**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

Thanks everyone for sciatica sympathy. It really is quite debilitating and tiring being in pain all the time but I'm pleased to say I slept like a log last night (well, midnight to 6am) and woke feeling fairly comfortable.

Have taken meds today but feeling ok and taking it easy still in pjs My choir has a remembrance day concert tonight so I'm going to take part and hope i make it to the end!

Lily hope you're feeling better soon. Mrs good news about your dd. It's hard to be bouncy when you're feeling under the weather. I'm sure some home tlc has helped. I dropped my dd off in central Birmingham to get her train to London on Friday morning on my way to work. Won't see her now until Christmas.

I've just found out that my annual check up with the surgeon has been delayed from 30th Nov to 21st Dec. Good that they're in no hurry to see me but I'm really hoping I don't get anything to fret about in Christmas week.

Boobz good wishes for your mxs and implant recon. I had mine on 2 separate occasions. I was in hospital 2 nights with the 1st and one night with the 2nd. Discharged with one drain both times which was taken out a few days later by the district nurse. Had codeine to take but was soon managing on just paracetamol. Hope it goes smoothly for you. Any questions, just ask

Glad you're feeling a bit more comfortable, Marshy, and hope the concert goes well.
Best wishes for a smooth surgery experience and good recovery,Boobz. Are you looking forward to your retreat break?
I hope the transfusion helps Lilymaid though sorry you have to have it.
Welcome lifeoverboard. Glad to hear you have good support, though I totally appreciate your concern about feeling ill again...
Thinking of you mysillydog and hoping you're finding some distractions and the weekend isn't passing too slowly.

How is everyone's chemo going? I'm feeling a bit ropey after my first lot. I was rather cheered by the arrival of the 4 o'clock tea trolley during the treatment. Only the British would say 'In your face, cancer!' with chemotherapy and custard creams.

Hello and thanks for the welcome. Mine doesn't seem to be genetic yet my aunt died from it in her early 50s but as that so far only makes 2 of us i dont qualify for any further testing until someone else in the family gets it anyway whatever. My kids are still advised to start early checks.
I have seen the info in staging thanks it is just confusing because I could swear the original doc outright said it had not spread to lymphnodes and they definitely have not biopsied any but the N1 indicates it has, right? And I keep forgetting to ask them about it. I don't have any detail about the surgery really just that it is laparoscopic! No names of procedures or anything.. I will have a temporary ileostomy until after chemo thats all I know really. I am in spain so there are some differences in procedure, all info comes very much in dribs and drabs although I cannot fault the care at all. Since I was diagnosed at least. Before that is a whole other story.

For some reason I thought it would be a good idea to google about the surgery. I mean i really have no idea what to expect at all. But i did freak myself out a bit. I don't want to be sick! Hahaha. Shit.

Thanks for letting me warble on. I am now going out with some girlfriends. I think its going to be a busy month socially as I mentally prepare myself to go into lockdown after surgery

Sorry i pressed post too soon i wanted to wish you all a happy weekend whatever you are up to...

Welcome to you Lifeoverboard and hope the surgery goes well Boobz

My hair is very thin now, can't believe how quickly it comes out, it blocked up the shower today and I had to clean it all- a tad depressing! I think I will be wearing that wig before I know it. Its funny how we have no idea what our naked heads will look like. I have been to a Headstrong appointment with two lovely elderly ladies who showed me how to tie scarves- I cannot for the life of me get a nice bow at the back like they did- I really don't think it will be for me- although I did buy a little cap for night time and have ordered a couple more fancier ones from Suburban Turban. All very daunting.

Can anyone recommend ways to deal with eyebrow and eylash loss? I have never been one to have penciled eyebrows so no idea how to get a good shape or what sort of pencil to buy? Or should I use a powder?

Hello LifeOverboard and welcome. It's good that you've got WhatWouldLeslie to give you lots of advice on your particular cancer. It's interesting that your cancer hasn't be staged yet; I don't think mine has either although I daren't ask!

Lily, I think you're right with your observations about the nhs v private care. I know I'm just being a little paranoid. I think the real difference kicks in if and when standard treatment has failed; that's always the worry in the back of my mind. It's also nicer in terms of your treatment whilst at the hospital. I was at the Christie from 10am until 6.30pm on the day I had chemo and the actual chemo only took an hour at the most! The waiting around was horrendous although, to be fair, there was a cock up with my drugs being sent back to Stockport. I'm hoping that next time will be quicker!
Fresta, I've checked my notes and I was originally due to have Docetaxal, like you but then the weekly dose (for 9 weeks) is Paclitaxel (taxol). The downside of the weekly one is that I may lose my fingernails (lovely!)

