*Tamoxigang Christmas Party* - 45

[Tiny100]

Morning All!

We're nearly in December, so let's get the festivities started.

[adds mince pies to the trolley]

[trice]

Happy birthday Really. The Great thing about chemo is that every illness you have after it has finished feels pretty minor. So all your future birthdays will be fabulous in comparison to this one (and when you have your hair back you will never have another bad hair day) . Yay!

I went back to guiding tonight. I have joined a new brownie pack as an occasional helper. I am going to be an "Owl"!

[kitkat1967]

Hello

[kitkat1967]

Hello

[kitkat1967]

Lordy - sorry about that. Was just going to say hi to Trice and that I used to help at Cubs and am looking forward to going back after Feb half term. Well done on becoming an Owl.
True about hair as well - I even love my bit of grey stubble!!

[malteserzz]

Hello kitkat lol !

That's great trice dd helps out at brownies as part of her duke of Edinburgh award she loves it. My mum used to do it years ago and was thrush !!

Off for my radiotherapy appointment this morning hoping to find out more about it. Had my initial chemo appointment at the same place it's the most depressing waiting room ever full of very old very ill looking people but at least I'll be prepared for it this time

[Gigondas]

Good luck malt- my radiotherapy waiting room also the most god awful depressing place too . Plus I missed out on joining in the comparative prostate cancer chats ( am not joking).

Had second lot of chemo for this cycle yesterday and had to have an Iron infusion which I wasn't surprised about as had felt the horrid dragging exhaustion that get with low red blood (plus white count low too). So very lazy day (and don't feel so bad about being tired last week now I know this).

Will try and catch up- hugs to you really and hope you are feeling bit brighter after a night cuddling teddy.

[Gigondas]

Helping is good tho but I am concerned about it leading to thrush like poor malts mum caught.

[smee]

Hello all! Waving to Gigs. Hope infusion helps. Anaemia's horrid.

Malt, hope your appointment goes well. Avoid all those 'Chat' type magazines people 'kindly' leave in the waiting rooms. They always have an awful Cancer story in. Are you getting your tattoos today?

kitkat, thought you'd hit senility when I read that double 'hello'.

Not much to tell from me. Just saying hello and wishing you all well. I do think of you lots and am supportive in spirit.

[kitkat1967]

hoho - I'm hoping to move on form chemo brain so hope I'm not going senile - am blaming my tablet.

I also chuckled at thrush - although I used to help at cubs ever yweek I drew a line at a uniform or a name!!

Good luck at your appointment Malt - at least you will know what to ask about from everyone else's recent experiences. You'd better take a book or magazine to bury your head in whilst you are wait!!

Hello Gigs - depsite your anemia you seem to be plodding on OK with your various chemo's - have you got many more to go? Enjoy your rest.

And hello to Smee - we've not heard from you for a whilst so I assume you are busy with work and life in general .

[Shootingatpigeons]

gigs hope the transfusion helps

wren it sounds as though you have a wonky Oncy. We had one at our hospital, he told my friend, with 7 nodes, it was "really bad". She sacked him and she is still here 12 years later. Listen to Ann, she isn't the Marvin the depressed robot of Oncys it is understandable really, poisoning people for a living would do that to you......

A London meet up is being planned. If you are interested then do please message me (if not in contact already elsewhere) with dates you could make in March, probably weekends to suit those who work, and what would suit you, lunch seems a possibility so everyone could travel.


Lots of love to all.

[Shootingatpigeons]

wren also bear in mind that twelve years ago I was given a 60 % chance of making five years, with just one node. (I was under the impression they only give five year survival rates because after that your chance of dying of BC is actually less than the average woman, And you are more likely to die of something else) Now I think the odds I would be given would be much better, the odds they are giving you now are for women who were diagnosed 5/10 years ago and diagnosis and treatments are getting better all the time. Who knows what will come along in the next five years. To my knowledge in the time since I was treated they have become much better at hormone therapy for ER+ and use much more humane chemo.

[smee]

Yes it's freaky that five year survival thing, but I was told it just means that after that your odds are far better. Most 'scary' cancers return well within 5 years. Aggressive ones especially, so if you get to five it's v.hopeful that you'll live to drive a zimmer frame.

