TAMOXIFEN -the third thread ***

[MaryAnnSingleton]

here we are- will put a link on the old thread.

So she's a long way away as well. oh dear. I have never heard of the op (not that that means much), maybe post something a bit more general with Crohn's in the title, it may dredge up more people with experience? It sounds awful and am a bit on her behalf about the lack of info and support from the hospital, not knowing is usually one of the hardest things.

fingers crossed for her KK

Good plan Cakes - I will do that this evening when its a bit busier on health. I too am very its all been badly mismanaged by the hosp. - I mean its awful enough to go through anyway, but not to have any support or info. is dreadful, she wants to know all the day to day practicalities. So I'm trying to find sources of info. for her. I will fly up when she wants me to and see what I can do. Luckily her DH works at home so is on hand.

Sorry - I have hijacked and gone way off topic. I will stop waffling on because I am just venting really.

Kurri your poor poor sister. That sounds really scary. Puts things in perspective a bit, so I for one are glad you've gone a bit off topic. Hope she starts getting some clarity soon.

KK, I agree the hospital should have provided better support. It makes you realise that we are lucky to have BCNs. (My friend with nonhodgkins lymphoma was also sent hone with this diagnosis and no-one to speak to for over a week)

The other friend I have with Crohns is busy dealing with some heavy-duty treatment (brand new apparantly and specifically approved by NICE due to the severity of her condition) so might not be able to get back to me till the w/e. I have the impression (having known her for several years) that this is a really complex disease - it can affect individuals in a lot of different ways and in different parts of the gut. Certainly she has to have reviews, and changes of medication and all sorts. She does have a specilaist that she really trusts though, so I hope your sister can find the same, even if this is not the case as yet.

I will try to give more info when I can. Meanwhile I am so sorry you and your sister are having a miserable time. I know ther is a forum for people with Crohns that my friend has found v supportive.

MAS - good news about the CBT!

Thank you SR, I think its really important to be able to talk over concerns etc. when life throws these various health curve-balls at us. Sometimes there isn't time or opportunity to talk to consultants at length. BCN's are a Godsend indeed.

Thank you for your kind words Smee, I hope your meeting with your BCN went well today, and you were able to talk things through. There are ups and downs along the road - just a question of taking things as they come at times, esp. in the early days. (Easier said than done sometimes I know ).

agree that BCNs are gems and we are lucky to have them. Mine has treated me as a whole person not just someone having treatment for bc and through her I am getting to grips with lots of psychological stuff that has hampered me for so long.
We're off visiting MIL shortly so might not be about to check in but shall be thinking of you all a lot.Take great care

Thanks Kurri - it was a strange meet as she got out lots of prosthetics and implants for us to look at. seemed very distant from me iyswim. Meeting the Surgeon tomorrow to discuss it all again - there seem to be pros and cons to everything, so it's all a bit confusing tbh. Not a massive deal for me for now in some ways, as the immediacy of having cancer is what bites, so the cosmetics seems a bit trivial for now. I know it gets you later, but it's hard to think further than full results. One step at a time though.. MAS's so right about BCN's though - big shame your sister hasn't got access to something similar. Mine's been astounding so far.

It is confusing Smee - its all a bit of an information overload at first. I felt similarly to you - getting well was the priority - other things could be dealt with in the longer term.

Hope your consultation goes well tomorrow

You've probably left MAS (in which case I'm talking to myself) but if not have a lovely visit with MIL.

not quite yet KK - but thanks

oh and yes,good luck tomorrow with surgeon Smee - hope it is helpful.

Good news about the counselling MAS. Really pleased for you about that.

KK sorry to hear about your poor sister. I hope she gets some helpful info soon.

Smee - I remember that rather surreal meeting withthe BCN. you're so right about focusing on the cancer rather than the impact on our underwear choices. Good luck with thesurgeon tomorrow.

I'm writing on my phone back in hospital with neutropenic sepsis again. . Don't know what's caused it. I've had a cold but I thought I was coming out of that. This is also despite daily GCSF jabs. Will be here for a couple of nights at least. Quite unbelievably pissed off.

Thank you Pennies - I've had some very helpful replies on a thread I started in here, and now have some info. to pass on to her.

So sorry to hear you are stuck in hospital again - you are having a rotten time of it I hope you're feeling better and back home very soon. xx

hello,thank you will phone a nd speak to a b.c nurse after solicters tomorrow,what a fun day..Went to williows today,excellent time but now also bleeding heavy..wtf is that about?So sorry about your sister,hope she gets support from anyway she can...
Pennies pls rest and rest some more,sending u all big hugs,and many thanks..Hands so bad cant type anymore xxx

am not going until tomorrow but was worried I wouldn't get on here much - ebbie,lots of good wishes to you today and Pennies- that's a total bugger again- you poor love.
Thanks though about CBT thing,feel as though I'm getting somewhere !

Hi to all - haven't been on for a few days and there have been so many posts!
Smee - hello and welcome. The initial few weeks really are the worst. Look after yourself and get as much support as possible. This forum is great for support and just hearing how others cope. Ebbie - you too must be feeling overwhelmed. I won't go into my story here as I think my post is going to be too long anyway but I would just say that I am the worlds biggest coward. I used to hate even going to visit someone in hospital. Having said that I have managed all of the treatments. It is do-able!!

BB - glad to hear that you have one chemo under your belt. Well done!

Pennies - you poor thing, Infections are such a pain and just delay everything. GCSF didn't stop me from getting infections either. So sorry to hear you are back in hospital.

