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Jane’s Story

29 Jul 2015 by Krystal Barter
Jane’s Story

My name is Jane and this is my story.

My journey started 44 years ago at when I was 4 years old, when my mother died of breast cancer, she was only 35. In those days it wasn’t something that was spoken of and it has only been recently that I have heard the full story and of the battle she fought and lost. I knew for a long time that she had died of cancer, but now what type – so much so that when I had my tonsils out when I was 6, they insisted that a mole on the bottom on my left foot was removed, just in case.

When I was 21 and thinking about getting married, I found out that it was breast cancer and that it had mastiscised and had spread. I didn’t really think that much about it until 1990, when I returned from living in the UK, and my new doctor took my down my history and sent me for a mammogram straight away, as she considered me to be a high risk. So each year (well most years, sometimes it all got too much for me – and there were a few gaps) I would turn up for a mammogram, have it and wait for the outcome – find all was okay and put it to the back of mind and go back to my normal day to day life. In 2004 things changed to some extent, they found a change and I was sent to a breast surgeon and had a lumpectomy – lucky for me all was okay – but more vigilant screening was recommended. The next few years passed and I continued to be screened, in 2008 we moved house and I had plans to travel the world and catch up with some old friends and spend time with my son, who was going to the UK to spend time with his dad. So we moved house, but I didn’t book anything and thought I would wait until I had the yearly mammogram and ultra sounds. November was a good month – I had some great times – we had just moved in our brand new house, we went to Canberra – and the day of one of my tests – I went to see Andre Rieu. So life was good and was going to get better, or so I thought.

One month after my yearly exam, after being told, just ring up and get your results – I had a phone call, can you come in and see us – of course I said yes and my lovely son came with me. I felt very calm when I was told that I had DCIS and all was explained, what it was and what would happen. It wasn’t urgent but they would like to do the mastectomy in the next six months – but sooner the better – not before Christmas – but probably not until February – as all the plastic surgeons would be on holidays. Did I want time to think about it? Okay I said – just book me in and I will do what I have to do.

On 9th February I was admitted to hospital – it was 2 days after the fateful Black Saturday – the weather was hot and all around us was smoke and very sad stories about those who had lost their lives and their homes to some of the worst fires Victoria had ever seen. It made me going into hospital seems very trivial in away and almost feeling guilty that there was nothing I could do to help. I was feeling strong and up beet, my family were there for me, my friends had rallied around and people were saying prayers for me – I felt loved and supported.

During this time, my breast surgeon felt that with my family history, it could be helpful if we received genetic counselling. So in May I filled out my medical history and the family history and attended a genetic counselling session at Peter MacCallum with my sister and daughter in July this year. It was helpful to a certain degree, but since they felt that although the family were a high risk, particularly my sister and daughter, the type of DCIS I had was only a low to medium grade that the links between it being caused by genetics was not very likely. We were offered genetic testing, but it was at our own cost. So at the moment I have put this on hold as I complete the reconstruction phase, and when funds will allow it we will look at possibly having this done.

In the meantime, I felt the need to check on a couple of other things that had been bothering me and after a visit to my doctor – he suggested that a trip to my gynecologist would be in order, so the outcome of that was a hysterectomy would be required. I also have too many moles according to my dermatologist (I have a raft of specialists – too many I think), so he suggested that I went and had photos of my body – so that when I have a yearly check they can make sure that nothing has changed. It is funny when I look back – it was after the mastectomy – but before the second one, and I do look very strange and lopsided.

After much thought and deliberation, I spoke to my two surgeons and asked about having my left breast removed as a preventative measure. This was felt to be the right idea, and it could be done when I felt ready for it. I decided better now to get it all over and done with. A decision which at the outset felt easy – but over time became difficult emotionally – but not when I thought about it logically. In June I had the left breast removed, so they now look the same. In my heart of hearts I know that I have done the right thing – but when I look at myself – I look like someone else – something I am still coming to terms with. In December, I had the second part of the reconstruction process and had the tissue expanders replaced by silicone implants and new nipples. Although I am still getting used to them 8 months on, my surgeon did a fantastic job and no one can tell the difference.

Over the past years I have done my best to raise funds for breast cancer, through buying merchandise, selling items through my Avon business, holding Pink Ribbon breakfasts and the last two years, taking part in the Mother’s Day Walk. I have even decided to step outside my comfort zone and agree to take part in a Calendar shoot – in my underwear – that is raising funds for breast cancer. The most challenging part of this was that I ended up on A Current Affair – in my underwear – and this was only three days after I got after hospital from the second mastectomy. Life is full of challenges and I intend to take up as many as possible – such as getting more involved in the NBFC – on the ground and as an Ambassador for such a wonderful and important cause.

It has and is a challenging year for me and my immediate family. It has given me time to think and reflect on my past and a chance to get help to deal with the cancer and other life issues that have been under the surface as I have speed through life – just trying to get by. I am still on that journey and will be for some time.

Going forward to the future, I now doing a nursing degree at Deakin University, so that I can do something that will allow me to give back to the community, to do be able to care for others, to use my skills and ultimately be able to help other women and men when faced with the news that they have breast cancer and hopefully be able to help them on their journey.

Life is still full of challenges each day; during my last trimester break I fractured my shoulder and the top of my humerus. I then found out I have osteoporosis and need to make sure that I keep an eye on this. The fracture is also taking a lot longer to heal, but just another challenge and at least I am still able to go to university – thanks to the help of family and friends, because yet once again I am not driving.

Jumping forward 5 years – 2015 Update

Jane and Julie

Well life has moved forward despite various challenges.  Due to overwhelming challenges with my shoulder, that resulted in a total shoulder replacement, ideas of becoming a nurse had to be shelved.  I spent another year studying towards a Health Science Degree and then tried a Master of Public Health.  My life was getting to busy, with my involvement in Pink Hope increasing, trying to study became too much.

The last few years I have been spending lots of time in Sydney, having the privilege of working in the Pink Hope office, getting involved in the day to day running, special occasions and events.  I have had great fun running events in Melbourne, with two very special ones being a cocktail party in 2013 and a High Tea in 2015 in memory of mum (50th Anniversary).

My lovely son and daughter have also become involved in Pink Hope, helping and supporting me at every function. My daughter has also started her own journey of screening, having undergone a base MRI and ultra sound, which she will continue to do every 12 months.

I thank my lucky stars that I found Pink Hope, with them I have found a community that understands what it is like to live with the threat of breast or ovarian cancer hanging over your family.  The love and support, together with the education Pink Hope provides, gives us all a chance to make decisions that ultimately could save our lives.

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