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!

[Lilymaid]

Buns
"Those if you who suffered from neuropathy, did you also found that all of your skin felt a bit odd, particularly nods and face. Slightly numb but also all clothes feel a bit damp, when they aren't "
No just the ends of toes and fingers for me, fortunately! I just looked at the article on NHS Choices about it and it mentioned gangrene (AARGH!) as well as some rather vague stuff that might be more relevant to you.

[mrsrhodgilbert]

I struggle with all the conflicting advice. I was given tamoxifen a few weeks after surgery and was taking it before my rads started. I take it with breakfast. I had some hot flushes for the first couple if weeks back in June but they stopped quickly. I get the occasional one now, but I can usually put that down to something else, rushing round, being somewhere hot, alcohol. I haven't had any other issues with it.

Speedy, hope it goes well today.

Elporto, hope you're managing to fit in lots of activities befor your second dose.

Marshy, are you ok?

Becca, how frustrating for you but good news about the new drugs.

Waves to every one else.

Dd2 turned 18 yesterday. Last weeks 21st celebrations are now over, we have replaced 21st cards with 18th ones and after a party with friends at home last night she is going to hit the town tonight. DH and I get to take her out on Friday, we know our place!

[Marshy]

Hello everyone
just to say thanks for all the sensible and kind comments following my last post. I am hanging on in there by my finger tips and have stepped away from Google today. Wish I could stop feeling so scared. Feeling upset that my life is on hold around this horrible disease. We were planning to visit dd in Marrakesh early next month but that problem won't happen now. And how on earth am I going to tell her what's happening when she's so far away? Really missing her...
Sorry to be such a misery - just can't get my chin up at the moment
Bye for now

[Marshy]

Probably not problem......

[MarthaCostello]

PS this is RahRahRasputin, just a namechange

[MarthaCostello]

Marshy I don't know what to say, but I'm so sorry. I understand the "on hold" feeling. It is frustrating. Whatever is to come, you will get through it. Have your team explicitly said that treatment will begin before your planned trip? Otherwise they may allow you to delay slightly, obviously within whatever safety guidelines they have. You might have time to get there and explain to her what is going on. If not, is she there a while? Maybe you could visit later.

Sorry, I might be be being completely unhelpful! I'm sending you lots of love and good wishes

[Marshy]

Rah rah! Martha hello!
Thanks for your reply. I don't have a treatment plan yet as full results aren't in but it's looking like chemo might be on the cards when I thought I would be back at work in 4 weeks time having recovered from mx for dcis. I am struggling to readjust my boundaries and take on board the new reality especially as I don't actually know what it is.
I've been thinking about things and maybe we could go and see dd before the start of what ever comes next. Dd is back in December. Thanks for your support. Feeling slightly more optimistic

[foofooyeah]

marshy I had this idea that I would be off for a month or two when first diagnosed! 14 months later ......
Actually I saw the senior manager today at work who authorised that I was paid for months longer than they normally do, and I gave him a big kiss!

[amberlight]

Marshy, if it helps at all, with it being tiny bits and nothing in the nodes, and with the latest modern treatment stuff, your chances of being doomed are 1%. Which is about the same chance of being doomed from any other random thing. Unlucky for the person who gets to be the 1%. But they are normally people who are already very ill or very elderly or both.
It's very natural to feel eek. I still do every time I have a checkup coming up (er, next week) but other than really really annoying treatment, you should be still here for years and years and years. Have a large

[Marshy]

Thanks amber. You are such a comfort. I think it has been the whole her2 thing which has really freaked me out though I don't know for sure that it is that. Whilst trying to avoid the horror storied on google, I've found some info on treatment recommendations for what looks like my probable profile and it looks doable with very good success rates. I might come back to you about that, if that's ok, once I know for sure? Positive vibes your way for your check up.
Foofoo, I agree that your manager definitely deserved that big kiss. I think I will drop to half pay before I'm done with all this which is a worry. We will just have to live on beans on toast!
Waving to everyone.

[amberlight]

HER2+ used to be a problem. It isn't now, because this last year has seen amazing new stuff come out for it and new research, which makes it possibly the most treatable form of breast cancer (if people get on OK with Herceptin). Reading anything on Google about it is Bad, because Google is all the stuff from the dark ages before they had the answers. So fear ye not.

[Mummywheel]

Marshy when I was diagnosed HER2+ the pathology report really scared me when it stated intermediate prognosis. Luckily Herceptin is available now and as Amber has said it is very treatable.

Foofoo I'm also very grateful to my employer who has carried on paying me my full wage and I've not been back to work since diagnosis in December.

Waves to everyone.

[beccajoh]

I'm a complete snotty, sobbing mess today. I just don't know how I'm supposed to cope with all of this I'm exhausted, I can't look after my own children alone and I feel so guilty that people are having to come in and help out all the time. I mean HOW did it all come to this? I'm 34 years old with two tiny children. I should be out at the park running round with them in the autumn sunshine, not hiding inside because a) fear of sunburn and, b) I couldn't run round after them even if I tried because I'm too stiff and achy.

