Monday, 15 October 2012

Major headache

I saw a doctor today for myself because I have a headache that just won't go away. Whether its stress related or not I don't know but am guessing it probably is. My inability to breath lately and the feeling of being in a panic attack 24 seven is truly a nightmare as well and thought it best I finally see someone. He got me to do a bunch of blood tests, finger prick test and the usual obs and all I could think about was Jayden. All the times he's been finger pricked, bloods taken, obs etc. it's insane to take it all in really, how very much he has been through. I hate it. I was so sad by the time I left the surgery and had a big cry on the way home. I feel so damn exhausted most of the time.

Jayden however has had a great day today and over the past few days he has slowly been eating small bits of food. Today for the first day he ate more than just Weeney mouthfuls. Amazing. A few bites of a banana, half glass of milk, and even a minuscule bite of a muffin I made( looked like a mouse bit it) but still, it was a bite all the same.
I had a check list I wanted him to have completed before we even considered doing round three and he had not even come close to checking any of the boxes until today. He woke up sprightly, has been playing happily with the kids all day and eaten. No sign of any lung problem anymore ( although I'd like to see an X-ray first). He's eaten food-amazing! And he looks the best he has looked in ages. Of course that's not my check list but if I judged him by his appearance and manner today, he looks well and could well check those boxes. Then I thought, maybe I need a new check list?

I have to say I switch from one day to the next, in fact one moment to the next. My biggest struggle is living with what decision we make which although we feel we have made it I still want to feel 100%. Although I'm beginning to think that may never be possible.
Nick rang today after I emailed him to talk to him and I think I had the best discussion with him that I have ever had. He was really understanding and compassionate and probably made the whole thing even more confusing but for the first time, I felt really heard.
I'm rambling now I know, it's late, I'm tired. And I'm trying to get the days events out in some kind of order and make some kind of sense even though my head does not feel that way at all.
I sat out the front with my daughter today and we spoke about the decision. She said to me, " mum, you just need to focus on making the decision, stop looking into the future and worrying about that. Make the decision, and never look into the future". That's my 10 year old daughter? Where did my little girl go? I couldn't believe those words came out of her mouth, she is truly Amazing, i love her to bits. She has been so amazing through this whole journey and she didn't have to be, she just is. And She is right I know. She also doesn't want us to do it because she hates us not being at home. We all do.

I can't help but think will this round give him a better chance? No one knows that of course. And should we get him to fight it as far as he can? My gut says no because I'm his mum and don't want him in anymore pain especially if no one knows it's worth it. I spoke to a dear friend of mine today who is also fighting cancer and has done for a while and she said " you forget about the pain, and I would keep going no matter what if it means I can spend more time with my family". I sat there and thought, " I wonder if that's what jayden would say if he could? Because at the end of the day, some of us are fighters and some of us aren't. She is. Is he? Would he want to fight no matter what to get the possibility of more time? Can he? Does his wee little body want to? Will it in fact give him more time? I wish I knew.

I don't know. I don't know the answers, none of them and no one can tell me. One day I think i know what to do, the next day I'm not sure. Im so tired. I wish I had a crystal ball.
I need to sleep, give my little man a big squeeze. I want to hold him forever and never, ever let him go. I wish I knew how to make that possible.


  1. I hope your tests come back clear. I think a lot of the time Mums get forgotten in this journey. We become run down and it's not how we need to be to look after our kids.
    Mums need to be healthy too.
    Take care and I hope you get some resolution soon.

  2. To such a totally shit decision you have to make Leisl. The turmoil you are in is clear to read. Nothing I can say, but I am thinking of you. Catherine