To quite a few people it may seem like I’m focusing on my cancer, and to others it comes across that I’m ignoring it, but really I’m addressing what I need to, and getting on with life the rest of the time. I have spent the best part of the last 4 to 5 weeks cleaning and painting the hovel of a house we have just bought so that we can live in it without squirming every time we need to touch anything, then settling the girls into their new school and trying to set up some sort of life for them. The rest of the time I have been dealing with Telstra, our health insurance company, real estate agency, doctors, hospitals and travel agents. In short, I really haven’t stopped to deal with anything, I have dealt with what is in front of me, and there hasn’t been time for much more.
Since moving we have had some lovely family moments (when the whole family is here), and I have spent some quiet time enjoying my new surroundings on my own, but other than that it has just been a ride I haven’t been able to get off. I chose to go private as they offered the opportunity to have the mastectomy and reconstruction all in one day, and as long as they are correct and the DCIS is still non-invasive, then that’s as far as it goes. I have needed to trust the health care professionals around me and that they would do what needed to be done, and so far they have. That is until I went looking for help. To be fair it wasn’t one of the health care professionals that ‘let me down’ it was the surgeon’s receptionist who made me think that I may be better off in the public system. She didn’t know, didn’t have a back-up plan, didn’t think outside of her box, and was waiting for the nurse to come back before she did anything else (mind you that’s at least 3 weeks the nurse was on leave and I had no back up during that time either). This was all good while I was busy and while I was doing what I was told, but the moment I had a question to ask, there was no one available. What do you want to do she asked, what are my options was my response, she didn’t know, I needed to tell her! A bit of an impasse.
For the first time in ‘My journey’ I felt helpless, and hope-less. Not hopeless as far as I was useless, the true sense of the word – without hope and that for me is a completely foreign feeling. I have had sad moments, and bad moments, and times when I face insurmountable brick walls, but I am never without hope. If you can’t get over, go around, or under. There is always a way, it is just a case of finding it, at that moment on the phone, I lost all hope. If only momentarily, but it was enough for me to feel as though a death sentence was being handed down. It may sound like I am over-reacting, but in that moment, that is truly what I felt. When my clarity returned (and that is the best way I can describe it) I managed to ask the receptionist about the breast care nurse, and managed to get her to contact the other nurse available (even though she was not on the private list) to contact me. After speaking to the nurse she gave me a lot of other information that I wouldn’t have had otherwise, and reassured me that all was still well with the world.
I’m now transferring over to the public system – it’s mostly all the same people, but there will always be someone available to speak to. There is so much more than just the surgery involved in this process. While I may be able to access the best in surgery outcomes and advanced options, it has become apparent that we will need so much more than just the surgery completed to get through this.
I don’t know what’s available in the public system, I don’t know what we will need, and I do mean we, as there are so many people around me affected by ‘my journey’. The obvious are my husband and the girls, then there’s my brother and mother, in-laws and other extended family, my neighbours and friends (old and new), school teachers, extra-curricular contacts, the list goes on. Having spoken to the ‘breast care nurse’ there are places for all of these people to go if they need to publicly, nothing was mentioned during my appointments privately. I don’t know whether this would have come out eventually under the private system, but it isn’t a priority, but in my world they are a priority.
Whilst my breasts are a part of me, they are not who I am, and I do trust that the Drs will do their jobs and do them well in removing the cancer and ensuring the reconstruction happens in a timely manner and the best available, whether public or private, but for me, now, it is those other issues that need addressing. My husband needs to know that it is happening to him too. It might be my body, but it is our life, that stands for the kids too.
So where am I now? Booking into the public system next week. Wish me luck. Wish us luck.