Fresta, my two hats from Suburban turban arrived today and I'm really pleased with them both; they look nice and they're lovely and soft. My hair hasn't started to fall out yet though. God, the whole thing is surreal.

RoyalMama, I'm so sorry to hear you're going through this without support; that must be very hard. Are there any support groups in your area or would you not be interested in that kind of thing?

Hello ladies. anna thank you. I guess by now .i am quite used to doing this on my own( well not entirely as DH is a massive help especially with DC). I am not one to ask for help( a bad habit) but I think if I did have friends and family around, I would defintely enjoy that nless they fretted too much that is :)
fresta like you, I i have been anxious about losing my eyelashes and eyebrows and wha to do to mask the loss. So far( i have done 4 rounds of AC and 3 of the 12 weekly Taxol doses) i have lost the hair on my head and most of my body but my lashes and brows have just thinned out. I do not do much about my lashes but I use an eybrow pencil to fill in the patchy areas of my brows and it works. I too never used an eyebrow pencil before and I did not have a clue as to how to go about it, but a few trials and errors got me there:) i am truly hoping I do not lose the brows entirely,as that would be totally different!
Dinster you asked about the chemo. i am currently doing a 12 week Taxol and it is way less tougher than the AC,but I still get tired and my stomache gets upset, though not as badly as with the AC. My nails look awful( like I have been cleaning chimneys)but they are still intact for now. I have slightly sore soles( they started off worse) but my worse effect is the flushes and restless sleep. I get sooooooooo hot and bothered. Apparently having a hairless head makes you hotter not cooler( silly me for assuming no hair would mean no heat).
I am counting the weeks now till I finish the chemo( first week of 2016) and then it is off to rads , and I assume Tamoxifen too? I try to not think ahead especially as Tamoxifen has such a reputation!
Take care all and will be thinking og all those with procedures coming up.

Just a quick dash in until later as off out.
Fresta- I used powder and a decent eyebrow brush for eyebrows as suggested by the lovely people at the 'Living Well' ( I think that was what it was called) sessions run at the hospital.
When my hair started to fall out I went to the hair dresser and had it cut to about a grade 1 which stopped the hair from being everywhere in my house!

Thanks all for the well wishes.

Royal, just a quickie and I know this has been discussed before but I've been on tamoxifen since June 2014. I've had a couple of times of a few weeks each with hot flushes and my hair has thinned but I feel perfectly well. You might be absolutely fine on it.

Hope everyone had as good a weekend as possible. I wore my wig for the first time yesterday, was slightly paranoid that everyone was staring, but felt pretty good in it, it is so similar to my own hair that I almost felt myself again. I bought an urban decay eyebrow pencil and brow box which has too shades of powder and a wax to st them. Hoping to hold onto my brows and lashes just a little longer yet though

Dreading the next round of chemo on Fri, so making the most of this week by going out for lunch and seeing friends while I still can.

Royal, my DH has been fantastic so far, taking dd to all her activities and cooking dinner and keeping on top of house stuff while I wasn't feeling up to it. Friends and family have been very supportive, but to be honest, I don't really feel like having visitors coming to visit me to cheer me up, just want to carry on as normal as possible. And lots of visitors just means I feel pressured to have the house nice and look the best I can, I know they don't necessarily expect this, but for my own self-respect I feel I need to. Hope I don't sound too ungrateful

Five years on from chemo, and I still have almost no eyebrows. My eyelashes grew back, though. Plenty more of my fellow chemo buddies have eyebrow mysteries after chemo also. So a longer term plans for eyebrows may be a good one. Personally, I just do without eyebrows. Doesn't bother me. But I have a fringe now, so it doesn't matter so much.

fresta i totally agree with you on not really wnting to have people around so much. I think the reason why i am coping well is because I can worry only bout me!
Amber, oh dear I do hope I keep my eyebrows in the long run, as mine are quitea distinctive feature of my face :)

Good news about the eyelashes, I actually feel more worried about them than my head. False lashes just aren't practical on a daily basis for me and I LOVE a good coat of mascara! Also been practising with eyeliner for when they start to go.

