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(997 Posts)
MaryAnnSingleton Tue 19-Feb-13 14:04:26

new thread - bring the trolley over here....

Gigondas Fri 29-Mar-13 11:36:45

Yes plenty of room here- I have a lot of wine and chocolate digestives for those that are keen. I better not raid big gigs pombears as that will be child cruelty.

Is there anything good on tv this weekend aside from the labyrinth adaptation?

KurriKurri Fri 29-Mar-13 11:37:39

Waves to Gigs - sounds like a day of taking it easy and getting your body back in synch is in order <makes more tea grin> Hope the little Gigs have fun at the park - it is a niceish day here too, cold but sunny.

Ginger - they don't give you long to make your decision, but don't feel pressured into anything, you are completely within your rights to ask for a little more time if you want it. Sometimes they make you feel as if it is something you 'ought' to do, but that is nonsense, you are getting through your own illness and treatment, - you aren't guinea pig, so you do what feels right for you.
Amber is great with sciency info. - so hopefully she can explain it all for you, I don't really know anything about the drug you are being offered, but I do know that all the time cancer drugs are becoming more targetted and precise, and that can only be a good thing in terms of effectiveness of treatment and reducing side effects.

And remember chemo affects good cells as well as cancer cells, that is just one of those things with cancer treatment, - but the good cells will grow back, and cancery ones will be zapped. I found this avastin website which looks reasonably sensible. there is quite a good video which explains how avastin works (when you click you get a 'choice of cancers' list hmm and Ha!<they seem to have left 'no cancer at all thanks' off the list> but I think whatever you click on you get the same video
It does list a raft of side effects, but not everyone will get all those, if you feel it is making you feel too ill you can stop the trial any time, and many of those side effects are ones you get anyway with chemo (yes they sound vile, but you don't usually get them all, or all at once, and they can always give you something to help with them)

Grr at your brother - sounds as if he needs a kick in the pants to help him understand that you need loads of support atm, not unhelpful buggers.

Smee - beigals and bucks fizz sounds lovely, I will save you a bun grin.

I have just asked Dh what days he has off over Easter, to which he replied 'I've got today and Easter Monday, but I think I will take Shrove Tuesday off as well' hmmgringrin <sigh>

KurriKurri Fri 29-Mar-13 11:40:03

Waves to topsy, - what wool are yo going to get, what is the next project?

I have finished the bag and purse I've made for DDIL, am also making her some moccasin slippers, - will get DH to take a photo and put it on my profile later.

gingeroots Fri 29-Mar-13 11:53:29

Pen - if any help I have found absolutely the best cream for cracked heels is Flexitol .

I don't know if it would be too strong for hands ? Surely not ?

It comes in different types - one I think for general moisturising and one specifically for cracked heels .

I use it on my 93 year old mothers feet with no trouble and her skin is very dry and very prone to react to stuff .

topsyturner Fri 29-Mar-13 11:55:57

It's easter weekend , surely there should be an 8 hour marathon of Ben Hur on somewhere Gigs ?

Am crocheting DS a blanky kk
Pics on Facebook of its start , grey , red and mossy green creation .
Was just practicing crochet technique using left ovef wool and it morphed into a blanky . So I need to nip to the wool shop and hope they still stock the colours I need !

topsyturner Fri 29-Mar-13 11:57:03

Flexitol ?
Must get some of that for DH , thanks for the tip Ginger smile

graciesmall09 Fri 29-Mar-13 12:00:20

Aw gingeroots sorry you have had to join here. It is difficult to cope with at first but good to get things moving quickly in my opinion. I hope you can get your mum's care sorted easily. Can you get any help from social services? No advice on trial as I wasn't offered one.

gigs hope you get your sleep/drugs cycle sorted soon but a day lounging around won't do you any harm at all.

kurri glad little old lady dog a little brighter.

jchoc that sounds pretty miserable. Hope your drugs kick in quickly.

pen hope your hands don't split as that sounds sore. Could you slather (is that a word??) them in something like Diprobase at night and wear cotton gloves overnight. Not the most attractive thing to do but I used to do that when my eczema was particularly bad and is did soothe it.

I was looking forward to a lie in this morning however my mum insists on phoning me every morning so wakened us all up by the phone ringing at 8.55 am. Still haven't managed to get dressed though grin

PenPerson Fri 29-Mar-13 12:44:59

I have flexitol for feet and loads of Aveeno for dry skin ( allergic eczema family here ) and have requested some more Aveeno now I get free prescriptions.
I was alarmed last night as all the little cracks in my scaly hands came up all red and looked like mosaic or blood vessels. It has calmed down today just left with scaly snake skin looking hands, this cancer lark is so glamorous.
kk thanks that is reassuring to know is is common when hypothyroid. I was told 'you may feel a bit tired' as the only clue to symptoms so they have all been a bit of a shock. I wish they had prepared me better.
On a hunt for mini eggs today as I want to make some chocolate cornflake cakes with them on but tesco had sold out. Like like I have to go to Waitrose then. What a drag.
I am also making a proper rice pudding today with my bargain whole organic milk from Waitrose. I fear no one else will eat it so it will be all for me. Damn.
Off to look at your FB piccies topsy !

