Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

Hi everyone
I went to see my cardiologist and she gave me a clean bill of health. So there are no cardiac contraindications for chemotherapy or for herceptin. She had another doctor with her who will take over when she retires who had worked in onco-cardiology, and I really liked her too.

We chatted a bit about the trial I have been offered of avoiding lymph node surgery. She didn't really comment much beyond suggesting that I go to hospital and do as my doctors say, but she understood my reservations about my cancer being grade 3 and all the false negative results I had in the run up to diagnosis. Also the fact that both my nodes were positive. I wish the surgeon had sampled 3 nodes. If I had 3 positive nodes I would be ineligible for the trial, and if I had 2/3 positive nodes I would be able to see that the invasion ended somewhere. With 2/2 positive nodes I don't know if there is more cancer or where it is. I don't think it's a hugely risky trial, but maybe I'm too cautious.

Dh is still really keen on the trial because I may avoid being kept in on a heparin infusion for a week. After long hospital stays I'm normally not very healthy because of lack of sleep, exercise and nutrition, and I need to be healthy going into chemo. But he understands it's my body and my choice.

My admission date is tomorrow but I'm going to try and put it back to Friday not very good at doing what my doctors say.

Difficult decision. What do your instincts say?

The trial nurse has tried to call me for the last 2 days but I have been out. My instinct says no. But it's unusual for dh and I to disagree. Although we also disagree on cold capping. His friend cold capped and was so happy that she kept her hair, so he thinks I should try it. I really don't want to lose my hair but having read about how losing part but not all of your hair has difficulties and the unpleasantness of cold capping, I think I might just go for a wig. But I want a fabulous one

Hi everyone, just dipping back in as i still read this thread, despite being two years out from DCIS and a bmx.

best wishes to all of you still going through it.

books I opted for immediate reconstruction with implant. And I begged and begged and got the other one done too, 6 months later. So they match. (Vanity or mental health?)

Implants look really good, because I'm small chested anyway, so they've gone back to their pre-breastfeeding glory. So to the outside world, all is just as it was (to which what I really mean is, my children don't notice anything. And aren't worried by them in any way). But, they are much harder than normal boobs, so when I sleep on my front I need a pillow under the gap between them to make it comfy, and the DCs used to complain about them when they sat on my lap. They're used to them now!

Other thing is that I think all implants are put under your chest muscles (assume that's the only way?), so I am a bit more cautious in using those muscles as it doesn't feel quite right.

But I really didn't fancy anyone going near my back...

Feel free to PM if you have any questions xx

Hmmm Silly, is difficult when what you feel is different from your husband. Ultimately you need to feel happy with your decision and instinct is important. Hope you can reach a decision xx
With cold capping I'm also not sure what to do. Might try it for one session and see how bad it is...hate the cold tho so unlikely!

Just wanted to shout out to nanny if you are reading, hope you are doing ok and managed to sort out your scan date.

Yes nanny I've also noticed you have been missing for a while now. How are things?

I don't really know much of nanny's posting history as I haven't been around that long, but I don't have any reason to doubt her most recent posts and there's too much to read back over. I would hate to think that someone who needs support feels they can no longer post because we don't believe her so I hope she is genuine and does come back and lets us know what is happening.

I find it impossible to remember the full back stories of all posters on this thread so would be hopeless in assessing whether they are genuine or not. There have been posters in the past who have either embroidered or invented their stories, but I think this is a risk that you have to take with an open forum.
I've found this thread friendly, kind, intelligent and much more my style than other online cancer forum so I will take the risk of the very occasional poster who isn't completely genuine!

Good post Sleepy and I'm sure a lot of us agree

However let's not let this detail us from the great support on here. Hope everyone is ok today ? Thinking of everyone with appointments and worries today

derail !

Hi all, thanks for the welcome. Fresta, yes, been having chemo every fortnight which has been pretty full on. Found the lump in July perhaps (can't quite recall but it was in summer) and life was so busy and wasn't unduly concerned but did go to GP early September and then to breast clinic on 16th when it was pretty clear that it wasn't looking good. However had to wait a week for confirmation (awful!) and then the ball started rolling, very quickly.

I've only been here for 18 months and it has never once occurred to me that someone might be being less than perfectly honest. I did witness a bit of a scrap shortly after I arrived where someone did leave because she felt she wasn't being believed, but I was too new to understand the detail.

I think we need to accept that hospitals vary hugely, doctors are not all brilliant and cancer is unpredictable.

Also, just because someone isn't posting doesn't mean they aren't reading.

Welcome happy but sorry you've had to join us

Sleepy it's rubbish that your oncologist isn't giving you more useful advice! I hope seeing your mum helped a bit.

As mum says, probably best not to let the thread get derailed, especially as we have so many new people needing the thread.

