DIAGNOSIS OF SECONDARIES 2002

ABOUT ME I am a secondary English teacher. Predominantly a home maker while Ben and Kate were pre-school – always a community volunteer, (kindergarten, preschool, primary and secondary school committees) – some casual work tutoring, supply teaching.

Returned to full-time teaching 1991 – after cancer diagnosed in next 7 years took a total of 2 years sick leave while attempting to return to full-time work ( only part-time work offered was in a rehabilitation year) before finally resigning in 1999.

1999 2001 home maker and community volunteer.

2002 – began casual work as a teacher of English as a second language.

Plan to return to supply work with a view to finding permanent part-time work as an english teacher – also working as a volunteer in Australian Red Cross office to learn office skills.

STATE OF HEALTH – tiredness debilitating at times – pacing myself as a new skill being learnt! – learning to ask family and friends for support and assistance without feeling guilty.

UPDATE TO STORY/p>

2002 – advance in breast cancer was small lesion in right lung – this was eventually controlled by Femara – despite this Pete, Kate and I travelled to USA where our son, Ben, was on Rotary Youth Exchange in Eagle Pass, Texas

2005 – lost 12 kilos and had a troublesome cough before a lesion in my chest and extensive bone metastases were found – treated by chemotherapy (CMF again), a daily dose of Aromasin and monthly infusions of Zometa

2006 – travelled to Canada where our daughter, Kate, was on a study exchange from University of Qld – just prior to Christmas flew to Brisbane for extensive radiation for pain relief

- cancer progressed to liver but chemotherapy only started in October (AC) – finished March 2009 – scans pending

2009 – fortunate to be only suffering discomfort and some limitation and slowing of movement from bone metastases

- living with realistic positivity

- casual work on hold for the moment

- husband and I are “empty nesters” now, and are doing as he says “the best we can”, which includes often taking advantage of cheap airfares to escape for “adventures”!

DIAGNOSIS OF SECONDARIES Near the end of my radiation treatment in October 2007, I began to feel pain in my right hip area and a subsequent scan showed I had a 4cm tumour growing on my right iliac crest. Previous scans in June and August 2007 had come back clear so it was a surprise to all off us especially the doctors that I could develop such a large tumour so quickly and that it hadn’t been picked up in earlier scans. Anyway I had 5 shots of radiation to the area and all was well. I started my taxol and herceptin treatment near the end of November 2007 and come January 2008 I started to have a lot of pain in my spine and pelvic region. I had a bone scan in January 2008 and it showed that I had developed several new metastases throughout my pelvic and spine region. My oncologist said that there was no way this could be cancer because according to him cancer doesn’t grow that fast so I went to another diagnostic imaging place and had a CT scan done on to check the earlier bone scan. The CT scan showed I had nearly 17 new growths throughout my pelvic and spine region. My oncologist then decided to stop my herceptin and taxol treatment saying that this was usual practice when someone had a progression and there was another drug available to try. At that stage I had had 3 doses of herceptin and 10 of taxol.

One of the breastcare nurses referred me to an oncologist who told me about the benefits of a new drug called Tykerb but said I would need to pay for it and that it cost $4000 per month but that I needed to pay for 4 months of it upfront before they would agree to give it to me, meaning I needed $16,000 to start treatment. I told her I needed to think about it and she told me not to take too long because she said the way my cancer was progressing I would be lucky to have more then a few months left. So I ended up going to a pharmacy a week later with $16,000 in cash [half of which a cousin who had just come into a huge inheritance had given me]. I felt like I was doing an illicit drug deal. Anyway when I went to give the pharmacist the money she told me the company Glaxo Smith Kline [GSK] had decided to give me the medication for nothing, I couldn’t believe it and burst into tears. So I never actually paid for this drug because until it was made freely available on the PBS in May 2008, GSK provided it to me free of charge.

After taking the Tykerb [which is 5 big tablets per day] for 2 months, I had an MRI in March 2008 and it came back clear apart from one lesion on my 4th lumbar disc and another on my left iliac crest. The rest had completely gone. Since then a new growth on my left iliac crest discovered in October was radiated in December and another new growth discovered in the ASIS [where the thigh bone fits into the hip socket] is to be radiated in May. Hopefully that will be the end of it for awhile.

