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

[MaryAnnSingleton]

just in case we run out of space !

hi LGF,
Just thought I'd introduce myslef properly as was in a rush last time.
I was diagnosed December 2009. They said for quite a while my tumour was grade 2 or 3 but after about 6 weeks it turned out to be a 1, which was good. However it had spread to the nodes so I had inital lumpectomy, then node clearance, chemo and rads. This finally was completed by early September 2010. So it is a long effort, but I've got through and so will you.

I know the early stages after diagnosis are horrible and all scenarios go through your head. I was reeling for about 3 weeks but then decided I simply couldn't carry on reeling, and that somehow I would get through. I learned to take one step at a time and only deal with firm facts, as they emerged, rtaher than speculating on every worst scenario. The truth is that you get facts little by little as the tests and ops progress, so I didn't know (for example) until April that I didn't have any more lymph nodes affected. I'd been waiting to hear about that for 4 months by then! (There were delays for various reasons including snow and infection!)

So we all understand how hard it is in the early days and will try to help. Honestly, it does get better once you've got onto your treatment track, even though bits of that can be tough at times.

Re sleeping, have you tried giving up all caffeine? I did for several weeks, just to sleep. I still woke up early (ie about 6) and then I just got up and did stuff - anything- rather than lie there worrying. I did a lot of distraction-activity, but it helped me.

Try not to think the worst and just ask anything you need to.

Hugs xx

PS - waling also helped me - I walked almost every day as it calmed me and boosted my morale. Even if its only 20-30 minutes.

And think about your 'team'. Who amongst your family and friends will be able to help. I found telling people one of the worst things - buit once you've told them, you'll get offers of help which you'll need - to help with children, go for a walk with you, pick you up from hospital, visit you etc. people round me were wonderful, even some I didn't know very well. Someimtes its had to know what to say when people offer to help, but over the months I found it really helpful to be able to ask for lifts, or just for someone to have coffee with.

Good luck. Have you got important appointments this week?

Sorry - that's walking, not wailing. Though wailing helped too at times.

Hi Sandripples, thanks for your post.

All this grade 1, 2 etc thing doesn't mean much to me at the moment. I haven't been told that. I know its the hormone related BC and that it has been there for 'months' (which makes me feel sick - why didn't I notice it?)It has gone to at least one lymph node. I know no more than that! The consultants speak positivly. My oncolgists has been asking about family history etc, so he can work out how to stop it coming back. Thats very positive to me.

I have an MRI scan on Wednesday which the Oncolgist didn't think was important but the original consultant (who will perform the surgery) does. This scares me but I have to do it. I also start chemo on Thursday, which doesn't scare me as much as I want something to happen. Losing my hair does, but hey ho. I also have an appointment for a wig fitting tomorrow. That might be a laugh

I have lots of support..partner, parents. MIL, and lots of lovely friends (although when things like this happen its the people you least expect, that do the most). I also think that some people don't know what to do, or what to say. Thats fine.

Giving up caffine might be hard but will certainly try and cut down and see if it helps. Walking sounds like a plan. Thanks for that idea :) I have just given up my gym membership so will need to do something.

Thanks for all your kind thoughts for tomorrow. I'm as ready as I'll ever be.

Tonight I had to fill out a health and well-being questionnaire to do with the trial I'm on. It was difficult to do because I'm rubbish at answering multiple choice questionnaires but there will be more in the coming weeks and I think they want to compare how I'm feeling now and how I'm doing along the line. I also had to write a letter to son's college (he's 20 and has downs syndrome) explaining about the diagnosis and to expect him to maybe want to chat about any worries and fears he may have. But I've emphasised that they must be positive and upbeat.

LGF, I don't have very much info at the moment either except it's either grade 2 or 3 and it's in a lymph node. It's a lobular type of cancer - several small tumours which is why they want to shrink them with chemo before they operate. Like you, I've got a lot of support from my family and friends and have had lots of offers of help with shopping and housework. I also found that some people really don't know what to say.

For a few years now I've drunk decaff coffee and really like the taste. I also buy caffeine free coke. I'm not sleeping too badly at the moment and I think a daily walk really helps.

I've been drinking lots of water today to help with the chemo tomorrow. I'm just worried I'll need a wee half-way through. :)

You're ahead of me with the wig appointment. I will find out the details from the clinic tomorrow and make the phone call in the afternoon to get a fitting but will probably need to get my hair cut short first as it's really really thick. Also, to find out about the people at the hospital who supply lovely scarves and hats.

Figgy - you can go for a wee during chemo if you need to - you just wheel your drip into the loo with you (I speak as a small bladdered person )

Hi,

I don't much about grades either, but grade 1 is the least aggressive, which is why it was good news for me.

I'm glad you have a good team around you.

I don't think I had an MRI. I had a bone scan and 'whole body' scan (although not my head) and these were both worrying for me at the time but in fact were straightforward and did not show any further spread. It is a little alarming when a machine comes so close to you - I just kept my eyes shut and focussed on pleasant seascapes in my mind, and it was fine.

Good luck this week then. I'm back at work so don't tend to post much during the week, but I try to keep up! This thread is a great support and the lovely ladies have become friends so I miss the chat if I don't at least check for a quick scan through.

That's really reassuring to know KK. Thanks. :) Actually I'm a huge-bladdered person - I always joke I have a bladder the size of a whale because I can go ages before I feel the urge but I don't normally drink as much water as I have been.

Remember that if you have epirubicin your wee goes red straight away!!Dont be alarmed :)

where does the time go?? my baby is three at some unspecified point between tomorrow and tuesday .... that'll baffle some of you

happy birthday to little RWU !!

