TAMOXIFEN thread number 8 ********

[MaryAnnSingleton]

just in case we run out of space !

I'll bet.

I was told by a very senior medic that I met in the course of my work, not treatment, that the first two or three years are the ones where you have to be the most cautious, and that's what i am living by at the moment. But if you have to date from the end of treatment, not from diagnosis, I am not as far along as I thought. Only 16 months. Bum!

Well it was a baby Onc who told me that Cakes, so she could have been wrong.

Blimey Kurri. Poor you.. Definitely get onto the doctor. do you get any warning at all? Do you feel okay today?

On Mammograms, I have them annually from now on, but I haven't a clue is that's normal or not. I had a mastectomy too, so they're for the remaining breast. Am not so worried this time, as apparently my main chance of recurrence is in the skin remaining after the mastectomy. Like Cakes though, I was told the first two years is the time it's most likely to come back, so you're just past that, aren't you??

Cross post - the 'I'll bet' was about smee's holiday....

KK - I think a yearly mammogram is for lumpectomies, but i'd check if i were you. Sorry about the fainting, how very embarrassing. Don't worry about shopping there though, I'll bet they can't remember what you look like, they just know that a gorgeous lady went all funny for a bit. I really think you should ask the doctor how long it goes on for, it could be dangerous.

I hope you weren't wearing a skirt, and that you went down in a decorous, non knicker-showing kind of way.

The play sounds fab, your ds is so talented. Did you cry when he came on? I always do when dd comes on in the school play

Dating from the end of treatment sounds sensible, TBH. Rats.

Sorry Cakes. Didn't want mean to put a downer on your day. Forget it and think of the tax refund.

I am fine now thanks everyone, in fact I was fine by yesterday afternoon - I spent it gardening. And I went to yoga this morning, so no after effects - its just about 10 -15 mins of feeling a bit wobbly afterwards.

Fortunately I wasn't wearing a skirt. But it wasn't a decorous Victorian lady swoon, it was more 'DH I feel a bit funny' then slumping down into a grunting untidy heap I did manage to keep my knickers under wraps though (I think)

If we are counting from end of treatment, then I am only 7 months on, that's depressing - I think I'll stick to DX date

Ooh yes forgot to say congrats on the tax refund.

Gawd, what have I started?! Kurri, are you thinking it's from when you finished Herceptin? If so, I'm not sure that counts. My Onc told me it was from the from the end of Rads, which means Tamoxifen doesn't count, so am guessing Herceptin wouldn't either. Glad to hear you're better today. How often a week do you do yoga? Am most impressed.

Ooh - good that herceptin doesn't count that makes it 19 months since end of rads. - that's better

I do yoga twice a week. I'd go more often if I could afford it, I really enjoy it. I do some at home, but it's easier in a class I find.

Gosh you lot are confusing! Hopefully you'll have sorted out the proper yardstick by the time I've finished whatever-it-is-that-actually-counts

I got a nice fat tax refund today too but in the same post came the council tax bill which took the shine off it a bit

Cakes I am dead impressed with your DD and her blisters, well done to her!

My boys' classes each have to do colours - have just sorted DS1 with purple bits and pieces and am assuming we'll find some blue around for DS2 to wear.

Kurri your DS's production sounds really good, so long since I have been to any live theatre. Used to do a bit of AmDram myself. Hope you don't have to put up with this fainting lark for much longer, but pleased to hear Sainsbury's looked after you well - wheelchair and first aid room - excellent! Free tea and cake?

MAS Hope Celeste is calming down with the collar. I'm afraid she can't be allowed to bite the stitches, too risky. Our cat used to eat 'wet' food mainly and was hardly ever seen drinking, and was fine if that's any comfort.

Figgy hope you are comfortable now and able to eat. What a nightmare.

So that means I'll be 2 years post active treatment at end of July !
KK - what a whirl- I have fainted twice in public and the second time was on victoria station (tube line) -I kept being asked whether I was on drugs !! it's all very embarrassing.
Ds says they're having a mufti day at school on Friday - I can remember past red nose days where he had red in his hair (I used red food colouring)
So glad that Under Milk Wood was good - clever ds KK
Celeste is a bit more chipper this afternoon- eating more -have given her chicken and some Sheba fancy terrine and a bit of dry food -am sure she must be drinking a bit -she can get her head into the bowl. I'm off to book group tomorrow and it's being hosted by my friend who owns Celeste's twin sister Scout -she had the op last Monday so will be able to see how she's doing.
And - hooray- have finished the 2nd book- so now ready to work on Cakes' and RWU's pictures-just got one to do for someone else first- and I can also get thinking about the bc book.

