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Tamoxigang thread 50 with summer sun, sangria and maybe even some sand

992 replies

foofooyeah · 17/07/2014 18:38

Grin

Welcome to thread 50 .... Yes FIFTY.
Lots of us are rising 50 so rather apt!

OP posts:
MyAngels · 09/09/2014 12:21

Just popping in to say hello before I head to the hospital for the mastectomy..again! I won't believe its really happening until the I'm being wheeled into theatre. The nurse at the private hospital told me "we don't cancel operations here..." so fingers crossed.

Elporto - I hope your results appointment goes as well as it can. I think you read my mind with those words about your DH wanting to know about prognosis but you just needing to know what is wrong and what they are going to do about it. I feel exactly the same way, as my DH seems so desperate to know my prognosis and I do not, I just want to get on with treatment...

Best wishes to all and I'll see you on the other side of the mastectomy..hopefully.

xx

beccajoh · 09/09/2014 13:26

Elporto I can relate to the business about prognosis. I've never been desperate to know and really have only found out by accident, or because the situation has changed suddenly.

Re. hospices, DH said to me last night that most people don't go to hospices to die, which I know, but no one comes out of there having been magically cured of their condition do they Sad

beccajoh · 09/09/2014 13:37

It's wanting focus on what's happening NOW rather than in six months time. What happens then is dependent on what happens now, surely?!

Angels, good luck (again) for your surgery. I had mine done in a private hospital and it was pretty good. My own room, nicer food, quick responses from the nurses when you pressed the buzzer. I even had a view lol!

elportodelgato · 09/09/2014 14:51

Hello again, MyAngels my thoughts have been with you going in for your mx (again!) I do hope it goes very smoothly and w'll be seeing you back here recovering well. Have some Thanks and Brew for when you come round Smile

I am just back from yet another 4 hour stint crying on my BCN, poor woman. Got my surgery results, it's not great news which I kind of knew - 13 nodes removed of which 12 had cancer cells, also some vascular invasion and very small margins indeed. In some ways I feel right back to the beginning tbh. The good news: it hasn't spread to any other organs, they have gone over me very thoroughly and are sure of this. Also, the tumour is gone, I have to remind myself of that - the surgery has happened, it's gone. I always knew I would be having chemo so really nothing has materially changed, but I do feel knocked down again. I should have known there would be a fierce comedown after having such an awesome holiday. Oh bloody hell Angry Sad

Thanks everyone for the insights into 'prognosis' - I was starting to feel like I was a freak for not wanting to know but I REALLY DON'T and I really don't want anyone else to know either. I see the oncologist on Thurs next week, apparently she is great and very down to earth and clear about everything which I hope will be comforting for me while also satisfying DH's more scientific brain.

Off to have a quick cuppa before the school run, I am meant to be going to my book group tonight and am in 2 minds, perhaps if I put on some make up and heels I'll feel like going out...?

elportodelgato · 09/09/2014 14:56

Beccajoh, exactly, I want to know what they are going to NOW to make it better, I really can't think any further ahead. DH actually asked me last night what I wanted to do for Xmas, and I just cannot imagine 4 months away - ideally I would just lie on the sofa being fed bonbons by Jake Gyllenhaal! And everyone tells me: 'the future is unknown' so I can live in hope! Grin

malteserzz · 09/09/2014 15:05

Elporto I'm sorry your nodes weren't clear but hold on to the face that your other organs are, that's fantastic ! It's all gone and chemo will just double check that. Chemo isn't nice but it is doable and we will help you through. Honestly I'm a huge wimp and if I can get through it you can too

Only you can say if you feel like going to the book group, depends how close they are I suppose, do whatever feels right

My angels good luck and see you on the other side :)

malteserzz · 09/09/2014 15:06

Off to google Jake thingy !

