38th tamoxifen - waiting for summer in the bus shelter

[Gigondas]

New thread.

Hi all- busy weekend and have tried to keep up.

Feeling very tired, sick (dunno why but started before rads so can't be that) and still achy but not as painful as it was. It is very limiting as can barely make myself a drink .

Big gig party was a success tho which is good.

Much love ESP to those feeling sick, sore, tired or anxious. Will try and post when feel more human. At moment I just feel like giving up as so done in and limited.

Hugs for Gigs x
Feeling crap here too, dh ringing my school to say I won't be back for ages if ever

Gigs, wonder why you're sick. Could it be one of the drugs you're on? I felt sick all last week with the antibiotics I had for post op. Bet you're knackered just by the party and the emotion that goes alongside. Pics on fbook were lovely.

Malt, the moon was rather wonderful last night. Lucky here as the clouds parted. I sat on our front step and watched it for a while. Hearing you talk's making me remember how overwhelming it all is at the start. There's something big every day almost and no real respite. Can you and DH have a treat later? Even if it's just a wotsit-fest it might help.

Kurri, if you're out there won't hassle you, but am thinking of you xx

Got a big work pitch to prepare. Yikes.. on for any who want to distract me.

I'll distract you smee -am delaying doing anything at the mo..
good luck with pitch
Poor gig - maybe it's just a combination of everything ? So glad big gig had a fab party.
I think I've kind of got used to feeling a bit sick and am aware that my hands are just permanently tingly- almost no point in reporting these facts really. I can draw though and that's really the main thing

Smee Couldn't see the moon here last night but I'll look again tonight
I'm trying to take small steps so I've text my lovely hairdresser to see when she can fit me in, she's been cutting my hair for years so will be ok when I cry. Dh just rang and told me off for moping, he's right but hate being told what to do ! Both kids are out tonight so were going for a walk

Mas it's dds prom on Friday, she's Y9 but here they change school for gcses. She's very excited there's been lots of sharing which dresses, shoes etc they've all got. Your drawing must be a comfort

You must post pics of prom costume !
Working (ie drawing) gives me a sense of purpose and identity really - besides I get horribly restless and twitchy if I have no project - my dad is the same and at 80 is still working !

Ongoing nausea's horrid, MAS, as are permanently tingly hands. Anything chronic like that gets to you I think. I know drawing keeps you sane though. Thank goodness for that.

Malt, my lovely hairdresser and I totally bonded over the whole hair loss thing. She stopped charging me and I still don't pay v.much for haircuts, so I take her out for big breakfasts before she cuts my hair. Each step is so hard isn't it. Exciting about DD's prom.

Will put a photo up on Friday
Hairdresser sounds lovely smee

Going out for lunch later with my friend to do some shopping don't really feel like it but think I will feel better if I do go

bet you will if you go malt - have a jolly time.

Have a nice time malt, little steps are good, how you're feeling is perfectly normal and you will start to feel better soon I'm sure :) I was a bit weird as couldn't stop smiling after diagnosis, and again with chemo, I think my medical team think I'm delusional

I've emailed a lady about having a "colour analysis". They tell you which colours suit you and give you a little book so you can match them when you buy clothes. It sounds quite fun and I really need a complete wardrobe overhaul so I thought it'd be a good thing to do after treatment :)

MAS tingly hands must be annoying, is there not anything they can give you for that?

smee your hairdresser sounds lovely!

Ooh,new wardrobe ruby - exciting ! I just know I love blue, so wear that a lot...hope it's my colour
I have pyridoxine for hands, so it should help, but am thinking that capecitabine is strong stuff....I might take a bit more ( it's vit B6)

how exciting Ruby - that's a really nice treat to organise for yourself. I'd love to have that done at some point so do let us know how you get on.

Afternoon All

Ruby that colours thingy sounds like good fun . They are always going on about it over on the style and beauty board .
Once you've had yours done , you can do me !!!

Hope all the sicky ladies are feeling a bit better today .

Gigs get Dr Lovely to work on some more pain relief . You shouldn't be suffering this much

Malt I did my first round of chemo 2 years ago , so I sound mighty blasé about it all now .
But at the time , I nearly vomited walking onto the unit for the first dose !
So we definitely understand how you are feeling right now , and you are definitely completely normal !

Question for the ladies with mx scars who haven't had recon .
Mine is still pretty numb (from start of scar down past end of armpit scar , prob about half way down to my elbow)
But I'm getting pain from the scar , and a feeling that I can only describe as fullness from my arm pit .
How can I feel pain if its numb ?
Is this phantom pain ?
Anyone else had this ?

Smee your hairdresser sounds lovely !
I'm looking for a hairdresser I can build a relationship with sounds like an ad for a dating site
Haven't had my hair cut for over 2 years !
JUst never found a hairdresser that understands my wayward hair ...

gigs hugs, agree with Topsy. You have had a very full weekend though, glad big gigs party went well.