KurriKurri Fri 29-Mar-13 13:07:45

Pen -google hypothyroid - there are loads of symptoms, - struggling to concentrate, feeling depressed etc. - which make you feel horrid, but if you know it is the hypothyroid doing it, it helps because you don't feel as if you are going bonkers!

Talking of mini eggs, DH picked up a sainsbury's magazine yesterday, and there is a recipe for easter Rocky roads. You mix together broken digestives, melted white chocolate, mini marshmallows and mini eggs, then put it in a tin to set (obviously this recipe is very suitable for those of us who want to shift a few pounds, so I thought I'd share grin )

PenPerson Fri 29-Mar-13 14:04:01

I think I had all the symptoms, every single bastard one !

No mini eggs in Waitrose either. I had to resort to smartie eggs. Not quite the same but I am sure the dc will cope.

Copthallresident Fri 29-Mar-13 14:10:15

gigs Just saw your pictures of the little gigs on fb, so gorgeous, and on those swings I used to take the little copts to too <wipes something from eye, must be a spec of dirt and refrains from launching into seems like yesterday cliches > Cancer does muck up your time clock, I despair of ever getting mine back. I am off to that park with goondog now, I love walking around Hampton Court in the sun. I am sure there must be lots of sagas on TV today for a lazy lounging day.

pen sounds tough, but not the Cancer, you have got rid of that, just a thyroid that needs a bit of fine tuning?

jchoc that is tough, my annual periods on Tamoxifen were shockers. Can they not fine tune that too. Seem to have passed shocker periods on to the little Copts and both find the tacaemic (sorry can't remember exact word ) acid helps. Worry it is same gene as caused the bugger but my attempts to reduce their risk through diet etc have limited appeal / success sad

Waves and sending Happy Easter wishes to everyone

<goes back to vane search for Easter decorations I put somewhere I could easily find them>

amberlight Fri 29-Mar-13 14:10:46

Hi Ginger
Argh and drat re diagnosis and all that goes with it. At least here we have all been there in various ways and know what sort of argh it is.
I am not a doctor. My advice is entirely personal and you should take no notice of it. But I'd say go for the trial. AOG can sometimes be a trickier rude one, though much depends on whether you have a Type 1 or Type 2. Many have an 80% success rate over 3 years now (can't predict more than 3 years ahead, as the treatments are too new) . That success rate does seem to happen with the niftier stuff now available, but they'll want to see how the chemo attacks it...then tailor it from there.
Epirubicin, Cisplatin, Xeloda are the three chemo thingies for it. I've had Epirubicin for breast cancer (along with two others). It makes your wee go pink for a day.
And yes, some of the newer drugs target just the cancer, which is rather clever. And more effective.
Your name is well chosen, as I'd strongly recommend taking ginger supplements for three days before chemo. Helps many people with any nausea. So do the drugs from the docs.
Have a brew and ask anything.

Copthallresident Fri 29-Mar-13 14:15:50

And welcome ginger roots to our exclusive club, the one you don't want to join and can never really leave but as you can see we laugh as well as cry, and it is perfectly possible to get on with life, and even be quite boring grin. I don't know anything about your trial drugs but echo what everyone else has said about being on a trial making you a focus of attention, and extra support is always useful.

AshokanFarewell Fri 29-Mar-13 15:14:30

Hello all,

Just seen the photo of little gigs at the park - they are super cute! smile

ginger sorry you've got a diagnosis but at least you've also got a treatment plan. I was offered a trial (SCOT I think) but that was to have four cycles of chemo instead of eight. I decided against it as I wanted to feel I had done everything I could possibly have done to ensure the cancer doesn't come back. If they'd offered me more drugs I probably would've taken them, for the same reason. I'm in a lucky position though as I'm now single and I don't have any children or dependants so I'm back home with my parents to care for me if anything goes wrong, so I didn't really have to take side effects into consideration too much.

I'm taking Xeloda (capecitabine) and I'm on my third cycle. It took a bit of tweaking to get the right dose and at the moment I'm having just the tablets, but I'm meant to be having an infusion of oxiplatin too. My main side effect is nausea. I've got various anti sickness medications though. I have found it helps to take my evening dose just before bed so that I sleep through the worst of that, and my other dose mid morning, they're meant to be taken about 12 ours apart.

