Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

21st TAMOXIFEN !!

994 replies

MaryAnnSingleton · 15/03/2012 17:41

here we are- how did that happen ?

OP posts:
Gigondas · 02/04/2012 20:01

Hands round mini eggs .

Thanks kurri

When is your next cycle?

Looking on bright side, if I have to have this drain in over Easter, do you think I should decorate it? Maybe some kind of toilet roll doll type thing (it's a cyclinder) - maybe with Easter bunny ears?

Gigondas · 02/04/2012 20:03

Next cycle is to Ned

KurriKurri · 02/04/2012 20:09

How to decorate your drain for Easter Grin

Gigondas · 02/04/2012 20:10

Can't do link. I need to find something for big gig to do. And it should involve pipe cleaners

Figgyroll · 02/04/2012 20:22

Evening everyone.

More waiting KK? He and his sidekick secretary are indeed liars, liars.

Topsy, has DH grovelled apologised yet? Hope the BC nurse apologised for the long wait.

Gig, boo re drain and double-boo re nanny situation. As it's the Easter hols here (and, I assume, where you live too) do you know any nice young reliable student girlies who could at least come and spend some time with you to keep DS2 happy and occupied and do a few jobs for you?

Ned, haven't had a period since a few months before dx so not affected by that but definitely being plagued with hot flushes on an hourly basis especially at night. I am sleeping with summer duvet and windows flung open. Luckily DH and DSs are hardy creatures.

Gracie I used the Annabandana site and have several of their ready tied scarves but agree about them being a bit too 'full'. Tbh it was just as easy to buy a huge scarf and tie it up myself. If you go on Youtube there are several scarf tying videos to watch.

Can I ask a holiday question? We have a week off at the end of May at it looks like we are going on a cruise to Egypt and the Holy Lands with Thompsons. We've been on one of their cruises before and loved it. My question is about insurance though. They are charging £49 each and of course I will have to declare that I have had BC and am now 'In Remission'. Is that the right term? Woluld it be better to arrange our own insurance and, if any of you could recommend a company, that would be a great help. I could ring them tomorrow and see if they are a bit cheaper/will cover me.

Have Jammie Dodgers and chocolate digestives for the FBS trolley. I am buying FBS that I don't particularly like in the hope I wont be tempted. Mind you, when in one of those desperate moods for chocolate, even the dog's treats have looked tempting. Grin

NedSchneebly · 02/04/2012 20:31

Thanks ladies - yes, next one is Wednesday. That's my FEC done.

Am a bit Sad and scared about the thought of moving on the Docetaxol. Feel a bit like back to square one, with not knowing what it will be like and whether it will be as awful as the first FEC. Everyone says how good it is that I am halfway, and I know, rationally, that it is, it feels a bit overwhelming. Still such a long way to go. Sorry, wallowing a bit at the moment, feeling a bit miserable. . .

Figgyroll · 02/04/2012 20:42

Ned, I did my chemo the other way round - Docetaxol (along with trial drug Avastin) first three cycles followed by three lots of FEC and personally I found FEC by far the worst. FEC made me sick and nauseaous for about 10 days each time. Whereas Tax made me feel a bit woozy/odd for a couple of days and then I was fine. The only problem I had with Tax was that I went neutropenic each cycle (raised temp after a week and rushed to A&E then into isolation for a week) but the consultant thinks it was because I was being given a double whammy of chemo at the same time Tax plus Avastin. But even when I was in hospital I didn't feel unwell, it was just that I had a high temp indicating an infection somewhere (they never did find out where despite lots of blood samples etc.) So, although I ended up in hospital, I didn't actually feel as ill or as emotionally low as I did on FEC. Others might say they preferred FEC but, as you can see from reading on here, we're all different and I think the only thing you can do is make a note about how you're feeling each day after the first Tax and see if it repeats the second and third cycle which will give you an idea of your good and bad days.

Figgyroll · 02/04/2012 20:47

and forgot to add a hug for you ((((((((((((Ned)))))))))))), it's okay to feel miserable. You've been through such a lot emotionally and physically. It will soon be over.

topsyturner · 02/04/2012 20:51

Dunno what's up with DH .
He's not done anything specific , he's just being a bit of a feckwit .
And then when challenged , completely denying that he's being a feckwit !

Think I might go online and look for shoes , Kurt Geiger emailed me and told me they were missing me Grin

topsyturner · 02/04/2012 20:52

Ned big hugs

NedSchneebly · 02/04/2012 21:12

Thanks topsy definitely paranoia kicking in.