It's always best to let MNHQ deal with any suspicious situations as otherwise it can descend into "troll-hunting" which is against talk guidelines. I'm not suggesting that anyone is at the moment, but it's perhaps not an appropriate discussion to have on the thread.

I agree with Lily, there's always a risk with an open forum that people might lie or use it for the wrong reasons. It would be a shame for that to put people off coming here though, or damage the reputation of our wonderful thread :)

I am a bit uncomfortable with the idea of people presenting their fears as reality, as it isn't really in the spirit of the thread and could be worrying or confusing to other posters.

Anyway, I shall practise what I preach and stop discussing this now

I hope everyone slept well.

Interesting turn the conversation has taken since last night!
I think I am going to splash out on a super wig which can stay attached to your head for a month at a time! Don't think I can face the cold cap and scarves do not suit me (at all!). Has anyone had a wig like this? Goung to have my head measured and meet the wig people tomorrow. Think this will help my dds (6 and almost 8) find everything easier, and hopefully me too. They take a month to make so may cold cap for first chemo so that I get my wig before all my hair goes. With fec my nurse said even with a cold cap only 30-40% keep their hair. Not sure if this is true?
Silly, hope your decision making is going ok. Hello to happy and all others 😀

How does it stay on for a month Summer ? Even in bed ? Have never heard of that. I had a fab wig, I had my hair cut into a bob then had a wig in the same style, people who didn't know I had cancer just thought I'd had my hair cut and I liked to be able to go out without everyone knowing I was ill. I got mine from a hairdressers which had a special wig room, they cut into it to make it more natural. I went with my friend and it was raining so I waited in the doorway and she went to get the car. A man walked past and commented, 'typical love it always rains when you've had your hair done.' Was the best thing that could have happened as he didn't realise that it wasn't my hair. I am quite teary now thinking of that moment !

Sorry, summer it's not the best introduction to the thread for you :) please don't worry, I'm sure the vast majority of posters here are completely genuine.

I didn't lose my hair so hopefully someone will be along shortly with wig advice :) I think it usually falls out in the third week of chemo so depending on timings you might get away without cold-capping.

Also, anyone newly diagnosed, check out Look Good, Feel Better. They do free make up workshops for women with cancer. They teach how to draw on eyebrows and compensate for lost eyelashes, and you get lots of free products to use. It's really fun too :)

I managed to delay my admission by a day. So I go in tomorrow rather than today. When I phoned the ward the first nurse I spoke to gave me a lecture about not being serious about my treatment. Then I was put onto the nurse in charge who was much more sensible and agreed there was no point in me coming in today. I'm not going to need my infusion until tomorrow so I'll just be taking up space and eating not very nice food.

I think a curry might be nice for tonight.

Summer I like the sound of a super wig. Does anyone know if wigs are itchy or does it depend on their quality?

Wigs? I loved them. Others didn't. Very individual. I used the Rene of Paris collection. www.reneofparis.com/wigs/noriko/ for example. And had a chemo wig specialist who advised on it and could alter it a bit if needed. I always wore a wig cap under it (bit like a mini stocking) which stopped slipping and made it more comfy. Just so easy to wash, drip dry 'n go. Well worth finding an adviser who has a good few to try on, somewhere relaxing.

I hated my wig! I used handybands from seasalt, felt much more comfortable. The DCs seemed to cope ok with the lack of hair - DS1 was 6 at the time and told his class I was training to be a pirate.

Mysillydog glad you got hold of a sensible nurse (eventually!) and managed to delay :) you'd think they'd be pleased to have an extra bed for the night!

I've been cold capping the whole way through. Have found it dreadfully hard I have to admit and wept pretty much each time. However it was ok last week and I find if I take paracetamol about an hour before it is ok and I just tend to zone out a bit. That said, I have lost quite a bit of hair on the top so have taken to wearing my wig a lot more in the last few weeks. When I went in for chemo on Tuesday they weren't going to let me cold cap as so much of my scalp was visible but with a bit of creativity and combovers (!) they managed to do it. I was upset at the thought of having to stop now, so close to the end.

Hi All,
Mum- not sure how it works. Will post after consultation tom. Am interested too, the nurse who gave me the details said you can even swim in it(!). Would you be able to pm me who you got your wig from?

Look good feel better sounds great as I have no idea what I will do without eyelashes and eyebrows. What do people do?
Amber, thanks for the recommendation. Will check out their website.
Silly, glad you got hold of someone sensible. Curry- yum 😀 May get a take away this eve too if I can persuade Dh!
Happy, just wondering how cold capping went? Impressed you stuck it out despite the discomfort x

Yes, it has been tough cold capping but as I said some weeks harder than others. And I'm not sure why really. Glad I did it though there is a sense of the bittersweet about it as it has been so challenging. Funnily enough I haven't really lost my eyebrows or eyelashes so don't take it as a given. My chemo regime has been fortnightly AC x 4 and fortnightly Paclitaxel x 4.