Friday, 14 September 2012

Snotty nose

Jaydens woken up today with a very snotty nose. His temp is slightly up and he's miserable. He's really hating the catheter in which I'm not surprised about. I wasn't here yesterday when they put it in as Danny was. I'm so glad I wasn't though as apparently they had to have three goes at it before it went in correctly. Poor little mite.

I asked Danny to be there this time as I found it so traumatic last time and I'm not sure me being stressed out next to jayden is what he needs to be feeling when he's already stressed out. Danny is much better at keeping it together. He's just better at keeping it together all round really, he never falls apart and just manages. I truly don't know how he does it but I guess at least one of us needs to be able to do that.

I'm sitting next to my little boy now as he plays with his garage and cars and watching tv.
When he woke this morning he said I'm sick mum, referring to his awful cold and I thought to myself, if only. If only that's all that was wrong. If only that's all I had to worry about was my boy and a wee cold. Now I even panic when my daughter or other son complains of anything aching, and i constantly look for signs of something more sinister. When cancer enters your life it becomes a very real thing that exists and not something you just read about or hear about. It becomes something you now KNOW can happen and I'm constantly worried about it effecting my other children or myself or Danny.

My sister is staying with us at the moment which has been brilliant, having family around is so comforting. I think after my mum passed away we all kind of went our separate ways in some way and although were always still in contact, it was different. Now with everything happening to our family i feel closer and more connected to my siblings than any other time. The sense of need to have them near now has never been more necessary.

Its midday now and not long before they start the next lot of chemo. Danny and the kids are coming in soon so Jayden will no doubt pick up. He's a little low at the moment. I really think he gets quite depressed when he's in here.

I spoke to a good friend today on the phone and haven't done in so long. I think people have taken my blogs quite literally and somewhere along the line I must have implied to stay away. As that is what everyone has done. It's kind to give me space and I have needed that but the messages I get in this blog, via emails and a text mean so much. They help me get through the day knowing someone is thinking of us.

My closest friends I don't hear from and I know it's just they are trying to do the right thing. I don't know what the right thing is so there's no way they would know.
Its such a Difficult situation where somedays I'm so angry with the world that I don't want to speak to anyone and other days I'm so lonely I wish someone was around. I feel stupid reaching out as I don't want to make people uncomfortable but am no doubt stupid for not.

When I do see people I know I've found myself learning the 'knack' of asking people about their lives now instead of talking about mine because it's almost impossible without crying and I know that makes people uncomfortable and me feel like crap. My beautiful friend from Melbourne taught me that and it works a treat. Means I can actually have a conversation and manage to blend back into society without falling in a complete heap.

Jaydens watching ice age at the moment on his DVD player. He's gone from cars to dinosaurs and has watched this DVD now at least twenty times. At least the movies he likes are good ones as I don't mind watching it over an over again either.

We have had to do the dreaded six hourly baths again with this grueling chemo and that's been driving him nuts. It's difficult to bath a child with tubes attached everywhere AND a catheter and he hates it. Last night fortunately the nurse we had let me just wipe him down instead of putting him in the bath. I love her, very nice lady.

I'm home tonight and danny is staying but I'll be back tomorrow for the next three nights. I hate not being here with him but know I need to spend time with Layla and Luke. Being torn between them is one of the hardest things about this journey. Not having us all together is truly awful.

I so hope he does well this round and we can come home next week. His cold is worrying me though as when his counts drop anything could happen. I was told today by the nurse he may need oxygen and that was scary. Everything about this is scary.
One day at a time, I know. The best advice s wonderful man we met through this named Simon told me once. He's so right. I wish I could actually do that and some days I pull it off. Others I can't help but worry about the future and what it holds for my precious son. It's those days I ache like no other, find it difficult to breath and just want to cry.


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