RahRahRasputin · 09/09/2014 15:36

elporto I'm sorry it wasn't brilliant news, but I think others on the thread have had similar and are still here so do not panic yet :) as you say the cancer is gone! They will blast you with chemo (and possibly radiotherapy too?), which is no fun but manageable, and you'd already prepared for that so at least it isn't another horrid surprise. Do you know when that will start? I was half looking forward to starting chemo as the sooner I started the sooner it would be over and I would get my life back. Also once you know you can start preparing and planning. If you know what type of chemo then others will be able to tell you about what symptoms to expect, also the Macmillan website has information sheets for each chemo drug/regime. You won't get every side effect (some people don't get any!) but it can be useful to know what to expect.

Some people plan treats for in between cycles. I ordered the West Wing boxset, got my dad to convert a whole box of learning French cassettes to MP3 (and had him start on the Spanish set too) and bought a book on painting flowers, as well as buying some bloody expensive paintbrushes and other supplies. This was all rather optimistic as I was too ill to do any of it, but I'm not a good example as had a totally different chemo regime to what you will be having. There will be lots who have had the same one.

I think with the standard breast cancer chemos that others have had you should be able to expect at least one good week per three week cycle, so you might be able to plan some treats for then.

The thing about all the stats is that no one can tell you your own personal prognosis. They can draw conclusions based on reams of evidence, but they still can't tell you which category you will be in. Some people get a terrible prognosis and go on to be just fine and others get a really great prognosis and then things still go wrong. So it can be useful for the medical teams to know these things but it won't give you an answer either way.

I enjoyed Hmm finding out about my cancer, from a scientific point of view. I managed quite successfully to separate the interesting condition and cancer from me and my life, but I didn't want to know my prognosis, I suspected it wasn't good from the way my team were talking but I wanted to be able to look people in the eye and tell them I was going to be fine. I have a terrible poker face! Blush

But I found out my accident and it wasn't as bad as I thought. My oncologist is just a pessimist. One of the nurses suggested it is because he feels that no 21 year old should have anything other than 100% chance of survival (although no one in the world has that!) but I think he was just cross that I might die and ruin his statistics Grin he looks cheerier at every all clear scan so hopefully that's a good sign.

I've rambled on loads and I'm not sure it's been all that helpful but hopefully others will be along shortly with better advice!

Did you enjoy your coffee and cake? BrewCake I hope a walk in the sunshine helped. I always find that uplifting.

If you think you can face book group then I'd give it a go, you can always come home if you aren't enjoying it, I'm sure everyone will understand. I would say make the most of going out while you can as you won't always feel like it during chemo, and it can really help to just go out and have fun and feel like yourself rather than a collection of organs and cells and lab results :)

Take care of yourself Flowers

Mummywheel · 09/09/2014 17:14

Buns I do hope you get some support. I think if you are seen to be coping some people just let you get on with it when in reality things can be difficult.

Good luck Myangels we will all be waiting for you on the other side to help you recover.

Elporto Best to concentrate on the positives and prepare for the next step. You will get through it x

Marshy · 09/09/2014 19:11

Hi all
Well it turns out I have DCIS in my remaining breast. Nothing invasive detected as yet but won't know for sure until post op histology is available. I'm booked in for a mx and reconstruction on 30th Sept and she'll do sentinel lymph nodes at the same time.

Surgeon asked where I was at with the gynae stuff and I told her I have an appt for ct results on Thursday. She said that she would probably have heard if anything seriously untoward was going on and anyway she's got me first! I'm hoping that Thurs won't bring anything too horrible but we'll see.

Has a bit of a cry when I got home but not as devastated as I was this time last year.

