Anti-werewolf pep talk?

[Deleted User]

@CellyK I was on Tamoxifen for 1 year. I didn't have many symptoms, but it can cause endometrial hyperplasia (pre-cancerous/ cancerous changes). It happened to me. Best of luck with your treatment. 

CellyK

@Romla Hi there!  So - it's 3 weeks today that I've been on Tamoxifen.  The advice I got on this forum was really helpful.  I got a non-generic brand, and have taken it late night, before bed (also the easiest time to remember).  It's been fine.

At first a few cramps as though I was going to have an early period, but then nothing.  Period still hasn't shown up - looks like I might skip it.  Whoo hoo!  Another bonus is I haven't had even a shadow of a migraine (hope I'm not speaking too soon!) - which is quite unusual.  Would be crazy if Tamoxifen actually stopped them!  Early days - we'll see.

Downsides - but really minor, are drier scalp & hair.  But overall my skin is no drier than usual, so that's weird. A few 'warm' flushes at about 4 am, but getting up for a large, cold glass of water does the trick.  I expected to need to get up for a pee in like an hour - but no!  I seem to sleep well after that.  Maybe I need to hydrate more during the day.

My brain is 'all over the place' - but I put that more down to delayed shock than hormones (or maybe it's both?).  I have literally let go of the idea of having a reliable memory at the moment.  I just use lots of post-it notes (everywhere!) and electronic reminders.  I can't blame chemo brain, because didn't have chemo.  A counsellor says it's my brain telling me it needs a break from solving problems and just dealing with major shiz.  

It sounds like your brain is pretty exhausted too!  And quite understandable.  I hope you get a chance to have breathing space.  I'm reserving blocks of time in my diary for 'mental recovery' time (like bush walks, reading or drawing - or having a facial!).  Otherwise it will seem like a good idea - that I never get around to.  

[Deleted User]

Good to hear @CellyK. Just keep an eye on the hidden effects. 

CellyK

@LucyE That sounds rather mysterious - how can I keep an eye on them if they're hidden?  Lol.  Do you have any in mind?  

[Deleted User]

Just have regular check ups with your gynaecologist. Wasn't trying to be mysterious, sorry. The changes are hidden. That's why they are so scary. Just don't want another woman to be in the same boat I'm in now. Good luck with everything. I shouldn't have commented. 

CellyK

@LucyE - Ah yes, I just saw one of your previous posts where you mention the endometrial hyperplasia.  My surgeon was straightforward about the increased risk of uterine cancer - but put it in perspective.  Although it happened to you, it's super rare.  
I told her about my cramps, but she said they'd probably settle - and they did.  We have follow up scans planned (just in general - not because of cramps). 
I hope you got the support and treatment you needed with the pre-cancerous changes you experienced.  That would have been a scary downer.  It sounds like they picked it up early.   Are you okay now?  I take it you had to change therapies?

[Deleted User]

Thanks @CellyK, I shouldn't scare women with my story. I'm doing ok. I've tried to stay off this network because I'm at the point where I don't have much that's positive to contribute. You are doing really well and that's what it's all about - staying well and focusing on the positives. I'm just waiting on some tests so I'm probably a bit down. I know a lot of women take Tamoxifen for a long time and do well. I'm really sorry if I worried you. x

Romla

It's ok@LucyE you are among friends please don't ever think you can't come on if you're down - that's probably when you need us most . What's good is sharing problems maybe even coming up with some ideas to help - it makes things a lot easier . You are always welcome. XO

Romla

Everyone of us gets down and we all worry - you are not alone - probably what's good is we can say things here and get a hearing that we may not be able to elsewhere

iserbrown

@LucyE
Please don't feel isolated and that you think you are scaring us with your story.
We all have a story to tell. Some more involved than others.
For me I have thickening of the endometrial lining.  Tamoxifen induced. I'm under a Gynecology oncologist and being monitored. 
For all of us it's awareness and what to look for.
I hope treatment is being kind to you. Take care x

CellyK

@LucyE No probs.  Your just being honest.  If I want to worry about something - literally there are hundreds of things to choose from, quite aside from cancer, there's weird, fat little men trying to blow up the world and - maybe climate change will get us first - if the Caribbean is anything to go by!  
But seriously, waiting for tests - is the worst - especially over a weekend (all my first tests seemed to be done that way!).  Don't feel that you must be cheerful - or not be on here.  There are plenty of ladies that have rants on here and nobody judges them, because sometimes that's just what we need to do.  

The BIG challenge with breast cancer is living with the unknown.  I don't know for sure if I really am okay (my surgeon would slap me for saying that) but it's true.  I don't know what will happen, whether I'll stay clear for 3 months, 3 years or 30 years. None of us know that for sure.  
I've decided I won't try and be 'fear free' - I'll let it be - but not let it tell me what to do.  The fear is a handy 'but-kicker' that reminds me to focus on what is really important - and on what I really need.  It will also get me outside exercising when I don't feel like it.  So it has benefits.  Maybe some people don't need that motivation - I do!  
I can't fix anything for you our even help you feel better.  I just hope that by relating - where I can - you feel a bit less alone.  XXOO take care of yourself and enjoy the much improved weather tomorrow!  

[Deleted User]

Thanks so much @iserbrown and @Romla, I appreciate your kind words. I just realised that the death of Connie from Love your sister has made me feel quite low tonight. @iserbrown I hope your treatment is going well. @Romla I'm having a bit of a cry as I type this, but I feel better. x 

iserbrown

You're welcome!  Please keep engaging with us. The news of Connie is extremely sad. She certainly raised the awareness. I know I have been teary reading her story. Once again this week I have a funeral to attend; another cancer victim. Reading the obituaries sent me into teary mode. It's a so and so that is hard to accept. 
Take care x

[Deleted User]

I'm sorry to hear of your loss @iserbrown. You take care too. x