Nice to hear a fairly positive story of Tamoxifen Mrs , how long do you have to take it for? My oncologist said 10 years for me which I was surprised about as had heard 5 generally, but she said they had just approved new funding to give for 10. I also have approved funding to have mri follow-ups every year until I am 50 because my tumour didn't show on a mammogram.

fresta I will have five years of hormone therapy at the moment. However, as I am now 51, the idea is that at some point in the next year or two I will go through the menopause after which they will switch me to a different drug. Tamoxifen is for pre menopausal patients. I have heard that the potential future drugs have a whole new set of side effects so I'll have to see. I will be asking about the 5 or 10 year treatment at a future point. My cancer is 8/8 ER receptive, I'm not sure if this affects how many years I should have hormone treatment.

I have been told that I will need to take Tamoxifen for ten years, but I am not so sure about this as I am 47and premenopausal. I would like to think I will be around that long anyways

Morning royal, I noticed you've been posting in the early hours again. Are you having real trouble sleeping?

I wonder how they decide how long the hormone treat should go on for? I don't know if it's a financial decision by varying health authorities, I hope not, or that different medics believe in different treatments. Obviously if I need something for longer than five years I want to be offered it. It's not something I need an answer to this week but I will enquire next time I have an appt.

Marshy, how are you this week, any improvement?

Hello mrs thanks for asking. I tend to sleep for about 4 to 5 hours non stop, but after that it is a lot of patchy sleep. When I have had enough of tossing and turning, I just get up!

It's so frustrating isn't it? I expect we've all had our share of poor sleep recently but when it becomes a long term pattern it's a problem. I have headphones and an iPod permanently under the pillow with a podcast to bore me off to sleep again. It usually works, music doesn't but speaking does, it stops me thinking and worrying in the middles of the night because I'm concentrating then I drift off. DH is away tonight so I'm hoping for an undisturbed night.

I did try and get help from an acupuncturist in the summer but that session all ended very badly, as I wrote about at the time. Back to the podcasts for me.

mrs it is VERY frustrating. I always cherished my sleep, but now I would be lucky to sleep 5 hours a night without interruptions!
Incredibly, I do not feel very sleepy during the day, and the fatigue I feel is th chemo kind which I have come to understand now. I think because I am rested in general, I am not suffering during the day a lot from the restless sleep.I have taken leave from work so no stress, only doing what I can and to my new pace, etc
Today at hospital as I was being made ready for my chemo weekly dose, I felt a very strange tightness in my chest and felt the urge to cough quite a lot. They delayed adminstering my chemo ( they had given me the premeds by now) till they checked my heart and all to make sure I was ok. Within an hour it had all gone and nothing unusual showed up in the tests they ran. So we assume it was just some reaction to the premeds, something I never had before, and they are still the same( nurse said there is always a first time)
Anyways, anybody else experiened chest tightness, coughs , etc ?

Hi all,
Many sympathies re poor sleep. Mrs...my pain in the bum aka sciatica is improving and I've managed to get to work this week but just so exhausted. I think coping with constant pain does that to you and of course I'm not sleeping brilliantly either. But it's definitely better than it was.

I've had a bit of an upset tum the last couple of days as well so I hope that goes away soon. I'm thinking it might be all the Ibuprofen I've been taking. Still at least the codeine isn't but bunging me up so...small mercies eh

Moan moan moan - that's me! Just call me Mona

Sorry to hear about the coughing royal, how are you now? Thank you too for sharing your chemo experience. I'm finding it worse than I had hoped; five more seems like a long haul. More positively, I've been keeping up with the physio as you advised and am much better for it.

I hope everyone had a better night's sleep if possible and that the sciatica keeps improving, marshy. And hoping Friday's dose may be easier than the last fresta.

Marshy I can totally sympathise with you, I can't take ibuprofen now. As since Chemo my digestive issues have been a nightmare! Which makes life awkward when you're in pain, but are limited to what you can take. See you are not alone in having a moan

As for sleeping.....what's that?! I haven't had a full, uninterrupted nights sleep since starting Tamoxifen! I can go to sleep without a problem, but then wake every few hours, and on a really bad night, I wake after just 2/3hrs, but feel wide awake! So can't go back to sleep. Oncologist gave me a weeks worth of sleeping pills, to try and get me back to a better sleep pattern....they haven't worked, I am still waking every few hours it's exhausting. Especially then trying to work a full day. But that's life!

I had my bone scan and SPECT CT scan yesterday. That was a long, tough day. The bone scan was okay to get through, but the SPECT CT of my hips/lower back, took 25mins and involved having my arms raised above my head. Which when you've had nodes removed and you have Lymphoedema, isn't much fun think it was about 5mins in when I realised how uncomfortable this was going to be. When it was finished I could barely move my arm, as my shoulder was so stiff! This morning I have woken with a very swollen hand. But it had to be done.

Anyway now I wait until next Wednesday for the results!!