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**TAMOXIFEN TEN***

993 replies

MaryAnnSingleton · 20/05/2011 08:51

brand new shiny thread....our tenth !

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smee · 16/06/2011 09:17

Topsy, my son was younger than your two, but I'd say be honest but really stress the positive. That's what we did and it worked v.well. So we said that cancers scary, but that what most people don't know is that it's very common and that breast cancer affects 1 in 8 women. Stress maybe how you're lucky as you found the lump, as if we hadn't it could have been very, very serious. But as you found it, that's good news, as it meant it was fixable. So the operation took all the cancer cells away, and was very successful. That the chemotherapy/ radiotherapy is just belt and braces. That once all the treatment's over you'll be fine again. I think it's important to admit it's scary, but also fair enough to give them the most positive (and true!) version. My biggest fear was well meaning adults showering my son with worry, so I wanted him to be able to know enough to shut them up. Grin

cakesandale · 16/06/2011 09:51

I think all the advice here for Keeping and Topsy is really, really sound. I can't add much.

As regards telling children about cancer, my dd was the same age as smee's ds, and our approach was similar. It is important to tell them about things in advance, I think (eg hair loss) so they are forewarned when well-meaning adults start saying things that they can hear. It may be a good idea to take them to a check up or bcn appt - just one, which you expect to involve no undressing or difficult talks, so they can imagine where you are going at other times, and realise that it is all pretty normal and unthreatening, and see how many other people are going there too.

Telling their teachers is a good idea, as they may mention it in school. My dd did chat to her teachers about it, they were prepared, and they were fabulously helpful and reassuring (it did help that her class teacher's Mum had had bc and was fine 10 years post treatment).

I also had a wig which was never worn as I looked like a man in drag in it. I just wore scarves, even to business meetings and it was fine. At our hospital there is a wig specialist who comes in, and she has a good selection of wigs that are NHS subsidised. My contribution was about £60, I think. But don't let my comments about my wig put you off getting one if you want to. There were many, many women wearing them in the chemo unit and you really could not tell. I thought I was being hard done by as I was the only person to have lost her hair - the head chemo nurse had to give me the heads up.

I'd suggest the way to get the right wig for you would be to take along a friend whose judgement you trust when you go for the fitting. Good luck!

cakesandale · 16/06/2011 09:53

Off now to buy a new mobile phone. Groan.

topsyturner · 16/06/2011 09:59

I have that book "Mummys Lump" , the BCN gave it to me .
I have to admit , it's in the boot of my car , along with all the other books and leaflets they gave me !
Can anyone say DENIAL ???

I was thinking of telling them something along the lines of I had a lump that was cancerous . The doctors got rid of that lump , and now the chemo and radio is just to "make sure" its all gone .
That I will be a bit sick , that I will prob lose my hair , but that this is what it takes to make sure it has all gone , and it will all be over with in 6 months anyway .

I suppose I should really get those books back out of the car and have a look eh ?
This is the part of it all that I really am dreading .
The surgery was a breeze in comparison , and I really wish I didn't have to put this load on them . Sad

cakesandale · 16/06/2011 10:21

i think we all feel that this bit is hard, topsy. What you are planning sounds fine to me.

I too didn't read much of the stuff that was given to me: other people read every word and do their own research as well. Both approaches are valid. It's just a question of how you cope with things. Denial works best for me too.

I refuse to be an expert on this topic: I want to know as little as possible, and spend as little time as possible thinking about it.

You are your kids' Mum. You will know what to say when you start, and they will ask questions which will naturally take the conversation on. If they know people who have had cancer and then died, try to think if others who have had it and are fine so you can give examples. Kylie Minogue maybe.

Really must go and get that phone now

MaryAnnSingleton · 16/06/2011 10:26

I think there's a new downloadable publication from BCC about school and children -what to tell your children's teachers or some such- will go and look.
I didn't actually tell ds anything outright which is not a good thing -I wouldn't recommend it- as long standing threadees will know,my family tend to be very 'let's get on with it' and not given to wailing and gnashing of teeth. So he kind of picked up on it along the way - I hope he is ok about it all- he seems to be and does ask occassionally about things. I do think honesty is best and telling children what they need to know (that you'll probably be feeling a bit poorly after your medicine and the medicine might make your hair fall out - but that shows it's working etc) The BCC thing about this is pretty good -I've read it since.

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MaryAnnSingleton · 16/06/2011 10:29

here topsy

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smee · 16/06/2011 10:50

What you're thinking sounds good to me, Topsy. btw, that book 'Mummy's Lump' - be very curious to hear what you think as I thought it was dire. Incredibly negative - lots of emphasis on everyone being worried and scared and very few facts - actually I don't think there were any. I gave it back!

Off out to lunch with an old friend in a bit. Incredible rain here - like being in a monsoon.

keepingsecret · 16/06/2011 11:03

Just got in from the doctors, my mum came in with me when i spoke to him. He will write and ask them to screen me but, he said to be prepared for them to say no as there are no other family members except for my sister and my Grans two sisters (years ago) who have breast cancer. My Mum bless her has said that if they say no then she will help me pay to go private!

MaryAnnSingleton · 16/06/2011 11:07

aw,bless your mum keeping..I think peace of mind would make it well worth it.
Am still thinking of my book about telling children about bc (mentioned this some time ago as there is clearly a gap in the market- am a bit nervous about proceeding as it's quite a scary project to tackle !) Am gathering all your thoughts and ideas though.