ABOUT ME: Well thats my cancer story. As for me I am a New Zealander who has lived off and on in Australia for a total of 15 years now. I returned in May 2003 to Sydney, where I have spent most of that 15 years. I am single and have no children and have four brothers and one sister. I moved to Melbourne to live in March 2008 as at the time I did not think I had long to live and wanted to be close to my sister and her family in Mornington. I recently moved to Cairns as Melbourne was just too cold for me. I have a brother and sister in law here in Cairns and am really loving the consistently warm days.

In March 2008 I went on a 2 month holiday around Europe. I received an early pay out of my superannuation and returned to Europe for another 3 months. I also went to Egypt and Israel during that holiday. I had a great time overseas but the second holiday took alot out of me and energy wise it took me sometime to regain my health after I returned. However the trip was well worth it. I quite often sit back now and think of all the places I saw last year and all the good times I had. I also have alot of great stories to tell people about the trips and have really enjoyed sharing this experience with various family members and friends and acquaintances.

I had CFC and andermyocyne {or something like that} and then a mastectomy on 18/3/03. The surgery was the very lowest point and I cannot describe the joy I would have felt if just one single soul who had been down that path had come to the hospital. I had my phone in so that helped. I then was given a course of Taxol which made my foot go flappy and I was back in hospital while ‘A Current Affair’ got hold of the story and through the group I was interviewed. My radiotherapist has said he wanted me to have radiotherapy on my breast area in order to stop the cancer coming back. I was on the waiting list but it was 12 weeks, so I wrote to the minister. Apparently this is a really good thing to do and they stir up all those people in the department you need help with. The Minister looked at my case and then asked my Radiologist to ring me and tell me that I was terminal. He was pretty embarrassed because we both knew this. This was treatment that would hopefully make it all less rotten later on. My Dr kept saying ‘you do know you are terminal’ and I kept saying ‘yes but this will help won’t it?’

Bad bad thing.

I went to Townsville the week after I wrote to the Minister and was on the telly. Some poor people who could/would not write may have died shortly after in their beds. I never wished to shove myself up the list. I only wanted to help those in need of radiotherapy and I was very aware that the treatment for me was not a life saving one. At this point the fact that I was metastatic and unsaveable was shoved down my throat.

I had 4 weeks in Townsville for the 2nd radio on my chest area but apart from that I have had no time off work since the first episode. I get tired a bit but have been able to cut my morph to between ½ and nothing in the last year. I was given 2 years so the clock ticked to Nov 2004. I still work full time and average 48 hours per week. I have been overseas and that was a breeze for me and Bob and I also make a point of travelling a bit with work.

If my story is being read by any newly diagnosed people then I would shout scream and shake you all into looking at the big picture. This is not the end, it is just the next bit.

ABOUT ME I do feel that the more power I give this thing the stronger it will grow. I want this story to be about me and not my cancer. I have 6 children, 5 girls and a boy, and no grandchildren yet despite my none too subtle hints in that direction.

My husband Bob and I run a business selling equipment to the local mining and sugar industries. I enjoy any form of craft, sewing, painting, writing, in fact anything where you have something at the end for all your work. I also love antique furniture and have restored some great pieces.

Until my job swallowed up my days I was active in the community and as my last child has left home I hope to get back into this. My wonderful family have been so supportive, and my husband is a gem.

Update July 2007

Best news is that I am still here and we got 2 grandsons 2 years ago. Very blessed as one was an IVF baby. Then in the last 3 months we have got another 2 grandsons and heard that yet another IVF blessing is due here in December.

At the start of this journey I vowed I would never change anything because I had breast cancer.

We had our business so I worked and worked and worked. Woke up one morning with two grandsons and wanting to spend time with them. I had a total life changing moment when I realised that my promise to not let the breast cancer change my life had backfired. I needed to think about my life if I had not gotten breast cancer. We would have moved on. Our business was worth money and we would have sold it. We would have enjoyed our time more. We did all that.

We holiday and we spend time with the kids and where ever we want. We might be spending their inheritance but they are all big and ugly enough to make their own lives.

he only thing of my former life I have clung to is an interest for my husband.

I know I will not be there for him in his later years so I have encouraged him to establish another business. One that requires him to be there when he can and absent when he cannot.

All done and dusted. I know I am so lucky to be able to lead this life.