23rd **TAMOXIFEN** thread

[MaryAnnSingleton]

oh my !

Oh poor you greylady, that all sounds horrible - wish I could come to look after you x Sod the unpacking.

Hugs to greylady hope you start to feel better soon but that is good news about your chest x-ray.

Any word on how Topsy got on, hope she is ok.

Good luck to mas, 14k mil and anyone else with appointments today.

Well onc phoned last night. Typical DH was outside with the children so I had to take the call. I find my onc very difficult to hear. He mumbles and nearly whispers and ums and ahs a lot. Anyway the jist of the call was seemingly the original CT was to show liver, lung, pelvis and not bones hence not showing up this abnormality. The MRI had not shown it up but when they re-ran it, it showed up (which I can't really understand surely why did it not show up the first time, or did they miss it?). He said that the only other thing they could do was bone biopsy which he doesn't want to do as it is too risky as it is too close to my aorta and he said although the recent CT said it was not consistent with haemangioma he said it might of been but he would re-do all the scans in 3-4 months and assume it is a benign anomaly. He hesitates so much when talking that I don't know what to think but I suppose I have to trust him.

Gracie, that does sound like cautiously good news then? Have you had a bone scan at all - that would have shown any problems surely. I think it sounds benign. Really annoying though to have that element of doubt lurking.

Greylady, forget the unpacking. All that can wait. Poor you feeling so low.

theNight, glad they're keeping an eye on you. Must be unnerving. Very hard not to lose trust in your body through all this cancer guff. I'm only just starting to trust mine again and I'm two years on now.

Waving to Lime. Is hard to keep up, isn't it. Doesn't matter though, just say hi when you can. How are you feeling anyway? Aches okay I hope?

smee No I haven't had a bone scan and haven't been offered one. I am seeing onc next Friday before chemo the following week and DH said he would be asking for more details. I think I just wanted him to say 'there is nothing to worry about' but it just seems to be 'oh we will keep an eye on it'.

Morning all

good luck to MAS (and hooray if you are signed off) and to l4k's MIL, for you appointments.

theNight - good that they are keeping a close eye on things, hopefully that is reassuring for you, although I know constant hospital appointments is stressful, so hope you are taking good care of yourself, and indulging in many treats

gracie - hopefully that is cautiously good news and has eased your anxiety a bit, - odd anomalies do show up on scans, I had a couple, but often they are harmless things you've had for years and never known about.

hello Lime - nice to see you, - don't worry about keeping up, just drop in (I lose track if I g out for the day and come back to lots of posts )
The allbran loaf is nice, - and you are right about the fruit, - my recipe said the equal quantities of AB, fruit, milk, sugar and flour. - But I thought that sounded far too much sugar and only added a couple of teaspoon - next time I'll leave it out altogether it doesn't need any. (I flung a few nuts in too)

Hope sometimes is having/ has had her op. - hopefully by this afternoon she'll be drinking hospital tea and munching hospital toast (am assuming you have to lie flat with a back op. so hope she has telly and ipod)

Ned - very frustrating not to be able to get out in the sun, - you need a big sunhat and something light but long sleeved.

Greylady, you poor thing, - take things slowly and gently, don't try to rush to get up, you'll only knock yourself back.

Smee, and jane - don't work too hard.

We've got sun today after it poured with rain yesterday.

I've hurt my neck - don't know what I've done but if I try to turn my head to the left, it's agony. So I'm taking co-codamol and resolutely looking forwards.

Someone from my art club phoned last night and told me that apparently I'm supposed to be doing something for an exhibition in a couple of weeks (something to do with the Jubilee) - first I've heard of it! - so need to do a picture quick - probably entitled 'Exploration of Colour and Form, Whilst Not Moving Head' .

love to all xx

Smee I'm still very up and down emotionally, horrible anxiety symptoms every morning, gradually lifting during the day. Feel v tired most of the time. Bones in feet still achy/cracking but haven't done anything about it. I never did get that bone scan and just yesterday queried it - rib pain pretty much went as soon as I had mentioned it, typically! So was in two minds whether to bother with it, but have decided I might as well (consultant had forgotten to arrange it!). How are you my lovely? Hope boobies are looking abit less Frankenstein? Are stitches/staples out now?

Am confused as to why Gracie hasn't had an actual bone scan if the anomaly is in a bone??