Not too worried about this last FEC this week, as I have been feeling really well this week, and I'm sleeping so much better, so am hoping that it won't hit me as hard as last time, which I went in to with chest infection and no sleep.

I think it just feels like I've got such a long way still to go. Fear of the unknown, I guess. ignore me, I'll get over myself soon. . .

graciesmall09 · 02/04/2012 21:28

Popping on quickly before my internet disconnects me again.

Hugs to Ned

gig that is awful about your nanny, typical these things always happen when we really don't need the hassle. You really could do with someone a bit more reliable.

topsy I still haven't pmd you - stupid internet is throwing me out and I haven't got all all day. Three weeks is just ridiculous for your BCN to phone - not that I have any experience, so far so good with mine, she usually calls me straight back. Hope she apologised. Hope DH is out of the dog house :)

I finish work this Wednesday as I have booked leave for next week and then that's me. Talked it over at work today and they may set me up to do a few things from home but they said it is important that I rest and they would be lead by me on how much if any work I wanted to do which was really lovely of them. I got through all my appointments so CT scan and MRI Friday and then PICC line being put in on Monday 16th. Haven't got my chemo time yet but sure that will come through soon. Has anyone else had a PICC line in? Not looking forward to being awake for that.

graciesmall09 · 02/04/2012 21:32

Ned thanks for the link btw. It was great certainly told me lots of things I hadn't been told.

MrsmcN No-one mentioned the cold cap but I do have a tendency for headaches so would worry this might aggravate them. Don't really like the idea of losing my hair but sure what can I do. I just have to take what is thrown at me and try not to moan too much Wink

MaryAnnSingleton · 02/04/2012 23:17

argh, can't catch up as dh is sending me to bed - I really should go earlier- but waving to everyone and a big hug for ned - see you all tomorrow...xxx

OP posts:
topsyturner · 03/04/2012 00:14

Someone tell me to go to bed please ?
Am doing one of my "can't sleep" stints .
Bet you are all tucked up in bed asleep Envy

I shall write my Easter shopping list . Need lots of bags of mini eggs for the DCs egg hunt .
Let's see if we can stop pig/dog from getting to them first this year ...

Right , warm milk or vodka ?
One if them has to work !

KurriKurri · 03/04/2012 00:19

I'm still up topsy, can't be bothered to shift out of my armchair Grin

Warm milk to drink, - have you got a good book to read?, even if you can't sleep, you can lie in bed and rest.

topsyturner · 03/04/2012 00:32

Hiya kk
Am catching up on some tv , and pottering about on tinternet .
Have just started a new book on the kindle , but it's quite exciting so I know that would keep me awake Smile

Also just tried to go up to bed , but mysteriously a 12 year old boy has appeared on my side if the bed Grin

Why can't you sleep tonight ?

Dammit , now I'm hungry ...

OneInEight · 03/04/2012 06:15

Gracie, goodluck with your chemo - it is frightening at this stage. I had a long weep in th carpark before going in for me my session but it was not as bad as I expected. Yes, I did feel sick - you are having a driver aern't you so that should be well controlled - but for two of the three week cycle I have been feeling well enough to go into work so better than I was warned. I have done only the EC so far (not on the F bit) and start the docetaxol today.

I did go for the cold cap. Smee (Ithink -waves enviously to New York) recommended taking paracetomol or similar 1 hour before having the cap on which worked for me to avoid any headaches. I honestly found it not unpleasant but unfortunatly for me it did not work completely so did develop a bald patch after the second lot of chemo so wear a hat or wig in public but am comfortable around the house with no head-covering. I have given it up now as I would like the hair to grow back evenly - at the moment I have a grey stripe, a bald stripe and a very dark stripe - bit of an eccentric look.

Figgy - it was so great to read your post this morning to say you found the docetaxol easier as the new list of side effects is a bit daunting again although I guess I should learn from the EC bit that I will not get all of them. On a dexamethasone high at the moment so feeling much brighter about the whole thing. I have been told I will get daily injections days 5-10 to reduce the risk of infections so hopefully will avoid the hospitilisation bit.

First step - how are you doing. Have you got help organised for after the op. It was not as bad as I expected but I did find it helpful to have someone for childcare for a week or ten days after.

Ned - goodluck for tomorrow - halfway is good although I know still feels a long way to go (To answer your school question form last week - (awol for a few days as had mild infection) my ds has been put onto school action, he has been put onto weekly 'anger management' sessions with the school inclusion officer and he has been told he can go to her at anytime if he is getting distressed (as is a large three class primary they are lucky enough to have a full time support person to help kids with difficulties), they have also started a school/homebook for him with the emphasis on the positive. He is under speech and language (dating back a while due to speech problems when he and his twin were little -very common on twins) and finally he is being referred to CAMHS. An all gun-blazing approach I think so hope it works. At least the school acknowledge that it is a recent problem and I hope by this it will be easier to get him back to normal. The Easter break will hopefully help as well.

