Tamoxigang thread 50 with summer sun, sangria and maybe even some sand

[foofooyeah]

Welcome to thread 50 .... Yes FIFTY.
Lots of us are rising 50 so rather apt!

Thanks RahRah. I'm not sure what regime she is on - have to find out and get back to you. All support and advice is great just now - thanks all.

janbk I have found knittingnovice's blog but it is not easy reading, there are some posts from her husband after she passed away. She talks about her treatment but also about her life in general. I'm happy to link to it (she has shared it here before so I don't think it should be a privacy issue) but only if you feel that it would be helpful to you.

mrsrhod yes, I have a colorectal nurse :) she is more to do with the surgery than the cancer, but she is part of the MDT so I can ask her about both things

Sorry malt I didn't realise some patients didn't have access to a dedicated nurse. We have two at our small local hospital and they're both lovely. One in particular who is the only person I've seen who is older than me and I find that ridiculously comforting. I can call her anytime, I will appreciate her even more now.

mrs re the dcis, if it's localised they will do something like a lumpectomy (though there isn't a lump as such) but last year mine was scattered throughout the breast so mx was the only option. This time I think it is more localised but surgeon has recommended a mx as my breast is 'unstable'. I think the rest of me is as well at the moment! I'm happy with having a 2nd mx.

malt it is rubbish that your service doesn't have BCNS and quite inequitable. I had a survey to complete after my last episode of treatment and sang the praises of my BCN, hoping that will go a little way to ensuring that the service is retained in these days of NHS cutbacks.

jan sorry to hear about your sister. I have no useful knowledge to impart I'm afraid but all good wishes your way.

foo hope work is going ok

My treatment was at 2 different hospitals ( one did surgery and the other chemo and rads ) There were some BCNs at the 1st and sometimes they sat in on appointments but never saw the same one twice and there was no relationship as a lot of you seem to have with yours. None at all at the second hospital. It would have been nice to feel that someone was overseeing everything as you get passed from department to department. I did comment on this in my feedback form

Hi all
Just a quickie from my phone on my hospital bed, to say thanks for the good wishes. All went fine, and apparently the nodes they biked over to the NHS pathology dept mid op were clear. Am a bit sore and getting used to being flat one side, but at least it is OUT.
Hoping to be home tomorrow.
Hugs to all who have had news that's pants this week, or are still waiting....such a rollercoaster...
Best wishes

Great news angels! And very quick results. I'll be where you are in a couple of weeks

Brilliant news angel, can't believe you got your node results so quickly. At least you won't have the agonising wait. Best wishes for a smooth recovery.

That's great my angels, I had heard that some places were able to test mid op now. Hope you make a speedy recovery

Jan, I'm so sorry to hear about your sister. I have found my anxieties about my children to be the hardest part of being ill. Being honest at every point has been important, but that isn't the same as needing to tell them every detail - there's a lot of distressing stuff they just don't need to know. I read recently that children need the honesty, but they also need hope, eg an emphasis on any treatments still available if that is possible. Schools can be brilliant, either as a place to be normal or a place of support. Either way, let the teachers know as they can then be sympathetic to any wayward behaviour. My children haven't wanted to talk to the school's counsellor or to anybody formally. Far more effective has been the odd kind word from the chaplain, who finds a way of privately but informally chatting to them (he keeps in touch with me by email as well).

Hi all
This morning felt agonisingly long but my gynae appt finally came round and the good news is that the team don't think my ovarian cyst is worrying. Size needs to be kept and eye on so I'm going back for an ultrasound scan in 4 months and can also discuss possible hysterectomy and removal of other bits then but he was saying not to rush into that.

There is some debate between the breast team and the gynae team as to whether I should have the mirena still in or not. The consensus seems to be yes if I stay on tamoxifen and no if not. I'm off it at the moment pre-surgery but not sure what the longer term plan is.so.need to clarify that

He also said that my dcis was both er and pr positive which was news to me as I had only ever been told er. It was er 6 I think and he seemed to be saying that it was only slightly pr sensitive.

So I've got a few questions for my BCN but overall I'm very pleased. Just the mx, sentinal node biopsy and results to get through now.

It's a beautiful day here. I'm going to sit in the garden with dh and a cup.of tea

Hi marshy what good news about your cyst, one less thing to worry about just now.

Picking up on what you said about your mirena. I had these conversations with my gp, bcn and oncologist in August. The gp said she often ends up in the middle of a scrap between breast and gynae teams who have different viewpoints, but in my case all were in agreement that it must come out. Sorry, i have no gynae issues, all bc team in agreement. In fact I went onto the manufacturers website, Bayer I think and it says on there that it is not suitable for women with breast cancer. That was good enough for me so it came out. I am also on tamoxifen. I had a little cramping for a few days after it came out and a light bleed about a week later. I'm waiting to see if I get more bleeding or if the tamoxifen holds it off.

I'm continually amazed that there can still be confusion and mixed views on such crucial factors.

Hi marshy just wanted to say that I am pleased you are as happy as you can be with current status. To answer your previous question, I didn't have any further node exam/clearance for my DCIS breast as they were happy it was self contained. That said, they could have had a good old poke around whilst I was on GA.
Also glad to hear op went well myangels enjoy the drains!