Hugs for elporto and for us all xx

elportodelgato · 09/09/2014 19:51

Oh Marshy, that is crappy news, though you sound very sanguine. Great that it's 'just' DCIS I suppose and that you have a date for surgery quite soon too. I will have all sorts of things crossed for the gynae on Thursday, what a bloody week for you! Cancer really is the gift that keeps on giving...

weebarra · 09/09/2014 20:03

Marshy, that is pants. Am I right in thinking you already had a mx, so you know what to expect. I had a bmx and I'm happy that at least I'm symmetrical!
Bone scan today, went fine, should get results in a couple of days.

malteserzz · 09/09/2014 21:30

Sorry to hear that Marshy :( though you will get through this x

ConsiderablyBiggerBuns · 09/09/2014 21:35

Hello everyone and thanks for all your kind words. Won't bore you with the latest on my mum which seems to change daily. Am posting to commiserate with marshy, I had an elective BMX in April with DCIS found in the supposedly clear breast. At least they have got it nice and early with no need for node clearance or follow on treatment and you can have a matching reconstructive pair, but really appreciate that you must be feeling very low not to be past the whole cancer shenanigans. The more people I speak to the more I think they should whip both off as a default, but maybe that is just me!
elporto sorry your results were not the best, however, you have been reassured about secondaries which is the main thing. Chemo isn't fun but they really do take any SEs seriously to try and make the experience as bearable as possible. We will be here to hold your hand - so says the seasoned old timer who had chemo no.5 today. One more to go - yippee.
myangels just in case you are still logged on, wishing you well for tomorrow. Let us know how you get on.
I will shortly be entering post chemo maggot in a duvet territory, so sending all of you who need them, healing vibes, luck or a good old fashioned hug in lieu of anything more intimate in the bedroom department.

foofooyeah · 09/09/2014 22:14

Oh marshy,n that is crappy crap crap. To go through it all again, but to remain positive it been caught early.

Buns: no I didn't swim during Rads (actually nearly did one day as forgot)

Elporto: sorry news was upsetting but the treatment will sort it out.

My angels: hope all has gone well

I has my final Rads today, so apart from Tamoxifen that is all my cancer treatment done. I was diagnosed 1.8.13 so its been a long old haul.
Back to work tomorrow.

OP posts:
Marshy · 09/09/2014 22:42

Not long back from dinner at the pub as really could not be doing with cooking tonight.

Thanks all for kind thoughts and encouraging words.

Wee I was pretty much on this exact same square last year and ended up with a mx and reconstruction for DCIS. I'm hoping this follows the same course but keep wondering if my luck is going to run out - never really thought of myself as superstitious but maybe I am. Don't mind the mx too much and it will be good to be symmetrical. It's just waiting for all the results that is so draining. Fingers crossed for your scan.

Buns interesting what you said about dcis in your unaffected breast. I was asking about having a bmx last year but that didn't go anywhere as no problem apparent then but I do wonder if it was lurking anyway. Wish i had been more assertive but was just feeling bowled over at the time. Did you have to have lymph nodes sampled on your clear side? It's that I'm dreading most as found it quite painful and I got a lot of cording for a while though that's ok now.

Foofoo good luck for work tomorrow and I hope you can ease yourself back in gradually.

Goodnight all.....

Janbk · 10/09/2014 07:44

Hi, a good friend suggested I post on this link. I am trying to help my sister who has bowel cancer. The primary tumour has been removed and rolled up with a course of chemo (5 of the 6 infusions). Initial scan was clear (June) but tumours have now appeared - 3 in the liver and also in peritoneum. She also suffers from lupus, Sjögren's syndrome and systemic sclerosis which are obviously complicating the issue. She has now been passed to palliative care. We are looking for advice from anyone who has any experience of similar issues. Looking at any and all options which will let her have as much time as possible. Has anyone used or got any experience of DCA or "Cesium Chloride protocol"? We feel that she has been out in the "too difficult" pile now and need to do our own research. Thanks in advance!

Wren48 · 10/09/2014 08:59

Elporto, I'm very similar to you in terms of diagnosis. Just finished treatment in July and enjoying getting stronger (but bloody fingernails are still falling off, dammit). My book group has been my most supportive group of friends. I've cried all over them and found it very helpful.

