Tamoxigang thread 50 with summer sun, sangria and maybe even some sand

[foofooyeah]

Welcome to thread 50 .... Yes FIFTY.
Lots of us are rising 50 so rather apt!

Aw, happy first birthday to babybarra!!

Happy birthday babybarra
It's very quiet on here, is that a good thing in that everyone's ok ? Hope so

Happy birthday babybarra.

Have just come back from line care but also got caught by genetics doctor. Had letter earlier in week to say have tested positive for BRAC1 gene. They have retested my mums sample as hers was fine but with a different test ( only just available) is now positive. Now am sat here wondering if I had known 9 years ago when hers was done whether I wouldn't be doing all this now. At least my sisters will get tested now and can make decisions. Thank goodness the doctor asked for a retest. I know the original test is very accurate. Maybe #amber# or someone would know if this has a major impact on my prognosis?? Ovaries will come out now as well. Feel a bit crappy really, although that could still be docetaxol.

Hope everyone all ok

Managed to not put ambers name in bold- wrong button!

Oh penguin, I feel for you. I'm BRCA2 positive (my dad's side). My sister is too, she's about to have a prophylactic mastectomy. I'm waiting to get the ovaries out too. My dad feels terribly guilty but it's really not his fault - he's a GP so feels he should have thought about it, but apart from my gran, there's no other family history.
Do you have much family history?

speedy BRCA1 doesn't change the odds, with the modern treatments. It's info for the team so they tailor what they do and when. If that helps.

Thanks wee and amber.

The history is on my mum's side which was why it was a surprise at the time that there was no gene link. Am a bit relieved that it isn't on my dad's side as he would feel responsible, even if we kept telling him otherwise. My mum had been checked every year for breast cancer but it ended up being ovarian cancer that appeared, and caught too late unfortunately.

I always had the plan that I wanted a BMX and ovaries out so I guess it doesn't change that much in the scheme of things, just keep thinking 'what if'.

Hello all! Sorry I have been very quiet. I am doing much better. The nausea seemed to eventually settle and has been gone for the last few days. I have been a little tired & fatigued if I tried to do too much but otherwise I feel great and today was my first day of feeling 100% like 'me'.

Today is day 10 and I started losing hair though...my head hair seems intact but everything...er...south of the border is rapidly departing, as well as my eyelashes? (which just feels weird..) my scalp is very sensitive, so maybe it will also start falling out soon.

I feel pretty much as full of energy as I normally do and am itching to go for a run, however this week I know that the immune system is low and I need to be extra cautious. Does anyone know if I will do damage by attempting a short, easy run or should I wait until next week?

Hope everyone else ok, will go back and read the rest of the thread that I missed!

I think you should go for a run if you feel up to it Briteside. You are not going to be exposed to too many more pathogens. Just take it easy as you may be short of red blood cells too..

I have just finished knitting a new hat pattern which would be perfect for someone loosing their hair. It is on Ravelry called Ana and it is a loose bandana type of hat with a clever gather at the back. I made it up in a silk /cashmere mix and it is beautifully soft and warm and quite flattering. I may make one up for a friend who has just been diagnosed.

Hi all
Looks like I'm stepping back on the roller coaster for a while.

I've just had my first annual mammo of my remaining breast following a mx for DCIS in October last year. My lovely breast nurse told me yesterday that it's come back showing a focus of microcalcification so I'm booked in for biopsies on the 2nd of Sept which is the day after I get back from a week's holiday in Turkey. I'm provisionally booked for uplift surgery on that breast on Sept 16th but I guess that might become something else now.

I'm also awaiting ct scan results of my abdomen as an ovarian cyst was found on ultrasound and my ca125 blood test came back 'marginally high'.

So could all be something or nothing but feels a bit dismal right now....

Not really in a holiday mood

That's a bit rubbish marshy. Hopefully it will all be fine and am keeping fingers crossed for you. My ca125 levels are normally quite high anyway as I found out during a trial screening programme so hopefully those levels are normal for you.

Hope you have a really nice holiday and can try and forget about it for a bit, but I know that's easier said than done.

My spirit is absolutely broken today. My husband has started making a memory box for the kids. He really does seem to think the end result is a forgone conclusion. I don't know if I can keep any hope if he doesn't feel it too. The doctors have always seemed positive to me, in spite of the negative situation. I just wonder if he's been having different conversations with the doctors. He likes to ask lots of questions and sometimes I'm not present in the room (my choice). Perhaps I'm just being hopelessly naive in thinking that something, one day, might come along and give me a chance? I know there's some really good treatments out there now but they don't work for everyone.

I've been sobbing all over my MIL all morning.

Becca didn't want to read and run. So sorry you are feeling like this today. Surely the doctors would not be positive with you if there was no chance of being positive? I don't think you are being naive at all. Maybe this is something your husband wants to do to have some control/ feels he is doing something? My friends husband has taken to really focussing on diet as that is something he can 'do'.
Sending a really big hug.

Becca - hug for you.

I have only ever had worse case scenario from doctors and pretty much a complete absence of reassurance without hard evidence in front of them so if you are getting positives from them I think that is definitely a good thing.

