Wednesday, 29 June 2011

A few days in

I am feeling pretty good.  The drains are really uncomfortable but nothing that taking it easy and regular paracetamol can't handle.  I had one drain removed yesterday and much to my disappointment I have started to develop a small collection of fluid under the scar on my left side - a seroma - after it was taken out.  Not a big deal in itself unless it gets really big or painful and then I have to go and get it drained, but complications are not something I want to be managing.  On the gross side the drain went right across to the middle of my chest and coiled around a bit, it was about 25cm long and I could feel it sliding out from under my skin as she pulled it out - pretty disgusting but kind of cool!

Every morning Raife asks me for a breastfeed still.  I blink back tears and explain to him again about having my breasts removed.  To which he inevitably replies "can I see where your breasts were chopped off?"  Very very cute.  Bastian is coming to terms with the bottle and most of the time accepts it.  His little ritual has become - sit on Mum's legs (I can't pick him up)
             - push the bottle away twice and complain
             - try to nuzzle into my chest while grabbing the bottle and dragging it in
             - spit out the teat, complain again
             - take the bottle and feed until he's had enough :-)
He seems to do this every time except for in the middle of the night, when he's all over the place.  Sometimes he just takes it, no questions and sometimes he cries because he wants the breast.  Both break my heart.

He is eating heaps more food which is relieving.  Having his little cousin here who is 2 weeks younger and eats heaps has made a real impact.  He tries to take everything off her and stuffs it in his mouth as fast as he can - which upsets her to the point she was trying to get away from him every time she ate!  Also very cute.

The biggest thing is that I don't feel different.  Somehow I thought I would.  I wasn't sure how I would feel, I just expected to feel different.  And I didn't realize until afterwards that part of my fear was that the kids would feel differently about me because I had changed.  And of course they don't.  It is such a relief.  There are stretches of the day where I even forget that this has happened, until I look down and remember.

The most limiting thing is that I don't have a lot of movement in my arms.  I cannot lift my elbows to shoulder height, or really extend my arms.  And I cannot weight bear at all. I can feel it all pulling inside my armpits, and occasionally there is a burning if I overdo it.  This means I can't pick up Bastian or anyone else which is gutting, but on the up I'm not allowed to do the washing or vacuum either :-)  Sometimes I can't even open the fridge because the suction is too much, and closing the car door after i get in is impossible.  I also have to wear button front tops (checkered farmers shirts I have) as putting my hands and arms up that high is not happening.  It will all get better as the healing comes along.

I started IV vitamin C on Tuesday, and it was not a problem at all.  So every Tues and Friday until chemo starts I'll be going in for that.  I was pretty wiped but I think it was more to do with going to the health shop, the bathroom shop, the distric nurses office twice and lunch at the cafe that did it.  And I keep brain farting - love the general anaesthetic!  I'm also looking at 'circulating tumor cell' testing, but I need to convince the oncologist first.  I have a bone scan tomorrow so fingers crossed for that one, and as yet no results from histology for the lymph nodes  - although the surgeon expects that at least half of them will be affected.  I pray she's wrong.

While I was there I had a few fantastic visitors.  One who is travelling this same path as me but chemo first.  It is such a relief to know that it works.  I really worry about trashing my body for no good reason but to see her looking so well and proof that chemo is effective was such a good feeling. 

Thank-you so much to all the donors - you are making such a huge difference to a little boys life (and his Mummy's), you cannot believe what an impact you have had on this whole experience.  We are forever grateful.


  1. Still thinking about ya & sending you good vibes & all that. Thank you for sharing your journey. I wasn't able to leave a comment a few days ago, but I wanted you to know that I think you are such an amazing, awesome, rockin' warrior woman for having posted the post-op picture.

    Kia Kaha!

  2. Kris Gallagher1 July 2011 at 18:23

    Hey Jaynie.. dont know if you remember me but I was at the Rectory with you all those years ago...Kristine Gallagher. I saw your link through facebook and have been reading through your blog. I hav to admit it has made me cry reading your journey but remember the type of amazing woman you are and know that your charisma, guts and determination will always get you through. I just wanted to post and say you are in my thoughts and my heart, I wish you and your family every love and star in the universe. Big hugs your way xxxxx