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!

I didn't pay as much attention to the eyebrow/eyelash bit of the workshop as I still had mine. But you can draw eyebrows on with pencil, or fill in any bald bits if you've still got some eyebrow left. You can also get little kits with powder, I'm not sure how they work.

With eyelashes the only thing you can really do is use eyeliner to define the eyes more. The LGFB lady said not to use waterproof mascara during chemo as it is more drying to the eyelashes and makes them more likely to fall out normally, so not ideal if they are thinning anyway.

I've not heard of anyone having chemo fornightly Happy, at least you have got through the sessions more quickly - I feel slightly envious as your situation sounds almost exactly the same as mine. I too found my lump in July, but didn't go to the doctor until first week in Sept as I decided it was probably hormonal as it changed with my menstrual cycle. Do you know how long you will have to wait for surgery after chemo finishes. I keep thinking I will be too exhausted after another four rounds to face any surgery. Then I keep worrying that if they wait a few weeks after, that the cancer will be growing and sending out more cells round my body.

I know. I have met a couple of others in my situation and most seem to be having it every three weeks. I didn't even ask why it was being fast-tracked. I don't know when surgery will be but am suspecting end of February. I do remember that initial talk back when I first met surgeon was probably four weeks-ish after chemo finished and to be honest I really want a few weeks to get my head around it. Oncologist said that she wouldn't want it to go past five/six weeks so in my mind I have it as probably end Feb. I know what you mean about the cancer growing but am sure you are in good hands

I have thought long and hard about whether to come back on here, in reply to what has been said. But I have nothing to be ashamed of as I have done nothing wrong.

I don't want to turn this into a slanging match, as this thread is supposed to be about supporting people going through Cancer. I like to think I have done my bit in answering people's concerns and offering advice, like you all have.

I think some of you have lost sight of the fact that not all hospitals run smoothly! The same as Cancer doesn't have one set path. But that doesn't mean that someone is embellishing the truth or lying. I have struggled on my journey and am not ashamed to admit I am still struggling. The reality is this journey is tough, and not everyone will bounce back immediately. But that doesn't make them a dishonest person.

I think some of you need to remember that we don't all have a mass of support in the real world, some people are dealing with this pretty much alone. So forums like this are very much needed, but only if the people on it treat everyone with the same respect.

I hope the thread continues to help those who need it, maybe with a few of you being a little less quick to judge someone who just needed some help!

Nanny - I think you were diagnosed round about the same time as me (Oct 2014). Obviously you posted a lot more when you were going through treatment than you do now. I just want to say I hope things are going ok and I do understand how hospitals don't always work like clockwork!

Oh dear.....I quite enjoy a good old bunfight on other threads but not here I hope

FWIW I tend to take everyone at face value here. I can only remember one person who I thought might be 'embellishing' and that was a relatively short stay quite a while ago. Kept my views to myself and concluded that everyone expresses themselves in their own way, especially when under pressure.

Peace and love people

A very dignified response, Nanny, hope you are not too upset. I am an irregular poster but regular reader of this thread, and would feel very upset if I was doubted to be genuine. I also have had experienced issues with missing test results (in my case for infection) so have sympathy that indeed not everything runs smoothly!

Anyway, to update, as I have not posted for a while... Was meant to be having a risk reducing double mastectomy and implant reconstruction in November, but pre op picked up that I had MRSA! After treatment showed I was clear, had op rescheduled and carried out end of December. Am currently sat in bed typing this feeling somewhat bruised but ok. The worst bit so far is the drains...

Hi Nanny, so glad you came back as your posts to me have always been so supportive and useful and I would hate for anyone to be upset. I think that we do need to remember that behind every post is a real living person (even trolls have feelings- not that I'm suggesting you are one) .I hope you managed to arrange time off for your next scan and are not too upset by what has been suggested and can still find support here.

Nanny, it's lovely to hear from you again and I'm sorry you were subject to such unpleasant speculation.

My own bil spent two years having tests before cancer was finally found, sadly too late and he died in August, far too young. He had had cancer many years ago so it made the treatment he received all the more difficult to comprehend.

Not all hospitals are the same, things go wrong. Procedures are not always followed, some medics are rubbish at communication, I've experienced that myself. Some on here are fortunate enough to be seeing real experts in their field but it surely follows that others are not so experienced. It is not the patients fault and not helpful to be told things are not being done properly.

Nanny is still waiting for tests and results and if she wants to come back I for one would be very happy to see her here.

@Marshy

Peace and love people

Evening all, this thread has been reported (though please be assured we have no reason at this point to have any concerns about anyone on this thread) but we hate to see any kind of bunfight on such a supportive thread.

So thought we'd just pop in with a reminder that we do advise all our members to be aware that not everyone on t'internet is who they say they are, and that, although we're awed daily by the astonishing support our members give each other through life's trickier twists and turns, ESPECIALLY the folk on these phenomenal threads, we'd always caution anyone never to give more of themselves to another poster, emotionally or financially, than they can afford to spare.

I suppose if there's one thing we can all do with, it's some moral support.
PEACE and LOVE
MNHQ

Thank you Olivia.

I don't want to inflame the situation further, but I just wanted to defend Sleepy a little.

I assume that not everyone saw her post before it was deleted, so are basing their response on what has been said afterwards. Her post wasn't unkind and actually her point was that even if anyone was being untruthful in any way, they should still be welcome here for support. She wasn't suggesting that she herself believed anyone to be a troll or anything like that. Obviously it wasn't the best idea to post it, but she requested it be removed herself.

