Sunday, 31 July 2011

Things I wasn't expecting

I thought I'd throw up a list of things that I didn't really consider regarding the surgery and the experience so far - it might help make life easier for someone else one day... *Your breasts keep you suprisingly warm, I have been really noticing the cold and having to wear way more layers than ususal
*You don't ever get nipple freeze :-)
*You cannot get your elbow level with your shoulder or straighten your arm for a few weeks
*You have to wear checkered farm shirts everywhere for about 4 weeks because you have to wear tops that open at the front - you can't get your arms close enough to your head - and that seems to be all there is!
*You can't lift anything. Even a 1.5l bottle is too heavy by the end of the day.
*You sometimes can't open the fridge
* I couldn't reach the shower taps to turn it on, or even the soap dish (both about chest height)
*Hopefully your toilet paper is next to you and not slightly behind as you can't put your arms back like that - wiping your bum can be tricky too...
*You can't get dressed or undressed, have a shower, wash 3/4 of yourself or walk too far by yourself for a few days - longer for the showering and dressing. I can only just get tops on and off over my head by myself now.
*You can't lift your kids, or cuddle them close, or even have them on your lap - one little bump is excruciating in the first few days
*Morphine makes you feel nauseous
*Anti-nausea meds don't always work
*Morphine still makes you nauseous
*Different meds make you feel no nausea but morphine makes you tired and dopey so when visitors come you are very very boring.......
*Hospital food can make you more nauseous than the morphine
*Hell's Pizza will deliver if you ask them :-)
*You can't sleep because being comfortable is impossible.  You have a drain for each breast and another one for your lymph nodes, so each one is a big long tube - about a metre and a half long - that is joined to a litre bottle at one end and you at the other, but luckily they give you a black fabric shopping bag to carry it all in when you go to the loo...(you can fit your catheter bag in there too when you go for your first shower) you will probably go home with them still in.
*Lying down flat is hard because the drains are just far enough around that you lie on both of them just a wee bit, and you can't lie on your side, let alone roll over.
*Kids think hopsital is really really really boring until they bring you the big 1950's orphanage cot for the baby, and the kids love pretending they're at the zoo
*You can't make a cup of tea without help at home
*Going to playcentre is a definate no-no for at least a month - way too tiring
*People make you so much food it's incredible, and delicious
*Kids think your drains are amazing and want to see them all the time
*DON'T get a seroma
*Vitamin C is really good, but having holes poked into you twice a week is not
*Haematoma's hurt more than mastectomys
*Morphine doesn't always work that well for haematomas
*More morphine works great :-)
*Get a physio who knows about mastectomy
*The right surgeon makes all the difference
*The wrong oncologist needs a different job...
*Smoking weed and drinking your own wee is not as likely to cure you as some would have you believe...
*You get used to feeling really useless, and just when you start to relax into letting visitors do eveything for you they all go home and you have to do it all yourself - this is really dumb!
*There is never a minute where you are not thinking about cancer, surgery, your old boobs, your sore arms, the upcoming 50 thousand hospital trips, the suck oncologist, the million other tests you should/shouldn't do, the trillion vitamins you 'need' to take, the weird person who sent you a message about smoking weed (what if it does work?!), how much your husband does with the kids - geez he's awesome, the itchy patch on your side that the stickyplaster is irritating, the seroma you are developing, the seroma you are imagining developing, the headache than means you probably have it in your brain, it prob won't matter if it's in your brain because having three general anaesthetics in seven weeks will fry it anyway, how long it's been since you shaved your legs or underarms, the crap you are about to pump into your body to fix something that might (or might not) be there, how cold it is without breasts, how friggin' freezing it's going to be without hair, what shape will your head be under there anyway, whether you should get a Jerry Hall blonde or a Scary Spice afro wig, how wonderful yur husband is and how tired you seem to be (but maybe that's three little boys!). But most of all I think about when the next lot of breastmilk is coming and how much will it be.

Somewhere in there I manage to find space to throw out thanks to all the wonderful people who do so much for us.  The people who make us meals, who bring us fruit, who send us fantastic handmade gifts that really make our day when they come, who send us lovely special soap, who look after our boys when we call them without notice, who insist we stay for tea when we just dropped in for a visit, who travel for hours just to see us and tell us they love us, who sit with me for hours in Vitamin C, who are patient with our mingy veins when we're doing vit c, who pay for all our tests and costs without even blinking, and all those incredible women who give us their milk.  Every single one of you has made a difference in the long hard road that is and will be our experience. So I find space in amongst all the crap inside my head for you all :-)

Man, it makes me tired just thinking of all this............ ;-)


  1. Vanessa Jackson1 August 2011 at 08:02

    Such a well written blog Jaynie, you have such strength and clarity, I hope all goes well with your treatment plan. Glad to hear Daniel is such a great support to you, best wishes for all the family, take care.

  2. So wait - you have to smoke weed then drink your wee? Is that so that you get the most amount of THC possible in your body? I guess everyone has a cure huh! Was really good to see you today lovey, we miss your smiley face at Playcentre!

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