**t*a*m*o*x*i*f*e*n** number 14

[MaryAnnSingleton]

here we go !

Thanks, so quite a variation in the gap before rads. I rang the nurse and she said about five weeks time from now (ish). So hopefully all done and dusted before Christmas.

Jane, "rads planning" sounds complex! The nurse said that treatment is very individual and on that basis she wouldn't talk statistical outcomes with me (GIVE ME A NUMBER! [joking]). She said the oncologist would, if I wanted to know, but actually it might be better not to know as I am an individual and not a statistic.

Kurri, that's so interesting about the body shutting down. To understand that takes the pressure off trying to achieve too much too soon.

I feel quite tired and I haven't had any treatment yet (mind you, biopsies, blood tests, scans, mammos etc take their toll). I'm taking it easy at home now (instead of Plan A which was to Spring clean my house in readiness of convalescence). I can hardly get through the usual bits at the mo. But no guilt or frustration. I'm conserving my energy for the important bits - family and getting well.

Really hope Driftwood had some good news...

Have no time, but just to say hello to Driftwood. Really, really hope it's good news, but stick with us if not. If we can get through, well so can you x

Waves to all others. In a bit of rush, so can't post more, but I am up and working and feel almost normal.

waves back to smee !

driftwood...welcome so sorry you find yourself here.good luck for today let us know how you get on.

stars...i also have turned into a hermit mainly because lack of energy and feeling grotty ,at first i was like you didnt dare go anywhere on my own was also terrified i was going to lose my wig and needed the reasurance of having someone with me.as times gone on i have got more confident but still pick activities that dont take alot of energy like cinema,meals and i also got in the habit of taking my son out on a saturday morning for a fried breakfast as the others have said little steps is the way to go.

found out who upset me yesterday it was the senior radiotherapist apparently she does all the reviews which means im going to have to see her a couple of more times.but next time i will be ready to bite back.

a woman in the waiting room made me laugh,she whipped her top up to show me a inch of her scar was still open,she was put out that she still had to go ahead with 5 weeks of rads.

deecent..i avoid all statistics to scarey.

smee...glad your feeling ok.

Dee - rads planning only involves lying around having a scan and being marked up and the machine adjusted for you. The radiographers can then set the machine up exactly the same each time. Nothing to worry about.

How do I teach the cat that my leg is not a scratching post?

EEk at rads with an open wound

Pink - if you really do have to see that cow again, have some choice words at the ready.

hi driftwood so sorry to hear what you're going through. I can fully sympathise. I was seen at the unit on the 5th and I go back next Tues to get my diagnosis - whatever it is. Rabbit in the headlights is a very good way of putting it. Please let us know how you are getting on as I saw it was today you were going. Sending hugs your way . Whatever happens, there are people here who are thinking of you and wishing you well and will be here regardless for support x

dee good luck for tuesday. That's the day I'm going in so I will have you in my thoughts. She is quite right that you are not a statistic. They only show a trend. They do not show everyone's story and circumstances.

I agree stars that having a friend to go with you while you take little steps is a good idea, but the fact that you have realised you are showing hermit-like habits suggests you are ready for the challenge of overcoming those fears. good luck with it

Thank you all for your thoughts. Home now and have just phoned my mum with the update. It's been confirmed that I have "it". I know I am one of many but I am so very frightened, I want to catch a train to somewhere far away and not to have to deal with what lies ahead. I know I'll pull myself together but it is such a shock, I'm 48 and devastated to be told that Tamoxifen will send me into menopause. i like my body how it is, interesting to read people's experience of coming to terms, that's something I don't do very well so have a hard road ahead. Have been looking up Tamoxifen and don't fancy the side effects, really troubled by this as I am not ordinarily "an awkward customer" I go back next Thursday to meet the surgeon and have the "fit for surgery" checks. Have been told I'll have a wire inserted by the radiotherapist to guide the surgeon if he cannot feel it (I can't detect it). And the sentinel LN will be removed during surgery. The radiotherapy was touched upon, it will involve a month's treatment Mon-Fri, a four hour round trip by car, in the depths of winter (winter is my mood). I'll have to look for accommodation near the hospital. What do the poor do?

Driftwood, I am sorry, I really am.

At least now you know and, as you say, you will get to grips but it does take time. Allow yourself as much as you need. It's some comfort that it has been found early, and the treatment is very good (if long-winded and a bit hard on the system)

The long journey/need for accommodation is a major downer: something may come up in the meantime - there may be a passenger transport bus thing you could do? Not sure, but the BCN may be able to advise you. I may be wrong but this may well have come up before and a solution found (even if it is still a bind).

The tamoxifen thing - well, I was 46 at diagnosis and have been on it for nearly two years now. The oncologist and I can't see any difference so far and he doesn't think I am menopausal yet (I wasn't having periods anyway so that isn't an indicator for me). Try not to worry about that for now.

Ah Driftwood, I'm so, so sorry. Where you are now is by far the worst part of this sodding disease. Once you get on with the treatment, it's hard, but just something to get through. Not nice, or easy in lots of ways, but there is another side. I'm through and it's good. Life will go on and can do even through treatment. We're testimony to that.

