Part II of II - Hayley's Blog

Apr 29 2010

Saturday morning, once again Lucia was up with the birds, she was pretty stealthy as she jumped out of her top bunk and tippy toed over to our bedroom.   Martin quickly installed her in the living room with Peppa Pig on the TV then hopped back into bed hoping for 5 minutes before our littlest called for 'Daaaaaaaaddy'.

I lay in bed for a few minutes and reflected on how different our lives were from a year ago.  It almost incomprehensible. I heard Camille's voice and immediately knew I didn't want to go to that sad place this weekend, I didn't want to doubt our future, the milestones we have yet to overcome or the emotional times we will have to face.  This weekend was Camille's 3rd birthday, no 'what ifs', we would celebrate it in the best way possible, but not because of what she has been through or in fear of what the future might hold, but just because.


Camille face when she saw all of her presents was very memorable! she was absolutely delighted with all of her presents, although I was slightly concerned at how she opened presents and discarded the contents so quickly, you know 'when I was a child..................' Ok lets not go there, but you get my drift? We bought her a market stall, which she loved, but which Lucia very quickly commandeered, she was the shopkeeper and Camille was only allowed to buy an egg. Camille carried that egg around with her all day.


Our good friends Mags and Nick and their beautiful kiddies Max and Freya came down from Manchester to celebrate Camille's birthday.  No sooner had they parked up at our front door looking very very weary from a 4 hour non-stop drive, we had them back up in the car and down to Pizza Express where we had a table booked. We spent the afternoon eating, drinking, and having a wonderful time.


As we only see Mags and Nick once a year we decided to spend Saturday evening with a takeaway, a few bottle of vino and an agenda which included 'putting the world to right', I recall politics was the main topic for discussion, simply because I am yet to meet anyone who knows who to vote for!  we  didn't make much headway on that one.  The drink flowed and I started feeling like a teenager again, but not in a good way. It was 1am, my head was spinning, the drink was rising in my throat.  It was time for my bed, I remember crawling up the stairs and into bed feeling like I was on some sort of flying carpet.  It was Camille's birthday party the following day and we had 60 people coming. My last thought was 'oh sh*t'.


There are only so many times you can ignore the sound of 4 children coming from the floor below you, I tried every tactic. Earplugs in, pillow over head, then duvet.  Nope, they were still there, worst was that I could also hear 3 adult voices, meaning I was sure to be conspicuous in my absence.  It was 8am.  I crawled down the stairs, still wearing last nights clothes, last nights mascara, hair pointing in a 90 degree angle.  I had no shame.  My head hurt too much.


Nurofen swallowed with 2 litres of orange juice, a long hot shower, most of which I spent pinned up against the wall (our showers are too powerful, they are freaking painful) and a handful of Haribo's and I was ready to go.  Jimmy's Farm was our first stop, a lovely morning spent squelching around his farm, the highlight of which was the most wonderful hot dog I have ever tasted.  Would have tasted better if I wasn't being eyed up by a huge, ugly sow in the field next door.


Once home, we get the kids bathed and in their finest as Mags and I leave early to get the 'party started', lucky we did as the staff at Martlesham Squash and Leisure did b*gger all to help us out.  Steff from 'Steff and Nonsense' was our entertainer booked for the event, she turned up and set about getting herself ready.  The hall looked great and Nanny Patsy had excelled herself with the 'Timmy' cake (as had my sister with her fantastic cupcakes!).  The party girl and her gorgeous sister Lucia walked in at 3pm on the dot, Camille was completely overcome by what she saw (Lucia less so, the Diva!).  Camille spent the first 15 minutes tucked very safely behind my knee, but as her friends and family arrived, her bravado grew.  As Steff got to work doing her magic show Camille sat on my lap and started to participate, even letting Steff pick her up at one point.  The children were absolutely mesmerised by Steff, she was brilliant, absolutely fantastic. 