Hope everyone is having a good Good Friday. We've been shopping for paint for my room at parents' house grin

amberlight Fri 29-Mar-13 16:09:43

Top tips from the science teams doing the research:
Bedroom at night - darker than the insides of a coal miner's trousers.
Take Vitamin D supplement
Take curcumin supplement
Take lactoferrin supplement
Take omega 3 oil supplement
Have a huge network of lovely cheery people around you. Hug them, lean on them, see them often. It boosts oxytocin chemicals in the body, which boost the immune system in turn. Halves the likelihood of copping it (weirdly).
Treat it as a minor nuisance and carry on regardless. That's the only attitude that seems to make a difference to outcome. "Soldiering on bravely through the battle" doesn't. So if you can figure out the difference between those two, pick the first one. Not that it'll feel much like a minor nuisance at times hmm < understatement alert >
...and of course check with your teams before taking supplements as I am not a doctor. I just research medical things and notice the whacking great big difference to outcome from taking that stuff. (For many people).

Gigondas Fri 29-Mar-13 16:11:47

Isn't the place you can never leave hotel California copthall ? Or am I getting cancer induced soft rock visions again.
What colour did you go for ash?

Had lovely nap so may venture downstairs now as little gigs are back from poundland ( this s a real treat for them).

gingeroots Fri 29-Mar-13 17:40:04

Thank you so much everyone for posting .

Amber thank you ,I'm not quite sure what you mean by this bit
AOG can sometimes be a trickier rude one, though much depends on whether you have a Type 1 or Type 2 blush blush

is it adenocarcinoma of gullet ? ( the use of gullet makes me smile ,so much easier to spell than oesphageous ...or is it a more technical use ? )

I've been told it's T2N1M0 ( which I've googled ) but there is some confusion over my results which I'm hoping will be cleared up at next visit .And which I think I'd have heard about by now if there were some significant error .

I think with the trial I'm a bit worried about the effect an extra drug will have on my general health . It's such a big operation that I feel I want to be as strong as possible .

And I'm worried about the possibility of actually vomiting with the chemo because my gullet is restricted and I choke with food going down ,I'm scared how it will be with food coming up . Though I guess there's more force to propel it going up as opposed to down .

Or is it mainly nausea ?

Sorry to be so obsessed only with myself - I hope to expand my world view soon ...

amberlight Fri 29-Mar-13 17:53:19

AOG is Adenocarcinoma of the Oesophageal Gastric junction.
T is type, N is number of lymph nodes that are affected as well, M is whether it's snuck out into any other places (metastases).
That's a pretty good set of results thus far. T2 is a faster sort of cancer, but faster ones can be whacked harder by the new drugs (they grow faster, therefore get greedy with their food supplies, therefore 'eat' more cancer killing stuff, therefore die off). N1 is minor. M0 is excellent.

The antisickness stuff now is powerful. If tablets don't do it, they can give you a driver which delivers a constant dose of it. A few here had that. Actually throwing up is something they try to avoid with all of us.
Do not worry at all about being focused on you. Have a brew

NedSchneebly Fri 29-Mar-13 17:53:50

Busy day here - out if hours doc for DS this morning, for more antibiotics and steroids for rotten chest infection, poor lad. Had to walk past the stairs to the chemo Unit. felt a bit weird. . .

Helped out with church kids activities this pm - 43 kids from aged 2 to 12, making hot cross buns, Easter biscuits and crafty stuff like decorating palm crosses. Manic!

ginger I wasn't offered a trial, but don't be pressured into anything if you don't feel comfortable. Hang around here though - its the exclusive club no one really wants to join but we have experienced most things between us.

jchoc hope meds kicked in and you're feeling better.

kurri hope old lady dog ok. And you too, obviously!

mas bet you look lovely and glamorous in your new clothes. Lots of hugs x x

gig how you doing? Been thinking of you lots and lots x x x

smee hope you are allowing yourself some time off over Easter? Bet DS is excited about hols.

pen definitely must make a lunch date after holidays. Thinking of you lots x

topsy very jealous of your crotcheting skills. Very nearly bought a crotcheting magazine in tesco today. . .

Waves to amber, Copt, ashokan, Gracie and anyone else around. Lots of luffly love to you all x x x

jchocchip Fri 29-Mar-13 18:07:32

Lots of easter bunny love to you all smile grin wink shock shock hmm confused Am I being childish? blush

MaryAnnSingleton Fri 29-Mar-13 18:37:00

new thread alert !!! here

Sparklerainbow1 Thu 15-Mar-18 20:27:50

Hi Guys, long time since I was here, most of you will not know who I am, but some may recognise the name for many years ago. I just wanted to touch base with a group which has meant a lot to me over the years.

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