Who else can't sleep?

kmakm

Woken from my slumber at 7am by Child 4 needing me to stick five bandaids on her arm in order to cover minute spots that are apparently contagious, will spread over your entire body, including your eyes whereupon you will go blind...

GARGH!!!!!!

JJ70

kmakm are you on any oral estrogen blockers like tamoxifen? Or are your hot flushes chemo charged? Was at a support group on Monday where ladies were experimenting with various times of day/night to take tamoxifen.....just thought it might be a helpful idea if relevant to you. 

JJ70

Had a awake-asleep-awake-asleep-awake-asleep kinda night. Stayed in bed instead of getting up at about 3am and just rested there....did eventually fall back to sleep - (probably took over an hour) so it was a good choice for last night.

 My feet keeping me awake. SOOOOO F'n sore...hot, throbbing - not what you want your feet to be doing.

kmakm

@jj70 No hormone blocking pills yet. My turbo charged hot flushes are chemo induced. Was still menstruating in November. The average age for menopause in Australia is 51, which is my age. So my onc is testing all my oestrogen markers to decide if I go onto Tamoxifen or Anastrozole (after the big op). She's leaning towards the Anastrozole but only just. She even asked me which one I'd prefer! Geeze... I said you're the expert, you decide, I'm looking to maximise chances of long life.

And my feet do a bit of that hot throbby itchy stuff too. Irritating.

Sister

I managed until 2:30am this morning, tried to go back to sleep but now it's almost 4am so giving up.  Too much on my mind.  My father-in-law finally passed away on Tuesday evening so I've been trying to help but stay in the background a bit.  My husband ended up in an ambulance yesterday in pain with what they think may have been a kidney stone - time will tell.  My youngest (almost 12) proudly announces yesterday that she has made it into an event for the primary school State swimming championships (and she doesn't do squads like most of the others); she's so excited and remembers to bring me the permission slip just before bed.  Yep! sod's bloody law...it's on the same time and across town, as my next chemo treatment.  And because it's State's and only a couple of kids from her school go, there's no teacher or transport organised.  I feel my positivity gained on Saturday, slipping away.

kmakm

Oh @sister, what a load on your already full plate! First of all my condolences on your father-in-law. I realise that there is some relief and release at this moment but it's still hard on everyone. Your poor husband, the stress must be almost overwhelming. "Only time will tell" is a most awkward strategy, especially with a painful condition.

There must be some way to get your daughter to the swimming. With the parents of the other kids? Can you speak to the principal of the school? Is there a best friend of anyone in the family you could ask? The head of PE? Who has said 'if there's anything I can do to help'? Can you speak to someone organising the championships and say I can get her to the hospital but could you arrange transport from there? Play the cancer card! Could you even delay your chemo by an hour or two to deliver her? You've probably already thought of all these things but I feel your pain keenly on this one. Gargh!

I've been awake for an hour, cold, hot flush, cold, hot flush, worrying, worrying, thoughts swirling, feeling down. You've given me something else to think about Gaye, and I shall keep thinking on it... K xox

Sister

How are you feeling @kmakm?

Sister

I'm going over to the school this morning and see if there's any use there or maybe appeal to the district organiser.  I fully intend to wave the cancer flag.  My sister-in-law has used so much leave in caring for her Dad and, of course, my mother-in-law is struggling at the moment.  My last card is a recently retired friend who lives in the other direction and if all else fails, I'm hoping that she won't have anything already organised for that day.  I honestly didn't think my daughter would make it as far as State's this year as we've done almost no swimming due to me being sidelined and then to see the date it's on.

kmakm

Well since you ask @sister, rather nauseous so about to take a Pramin, and dreading the crash into the fatigue today. Cried myself to sleep round half past midnight. A self-pitying 'how is this my life' sob.

My youngest (my very difficult niece) is turning 10 on Monday and has very high expectations of the day. It will require a lot of effort and planning while I am lead limbed, horizontal and racked with bone ache. But nothing compared with your current dilemma.

kmakm

@sister What about a lateral thought? Is there a Rotary or Lion's Club that could help? Local cops or CFA?

Sister

Oh dear...10 is such a big number, isn't it?  I can even remember high expectations about 10.  And I can understand you wanting to get it right for her.  Can the other kids take some of the load of planning and effort - I can't remember how old you said they all are?
I get the crying - done a bit of it myself, lately.  I look back on the end of last year and how I felt completely fine and was running around organising everything and everybody - now some days I barely function.  I want my life back!  and I guess that's why we're doing this.

kmakm

Yes, the pulse is the thing eh? But such a difficult row to hoe right now.

I have 18yo son doing VCE, a 15yo daughter, and a 12yo. The latter is my nephew who does not like his sister at all. They are at each other's throats constantly. However I am reminding them all to get organised with cards & gifts so there will be excitement of some sort on the day. My daughter has already got her a present, bless her.

I have my niece's requested meal half organised. She loves my tuna pasta sauce and has requested it for Monday. Fortunately I have a big batch in the freezer. I just have to make a chocolate self-saucing pudding... If I am absolutely incapable my daughter will deputise, she likes to bake.

My poor niece barely remembers a time when her primary caregivers haven't had bresst cancer. Only 11 months with me, and six months with my 80+ parents after my sister died. We managed to hide my father's (so far successful) prostate cancer treatment from her and her brother. Poor little dot. She's an incredibly difficult child, but it's clear why she's that way.

Sister

Poor kid - I know you must want to give her as much stability as possible but it's so hard when you can barely drag yourself around.  My guess is that as long as she gets a big fuss made and the day is special with her favourites, you'll get by.  And as we say in our house: everyone cries on their birthday (or Christmas).  Maybe some signs up when she wakes up - ? is 10!  Or a special present under her pillow?  I know my girls both appreciated a little something that said they were starting to grow up (necklace or similar).

kmakm

I think what set me off last night was an email from my oncologist. I'd asked her what the results of the three oestrogen tests she ordered for last Saturday's blood test. She said they indicated I was "post menopausal at the moment". Even though I haven't had a period since November, and have massive hot flushes, it was still a confronting shock to see it in black and white.

And then:  

"I think its likely you will remain post menopausal (given your age)  but if we decide to start anastrozole then we'll have to keep a close eye on the FSH and oestrodiol for the next 12 months or so."

Oh joy... More unknowns. No wonder sleep eludes. 4 hours. Today will be hard.

kmakm

Nice pillow idea @sister. I'll see what I can come up with.