This isn't going to be a particularly happy or entertaining or funny post. Not that I'm all that good at writing entertaining or funny posts anyway. Gosh I sometimes wish I could write hilarious blog entries like this one (click here) which still makes me laugh everytime I read it to the point that Terence thinks I've finally completely lost it or entertaining posts like one of my new blog followers, John (who lives somewhere in the UK I think) writes.
Just recently John shared his misfortunes of falling off his bike (click here) and sorry John, I did laugh a little bit, I didn't mean to - but honestly if I was there I would have totally been completely shocked and rushed to your aid.
Was rather relieved that John let me know afterwards in one of the comments he left for me that he was the one who found my bike computer gadget thingy that I lost during my recent bike ride and that he is thankful because as I would have seen his bike needs all the help it can get. Thanks John for taking good care of Bert for me (that's what I called it, which in hindsight was not the best decision because of course once you name things you get attached and... well you know how it goes). I was about to put up some "have you seen my Bert?" posters and now you've saved me the hassle.
Unfortunately John, Bert isn't very good at helping a bike with its brakes, but I'm pretty sure it is good at laughing. I'm sure that at times when I would go as fast as I possibly could go and it would feel my legs are about to fall off, I'm sure I've heard it laugh at me before...
But anyway, I'm really sorry that this post isn't going to be a particularly happy post, it is more just a bunch of rambling thoughts so if you'd rather skip - I do understand.
Every year around this time of the year I have more quiet / reflective periods. Usually not quite as early as now, but more as we enter May. Although usually you would not know that I might have those periods.
You know how you just naturally know when it is Christmas or New Years or your kids' birthdays, you don't need a calendar, you kind of just know. Well it is the same in our situation. Every May and June I am acutely aware of specific dates. Beginning May 2007 was when Bianca got tonsillitis. That's really when things started going wrong even if we did not know it then. On the 31st of May 2007 I discovered Bianca had a big swollen lump behind her head, it was the same day I received a great job offer. On the 1st Caitlyn (who was 3.5 months old) started daycare. On the 2nd of June 2007 Bianca was admitted to hospital and needed a blood and platelet transfusion. On the 4th my whole world came crashing down when we were told Bianca had leukemia. On the 5th she got her very first chemotherapy treatment and I had to tell my new boss I would not be able to work at that stage. It is not that I try and remember the dates, but I just know when they come around.
So every year I find that May is a bit of an anxious time for me. It is almost as if you switch off your bedroom light at night and you have to walk back to your bed and in that instant the room is pitch black dark and you expect that any second you will bump your foot against the bedframe or something and you kind of blindly and slowly walk forward, almost holding your breath with your arms reaching out to try and prevent the bump and when you reach the bed without injury you are kind of relieved. It is a bit like that.
During May I am usually incredibly aware and somehow always pick up on little things and I find myself wondering "why does Caitlyn have bruises on her leg?" "I wonder why Bianca seems a bit pale" "Caitlyn's cold seems to take a bit too long to go away" and it is almost as if you are expecting that we will once again be dealing with child cancer. So by the time June arrives and both kids are fine, it is almost as if I breathe a sigh of relief. I try hard not to do it, but then we lost our innocence in 2007 when we learnt that Bianca's tonsillitis was so much more than just tonsillitis. That actually she got tonsillitis because she had leukemia.
And the hard thing is others (or most people I should rather say as there are a few who work hard to make the effort) don't get it. Especially now that Bianca is doing well at the moment. Now I find more often than not people are not interested or they try and brush off what you are feeling or they quite obviously disagree with your concerns and so as a survival technique I would often just hide behind a smile and "I'm fine". It is just easier that way. Well often I am really fine, but there are the odd occasion where you kind of wish you were able to just share with others and they would kind of just be there. Or maybe you don't want to share, but you want others to hang around as you go through your quieter moments. You don't want them to understand as such because you don't want them to walk the road you walked. You just want them to be there and allow you to share without making you feel like you are just being silly.
There were two particular friendships that I lost. One in 2008 or 2009 and one around May 2011. I won't go into detail about it all, they were both pretty complicated friendships and in hindsight I don't think we had all that much in common. I found that the expectation from these two were very much that I would always be there for them, always listen when things were rough for them, always "carrying" them when they felt down, but boy the moment I had a bit of a down moment or a quiet period, it was as if I didn't exist anymore. They simply had no interest being there for me. It was always just about them and the things that were important to them. Both of them ended up avoiding me completely in the end and so the friendships kind of died in the process. And that's fine. For me a friendship is very much give and take. I'm more than happy to be there for people whenever they have tough moments, but I do want them to be there for me too sometimes.
I remember way back in 2007 how incredibly lonely it all felt. We very rarely had visitors in that time, we had almost nobody calling us and we spent so much time in hospital that it started feeling like a second home. I remember one evening after a long day at the hospital (Terence took over from me to stay with Bianca) and it must have been about 8pm Caitlyn was fast asleep in her car seat and I had to go to New World to buy something that I could make for my dinner and I walked up and down the aisles at New World with Caitlyn asleep in her little carseat in the trolley and I looked at the people around me and thought "wow, these are the only people I ever see" (other than hospital staff, other child cancer parents and the people at CCF).
And that is where CCF is and was just so amazing. They kind of just get it. If you want to talk, they listen, if you don't want to talk but just want them to be there then they are simply there. The other day I asked Marg a specific question (and she's not with CCF anymore, but she knows an awful lot). I've been having a few concerns and thoughts running through my mind. And as much as people think "you must be so happy that this is all over now" it actually isn't. The active treatment is over, but this is a new part of the journey. A new unknown. A different set of concerns. And this time it is harder because Bianca looks no different to any other 8 year old and so a lot of people just don't get why we could have concerns. Marg called me and we must have spoken for well over an hour. The nice thing with Marg is that she really does get it - many years ago she too had a child with cancer. And not once did she brush off my concerns or disagreed with me or made me feel like I'm just being silly.
I used to believe that when Bianca's treatment finished things would return back to normal. And mostly it has become normal again. Although I find that this part of the journey is perhaps just as lonely as it used to be. A different lonely though. Now we actually do see people. We've managed to form new friendships (that I am extremely grateful for). A few of the people who stopped talking to us back then started talking to us again. We don't have to be isolated anymore and yet the isolation is still there. Because now people don't want to hear things that relate to the world of child cancer. That sometimes you might feel sad or overwhelmed. That sometimes you might have concerns. They can't really see why you might still feel this way. It is better and easier for them when you are simply just "fine".
In saying that though there are a few who really do make an effort to be there and for them we are truly thankful.
Apologies for this very long and rambling post.