Speedy - thanks for your kind words

Becca, you must be in pieces. Anyone would be.
I have done the memory box thing for my kids. It was something I needed to tick off on my mental list. I haven't looked at it or thought about it since last Christmas! I videoed myself singing their favourite nursery rhymes and worked myself up into a truly victorian state of tragic heroine. It was ridiculous.
Then I shut the box and got on with living my life.
None of us know what will happen in the future. We can only live one day at a time.

Bg hugs Becca have you spoken to him and told him how he's making you feel ? I'm sure that he feels he's doing the right thing but it's not helpful or what you need right now.

Marshy hugs for you too, I'm sorry you're in limbo. Hopefully will turn out to be nothing. I hope you can still have a good holiday

Good gracious me, Becca, words fail! Quite frankly I am appalled at him. Glory be, whatever else is he going to do? Have the Undertaker nip round and measure you up during dinner?! Blimey, you are right at the point where teams are pretty confident that they can put Stage IV melanoma 'on hold' and stop it killing folks (in the great majority of cases) so the odds have never looked better.
I think he a) needs to get a grip and b) needs to offer you a very big apology.
If you wanted to do your own stuff, that's fair enough if it helps you personally. But assuming you are going to cop it any moment is just plain inappropriate.
Large hug of unmumsnetty sort of you.

I really think he thinks I'll have popped my clogs by this time next year He did apologise for upsetting me but I think he still stands by what he's doing. "Preparing for the worst. Hoping for the best." were his exact words. I just want him to hug me and tell me everything will be ok. I KNOW it might not be, I'm not that stupid, but we can't just give up.

Amber your posts always fill me with hope

I'm going to go and squidge my baby boy's chubby, chubby thighs. That always make me feel better

Oh marshy that is bloody pants that is ..... Am sure it will all be ok, but to go through the worry etc is just horrid.

becca my other half started saying "what will I do at Christmas " fecking loon. I just said same as we always do, I will still be here.
They are idiots sometimes but it is that they are scared and feel hopeless.

Oh, and ad 4 sessions of radiotherapy so day, radio team are nutters! It's been a laugh. I move to a different unit nearer home next week but doubt they will be singing Dolly Parton songs with me!

Oh yes, Foofoo, I was really cross when I got Elton John during rads - I'm not an Elton fan, but try to stay still...

beccajoh, do make sure your current oncology team have seen www.practiceupdate.com/news/5402 where 8 out of 10 people are alive and pretty well for the two years so far (at your stage). That team will be looking to do a stage 2 trial and looking for participants, I think.

Hi all
Thanks for the welcome back and kind words.

Becca i hope you're feeling a bit better today after lots of thigh squidging and amber info

Yes it is really pants foofoo but I'm remaining mostly optimistic and at least it's not such a massive shock as last time as I have more of an idea as to what might lie ahead of me. One way or another i will be having more surgery and in some ways I'd be happy if that turned out to be a mastectomy. The ovary thing.....who knows but trying to reassure myself that BCN said she thought probably not sinister.

Setting off for the airport in a bit so see you all on my return.

Hello All, been busy with mum and chemo no. 4 so not had time to catch up with you all, although has been quiet on here this week so here's hoping that we are all out there having a life. Been over 5 weeks for my mum now and the last week has suddenly seen some improvement in speech, reading, mood and even a tiny bit of RHS movement. I have no doubts that things are going to be tough when she comes home for quite a while but really encouraging. Chemo no. 4 seems to have entailed an extra day of crappiness this time round which was unexpected and unpleasant. Usually feel almost human on day 6, but seems to be dragging on a bit this time. Possibly because the treatment was delayed by 5 hours due to admin cocks-ups, so I should expect to be 5 hours later recovering. Luckily, I have been bringing my chemo sessions forward by a day each cycle, as I originally would have had a performance (amateur dramatics) on day 6 of this cycle - that would have been very tough feeling like I do today. Got another 2 days to recover and hopefully will be fine.
Belated happy birthdays to malt and babybarra.
Two things becca, your husband is an insensitive oaf, but he is probably handling things the best he can. The control element rang bells with me. There is nothing else he has control if and so he is hanging in to one thing he can get stuck in with. I hope you are not letting it upset you too much. Can't imagine allowing anyone else to talk to my medical team without me, I'm far too paranoid, would be reading sub text into everything they said. The other thing was about diets - I keep being sent diet books from well meaning friends, as others have said, the chemo team are only worried about maintaining a healthy weight, and my nurse suggested the odd glass of wine or two without prompting.
speedy I'm hoping the chickenpox scare came to nothing. I've had a number of worried phone calls from friends where I have visited and then someone has been ill and they have worried about passing something on. Been lucky and healthy so far - perhaps, I'm the carrier!
briteside firstly, massive respect on even thinking about a run. I was diagnosed on March 3rd and I think the last exercise I did was march 2nd. Really need to rectify that sometime, looking forward to treating myself to a health club membership at Christmas (when I can swim again). About the hair down (ahem) south. That was first for me to go as well at about day 10, although it has now stopped and I have been left with side burns similar to the wurzels (see previous posts). Hair started going very soon afterwards, so you maybe in the middle of that. I took the decision to have it shaved off and donated to charity as soon as it was obviously on its way. What ever works for you. Not a pleasant time and I am thinking of you.
marshy hope you manage to enjoy your holiday despite the tests hanging over you.
Hello to everyone else, hope you are all enjoying the bank holiday weekend.