Angels, well done on getting through your surgery and with such good news about your nodes! All best wishes for a speedy recovery.

Marshy, good news too about the cyst, hope you have a great weekend relaxing without this hanging over you.

I went back to the office today, having been off for 9 weeks with diagnosis, tests and surgery and then our long holiday. Thought I should show my face and catch up on the gossip and it was actually very nice. My colleagues are lovely and supportive, no one said anything awful or did any head tilting which I was grateful for, and I had a good long lunch with my line manager. She is keen for me to take as much time as I need and not think about work whatsoever during the chemo unless I really feel like it She is also very supportive of home working which is great as the London commute is not that tempting even when in full health! I get 13 weeks sick leave on full pay and 13 weeks on half pay, so money isn't a big worry for us (so extremely grateful for this). I will work a few days next week but then the following week I should be starting chemo fingers crossed.

My surgeon seemed to think I would be getting FEC-T and I wondered if anyone could share their experiences of this? I understand it's a pretty hardcore option but warranted given my situation.

Hope everyone else is doing well x

I'm glad you've had some good news marshy :) I was told that I should get the mirena removed ASAP when I was diagnosed, before they found out what type of BC it was or anything. It is strange how the advice differs

Elporto glad it went ok at work. I had fec t as did many of us on here. I was lucky and wasn't sick at all, though did feel out of sorts. I got on better with the fec than the tax though that might have been the cumulative effect as I got towards the end too. They say that if you get travel sick or had morning sickness you're more likely to suffer with sickness but there are lots of drugs they can give you to help. I'd stock up on gingery things, biscuits and ginger beer etc, mints to suck are good as you can get a funny taste in your mouth. After the first cycle you'll know much better what to expect and it gets easier. The week before your next chemo is when you will feel best so it's good to do some nice things in that week, coffee with friends etc. it's horrid waiting to start but you'll be fine we'll help you through and give whatever advice we can :)

Thanks for the good wishes all.
Am home now, which is good, but OMG - the drain! I hate it with a passion. I cannot bear carrying it around, awful, awful, awful. I'm going back in the morning to have it out, hopefully. If so, I shall do a dance around the hospital.
Xx

Thanks malt, that is good news that you coped well with it. I didn't get morning sickness, nor do I get travel sick so hopefully this is a good sign and I already mainline ginger beer like it's going out of fashion so any excuse to continue! How are you doing? Rads are over for you now is that right?

Thanks for good wishes all.
Buns I'm kicking myself that I didn't press to get rid of this breast last year. Would be hanging onto all my nodes now and not have the agony of waiting for results again. But I'm on the square I'm on so that's that!

Mrs It is all a bit perplexing re the differing views on the mirena. I'm going to have to do a bit more digging on that one.

elporto it certainly is helpful when work is understanding. My boss was great last year and again now. Good that your plan is coming together

Ooh angels, yes the horror of the drain! I had mine for a week, I was soooooo cross about it, lugging it around in a tote bag with cries of 'mummy, why are you carrying that bag around?' constantly ringing in my ears. Grrrr, it gave me the rage. Having it removed is gross but quick and then you'll feel like a new woman!

Looking forward to the drains not

Yes finished rads back in march and was back at work the next week. Just on tamoxifen now. Feeling fine, hair is growing but still living with the fear every day which is why I'm still posting on here I suppose

Sorry malt for not remembering, it must feel good to be 'just' on tamoxifen but I can see how the fear remains. It struck me just this week that cancer is going to hover for longer than I could ever imagine

Hi guys
Feeling a bit down today after all the ups and downs of this week. Just had a great big cry on my own in the kitchen. No one else in the house at the moment. I think it's just the disappointment at having to go through things again.

It's been good being home this week as I've been able to help dd get her uni placement to Morocco sorted out. She was panicking about it and gave me a big hug and said thanks for helping, which choked me up tbh. She's off a week on monday and not back til just before Christmas. I'm going to miss her so much.

I have my pre op appt this Monday so will be off work that day and have managed to swing having next Friday off as well mainly to spend some time with dd but I'll be at work the rest of the time and the week after, which is the one before my op, unless I go off sick. Don't really want to do that as I've used lots of my paid sick leave for this 12 months on my last mx so have to be a bit careful this time.

God I'm pathetic! Just feeling a bit sorry for myself this morning but I know it could be a lot worse.

Wishing you all a good day xx

Hey there, Marshy. Just wanted to send a big hug to you as it all sounds a bit much at the moment. How great for your daughter, but I can imagine how much you will miss her. What is she studying that gets her to Morocco? Have a and some .
You're not in the slightest bit pathetic.

Thanks Wren. I've just cleaned the kitchen floor which always makes me feel better and am sitting down with a cup of tea and the radio. Ate all the cake yesterday.

Dd is studying anthropology and will be volunteering with orphans and homeless people in Marrakesh. I'm really proud of her and I know she'll have a great experience but there is a tiny bit of me that wishes she had used her maths A level to study accountancy or something which would give her half a chance of getting a job, being safe and meeting nice young men in suits!

Feeling a bit more together now. I've arranged to see my BCN next week so can hopefully get some of my worries into perspective and remind myself re some of the practicalities of the op.