**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.

Welcome Salhal. Don't panic about the delay for your op. My breast care nurse was very reassuring that things were unlikely to change in that amount of time. I had the sentinel node op first and was told two week recovery but I didn't have the lumpectomy (had BMX after chemo). I would imagine it will be at least two weeks before you can drive after op.

I took up all offers of help and didn't try to cope by myself. Once you start you'll get an idea of how the treatment will affect you and it is easier to plan. I wasn't able to work during chemo due to nature of job and risk of infection but there are lots of people on here who have been able to.

Hi salhal, well done for posting, I hope we can make this a bit easier for you. I had exactly the same op as you're having last May with exactly the same size tumour. It's a bit late now, just wanted to say hello, but I'll be around tomorrow if I can help.

I'm about to go to bed but just wanted to say hi salhal, it all seems very daunting at the start but you'll be fine and we will help you every step if the way

Thanks everyone. I am going to try and sleep now too (although that is pretty elusive at the moment, I am working my way through season 1 of Nashville as a sleep aid). Hearing about everyone else's experiences is really helpful.

Hi Salhal, and welcome. If you are having trouble sleeping I'd recommend a trip to the GP for sleeping tablets. At times like this you are justified in grabbing all the help that's on offer, and getting a decent night's sleep will definitely help you to cope with what is going on in the day times.

Lots of love to you and yours - I am around your age and also have small kids, as do others on here, and though it is tough to get through treatment with small DC making demands on you as well, I have found my 2 daughters to be a source of unimaginable strength and comfort. And keep posting, the awesome women on this thread has saved me so so many times this year x

Hi,

I'll start with a hospital list as sometimes it's reassuring to feel like you can prepare physically even though mentally you are still at the 'fingers in ears, going la la la, denial stage' (or was that just me)?

I found the following really helpful for hospital:
Dressing gown (fluffy)
Slippers
Electric toothbrush (minimises boob wobbling)
Soft supportive bra (no underwiring, no lace but with full cups)
Bra extenders
Sleep bra
Pj bottoms/vest tops that you can step into and pull up
Dry shampoo
Deodorant wipes (you can't use normal deodorant on the affected area for a while)
Phone and charger (with an extra long lead
Boiled sweets
Cartons of Ribena
Small sports bottle of water
Lip balm
Light book/magazine
Simple snacks (like a cereal bar)
Notebook - you will be given exercises to do and may get home and not remember much about them!!

Holding a pillow against the affected area makes for a more comfortable drive home.

The best purchase we made for home was a v pillow which makes sleeping so much comfier. Dunelm sell a fluffy one which is very comfy. Also Andrex moist toilet wipes are handy for making you feel more socially acceptable if you've not yet managed a shower. Vest tops you step into and zip up hoodies and cardigans will make dressing so much easier.

A sentinel node can leave you with off, shooting pains down your arm and numbness. It is all bearable and you will probably be able to take paracetamol, ibuprofen and/or codeine to make it nothing more than uncomfortable. Just be prepared for bits feeling like they might drop off. They won't!! Codeine can make you a bit spaced and constipated so only take it when you need it.

Please do your exercises. They will be frustrating and uncomfortable at first but persist and within a few days they will become so much easier. Four weeks after my op my reach was back to normal whereas I've heard of women who didn't do the exercises having problems months later.

Above all, remember that you will recover a little each day. At first, you will be frustrated, but be kind to yourself. Potter around a little but avoid lifting. Sleep when you need to (I was going back to bed during the day which is unheard of). Don't vacuum, cook, iron or clean for a while. I didn't drive for a couple of weeks, maybe 3, but I was able to walk to school after a week. Have friends over for coffee/let them bring lunch. Before you know it you will be back up and running. I looked better for the break from the headless chicken routine.

I'd allow yourself a couple of weeks off. I had one week and then worked from home on a laptop. The distraction was nice but I was still a bit uncomfortable and I wasn't great at concentrating.

I hope that helps. I'm happy to answer any questions so feel free to private message me if you don't want to ask on here.

Welcome salhal, sorry you've had to join us.

I had a WLE and sentinel node biopsy just over 2 weeks ago. I'd had chemo first so am now just waiting for radiotherapy appointments to come through.

I'm glad you've made contact with your breast nurse, most people on here have had a positive relationship with theirs and are able to get the advice and support they need. my team are obviously overworked as you can never get hold of them, I'm still waiting a call back from a message left first thing Tuesday morning :(.