Yeay for MAS. That's brilliant. You'll have to celebrate when you get to the end of July. My Onc said within two years is when you're most likely to have a problem. Good to hear Celeste's a bit brighter too. Treats are fair enough, I say.

While we're waiting for pics of Orlando, thought this might amuse. The black cat with the nail file looks suspiciously like mine.
www.milkmatters.co.uk/cats/

LJ, you were so busy mentioning everyone else, you didn't say how you're feeling. Hope not too bad.

Hope Figgy and LGF okay today too. Kurri, you take it easy tonight too. Definitely no more fainting.

This site has a new piece of research from Canada re muscle loss and nutritional issues whilst undergoing chemotherapy it may be of interest to some of you

www.takeomega3.co.uk/blog/takeomega-3-high-epa-supplements-may-help-chemotherapy-patients

I can barely keep up with you guys. So a brief summary then....

Holidays yeah

Fainting boo - get thee to your gp Kurri

Orlando yeah

Celeste well not boo, as she is gorgeous and the collar is short lived, but I'm sure she feels boo

Total confusion as to when to count being clear from or is that just me now?

Under Milk Wood big round of applause how fab to watch your ds do something so brill kurri.

Finishing book and starting next projects yeah MAS

Tax refunds double yeah

Hope you are both feeling a little stronger today Figgy and LJ. How are you doing LGF?

Had the rheumatologist today for me, just pottering on really, last lot of x-rays looked good for me so that is great. Surgeon appointment tomorrow evening, when I will finally find out what exactly they removed from my left breast, and why, fingers crossed for needing no further treatment, but I am prepared.

I hope everyone is having a good evening.

Hi Sparkle, I'm glad the x-rays are looking good, and I hope everything goes well at your appointment tomorrow and you find out what is going on,- you've had to wait so long, and have been incredibly patient about it all.

I hope you don't mind me mentioning it, but I noticed there is a live webchat with Diane Abbot (shadow health minister) tomorrow here. Just in case you felt like asking her if she has any suggestions about how to get the help you need for DS. Just a thought

Hi ladies, just checking in to say hello but have a massive headache so to just want to crash out.

I have had a busy weekend with DS1's biirthday celebrations and have been at work all day, so I think its all catching up with me. I have taken my temperature which is 36.4 so thats ok. It is probably just tiredness :(

I will try and catch up with all tomorrow after I've had a good nights sleep :)

How do you all deal with the fear of it coming back? I am really struggling. Just coming across an article, hearing a story about someone i've never met, it terrifies me. I finished radiotherapy at the end of last year...how do I learn to live with the fear? I'm a single parent with four amazing children. The thought of not being here for them is intolerable.
Thanks.

Hi meandmyfour, and welcome to the thread

I really sorry you are struggling at the moment, it is such a big life changing thing that it takes an awful lot of getting used to.

I think the fear you describe is a very natural reaction, I certainly feel scared sometimes, and I'm sure others do too.

If its of any comfort to you, I would say it is more under control now (just over two and a half years since DX) than it was in the early days. You are still very close to the end of your active treatment, so things may improve with time.

Is there anyone you can talk to about your fears - a friend or relation? I think it sometimes helps if you can express them out loud. I am guessing you put on a brave face for your lovely DC, and keeping that up all the time can be hard going.

I can tell you how I cope - if that's the right word. I try to keep busy and active - reduces thinking time.
I do yoga to calm myself down. Sometimes I have a good cry.

I take anti depressants.(not saying you should - just telling you my coping strategies!)

I still get a jolt when I read or hear upsetting stories about other people. But I also try to tell myself that lots of people go on to make a full recovery, and lead long happy lives, I've met women who are ten, twenty years from DX and still going strong.

I know anecdotes about other people is largely irrelevant - everyone's illness is individual to them. But I think logically if you listen to the unhappy stories, you need to listen to the happy ones too (easier said than done I know!)

It is also possible that you are still feeling exhausted and worn out from your treatment (I don't know if you had chemo as well as rads, but I both can make you feel pretty knackered for a good while afterwards,) and that tiredness will tend to make you feel more emotional.

The other thing I should mention is counselling - my BCN arranged some for me (or you can ask your onc., or your GP) And I was able to talk about things I couldn't necessarily say to my close family, because I didn't want to upset them. But it let me talk through some of the fears.