Wren, I had 4 nodes affected and am still here and clear (fingers crossed!) nearly four years later. x

[GoodnessKnows]

Stressful day and it's (op and recovery) have not even started yet:

I could scream and shout right now and then promptly sob
I've had to make / take 12 calls re medical things
Talk to DH's 97 yr old grandma who was in tears and am up against challenges such as getting codes for my insurance company from one of the two surgeons who isn't on their list of approved one (listed as expensive) and who's on holiday. Secretary can't give it to me until he's back (22/1). And I've been called for pre op today to go tomorrow, having been told this would to be necessary as had MRSA test only three weeks ago. Going tomorrow. Also, have been called today to go to Harley St on Saturday for urinary tests as tumour is enmeshed with nerves controlling bladder etc. Of course, I then had to get approval code and ring secretary of surgeon on holiday for that who didn't know and who hadn't told me they'd be contacting me, hadn't sent them letter far enough in advance for there to be time for me to get any necessary tests done before the op (can't be done on day) because the urinary consultant is ... (wait for it)...going away.
I'm back to back as I'm trying as usual to be a mummy, teaching 5 hours today and sorting out the house as I won't be able to touch a thing once op done. Then useless call from health company to be told I needed the f.ing code - regarding which I'd called them already today to tell them I'll get for them as soon as consultant is back (22/1).
Grrrrrrrr
Oh, and DH is going away Saturday 5pm until Friday next week (3 days before my op.) to India.

[Marshy]

Hi all,
Quick hello from me, just home from work. It's going ok. I did tues/thurs last week and doing mon/weds/fri this week, all short days. Today is the first day I haven't felt completely zapped by the time I got home, so it's going in the right direction. I'm still looking forward to my day off tomorrow though

I've been following the 'odds' discussion closely. The whole uncertainty thing is such a bugger, isn't it? My final histology report left the door open to the possibility of there being some invasive cancer that they missed so even though my prognosis is very good I still sometimes torment myself thinking about something which might have defied detection and then not even have been zapped as I didn't have chemo, though i was obviously pleased about that. I keep forgetting to take the sodding tamoxifen as well, so that's not going to help, is it?!

I really came on to say good luck for your surgery on Friday kitkat. Hope it all goes smoothly and you are pleased with the new you. I'm quite fond of my new boob now and my review appt to look at lifting the other side isn't too far away.

Hugs for everyone. I've been fantasising about Chinese food whilst at work, so off out to get some!

[Marshy]

sorry goodness cross posted with you.

You sound like you need

[Gigondas]

Or for goodness. The insurance companies are a head fuck at best of times when you add In all the pre op tests and everything else. If it helps,I had a lot of tests and pre op around damage to my ability to swallow or talk. Came to nothing as even after op wasn't that bad at eating.

Marshy- am at Chinese food. It's all blood boost health stuff here!

Kitkat good vibes for Friday.

My odds are probably shittest of all so I don't ask , try not to think of it and remember that no stat anywhere are going to tell you about you . I am looking at two fighting dds who according to odds I had low chance of having.

[Lilymaid]

Just looking in to say hello. I'm now working 3 days per week and slowly (far too slowly ) am feeling less tired. I'm still getting a lot of bone ache (SE of Letrozole) which doesn't help sleep but that seems to vary from day to day - and I suspect that I ache less on/after active days than on those days when I slump on the sofa!

[Wren48]

Gigs, you're right. No stats anywhere will tell you about you. The fighting dds made me laugh.

Goodness, that is a tough day. I know those phone calls when it feels like you're on some mad circular dance. Managing hospitals and illness seem to need so much administration and take up so much time. Really good luck with getting it sorted.

[kitkat1967]

What a day Goodness - I hate to ask but would it be easier if you stopped work? I have worked through all my treatment (part-time) except for about 10 days just after the diagnosis whe I was whizzing around getting scans and biopsies etc. and I just couldn't cope with anything else (mentally as well).
Also have your insurance given you a single point of contact? I have a nominated nurse at my company (due to it being a high value claim) and she has been fantastic - probably easier in my case though as I am treading a tried and tested path whereas you are more unique!!

