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!

Thanks Lily and mrsrhod :)

I really appreciate hearing your perspectives.

I agree Mrs Rhod

Bathtume, I should add I'm taking this because I have cancer, not to avoid it. Not sure if that was clear.

That poster has reactivated an old thread with cancer in the title to list that appeal. Hope you don't mind but I've reported it.

I reported as spam as well.

I will report too. That's completely inappropriate.

Bathtime I've no useful experience, but welcome. The thread was originally for people taking Tamoxifen, and it has gradually expanded to include any types of cancer and cancer treatment :) sorry you are in this position. I hope your dad's treatment goes well

and for mumof2

Sleepy I hope your new toxins are very effective and wth minimal nasty side effects!

Speedy I hope your first day back at work went well, and I hope the indigestion eases soon.

mrsrhod good luck for your almost two year check up

Hi everyone

Has anyone had experience of neutropenia? My temperature started to rise on Saturday night which was day 9 of FEC cycle 1. I called my oncology helpline and was sent to A&E. I felt well apart from having a fast heart rate and being shivery, and my temperature was only 38. The blood test showed I had no neutrophils so I was kept in for 4 days on IV antibiotics until my counts improved. My blood cultures were clear but I have been sent home on oral antibiotics. I had been given injections for days 3-10 post chemo to prevent this, but they don't seem to have worked.

It's nice to be home although at least in hospital I was barrier nursed so I had a private room with its own bathroom. It was a bit lonely though, spending so much time on my own. I'm a bit concerned about this happening again, but I guess they will tweak my chemo dose next time.

Hi evryone,

MySilly, sorry, I haven't really experienced neutropenia, hope you are feeling better now.
Welcome Bathtime
Hope you had a good day at work speedy

Disappointing day for me as I saw my consultant for the results of my MRI and they didn't have them as the radiologist had been on holiday. This means that they couldn't decide if I should go ahead with the next dose of chemo tomorrow or not because they don't know if I am responding to the FEC . All they could do was poke my breast and try to decide from that if it was growing, shrinking or staying the same. Which is really hard to tell. Anyway I'm going to go have it anyway, can't see there being anything to lose as they won't know the results of the scan until at least Monday. If there has been no further response then this will be my last one before surgery. Scary!

Sorry you've been feeling rough and stuck in hospital Mysillydog. No experience here. I was kept in once or twice when they were heading that way, but thankfully never got low enough to need isolation or anything. Yes,I imagine they will lower your chemo dose a bit to prevent it happening again.

fresta that is frustrating! Good luck for your possible last chemo :)

That is great Fresta, last chemo is definitely a milestone. The surgery will not be as bad as you think. You are nearly there!

Mysillydog, your hospital experience sounds frightening. I hope that with the booster injections you manage to produce enough blood cells to save you any more worries. I imagine they may have to tweak your chemo as it sounds a little too effective.

I have booked tickets to an outdoor theatre performance in July. i hope not too wildly optimistic!

Evening all.
Thanks for good wishes about work. Really enjoyed being back and the class seemed so pleased to see me which was lovely- am sure they'll change their minds quickly though!
Being back at work leaves me not much time to be on here but I will try to keep up.

Great news mumto. Very pleased for you.

Mysilly- sorry you have been in hospital; hopefully they will sort dose out for you next time.

Fresta-what a pain to have to wait for results when you needed them. Hopefully this dose will have a positive effect.

Sleepy- outdoor performance sounds good.

Night all

Good morning all. I hope all is well with everybody.
Mum2 : great news!
Mysilly: wishing you all the best.
Waving to everybody else.
I still havent started my rads. The delay is worrying me a bit. I was told I would start around the middle of the coming week. In the meantime, I find myself wondering if any new cancer cells have grown or spread. I guess it is going to be like this from now on: the worrying and what ifs!
Have a peaceful Friday all.

I actually never felt that unwell, and in many ways felt like a bit of a fraud. My CRP did not go particularly high - I think it maxed at 25. I was on my fever as soon as it climbed, taking my temperature hourly once it got to 37.7 and onto my helpline for advice. I guess that is what prevented a potentially nasty situation arising. I had wifi in the hospital but my iPad gives up on long threads so I couldn't post.

Fresta that is very frustrating and good luck for your chemo today.
Speedy it's great that you are back to work. Are you having a phased return or going straight back into it? I hope you do not suffer too much from fatigue.
Royal hopefully the rads will start soon. I think the fear of spread will last a while, and probably always be there but hopefully will lessen with time.

Hi Royal, you sound a bit gloomy, quite understandably. Waiting around for anything to do with cancer is unnerving, the little grey cells go into overdrive. Do you not have an actual start date yet? Maybe a call to the rads people today would clear that up so you could feel more relaxed this weekend.

