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 never end up with a cushion cover. I did once try crocheting a lace doily, but it ended up as a hat. I don't know how. Don't ask me to knit, either

Meantime, a quick roundup of useful stuff from the oncology reports that I read

Good morning all.

Sleepy not at all. It is to your credit that you saw someone feeling attacked and tried to make them welcome on the thread

lozwil good luck with the GP today. I hope you get some answers soon. I hope all the drama hasn't put you off. I promise it is not usually like this!

I actually learnt to crochet during treatment as I couldn't knit with a cannula. I'd highly recommend it as a way to pass the time.

Sending good wishes to Mysillydog for her surgery today

I hope everyone has a good day.

Amber, it's fantastic to hear about all these new drugs but can I ask something? Are they all going to receive NHS funding? I seem to keep hearing about more and more cancer drugs being withdrawn so it's all rather confusing.

I was really sad to hear about David Bowie this morning. Cancer is terrible.

I would love to get my hands on some of those drugs Amber. I wonder how long it will take for them to get through NICE. Not too long I hope.

Leslie it would take more than a bit of drama to put me off. I prefer cross stich to crochet personally but never finish anything lol x

Sleepy I am also sad to hear about David Bowie, he was obviously a very private person and has obviously dealt with his illness in the same way it is amazing he managed to keep it out of the press hopefully they will leave his family alone to deal with their grief in private.

The NHS decides on each one, when it's past the 'trial' bit. People can apply to be on the trials, in the meantime, for many of the new drugs. Risks to any trial, of course. But keeping everything crossed that the newer ones will be funded.

Morning all. Bemused by the nanny shenanigans. Nothing else I can say. Had a terrible night and woke up feeling really ropey then threw up. Rang hospital and they asked me to go up to be checked. Just feel headachey and generally crap.

Very best of luck today mysillydog

Back later x

I'm being cheeky now coz i can :) I started painting pots and pebbles to raise money for BCC & LGFB at what has turned out to be an annual fundraising BBQ. It took off from there and now I have an Etsy page and I have signed up to do craft fairs this year after having a successful sale at my son's school fair. I was a Payroll Manager at a recruitment company which was very stresful & up to a 2 hour drive away from home so i am still not back there - they have me on half pay indefinitely on their insurance so I'm just keeping quiet. I'm hoping that this little hobby i have will turn into more and it is certainly a great distraction for me xxx

www.etsy.com/uk/shop/GoingPottywithSam?ref=hdr_shop_menu

Yes, very sad about Bowie. Always a very dignified man and stayed so right to the end. Lets hope the press treat him and his family with the same dignity and allow them to grieve privately as they wish.

I kept running the nanny situation through my head last night, and my final thoughts are that she clearly needs help, just not in the same way we thought. She seems to have almost a textbook case of Munchausen syndrome which needs psychological help. I hope she gets it.

Best wishes to you mysillydog with your surgery today.
Hope you feel better soon happy

I'm making the most of the beginning of the week and doing as much as possible before next chemo on Friday, which I'm really nervous about as don't want to feel sick. I was never really worried about the Tax, the EC sounds worse to me, although my oncologist said most people find it easier, I feel more worried. Anyway, trying not to dwell on it, instead I have some lovely little treats I've bought from E'spa to relax with and try to restore my horribly dehydrated skin with.

Hope you all have a lovely day everyone

Wow Alex, I love your pots and especially the pebbles! I too painted pots a while ago but only did before I got bored. You must have lots of patience.

Only did 3!

Beautiful pebbles Alex, you have a lovely eye for colour.

Good luck with your surgery Mysillydog- I didn't realise it was today.

Thanks Amber for links about trials of new drugs for BC mets. My oncologist has told me he will put me forward once I have exhausted all the currently approved treatments. At least now I have some names to throw at him.
Mrs and Sleepy glad you are still with us after Nannygate! I didn't receive any PMs (suspect I was seen as a less caring person than you both obviously are).
And I am now thinking of summer holidays ... a choral singing course followed by three nights in luxury B&B that seems to have won all awards going in the little town in Yorkshire that we stayed in over Christmas. Must get booking tonight to secure the best room for August Bank Holiday!
PS - thanks to Anon for the voucher - you should have seen my thanks on another thread, but thought I would just mention this as yet another example of the kindness of people on this thread. And maybe I may catch up with coffee with someone else here!

You're a brave woman Lily, booking a Yorkshire break for August bank holiday weekend. Did you not get enough rain at Christmas? We've been driving around a bit locally over the weekend and there are still huge areas of flooding, in some places you can't see where the rivers are supposed to be at all, just huge areas of flooded fields.

I probably got 7 or 8 pm's from nanny one day last week, saying she was going for an MRI and that it looked like she had lost her job as her boss had lost patience and asking me to defend her on here. It all sounded very plausible and worrying. I can't help wondering who she really is.

Fingers crossed for you lozwil

Started losing my hair; am moulting all over the house. Baby has just tried to eat some off the floor (tbh, anything not stuck down goes in mouth at the moment!)