I'm older than you but have a 7 yo DD. she's obviously more independent than your DC but is fortunately still too young to understand what cancer really means. she seems to have coped with everything amazingly well although burst into floods of tears when she heard my hair would fall out :(

I hope the waiting doesn't drive you mad and that you can get some sleep. its so very hard but once you've started the treatment you will be well on your way

Hi salhal, did you manage to get some sleep last night? You'll find we can all help in different ways. I had the same op as you but I'm a bit older, 50 with dd of 18 & 21 and a DH who works from home. I don't work so can't advise about time off. I guess a lot will depend on the nature of your job.

I was treated as a day patient, in at 7.30 and operated on mid morning. I was home again by about 4ish, bit vague there. How you'll feel afterwards will depend largely on how you cope with the anaesthetic. I was a bit groggy for a few days but did not have too much pain. I just took basic painkillers sometimes, particularly at night to get comfy.

You will probably have a big see through sticky dressing on. You're not supposed to get this wet. Ha, fat chance. I was showering very carefully the next day and two days later washed my hair too, not easy when you can't lift one arm properly but I was expecting visitors and I have my standards! After 4-5 days of that it was coming away at the edges and I popped back in to the ( very local ) hospital to have part of it removed.

You won't be able to lift for a while, which is a bit of an issue with small children so take all the help that's offered. You will feel very protective of your sore side, I was a bit wary in public of people walking into me. But we cope with so much. We had our kitchen ripped out two days before my op, which was challenging, but we'd planned it for so long, I refused to postpone it. It was chaos of a different kind to little ones, but we managed. As dd1 was home from university she was very happy to drive me around so I didn't drive for about five weeks but I know I could have done it sooner. Others certainly have done, after a week or two.

If there is anything specific about the op that you want to know, please shout. I also had rads, but no chemo. Others will be able to help there.

Hello to everyone else. Elporto, you must be feeling great to have finished chemo. Are you having rads too or is that it?

I love all the positivity on here - or is it stubbornness? ! Mrs with your new kitchen, elporto your holiday to Australia... I took part in a 50 km charity walk 3 days after I was diagnosed as I'd spent 3 months and over 300 miles training for it. I just feel that cancer takes over so much of our lives but I'm determined not to let it take ALL of my life.

salhal, for my surgery I was in hospital at 7.15am, had a guide wire inserted via ultrasound (my tumour was too small after the chemo to feel) and was down in theatre at about 9.30. back on the ward 3 hours later and home by about 6.30pm

I drove 8 days later and found it generally ok. I went back to work 10 days after the op which meant unfortunately I started to forget to do my exercises so I'm still quite sore in my armpit and can't straighten my arm up properly. will have to try extra hard from now on I think....

Keep walking that wall, Minty (or keep your chocolate on the top shelf to make you stretch)!

Funny you should say that saveme, I use a specific glass every morning when I take my tamoxifen and I keep it on a high shelf, in my lovely new kitchen, to make me stretch.

Hi Salhal, sad you're here but good that you found the lovely people on the thread.
If it helps, a 'grade 3' lump is a good sort these days, because it is thirsty and drinks a load of chemo and cops it. The slower drinking ones can be harder to poison.
And the small size is also a good thing. Do update people on other results as you get them.But so far it looks like you have a very good chance of it all working fine for you. Treatment isn't fun, but it's definitely doable for nearly everyone. The early bits of eek are the worst, really. It also won't make any difference to your odds of success if they leave surgery for three weeks. It's also completely impossible to die from cancer in the breast itself. So once it's removed and the team have done their job, all should be OK for you and your youngsters. Even if it gets into other bits of the body, these days treatments can convert it into a long term nuisance for most people. And you'd know if you were about to cop it from cancer anywhere else, without medical help so far, because you would have been terribly ill... and in huge discomfort and really struggling, with it all getting worse and worse. If that helps...so if you have been pretty fine, you really are pretty fine.

Thank you everyone for such a warm welcome, sad that we all have to be here.

Amber the only other info I have is that it's invasive ductal, oestrogen, progesterone and HER2 negative. My one big question for the consultant was "how do I know I'm not riddled with it?" So your words are reassuring.

One of my best friends had breast cancer 5 years ago and my mum had bowel cancer last year, so this is not unfamiliar territory for me but of course it's totally different when it's happening to you.

Thanks saveme and Mrsrhod for great pre and post op advice. I'm also having the guide wire in the morning (as the consultant struggled to find my lump) and I'm down for an afternoon op. I had my pre-op last week in case they have any cancellations, which kind of brought home that life is going to involve a lot of waiting rooms and a lot of being stabbed with needles over the next few months. In fact that day has been the bleakest day so far. Most days I'm pretty positive.

