Thursday, 31 October 2013

I just want to start this entry by saying I don't see my psychologist anymore because the Australian government under the mental health scheme only subsidises 10 visits. I have heard recently That I may be entitled to a few more and have booked myself in to see a doctor to find out. Otherwise if I want to see my psychologist it costs $270.00 for 45 minutes. Ridiculously expensive and I don't know about anybody else but we cannot afford that. The scheme works over the calendar year so come January I can go back.

Since I haven't been seeing her I have been actively pursuing other counsellors/ psychs and as yet not found the help I need but will not be giving up.
I feel the need to explain this because of a comment that was made recently.

when I write In this blog its to let off steam, express my emotions and try to make sense of my life and my feelings as I let those feelings out. I'm always trying to find ways to cope and function as I'm well aware I need to keep myself together for the rest of my family. Fact is though, there's no getting away from my concerns and the space in which my mind now exists. And if I want to have a big cry, and feel like absolute crap then I should and, it's healthy. If I worry about the future and struggle with my life at times as well, well that's just normal in this situation. It can't be fixed, it doesn't go away. I'm sadly behaving "normal " given the situation.

A few weeks back I was fortunate to have a chat with Dr Goldman via Skype. After much discussion about Jayden he said "I'd like to be able to say to you to try not to worry but only a parent who doesn't have a child with cancer would say that". He's been doing this long enough to know that no parent who's travelled this journey will stop worrying about their child's future. It's not possible and only a parent who's travelling it would get that.

When someone tells me to not worry or stress less, or i need to be put right, then they clearly have no idea what it's like to sit in my shoes and it's difficult not to be a little bit pissed. It's difficult not to shout "you just don't bloody get it". More than anything, comments that brush off my concerns like that just make me tired. Tired of wishing people understood. Tired of feeling this way and wishing it was in fact just a case of " just stop worrying". But it's not. If only it were that easy.

Yes my son had a clear scan and anybody who knows anything about brain cancer or childhood cancer or anything to do with cancer in fact, knows a clear scan doesn't mean he's cured. In Jayden's case with the nature of his type of cancer, Nor does it mean everything will be fine next scan, next month, next week, or even tomorrow in fact.

Don't get me wrong, when his scan is clear, I'm ecstatic. But I'm not yelling "yah, back to normality and all is fine forever ". What I'm feeling is a huge sigh of relief because we have been blessed with "more time". How much time we don't know but wait anxiously for the next scan, hoping and praying like crazy that that scan is clear too.

Yes, I try my damnedest to live every moment and cherish every second of everyday and combine that with trying to be normal. But there's nothing normal about this situation.
I no longer wake in the morning thinking about my day ahead. I wake to my little mans sweet face and think how many more wakes will I get to see that face. He woke me this morning particularly early and I was exceptionally tired but I couldn't be annoyed. How could I waste a second with him and be upset. And if I do I beat myself up about it for ages.

I looked at his little face this morning as he sat up in bed smiling at me and thought of my brother. It must have been the way he smiled but I thought of him. Inside I felt like crying. The knowing that there's a huge possibility that Jayden will never reach adulthood like my brother. Then I thought of my mum and her time with my brother and how I wish I could feel the way she would have when he was young.

But I don't. Those thoughts and feelings were taken from me the day Jayden was diagnosed. The hopes and dreams for his future and the future of our family together.....Gone. Replaced by a desperate sense of hope for the future. A desperation that makes me hold him longer than normal in a cuddle, cuddle him all the time, kiss him more, watch him more, with the fear of knowing one day I may not have him with me. When that day is I don't know or if that day will come at all. But I live in that very real uncertainty and nobody knows what that's like unless they are living it.




I spend time thinking about whether I spent enough time with my son today and was it enough quality time. And if not will I regret it later? Did I pay him enough attention? Should I have taken that phonecall to chat to a friend when he wanted me to play trucks? Will I live to regret that. Will I live to regret I got frustrated when he needed something and I was in the middle of doing something? I analyse every moment of everyday and worry about whether or not I made the most of that day with him. And if I feel I didn't, I beat myself up about it in the wee hours of the night.

Another cancer mom I know wrote recently about how she felt 5 years from her sons treatment ended and she still feels like this. It doesn't change with time. You learn to manage as best you can by getting up every morning and going through the motions but inside nothing changes. The thoughts, feelings and emotions are not the same as they were before our sons was diagnosed and they never will be again.

I'm exhausted wishing people could understand that. I'm exhausted feeling like I exist on a completely different planet to others. A world within this world. .
But just as I can't expect people to understand me I wish people didn't expect me to be like them. That just because they think it's ok, I should feel ok. Because it's not ok. None of it is, and it simply never will be. Not the " ok " I want it to be. Instead I have to be grateful for everyday I get, and I am. Every second, every moment and I don't want to miss one.




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