Bloomin work taking me away from chatting today !
Sandwich sorry about your hair, some people shave theirs I was never brave enough
Mrs Rhod I also wonder who she really was and was taken in for a long time. I guess we will never know
Alex lovely pots :)
Silly dog I hope your surgery went well and that you are resting now
Lily glad to hear that you have holiday plans

Sorry not to mention everyone but hope everyone's had a good day and has a relaxing evening

Sorry your hair is going Sandwich. I'm going to book myself in with a hairdresser as soon as possible when this happens to me

I'm back from my surgery. I have a really sore frozen neck, back and shoulder. I don't have much incision pain but I have only a tiny amount of mobility. I can't stretch to reach for anything. I've reluctantly taken some codeine, along with preventative lactulose. I'm hoping the physio will have some ideas. The pain feels muscular but I guess it could be neurological. It's an ache rather than a sharp shooting pain. I think I'm going to be a very bad patient. So far I have got away with post op pain with other surgeries. I think my turn is now.

Has anyone else experienced this after node clearance? I have a sinking feeling the surgeon told me he had excised the surrounding area. Does that mean cancer had burst free of the nodes? I was too out of it to listen carefully or understand. My histology result will be next week and I'm not looking forward to it.

Mysillydog - please be assured that this is all normal! I am totally paranoid for hours after an anaesthetic , so I feel for you. The pain will be better soon , just take the painkillers for a while and hold on. Don't worry about what the surgeon said. I'm sure he was attempting to be reassuring!

Mysillydog, echoing the wise words of Sleepy.
If it helps, I'm happy that you have a surgeon who may have taken out a bit extra round the lymph nodes, for yours. I remember you had quite a big area of DCIS and cells. That means they are pretty confident that they got 'clear margins' first time for that bit (step 1 in getting rid of cancer). Then they'll plan to kill anything remaining anywhere else with chemo. And that puts you back on very good odds of a long life. You've certainly been through a lot over the last few months though. Take it easy. Lots of rest. Will be keeping everything crossed for the next results for you...and for everyone else waiting for tests, results, treatments and surgery

mysillydog hope you're feeling better this morning. Ref the hair I had it cut into a pixie cut soon after first chemo, which was definitely a good idea. Hats at the ready.

Morning everyone

Hope you feel better soon mysillydog, I suspect some of your discomfort will be nerve pain. I know when I had sentinel biopsy the discomfort was from them messing with the nerve, it was (and still is to some degree) like an aching tingle around the armpit area and down the underside of the upper arm and the back and shoulder. It will improve as things settle down I am sure, it's very early days yet. I too will be having full node clearance, it is the one part of my treatment I am most scared of, so I will be very interested to hear your experiences. How long will your hospital stay be?

I'm off to the oncologist this aft for results of MRI to check chemo response so hoping for good news.

Morning all...hope you are feeling better mysillydog and good luck today fresta
Am a good bit better today after my visit to the hospital yesterday. Seems like it was just a reaction to the chemo and to be honest I think I hadn't drunk enough fluid either. That'll teach me. Sleeping so badly though. My head is in a spin the whole time and keep reliving the day when I was diagnosed.
Meeting the plastic surgeon next week to discuss DIEP - still undecided as to what is the right option for me.
H x

mysillydog I hope you managed to get some sleep last night. I only had a SNB but it was the more uncomfortable scar, my breast scar was no trouble. Armpits have a whole host of nerves and it takes time to heal. It will feel very stiff and I remember feeling like I had a rough brick stuck in there. My best advice would be to do the exercises the physio gives you religiously. That way you will give yourself the best chance of recovering full movement.

fresta wishing you well for your spot thus afternoon.

Hello to everyone else.

Flipping auto correct - appt this afternoon.

Mysillydog hope you're feeling OK this morning, relate to the pain, had an ANC with my mastectomy (skin sparing) and the pain near my chest from the implant was only slightly worse than the ache under my arm.

It does get gradually better and I found the more I moved it the better it felt, only move your shoulders though, I did shrugs and rotations which eased the constant ache...

One piece of advice is if you start to get shooty nerve pains under your scar and on your arm, ask for Gabepentin (sp?). I had some prescribed as was told it worked wonders for nerve pain, I only took it at bedtime and it helped me sleep also which was a bonus!

It does feel like they've taken a huge chunk of "flesh" and it does stay numb, I can't feel mine still and i had my op in August but movement is much better and I have full movement, just feels like I'm carrying a loaf of bread around all the time lol.

Happy I'm planning to have a bx diep sometime this year, I've seen a plastic surgeon and the results they achieve are amazing, was all up for it post surgery but need to have radiotherapy so am waiting till that's over, have changed my mind numerous times and am still not 100% sure I want to do it, ask as much as you can they will explain all the risks but also how fab the results are..

Morning to all, hope those having chemo are coping, am a week on from my last one and am slowly surfacing from the fog, am very emotional at the mo songs trigger crying spells which is embarrassing when out and about.. but each day at a time! SG x