Be careful what you ask for

I was at an event and I was talking about my cancer journey and what it is like, now when I do these I tend to joke a bit and encourage people to ask questions as I go along and not wait until the end. This particular day I was talking to a group of teenagers. I was talking that women’s cancer is important and to do what you can to minimise having a cancer and that a brain tumour is a women’ s cancer, especially as the numbers of women with brain tumours is increasing.

I spoke about the changes that happened, especially when I was first diagnosed and I was put on high doses or steroids. I said I used to joke that I was on the same drugs as Lance Armstrong (turns out I just about was). I spoke about the effect this had on my body, how I just bulked up and doubled my weight, telling them that not all cancer medications make people emaciated. I spoke about the swelling in my brain and how this affected me.

Then the questions, first one and then the flood gates opened. The first question was quite tame, “Did the course of steroids, cause you to grow lots of  hair?”. Yes it did, I started to get a mustache and side burns, and for the first time in my life I had to wax my face, while at the same time this hair is growing the hair on my head was thinning and falling out. Next we had “Did your periods stop and what happened with that?”  Yes it affected my periods I suddenly stopped having them and over the years I don’t know if I went through menopause as the drugs gave me hot and cold flushes but it meant one less expense. The came the whammy, “Did you have sex and if you did what happened to your head?”. Well this made me laugh, I said that I was in a relationship at the time I was diagnosed and the gentleman in question, thought we should marry. I thought me having a brain tumour really is not a good reason to marry and broke it off. I then went on to tell them that when the swelling was happening I had to be careful not to get too stressed as I blacked out and did things that I didn’t know. I honestly told them that I was glad I was not in a relationship, because I thought if I had an orgasm when my brain was swelling I might die. This brought laughter and a lot of, well you’d go happy. Not satisfied with that, the questioning on this area continued, now I don’t know if it’s because they were teenage women or if they were just a fun and twisted group. They started joking about buying me a vibrator to try to then get back to them as to how I go, and if I die they will attend my funeral.

This also led to questions about can you have sex if you have an ovarian cancer, the answer is yes when you are well enough you can. “Can you have sex with breast cancer or if you have one removed?” Yes of course you can, you just need to be well enough and in the right space and be able to talk openly and honestly with your partner about these things.

Why am I telling this? It’s simple, if these girls were asking this of me, how many other questions are there that don’t get asked of the medical profession because of the shame factor or Aboriginal people. I am blessed that I can help others and answer what might seem strange or funny questions, but these are really serious questions. We need to have someone to be able to talk to our people to ask these questions on behalf of those who feel shame to ask them and we need somebody to answer these questions.

About proudblacksista

An Aboriginal woman. mother of 4 diagnosed with an inoperable brain tumour 7 years ago.I want to share my story to help others. I am working to help other Aboriginal people face the battles of Cancer. Email me with your stories or concerns at View all posts by proudblacksista

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