Just a quickie

While I try to get into the habit of posting daily and putting my thoughts down, they will be snatch and grab pieces. I was just sitting here doing my morning ‘read’ and thought about all of those people I have always felt for that have been diagnosed with cancer and thought how are their families dealing with it, to realise D’oh, I’m one of those people and my family are dealing with it -it is now part of our life. My children has accepted it, very well for the most part, and life goes on. None of us are happy about it, and yes there are things we have put off from doing – when we moved I needed to get a job to pay for the bills – that hasn’t happened, firstly I expected to be operated on much before now, but also how do I start a job knowing I can only work for a few weeks? In some respects I wish I could have just gone and done that, but my sense of fairness won’t allow me to do to someone else.

In the meantime the 10yo has come down with a nasty fever and is miserable at the moment in bed, just hoping I don’t get it as I’m not sure whether they would then do the operation? Bugger these sick people spreading their nasty germs everywhere!

Off to tidy the house now before my mother comes up to look after the kids. ciao

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3rd time lucky

I’ve had two attempts to write new posts, but they haven’t happened, I can’t even remember why I didn’t finish them…so lets give it another go.

I am currently watching the Rise for Alex clip on the footy show at the moment – I will repeat my comments from earlier posts, life could be worse. Everyone has problems and each problem may be structured the similarly, but will have a different perspective for each person. Alex McKinnon is dealing with his loss of movement fantastically. He has a heap of positive people around him and they are helping him get on with it, but as he said when he was asked about bad days – it’s not days so much, it’s the 20 minutes here, the half an hour there that he cries and “chucks the shits”, then gets over it and gets on with it, and really some people deal with really big things really well, but the small things just overwhelm them.

Today was the girls school sports carnival. They had heaps of fun. We are not a sport oriented family, we are not athletes, none of us are likely to be stars on the track, but we believe in doing our best, regardless of what that is to those around us, if it is our best, there is no more we can ask for. The oldest ran the 800m race first thing this morning. She has never run a full (long distance) race and today was no different – but she ran most of it. She didn’t come last, she ran and walked and ran and walked and we could see the effort she put in, it was great. After about 5 minutes, she came over to where we were sitting, all but crying. After a quick chat to her, I realised that she had put in so much effort that she was literally just exhausted to tears (as I discovered later, she thought she had asthma, and was very scared). We cooled down, and she went back and continued to try. They did so well. But having been at the school for 3 months the kids are struggling to make friends. It’s hard – I’m not in a great position for networking – I can’t start anything because I can’t complete it yet and they are not comfortable asking people for play dates, we’ve had a couple, but that’s it. To go from seeing friends all the time after school and weekends to not at all has taken its toll. They are enjoying the beach, they are enjoying the museum and the aquarium, but not so the lack of friends. This is the deal breaker for the oldest especially, and she is starting to flounder. There are different issues with the youngest one, but that’s for another day. What’s most difficult is the move here was under the terms that I took on work to pay the additional bills. We’re still accumulating the bills, but I haven’t got the job. It’s crap really, I’m not unable to work, but with the waiting, waiting, waiting, I can’t commit, and I cannot lie about being available. While I’m actually enjoying my time at the moment, what it means is we cannot afford for the kids to join clubs to become involved and make new friends. All those things that would make it great, just isn’t happening. I still believe it will, and do not regret moving, but it’s hard…

If I haven’t mentioned it, I’ve got a date for surgery – the end of July, which is fantastic, because it finally means I can get on with life. I’ve got another maybe 2 months of sitting pretty, but so looking forward to being in a position to start looking for work and take things on later in the year.

Day 24 – Public Vs Private

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.

Day something – I will have to work out the timeframe sometime

First blog – why am I writing a blog?  Mainly because I was diagnosed with breast cancer and I am supposed to diarise my thoughts.  Well I’m crap at writing, so I’m typing, and I don’t really want to bore everyone on FaceBook, and really, that needs to be a separate thought process.  A public one, this is one that is somewhat more incognito.  I won’t say private, that would be a passworded word document on a removable drive.  I just need to be able to write, knowing that it is public, and thus must be real, but also not something that will be read and judged by all and sundry.  If you care to read it, you can, if you don’t, neither you, nor I need to worry about it.

You know how some people just always seem to have their life in order?  I’m not one of those people.  Don’t get me wrong, there is much good about my life, and there is very little I would go back and change, but it would be nice one day to just be able to say, Hey, this is where I want to stay!  I think I’ve found that place, of course I will still want to go away on holidays, we’ve only been here 5 weeks, but once this nasty business is sorted out, NewTown seems to have everything our family could want.

I was so excited at the beginning of 2014, I thought it was all finally coming together – we had decided on NewTown as a good place to move to. We had been up during the school holidays and everybody enjoyed it – despite the sadness around leaving friends.  We had been up and chosen a school for the girls.  They both picked the same school, and almost immediately, After a bit of searching we found a house we could afford in the area we wanted without having to stress about selling our investment property.  Everything was falling into place.  I almost did have to pinch myself to make sure it was real, but time clicked on, and everything did start to fall into place, I had to start organising what we were taking, making sure the girls had music lessons to go to, that everything at school was ready for them to start the next term, though Dad was a sticking point.  He has just found his niche, the Speedway was starting to happen for him, he had found a passion for running it – even if it did stress him out a heap, but his effort was paying off – he really didn’t want to leave.

5 years somewhere where I wasn’t happy was enough for me though, and our plans walked forward.  It’s not that I didn’t like my friends, I just couldn’t stand the general atmosphere of the town, everything was an effort for just about everyone, including teaching the kids (not all the teachers, but most and my kids – all kids deserve better), so here I am.  5 weeks down the track, still waiting to decide exactly where I’m going from here.  Clear as mud? 

In mid April 2014 I was diagnosed with breast cancer. This is my story, bow, then and when!