Thanks Marshy - I'm still quite calm about Friday but will probably be more excited tomorrow .
I had some good news today as my latest glucose test has my levels down to 10.1 - normal is less than 5.3% so I've a way to go but as I started at 20 and was 15 4 weeks ago it's going in the right direction .

[Wren48]

Great news about the glucose levels, Kitkat! Nice when things go in the right direction.

[malteserzz]

Kit kat good news about your glucose levels :)

Goodness you have got a lot on your plate bless you

Good to hear from everyone else

Radiotherapy appointment was ok, should get my planning appointment next week and start the week after

[MomOfTwoGirls2]

Hi Goodness, I'm another who are wondering if you should consider taking leave from work? Would you get paid for while you are out?

I took leave as soon as I got my diagnosis, and will be paid full salary for 6 months. Then I have an insurance policy through work which will pay me % salary until I am signed off fit for work again. Do you have anything like that in place?

Not working will allow you preserve your energy, and do things to keep your spirits up. I had a month between leave and my first surgery. I used it to go for walks with friends, which I think stood to me during surgery and subsequent chemo. I also had time to meet friends for coffee and lunch, and to get jobs done around the house. It's still full on here once DC get home at 3pm, with food, homework, violin practice, after school hobbies, etc. So I'm going full on from 3pm until at least 9am anyway.

It doesn't necessarily need to 'give you more time to think'. So long you fill your time with nice or busy things to do. For me, it took a lot of stress away.

[MomOfTwoGirls2]

Oh, and I'm still on leave. Surgery was followed by Chemo, then I'll have rads. Then I am going to take another month to recover, and start back slowly. All in all, I'll end up out of work about 10 months.

[GoodnessKnows]

Hello all. Head reeling so can't remember who to thank for your advice, and - but it was much appreciated!
Its certainly a part-time admin. / PA job, this secretary and health company malarky.
As for work, its the only thing jeeping me sane at the moment. I work fir myself, from home and find it both satisfying and enjoyable. Im lucky. As i work with children (tutor/ assessor), i am fully absorbed in what I'm doing - which has been a blessed relief and escape.
I thought I'd have two weeks of normality (mummy, work) before the op and 'recovery'.
Im pissed off to the max to find that I'm being cheated out of that, too!
Since DH is away this sat night, i posted on FB to see whether any friends would go dancing / a salsa class (have sudden urge to do things I won't find easy for a while). Got two pants responses. One said she had plans (no invitation fir me to join her). Fair enough, prob. with friends, etc. other was from someone going to Westfield. Would have been nice to have been asked along or, heaven forbid, for her to can it to go out w me. Feels like precious time. Have tentative plans (based on sick children) to go out with a girlfriend to the cinema. Next Saturday, I'm going dry slope skiing! Lol
Having pre op tomorrow. Hate blood tests. Properly go unconscious if not laid flat. Give me spiders or mice any day. But things in my veins. Nooooo

As for having a direct line or contact with health insurers, its not possible at mo as biopsy was inconclusive and only confirmed diagnosis of cancer get that, according to the company. I did ask. Idiots told me hey needed to let me know something important to update me and called me to tell me to call them (blah blah more time wasting). I called back to be to,d they need the other surgeon's code! Pleeeeeeeeease! Id called and been told that yesterday when i called both secretaries to chase this info up. I called back today to say that ill get the code from the secretary on the surgeon's return from holiday. Om fing gd. I did tell them how frustrated i was to be called to call back to be to,d something id called about and to,d them myself hours earlier. Think he got the message.
In short (oh the irony), I'm sure that my feelings aren't unusual:
I should not be going through this. I have a 3 and a 6 year old. It feels like there should be some clause in the universe protecting people who have or do XYZ from experiencing thus... shit. But no. Appears that I'm as vulnerable as everyone else.
Official apology:
If you have got this far through my Ranty-Post, I'm sorry for not having read anything anyone has written and for my whizzing head to be so far up my arse at the moment that i cant get it out. I will be sure to ask the surgeons to fix that problem too - whilst they're down there

[GoodnessKnows]

Tutor and assessor who clearly can't spell (fat fingers).