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Tamoxigang thread 49 when Sumer is y cumen in and we get out the Pimms

988 replies

Lilymaid · 16/05/2014 18:44

New thread!

OP posts:
yotty · 22/05/2014 10:28

Don't disappear Really, you need our support just like we need yours.

mrsrhodgilbert · 22/05/2014 10:42

Really, I've obviously missed a few things whilst in hospital. I'm very new here but your posts have always caught my attention. I haven't looked back to see your whole history but it does seem you've had a particularly crappy time. Am I right in thinking you've recently finished treatment? I can understand you might want to have a break from all this cancer talk and why not? But I hope you'll keep us updated, take care.

Speedypenguin · 22/05/2014 12:08

Foo what rubbish news and sending a big hug.

Really don't disappear. Sending you a big hug too.

All those who have had ops hope recovery is quick.

malt am guessing it is nearly half term. Hope you have a good one.

Getting ready for number three. Hopefully PICC line will work as it is supposed to.

ConsiderablyBiggerBuns · 22/05/2014 12:15

Oh FooFoo, how crap for you, just wanted to let you know I am adding my thoughts to everyone else's on this forum. I have been waiting for a CT scan for 2 months now, I get my bone scan results this afternoon, (5 lymph nodes affected) and getting unwelcome results from those is what we all fear the most, having come to terms with the basics. There are lots of positive stories on those, hope they give you some comfort, though you quite rightly are probably a bit devastated today.
really, if you are still reading - When I had cancer (hodgkins) many years ago, I was at my most vulnerable and sensitive immediately after finishing treatment when my metaphorical comfort blankets had been taken away. Absolutely no-one wants you to leave this forum, the one positive from your wearisome journey is the wealth of experience you will have to offer anyone else going through the same.
mrs hope you are still feeling chipper. General anaethestics are a funny thing, my side effects were debilitating indigestion and flatulence (the latter being most debilitating for the people sharing a ward with me)!

Lilymaid · 22/05/2014 12:30

Foofoo - yes what rotten news. I went from just breast cancer, to bone cancer to possible liver mets so know how it feels. Somehow we all manage to pick ourselves up and go on and try to banish those dark thoughts as much as possible. Hopefully your new consultant will cover all ground and sort you out with a new treatment plan that isn't too gruelling.
Meanwhile, have some Cake- any variety you prefer!

OP posts:
Shootingatpigeons · 22/05/2014 13:23

really This is a supportive thread where people can come to share experiences and information, vent their feelings and know they will find empathy and understanding, above all support. It is a great resource for women (and occasionally men) going through this horrible experience to come here and discover they are not alone, there is a land of the new normal, and a virtual tea trolley, where they can find reassurance.

I am sorry if you feel you are being doubted, this is a place for trust not doubt, but if you have a problem with anyone highlighting that your experience has been exceptional and really unacceptable then you are being oversensitive. I am not surprised, to have gone through what you have gone through would take someone with a will of iron not to be traumatised and to be struggling to cope. I remember after my infection on my second cycle my usual onc was away and I got the grumpy wonky onc who made me feel as if my wbc being so low again was a major problem with treatment and I was responsible for it. I went away feeling that I should organise my funeral then and there and I wept buckets. That was just one slight and isolated failure to provide support, but you are very vulnerable. I can't imagine what state I would be in if I had had my confidence and trust undermined again and again. However I am sure you will agree that it is important that the new people coming on here know that the sum of all your awful experiences is very very unusual, contemplating having to face even a fraction of it on top of Cancer will be distressing.

I would also say that if you are feeling very sensitive and struggling with mood and other issues, and can't find a way through with other coping strategies, there are plenty on here who can vouch for how important it is to get help from the doctor. A lot of us have had Counselling or temporary help with medication to help us get through those low points.

MomOfTwoGirls2 · 22/05/2014 14:11

Ah really don't go.

