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(994 Posts)
MaryAnnSingleton Tue 01-Oct-13 08:24:02

New thread !!

Lilymaid Tue 01-Oct-13 17:04:38

Malt - having had 5 lots of Tax, I'm afraid that the metal mouth is unavoidable. I keep thinking of food I'd like to eat, but in reality nothing tastes very nice at the moment. And, Tax does not like hair!
What has so far annoyed me about the Breast Cancer month coverage is the emphasis that healthy eating/living will reduce the likelihood of getting it. Everyone I know who has it/has had it has been very fit and eats healthily. I don't like the hidden implication that those who have breast cancer have some way contributed to getting it!

kitkat1967 Tue 01-Oct-13 17:13:07

Lily - yes I read an article today that said once we understand the effects of diet, alcohol, smoking and exercise less women will get BC - well fab news for non-smoking, non-drinking, not over-weight, reasonably fit ladies like me. I am fed up with the implication that I could have prevented this had been 'more aware of my lifestyle'.

Malt - it is the Taxel family so same SEs as you, Betsy and Lily but hopefully much less severe. I have been warned that by the end of the course they will have built up but hope that until then I will not be too affected. I think the idea is you are never wiped out but on the flip side you get no weeks of no affect - so more a continuous low level niggle maybe - I will of course be keeping you posted grin.

malteserzz Tue 01-Oct-13 18:18:51

Lily how long does the metal mouth last don't say all the way through the cycle hmm just forced down a bowl of cereal for tea. Thought it might be better once I get rid of the thrush ?
Kitkat hopefully you won't get too many side effects I will keep my fingers crossed

Dh gone to football I told him to go but I wanted him to say he wouldn't really. It's a long lonely day sometimes hmm

KurriKurri Tue 01-Oct-13 18:26:29

Malt I always felt the metal mouth was at its worse when my WBC count was at its lowest (that's just what I felt from my own experience - may be wrong! But I base it on the fact that it was at its very worse when I had neutropenia and I simply couldn't eat because the taste was so vile, and it improved slightly when my blood count improved) but I didn't actually get rid of it completely until I finished chemo (sorry - maybe not what you wanted to hear).

It comes with lots of types of chemo I think - not just tax (I didn't have tax) it is foul - much sympathy. I don't know what you can do to alleviate it, - I think as you say some foods are worse than others, I found cold drinks better than hot, and I found sorbet was edible (maybe because it is cold and sharp tasting)

smee Tue 01-Oct-13 18:52:24

That mouth thing is horrid. I think I hated that the most too. Even water tastes wrong. Keep ticking off the days. Soon be over. xx

Shootingatpigeons Tue 01-Oct-13 19:20:32

I had mouth thing too, and even the side effect that everything I eat whilst my taste was derailed I went off eating even when it was back to normal, which meant what I could face got more and more limited.

Yes the implication that we could have avoided Breast Cancer by eating the right things, exercising, not drinking, having babies early etc. is very annoying and there is only a grain of truth to it. As my Onc said to all of us, so you did all the right things just like all the women I see (I may have lied underplayed my alcohol intake). As she said the chances are that the as yet unknown hormonal and genetic risk factors are far more likely to have played a role in our risk. Known risk factors, including the above, only account for 95% of risk and most of that is the known genetic risk. She is quite sure that increased exposure to hormones in drugs and from the environment and a genetic predisposition to develop Cancer as a result is every bit as much to blame as lifestyle factors because the women she mostly sees do do all the right things. Men are getting hormonal Cancers too but no one is implying they are bringing it on themselves.....

GoodbyeRubyTuesday Tue 01-Oct-13 19:29:00

Thank you all for being so lovely smile my flatmates are okay but not particularly sociable, it has taken me two days to meet all of them, in fact I think there is still one left to meet! I baked a chocolate cake to share thinking we'd all socialise on our first day but after 24 hours and only having met one person I just left it out on the side with a note. Plenty has gone so either I have one very greedy flatmate or they are just using the kitchen when I'm not around smile they are all postgrads so it's rather different for when I was last in halls in first year and everyone desperately wanted to make friends! grin it's freshers' week this week but lectures start next week so hopefully I will make friends on my course.

shooting unfortunately everyone else graduated last year as they didn't do the placement year!

kurri I think you hit the nail on the head, I just don't have confidence about doing basic things. It takes me ages to get ready to go out as I'm worried I'll forget something and then I'm worried I'll be late so I set off really early. It's not so much that the treatment has ended, just that in all my planning and thinking about the future I hadn't really considered the fact I'd have to leave home again blushblush

I had another good day though, I went to a meditation class and it was really nice!

malt the mouth thing is horrid. I found spicy food was the best, and salt and vinegar.

