**Tamoxigang thread 51**... no more sangria, but maybe some mulled wine!

[MarthaCostello]

Hello all,

The old thread has nearly run out so I hope no one minds me making a new one. And am I allowed to mention the Big C... Christmas?! our last thread was started in July so I reckon this one might take us into December.

In honour of that, I will lay out some mulled wine, mince pies and I have wrapped myself in tinsel.

A warm welcome to jomidmum, but sorry you've had to join us. No one wants to be in this club, but this thread is a rather nice place to be. Wishing you a speedy recovery from your op, and hoping the pain eases soon.

Massive hugs to beccajoh

A big yippee for Marshy, what utterly fantastic news.

Sitting on the paranoia box for ConsiderablyBiggerBuns, I hope your MRI results are good - when will you hear?

Waving and sending love to everyone else.

I wonder if seeing as we are on a new thread, it might be worth just giving a bit of history for new posters? I will put mine anyway, and then others can if they want to. I am coming up to two years since my bowel cancer diagnosis (grade 2, stage 3c, T2N2M0R0). I had major bowel surgery and six months of chemo.

Bloody hell! Typed a long post and then my phone gave up before I could send it.

So nice to see everyone. Waving at Kitkat and very excited to hear about your new nipple - can't imagine another set of circumstances in which I would be saying that ..... I may come back to you on that sometime if you are around kitkat as I'm considering my options and may consider stick on ones first, just to see how it is to have them again.

I'm not gonna post my profile yet as I still can't quite get my head around the outcome of the phonecall yesterday. I'm in a weird state of mind at the moment.

Love to all. Hope you are ok becca xx

X posts foofoo. Yay to that.

Thanks Kitkat will certainly look into it. I felt I could cope with the hot flushes but have been suffering badly this week. Really need to sort it out before I return to work.

hi Marshy - I can PM you a pic if you want (I'm kind of proud of it!!).

Mummy - yes I thought I could cope but I felt it was really affecting my mood at work and making me very erratic, plus I was so exhausted in the evening my kids bore the brunt of things.

That would be great kitkat if you wouldn't mind. What tissue did they use to create it? Also,are you having further work on your other side as I thought that was done? Sorry for nosy questions - feel free not to answer!

Found you all :-).

I was also diagnosed on 8th July this year (waves to Elporto) with 3cm grade 3 HER2+ IDC. No official staging yet but suspect its stage 2. Having chemo first and currently fighting extreme exhaustion after my 4th lot of EC last week. Starting 4 lots of accelerated paclitaxol and herceptin the first week of November so hope to have chemo out the way by Christmas. The tumour is shrinking so hope to get away with lumpectomy and SNB in the new year followed by 3 weeks of rads. Awaiting an appt for another CT scan as first one showed 2mm nodule on my left lung but drs don't seem worried in the slightest. I could do without it though!

Am currently managing to work for about 8 days between each cycle (largely due to my pathetic sick pay policy at work) but don't think I'll be doing that much longer....

Brain still hasn't got anyway near to even begin to accept I have cancer so dark times are ahead I fear when the penny finally drops.

Anyway, I'm thinking of all of you who are finding it tough right now and am celebrating quietly with those who have had good news and are enjoying the moment.

Have just found this new thread :) It's tremendously helpful to see people's diagnoses, as it helps me make sense of their posts. I am in awe of what you have all been through and coped with. I'm just at the start of my journey. I have 1 grade1 breast cancer lesion on one side, abnormal nipple, showing signs of Paget's, then 1 grade3 on the other side of the nipple. I haven't had the bone scan yet and am feeling actually very nervous, also about some of my moles. I'm 44. I have two autistic children 6 and 8. Husband has depression. I can't get sick!

becca I want to give you a big hug, it is totally shit that this has happened to you. I haven't got any wise words but I just hope that some of the resilient people on here will help you find comfort and peace and purpose and that you are around for a good long while yet.

Marshy, I was really happy to hear your news. :)

I have opted for chemo first then a masectomy without reconstruction (as I have a stupidly high BMI and I want to slim down before thinking about getting a new breast) and then possibly radiation. My cancer hasn't been staged yet but they think it is 2. The initial biopsy of my enlarged lymph node was clear but I haven't had a sentinel node (?) biopsy yet. I have been told I will definitely lose my hair so I am going to have a pixie cut. I just wish I wasn't so large as I am not sure this is a look I can work! I feel so ashamed about my weight and being weighed and measured all the time with remarks in my notes about my BMI. I'm finding it really hard to eat healthily. I could if someone would just put it in front of me but I have the opposite problem coaxing my family to eat! Nobody will eat the same things I haven't time to cook meals just for me.