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KurriKurri · 16/06/2011 13:32

Hi all.

Topsy - telling the children what will be happening is tough, but they may well surprise you with their resilience, and you will feel better once you have explained it. Everyone gives good advice - I can't really add because mine were 18 and 23 when I was DX, - so a different approach from younger ones.

Keeping - fingers crossed they will give you your screening, but bless your mum for her offer to pay. It is worth it to stop you feeling anxious. Smile

Well I have cycled 15 miles (round trip) and done a yoga class in the middle of it. So I'm feeling rather virtuous. On the way, there is a small hump backed bridge, so I was pedalling hard to cross it, and I saw an oldish bloke wandering about in the middle of the road - he was pulling a fishing trolley thing, and obviously looking for the best part of the river. But he didn't see me and I had to sort of swerve round him, and he shouted 'bloody kids' at me GrinGrin - I am taking that as a compliment!

Oh and the woman who takes the yoga class is a doctor and she said a square of dark chocolate every day is good for you - so I thought I'd pass on the good news Grin

love to all, hope no one is feeling too awful, enjoy your lunch Smee Smile

cakesandale · 16/06/2011 13:35

MAS - I'd quite like to have a go at writing that book. I expect there is someone that the publisher had in mind but, if not, would it be worth a speculative sample chapter and pics? You know better than me how to go about this, but it's something I was thinking about quite a while ago (as were you, I know). I'd like to do something helpful and upbeat, some of the things around are rather scarier than they need to be...

Got a new Blackberry! Very businesslike, I even resisted the temptation to go for the shocking pink chrome option Now all I have to do is learn how to use it (and it is here that I usually stumble)

cakesandale · 16/06/2011 13:36

Keeping - bless your lovely Mum. I hope you don't need to go private though. I am sure the GP will sell your need hard for you. How is your dsis doing?

KurriKurri · 16/06/2011 13:36

MAS -I have messaged you Smile

cakesandale · 16/06/2011 13:52

KK -missed your post but I am in awe. I couldn't cycle 15 miles!!!! Grin about the old bloke though. How very flattering!

lottiejenkins · 16/06/2011 14:24

This reply has been deleted

Message withdrawn at poster's request.

cakesandale · 16/06/2011 14:44

How very intriguing....

MaryAnnSingleton · 16/06/2011 14:44

KK- have replied !!
Cakes- just wrote a response and it disappeared- but yes,that is an excellent idea and I'd be really interested in a collaboration - I was thinking of approaching my editor at Macmillan to see if she might direct it to the right place there,or else my agent,who regularly deals with illustrator's own books. I reckon we'd need to provide a synopsis and about 2 chapters - I think it could work really well,plus the marketing bonus of both the author and illustrator knowing what they're talking about - a very good USP as they say -let's discuss this further !

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cakesandale · 16/06/2011 14:50

Great! I'll have a proper think and get back to you!

MaryAnnSingleton · 16/06/2011 14:55

exciting !!
what was that deleted post then ?

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cakesandale · 16/06/2011 15:12

I have no idea! I looked at Lottie's profile and she doesn't look like the sort of person to post the kind of odd posts we sometimes get (ie she has a profile). She looks like she has a lot on her plate to be honest. I hope she is OK and hasn't just bottled out of talking to us. Maybe she'll be back...

topsyturner · 16/06/2011 15:16

cakes - that's actually a really good idea about bringing them with me to one of my appointments . Both my children respond very well to any medical treatment they need , as long as it is explained to them . And not in baby terms . If they are going to have an injection , they need to be told its a needle and not just a small pinch !

And writing a book for children is a great idea too .
Mummys Lump (dire or not !) Is aimed at children that are much younger than my 2 . But I don't feel they are old enough for the adult information out there .
Feel free to use me for research !

Have my sons end of junior school play tonight . They are performing Cinderella Rockafella . And he is playing a talking dog !
He finishes junior school for good next week on Thursday .
The schools over here (NI) break up a month earlier than on the mainland . So my daughter finishes the following week too .
Aaaaaaargh , occupying them both whilst having chemo is going to be fun !
Researching summer schemes .

Someone told me that Macmillan offer grants to women with breast cancer , to cover things like expenses , heating costs , childcare , etc .
Has anyone used this scheme ? Is it painless ?

There is a Macmillan center adjoining my cancer hospital (I kid you not , we have a dedicated hospital for cancer in NI called Belfast Cancer Hospital !!!)
So I might call in on Monday whilst I am at the oncology dept and speak to them .

Anyhow , off to do homeworks and kiddie related things .

cakesandale · 16/06/2011 15:23

Thanks Topsy, you would be a useful research subject. Prepare to be interrogated!

I don't know anything about grants, sorry. It never occurred to me to look

Summer holidays during chemo are challenging. But you'll get through. They should be old enough to cut you a bit of slack. Imagine doing it with babies My dd was just 6 at the time, 2 years ago. I can remember her tormenting me when I was feeling a bit weedy immediately following a dose, and she turned loftily to me and said "Mummy this medicine thing isn't very fun for me" Shock Grin

I hope you have a fab time at the play. Take plenty of hankies Smile

KurriKurri · 16/06/2011 15:24

Good idea to contact the MacMillan Centre Topsy - I've always found them very helpful and understanding, and I think you may be right about the grants - certainly worth asking about.

KurriKurri · 16/06/2011 15:25

Cakes and MAS - check inboxes Smile