Gracie, seems really cruel to have that lurking over you. Maybe your DH with his forensic questioning can gain you some more reassurance. I do find it curious which tests they choose to give us. When I was diagnosed, I had bone and ct, but no mri. All seems v.random. I think Kurri's right, as all sorts can show on scans. I'd guess they'd be far more on it if they were concerned.

Kurri, ouch re neck. Keep moving it gently if you can - heat packs/ hot baths too? I am a bit prone to things like that and that's what works for me.

Lime, if it makes you feel any better, that all sounds familiar. I'm a bit better atm, but before op I honestly thought they'd cancel as they'd find blood anomalies. Then when they went ahead, I was convinced I'd wake to be told they'd found more cancer during op. And don't even get me started on the feet aches. G'ah.. fwiw, I reckon scan's a good idea. Bit terrifying, but I definitely felt a whole lot better after mine.

Since you asked, my breasts are funny. Still slightly lopsided, but a whole lot better looking than pre-op as I had capsular contraction, so looked like Quasimodo in reverse iyswim. I peeled final steristrips off this morning and the scars are quite something, but am sure will fade. Surgeon's asked me to consider if I want to go for nipples next. Am quite amused by it all somehow..

poor greylady - you're having a rough old time.
Sorry too that gracie is left with uncertainties - very unsatisfactory.
A hug too for lime
Am back- saw nice registrar and the head BCN who is lovely - got my discharge papers ! Still get access to the BCNs whenever needed and will be seen quickly if anything is worrying.
My B Gas homecare thing doesn't cover taps with ceramic washers -grrr- so am going to have to pay up- they're ringing me back soon.

WOW, MAS, that's quite something. I think you deserve treats.

MAS, tap thing's annoying, but definitely don't delay. Ours went a few weeks back and I had to turn the water off, as I couldn't turn the tap off at all.

Firstly - good luck to all those with apps today.

Topsy - hope you are feeling OK today.

Well just got back from appt with onc and feel like I'm constantly being messed about. Am now under care of local hospital after having surgery at a city hospital and was told chemo would be at the local hospital. Now just been told they are full so unless they can fit me in I will have to go to a different city hospital. Wouldn't be so bad if it was just for the chemo itself but apparently if I have problems with infection, etc will have to deal with the city one for that too. No start date, but will be 2-3 weeks. Haven't arranged scans yet, will do that today . Onc didn't want to discuss chance of recurrence or stats on benefits of chemo, said they can be shocking and more or less just wanted me to follow her recommendation.

Fed up and feeling a bit reckless. We were advised to cancel our holiday at beginning of June which I did, but now I'm thinking of booking somewhere before chemo starts. Although that might mean I'm not available when they want to do scan. Do you think I'm being irresponsible if I just think 'sod it' and let them work around me for a change?

Hi to everyone else and apologies for the rant.

1step, that sounds really bloody irritating to say the least. Have you been assigned a Nurse or anyone like that who can help you negotiate it all? Or I always found my GP brilliant, as he'd call the Consultants for me if I needed him to. fwiw, I had a few days away booked when I was diagnosed, and they were brilliant about working round it, in fact they encouraged me to go.

oh 1step -what a pain...I think a few days break would be a good thing to do also.
Am waiting for plumber to get back to me - I had a tap which wouldn't turn off once- was awful..am hoping it's just a washer and we won't need a new tap as this one was expensive and nice..

MAS, I am a bit of a closet expert on taps now, but most of those mixer taps have washers which you can't access. I think it's a conspiracy by tap manufacturers and plumbers, as it means if the washer goes you have to replace the whole tap, which is what happened to us. If your current one was an expensive one though, you might well be able to get a new washer for it. They quoted me £300 for one where you could replace the washer (was nice, but still!). I got one for £80, but the washer's embedded. My theory was our last one's lasted for 15 years..!

bugger !

That's very annoying 1step, - it's horrible to feel messed about, - and being sent all over the place, and to an unfamiliar hospital is not nice
I think in your position I'd probably go for the holiday - it'll probably make you feel more relaxed, talk to our BCN and she might be able to get the scan dates through quickly before you go away.

MAS - congrats. on being discharged

We had to have new taps recently because the washer was impossible to remove, - very annoying (although the new taps are nice). Hope you can get yours sorted out more easily.

have spoken to them and they agreed about some taps having embedded washers-tsk-anyway,they are coming tomorrow to look and quote -but hope it won't mean new tap.

MAS - that's great news about being discharged. Annoying about the tap though, hope you manage to get it sorted without costing a fortune.

