*TAMOXIGANG* All the fours...44!

[GoodbyeRubyTuesday]

Apologies for the bingo reference, couldn't think of a witty title but the other thread is very nearly full.

In honour of our new thread I have piled extra apple pudding on the trolley so tuck in :)

I also had a short walk yesterday Betsy but just over 1 mile in the Shropshire Hills (quite steep and muddy) with rain pouring down, was quite enough for me. O(ur weekends away are usually walking weekends but have now regressed to mooching about weekends!

Has anyone got a suggestion of what to do about my fingernails (or rather the space underneath them)? Because of the Tax they are now lifting a bit, and though they look fine as I have put polish on, they smell, underneath, like Stilton that has been left out too long! I'm thinking of soaking them in something like dilute TCP in order to clean under the nails and get rid of the smell. I don't want to do anything involving nailbrushes as that would lift them even more.

Hello all, just popping in to say hi. No news here, just waiting for first meeting with onc on Friday. I did wake up this morning thinking the gales hadn't been that bad, until DH told me we had a large marquee in the garden. This had flown over from the garage which is three doors down from us, must have flipped mid-air and landed on top of the kid's swing and my greenhouse.

Lily I have no advice about nails I'm afraid, but wait for words of wisdom from others here as I'll probably be asking the same thing in a couple of months!

Lily I haven't experienced that yet so don't know what to suggest but I'd keep an eye on them that they don't get infected

Betsy it's frustrating isn't it but I guess fitness levels will return in time hope you're having a nice break anyway

Very quiet on here where is everyone ?

dolly if she's having only a partial bowel removal (I assume they're taking her whole colon though?) then she shouldn't have quite as severe side effects as I've had (I've had my entire colon and rectum removed) so I won't go into details and scare you!

Has she had genetic testing to confirm the FAP diagnosis? Or do you have a family history? The geneticist will be able to advise you on which specific symptoms she is most at risk from as it depends on the location of the mutation within the gene, but if they've caught the colon polyps before they became cancerous then that's the main thing. Colon cancer is a certainty in untreated FAP but all the other conditions are just possibilities :)

Anyway please feel free to ask me anything else you need to, am happy to help. You can PM if you prefer.

Waving to everyone, off to yoga in a mo x

Hi All

Think it's time to take my head out of the sand and face up to the next part of my journey. Been a rough few weeks, but I am feeling a bit less emotional and a bit more like 'me'. So annoying, as I was determined to enjoy a couple of weeks without hospital appointments. Instead I spent a couple of weeks....................?????? Well it'll sound stupid, but I suppose I was grieving for my best friend! Not so much the losing 'her' but grieving the gap she has left!? If that makes any sense?!

I was angry at her for not being here to help me through this. Then angry at myself for being so horrible. She didn't choose to go I think I have just got so used to her always being there for me, and now she's not and I felt a bit, actually very, lost without her.

So now I face up to reality, which is I NEED to get through this without her, and although I have days when I think that's impossible. I know it's what she would of wanted. Giving up isn't an option.

So next step on my journey is....

I have an appointment with the Oncologist on Wednesday. Hopefully I will find out what Chemo I will be having, and possibly when it might start.

If any of you experts are around, I would really appreciate an idea of what questions are useful to ask, on your first appointment. I always manage to think of 100 questions AFTER my appointments are over. I started to make a list, but can't really think of anything that I might need to know.

Apologies for the waffle, and sorry if it didn't make any sense.

Hope that those of you who've been having a rough time, start feeling better soon.

I will try and keep up with what's going on now! No more going A.W.O.L and feeling sorry for myself, I promise!!

Xxxxxxxxx

Really lovely to have you back. Of course you miss your friend and wish she was here to help you through this, and it's only natural to feel angry -she was taken from you and her family and friends too early and life can be shitty and cruel and unfair. It's right that you work through your emotions, and that includes being angry and scared and upset. No one will judge how you feel - she has left a huge gap in your life x

Our treatments are lining up together again aren't they? I have no idea what to ask the onc on my first appointment this week either (apart from when are you planning to start poisoning me?). I'm also still really sore from the node clearance, so I hope I get some more healing time before the chemical nasties start. Are you all healed up now from yours?

Hi Lily, my sisters BCN recommended to her to use nail strengthener.

Her nails didn't lift though.

Your chemo nurse or BCN may have a recommendation.

Hi handbags yes I'm all healed I was starting to get a bit of cording. But I carried on with exercises and stretching/massaging area, and fingers crossed. It seems to be sorted.

I have really good movement in my shoulder, which I am pleased about. Hope yours starts to feel better soon. Can't remember when you had your surgery. But I found the worse pain. Was around days 10-14 post surgery. But I am sure it's different for everyone.

Take care xx

Lily I hate to say it but if you are getting a smell chances are there's an infection :(. I would contact the chemo helpline or your GP for advice.

Morning all
How's everyone today ?
Really glad to see you back I had a group information session before I started chemo which told you all the side effects etc and when you need to seek help, do you have anything like that ?
Lily hope you get your nails sorted

I need to go food shopping today, the cupboards are bare! Then meeting a friend for tea later.