I think the worrying is something we have to live with although I don't think anyone else appreciates that. Apart from my lovely DH I get the impression that nearly everyone else thinks this is all better now. In reality I think about it almost every hour, not helped by constant media obsession.

I'm coming up to check up season myself so getting a bit angsty.

I have booked tickets to an outdoor theatre performance in July. i hope not too wildly optimistic!
I'm booking holidays for August/September, can't let a spot of secondary cancer stop me!
Lots of people think I've "done cancer" too as my initial treatment was getting on to three years ago. They equate cancer with looking wan and having no hair (and they don't realise I'm wearing a wig).
considers taking off wig when on tube in order to shame people into giving a seat to the poor "cancer victim"

It's funny how we interpret things differently, I assumed sleepy was referring to the risks of booking an outdoor event in July because of the weather. I have a feeling she may be local to me and rain in July is not unheard of!!!

I would hesitate to book an outdoor event in July even in my part of the country (lowest rainfall) until a few days/hours/minutes before the performance! DH has sat through several soggy "Shakespeare in College Gardens" performances whilst I've stayed at home in the dry!

Afternoon all,
I haven't checked in since before my holiday in January, though have been lurking a bit to keep up with you all.
Amber - I hope your brush with services is over now, and Mum2 - great news re your mammo! Fingers crossed for you too MrsH.
Waving to everyone else and wishing all well.
My holiday was fab.We were in Cuba for 2 weeks with friends. Had a great time and since returning I've taken up Spanish and salsa lessons
Fretting is never far away. I've just booked an overdue smear test and feeling pessimistically doomed to having that show something, when I allow myself to think about. No grounds for those thoughts but.....well, y'know.
In the meanwhile, I'm making the most of being healthy and appointment free until someone tells me otherwise!
Wishing everyone a good weekend
Marshy x

Surgery mid March, for me. Removing the badly behaved area of skin. Hopefully straightforward. Yes, know what you mean about booking tests. Always bracing.

Hope you all have nice weekends planned, I'm taking it easy, side effects minimal at the moment after yesterdays chemo, so off out about doing errands while I can.

Amber, sorry to hear you need more surgery but hopefully that will sort it, do you have a definite answer for what the problem is yet?

Nice to hear from you Marshy, I'm sure evrything will be fine with your smear

A massive umbrella and wellies and your outdoor event will be great Sleepy!

Speedy, glad work went well, if you are a teacher then you won't have time to worry about anything else, I work in school too and can't wait to get back to mayhem of it all, there's nothing like kids for making you forget yourself.

The path lab know it's radiotherapy damage. Inflamed skin and signs of cell changes. This is four years after rads. So they are hoping to study it further once it is removed along with a wide margin. Should be straightforward I hope.

Good luck Amber with your surgery
I hope everyone is having a nice weekend. Fresta I'm glad you are not having too many SE's so far. I have been shopping with the dc's for World Book Day costumes - I'm not craft minded enough to sew my own so I have cheated.

I also took control of my hair loss and got a number 1 shave yesterday. The salon where I went to has a back room so it was nice to have the cut done in privacy. She said she has done this a few times before for women. The hairdresser went down the clippers setting. I quite liked the number 5, but I wanted as much off as possible. The thought of losing my hair was more upsetting than the thought of being bald for me. However, I am very sensitive to the cold, and I'm wearing two hats at the moment. But it is very cold today with the wind.

Evening all.

My Silly- no phased return this time, although I did after my chemo and BMX. I work 3 days though so it gives a bit of rest time. Glad you are keeping warm with your hats. I found it better once my hair was really short, rather than it coming out in handfuls. Tis crap though.

Fresta- I did indeed have no time to think! They were all lovely but unfortunately are at stomach height when they come in to give you a welcome back hug! Glad your SE are minimal at moment- fingers crossed they stay that way.

Hope surgery goes well Amber.

Glad to hear from you Marshy. Hope smear ok and well done for booking it. I hate them but needs must.... Glad you had a great holiday.

Good luck with your surgery Amber.

I hope you have lots of snuggly hats Mysillydog, your hair will be back soon.

I am struggling with breathing at the moment, and I am finding it really hard to eat food at all. I am probably only taking the placebo so I am very impressed by the power of my mind! I did manage to get the kids uniforms in the wash today , even though I have done nothing else.

Sleepy- I hope your breathing improves and you can eat more tomorrow. I think you are allowed to not do much but understand that it is frustrating when you don't have energy to do so. The power of the mind is very strong but you could be one of the ones taking the real thing. Will you ever find out or is that something you won't get told? I hope you get a good nights sleep.