You and I started this rotten journey around the same time and had our major milestones at similar times. Though my experience was as plain sailing as your was troublesome (bar my week in hospital with nuetrophenia).

foo that is rotten news, very sorry to read it. But I guess at least now appropriate action can be taken. Have an extra large Wine.

wineoclocktimeye · 22/05/2014 15:29

foo what rotten news, but hopefully they are on top of it now. Huge hugs.
Fingers crossed for your results today bigger.
I hope you feel you can stay really, we are all here for each other, strength in numbers.

MyNewNormal · 22/05/2014 16:13

Please stay really. Though many cancer patients experience fantastic support and treatment from their docs and nurses, it's important to know that not all care is good. Your negative experiences with care/treatment is as important to share as the positive experiences.

weebarra · 22/05/2014 16:19

Off to see surgeon tonight - will get dressings off!
Still massively sore, not so much my chest but my armpits and arms - had complete node clearance on both sides. Definitely taking more than just paracetamol - normal?

weebarra · 22/05/2014 16:20

Off to see surgeon tonight - will get dressings off!
Still massively sore, not so much my chest but my armpits and arms - had complete node clearance on both sides. Definitely taking more than just paracetamol - normal?

malteserzz · 22/05/2014 17:57

Really I don't go, like someone else said you have a lot of knowledge and experience to share and you will probably need support yourself. I found finishing treatment really hard, you go from all of these appointments to nothing, which is lovely in one way but you do feel a bit vulnerable. Hope you can reconsider X

Speedy yes half term for me as I don't work on Fridays :)

Wee good luck with getting the dressings off, ask about pain but it's still early days for you I would think its normal.

Hope everyone has a good evening

Mummywheel · 22/05/2014 19:16

Will be very sad if you go Really you have been through so much and don't like to see anyone leave this thread. We need to support each other and your experiences will always been invaluable.

Sorry to hear about a possible delay with your last Tax Wren I'm 2 weeks behind you with my last FEC. I am hoping my cold doesn't delay mine.

Hope you manage to get some pain relief wee but as malt said it's still early days.

Wishing all you courageous ladies a comfortable evening Smile

mrsrhodgilbert · 22/05/2014 19:57

I'm also feeling really sore this evening, much more than last night. I haven't needed painkillers until now but feel like my breast could explode. I assume this is normal?

trice · 22/05/2014 22:25

Wee, I think the node clearance is more painful than the me and both sides! Take all painkillers offered.

Foo, sorry to hear your news. It's not easy to deal with I know.

Really, please don't leave, no one means to be mean to you.

MrsR, you should speak to your bcn if you are in a lot of discomfort. They may be able to give you something.

ConsiderablyBiggerBuns · 22/05/2014 23:16

Good evening.
wee I hadn't realised you were having node clearance on both sides - that is tough. I felt like I was carrying a really sharp brick under my armpit, it began to really improve after about 3 weeks, and then just felt like it had been super glued for another little bit. It's been 6 weeks for me now and no discomfort at all although I still don't have full upwards movement. Doesn't really impact me much apart from not being able to put my hair up. I really feel for you in having that issue in both sides - and if I remember correctly you have little ones, as well.
So, had first onc appt today. All good. Bone scan result clear. Really like my oncologist - A bit disorganised but really personable, very different to my surgeon. I have a few complications caused by having had radiotherapy in the past but hopefully nothing insurmountable. Apparently I will be having (as long as heart has not been damaged by previous treatment) TAC. Now, having been on this thread for a couple of months I was expecting a combination of FEC and FECT like most of you are having. Anybody else on TAC? Anybody know why this drug combination in particular would be prescribed or if it is just about preference for the doctor. I was also pleased that he took completely on board the dates I wanted to start the treatment, in order to fit in some extra curricular activities. All seems a bit more real now so will have lots of questions, I expect, over the next couple of weeks - due to start first cycle on 29th June.

MomOfTwoGirls2 · 23/05/2014 00:02

Wee, wishing you a speedy recovery, hope the soreness passes soon.

Mrs, are you still in hospital? That wasn't my experience with lumpectomy. Maybe you have infection? Talk to nurse.

