Avastin

So last Saturday (31 October) I began to deteriorate. I went to Geelong and suffered from a seizure, which was devastating for me. Julian and I drove home wondering what it all meant. With that we contacted the oncologist and had a meeting with him on the Monday where we talked about our options. Clearly not doing anything wasn’t an option. What treatments were on offer?

I guess what I was quite positive about… I was positive thinking, and it was devastating because I thought it would be good without treatment. It was confronting that I had to have treatment and it was still going on. Having more treatment and the never-ending saga of all that was quite difficult to work through.

But we talked about various options and the best option was an injection every 2 weeks and every injection is $5000 a go. At the moment they are talking about twice a month so a very expensive habit. Julian describes it as a heroin addict because its so expensive but it seems to be the most obvious option.

Luckily I have saved some money so I can at least have 8 treatments before I run out of money. So I’m grateful that I’ve been able to do that and there will be other options with that if it all goes to plan. If it works there will be more chemo but that’s it.

It’s about the drug itself. It is quite harmless in regards to side effects. It reduces the swelling itself so I don’t have to take steroids.

One of the things about it not working and last week was I had to increase the steroids and not sleeping very well and that had its effect. So back on that wagon – so I seem to go up and down and even it’s hard trying to be positive about it. Julian is being great and he is looking at me and saying “how are you going? Well?” and part wants to say “yes” but it’s not truthful.

Sometimes it’s really hard and other times I think “No, I’ll get through this” so it’s rollercoaster emotions.

What I’m finding now is any twitch now I’m wondering what it is - even more so - because that’s a sign of bad things obviously; so it’s exhausting. I don’t’ know what’s exhausting - steroids or I’m ill anyway.

Sometimes I think “what’s it all about and what’s it all for?” but I don’t want to go there and I want to survive and get through this. What gets me through, I’m an optimist - but where does that come from? and why do I want to stay alive? It’s not my time. There’s lots of things I still want to do.

So I’ve had one injection of the drug and when it finished it even felt that it was already being effective; straight after 1.5 hours of being injected. Eventually the treatment will only last 15 minutes (they do it slowly the first couple of times so there isn’t too much impact). This time I’m wondering “is it going to work?”

I recognize I just need to catnap all the time – if I don’t I don’t sleep at all and that doesn’t help. This morning I was up at 4am so I got up and did some relaxation and that seems to help things. Jules goes to work and I sleep for an hour and that helps and I look after my body. I still do affirmations – “I still want to live! I deserve this!” People love and care for me and are being supportive people.

Deanne has started to campaign on my behalf by lobbying the Minister of Health, (Nicola Roxon). It’s lovely to know that she’s behind me in doing that because it’s not something I would do and I know it helps her do something for me. Julian is very supportive of that as well, and Deanne’s husband, Fred, is thoughtful and there is a network of people campaigning and looking after me which is a bit of a thing to discover.

Our friendship has always been good. It is easy. The 4 of us have got to know each much better and that has grown out of this controversy and I don’t think we would have done that if this hadn’t happened. We are all relaxed with each other. If I wasn’t ill it would be hard to discover that it’s easy.

Each day I’ve started to do weights - a bit more each day; which is good. I’m also doing PSE quizzes you can do. You get a score each day and I’ve got a brain of an 80 year old but I’ve only just started doing it so hopefully doing mind games will start helping me that way. And also I’ve been watching “Sex in the City”. I’m on the 5th series so going to have to get another series when it’s finished - which keeps me distracted.

All those people being behind me; people are coming out of the woodwork wanting to help; which is all really positive so you can’t stay too negative about things. Just getting through it all and coming out the end. And perhaps appreciating life and people and those around me and how important people are in my life. I have some beautiful friends and I love them even more so that’s got to be a good thing.