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Original poster

**T*A*M*O*X*I*F*E*N 11 **

976 replies

MaryAnnSingleton · 27/06/2011 10:25

new thread here !

OP posts:
cakesandale · 04/07/2011 13:17

Topsy. I am devastated for you too.

Let us know what they have said, when you can. I know that it may be a bit of a while before you feel up to it.

I will stay about and am here to say or do anything that may be of help. I hope you have someone with you. Don't feel you have to bottle it all up.

amberlight · 04/07/2011 13:25

Topsy, bum and double bum. Make that a triple. Soddit.
Get them to talk to you about Cyberknife radiotherapy. It can zap the little sod(s) to hell in a good number of cases.
Have Brew or Wine and a very large hug (of suitable safe sort)

amberlight · 04/07/2011 13:29

Three year survival rate 80% with cyberknife. There aren't longer term statistics given as it's a new technology. I'm not a doctor but that's the best info out there as far as I can see.

cakesandale · 04/07/2011 13:31

Good advice from amber. I knew someone would be along who was of some practical use.

KurriKurri · 04/07/2011 13:58

Oh topsy Sad shit shit shit. Also here for you if you need me. Am devastated for you. Good advice from Amber, also worth asking about high dose vitamin D3.

Don't know what to say that's useful, we're here for you, you know that yes? xxxx

SparkleRainbow · 04/07/2011 14:07

Oh Topsy Sad I am sending you big hugs, that is devastating news. Amber's advice sounds very good. I am here for you too. Sad

Blardy disease Sad

pinkstarlight · 04/07/2011 14:16

topsy... omg im so sorry,this blasted disease im truly gutted to hear your news.remember we are all here for when your ready to talk.

didnt mean to worry anyone had internet problems turned out i needed a new home hub,grrr bt.

finally had chemo friday after a delay of 2 weeks but at a much lower dose. my consultant was on holiday so had to see a different one talk about put me on a downer he was furious that they changed from fec to tax when i had been doing so well.was talk of abandoning my last chemo and opting for early surgery then going back for 2 more sessions of fec.in other words i have no idea whats happening .

not feeling to bad at the moment my hands ,elbows and especially my feet are in a real mess with the peeling.last time after tax i felt alright for a few days then the bone pains kicked in around day 5 so as yet not sure how i going to react but at least i have bucket loads of medication to get me through.

SparkleRainbow · 04/07/2011 14:21

Pink it is good to hear from you. You must feel pretty muddled about what is going on, with your consultants having different opinions as to what to do when. Is it worth preempting the bone pain with some pain meds or is that not advised?

Topsy, thinking of you. x

cakesandale · 04/07/2011 14:21

Hi pink - how confusing. I must say, it does seem a shame to move you to a drug that is so much harder to bear. I don't know what the rationale for that is - I was just FEC all the way through, and I also found that manageable.

Don't talk to me about IT, I will have the vapours, as my issues there are STILL unresolved despite much time wasted and cash spent - but i am glad to hear your problems were IT and not so much health-related.

KurriKurri · 04/07/2011 14:39

topsy my love, get someone to ring your GP for you if you think you might want something to help you through the next few days when you'll be feeling very shocked. They can give you something to help you sleep and to help you during the day, no need to go in they'll do it over the phone.

I hope you have someone with you now for support, also your BCN will be there to support you if you need her.

xxxx

pinkstarlight · 04/07/2011 14:41

sparkles..they have given me co-dyramol for the bone pain so least im prepared this time.

cakes.. it was clear that different consultants have different ideas for treatments,its not something i wanted to hear.i guess i just have to go with the flow of what happens next.

got my son off school as hes had a bug over the last the weekend,just to prove hes feeling better hes just come down stairs and rewarded me with a micheal jackson dance.back to school tomorrow.

KurriKurri · 04/07/2011 14:43

Pink I hope you feel better this time round, but annoying that you are getting different messages about your treatment. lovely to see you back Smile

cakesandale · 04/07/2011 14:45

The little monkey Grin School tomorrow indeed!

