, the journey forward is rewarding. I go to the movies, on short drives and train journeys.
I even did a short road trip in a hired motor home that I drove myself accompanied by friends.

Without my faith and help from my family, friends, Cancer Council and the Lung Foundation, I just can’t imagine what it would have been like.

I still have the 3 monthly CT scans. I still attend my telephone support group facilitated by the Lung Foundation.   We support each other and at the same time have fun. There are lots of things I am unable to do, I had to come to terms with that, but I don’t give up. I always find a solution.

I believe that God has healed me, I wake up every morning to live.

I would like to thank everyone that was part of my journey.

Barbara (Basia) shares her story with Cancer Council ACT as part of their 40th anniversary and Lung Foundation Australia’s patient care website Lung Cancer Network Australia – May 2016.

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