Marshy, sorry you have to go through this whole thing. Fingers crossed that there's nothing more to find.

mrsrhodgilbert · 10/09/2014 09:03

elporto I'm sorry the news was not better, but excellent that it isn't anywhere else. You sound like a real fighter, I'm sure you will get through your treatment kicking and screaming all the way.

marshy how awful to have to be going through this all over again. How frustrating and maybe there's something in what buns says about doing both together. Does DCIS mean an automatic mx? I can't quite get my head around that.

wee more scans for you too, good luck with those results.

foofoo it sounds like you've had a long year. You have my admiration for going back to work the day after rads, I was in a lot of pain and rather knackered. Look after yourself.

myangels I hope your operation went smoothly yesterday and you were well looked after, let us know how you're dong.

janbk hello, whilst were mostly breast cancer patients at the moment we do have a bowel cancer patient in our midst and I'm sure she will pop up later. I'm sorry about your sister, that sounds like a very difficult set of circumstances and it must be very upsetting to feel she has proved too difficult and theyve given up. I think the most useful of us will be amber who keeps up to date with the latest research and may be able to offer some help or point you in the right direction.

Janbk · 10/09/2014 09:12

Thanks mrsrhodgilbret, it's very difficult to know what to do as I know the stats online can be way out of date, and hard to know where to go as she has such a difficult and quite unusual set of circumstances. She has two DC aged 15 and 19 who aren't coping well at all (not surprising), my sister thinks counselling will benefit them. Does anyone have experience of this, or advice on how to make its road any easier for them? Thanks again x

RahRahRasputin · 10/09/2014 09:51

Hi Janbk, I'm sorry to hear about your sister.

I've had bowel cancer but not secondaries. There is another poster on here with secondaries, but we haven't heard from her for a while - last time she posted she was having trouble with chemo. We also had another poster knittingnovice who is sadly no longer with us. I will see if I can find a link to her blog, which she shared on this thread and elsewhere on Mumsnet, as she may discuss her treatment in that.

Has your sister discussed her concerns with her team? My experience has been that they have always acted in my best interest, although at times I disagreed with their decisions. If she feels that she is not getting the best treatment possible then please encourage her to speak to the team and hopefully they will be able to explain why they are doing what they are doing (or not doing).

It may be that the team are not giving her the best treatment, in which case it is time to kick up a bit of a fuss and get better treatment or change consultant, but it may also be that the protocols you have researched are actually unsuitable, especially with her additional conditions.

So if she hasn't already done so, the first step would be for your sister (and you) to meet with her consultant and discuss her treatment options and ask all her questions. If the consultant does not give satisfactory answers then she can ask to see someone else.

I hope your sister is coping OK with the chemo. What regime is she having?

All the best to you both, sorry not to be of more help Flowers

RahRahRasputin · 10/09/2014 09:52

Sorry no advice on helping children cope as I don't have any, but counselling may be helpful. I think at that age they should be allowed to decide themselves whether they think it would help, rather than being forced into it. I think there are some charities that advise on helping children with a parent's cancer diagnosis but I don't know of any off the top of my head.

RahRahRasputin · 10/09/2014 09:54

marshy sorry to hear your news and that you'll have to go through the surgery again Flowers

mrsrhodgilbert · 10/09/2014 10:09

Thanks rah rah, I knew you'd be along shortly. Do you have a dedicated bowel cancer nurse, as we have breast cancer ones? I assume that if I wanted counselling she would be my starting point and I'm sure there will be services for families too. I can understand the worry of her children, mine are only a little older and it's awful to see them upset. With one of them I have to tell her everything that's going on, I have learnt the hard way not to hide things from her. The younger one is a little easier to protect and seems happy that way at the moment.

malteserzz · 10/09/2014 10:20

Janbk sorry about your sister, sounds really difficult.

Hope you're working hard foo foo :)

Mrs we don't all get breast cancer nurses, I don't have one am quite envious of those of you who do as they sound fab !

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