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Original poster

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

558 replies

anorak · 14/03/2008 21:25

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.

OP posts:
lalaa · 23/04/2008 11:08

Margaret - nice name change!

MargaretMountford · 23/04/2008 11:12

!

Original poster
anorak · 23/04/2008 17:49

Who are you Margaret or am I being thick?

My oncologist called me today and is arranging to re-refer me to the other lymphedema therapist so I should be able to start treatment next week. Apparently he wasn't aware that the hospital clinic had such a big backlog when he referred me there.

Which just goes to show that you have to get stuck in yourself to get the best treatment

OP posts:
MargaretMountford · 23/04/2008 17:51

I am MaryAnnSingleton normally but am being MM while the Apprentice is on - am here to support SIL & my friend

Original poster
anorak · 23/04/2008 17:53

Oh I see - I don't get to see the apprentice here so the name meant nothing to me.

OP posts:
MargaretMountford · 23/04/2008 18:05

oh you are missing out ! didn't want you to think I was just lurking !

lalaa · 23/04/2008 18:35

anorak - that's great news. and interesting that it's not just in our NHS system that you have to project manage your own treatment!

pigleto · 24/04/2008 12:23

Hi all. Good news!

PET scan came back clear which is a huge relief. I have sent my blood off to be tested for the BRAC gene and my UK oncologist has agreed to give me nulasta during my chemo if I have it privately. I am flying back to the UK today to start chemo tomorrow [scardy cat emoticon].

The oncologist here said that my remaining breast was so firm that I would need to have MRI scans instead of mammograms to check it as it won't squash, which is why they couldn't see the tumours when they did my bad one. I am strangly proud to have firm breasts even though I only have one left now and not for long if the gene test comes back positive.

Thank you for your support. It is so nice to be able to vent. I can't rage or fret at my family as they feel the need to look after me and I don't want to make their job any harder than it is.

Original poster
anorak · 24/04/2008 12:48

Perhaps you can rage or fret with them? They might want to rant as well - seeing a loved one go through this is sure to make them feel angry too.

I'm so glad your PET scan was clear, pigleto. The US clinic sounds excellent. Hurray for your uncle!

OP posts:
JRocks · 24/04/2008 15:10

Great to hear you've had some good news pigleto, hope that continues!

TheMadHouse · 24/04/2008 20:02

I am so happy that you have had some good news . Thanks Uncle Pigleto.

I do hope the news is good on the BRACA gene

ThingOne · 24/04/2008 20:17

That's good news, pigleto.

lalaa · 25/04/2008 09:53

Fabulous news, Pigleto. Hope your first chemo goes OK.

TheMadHouse · 25/04/2008 14:25

I hope the flight back was OK and that the first chemo is OK. Take care Pigleto

Feeling a bit down today, cant but help feeling a fraud sometimes, you lovley ladies are coping with cancer, all the treatments and side effects and here I am knowing that I could get it and only have to have surgery to prevent it - sorry

Original poster
anorak · 25/04/2008 15:16

Don't be sorry, TheMadHouse. In a way your stress is worse, you've got to decide whether to mutilate your body just in case. For most of us, these treatments are necessary so we don't have these terrible decisions to make. I can understand how stressed you must be.

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BlaDeBla · 25/04/2008 15:59

I'm sort of in the same situation as you, TheMadHouse in that I have had a mastectomy (just one side) and for now have no further treatment planned.

A mastectomy is a serious operation, and it still takes a while to get used to it and come to terms with your body sort of not quite being yours any more. Please keep posting - there are all sorts of people at all sorts of times dealing with BC. It feels as though I am finally beginning to get a bit of energy back - I dug up loads of nettles and in a sudden ( and probably misguided) burst of enthusiasm have started stripping woodchip from our bedroom. What horrible horrrible HORRIBLE stuff it is!

I think my arm may be slightly swollen. I can't really tell by looking at it, and I'm too scared to measure it.

Original poster
anorak · 25/04/2008 16:59

BlaDeBla, I hope that doesn't mean you've got lymphedema on top of everything else but do get it checked - early treatment is the key with lymphedema, you mustn't leave it as there are irreversible complications.

