*tamoxifen* 31- in the bus shelter with the cheap booze

[Gigondas]

Shiny new thread

I so agree.

I have only been diagnosed 3 weeks and I have changed so much. It has changed my whole outlook.

When the nurse asked me 'how do you feel then' literally 30 minutes after diagnosis I could have punched her and shouted fuck off loudly. A withering look and silence got my point across I hope. That will be mentioned in my feedback form.

Hello all. I'm resting after second day back at work and feeling a tad guilty that I've got off relatively unscathed when you all are or have been going through the dreaded chemo.

Just to add to the list of annoying things people say. When I got the (delayed) biopsy results finally last Friday, stating that I don't need any further treatment as the surgery was completely successful, I was congratulated by MIL. I asked her why she was saying "well done", so she said "it's all because of your positive attitude". So, I know she means well, but imagine if the opposite result had occurred (or may occur in the future), does that mean that I'm to blame for not having fought hard enough or for having had the wrong bleeding attitude?!

On a happier note - Pen - I was thinking of you today when I told a colleague about my whirlwind few weeks from Dx to surgery to back to work and he said that he'd recently seen a close friend through thyroid cancer surgery. Apparently the friend is doing really well and back at work. I don't know if that helps in any way, but hearing positive stories has been of some use to me.

Loma

Don't feel guilty- hope work not too tiring for you.

And think have mentioned before pen that I work with someone who is 6 years out from surgery and radioactive iodine treatment.

I do feel better for ranting on here. I think that you should have a get out of jail card to punch a certain amount of patronising twats.

I think I have definitely found my 'home' with like-minded people on this board.

I thought I would get flamed for complaining about the use of 'journey'

So it's not just me that can't stand all this pussy-footing about lark.

Kurri - I shall definitely use "when I go on a journey I usually have a choice in the matter and the destination." That's a classic response.

Actually, words and phrases tell you a lot about the sort of person you're dealing with and whether you do actually want to deal with them at all. I've realised how important it is to surround yourself with people you have trust in. Since my dx I have finally ditched my useless GP and have an excellent new one. I ditched the journey-merchant and insisted on being referred to another hospital. I have (so far) a very good oncologist who listens to me and doesn't treat me like a 4 year old. I also have this excellent NHS Psych so I feel well supported at present.

Smee - my knees and ankles swelled up after a walking holiday. Initial thought was that I had overdid the exercise. When it didn't clear up and got worse I was sent to rheumatologist. He dx's reactive arthritis and that it would disappear in time - but took bloods and a chest X ray. Next day he rang to say chest X ray showed shadow - which turned out to be 7cm tumour but 'caught early', so operable and fully excisable (by removing entire lung). Chemo is prevenntative in case it returns.

Feeling OK now - have just had half a large pizza. Will probably see it again later

Swear away!! I'm with the single mother who had an incurable terminal BC diagnosis and amongst the arrangements she put in place asked for her headstone to read, "I'm still bloody angry".

gigs It really is a bugger. The friend I went through the treatment with found her lump whilst first breast feeding, and feels exactly like you, that Cancer took away her chance to enjoy and care for her baby. And the scan at a year is horrible, you can pretend it has all gone away but it forces you back to all those fears and feelings.

AtoZ Half a pizza? Good grief!! Glad you are on the way to getting the first treatment out of the way. I found the sickness wore off after two or three days. I used to think of it as a bad hangover, it didn't put me off either, I had a few real stonking mild hangovers during my good weeks after our binge drinking, dancing on the tables throwing wigs and prosthesis across the room support group meetings.

I invested in several handwarmers, you can get them in ski shops, saved asking all the time, and they helped with finding veins for drips and blood tests as well as the cold hands, and as the treatment went on my circulation got worse as well (I have Raynauds at the best of times) I ended up permanently clad in fleece and woolly hats

Also don't be afraid to tell them every side effect, the dosages are crude and they calibrate then according to the severity of the side effects. They kept reducing my dose, all perfectly normal, it doesn't dilute the effectiveness, just makes sure it is the right dose for you.

And do feel you can talk on here. What's the point of experience if we can't give others the benefit of it, as I keep saying to DD's Godmother when she keeps asking if I want to sack her after one of her scandalous exploits!