MAS - good news re the CBT

SR - I had a sore arm with the epirubicin too but it is OK now. One of the veins apears to have sunk a bit but it isn't sore. As for the auxillary clearance I found it OK - less traumatic than the lumpectomy actually and it healed really quickly. I didn't even feel them taking the drain out!

KK - sorry to hear about your sister - hope she is feeling a bit better.

RWU - how are you? I have visions of you bouncing up and down on a trampoline

Sorry about the long post - hello to everyone I haven't mentioned and hope the treatments are going well.

I'm off to the greenhouse now - my chill out zone. Trying not to get frustrated by the lack of energy. BTW - did anyone get horrible hot flushes after chemo? I think it has tipped me into an early menopause. I get so hot (especially during the night) that you could fry an egg on my baldy head.

KK. I have now had a repy from my good friend with 13 years experience of pretty sever Crohns. (She is only 29 poor love)

Anyway she says the best website is www.nacc.org.uk You've prob already found it, but she says is well worth joining for £10 a year and it signposts you to other useful resources.

She also says its vital to spend time researching to find the best hospital with a Crohns specialist. She says without a specialist treatment can be erratic.She knows Salford Hope, Liverpool Royal and Addenbrooks Cambridge are excellent but I think your DS is in Scotland? If you want I would tell her the location as she has a network of friends she could ask to see if they have recommendations. (I realise you might not want to do this so no prob if so)

Personally I think its quite difficult to research hoaspitals when you've just had a devastating diagnosis, but especially with a long term condition, I think its vital to find a centre of excellence. The trouble is that when you're new to the condition you don't even know what would feature in an excellent place. (I certainly didn't know where to start with my BC although I think my Drs are fine even though its not as well known as somewhere like christies.) Then there's the factor of distance too, especially in some parts of Scotland where specialist centres have to serve really large geographical areas.

Hope this is a bit of help. If you have other specific questions I wd ask my friend for you, although once your sister joins that forum they offer support to families too. Good luck. My friend says it is (despite her recent bad experience) not the end of a happy life - you learn to live with it.

Sorry am in a bit of a rush but waving to everyone else. Pennies, I'm so sorry you're in hopsital with another infection - it must be grim. Hope you can relax and not worry, just get better. Sending hugs.

Hi everyone, thank you so much for th info SR, I will direct my sis. to that website and have a good read through myself. I imagine nearest specialist centres would be Edinburgh or Glasgow. (she is not very near either but they are reachable). Do thank your friend very much for her kind offer, I'm sorry she has this horrible condition but it is encouraging to hear she is getting on with her life.

The offer is a very, very kind one - much appreciated, but I'd better not say her exact area, (I would happily if it were for me, but will need to talk to her about what she would like, when she's a bit stronger.)
Hope you are feeling stronger today, I'm guessing chemo will stop for a little while while you recover from your op? Very good luck for next week in case I miss you over the weekend (taking DD back to uni.)

Lovely to see you Haggis, I did get very hot and bothered on chemo, but more so I think with the tamoxifen. I am having a lot of hot flushes at the moment - they are horrid aren't they. I use an electric fan on a table near the bed at night which helps a little bit. (Although I tend to go from very hot, to cold quite quickly so its a bit of a juggling act to regulate temp.) I know you can get a kind of cooling pillow, called a chillow - I don't know what they're like - someone else may have experience.

I too potter in my greenhouse to keep myself sane - hope you enjoyed your morning in yours

Hope you are feeling a bit better today Pennies, and not too frustrated. I know its miserable at the moment, but remember you are getting through it - each one is another scored off the list. take care xx

Love to everyone - you have all been so kind and reassuring about my current worries - what would I do without you?

Kurri, glad to hear you're getting more advice. Knowledge is mostly helpful I think - am sure you're doing the right thing by finding out all you can do to be there for her.

Pennies, so sorry to hear you're stuck in hospital - fingers crossed they'll let you out soon. I'll be thinking of you.

I met my Surgeon this morning, who I've decided is utterly fab. Think fiercely bright, but a kind smile, steady hands and a warmly dry wit. All in all I couldn't ask for better. So am all set for mastectomy and node clearance on the 22nd. Actually feel better now I know when. Also she confirmed I am Oestrogen and Progesterone positive; so Tamoxifen for me too. Seems to be quite a good thing as it might stop recurrence - or am I wrong about that?!

Happy weekend to one and all then. Hope the sun continues to shine. And thanks again for all your kind wishes. You've more than helped keep my sanity this week.. x

Smee - so pleased your meeting went well, and that your surgeon is so nice - it makes a world of difference when you are confident with the people who are going to look after you.

I think tamoxifen is good news - its another weapon in your armoury so to speak. Have a lovely weekend - you've had a hard week, time to relax a little bit now

kurri, you're so right - my lovely other half has a bottle chilling as we speak.
Hope you can have some fun too - though am sure your sister is more than playing on your mind.

KK - thanks for the tip re the chillow - I'm off to google it now. It sounds much better than having a big cat curl around your head - with no hair my cat has taken to trying to sit on my head so that he can get the heat.
Got some tablets from the GP today which may help.....

I'm still here - so glad things went well with surgeon Smee- I think that knowledge gives you a feeling of being more in control. And yes, good that you are er + and can have tamoxifen.
I have practically no side effects from it - no particular hotness -so not sure if that's good neccessarily.The only sign of taking something is lack of periods,or pathetic ones.
I was wondering whether there is any connection with sickness in pregnancy, of which I had absolutely none - maybe I'm just horribly insensitive.
Take care everyone, hope you are ok Pennies - see you all soon x

Sorry Haggis but LOL at the mental image of the cat sitting on your head!!!