Mutual support thread for breast cancer patients. All welcome including non-cancer patients who want to chip in!

[anorak]

There seem to be quite a few of us now so I thought we might like a place where we can congregate to laugh, cry, share, compare notes and give each other a bit of support.

X-posts there Bla - mind-reading!

Sorry you've been ill again. Hope you feel better soon.

hi all - ears are ok now thanks!! At the moment i am actually infection free!! Had my blood transfusion yesterday but have yet to feel the benefits!

Only one more lot of chemo to go through - cannot wait to be done with the hell that is chemo. Roll on September 15th.........

Hope all you lovely ladies are well - cannot believe the children go back to school next week- where did those 6 weeks go?

XX

Huffpujff - yeah on being infection free, long may it last.

I have read Blood lines by Massa Gessen, about her struggle with the BRACA gene and it was an interesting read.

I am suffering side effects from the removal of my ovaries. I was very blaze about them before the surgery, but they can be anoying - night sweats and hot flushes (or meditarian moments as DH has been calling them). Mood swings seem to be under control with a small amout of HRT. I can not have any more until I have my breasts removed, as it obviosly has a link to BC.

My Aunt is doing well following her mastectomy and reconstruction, although her recovery has been harder than she anticipated. One of the long term effects of chemo.

MY cousin went in for her op on Friday, only for it to be cancelled at last minute due to lack of beds, so she is back in a couple of weeks.

At the moment I am think of not having mine done this year, as DS2 is really cling (he only turned 2 in June) and I think that it will upset him and me to be apart, not to mention that I will find it hard to do much with him after. I am seeing the surgeon in October so will discuss more then.

Anorack - What are your thoughts on the reconstruction at the moment?

Bla - good news on the drain.

the hot flushes are a PITA are they not TMH?

I only have one more chemo to go huffpuff, I really hope that I don't have to do this ever again.

I am really impressed with the way you are managing to look forward anorak, I hope you get a fantastic new boob.

I have my appointment for radiotherapy setup in a fortnight and am a bit freaked out that they want to tattoo spots on my mangled chest.

Hi pigleto, can't say for sure it would be the same for you as I don't know the details of your circumstances but when I had radiotherapy I only had 2 tiny tatoo dots, like the smallest of moles, and now 9 years later I can barely see them (and only cos I know they are there).

Just to let you know that I had breast cancer when I was 27, I am now 36 and there has been no reoccurence. Thought that might send a positive message that it's very possible to get through this and get on with the rest of your life! It's just something that happened in my past and has made me a stronger person. Of course I do sometimes wonder if it will come back, but because I get regular enough check ups then I'm confident that it would always be caught early enough.

Hello all. I am thinking I would like my reconstruction to be using my own tissue rather than an implant - perhaps from my back so that I can still exercise. But I am going to have a consultation 3 or 4 days before my op so I can make the final decision with the surgeon then. Saves flying back and forth from Bermuda to Boston more than once.

I am just waiting for Kimi to get her visa now because she is coming over from the UK to accompany me. Then dates can be fixed.

hi all

well, i spoke to soon.....

am now on anti b's for an infected canular site. Blardy infections!!!!!!

XX

You poor thing huffpuff. I'm just home from London and a quick trip to the hospital to have the port of my new boob taken out. It hurts a bit more than I thought it might - the surgeon took out about a foot (25cms'ish) of plastic tube for the saline to go up and down.

this time next week i will have almost finished my LAST CHEMO!!!!!!!! *

er...... not that i'm excited or anything!

No no, huffpuff, of course not 6 more days to go...

I was supposed to have the dressing changed from my operation yesterday. I had to cancel my appointment today, so it is finally happening tomorrow. I hope it will be ok! I think the lump of plastic from the port has been worse than the crumpled implant. Where is everyone?

omg huffpuff. that is great news. this time next month you will be feeling more and more better. I remember being quite sleepy for a long while after the end of chemo, so take it easy.

lalaa - you're right. I think i'm gonna get frustrated with my recovery as i'm expecting to be back to normal just because my chemo has finished. Still - at least the chemo will be finished!!!!! Last one is on Monday 15th Sept - so technically this time next week i will be done with chemo!

Bladebla - hope all goes well tomorrow XX

I know exactly how you feel Huffpuff. I have my last chemo a week on Friday and I am almost looking forward to it because it is the last. I say almost. I am not actually insane.

I have a bit of a funny side effect. The taxotere has made my fingers and toes a bit numb. It means my typing is a bit hit and miss but it wasn't really bothering me. Then I got some new shoes. I thought they were really comfortable until I took them off after wearing them all day and discovered that my feet were in a complete state, I have lost some toenails. .

I am in the strange position of blessing victoria beckham for her new haircut. Ultra short is now ultra fashionable Hurray!

Hello ladies!

Had my last clinic before my last chemo yesterday - good news! My oncologist said that there has been a "complete response" to the chemo and that there is a possibility i might not need a mastectomy!!

So.... don't know whether i've told you but i've got my last chemo on Monday then a month off then an operation and then meeting my oncologist at the beginning of NOvember to discuss radiotherapy.

Am feeling very happy and positive and hope you are all ok XXX

Wow, Huffpuff, what fantastic news!
I've had my little operation to remove the port and tubes from my implant. It's now nearly 3 weeks ago, and I'm beginning to feel almost normal apart from being slightly bruised still. Hooray!

hello all, fab news huffpuff, let's hope it stays that way.

