Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

Difficultpickle, I know how it feels to have no choice but it's horrendously scary to be faced with that statistic.
It may be for 5.5 weeks, but you're not going to be alone. Check the internet connection n I'll be there virtually to support you. When did you say you're going in?

No new posts since lunchtime? Or has my Internet stalled?

Seems to be working.

Goodness, good you've got a date and your two surgeons fixed up. I hope the set plan will help you let go for the next few days. The relentless mental turmoil of making plans/ decisions/ appointments is exhausting and there is some relief on a plan of action however daunting.

It is quiet isn't it !
I had my rads planning, was ok but don't start till 10th February which seems ages away
Hope everyone's having a good evening, sorry not to reply individually to everyone I'm knackered

Hi Malt - glad your Rads planning when well - shame about the wait though. Do you think you'll still be OK to go back to work after Easter?

Good to hear from you Wren - how is your wound doing now?

Glad you have made your decision Goodness - am sure you will start to feel more settled now.

I had my mirena taken out this afternoon - quick and painless (but sad). The nice GP (a mum from school ) said if I get periods back and they are still heavy then to go for an ablation (sp?) and was quite shocked when i said onc had suggested Zoladex injections - said that was a sledge hammer to crack a nut approach (SEs would be severe). Anyway fingers crossed I have no periods due to Tamoxifen - will cross that bridge if I come to it.

Glad the planning went well malt, 10th isn't that far away really.
Hoping to get my date for surgery when I see the surgeon tomorrow. I do feel better when there's a plan in place with actual dates I can write in the calendar!

Hi kitkat, the fanciness of the dressings means that they're only changed twice a week, so I don't have a day to day view of progress. Really really hoping it will be ok for chemo on 6 February but trying not to obsess. (Hah. Not obsessing is not my strong point right now).

I sympathise with the wait for rads, malt...

Hi everyone, just checking in to say that I got discharged today. I'm hoping I sleep better in my own bed. Wishing everybody a good night's sleep.

Wren and... (Mind give blank, sorry), you're both absolutely right. I'm nervous and reluctant but more grounded. Count down now. Beginning to tell pupils, one by one, that I'll not see them fir a few weeks. One gorgeous boy of 8 had the widest grin ever at hearing this news. So funny!

DS being shit bag. Scratched my au pair while I was working. I'm worried. Very.
I wish you all a restful, pain free night. You too, Really!
Xxxxx

Kitkat, I have done zolodex for six years now, no side effects as far as I can see. I need a sledgehammer though as I have a massive nut!

Goodness, I understand how guilty you can feel by being ill when your children need you. It is horrible, but we can only do our best.

My Dd is frequently in my bed with nightmares about my cancer. It breaks my heart, she shouldn't have to worry about me, she is only a baby.

Goodness, your comment about your cheerful 8 year old student made me laugh!
(((Hugs))) about your daughter's nightmares, Trice. It is the worse thing, isn't it? The worst thing about being forced to have an operation over Chrstmas was that it really rammed home for my 3 kids that this was serious - very devastating for my daughter who collapsed in tears at school lunch.

Wren and Trice I'm so sorry to hear that your children have been struggling and get upset. As we all know we want to protect them more than anything so it must be very hard to see.

Good news to hear that you have been OK on Zoladex Trice -do you have monthly injections? I'm still hoping I won't have to go down that route but time will tell.

My good news today is that I have lost 2 kg since stoping taking Amlodipine (5 days ago) which I reckon must be losing all the fluid that built up . And as my dentist predicted my gums have stopped bleeding completely - happy days but it would be nice to be given a decent level of information when handed all these pills.

I've nothing on today - still waiting to hear when my new car will arrive. I'm not driving at all at the moment - even though I feel fine I am trying to be sensible to give my implant the best possible chance of settling into the pocket.

hi updating good to hear from you - glad you're coming home. How is your arm after your sentinal node biopsy? Are you in much pain? Sure it'll be better to be in your own bed. Hope you continue to recover well. When do you get your histology results from op?

kitkat it is really great to hear about you putting on bikinis and heading off on holiday. I wonder if you or other mx with implant could give me an idea of recovery after a mx? how long and painful is it, is I suppose what I want to know.

reading other posts and thinking of you all and your DCs.

Hi Harrietv - when I had my mx I had a tissue expander put in at the same time but no nodes removed (as tested previously). I was in hospital for 2 nights and came home with 1 drain in. I was pretty much Ok as soon as I got home - being sensible but perfectly able to look after myself (bar a few incidents when I caught the drains on drawer handles!!). The next day I was out and about - for a walk and lunch (complete with drain and flat boob). The drain was taken out 4 days after the Op and dressings off after 10 days. The worst thing for me was struggling to sleep on my back and with a drain in .