Off to bed hoping I can wring 8 hours sleep out of 10 hours of sweaty writhing . Sadly that doesn't mean what it used to mean, as DH and his impersonation of a mini with a broken exhaust revving, backfiring and stalling is relegated to the spare bedroom / snorarium.

You have a way with words Gigs

MAS I noticed you are working on your family tree. That's been my main interest for several years now and has been a god-send for keeping my mind off things while I dig deep into the past.

Laughed at the 'behaving badly' party. I really have noticed a camaraderie between people facing this illness and that was reinforced during my hospital stay last night when I was offered painkillers when the nursing staff didn't have me down for any. I also received lots of 'favourte' drug recommedations scribbled on pieces of paper and handed to me. The closest I've come to this before is when you're in hospital for recuperating from child birth (we had a take away Chinese and wine on the covered patio outside our 4 bed room on a maternity ward, in what had been a former TB hospital! Happy days.

What I don't like is the pity that some people (including those in the medical profession) express when you tell them what you have. I got sick of hearing "I am so sorry". It actually set me back a lot in working through this dx. I thought - if they are pitying me they think I have no future and started to believe I had no future. I had no prognosis because until the had actually operated they didn't fully know what they would find.

So it was not until about 2 weeks after my op and got the histology report on 17 Dec that I started to realise that I might just have a future after all. I had spent the previous 3 months spent convinced I was about to die, either from the cancer or during the op which was decsribed as 'risky'. Survival didn't seem to be an option. I signed my revised Will the afternoon before my op and was very confused when I woke up in Intensive Care Unit a day later.

I am not yet at the stage of living with cancer. I still feel I exist in spite of the disease and that my hold on life with just one lung is quite fragile (even though I'm told there are rugby players with one lung). I'm still too frightened to have hope and make plans in case it returns. I am starting to take risks that I wouldn't consider pre-dx and can't undertsand why.

When my chemo head clears I am going to have to develop some strategies for the future.

I have not yet been reacquainted with the pizza. It's probably planning its reappearance at 4am tomorrow morning

, so was the swelling in your legs, etc related to the cancer or completely separate, AtoZ? I hate platitudes. I had a list when I was diagnosed, which DH and I ranked. Worst was my brother with: 'Well it could be worse'. I mean how exactly?! Hope pizza stays put. Glad you felt well enough to eat it. That's something at least.

Waving to Looma. Don't feel guilty. It's great you didn't have to have any further treatment. Bet work's a bit tiring. You must still feel blasted by it all. Don't overdo it.

I find the 'I am so sorry' really hard too.

I have started playing reaction bingo. 'Is there anything I can do ?' ' thinking of you ' etc etc.

I want to reply ' pay off my debts' 'treat me normally'

Hi Smee They said the swelling in knee and ankles was Reactive Arthritis - a reaction to an infection. However Dr Google has no references to reactive arthritis being caused by cancer - just by things such as bacterial infections, food poisonings, Lyme disease, E Coli type infections etc. So I am well confused. . Reactive arthritis is an autoimmune disease and I already have another auto immune disaese - Lupus but mine is discoid (DLE) not systemic lupus (SLE). So whether they were connected I don't know. Lupus is associated with Rheumatoid Arthritis - which I don't have.

The night before the opp I could barely sleep because the knee and ankle swelling was so painful. I'd gone up a full shoe size due to swelling. My fingers were slightly cubbed and my nails were turning in. However the surgeon said that when the tumour was removed the pain would go - which it almost has. Just a few twinges left which is probably the damage done walking/ cycling while I was suffering from the swolenl joints. Fingers are not looking so clubbed and nails are starting to straighten. I really don't understand it at all and can't get any explanation. The finger clubbing and nail turning first started 3 years ago. The tumour has been there since at least June when the ankle pain started - I'd have thought it would have been there much longer. Perhaps the finger changes where pre-cancerous changes.

I don't know and I don't want to know because I shall forever be thinking that any new knee/ankle pain is a recurrence.

So if anyone has any explanations could they please prefix with Spolier or Warning so I don't read it. Unless it is a 'good news' explanation in which case wave frantically. Thanks

my family tree isn't mine - I'm an illustrator and am making an illustrated tree for a client !