BlaDeBla - you're on the up!

I have a date for my reconstruction op - it's in late November, I'm going to Boston for it.

I'm busy trying to get fit, doing an hour to an hour and a half exercise every day, trying to get my body in shape before I get sliced up again! At least this time the op will not be because I am ill

pigleto I remember the numbness and nail problems being explained to me as a possible side-effect. What a pain! At least the numbness will stop you feeling so sore. But you won't know when you've injured yourself

where are you all?! Couldn't even find this thread in active convos and had to search for it!! Hope you are all ok.

had my last chemo on 15th sept and had a pretty low week following that - spent most of it in bed feeling absolutely shattered. Last week was better and this week i am feeling human again.

Seeing surgeon on 9th October to discuss what operation he thinks i should have (lump or boob removed) and then i will have the op 2 weeks after that.

Someone please come and chat!! X

I'm glad you're feeling a bit more human again, huffpuff. I hope all the chemo has gone well and that you are feeling part of the world again soon.

I've started wondering whether it would be nice to have a nipple. I have started to be able to feel my new boob a bit more, rather than be rather frightened of it. At least it isn't sore and now the bruising has gone after my little op.

Just watching telly at the mo, but well done for finding the thread again!

hi Bla - thanks for the reply. Sorry if you've already mentioned this somewhere but did you have your reconstruction done at the same time as your mastectomy?

glad your chemo is all over huffpuff.

I have finished my chemo (hurrah!) and starting radiotherapy next week. Getting my tamoxifen on Friday which I am both looking forward to (I don't want any gaps in treatment where my cancer can start growing again) and slightly dreading.

I am going to have to take these pills for five years or the rest of my life. I do hope the side effects are not too horrid.

Dh has done some reading about taking zoladronic acid along with the tamoxifen which a recent trial has shown increases its effectiveness by up to 30%. I am going to have to see if I can get this on the NHS or if we are going to have to go private again. I hate having to worry about whether the NHS are going to give me the best treatment or just the most cost effective. I just don't trust doctors after all the mistakes they have made. I hope the compensation they paid me for their fuck up will cover the extra treatment.

Huffpuff, I hope you get the outcome you want from your appointment next week. Don't get worried about the surgery, it is much less unpleasant than the chemo imo. Also I wouldn't worry too much about whether it is a lump or mastectomy as they are getting so much better at reconstruction these days.

Some days I am tempted to get the other boob off to match, just to stop the worry about that breast going cancerous.

Bla - what sort of nipple have they offered you? Is it just a tattoo or are they thinking about grafting on some pinker skin?

I am feeling a bit black today. I am so worried about the cancer coming back that I can't get on with the life I have left. It is not remotely helpful to read the cancerbackup site and find that my feelings are so obvious and common that it is what most people feel in my situation. I don't care if my feelings are common; the emotions are fresh, new and terrible to me.

To those people further down the road: Is there anything that helped you get out of this emotional black hole?

Yes, I had the whole lot done at the same time. I was diagnosed with DCIS, so they reccomended that it was all done together. I had the lump taken out about a month before the diagnosis, so I had a dip in my boob, as though a scoop had been taken out.

When they did the mastectomy they also took out some lymph nodes. Will they be taking out your nodes too, huffpuff? I guess they don't do that if they're removing a lump and not the whole breast.

TheMadHouse, I've seen this thread and mentioned that you might be able to provide some advice (sorry - volunteered you without asking!)

www.mumsnet.com/Talk/general_health/619804-unusual-i-dont-know-if-it-is-unusual-amount-of?msgid=1262 7032

How are you doing?

Could someone please start a new thread as this is getting a bit long? I had a go but I couldn't think of a witty title.

I had my ovaries ablated yesterday by zolodex implant. Ouch. I am glad I didn't have any warning about that because it really stings. I will have to have it done once a month. That means another 43 times over 5 years . I am having zometer infusion next friday which is supposed to be relatively easy (flu like symptoms for five days). I start radiotherapy on Monday.

I have a constant throbbing pain in my hip joint. This is NOT a good sign. My oncologist said that he didn't recommend doing a bone scan as it could only confirm bad news, it can't give an all clear, and I am already having all the treatment they would give for secondary cancer of the bone anyway. I am going off my head with stress about the whole thing. I am perfectly capable of making up all these symptoms through worry. I am so scared. Seeing my GP on monday to see if she can give me any magic pills to chill me out a bit.

Sorry to be so depressing, but I'm miserable. I could be a side effect of all the drugs I am taking. My best friend had a baby yesterday at about the same time I was being put into menopause. I am very happy for her, but so jealous and sorry for myself.

Pigleto I'm sorry you're having a rough day.

I followed your story vaguely (am name changer atm) and have been rooting for you throughout...it amazes me how you've got through so much sh*t and are still sounding Ok - yes you do - but I know you must be inwardly going through the mill.

I'm not in your shoes but am also ill and facing uncertainty. Also having a very dark weekend. The rain doesn't help much does it?

It is horrible thinking about not having more babies especially if those around you are having theirs with healthy years ahead of them. I find it helps not to think about it at all really...that's the only way I've found to cope with it.

I hope the pain in your hip is just something you've pulled or similar. It might well not be anything sinister but I suppose one's mind just runs away with anything like that...I know I do the same

just wanted to say am thinking of you anyway x