**TAMOXIFEN 18**

[MaryAnnSingleton]

oh my,we're starting our 18th !

Looking for that book right now, marmite, it sounds fab!

I'll have a hunt for that book too, Marmite. Good tip.

OneinEight and Righttit, here's a few random thoughts on chemo for you. I had 3xFEC, then 3xTAX in 3 week cycles. If either of you are having Tax that has very different side effects to FEC, so say if you want more thoughts on that.

• The thing that got me through is that after the first round you see a pattern, so can plan life again. It's far easier to get through once you can tick off the days/ symptoms and know they're transitory. Obviously everyone's different and I doubt anyone sails through feeling great, but even if you're unlucky enough to have bad side effects, they will still be contained into a few days of each cycle. I know when I started I thought I'd be bedridden for the entire time, but it really isn't like that. Once you know how your body's going to react you can plan treats in for the good days - I went away for weekends. I even camped on Hadrian's Wall. But lots of us have managed to have good times through it, so hold onto that, as you will too.

• If you're having FEC, it makes you pee red! They inject it very slowly from an alarmingly huge container, through a canula into your arm (takes about an hour). A nurse sits with you the whole time to do it. They put a saline drip in afterwards (and before too I think), to flush your system. Drink lot of water the day before and obviously try and go into each cycle as hydrated and healthily as you can.

• Try and get a dental check up before you start. The chemo targets the fastest growing cells, and those in the mouth are hit hard. Dentists advise on how to brush, clean gums when they're so vulnerable, so it's worth getting them to help you through. Also, gargle obsessively throughout. The hospital should tell you which mouth washes are best.

• The main side effect which hits first is nausea. Not everyone feels sick, but it can really help to take whatever anti-sickness drugs they give you before you feel any hint of it. It's easier to stop before it starts iyswim. If you are hit by nausea and the drugs don't work, get onto the unit and get them to prescribe something else. They start you on the lowest level of anti-sickness drugs, then ratchet you up to the heavy duty stuff if you're suffering. Topsy has something called a driver inserted in her arm which sorted it for her, but I was never offered that. Don't put up with sickness though, as there's lots they can do to stop it.

• I found I felt worst on days 2-5 (sickness), then on about days 10-12 with mouth ulcers. But by day 14 I was out from that and the final week I usually felt pretty good.

• Watch out for anaemia. They'll check your bloods every cycle, but chemo does take it out of you and anaemia's common, so try and eat lots of iron rich foods if you can.

• Hair loss will be on about day 14 of first cycle. It's a sod, but it feels better once that's done and dusted. If either of you are tempted by the Cold Cap, I gave it a whirl and had (some!) success, so yell if you want to know more.

• The unit will give you a hotline number to call. Use it! I was a bit shy of it, as thought it was for emergencies only, but it's to help you through and any small worries or niggles can easily be answered if you call.

• Get a digital thermometer and suss what your normal temperature is before you start. If you get any sort of a temp on chemo, call the unit. Infection is common and can be serious, but if you spot it early enough it's usually easily dealt with and could avoid you a stay in hospital.

• Get some good distracting DVD box sets - I found it hard to read on low days, and daytime tv makes you want to scream !

I honestly am not at all brave and muddled through quite reasonably. I work from home, so it was easier to do, but I worked all the way through without too many problems. I had a few infections, a fair few bad reactions to drugs so so it wasn't plain sailing, but it was definitely doable. It's one heck of a thing to get through, but it's only scary at the start and then it's just a sod and a slog to the end.

YOU WILL BE FINE.. And feel free to moan and share with us. That's why we're here.

phew, long post. Wanted to put it all down before I forget. Waving to all today. So windy here. Better do some work..

good advice from smee
Waves to marmite !- glad insides are feeling better,pesky scalp though.
My dh was lovely throughout active treatment but we didn't speak much about it all- neither of us are given to outpourings (not necc. a good thing) The bcns at my hospital were always cheery and optimistic in their outlooks-perhaps they are exceptional- they are both fab and always positive. I am in touch with mine for all kinds of bolstering up.
Ugh- dusting and whatnot today before working- soooo boring but I won't be able to concentrate unless I do it.
Tomorrow an outing with one of my oldest friends to look at houses -she is moving from London to here -very exciting-she is an academic and has taken voluntary redundancy from university. One house is up my road,which would be fab.

Ooh how exciting to have an old mate nearby!

On the chemo thing - what smee said. I knew she'd remember more than me.

I have found that book online and read one of the sample stories instead of working - called 'Perfection'. It is great! I can see I am going to have to buy it.

smee, that's extremely helpful. Thank you so much!

There is a chance that I will be switched to Docetaxel for the last 3 cycles. If I understood the oncologist correctly that would be if the FEC has too much of an adverse effect on my heart. I suspect we'll know more about that after the first cycle or two so I may well come back to you on this.

I've already started a temperature diary.

Box sets in waiting already: West Wing, Merlin series 1 - 3, Dr. Who series 1 - 5 (Is series 6 out yet??), all the Harry Potters, Lord of the Rings and a few dozen stand alone movies I wouldn't mind watching again. "I'll think about that tomorrow. Tomorrow is another day."