I'm also ashamed of how hard I am finding it to give up alcohol or limit it to just one glass. I have lapsed and gone over my units a few times (it isn't difficult!). I have been told so many things about diet and I just long to comfort eat and hit the wine to relax. I know I sound whiny but I need to be all cheerful and positive for my family so I am showing the least attractive side of my personality here I suppose! The good news is my mum will be around for a while (they don't live in this country) to help me through chemo but at the moment she is away with my dad enjoying a much deserved holiday. I'm so glad to have found you all :)

Momoftwo, feet and peripheral neuropathy - do get opinion of the team. Suspect it's that, but they can do the right tests.
Snowflake, do let local autism charity and (if you trust them at all) social services know that you're having all this lot, and are herding two fine young autistic folk through life. You may well find there's sources of help and support out there. Likewise Macmillan may be able to help you put together support. Don't think you have to do it all yourself. And sod trying to give up wine right now. Just don't go wild with it. [this is not medical advice from an expert - just a personal opinion from someone with a whole family of autistic folk who reckons a glass or two of wine got me through some days]

snowflake my BMI is pretty darn high, and I love a glass of wine
I don't know if this will be good or bad news but main concern wrt surgery was the weight around ones neck. I am lucky in that area and anaesthetist just said I was a tad short. It won't stop you having surgery but for me it meant I could have it at my lovely local hospital and not the big horrid one! It's v easy to put weight on during chemo. So don't worry too much.

My stats:
Dx beginning of March 2014 after finding lump several weeks before I went to doctor. Likely that cause was radiotherapy treatment for Hodgkin's disease in 1985. Had BMX (RHS was elective) in April. Lobular cancer identified in left breast, biggest lump was 22 mm. DCIS identified in right breast ( right decision to elect to have it removed). Can't remember exact figures but evidence of cancer in nodes and so had full node clearance - 8 out of 14 (?) affected. Started chemotherapy in mid June 6xTAC, finished on 30th September - yeah! Am expecting to start radiotherapy in a couple of weeks (not straight forward due to previous rads for Hodgkin's), with reconstruction surgery next years. I am due to start tamoxifen in the next few days but was waiting for my chemo flushes to stop, first. Have neuropathy in fingers, toes and nose(?), which is more uncomfortable than painful and am hoping will get better over time. I have just had a liver MRI for suspicious spot on liver and have also tiny, tiny lesion on lung, which my oncologist is going to leave and see if it gets any bigger!
I' m 49 with 2 DDs, 15 and 13 and a very unsupportive husband. My Mum had a stroke during my chemo, she is back home now and making amazing progress but still needs a lot of care, which can be tough and tiring.
This thread and the lovely ladies on it have kept me sane, so much real life experience, tips and support.

Snowflake am also a larger lady and no one has told me to lose weight or give up alcohol. I couldn't have done either during chemo it was a case of whatever gets you through the day really. Now I've finished treatment am trying to lose weight. Don't beat yourself up about it

Snowflake, my lovely Onc said wine is good for the soul, and no need to cut it out. But to drink sensibly.

I also struggle to stick to just one glass and often exceed weekly guidelines (but not by a huge amount).
What works for me is decision to have 3 or 4 no alcohol days.
I also started to drink peppermint tea or decaf tea at the times I'd usually have a glass of wine.

snowflake my chemo nurse told me it was fine to have a glass or two of wine, unprompted. I have certainly taken her up on that suggestion, although have found I have gone off it for longer as the cycles went on. I have put on about a stone during chemo - partly from constantly eating to get rid of nasty taste in my mouth, but have had a lecture from rads nurse about not trying to diet during any of the treatment.
Losing your hair isn't fun, but you do get the chance to try out lots of lovely new styles, so if a pixie cut isn't for you, comfort yourself that you can be rocking a Cheryl, or a Cher or a Shirley temple.
becca how are you today?

Checking back in at the mention of mulled wine . Love it!
Don't know that many on the current thread. I was diagnosed just over 3 yrs ago. Lump removed. Radiotherapy and now just on Tamoxifen. Had my check up with oncologist 2 weeks ago and she said - "looking good - see you in a year" - so great news.
Glad to see this support thread still going though

Chemo destroyed my finely honed wine appreciating taste buds. Even now, a year on, I don't enjoy a glass of wine as much as I did. I still like a glass of beer and am very keen on Aperol Spritz and such like (cough medicine type drinks).
Oncologist warned me off cake. But I have bone cancer so need to keep weight down (and Oncologist has recently lost weight himself and therefore feels righteous!)