Happy birthday little RWU - which day is she going to have her birthday on - has she decided yet?

As a true little 'taffy' we're going for St Davids day on Tuesday!

Just wanted to pop in to say a big Good Luck to Figgy for tomorrow, I will be thinking about you. You sound very well sorted

I have a meeting with the chemo nurses tomorrow, to be shown round the unit etc. Not sure what else.

Love to all xx

Ps, sorry to be pedantic... Tis not her birthday... It's her 'being 3 day'

Ooh and Happy Birthday to your DD RWU!

Hope it goes ok LJ, don't forget to ask any questions even the ones!
Good luck to figgy too.

Err, now you have me intrigued RWU - what are the questions?! I tend to only think of good questions once I'm back in my kitchen having a cuppa!

Well let's put it this way, dh kept at least 6 foot away from me for months until we asked what ahem precautions we need to use! He thought his manhood might shrivel from the chemicals

Haha Sounds like useful information, to be used with discretion

! March 1st is dh's birthday so that's an excellent choice - he'll be having a being 46 day

Lots of luck today figgy and hope the tour of the chemo unit is reassuring LJ

Happy being three day to little RWU!

Good luck to all visiting chemo units/getting treatment.

SR's quite right, I have had quite a lot of alcohol related support but the need for that has passed, at least for the time being. We are on a health kick here and, as part of that, and with MAS's example in mind, I am going on a relaxation/hypnotherapy programme as of tomorrow. I have NO idea what's entailed, but i saw a notice at our local pool yesterday, and I really fancy it. DH wants to go too, but says we can't go together as we'll just end up giggling so we have to toss a coin for who goes, but it is going to be ME.

Figgy, I think it's a great idea to warn your ds's college. My dd )admittedly much younger) talked to her teachers quite a bit and it was useful that they had had time to prepare their faces and their approach. x

KK - all that gardening. How industrious. And sunshine???? You had SUNSHINE??????

Thinking of Figgy today. Though you'll be one down by the time you're reading this Figgy, so already a little bit closer to the end. Keep gargling to ward off mouth ulcers - they can sneak up on you. Let us know how you're feeling when you can.

LGF, I drank on and off through treatment. Mostly didn't feel like it, but sometimes it was essential. On every day of note - so results for anything, etc - we had a bottle of champagne to yell up yours to Cancer. When Summer hit, DH got into buying me fruit beer to cheer me up. Had never had one before, but mmm.

Limejelly, hope your tour involves sane nurses and biscuits. Have you got your start date too?? There's three of you now.

Happy 3-day to little RWU - whenever it is. And just how many horses?? You need more handbags to go with them. On a ratio basis I think you're 3:7, which is surely a bit lopsided.

Cakes are you sure you can avoid giggling even if alone?? Good thought for March though - something new. Following your lead, I've decided not to drink in the week. I am going out to the pub tonight, but it's still February.

KK's shaming us with her cultivating. I did look at the gardening bits in the weekend papers yesterday. There's a rather cute gardener in the Guardian but he's gone and grown a beard, which sadly doesn't suit him. Obviously I am a long way away from my own vegetable plot.

Where's Spring then?? I was sure it had arrived last week.

Hi everyone, gosh I have had to read for ages to catch up with you all and your news.

LGF I am so sorry that you are facing this, I see everyone has given you useful advice, I hope it helped. I can help at bit with your MRI question. A CT scan is a contrast scan, basically you know what an xray looks like, a ct provides a bit more info than that, and more 3D. An mri doesn't use xrays at all but uses a magnet to realign bits of the cells in your body, and then uses a computer programme to interpret the data into complete 3D images of soft tissue, bone everything really. To all intents and purposes you get the ability to see any cross section of the body from any angle. For a breast MRI I would expect you to be in the scanner up to your waist probably. You will be given headphones to wear, which will play music through to you, you can take your own cd usually, if there is something you find particularly restful. Best strategy is to close your eyes, there is normally a mirror angled inised the scanner with you, so you can see out easily, but eye closng in good, listening to the music and concentrating on your breathing. It will be noisy with lots of banging and knocking sounds, this is the magnet working and completely normal, try and ignore it or consdier it a really loud percussion section in your music I would have thought for a breast scan you will be in there no more than 15 mins. They will give you a panic button to hold in your hand too, so if your do feel too panicky you can press that and they will come straight in to get you. It will be fine though. I am claustrophobic but I have had whole body scans, heart scans and a series of brain scans (they needed to check if I still had one ) and if I can do it anyone can. Also I have two very dear friends who helped fine tune the computer programmes for MRI's. One of them is still a senior MRI researcher and developer, lecturing in MRI stuff (you can tell I listen to exctly what he does these days can't you!) he has imaged his head more times than either he, his dw or I can count and he is fine!

RWU I am so for your horse purchases, you and I must have a chat about pony's for me and my dd1 sometime, I think you have pearls of wisdom to share.

For those small bladder suffers here, I had a really vivid wee dream last night!!!!

Cakes- the hypnotherapist will talk in a weird voice,which is quite giggle-making !! I had about 5 sessions of hypnotherapy a few years ago - it was quite relaxing,but I couldn't really apply it to helping with ocd -though it was very calming. You'll be aware of everything that happens so it's not scary
Am off to see to dad's laundry - I wonder where he hides all his knickers and socks as I only seem to be doing mum's things and bedding and towels ! He does put the same shirt in though-he just picks the nearest one to hand !
Seeing mum later- was brave and rang my aunt to update her-she'd left a plaintive message yesterday.