As for DH, unfortunately both his and my best friends aren't geographically close to us so it's not really feasible for either of us to just have a night out with the lads or the girls. One of our best friends is coming on Sunday for a few days and bringing his fiancee who we've not met (other than on Skype) yet. I'll make sure DH has a chance to have some time alone with M while S and I go off and do some female bonding. One thing I'm going to insist on is that DH keeps going to our dance class even on the weeks I don't feel up to it. Spare men are always needed!

Speaking of BCNs, I must ring and make an appointment to get my permanent bra insert. I'm still using my softie...

This morning's post has brought yet another appointment!! This one is for my bone density scan. The bad news is that it's for 20th January - 3 days after the first treatment. The good news it that the only reason I need it is because of the Arimidex I'll be starting on once the chemo is complete so I will ring the Orthopaedic Hospital and re-arrange for a couple of months down the line.

Best news is that I think the boiler repair is nearly complete!! Fingers crossed I won't be fighting Hopeful cats 1 and 2 for the oil fired radiator for much longer.

RightTit, geroff my DVDs!! You've got exactly the same ones as me

Smee's advice re Chemo is great. I did FEC and Docetaxel, 4 lots of each. Both do-able barring last Docetaxel which was a total s*d. Worked through all of it. I took manuka honey (1 tsp a day) and multivitamin/mineral thingies (one with selenium in is good) and extra Vit D and also Lactoferrin. Plus ginger supplement for the three days building up to each chemo. Could be sheer coincidence that I coped really well (considering). But some of it may have helped.

Once you to get the Docetaxel stuff, watch what it does to your fingers/toes/nails. Insist on frozen gloves for hands and feet, which stops it damaging the nerves/minor blood supply when they do the infusion for 50% of people. I was very lucky and only ended up with fairly minor nerve damage and didn't lose any nails because I insisted on the frozen stuff. Well, ok, I took my own frozen veg for my feet

Camel, arrgh re the more waiting. Have a . Anyone else for one?

Did I write that I was seeing my specialist in April? Mad girl...it's January 23rd. Duh!

Thought it was a heck of a wait, Amber. Glad you're seeing them sooner.

oh that's better than April amber !!
Hope you are soon toasty warm RightTit
Sometimes sorry to ignore your comments about ds- we showed him the email and had a talk and he was ok about it- a bit cross of course, but it was ok.

Ah, no 'tis fine, MAS. I am glad he was OK about it.

am hoping he has taken it to heart- I did the talking but dh was there- crikey,being a parent is hard isn't it ?
Have just got a copy of a book called 'The Broken Mirror'- about Body dysmorphia- it's sometrhing I've been thinking about and it turns out to be an offshoot of OCD 1-it's a huge thing so not sure how far I'll get...(the book is huge I mean )

Oh good. I thought it was Book Dysmorphia for a minute but yes, big subject and lots of thinking.

arf !!

the book would think it was huge

It sounds like hard going to me.....

And not typical light bedtime reading. But i hope it is enlightening and helpful.

Far more frivolously, I've just given up on Martin Chuzzlewit for the second (and, I think, last) time. I love Dickens but don't have much interest in this one. It's OK but 230 pages in, I just have no appetite for the remaining 500.

Being a parent is very, very hard. You rarely know if you are doing it right. All you can do is try and then hope for the best. But he's a thoughtful boy, he may go off and knuckle down.

Oh I think I'm huge! Does that mean I have body dysmorphia and am really a sylph?

That depends. If you can slip into a size 8,10,12 or 14, then that'd be fine.

Oh. I'm just a porker then. Thought so.

Me too. Pass me the fbs, will you?

All gone

Did someone say fbs?

have eaten some choc raisins found in the fbs carrier bag...

Am out of Mini Twirls

Found a Daim bar I'm supposed to be dieting but this is a really bad week to diet, so I'm delaying it to next week instead.

Smee, thank-you so much for describing how you found the chemo in such detail - it really helps especially to know that it will not be six months of being bed-ridden. DVDs is a great idea - will head for amazon next - as I found concentrating on reading quite difficult after the op and agree with you that day-time t.v is dire. I am having four doses of EC (every three weeks) and then four doses of docetaxol with herceptin if I have understood it correctly so 8 cycles in all. Wonder why I'm not having the 'F' bit of FEC - bit of googling likely to happen. I am going to try the cold-cap thingy - but will not perservere if it is too horrible - have been told if you can survive the first ten minutes then it is do-able. Now if you could sort out ds1's temper tantrums and ds2's nightmares I will be sorted!

Amber - hadn't thought of vitamins but again great idea - will head off to chemist too.

Sometimes - I'm glad it isn't just me then that finds the nurses a bit depressing. I am quite capable of doing my own doom and gloom but at least I get cheered up by the lovely folks on here who have gone through it.

OneinEight, same as me then (inc Herceptin). I think there's research that suggests the F part of FEC isn't necessary if there's docetaxel and herceptin, as it doesn't add anything to the party.