Think I'll phone my BCN tomorrow and let her know I'm thinking of booking a long weekend away and see what she says. Have also realised there was no mention of getting a wig at today's appt, so will have to ask about that too. Does anyone know what the process is, or do you just have to go out and buy one and if so, where do you go? Are there specialist shops/hairdressers? Has anyone risked buying online?

Back from hospital with a brand new suspected skin condition - mastocystitis I think but they will be doing a biopsy in August. Not related to the cancer though so that's good and the biopsy wasn't urgent so presumably nothing sinister. I think I'm just going to forget about it until August.

MAS, being discharged must feel lovely, I'm really pleased for you :)

Gracie, I hope you're managing with all the uncertainty. It's does seem better news than before and hopefully it will turn out to be something benign. My sister had a bone scan (she has BC) and a couple of things showed up but they were all in the sites of previous trauma - falling off a bike and stuff like that.

Smee, I feel exactly that way about trusting my body. It's one of the reasons that I am doing my C25K running - it makes me feel a bit more normal again. Hot, red, sweaty kinda normal :)

Kk, I am continuing to milk it with my DP who runs round after me and provides lots of treats and nice things to cheer me up :) :) :)

MAS that's great that you're all signed off - well done! Definitely celebrate with fbs. Have put some of my mums amazing home cured salmon on the trolley. Also jelly babies and m&ms

Had nice lunch out with mum today - crab salad with garlic mayonnaise and chunky chips. Mmmmm. . .

kurri grr about your sore neck. Hope it doesn't impede your painting progress too much. I thought the title of your proposed masterpiece was very edgy and avant garde.

Spoke to Dr Lovely (my GP) and she said that me going back to work in September was not a good idea at all, especially since school are being so sh*t about accommodating me part time. Now thinking she might be right, and better to wait til after Christmas, so I can get properly better. Not sure how I feel about it. Might get very bored if feeling better and not working. Any thoughts? Would be 4 weeks after the end of rads.

greylady poor you. You really have been through the mill. Hope these antibx sort you out once and for all. Good to hear chest X-ray clear - that must help reassure you.

gracie sounds like could be good news, then? Boo for the uncertainty though - that is a bit of a nightmare. Hope you're doing OK.

lime good to see you! Don't worry about keeping up. Just pop in and say hello!

gig how you doing tis evening?

Any news on topsy? Or sometimes ? Did I miss it?

Waves to smee hope you're doing OK. Hopefully lopsided boobs will settle with time?! Am imagining you in a closet being a tap expert. . .

Waves to onestep, jchoc night and anyone else I've missed. Big hugs all rouund x x x

the work thing is tricky ned but I guess be guided by your Dr Lovely...am sure you will find activities and stuff to prevent boredom.
No exciting fbs here alas, but maybe a glass of wine.

Ned - I think I'd follow your doctor's advice seeing as work aren't being very accommodating regarding part time hours. At least it will give you some time to recuperate and I'm sure you'll be able to keep yourself busy preparing for Christmas. You'll deserve a few weeks to yourself after all you've been through.

Kurri - hope your neck is getting better and you're getting some movement back. It's not good when you have to try and keep your head still. Good luck with your painting, have you got any idea of what you're going to do yet?

oh yes, good luck with your art project kk and hope neck soon feels better.

When I was asked whether I had any probs with tamoxifen,I said I supposed not as I feel if I say aching bones and whatnot it'll just be dismissed - am pretty convinced it's arthritis too. Also I can never think of questions in appointments.Can always ask BCN still,so that's ok. My left breast (the surgeried one) still aches too but stupidly didn't say anything.

Waves to all- am reading and taking it all in but tired.

Yay re mas, gracie am glad you got an answer although sorry it wasn't as unequivocal as you would like, 1ststep sounds like we might be chemo buddies. ned more time off sounds a good idea.

kurri I have stiff neck too- its very annoying.

Back to Lewis and early night for me- it's all rock and roll chez gig.

Gig - chemo buddies sounds like a plan! Enjoy Lewis. I'm signing off for the night too.

MAS - calling your BCN sounds like a good idea as it's often easier to talk over the phone.

Goodnight all xx

Just popped in to say thannks for all good wishes. I feel a bit better today. You know it will soon be the Silver Jubilee of Tamox Thread! Is this the longest ever mn topic?. I know I it is one of the most supportive-a real haven for all of us.