Tamoxifen bus shelter -42

[Gigondas]

Dragging trolley onto new thread.

Mom of 2 I was terrified of chemo, thought I would have all the side effects and that I would be unable to do anything during it. The trouble is everyone reacts differently and you don't know how you will be till you start it but dont be like me and spend the whole of your first cycle waiting for side effects which didn't come !
Stock up on ginger biscuits, crackers etc and things you might feel like if you do feel nauseous. I've never felt like I would actually be sick but do just sometimes feel a bit off, like you do in early pregnancy
I have my chemo on a Thursday and am ok till Monday then for about 4 days I feel tired, spend a lot of time watching tv and reading, I have a funny taste in my mouth and have to eat what I fancy. Then after that I have 2 weeks when I'm fine, go shopping, lunches and dinners out etc drink wine and try and enjoy myself ! So it's really not as bad as I feared at all
The worst thing for me has been the hair loss, I think that's a really cruel side effect. However I use the cold cap and still have some it's just very thin, and I'm getting used to wearing my wig and have had lots of compliments about it especially from people who don't know and think ive just had my hair cut
Hope my ramblings have helped a little

Been out for a nice lunch and gossip with friends, chilling now it's cold and rainy here I've put the heat on

Afternoon all - so here goes - the low down following onc appt (may be long so feel free to skip).
Onc thought I would ask not to have any more chemo (as my FEC experience was not great) and said he was prepared to support me on that and not to try to twist my arm.

However, as I said I wanted to do everything that would be beneficial we spent a long time discussing possible benefits and chemo options. There have been no studies on the effectiveness of 3 cycles of chemo so he had nothing he could use but when pinned down (not literally though!) he said the chance of re-occurance would be reduced by 5% (it's already very low he said) by having a full course of chemo vs no chemo. What he couldn't say was how much my 3 cycles would have affected that - ie. have I already had 2.5% protection or nearly 5% or nothing.
Anyway I reckon that a potential 5% improvement is worth going for.
We then discussed having 3 x doxetaxal given 3 weekly (that's T I think?) but he thought a low dose of Paclitaxel given weekly might suit me better, but that is usually given over 12 weeks which he thinks is too long so he is going away to research whether a shorter course (8 weeks) can be given as he thinks that would be enough for me.

So tentative decision is yes to chemo as I think 5% extra protection is worth it for me but I am going back next Tuesday to discuss again after his research. He wants to check some of the pathology details as he knows that the largest cancer spot was 1.3mm but was interested to know if the others were a similar size or much smaller).
We both agreed that if I tried more chemo and didn't get on with it then it would be sensible to stop and not to worry about continuing.

Interstingly he also said I may not need any Rads (was expecting daily for a month once chemo was done) but he would discuss with his radiotherapist.

Hopefully that's not too boring (I'm sure Amber will be interested in the stats side). Just GP then surgeon appts to go today.........

Mum - my DCs are 9 and 13 (12 when I was diagnosed) and it is great that they are independant enough for me to rest as much as I need to. Hopefully you've got your head round the treatment plan now and it sounds like chemo is a wise option in your circumstances.
I am sure I have eaten out more since treatment started then at any other time - lots of lunchs and coffees .

The only organising I did was to get a wig (worn only once) and a silk pillowcase as I did the cold cap to try to keep my hair (sort of worked but am not going to continue with it). I've watched lots of boxsets as I often can't sleep at night (due to steroids) so you might want to think about that but I've not read a lot as I have found it hard to concentrate.

Kitkat you're getting closer to a plan at least. Can't believe he's going off to do more research and look at your results, you'd have thought he'd have thought about it all before your meeting today ! Don't think they realise how all of this waiting around affects us
More chemo for 5% definitely sounds worth it to me though

Malt - i wouldn't start chemo for 4 weeks after surgery so no actual delay I suppose - think he fully expected me to choose not to have anymore.

Glad you think a possible 5% is worth it - my mum and sister don't think I should have it - I'm not sure how easy it is for others to understand.

Ah that's ok then I'll let him off
It has to be your decision obviously, but I would want to do everything possible to stop it coming back and you've done half already

Had a text to arrange a night out with a group of friends today and some of the dates suggested were after I will have hopefully finished chemo which made it seem not so far away

of course the other thing is if I have no chemo and no Rads i'll have to go back to work full time and psychologically I'm not geared up - not expecting to back until after Xmas

Afternoon all...

Sounds like you've all had busy and productive days.

I met a friend for coffee and some Millies cookies, yummy! Then had a call from hospital to say I am booked in for a CT scan on Monday cue tears! Not because I am worried about it, (although not looking forward to the results) but because I thought I was going to have a couple weeks free of hospital appointments I suppose the reality is, while we are on this journey hospital appointments are never far away!

On a plus, I needed another Millies cookie to cheer myself up!

Then I had a text from one of my old bosses with a picture of my old charges, who I haven't seen for a while. My goodness they are so grown up, and I feel so old. They are 10 and 7. I looked after the youngest from 8wks old I love the fact that however crap and upset I feel, the smallest things can lift my mood.

One more day and I'm back at work

HAPPY BIRTHDAY MAS! Hope you have had a great day xx

Kitkat - I'd definitely go for 5% - when you add that to the percentages that the other treatments give (like surgery, any drugs afterwards, rads etc) it all adds up. I'm all for throwing everything you can at it!

really - its a bit of a pain to have the scans so soon, - but then again good to get them out of the way. I know it is policy in my hospital to get scans done before the node surgery - so may well be the same for you

Another vote for the 5% here.

thanks Ladies. Been to GP and officially signed off BP meds and she also said go for it for 5% - also along the lines of giving it your best shot.
Off to be pumped up now.

really - yes you'll soon find that appts are a very regular feature now

5% sounds worth it to me too, kitkat. Chuck everything at it makes sense.