Elporto my kids are crap sleepers so I still get up with them most nights, I'm worried I wouldn't hear them if I had sleeping tablets. You are right though being tired makes everything much more difficult to deal with. I'm sure though that the kids are going to be a big help in keeping me going.

Minty, bless your DD for crying when you lost your hair. I hope I don't freak my 2 out. DD (4) has said that she wants to choose my wig, which got a big fat no from me as I don't want to spend the next few months looking like Elsa from Frozen!

Right it's been a busy day buying DS a new bed from ikea, eating pizza and then building said bed. It's good to be busy right?

Night all.

Busy is definitely good. As is pizza. I think you'll do just fine

So sorry Salhal that you have had to join us

Evening all.i found being busy good Salhal.

Did anyone else suffer with aching joints a while after finishing treatment? I don't know whether it is being more active now am back at work for a couple of days but am waking up with the joints in my hands very stiff and achy. My hips and knees are also hurting. I am of course now convinced that something is amiss! Maybe I am just getting older.

Had a letter from hospital which states that my ejection fraction has not gone back up significantly this time so I guess that means no more Herceptin for me. Am hoping it won't delay op though. I guess 4 doses is better than nothing.

Thinking of everyone

Fellow Tamoxigangers.
Some of you already know about the proposed Woolly Hug for Beccajoh's family and have offered assistance. This is now going to happen and details are here
For non-knitters there is the opportunity to donate some money towards wool via PayPal
Let's hope that Becca's family will soon receive a cuddly Woolly Hug full of our love.
Lil

Thanks Lil, I cannot knit but I can donate a few £££ towards costs.

speedy I think aches and pains are common, are you on Tamoxifen? I know some people says that can cause aches.

Thanks Lil, also can't knit but will donate.

Speedy, I can hardly walk in the morning (and if I sit still too long). My oncologist wasn't worried at all. He said its very common if you are on tamoxifen but even if not, a drop in oestrogen can cause achyness.

Hope everyone else ok.

Hi salhal, a big welcome from me too. I can't give you any specific advice about your op as mine was different, but you have already had lots of great tips. I will reiterate the exercise mantra - I was another one who didn't and am still stiff and restricted 9 months later. I am trying to rectify that now. Chemo is no fun but I did manage to work 2 weeks out of 3 and perform in the Summer season at our local theatre - both with a lot of support from everyone around me. I think having a focus on something apart from your own recovery probably helps, and I am sure your two LOs will provide that distraction.
lily I am on it, wanted an excuse to get the knitting needles out.
speedy I am also suffering from painful stiffness, in legs and hands. I think the good news is that it isn't anything sinister, the bad news being that we have to put up with it for the next few years!

Thanks for replies.
Foo- am not having Tamoxifen. Wine- interesting about drop in oestrogen. My periods haven't come back yet so maybe that's it. My onc thought they might as 41. Sorry that you and Buns are also stiff and achy. What a joy this is!

Lily. Might attempt to knit but if that goes badly then will donate. I can only do a simple stitch.

Speedy, I'm really suffering from stiffness - in the morning, after sitting too long etc. and no tamoxifen for me either - just herceptin now. I've just turned 47 but chemo crashed me headlong into the menopause and I'm suffering with all the classic symptoms. At least I assume that's what's going on! It's definitely no fun.

I'll see if I can look out my knitting needles and make a square for Becca, thanks lily for getting in touch with the woolly hugs ladies

Thanks Lily I can't knit but will donate

Night all

Thanks for the welcome speedy and considerably.

considerably good to see that you worked through chemo, my DH thinks I should give up work not least because I have a policy that will pay out a sum every month (less than I earn now but more than I might earn if I'm off a lot) if I can't work due to sickness. I'm self-employed so its complicated as if I don't work I don't earn but I don't want to give up work, but we do need the money too. I want to see how I go on and then decide. Anyone else managed to keep working through chemo? My job is computer based and I can work from home so I think its doable.

DH has been so supportive but this week we are arguing in lumps! Think we are all tired and stressed. I shouted at the kids this morning and yesterday morning so not good. Hopefully once I have the op and start getting on with it things will be easier. It all streches out in fron of you a bit at the begining doesn't it?

Hope everyone's aches and stiffness aren't too bad today.

Back to work, should be earning money while I can!

Salhal
I continued working, to some extent, during chemo. I have a 2 hour commute each way to work, which was the main reason I didn't work more. My work continued to pay me in full and employed an assistant to be there full time whilst I did a lot of work from home.
Unless you are superhuman, expect Week 1 of the cycle to be pretty debilitating. I had difficulty even reading stuff on the computer at home those days. Weeks 2 and 3 aren't so bad, but you will have less energy than normal.
I only had Tax (no FEC) if that makes any difference!