Sleepy I hope you are OK, you have had a shit few days anyway. Please know you are still welcome to post here, especially if you are feeling down

It's a bit to see the blue MNHQ have commented bit at the top of the thread so hopefully we can all draw a line under this incident now.

Olivia!
I thought you only did Archers threads!
Well, as we were ....
Wigs - I am pro wigs (back wearing mine again and starting to think of getting a new one if I keep having chemo). I think mine is German and I got mine from a hairdresser who was very experienced in fitting wigs for people with cancer. He styled the wig to suit my head shape. I've not heard about super wigs and would be concerned that they might compromise texture and a realistic look if they can be worn 24/7.
I decided to put some mascara on yesterday - first time since before Christmas. Wondered why I couldn't see any result until I realised (Doh ...) that I have lost all my lashes this time round.

I didn't see sleepy's comment. I think there have been a number of comments over the last few days which could be misinterpreted if someone was feeling sensitive.

And I guess we've all felt a bit sensitive from time to time - goes with the territory really....

I have to confess a bit of a at you putting mascara on your missing lashes. But that they're gone.

Losing lashes is hard I remember my eyes being all watery without them to protect them. They do come back quickly though

Leslie mentioned look good feel better earlier, for the newbies you must do that it's a lovely morning and you get a big bag of freebies, make up and stuff

Ooh yes, I still have some of my Look Good, Feel Better freebies. The best one is a Chanel lipstick it's actually not as good as my favourite M&S £5 lipstick, but it makes me feel glamorous

Hi all! I just started writing a long post and the battery went dead😖

Gosh, lots of new posts here.

Summer, with regard to wigs, I find mine it itchy but then I'm very sensitive anyway; I cant wear wool or linen so I'm not the best person to ask. The month long wig sounds great though! I was very worried about the kids' reaction to my baldness but they're completely fine with it now - just as long as I wear my hat when it's school pick up. Round the house I tend to wear a little cotton headscarf that I used to take on holiday. Outside I wear bobble hats or my hat from suburban turban. I did scare a little girl in the supermarket the other day though when I got hot and took my hat off. It's only to be expected I suppose, you don't see many bald women!

Silly, I know how you feel having to make a decision as I'll be in the same boat shortly and sometimes the more research I do, the more confused I get...

I've had my second lot of weekly tax today. I feel fine, just a bit tired; they give me antihistamine and it knocks me out, right there in the chemo chair! I'm also very hungry. Do you think it's the steroids that do that? I'm trying to eat well but it's hard with all the Christmas chocs left lying about although I did take a load of boxes to the food bank yesterday as we had far too many. People are being nice but I wish they'd stop buying me chocs when I'm trying to eat well. My very well meaning MIL keeps trying to feed me up with anything. I think people associate chemo with weight loss but most people gain weight now. I've borrowed the Breast Cancer Cookbook from a friend and it's got some quite nice recipes in that I'm going to try. I also got the Jamie Oliver Superfood book at Christmas which I like the look of. Not really sure anything helps with the cancer but it makes sense to eat as much nutritious food as possible.

Does anyone have a line/ port fitted? It took 5 attempts and a whole hour to get the thing ( forgotten the name!) in my arm/ hand today. They've offered me a line but I'm worried about possible infection; but I'm thinking that as I've got at least 7 more lots to go it might be a good idea?

I had a port a cath, done as standard privately I think. I found it great - although it did taken them 45 minutes once to get it attached, I thought DH was going to keel over! But that was unusual, it made life an awful lot easier.
I loved LGFB and I still have some of the goodies too. I never used to wear make up at all and now I'm a lot more confident putting it on generally!

Ooh yes, Anna, hunger is definitely the steroids! I'm glad you're not feeling too rough, long may it continue :)

Quite a few people have had PICC lines. My oncologist threatened me with one if I didn't cope well with my first chemo so I thought they were a bad thing, but I really wish now that I had had one. It used to take ages to find a vein, so annoying.

@Lilymaid

Olivia! I thought you only did Archers threads!

I am the official Archers correspondent for Mumsnet, yes, but my remit runs outside of this too.

Big love to you all

I had a picc line - for me it was the best thing ever - I had all my chemo through it as well as blood tests and IV antibiotics etc.
I had it for 6 months without any trouble but I do know that others have not been so lucky with them.

A very quick dash in- Anna- definitely go for the PICC if they offer you one.
My veins started to hurt after second one and they were very sore even after I had line put in. It saved being stuck with a needle every time they took blood too. I wish I had been offered one at the beginning (I think they offer anyone having FEC now at my hospital)

I now have a date for having my ovaries out; beginning of next month. Need to get organised.

thinking of everyone.

Glad you have a date Speedy, how are you feeling about the op?

Can recommend a Portacath - almost invisible and means you can knit whilst you have chemo!

Hello everyone.

I have my colonoscopy appointment next Sunday. On the plus side, a weekend appt means DH can take care of DS. On the negative, it will mean a shit weekend. Literally (sorry bad joke)

Seriously, it will be good to have it done and dusted. To be told it is just some fissures and a bit of IBS, before sending me on my way.

Good luck today my sillydog. I am on my phone and my memory is rubbish so apologies for not name checking.

As always best wishes to you all.