OP posts:
Blu · 25/04/2008 17:15

LaLaa - I remember you posting when things were very grim for you...I have often wondered about you and not seen you around on MN - I am so pleased that you are doing so well - alongside your ongoing issues with genetic factors and so on, and so on...

lalaa · 25/04/2008 18:16

. Thanks for remembering me!

ThingOne · 25/04/2008 19:37

I don't think anybody should feel a fraud for feeling anxious and making big decisions. I haven't really had a choice - sometimes it does help to have to do something.

I've had a bit of a week. I saw my oncologist yesterday and my next dose of chemo has been delayed by a week as I still have the cold I had when I had my last lot (two weeks ago) and I got quite ill (I was neutropenic). So quite good news, really as I'll have an extra week of feeling almost normal . Should I sort the filing or go shopping when the kids are at nursery?

I saw my surgical team today for follow up of a complication I have and I was booked in for a knocked-out look-see next Wednesday. Eeek - a bit of a shock but best not to have time to worry, eh? Should be getting a nice spinal so they can examine me properly and see what needs doing or what they can do. I have necrosis in my vagina so I'm pretty keen it's fixed as one is dying for a shag, never mind one's husband .

Tickle · 25/04/2008 22:29

Hi everyone!

Pigleto, lovely to hear you PET was clear Hope your journey back was OK, and the chemo goes well.

BlaDeBla - am with you on the woodchip - our house is covered in it. Is your arm feeling better? Maybe it was just feeling funny after all that pulling and stripping (oo-errr )

ThingOne - hope they manage to sort you out on Weds - for yours and DH's sake

sending love
T x

Original poster
anorak · 26/04/2008 13:19

Oh yes Tickle, maybe it was the wallpaper stripping that made BlaDeBla's arm swell up - let's hope so!

ThingOne, what a worry for you - I hope it's easy to sort out. My DS was talking about Thing One and Thing Two at dinner last night and I told him there was a mummy on mn called ThingOne, he wanted to know if there was a ThingTwo as well

OP posts:
pigleto · 26/04/2008 21:13

BladeBla my consultant specifically told me not to do repetative strain movements like weeding and scrubbing as they are particularly likely to build up the lymph in your arm. I am terrible though as I keep forgetting and lifting my little girl etc which I shouldn't do.

Dh has a chart of my weight, temperature, calorie intake and arm circumference on the computer as he is v nerdy and likes to be in control. He is currently avoiding all phone calls from his best friend as he can't bear to tell him the news, the great soft lump. I may have to ring him myself, but I might howl which would be a bit unfair.

My chemo went OK. The cool hat thing was quite funny, cracking headache for 10 mins but fine afterwards. I took the laptop with me and watched a movie. The two old codgers in the same room being treated looked dead jealous. The injection was quite painful as the stuff was straight out of the fridge so it felt horrible going in. I haven't had much nausea, just night sweats and a bit of joint pain. So it is not as bad as I thought it would be so far. I am not keen on doing it all again seven times though.

I hope your op goes ok thingone. Sex is one of the few vices that I have not had to give up for the chemo. I would be deeply bothered if my vagina was out of order.

ThingOne · 26/04/2008 21:22

Lol Anorak. DS was teeny and I had just bought him a ThingOne tshirt when I joined MN. I do indeed now have a Thing Two but being a deprived second child he has never had a Thing Two t shirt. And the nanny has hidden the books as she said she couldn't bear to read them again . I share her view as my tongue is exhausted about half way through and one Suess is never enough zzzzz.

Pigleto, my chemo suite has DVD players to borrow. You take your own DVD and headphones but hardly anyone does. I take the West Wing and enjoy a bit of escapism .

TheMadHouse · 27/04/2008 00:55

An oput of order vagina - well I never. Must get it fixed, glad to here that you have an engineering call booked though

Welcome back to the UK Pigleto

Sorry for my self centred e-mail the other day. I was feeling particularly sorry for things. A friend who is 19 weeks pregnant and has a little girl the same age as DS1s husband had just had brain surgery and needs it again

Life is just so unfair sometimes