After the kiddies sat down to sausage and chips everyone came to the 'Timmy table' to sing happy birthday.  This was my only 'wobble' of the weekend.  Camille looked so happy, she was so happy that I cried because of it.  Seeing my girls laughing, dancing, screaming, singing and generally having an amazing time, something they both deserved so much was overwhelming.  The room was full of  friends and family, people who have supported us immensely.  Without wanting to sound too much like Mr. Barry White, there was a lot of love in the room that afternoon.  I have never felt such support. 


After another 45 minutes of dancing to Abba, the Hokey Cokey and dancing in the snow (yes snow), it was time for a lot of very happy kiddies to go home.  With the room empty Camille and Freya walked around the room in circuits, holding hands with a balloon each in their right hand :-)  I can't speak highly enough of the entertainer that day, especially when at the end of the party she asked me to donate her fee to Camille's Appeal, an incredibly generous gesture.


Matt Horsup who had ran the London Marathon that day for Camille's Appeal turned up with his wife Zoe to pick up his little girls, Sophia and Nicole.  Matt had ran the race in 4 hours and has raised over £1,400 for the charity.  Another hero we can firmly add to our growing list.


We eventually got home on Sunday to a huge pile of presents and a very tired Camille.  In almost 10 months, I have never seen Camille so happy, so full of life.  She may not have any hair, she may have scars all over her head, her beautiful long eyelashes long gone and an NG tube in her nose  - yet she looked as beautiful as I have ever seen her. 


It was the perfect day.


So, here we are again.  It's a Wednesday and we are on day 2 of a 4/5 day chemo session.  There are no words to describe how monotonous these days are and sometimes how very sad they are too.  Each time I come here I seem to hear bad news involving patients I have come to know and become very fond of.


It is perhaps a little  'over the top' to suggest that life on C2 at Addenbrookes is akin to prison life.  Yet there are similarities.  It is a 12-14 hour day, with no shower, no tea-break, no lunch break, no dinner.  From the minute you wake up till the minute you go to bed you are restricted to a ward for which you need authorisation to enter and leave.  The playground has no sunlight at all, it is the hottest day of the year, yet I have no idea because you can not see any sky from these windows.  Camille can't play in the playground because all it consists of is a huge 10 ft climbing frame, which she can't use because she is attached to 4 pumps permanently (chemo, hydration, antibiotics and her feed).  I can't take her to get a coffee as children aren't allowed in the parents room, I can't take her to the concourse because she can't go off the ward when she is on chemo.


The nights can be worse than the days, not only do you have Camille's 4 pumps to deal with, but also those of your neighbours.  The beeps are endless 'bottle clamp', 'occlusion in line', 'end of feed' etc. etc.  each warning is met with the loudest beep.  I am awake most of the night, trying to find a nurse to end the relentless bleeping.  Camille's constant hydration also means she needs her nappy changed regularly during the night, at least once an hour. 


When you are so lethargic from lack of sleep it can be very difficult to keep a 3 year old entertained.  Towards the end of the day the frustration starts to rise and I find it hard not to get cross when Camille is still wide wake at 9pm and I just want to go and have something to eat and have an hour to relax.  Tonight I laid next to her huggling her back trying to get her to sleep as she sung 'Twinkle Twinkle little star' for what seemed like the 100th time.  As I began to tell her she needed to go to sleep Mummy was hungry etc etc, she put her arm up behind my ear the stroked my cheek.  I remembered once again why we are here and how the ridiculous things I have to put up with are nothing compared to the pain she has to endure. 


I pray with everything I have, that I never find myself in a time or place where I would give everything I have to be huggling her back, to feel her she stroking my cheek and singing 'twinkle twinkle' again.  These tender years are so precious, yet they are being stolen from us every minute of every day.  It seems we can never take anything for granted, for fear of what the future might hold. 


And so, I hand back over to Martin.  Business as usual.  Thanks for listening.  Over and out :0)