Hi Harriet, my arm seems fine so far, thank you for asking! I got a list of instructions including to be extra vigilant with the antiseptic in the event of an injury that breaks the skin. I'm forever cutting myself when cooking so I'll have to be a bit more careful in future! I'm only taking pain killers at bed time and it did help to be in my own bed. I don't get the results till next Wednesday which seems like an awful long time off.

I have been signed off work for a whole month. A whole month!!! I'll be stir crazy by the end of the first week - I will be negotiating with the doctor when I go in next week. I need the doctor's okay to work in order to be covered by work insurance whilst at work, is my understanding. No way can I loiter around the house for that long though - I need to go back to work on mental health grounds! Plus the house gets pretty chilly during the day as the underfloor heating only works at night. I can (and will) put the electric radiators on as necessary but it's a bit like burning euros with a match and only marginally more effective.

Hi everyone, just had a bit of a wobble so here for more hand holding please!
DF has got a letter today to go for a CT scan. now this was meant to happen before his follow up appointment which is on Monday but the scan is for the following Monday
Anyway, it's bought back all his fear again, he's shaking like a leaf bless him, I hate to see him like this, he saying things like 'there must be something very wrong if I need a scan' etc etc, all doom and gloom,
I don't know how to reassure him as I'm thinking the same! Trying to be brave but it's hard, it's gonna be bad news on Monday isn't it? I can't cope

Updating - after 1 week off I got a Fit Note specifying that I could work adjusted hours to suit - that meant that I could work (or not) - and I have carried on like that for 8 months. Like you I had to work to save my sanity in the early days but to be honest it did get harder and I don't do much now - anyway it solves the insurance problem.
Are you not in the UK? Maybe you don't have the Fit note system?

honeybee - no it's not necessarily going to be bad news. It is very scarey being told that you need a CT scan but it is just a standard diagnostic tool. In my treatment the very worst thing for me was being told I neded a whole body CT - I just didn't want to think about additional problems. Like many others on here mine was clear and you DFs maybe too -or it will be useful in determining the treatment plan.
He's got a lot of waiting to do bless him.

Hi Kitkat, no, I'm not in the UK, I'm in Belgium. I have a certificat d'incapacite d'activite (and no accents on my qwerty laptop!). I've never been off sick for more than a day so I don't really know what all the options are. The websites where I might be able to find out are in French or Flemish. My French is survival level (official terminology apparently) but searching for information requires having the exact term in French. My Flemish is non-existent! I rely a lot on the Office Manager at work and she has been brilliant at helping me through the bureaucratic maze.

Related to the whole bit about getting treated at a French speaking hospital; I think I might have had a full body CT scan except that I thought of it as 'scintigraphie osseuse' 'cos that is what it said on my appointment sheet! I can't find a translation other than 'bone scan'!! Or maybe it was a PET scan as I had a 'product' injected several hours before the scan.

Anyway, the results were good so I can second kitkat's comment that it isn't necessarily bad news. I had 6 different diagnostic tests in the 2 weeks between the first appointment with the surgeon and actual surgery. And for most of them, I actually understood what they were going to be!

Honey, it's scary being booked for scans. I had a CT scan and a bone scan and thought that just the bookings meant they expected the worst and was terrified. Not the case, as others have said. It's all about information and being equipped for the best decisions possible.

It's very very upsetting managing all the fear without any of the information, but cancer treatments have come on leaps and bounds in recent years. Am I right in thinking that you're not even sure about a cancer diagnosis?

Fingers crossed for you. It is a tough time. Let us know.

Thanks kitkat and wren it's so helpful to ba able to 'talk' to someone about these things, I wish DF could be he's old school and keeps everything in,
wren he hasn't had any diagnosis yet, but surgery last week was to laser away whatever is in his voicebox, but the surgeon ended up just taken a biopsy and DF didn't ask why, so now thinks they didnt laser it as its cancer
Thanks everyone x

honey - as kitkat and wren have said it's standard to do scans etc, it doesn't mean the Drs definitely think it's spread. It is scary as hell though getting the scans done and waiting for the results. That "sick with fear" knotty feeling in your stomach that just won't go away is awful

wren and trice - it is so hard when it impacts the kids isn't it? DD has struggled a bit, though she won't talk about it at home. I'm so glad school have a lovely pastoral care worker who has been checking she is okay.

Well that's it, I'm done (other than 10+years of hormone therapy of course). I had my last rads today. The beast has been dismissed, let's hope it stays that way! It is a very odd feeling after all these months of treatment, partly "yippee I'm free" and partly "well what do I do now then? what did I used to do before all this?". I'm intending to go back to work w/c 10/2 (going to GP in the morning to talk him into it, they had originally said 6 weeks off post rads, I talked them down to two!) I can't be doing with sitting around, that's for sure, like many on here work keeps me sane. (I worked from diagnosis until the day before first chemo as it gave me less time to worry about things!)

honey - and I should have also said, they don't definitely know it is cancer yet either (hence the biopsy), they are just trying to build a full picture so your DF can get the best treatment possible.