Backforgood, hello. I was so pleased to see your comments. I was diagnosed back in May with a small lump and have had exactly the same course of treatment as you. This thread has been fantastic but there has not been anyone here recently who has had the same experience as me. I havent needed chemo, for which I'm very thankful, but in a strange way that worries me.

Can I ask how you feel now, three years on? Is it still terrifying, is it still the first thing you think about when you wake up?

Morning all
Just come back from Herceptin injection. Anybody who had a BMX or BMX with reconstruction find they had one side much more painful than the other side? I sometimes find it really hard to get comfy and it's throbbing now even though I have had painkillers. Waiting to try and get more codeine from the doctor.
How long is it ok to take painkillers for? I avoid taking them normally.

Becca- hope you feel a little better today.
Backforgood. That's really good news.

Hi speedy I've found my left side (where I also had lymph nodes out), has taken much longer to heal. I still can't lie on that side and it still feels more 'bruised' on that side (I had a bmx, no reconstruction, in May).

Hope you're feeling better today becca

Speedy - I'm having a lot of pain in both sides and I'm five months post-op. It's especially worse at night and it's agony to turn over in bed. I'm also taking codeine but have made an appointment to discuss with my GP. Oncologist said it could be nerve damage from rads.

Hello MrsRodGilbert - it was strange not having chemo... I carried this feeling of "guilt" almost for ages, feeling that I hadn't 'been ill enough' despite lots of lovely sensible people (on here, and in RL) trying to give me a good talking to.

I do know what you mean about not having chemo though. Because, generally, it's the chemo, rather than the cancer that makes you feel awful, then (in my mind anyhow) I felt that it must do the most good as it's the most awful thing - in a 'no pain, no gain' sort of way.
Of course it's a load of rubbish - the specialists will give you the treatment needed to sort your cancer, but cancer does tend to play with your mind and you do think odd things.
No, it's not the first thing I think about at all. I can go for weeks without thinking about it. I do bring it up, and mention it in conversations, but that's only to prompt as many other people as I can to check themselves for lumps or blood in urine, or lingering coughs, or change in body shape, or, quite frankly, any other unexplained change in their bodies.
I feel very blessed now - don't know if it's appropriate to say that?

I had loads of lovely support from the ladies on here at the time, but it was a bit odd that I didn't seem to be going through as much as some of them.

Ask away if there's anything else I can say.... not sure what. Just that life is great

Thanks Speedy

Thanks wine and wee. I haven't had rads but the side that hurts most is the one that had the cancer so maybe there was more 'delving'. I'll try and find out when drains get removed although not sure who does that bit.

Hi ladies, I'm feeling a bit more positive today thanks. Had a pretty poor weekend of floods of tears because of an onslaught of nausea, being sick, loose bowels, joint pains. Oh and my period, just to add to the fun I've been at the hospital most of the day. They think it's part side-effects from my meds (prescribed anti-sickness), part period playing havoc with my hormones, part exhaustion and a dollop of stress on top. My consultant wasn't available today but back tomorrow so they're going to relay all the info to him and see if he wants to bring my next scan forward or not. Last time I was sick it was because the cancer had spread. I'm not nearly as sick this time thankfully so I'm trying to keep positive.

My mind has been to some very dark places the last couple of days. Yesterday morning I was pretty much set on packing it all in and giving up now.

The rest of my post disappeared!

Sorry you are both uncomfortable still. Wee- that's not nice that you can't turn over without pain. Hopefully the doctor can help.

Becca- glad you are feeling more positive today and hope your consultant will help sort things out for you.

Thank you backforgood, everything you say is just how I feel. I do feel guilty for not being ill enough. Apart from after surgery and some pain towards the end of rads I have felt well throughout. After an initial flurry of concern from friends I have found that people don't ask how I am now. I look normal, feel normal, but my head is still catching up.

I won't see a doctor until February and have an appt with my bc nurse for September next year. I had a mad three months and now nothing. It's very strange. I'm absolutely not complaining and I know what you mean about feeling blessed. I long for the time when I won't think about it for weeks.

I know some people on here are having a dreadful time at the moment so it would be inappropriate to go on, but thank you for replying. It's so lovely to have found someone with such a similar experience.