I think all the stuff about lifestyle advice to avoid cancer, and other illnesses, is that people find it so scary. They want there to be a reason why someone got it and why they won't get it. It may play a part but it's certainly not the whole picture! It's just a way of trying to make sense of something senseless I suppose.

amber shock about other ship. Thank goodness no one was hurt! Good news about the drug too, but aren't you meant to be relaxing?! smile

smee well done on your prize!

topsy and gigs I hope you feel better soon xx

kitkat good luck for tomorrow smile flowers

I hope really's surgery went well flowersflowersflowers

This post is getting long so I will leave it there. Love to you all though, I nearly cried again reading all your lovely kind messages of support, you are all fabulous smile x

PS chocolate cake for the trolley!

Lilymaid Tue 01-Oct-13 19:36:59

Malt It is day 13 of my chemo cycle and my mouth is still very metallic. I keep thinking of food I would like to eat but everything tastes of nothing! End of cycle is better but the metal mouth comes back as soon as the chemo goes in.
I had thrush first cycle but not since then. Do you take an antifungal such as Fluconazole?

foofooyeah Tue 01-Oct-13 20:10:14

Just marking my place, Can't type too much more due to excessive red wine intake.

Chemo #2 tomorrow

Love to all

kitkat1967 Tue 01-Oct-13 20:30:59

Ruby - I think that is a very valid point you make about people being keen to say there are reasons that certain people get cancer as it makes them feel safe. I had never thought of it like that before - you are very wise for one so young wink grin.
Are you in the final year of your course then? And I apologise for not knowing this but did you have to drop out part way through last year?

kitkat1967 Tue 01-Oct-13 20:47:59

Forgot to say that i have just returned from final 'expansion' and am very 'over expanded' (apparently that gets the best results in the reconstruction - so now need a bit of padding for the other boob (who'd have thought it!!). Also feels quite stingy this time.

MaryAnnSingleton Tue 01-Oct-13 21:23:20

yes,very good point there ruby - sending you some toblerone and a comforting hug.

BetsyBoop Tue 01-Oct-13 22:08:56

malt my funny mouth/tastebuds usually lasts until the weekend and then eases off and I can drink tea and water again! Hope your thrush clears up soon, that's at least one thing I've avoided so far!

The tax has been quite hard on what was left of my hair - my eyebrows and lashes thinned slightly on FEC, two rounds of tax and they are all but gone sad I've now got really watery eyes, which I'm guessing is due to no eyelashes...

kitkat and foofoo hope all goes well tomorrow.

amber I'm loving all the holiday pics on FB smile and I'm not the slightest bit jealous, oh no!

gigs hope you manage to sleep without rolling on your bad arm tonight

I'm doing "la la la not listening" with all the BC stories on the news too...

GoodbyeRubyTuesday Tue 01-Oct-13 22:48:36

Why thank you kitkat wink I'm in my final year, I was on a placement year last year, working in the civil service, but had to take most of the year off sick! Sorry you're not comfy, it does sound rather owchy. Will it be the same size when it's finished or do they just need to make extra space for the surgery if that makes sense? I suppose if they didn't put anything in the other side they might, ahem, age unevenly smile

kurri you asked what us young(er) people do... I spent the evening watching Private Practice and crocheting, and was counting down the minutes to 9 o'clock when it felt reasonable to put my pyjamas on! grin I'm having a wild night here!! wink

MAS I looooove Toblerone. And hugs are always gratefully received. I shall give you one of my closely guarded chocolate orange Segsations in return. I brought your joke book with me as it's a good way to cheer myself up if I'm having a wobble! It helped me through some of the worst days of chemo smile I love silly jokes but I think my family might be getting a bit fed up... grin I'm very impressed with all your swimming updates!

trice Tue 01-Oct-13 22:54:19

I will have to have the radio switched off for October. It's good if they raise some decent research money though.

