A Different Slant

May 2 2010

After two weeks of Hayley updating the blog I've been chomping at the bit to get back behind the keyboard. It was interesting to get Hayley's perspective on things and I'm sure that everyone who read the two updates could see how incredibly difficult every week is for the mother of a little girl like Camille.

I come from a family that don't tend to talk about feelings too much (if at all really), so I was a little surprised when my parents visited Camille and I in hospital on the way to the airport mentioned Hayley's updates. I think it was their first real insight into how Hayley was feeling and they feared for Hayley blaming herself for what has happened. As we know this is obviously irrational but moments of clarity are few and far between for us in this life, every decision comes with a degree of “if only” or “what if”. My father, who turns 70 this week, even said “She's a wonderful mother”, which of course is true. Hayley's dedication, commitment and care for Camille couldn't be better. I actually wonder whether my father sees some of his own mother in Hayley, they were quite similar in many ways; short, headstrong, in possession of a pristine hair-do and completely down to Earth.


Hayley got to describe Camille's wonderful birthday party in her most recent update, which she did perfectly. We all of course have different views of the same event and for me it was more emotional than thought it would be. As the entertainer started her act she asked if the children knew whose birthday it was, Lucia shouted out without hesitation “It's my little sisters!”. For some reason I choked, and for a minutes afterwards I hid behind our video camera at the side of the room a tear away from breaking down. Camille was so happy, it was just what we all needed. Now that she is able to walk again it made me feel so proud that she could run and play with all of the other children. She was the centre of attention for all the right reasons.


There was another incident during the party which is worth noting. I sat down with Camille for lunch next to Hayley's friend Alex whom Hayley had accused me of fancying a few weeks before. I'd completely forgotten about that incident until, half way through a sausage, Alex said laughing “I read your blog about Hayley at the soul night”. As the remainder of the sausage passed through my lips like a train through a tunnel, it dawned on me that I had been highly embarrassed just days before. I did what any self respecting man would do in that situation; laughed hysterically, mumbled something incoherent and stuffed a pile of smoking hot chips into my mouth. I think I may have got away with that one.


This week was the last in the chemotherapy cycle, so it meant a long week in hospital. Camille's Hickman line had been red over the weekend and when Hayley took her in on Tuesday they held back giving her the chemotherapy until some intravenous antibiotics had taken some of the anger out of it. Hayley and I swapped again on Thursday afternoon and before long I was rocking in the corner of the ward like cuckoo in the nest. The days on the ward are extremely long and as Friday was a day without visitors it ticked by second by second. Camille has become a really big fan of puzzles, generally of the jigsaw type. Unfortunately, the C2 ward is circulating only a handful of jigsaw puzzles and before the end of Friday we had tackled the Fifi puzzle four times, the Night Garden puzzle twice, the A to Z puzzle a mere seven times and Peppa Pig had been assembled into double figures. By the time Hayley arrived on Saturday, Camille was throwing them together like Tom Cruise in Cocktail. I did think she'd gone a little far when she threw the Stingo's face piece into the air and caught it between her butt cheeks.


Hayley and her sister travelled up to Burton upon Trent on Saturday to attend the Liberty Rose Trust charity ball. They stopped at Addenbrooke's en route to see Camille (and me...........argh who am I kidding). At this point she'd finished the chemotherapy and was just being hydrated so we were able to go out to the concourse and buy some goodies. Amos was on duty over the weekend and like the teachers pets we are, we purchased an extra muffin for our favourite oncology consultant to brighten up his day. By the time we got back to the ward, Amos had made a break for it and gone home, leaving us with one muffin too many. Hayley and Kristen left just before Camille was discharged, and just before I managed to make another fool of myself. One of favourite nurses, Jo, is about to go off on maternity leave and as an act of goodwill I walked up to the nurses station bold as brass and asked her if she'd like a “good luck muffin”. Enough said.


Camille had been fine over night and enjoyed a long and exhausting play with her big sister when we arrived home. Today was a different story; soon after Hayley arrived home Camille began to fade and laid on the sofa in her mummy's arms. As the minutes ticked on she looked more and more pale and weak, before long she was sick. In fact she was sick a lot, even the water she was drinking was coming straight back up. Her temperature was also a concern as it peaked at 37.9c just 0.1c away from 48 hours in hospital. Amazingly, she came back down and looked a lot better at bed time, but a night off the feed is in order, perhaps tomorrow will be a better day.


Next week sees the next scan take place. There is no guarantee that this scan will change our current treatment and to bring forward the operation that we have been waiting nearly a year for; but we know we are getting closer. At the moment, for me, the brain operation that Camille is going to have is a distant speck on the landscape, something that doesn't seem real. I'll probably sit in this big translucent bubble right up to the point when they hold the oxygen mask over her mouth as she falls in to a deep sleep. That's when my heart will sink at the same pace as her eyelids shut, all the time knowing that for the next six/seven hours I'll be awkwardly trying to guide Hayley through the torture of not knowing what is going on, whilst inside, my heart will be laying flat between my feet ready to be stepped on or kicked.


By this time next week we may know a lot more about our lives over the next few months.