Apologies, I've not updated in ages. No news is good news right?
Christmas has been and gone now and we move into another year. Our Xmas was peaceful and quiet - just how we like it. 2015 will likely have new experiences and challenges for us all as a family, not least Niamh's exams for a start. Revision has begun in ernest - well kind of in ernest. It's begun anyway. Niamh is aware that she's on the backfoot with her schoolwork having missed so much so she's going to have to put a shed load of effort in to pass her subjects this year so she can move on to the next level.
You'd be forgiven for thinking that two years down the line that everything is back to normal for Niamh - it isn't. Don't worry, that's a very common perception made by many people who've not had to deal with cancer in their child. Things are unlikely to ever be normal for Niamh in all honesty. The side effects from her tumour damage, spinal operation and subsequent psychological issues are far reaching and a magic wand can't fix them. They are more like things she has to learn to live with and this will take time. It's been agreed that her physical issues - mobility etc - will not improve further. She will always have foot drop, balance issues, tire easily and a limp. This sort of partly leads into her psychological issues and social anxiety. She has problems with her friendships and peers now as she simply can't keep up with them and her anxiety and worrying constantly makes it that she can't talk about it, can't explain to anyone why she is like she is so instead she prefers to just lock herself away from the world. Our oncologist has said that this is common with many teenagers, they find it hard to talk about cancer and what they went through as they don't want to relive it.
Her anxiety hugely effects her school attendance too - she's lucky if she manages to attend half of her ( already) reduced timetable. Again, this is something we've had to learn to live with.
So, to reiterate, she is currently cancer free which is amazing but, we are constantly on eggshells with that one to be honest. Niamh's type of cancer is so rare that there isn't a name for it and subsequently - no research into it. We have no statistics, no trial results to view, no prognosis either. We have no information on how it might behave except for some very unpleasant googling I did when she was first diagnosed. I was horrified then so I have not googled since because my child is my child and not a statistic. Yes, she's cancer free but, we don't know what the future holds for her at all. Cancer aside, she lives with awful debilitating side effects that are unimaginable to other kids her age.
So, sorry for the long post, it's the shitty month of January and that means it's diagnosis anniversary time for us. We've had a nice peaceful Xmas and we have lots to look forward to once we get Jan out of the way. I just really wanted to outline that no cancer doesn't mean no problems in many cases. It's rare that anyone gets out of that crap unscathed. I can't even scratch the surface on here with what Niamh has to live with on a daily basis.
I'll try to update on here more from now on, life just seems to keep getting in the way......