Am on a train on way back from v long work day. Left the house at 6. just wanted to wish MAS huge birthday wishes. Did I miss the cake?? xx

Sorry not to post more. Will catch up soon but waving to all. x

I'd def go for the chemo too KitKat, as Kurri says, chuck everything at it. Really have a big hug from me, you sound like you need one.

Well today was interesting. The herceptin went in ok but we sprung a leak somewhere almost toward the end of the chemo infusing and some extravasation occured around the port site. My chest swelled and I had visions of this bloody toxic drug turning my skin black and making it fall off!! The chemo nurse spoke to the specialist nurse in Clatterbridge who advised topical steroid cream and I was reassured there would be no skin dying and falling off as this drug causes more of an irritant effect...phew. I'd had about 70% of the chemo before this happened and my onc was happy for the rest not to be given peripherally. So I'm now sat here with a pink warm chest and swelling that is gradually going down. Not the best start to second phase of chemo. I have to go back next wednesday and get the port checked and we'll go from there.

MAS hope you are enjoying your birthday :)

kitkat another vote for the 5% here, if it were me I'd need to know I'd done everything possible, belt and braces and all that

wow picture that doesn't sound good, hope your swelling goes down soon

really yes sometimes it does feel like you are never away from the damn hospital [hugs]

mom - good advice re chemo already, so I won't repeat. I've had a roughish ride re side effects, but even so I've had one crap week and two okay or better weeks each cycle. Everyone is different, so hopefully you won't get too many SEs. The anticipation of chemo is honestly worse than the reality.

gigs hope today's woo has eased the pain in your arm?

to everyone else

Quiet day here, just about finished sorting my craft room out, so can hopefully "play" tomorrow :) I really need to start on my Christmas cards...! Then met up with a couple of friends for a brew, nice to have a natter. I'm definitely a lot more tired this cycle than I have been before.

Picture gosh that does sound scary ! Glad you're ok

Betsy you said the c word ! Wash your mouth out with soap it's September !

Picture - that's really scary - you sound quite calm about it all though. Hopefully the swelling will go down soon.

And Happy Birthday to MAS (sorry I'm rather late in the day with this) .

Happy birthday Mas.

Crikey Picture, what a drama! I'm glad you are ok. I would have panicked.

I have been booked in to have my lung fused. Apparently the waiting list is huge. I am in two minds about the wait, it is supposed to be a painful recuperation and I actually have no symptoms at the moment. But the onc said it is damaging my lung and has to be done. Bum.

I am a chicken about operations.

Don't worry too much about chemo Mumof, I got through it twice and I am a wuss. I would say if you haven't got an ipad or equivalent, get one. An audible subscription and Netflix would be nice presents. And if you don't already - it's a good time to learn to knit.

Ooo Picture, don't like the sound of that - I am normally very calm but think I would have been a bit panic'd.

kitkat - I will take any treatment that gets rid of this stinky disease

Mumof - I have only had one cycle of chemo but have been lucky and no real problems apart from constipation (sorry if TMI). It may change but just sharing as it isn't always awful. I even manage long walks each day and plenty of wine

trice - lung fusion ?? that doesn't sound very nice at all

Woke myself up laughing at my dream - it involved snow and sliding around - and couldn't get back to sleep so on the sofa now with the cat and Idris Elba - lush

Morning. I coped much better with yesterday's expansion and had a good nights sleep (courtesy of some codeine) - kids have left for school so just chilling in bed.
Got an electrician coming round today to put some lights up so will have to get up again in an hour

trice - what is a lung fusion and how long is the wait?

kitkat: how many sessions will it take with the expansion ? and if it isn't too personal a question - what size are you hoping to go to - ie: what sort of cup size.

Morning all....

Well done on a good nights sleep kitkat and glad the expansion went better this time.

I had a really odd night! I switched off tv and put my radio on, as usual. Got into bed, and burst into tears! I don't really know why, or what I was really upset about, but I couldn't hold it in

This morning I have lovely bloodshot, puffy, red eyes! So now I need to pull myself together, and try and have a better day. Last day off before I am back at work.

Thanks for all the hugs yesterday, i really needed them. I think reality has hit me and I can now see, that this is going to be a long tough fight. Especially without my family being right here! BUT I know I can do it, I just have to get used to being weirdly over emotional, and learn that that's okay! at least I think it is

Sorry to start the day on such a downer, I promise to come on later and share something nice I hope!!

Have a good day all xxxx

Morning All

FooFoo step away from Idris , he is mine !!!

Trice what and why is lung fusion about ?

Really the sudden onset weeping is perfectly normal . Esp at night , for some reason it all seems worse at night !

Picture hope you're ok this morning , yesterday's shenanigans sounded really scarey !

Right , gotta go put DDs hair up for school .
Hugs to everyone else , and a liberal scattering of GBBO goodies on the trolley
Later Ladies ...

Morning all
Really it's all normal I think bedtime is hard as that's when you have no distractions, I was on sleeping tablets for a long time. I often have moments when I'm doing something and I suddenly think oh #### I've got cancer it's a lot to get your head around

Kitkat glad the pumping went well

Trice that is a pain you have to have another op

I had friends coming for coffee but they've cancelled as one is poorly and doesn't want to pass it on to me. So think I'll go shopping instead ! Need some winter clothes now it's so cold
Hope everyone has a good day