This might reassure you, as I was 44 on diagnosis, now 45 and have been on Tamoxifen for 9 months. I've also had two mastectomies (most recent last week, elective). Chemotherapy shut down my periods, and Tamoxifen's done nothing to bring them back, but the side effects don't stop your life. Like everything with cancer it's an adjustment. Not fair, but it's a price for life, so maybe try and hold onto that. I know that's helped me.

With the travelling and all that, ask the hospital if they have a Macmillan advisor, or call Macmillan direct - they can help you find some funding/ support to solution am sure. They really are brilliant.

Stick with us. This place is honestly worth it's weight in gold x

driftwood - so sorry . You need a bit of time now to let it sink in .(although not sure it ever does as I still wake up thinking it was all a dream)
Are you UK based ? Not stalking , just want to know so I can suggest avenues for patient transport . Macmillan are great if you have access to them . They can help with transport , you can't be the only person in your area who has ever had this problem . Has the hospital suggested a way round it all ? Ask to be assigned a hosipital social worker , they can work it all out for you .

Again so sorry you are in this position , but feel free to ask ANY questions . No matter how mad they seem in your head , I can only assure you that one of us has thought it too .

Waves at smee and is in awe of her being up and working !

Driftwood, - I'm also really sorry that your DX has been confirmed. You will feel in a state of shock, and feel frightened - that's perfectly natural.

I'm glad your mum knows, - its always hard telling loved ones, and she will be able to support you.

Like you I was 48 when I was DX, and have been on tamoxifen for 2 years. I am menopausal, but it hasn't been too bad. Everyone is different and I know lots of people who have virtually no side effects from tamox. and others with only mild ones.

I agree with Cakes, definitely discuss with your BCN the problems over attending your appointments. There may be some sort of hospital accomodation or transport available to you, or a local cancer support centre that can help. Macmillan can also be pretty good with practical help.

Take a few days to get yourself back on an even keel, come on and chat if you think we can help. Its a bastard of an illness, and knocks you for six when you find out you have it, but your DX is the first step towards your recovery, and once you know your treatment plan, it does all start to feel a bit more manageable. xx

Driftwood, bummer. Have a

Treatment isn't fun, but it's doable for most of us. That journey's going to be a sod though, you're right. Hope some nifty solution appears....

Hi all. Just back from having portacath flushed (ow). and cake?

Thanks for all the common sense talk. I know deep down that I will come through this but I am so daunted by the process. My transport is not a problem thankfully, thanks for the signposts btw. I drive and I have a DH who will support me, it's the prospect of driving 2 hours each way during snow and ice, arriving at a unfamiliar county hospital, (we did a recci today on the way home but none the wiser) stress of finding a parking space etc that is an added burden. Reading this back I know I am wingeing, there must be others in the same situation where they have to travel miles and miles. I'm in the far reaches of North Devon and need to attend Exeter.

Driftwood, would a hug be in order?

I know it's a shock and seems like the end of the world and you've got the distance from the hospital to deal with too, but gradually you will be able to cope with it all, one chunk at a time.

It's a well-oiled medical system where people know what to do and how to give you the best outcome possible.

Think about what is going to help you personally, information, counselling, a RL buddy to unload onto, using the helplines, and make use of it all. You are not alone in this.

I've found (10 days after diagnosis) that the shock does lessen and you will kick into survival mode and do what you have to do, step by step. Just one chunk at a time. Use your emotional energy just one day at a time, don't try and take on the whole journey in your mind all at once.

And don't try to be superwoman - cut yourself some slack and identify stress points in your life that you can ditch while you're having treatment.

Let us know how things go xx and

driftwood. So sad to hear your news. Was worried about the tamoxifen myself but I decided in the end that I was pleased that my bc is hormone receptor +ve because it feels like I am doing something to counter it. Of course I'd rather not have bc at all... :( Travelling every day is going to be a * but I think I am going to do a lot of it on public transport and avoid the traffic.

xpost

Driftwood, I also heartily recommend wine, friends, family, laughs and treats aplenty. They are life affirming at a time when you really need that. Probably not necessarily today, obviously, or even tomorrow. Take a little bit of time to adjust and then give yourself permission to put yourself first for the next weeks and months. I bet you usually don't, like most of us, but - just for now - you really should.

I do know that my hospital gives free parking to radiotherapy patients...

i recommend chocolate. Lindt lindor truffle anyone?

ooh yes, absolutely, thanks. Medicinal. Should be on prescription (which would also make them free, of course )

Just want to share with you all that I had my 5 year mammo and consult with surgeon on Wednesday.It was finr-no evidence of disease :).I dont know if any of the rest of you are triple negative like me but if you are you will know what a huge milestone this is.
I celebrated with a cream tea[yum yum] today and my dd took us[dh and me] out for a meal last night.
I also signed off from the Breast Cancer Care website.for me it was just time to go.I will stay with bcpals which is more private and more personal and I'll check in here too.

Hooray for Pranma. yippee :)