BiggerBuns I have a lovely Onc too. She is so practical and supportive. My medical team (surgeon & onc) also worked around dates for me. Makes such a difference not to miss out on everything!
I had something similar to TAC (after checking it in MacMillian website). I had 4 AC, followed by 4 Taxol. My sister, treated in same hospital by different Onc had 4 AC followed by 4 Taxetere (That is AC-T, same combination as you are having, but with AC separate from T). I'm based in Ireland, and my Onc trained in US. No idea why Oncs pick FEC-T, AC-T, or TAC...

Meanwhile, keep in mind, chemo is not very pleasant, but quite manageable. And we'll hold your hand whole way through.

UKsounding · 23/05/2014 05:28

I might be completely off-base here, but I think that TAC versus FEC is related to the receptor types of your tumour. I think(!) that TAC is used for ER-/PR- tumours, while FEC is used for tumours which have hormonal receptors... I am ER+/PR- and had FEC-T because of the estrogen receptor. Are you ER-/PR-?

MyNewNormal · 23/05/2014 06:32

Considerably great news about clear bone scan & having a chemo start date. We'll be with you on 29th.

foofoo how are you bearing up?

mrsrhodgilbert · 23/05/2014 08:49

Thanks. There's been a bit of confusion, the nurse in the day surgery unit told me to remove my dressings after two days,ie today, and gave me new ones to replace them with. DH is very nervous to touch it and has just phoned the hospital who said dont remove the dressings. As we are only 10 minutes away they have said to go in and they'll check it so will do that in a little while. I'm going to shower first, carefully. It looks quite bloody underneath and there are two scars of course. I'll be pleased to get it checked, it does seem odd that nobody does that as standard.

ConsiderablyBiggerBuns · 23/05/2014 09:59

Hi, thanks for the responses. UK I am Oestragon+/HER- , got a bit confused with my ER's so not sure if that is the same as you or not. My date is actually 19th, not 29th. Chemo brain already just from getting the appointment through!
Mrs, I'm not surprised your DH is a bit nervous about touching your dressing so soon after the op, good job you are near the hospital. I am sure this comes from concern over getting it wrong and hurting you, not sure what my DH's excuse is for not wanting to look, touch or be within several foot of my chest even 6 weeks after my BMX, but hey-ho!

wineoclocktimeye · 23/05/2014 10:24

Great news re results bigger today
Hope to have the drains out later today and go home. Have had a reaction to one of the pain killers and been throwing up all morning (fun) but hopefully they'll still let me go.
Hope you got some pain relief wee
Hope everyone else having a good day.

Slightly lighthearted, but just realised how big my stomach is!, my boobs were big so overshadowed it if you see what I mean, so without them, there's no hiding it!

ConsiderablyBiggerBuns · 23/05/2014 11:49

Hello wine, I refer to the point that I realised that my stomach now stuck out further than anything else on my frontage as my 'buddah moment' - happy times!

weebarra · 23/05/2014 11:55

Yes to the enormo-tummy. Need to do something about that. Went to see surgeon last night and got dressings off. Huge scar from under armpit to where my cleavage was. Ouch.
Also I did wonder, as I'm not flat, but he said that I've got a lot of fluid in both breasts so will have to go and get that drained next week, which will be fine.
In better news, I got the provisional pathology (remember I had chemo before my mx) - right breast: no cancer in breast tissue, 2/23 nodes affected, left breast: 3 microscopic areas, 0/23 nodes.
So I suppose that makes me cancer free doesn't it?!

mrsrhodgilbert · 23/05/2014 11:59

Been to the hospital and we are not supposed to touch the dressings. I was given the wrong instructions by the nurse who discharged me on Wednesday afternoon. So pleased DH got nervous and called them, it could have been a blood bath. I am not at all squeamish but even I was alarmed. Anyway, nurse will be given correct advice to pass on and I'm still in one piece.

Bigger, it must be difficult if you DH is still not wanting to look at your chest. Absolutely none of my business but I can't imagine that helps the situation. I'm sorry about that.

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