I get a lot of being told how well I look, as if they are expecting me to look poorly - unless they mean I look fat

I get told I look well to, just thought it was a euphemism for "You're not as fat as you were"

Looked for some alcohol earlier and found the galliano, so bit dozy this evening :)

Boss reminded me that it is not quite a year since I went back to work - by putting cancer in the box for sickness absence on my reference! Must have been chilled today as I didn't even get annoyed with him. Got accused of being demob happy too...

Am glad I wasn't just being thick, AtoZ. Does all seem odd, not to mention painful. Fear not though, as I am not capable of needing a 'spoiler' alert as am reliably clueless.

MAS's illustrations are fab. She takes commissions.

Pen, it gets easier as people get bored of the drama of it all. They run out of platitudes. You've made me remember me wanting to get thank you cards printed to send saying 'I'm not dead yet'. got so sick of all the cards landing on the mat with lilies on the front. They went straight in the bin..

Hi ho, hi ho, it's back to work I go. . . .

See you all later lovelies x x x x

aw thanks for the endorsement smee
Have a great day ned - lots of love.

Hope it goes well ned.

Very odd about symptoms but doubt there is much on google - tho have stopped looking as was told not to. My onc was very scathing about what you would find . And I completely get the lack of planning/hope thing as I struggled with that and it took me months to get my head around what it meant and balancing things- I know topsy and lots of others on here were brilliant about helping when I was moaning on and despairing.

And the "you look well " is annoying. As is buying flowers (when floored with sickness you want to be faffing to find a vase) or the "if you just eat well, eat x etc, it will help". A well meaning friend bought me a subscription to zest magazine FFs...

Anyone? Am also finding nights very uncomfy and hot but can't tell if it was chemo or not as always been a bit like this.

Morning All

Have a great day Ned

Have you all experienced the "head tilt" "you look great" thing ?
That's pretty special .
Especially when you know you are looking your absolute worst (my recent bad hair day - Elvis with an Afro - for example)

Just speaking to HND
She's had a bit of a rough night (although she's still cheerful and threatening to set fire to Mad Old Ladies on her ward)
Her drains failed over night and they keep poking her awake every hour to do wound checks .
So healing vibes and plenty of wine cake to her please .

Right , off tinternet and get the DC to school . DDs first day back at last

Ah the head tilt- that was the special ingredient in the Gp chat yesterday.

And for poor hnd- are they letting her out today as sounds like peace at home is what she needs? And drains can be a pita.

Thanks gig just what I need.

+ve drain sorting vibes to hnd setting fire to mad old ladies probably wouldn't help in the long term so I hope she resists.
+ve vibes for ned s fist day back too.
At the moment I'm in the happy place of thinking that I was lucky with my cancer as it was early and the surgeon seemed quite laid back about the routine-ness of it all. I'm not quite in denial, I know things could change, but at the mo have the paranoia in check (apart from a breastbone niggle). I guess I feel blessed to have found it and had it treated, esp as lost friend to colon cancer in September after too-late diagnosis. Sometimes I feel a fraud on this board as I have got off ao lightly, but you were all so lovely when I was going through rads, and the cake and here is so good and I do luffs you all and this is my safe place to vent.

Xpost gig that was your earlier I was snaffling...

No , HND has a 5/7 day stay to look forward to !
Mind you , she has a very active 4 year old at home (as well as her 9 year old) so staying in hospital for a week is probably the best thing !

Hmm delightful - although I do know that there were times when I was in that I was grateful to be in bed (albeit a proddy about one) than at home.

Therapy later which I am truly hoping will help me get some grip.

jane not a fraud at all- you have every right to be here (I felt like that though -think it is common among those of us that escaped chemo) a cancer dx is loaded with all kinds of stuff and you are very much worthy of care and attention.
Hope therapy is good today gig
lots of love to hnd and grr about pesky drains- hope she gets lots of rest and not too much annoyance from mad old bats
I have a huge bouquet of flowers sent from dear friends who I spoke to at the weekend and had to tell of my health stuff. She is waiting for an MRI to check on a possibly ruptured implant (not a dangerous one as it was done yrs ago)