Step Into The Unknown

Sep 1 2009

On Friday I was quite low as I dared to type about some quite personal feelings. I would like to say that it was due to the beer or that I was being over dramatic and in fact I was still feeling upbeat.

Unfortunately not. In fact, I can't ever remember feeling this low or being so tired, even at diagnosis. At the beginning I was being upbeat and positive in an attempt to drag Hayley along, so that she could ride on the wave of positivity and get through this step by step. Hayley's mood and feelings have plummeted in recent days and weeks, far lower than I could probably describe.

My life at the moment is clearly based around the family. While Camille is at home and not in hospital, we tend to be around each other a lot. With this comes complications; firstly, Lucia is a four year old who resembles Tigger as she bounces around the house with energy to share, while Camille now with her new found ability to walk wants to follow. She is still unable to walk by herself and therefore we are constantly trying to catch her as she leaps from the sofa or being dragged around the kitchen. Camille has also become very agitated in the last week or so; it could be general frustrations, but it can be quite upsetting.

The hardest element of family life at the moment is how low Hayley has become. She has no drive to really interact with anyone; in fact I try to talk about things like the fundraising, and get little back. I try not to talk about Camille's condition too much, because I don't think it helps, especially Hayley. I fear for her, I fear that every time I have gone out with the kids, I will find something I don't want to when I return. This is not melodrama, this is a real fear. Hayley's sleeping a lot at the moment (I say sleeping, she's laying in bed but not actually asleep), meaning I am sitting in empty rooms with little or no light thinking. I didn't ever think that this could happen to me, I had such a normal life, an easy going normal life.

Hayley and I need a positive result at the scan in a couple of weeks. If it is anything but positive I will be very concerned over my families future and how we progress. I am still trying to be the positive, strong one; but rather than keeping my head up high, I can feel myself slowly sinking into the quick sand.

Tomorrow, I finally take a trip out on work business. This is the first meeting outside of Ipswich since diagnosis. Again, this holds many fears for me, specifically around Hayley and the girls. I'm no miracle working saint at home, but two hands make lighter work, and with Hayley not feeling very good at all, how is she supposed to cope with the two girls with so many different needs.

A few weeks ago the fundraising was helping Hayley focus on positives and allowing her to think about relevant things that she didn't have to constantly dissect . The first event is still the Three Peaks Challenge in October. We've had our first meeting together on Sunday evening, and although this is all falling into place, it has become the least of my worries.

My life has changed again since diagnosis. Back then I managed to focus on each stage as it arrived, now I am focused about getting through each day without breaking, focused on making sure that when I sit in an empty room, there is enough light, making sure that the girls can still be happy even when mummy and daddy are falling apart. I think the first sign of weakness is letting in thoughts of the future, beyond treatment. Those thoughts are creeping slowly into my dreams at night.

Camille, Lucia and Hayley are all tucked up in bed. I am going to crack open a can of lager and consider new ways to be able to give up work, not because I hate my job, not just because I am struggling to have any kind of focus, but because I am scared of what affect me working will have on the girls.