Hi malt thanks, it's good to be back

I'm not sure if my hospital offers anything like that, but I suppose I will find out tomorrow!!! I was feeling very relaxed about tomorrow's appointment. But now I have major butterflies in my stomach. Maybe it's the sudden realisation that the Chemo isn't just a word now, but that it's actually going to happen

Hope you are doing okay? Good luck with the food shopping, and have fun with your friend.

I'm housebound at work with a sick child. Typical how they wait for the holidays to get sick!!

Hope everyone has a good day xx

Hi all, just a quick in and out from me as I won't be around for a day or two.

Have to be at hospital for 12 tomorrow for MX and recon. Feeling scared but just want it over now. Then the wait for results, of course.

Good to see you back really and hope it goes well for you tomorrow. My armpit is still sore and def have some cording but I think (hope!) it's improving with the stretching.

See you all soon

Oh malt I'm in the west midlands. The storm was a non event here

GOOD LUCK for tomorrow Marshy will be thinking of you and sending lots of positive vibes. Xx

Good luck to Marshy for her op. Not yet done anything about the nails as I managed to fall asleep at 5:30 yesterday! That's what 6 lots of Tax and a weekend away does for you!. I will discuss nails with a friend who is a nurse (if I stay awake long enough).
I'm also waiting to hear from Oncologist whether I should have the portacath removed now, or not. If it stays in it will need to be flushed every four weeks, but I have to go into hospital four weekly for a bone injection.

marshy all the best for tomorrow. I know it's very scary but let's of people have been through it successfully.

Going to try a walk today, was doing 4 miles through start of chemo but don't think I will manage that today.

Will stop for tea and cake

Good luck for tomorrow Marshy and Really.

I've not had the best of weeks - think my body has decided it's had enough now . Thankfully the new meds have controlled the diabetes symptoms but the SE of the meds are not pleasant. Also BP is sky high and I can't remember when I last had a decent night's sleep. But hey ho nothing I can do - number 5 tomorrow - am more worried about the steroids then the chemo which is wierd I suppose.

Good to see you back Really and good luck tomorrow Marshy.
Had a chat with my BCN earlier, the 2nd biopsy taken from my left nodes did show malignancy, which I was expecting.
However, it does look as though my chemo can be done under same oncologist privately, so think I will. Means I will get a portacath and some other stuff.
Taking my mum away to North Berwick (lovely coastal town outside Edinburgh) this weekend. V looking forward to it.

MumofTwo - hope your operation went well today. I had my pre-op appointment last night and it made me a bit nervous, please tell me it will be okay. I need to have a port-a-cath, so it has got to be done.

Really Sorry to hear that you have had such a rough time lately. I know it will never be the same as having your mate here, but I know we all will do our best to try and get you through this. {{{Hugs}}}

Marshy Good Luck for tomorrow.

KitKat Did I read correctly that you are having chemo every week?

Weebarra Sorry to hear about your diagnosis. Don't blame you for going private - you pay your premiums, so if your not gonna use it when you have the big C, when will you?

I can't get Weggie's post at the end of last week out of my mind. I think it is because I was told that day I had TNBC. Does anyone else out there have TNBC? Can I ask what you were told about it, if anything.

Amber - Slap me - I have bloody googled TNBC. Do you have any positive information or stats about TNBC to help me feel a bit better?

Tiny - yup, I have TNBC and that post did upset me a bit! I suspect that our prognosis is not quite as good as those with hormone +ve BC but I actually had a chat with my BCN today and she did make me feel a bit better.

Tiny and Weebarra - am sure Amber will be along soon to reassure you but my understanding is without chemo TNBC is tricky but it responds well to chemo and that will make the prognosis more similar to ER+ BC.

Tiny - yes I am havoing weekly chemo but that is becasue on FEC I didn't do very well so my onc thought that if I had the usual 3 weekly docetaxel regime I would not manage 3 cycles. So he suggested a weekly low dose of Paclitaxel (just another Tax) as he thought it would suit me better. And he was correct - I only get the odd day when I am knocked out so it allows me to function fairly normally most of the time. Of course it would not suit everyone as it is very time consuming to do bloods and chemo every week (but it is all done at home).

I don't have TNBC but that post upset me too, I'd like to think that she didn't mean it to come across the way that it did

'Evening all!
Triple negative, eh?
Funnily enough, it's not as bad as people think. The overall survival is only a few percentage points different to the other sorts these days, especially for people who are from sociable well fed families with good medical treatment.
And Triple Negative tends to only be ruder in the first couple of years. If people get beyond that, it runs out of steam faster than the other sorts.
Plus they have just found a new drug target that is stopping it (a cystine targeted drug) so are entering human trials soon with that one. Should have a decent set of results on that within the next year or two, then it'll be more open to people going on it if theirs has misbehaved.

And yes, it hates chemotherapy. So a good Onc will whack it with a few sorts until it surrenders.
It's not one of the easiest to deal with. I'd recommend the full Vitamin D, curcumin, lactoferrin, omega 3, blueberries, raspberries and dark-room-at-night approach to give your body maximum chemical defence. Every little helps. Talk to Onc about low dose aspirin too. Don't go mad with blueberries or raspberries if on Warfarin for any reason (can't think you would be, but there 'y go).

PS especially the aspirin, re TNBC. They seem to think it stops metastasis in a good number of otherwise-very-rude TNBC cases. But it carries its own risk of stomach ulcers etc which is why you need to check with Onc and read labels carefully etc.