I'm sure lots of folk will be along tomorrow to give you advice - probably more coherent than my ramblings , but I wanted to say hello, and I hope you will find this thread useful for support. xx

Sorry you are feeling tired and headachey LGF, - hope you get a good night's sleep and feel better tomorrow

loads of good thoughts for you tomorrow sparkle xxxx
LGF -hope headache goes quickly-take care.
meandmyfour -hello -welcome too- I think KK's advice is really good -have nothing really to add. In my case I have to say I honestly don't fear much - I worry about everything else in my life so I think it's a kind of displacement. I have ocd which I have had a huge amount of help with since my diagnosis-a lot of emotional support from my bcn and I have had counselling sessions with a Cruse counsellor (for long standing grief-the basis of my ocd ) and I recently completed a course on Mindfulness Meditation for stress reduction-which I can highly recommend. I meditate every day and feel a good deal calmer.

thank you so much KurriKurri and MaryAnn...I know I don't help myself with my continuous thoughts obsessive worrying! I can be fine and then come across an article/negative story and be plunged into pure panic. I read the Sunday Times this weekend and there was an article about a young woman and it's just haunted me ever since. I've had chemo, mastectomy, radiotherapy and am still having herceptin/tamoxifen.. It's hard to know what's what - exhaustion from my triplets/all the treatment/worrying,,,all I have to do is cough more than once and I'm convinced it's something more.
Everyone says the first year is the hardest..I'm too scared to do much reading and I dont' do any googling about breast cancer but at the same time my imagination is probably far worse than anything I could read!

love to all of you x

Meandmyfour - your worries sound so familiar, I think we are all the same to some extent, at least, and you are still so near to finishing. In fact, you still haven't finished really, as you are still having the herceptin so it's hard to get away from hospitals and illness. As KK said, you are probably still absolutely exhausted, especially with triplets to care for.

I am still worrying over every symptom that lingers for more than a day or two, and I am also drawn up short by other people's stories - like Waking the Dead last night, which was full of people in head scarves and apparently getting treatment for cancer.

But I think it does get better. I am less bad than I was - i am about 12 months ahead of you in terms of when radio finished.

Whenever i worry about something I have heard, DH just says - 'But that's not YOUR story' and i take a deep breath and try to move on. I an trying to live healthier, and to enjoy each day.

No magic solutions - just dangling the carrot that it does, slowly get a bit easier.

MAS - well done with the book. I really will get my act together and send stuff, in that case.

Just checked out smee's cats - I particularly like the tabby thumb that comes up right at the end. Genius!!

Those cats are funny aren't they.

Hello meandmyfour. We must have been going through it all at the same time. I finished rads in December too. Also had mastectomy and chemo and am on Tamoxifen now.

What you describe totally chimes. I know it's kind of obvious, but I concentrated so hard on getting through treatment that I hadn't thought through how to cope with living once it was all over iyswim.

My BCN described the time immediately after treatment as one of shock and reflection. Without the slog of treatment you have space to realise what you've been through, and part of that is obviously the fear of recurrence. She said for some women it's akin to Post Traumatic Stress, which I thought a bit ott at first, but then when she listed the things we've been through, so operations, bits of body lopped off (!), poisoned, burnt, even the trauma of hair loss, which let's face it isn't easy..! Well maybe she has a point.

Kurri's right (I hope!), so am trusting that with time it'll get easier. Also, am guessing you're probably still knackered like me and getting used to the Tamoxifen (I'm not having Herceptin) takes a while. I have more energy week by week, but still feel quite achey and irritable too some days.

Swimming's been good for me both physically and mentally. I know a lot of people on here do yoga, so I might try that. I doubt you've got much time with 4 kids - I only have one, so I totally take my hat off to you. How on earth do you do cancer treatment alone with 4?! How old are they all?

Another thing that's helped me is very good friends - BF in particular, who has been there every step of the way and still is. I often talk to her in a way that I can't to my DH. Something about a woman's intuition I think.

This thread is really brilliant too. Just knowing everyone on here has been through something similar. We all have the same fears of recurrence, and there's definitely strength in connecting with others who get it. I've found that ever so useful. Why not come here and talk to us a bit more? If nothing else, we can distract you.

Blimey, I don't half go on. Better get some work done.

For those yesterday by my hospital not having heard of mammograms, you'll be relieved to know they have decided they do know what they are and I can have one. Hooray for medical science.

LGF. Hope that headache went and you're okay today. What day are you on? Should be rising back to feeling alright again soon.

Sparkle, good luck with your appointment later. Will have fingers crossed for you. Put a bottle to chill.

Hope all others are good today.

I wrote a post that seems to have disappeared. it was long and rambling, but the upshot was that relaxation and making time for yourself helps, meandmyfour, I know that may be difficult for you in your circumstances.

Stay here and talk with us about it. A worry shared is a worry made a bit smaller, especially if you are sharing it with people who can honestly say, 'Oh, me too'.