Topsy My numb area has now shrunk to just being at the back of my armpit and the back of my arm also down about half way to my armpit but I do get that full feeling there sometimes, and some strange sensations. Sometimes it feels swollen. Sometimes my inner arm brushing against my armpit is really tingly. When my whole MX scar was numb I got all sorts of weird messages from the nerves, sometimes not so much numb as hypersensitive, not actual pain but very uncomfortable, that set my teeth on edge IYSWIM. I still can't wear a wired bra.

ruby my cousin in law does colours! She always looks great and I know I should get her to do me but I worry she will ban me from navy blue which I am sure suits me greatly and wearing it all the time has nothing to do with it being the colour of my school uniform and therefore comfortable I think anything that is building you up is good when you are being knocked down by Dr W - I think we can make this personal as he doesn't seem to hesitate to make you personally responsible for the reaction to his drugs. He is Dr W the wanky poisoner

malt My big fear pre chemo, was chemo brain. It was more than a little part of the motivation to go back to uni a few years ago to do a Masters, and I did better than just pass, so that was a little triumph over the bugger and what it did to me. (The comment about Leeds was just me wanting to be an eternal student, I am actually still at uni or rather loosely attached as I am doing a PhD but it is a huge and lonely project and I would much rather be doing yet another course, but that would be costly and self indulgent and as my daughter's say, it is their turn)

Topsy, I know I'm different as have implants, but I get numb pain, tingly nerve pain like Copt describes and occasionally a swollen feeling too. I am reassured as the elective mastectomy gives me more hassle than the cancer one.

Colour chart sounds fun, Ruby. Even if you disagree with them it's a great distraction from chemo.

My hairdresser is fab. Topsy, I found her as no-one else could tame my hair. Pity you're so far away or would recommend.

Spent much of this morning at Breast Unit waiting room waiting for 1.5 hours for appointment with oncologist. He's outlined the treatment - T-FEC of 6 treatments at 3 weekly intervals. Off to hospital tomorrow to have port fitted, then some scans to be fitted in, then, hopefully the treatment will start at the end of the week. I can see I shall be searching every tamoxifen thread for the wisdom of those who have already gone through it all.
I think Ruby's idea of the wardrobe overhaul and colour analysis sounds great, so is something to plan for the end of my treatment too. DH has sanctioned a few luxuries (it is usually hard tack only chez Lil) for both of us to get through this time, so suggestions in writing will be much appreciated.
At least I haven't got young DCs to worry about as well - both mine are over 21 and not currently on the same continent as me.
Ah well, back to the work inbox ...

Lily, lots of us have had the FEC/ Tax combo, me included. Ask all and any questions you want. That's one of the reasons we're here after all, to help others.

Just thinking on treats, most hospitals seem to have a free pamper session - can't remember what it's called, but it's subsidised by all the major make-up companies and they give you a huge bag of goodies/ show you how to look good even on treatment. Can anyone remember what it's called??

Just dashing on before kids swimming lesson so will catch up properly later.

BCN phoned, she has nagged re chemo start date and they are supposed to be ringing me this afternoon... But the amazing news is my chest X-ray and bone scan were clear woohoo! (liver and heart scans tomorrow)

Lily I'm supposed to be starting FEC-T this week too, so we can hold hands

I think it's called look good feel better
Good that things are getting in place lily but bet the 1.5 hour wait was awful How are you feeling about it if that's not a daft question

Ruby the colour thing sounds great pass on any tips to us ! I tend to wear quite a lot of bright colours, not sure if they're what I'm meant to wear though !

Copt I thought you really were packing up and off to uni see I have the chemo brain already ! I actually hadn't worried about that as a side effect yet it's more the hair ( vain) and sickness for me. And that it doesn't work

Topsy I used to read the s and b board a lot before this I think I ought to again instead of the morbid sites I visit especially late at night !

I made myself go out this afternoon, sometimes I do just feel like lying on the sofa and being a recluse but I know it doesn't do me any good

Betsy that's great ! X

Lily I really took advantage of the complimentary stuff where I was treated, massage, yoga, anything that relaxed and indulged me really. I'm not a makeuppy person so I steered clear of those but I did have my first facial And you do get a lovely clear skin with chemo I had FAC but I think the A has been replaced by E as the preferred option. As smee says always glad to answer questions, at least it is something good that comes from this shitty experience, being able to help others

Lily - are you starting with FEC and then doing T next? And is it a portacath port under the skin rather than a PICC line? I had FEC x 4 and Docetaxel (T) x 4 with an under skin portacath thingy, so can give you a good bit of detail but wanted to check those bits first...

smee that's Look Good Feel Better, it looks like good fun! I'm waiting to find out if I'm eligible for one :)

lily good you've got a plan of action. Someone recommended to me to have a treat planned for the end of every cycle to help you get through. I haven't quite managed that but instead I'm having my wardrobe and colour thing as a sort of mega treat at the end I shall report back to you all how it goes. I wouldn't plan any foody treats until you know how you're doing with nausea and taste changes etc, otherwise you might be disappointed. The whole time I've been dreaming of a massage so I'm hopefully going to have an aromatherapy massage at some point too. Lots of people at my cancer support group recommended Indian head massages as it doesn't affect any surgery sites etc. and is quite relaxing and luxurious. A few weeks ago my sister did a little foot spa for me, gave me a heavenly foot rub and then we did a foot soak in some Sanctuary spa foot stuff and then put on loads of moisturiser and thick socks. That was a lovely treat too! After my surgery I felt like I didn't really know my own body, felt a bit angry at everything that had happened to it, so I found doing nice little things for my body kinda helped me feel better about it. Sorry I'm rambling on I shall stop!

copt wanky poisoner, I like it. I'm sure navy blue suits you, you look lovely in the photos I've seen on Facebook :) but you should get your colours done as it sounds quite fun! As long as they don't say no leopard print I should be fine

Betsy that is fabulous news! Yippee! sending positive wishes for tomorrow's tests

Managed to cross post lots with my snail pace typing, waving at you all :)