A friend of mine was complaining about her morning sickness the other day and I wanted to yell at her to stop moaning. It's temporary! You've got a future! What have I got? The end is near, whether it's six months or six years away. I'll be lucky to see my 40th birthday. I'm going to have a bloody big party if I do make it that far.

[elportodelgato]

Becca, I couldn't read and run, I wish I was there to make you a cup of tea and give you a hug. This whole thing is SHIT no matter how you dress it up, it's bloody unfair that you are going through all this when you are young and have small children. Is there someone you can chat to IRL today (not your annoying friend with morning sickness )? Or any support at the hospital which you can call on? Virtually holding your hand x

[foofooyeah]

becca so sorry you are feeling so bad today. Completely understandable. People with no experience don't understand and say silly things sometimes.

Its not for everyone but have you thought about some counselling. Just the chance to talk to someone outside your family / friends

Don't worry about people having to help. People want to help. Let them.

Wish I could give you a hug and a cuppa too.

I had something similar with a friend too: moaning about her hair being messy as I sat there bald as a coot!

[jomidmum]

Hi, I hope it's ok me posting here. 3 days ago I had a central duct excision, quite a large area was removed, currently waiting for histology results.
I'm in a lot of pain and am taking ibuprofen but it's wearing off after about 3 hours. Is there any other pain relief anyone can recommend? The breast has nasty bruising covering it so I thought I'd try some arnica. Any other thoughts would be greatly appreciated. Thanks.

[mrsrhodgilbert]

Becca, I'm also so sorry to hear you're having such a horrible day. We've all had them and its utterly miserable and scary. I fully acknowledge that your situation is different to mine and I cannot grasp the extent of fear you must have, so young with such small children.

Have you been offered the opportunity to talk to someone outside your own circle? Perhaps it might help a little. Are you able to get outside at all yet?

You can shout and scream on here, we will all understand.

Jomid, hello. Again sorry to hear you're suffering. Have you heard of alternating ibuprofen with paracetamol? You take one, then about three hours later take the other so that you iron out the peaks and troughs of pain. Obviously stick to the correct doses but the two are fine together. I was sent home with codeine too, but didn't take it. That's an option.

[beccajoh]

Hi Jomid, sorry to hear you're suffering. I cycled ibuprofen and paracetamol after my surgeries, with codeine in addition if I needed it. Hope you're in less pain soon.

The cancer nurse has referred me for counselling after my appointment on Monday. Up until now I haven't felt like I've needed it but I've been really struggling the past week or so. She's also referring me to the dietician because I'm losing weight. I've lost a stone in the last three months. Eating is a real struggle. I feel well most of the time, but just have no appetite or when I do feel hungry I get full up REALLY quickly. I've been using a food/exercise tracker and most days I'm only eating 1000-1100 calories. I did manage 1600 one day but that was a huge effort and I felt telly bloated and yucky all day.

[beccajoh]

telly=really!

[amberlight]

Beccajoh, glad they are recommending some counselling. Talking it through is something most of us do, and it does help most people.
Your consultant will (I hope) be aware of the trial results from combining ipilimumab and nivolumab for advanced melanoma. Extraordinary results so far. Think I mentioned it before. Since these give an average of three years of 'thinking time' for even newer potions to appear, you are most definitely not certain to cop it in six years. Newer stuff is happening every year, at the moment. I would ask your consultant about getting a full report on the molecular and genetic stuff, so they can tailor the treatment even more effectively. Meantime, nibble little and often, rather than in big meals. Sending a large , which isn't a lot of consolation at the moment, I know.

[Marshy]

Becca - hugs for you. It really is indescribably tough to endure this.

I am watching the minutes tick by whilst i wait for a phone call from BCN possibly with more results after MDT this morning. I feel like i might faint....

[elportodelgato]

Becca, it's great to hear that counselling is on offer for you so soon. I have had 2 sessions so far and have found it very very helpful, in the first session I just cried and ranted for an hour but that's what they are there for and it was a huge relief to get it all out in a really safe environment. I hope you'll find it useful and that you can hang on until then. Also, I know this isn't a miracle cure but the antidepressants I am on have made a real difference, I was very loath to take them at first but now I can see the sense of it.

Hold tight, we are all here for you

[foofooyeah]

Oh Marshy that made me feel a but faint too. Hope you hear soon and its something positive and/or useful.

becca I would fully expect to just cry for the first session, I think most people do. I sincerely hope you find it useful.

And do heed what amber says. She always says she is not medical but her advice was the some of the most useful I received. Its fine to insist on further investigation .... in fact I believe a lot of oncologists relish a feisty patient who wants to go further with their treatment. Mine supported me once I stated exactly what I expected.

[mrsrhodgilbert]

Oh marshy, I hope your nurse rings soon. I was in a terrible state waiting for results recently, far worse than waiting for the first diagnosis. I knew what would be coming if positive. Will you snap soon and call her?

[beccajoh]

The drugs I'm on at the moment aren't really compatible with anti-depressants unfortunately. Something to do with risk to my heart. Not totally impossible if things got really desperate but I'd need heart scans minimum of once a week...