I wouldn't want to hear about a difference of opinion either - I'd prefer it all to be very clear cut that I was getting the Right Thing. Here's to less bone pain this time around.

smee · 04/07/2011 15:25

Topsy, I am devastated for you too. I really don't know what to say. Bastard cancer. But Amber's right to mention the cyber knife and you're at the top place in N.Ireland, so you'll get the very best of treatment. Bloody hell though... Am sending a useless but heartfelt hug. xxx

Pink, glad you're back. Glad too that it was mostly internet trauma which kept you away. Must be unsettling to not quite know what's next, but your Consultant sounds on the case.

Original poster
MaryAnnSingleton · 04/07/2011 18:14

oh God- my heart has just plummetted topsy-have only just got in and cakes alerted me to the thread - I can't think what to say except that we're here for you and I'm sending you a ton of love

pink - so lovely to see you-am glad it was just techno stuff keeping you from us x

OP posts:
SparkleRainbow · 04/07/2011 18:42

Got to go and sign off for the night now, but didn't want to go without sending big hugs and love to topsy. xx

pinkstarlight · 04/07/2011 20:55

thanks for the welcome back,im fine apart from foggy brain starting to set in.

topsy...for what its worth i said a prayer for you,just wanted to let you know in thinking of you.

amberlight · 04/07/2011 21:17

Topsy, good plan by Pink. If you want me to hit the prayer chains with an anonymised request for prayer, very happy to do so for you...and for anyone else too...

Original poster
MaryAnnSingleton · 04/07/2011 22:37

am off to bed shortly - have been thinking of you topsy - hope you manage to get some sleep. Will try to do a loving kindness meditation for you (I say try because I'm not very good at them ) xxx

OP posts:
KurriKurri · 04/07/2011 22:48

Also off to bed soon, and I will be out tomorrow until the evening (DD and I are going to Cambridge for the day).

Dearest topsy, I am holding you in my thoughts, holding hands across the water. xxxx

cakesandale · 05/07/2011 09:22

Good morning everyone.

I disappeared last night owing to a totally unimportant domestic 'crisis' but just wanted to say that i am here and ready to talk if it helps this morning, Topsy. Lots of the others aren't around much until a bit later on, most days.

I hope you had a reasonable night. There is so much love and concern on here for you, and in RL too, I know.

I also said a prayer and will light a candle. x

smee · 05/07/2011 10:03

Good morning. Feel very much the need to be here somehow. Can't stop thinking about you Topsy. I can't offer prayers, as I don't do those, but I can be furious for you and sad and as here as is virtually possible. Talk to us all if you can. And I really hope those doctors have some fantastic ideas in terms of treatment tomorrow. xx

Nowt to tell here. Have just carried a large ladder through the streets to lend to a neighbour and nearly decapitated the same traffic warden who I splatted last week mid water fight. Blush

Original poster
MaryAnnSingleton · 05/07/2011 10:11

same here topsy- I woke up thinking of you.

smee- traffic wardens beware ! he'll think you're out to get him.
On a frivolous note-ds sang well at his recital -small video on my fb page- his voice is so much lower,think he is finding his way around it. He chose a very short piece -the shortest in his exam I think !

OP posts:
pinkstarlight · 05/07/2011 10:38

im also thinking about topsy and wanted to pop on and send her some hugs.

son is now back at school he was a bit wary because hes had a falling out with a friend,but his friend called for him this morning with a group of their friends and they all rode off happily like the et gang.

my daughter has just moved in to her new uni digs at the weekend,feeling guilty because i should have been there helping her but shes fine and got lots of help.its a house of 6 girls so sounds like she will have alot of fun next year.

my 15 year old is doing her work experience this week came over all emotional because shes growing up,got a stern warning"dont you dare cry"lol.the people shes working with are so lovely and really going out of their way to include her.

im halfway painting my shed saffron and reflecting back,what i would give for my kids to be babies again oh why do they have to grow up lol.

topsyturner · 05/07/2011 10:38

Am in Macmillan center .
Had echocardiogram this morning and I have just been injected with isotopes for my bone scan . Don't have to be back there till 12.30 for scan .
Macmillan people are going to fill in my forms for financial aid .

I phoned my gp yesterday and they gave me a script for anti ds and sleeping tabs .
Started the anti ds last night . They will take a couple of weeks to kick in though .
Didn't have a sleeping tablet last night as I was worried I wouldn't wake up early enough for my appointments .

Start chemo tomorrow at 2pm .
They are going to give me fec for 3 sessions and then redo the ct and see what difference it has made .

I am so down today .