Gig- my recommendation is try and find a new nanny but then all this chemo is making me stroppy!. You have friends and family for niceness but need a reliable person for a nanny - someone who cant lift big Gig and doesn't do babies does not seem to fit your families needs at the moment however nice she is. DId the drain do the trick with the wound recovery?

MAS - how are you doing. Our research group works on PD and is linked to some clinical trials. I have been told (I am not a medic) that the best care is given by neurologists who specialists In PD so hope your Mum is under one of these.

Waves to Kurri to and hope your feeling better too. I am competing for the largest post today. Whats the betting my internet connection will die now but I expect I have still missed a few so good vibes to you too and hope you have a good day.

Gigondas · 03/04/2012 07:11

Ned good luck with chemo. Going to read ones eight and other poSts.

MaryAnnSingleton · 03/04/2012 08:00

onein8 thanks for asking- my mum seems ok at the moment, I think the depression is the thing that seems most prominent- am not surprised that she is (depressed) as life must seem very limited. As a result she doesn't want to do much,and therefore it becomes harder to do anything,or to want to do anything. Vicious circle really. Dad is brilliant but it's hard for him as he is so vital and has so many interests,as well as being very physically fit.

We are expecting unknown cousins from NZ to visit for supper this evening -the son and his wife of my dad's aunt who died last year. We have never met them,so exciting to see new cousins. They seem to be alarmingly sporty-the kids ride and play hockey-they raise horses I think (the father) The aunts and uncles including my grandfather were all top sports women and men,playing rugby,tennis and cricket and hockey -one was an England hockey captain- weirdly this sporty bit has skipped me ! Dad and my brother sail,my brother runs and windsurfs...I used to be good at swimming and could do the 800 metres pretty well and loved netball,but that was years ago.
Anyway, no doubt mum will be dreading this as she always does,but am sure it'll be very nice.

Love to you ned - half way through is fab -you;re doing brilliantly.
Hope you got to sleep topsy

OP posts:
amberlight · 03/04/2012 08:22

Morning all! Brew for all of you with your doings today...

Ned, I got on better with Docetaxel than with FEC until the last dose (when I was just plain tired, really). So it's very variable. I found Docetaxel was a s*d for giving me big stomach upset problems and pain for a couple of days each cycle, and there was definitely some achiness, but I preferred it to the nausea on FEC.

Managed a whole 17 hr day yesterday co-organising a big conference in London (autism, ethics and the good life) and it felt like such a triumph to have the oomph to get back into things like that. OK, I was fast asleep on the train on the way home and nearly missed my stop Grin but wow.

Today, portacath flush, conversation with oncologist about whether we possibly risk herceptin again, given the heart thingy wasn't too horrible and my blood pressure is back down again...hmm....

graciesmall09 · 03/04/2012 09:45

Quick post as in work - Stupid comment award of the week goes to my deranged colleague.

Her: I'm so tired today wish I wasn't here.

Me: Sure don't we all.

Her: Well at least you are going to be getting a break. I will still be stuck here.

Oh right so it is preferable to having bc than actually doing a day's work. Shock

Can I ask how many of you had a Grade 3 tumour?

MaryAnnSingleton · 03/04/2012 10:19

she is certifiablegracie !

I think quite a few ladies were grade 3- smee and topsy I'm sure, also ned and quite possibly kk and also amber but don't let me speak for them.
amber is it really worth the risk to your present health to go again down the herceptin route ?

OP posts:
MaryAnnSingleton · 03/04/2012 10:21

btw- have meant to ask for a long time- my histology report says something about their being prominent retraction artefact - does anyone know what that means ?

OP posts:
Gigondas · 03/04/2012 10:22

She is a gem. Right up there with my ds pregnant colleague (dsis has mc so sensitive ) who was organising a team of colleagues to help her down stairs if there was a fire alarm.

I had grade 3 as I think did Smee and a couple of others- I think it's not uncommon in younger women. But it is just one factor in prognosis- type , spread , whether got out with margins etc all relevant so I wouldn't over refine on it.

My lovely mum got big gig so I can have a baby day.

One in eight- I am glad ds has help but sounds difficult.

How are the insomniacs?

Nanny texting asking how kids/I am... Might not be so happy when sees email I am doing about SSp later...