Saturday, 20 August 2011

MPs, PCTs and PALS

We arrived at Kathy and Roy's  to pick the girls up. We had already phoned them for the hospital and told them our news, and they were delighted. The girls had big beaming faces as not only had they had a nice day out with no expense spared, they also knew Ady's cancer was, as far as they could tell, contained.
We all talked about Medway and Maidstone and tried to work out what made someone think this was a good idea...where was the logic.
I said that if it had to be Medway, then the girls would have to have a week off school and I would have to take a week off work as it would be simply too stressful for me to try and fit it all in.
My week would consist of leaving the house at 7.30, dropping the girls to school, bathing my two elderly people, home by 10, sort stuff in the house, back out to do dinner lady duty at 11.15, do Brian's lunch, home at 2.30, pick the girls up at 3.15, over to Medway and arrive about 4.45, visit Ady, feed the kids at the restaurant there (what else can I do) and we would probably get home about 9 in the evening. I'm not sure when I will do Brian's evening visit.
Charlotte, however thinks that Medway would be a great idea, because she gets a week off school !! Steph, on the other hand, is horrified at the thought as she will be busy forming new friendships and settling in.

We thanked Kathy and Roy lots and lots, and went home. When we got there, Ady said that he felt like he had been hit by a baseball bat all over his body, and someone has suddenly pulled a plug and drained all his energy away. So he went upstairs for a lie down, and sleep.
Steph went off to sing some more songs (she is always singing, that girl!) and Charlotte went to her room to finish making head collars and rugs for her schleich collection.
I googled who our MP was (me and google are getting very close now) and started writing him a letter by email.
I spoke to our GP who hadn't heard about it but suggested I got onto the PCT, so I phoned them and they were a bit stuffy and passed me from pillar to post...that pissed me off, cos I was very polite and even put on a posh voice !!
So I phoned Medway PALS, who were busy but would get back to me withing 24 hours.....well that's too bloody long when you are on a mission, so I phoned Medway PALS and found myself a new friend called Bobby. She listened to all I had to say, all our concerns, confusion and anger, and said she would help us and do some digging.
She phoned back the next day to say she thought she had found the right person to speak to about this and suggested that I email her a letter with our concerns/complaint in bullet point fashion.
The girls were doing their own thing, and I set to my email. I was just organising in my brain, the correct words and the latest buzz words like continuity of care, patients charter, patients choice etc and there was a knock at the door. It was our friends Jackie and Robin with about half a dozen kids, turned up for a cup of tea as they were passing by.
I made them all drinks and sat Robin (he is a headmaster) at the computer and set him to work on my email. He did a great job, with correct spellings, punctuation and grammar (he has clearly had nothing to do with this blog then, I hear you say !!) and it gave me a good starting point to get the email done.
They haven't been back for coffee since...although they did say about going to theirs for a Chinese sometime.

Our MP was away for a few days and his secretary said he would get back to me in a few days and she would mark it as urgent. Maidstone PALS also rang back and said they would pass me onto Medway PALS and I had done the right thing by ringing Medway.
So all I could do now, was wait for people to get back to me.
Ady was still in bed, feeling very unwell, and coming downstairs occasionally to tell me how ill he felt and how worried he was that he couldn't work, and how worried he was about going to Medway. He wondered if he had a bug, and I wondered if everything is tumbling down around him and he is finally collapsing in a heap.
There is only so much one person can take,and I do think that two cancer diagnosis' within a year, is quite enough for anyone !!

I rang our GP and spoke to him about Ady as I was a bit worried about him, and didn't want him to be on a complete downer with the forthcoming operation, wherever it may be !!
Our GP ( this guy is brilliant, he has so much time for us, is completely understanding and does all he can to help) said to let Ady have some time on his own in bed with his own thoughts and if he is no better next week, then to bring him in to the surgery.

I had been invited to Faye's 50th birthday party at the weekend. I had planned to travel to Somerset on the Saturday, get rat arsed and come back on the Sunday. This had been planned for a few months and I was really looking forward to it.
As the weekend drew closer, Ady was getting a little bit better, but not much and although I really wanted to go to the party, I wasn't too sure that I should. I spoke to Faye and Mary, and we agreed that I would leave it until the last minute to decide if it was a good idea or not.
Saturday came, and Ady said that I could go if I wanted to, and that he would be OK. He said  that I may as well go as it will probably be the last time I can go away like this for a while and he didn't want me to hold it against him in the future. Well, by him saying this, I knew that he didn't really want me to go. I left it for an hour or so, and then said that I had decided that I was not going. It was not the right time and Ady and the girls needed me at home. I couldn't leave him to look after the girls in that state on his own.
I had made the right decision, as Ady looked very relieved and relaxed a bit. Charlotte said quietly to me later that she was glad I wasn't going as she would have felt that she had to be 'mum' and look after things.
Christ, that is NOT what I want for my children.
I am really really proud of them and the way they are handling this whole sorry situation.
We all talk very openly about our cancer, they ask all sorts of questions when they need. They cry and we all cry together and they laugh and we all laugh together.
This is not just Ady's cancer alone, it is our cancer, we are ALL affected by it, we are a family and we do things together.

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