Name – Janelle
Date of Birth – 19/10/1984
Journey – My first diagnosis of Breast Cancer was 1st May 08. Surgery in June, and a scan discovering mets in liver and bones in July (post op). Chemo began 1st Aug after a short radiation of pelvis to prevent any pain, although I had none.
Brain Met removal 2009 on the exact date (1 year anniversary) of the original Mastectomy (11/6/09). I am about to have a third brain met removal in the same place and also have spread to lung which has no current effects. I am HR2+ only and about to turn 26. Don’t assume or blame BRCA genes – none here!!
I was diagnosed when I was 23, when I was about to move up in my dream (enjoyable) career. Devastated once secondary cancer was diagnosed, as had been happy/hoping to remove the breast, have chemo and get back to work/life 6 months later. Once secondaries appeared in the July scan the devastation was mainly about my career, independence and moving back to my country town from south east Queensland for the purpose of “you know what this means, spend time with family”. I soon became very happy and understood the whole life (regardless of health and bad luck) goodness to be near my immediate family.
I handled losing my hair but missed my cleavage and gave away my now un-wearable ‘nice’ clothes – telling myself less/covering (cleavage) is more sexy and more classy …but living in a hot town it was/can be hard not to miss light singlets and not have to worry about bending forward. Wigs were also too hot – though have began for 1st time this winter to move from the patient look and hide. The little things.
Regarding sex and romances:
I was amused (probably nervousness) when thinking about and imagining dating someone, when you have to explain you are missing a breast. When do you do this? How do you say this? I became happy when I thought early on, before I knew I had secondaries, but have one breast, that my next lover would have to be a true lover. One who values my soul/ myself over a female physical body (superficial taking into account attraction factor still) and who would love me for who I truly was. Who is not obsessed with body and looks when partnering. We deserve this and to me I had to make myself feel better about mastectomy – being a tool to find TRUE love/soulmate.
Once I knew I had secondary cancer I instantly chose to be “off the market” – not wanting to break a heart with the “medical” fate of death – personal choice. Personally, I would prefer their happiness and that they fell in love with someone for life. Yes I know about car crashes…but I did laugh instead of cry (off market anyway) about the goodness of not wasting my time on potential lovers, ‘body, body, looks’ men.
It took me well over a year to get over my career dream and get used to not working. This happened after I had to permanently stop a short government contract due to the 1st brain progression in May 09 – thus making me unreliable for Employers. Also interesting is the fact of others of my generation’s (Y) lives were starting (not yet married with babies) so when I was at home everyone was/is at work. Now I stick it in their faces (as a joke) that they are still at work whilst complaining to me about their day. Quality over quantity – being a 25 year old retiree!! Now very much enjoy and value life – apart from needles of course.
I did have a sneaky mets at least a year and half after diagnosis where I was comfortable as I didn’t feel sick or in pain. I now do have good pain management but am comfortable which is great. I have my independence back (thanks mum), have gone travelling and am enjoying being a retiree in clubs, house/garden beautifying, peacefulness and my childhood loves of different creativities – which yes cost money and is why I haven’t done a lot of.. but that can make you more creative. Now comfortable not working and happily independent from family financially (thanks to great previous employers Custom Super Fund) however I certainly understand and went through financial stress and breaking living.
I cry whenever I want to too.
In Dec 2009 I attended a Gawler Foundation www.gawler.org 10 day stay which I very much enjoyed and found helpful, psychologically more than physically for myself. I have learnt how to demand and stick up for myself in hospitals when required – although very thankful to the team looking after me. However when first diagnosed I did experience timing problems of “a few weeks won’t make a difference” and could tell other stories…
Advanced Health Directive
For a downloadable copy of an Advanced Health Directive, and other useful information about advanced care planning in Queensland, go to this website.