Betsy, the drippy eyes are annoying aren't they? You will grow everything back soon though.

Malt, hope the metal mouth calms down a bit. I found tinned fruit straight from the fridge quite pleasant. Cold soft and sweet.

I am just coming up to six months on capecitabene. I cried in Asda yesterday because I feel so poorly. Then I cried on Dh, secretly wept while cuddling the dcs and howled into the broccoli while cooking tea.

JS can run away if she sees me coming. I will stick the pin of my cancer "badge" in her arm, because I just love the attention.

GoodbyeRubyTuesday Tue 01-Oct-13 22:55:09

betsy I'm sorry you're having such a tough time with side effects. Are your eyes sore too? I didn't lose my eyelashes but my eyes were sore and blurry and felt dry but water constantly confused I used the tired eyes drops from Boots (because they were the cheapest and they all seem to have the same ingredients!) but apparently the oncologists can prescribe better ones smile

kitkat1967 Tue 01-Oct-13 23:05:18

Ruby - apparently over expansion now means they can create a more natural shape later (by that I mean droop!!). And yes he will need to do something to the other side if I want a good match - and I did indeed ask again about that and he has promised to do a lift (and previously he mentioned an implant as well) - he did ask which insurance company it was which concerned me but he seemed content with the answer.

Trice - sorry you are feeling so down today - is 6 months significant - do you need to stop or is it just bringing it all home (so to speak)?

GoodbyeRubyTuesday Tue 01-Oct-13 23:05:49

Oh trice very big hugs and cake and wine and flowers for you! sad is it specific side effects or just generally feeling rubbish?

KurriKurri Tue 01-Oct-13 23:06:16

Ah - I must be technically 'young' too then Ruby - I watched Bake Off and did my knitting grin

Maybe your flatmates will loosen up and be a bit friendlier soon - I'm sure they liked your cake smile

My DD found that she didn't have much in common with her flatmates when she was in first year (I know you aren't in first year)but once she got to know people on her course she could ask them back to hers, or go round to their places, and I'm sure you will settle in once the course gets going properly.

Your confidence will come back as you get used to being away from home again, it feels like a bit of an uphill struggle to regain independence, -illness, hospital and treatment does that to you, takes away your control over your life and makes you uncertain - but a few little steps each day and you'll soon feel like your old self smile

Post on here when you have a wobble and we will give you a virtual cuddle. xx

Good luck to all having treatment tomorrow.

KurriKurri Tue 01-Oct-13 23:09:02

trice - hugs to you too, sorry you are feeling low sad

Shootingatpigeons Wed 02-Oct-13 01:22:26

I'm another "young" one, still up because I am knitting a new fair isle and suffering from "one more row" syndrome. Just had to force myself to put it down . Hard core, knitting doesn't get tougher than this grin

BetsyBoop Wed 02-Oct-13 05:47:09

trice big unmumsnetly hug from me and cake wine brew

ruby yes my eyes ave been a bit sore since starting tax so I've been using artificial tears, will ask the onc for some better ones thanks for the tip.

kitkat hope your pump up hasn't been too ouchy.

Woke at 04:58 this morning, starting to annoy me now, I wake between 04:50 - 05:10 every flippin' day...

foofooyeah Wed 02-Oct-13 05:52:23

What a horrible tough time so many of you are having. I bloody hate this disease. Everyone in this group is so intelligent and individual you cannot make generalisations about this disease so the stuff about diet etc is so annoying.

Wish there was more effort in curing ALL cancer and not the segmented sparkly stuff. Why should be have to raise money anyway? It's a basic human need to be rid of this horrible disease.

Right, time for a cuppa, I don't knit or crochet or bake or anything useful (all of which I wish I could) so I shall go and paint something.

foofooyeah Wed 02-Oct-13 05:53:11

Oh morning betsy another habitual early bird here

notJenkins Wed 02-Oct-13 06:30:35

Good morning from me another early waker here have been up for ages.

I have a cold and sore throat so feeling sorry for myself. Getting impatient as I want to be back to normal but my muscles are not playing ball. Supposed to be doing a decent dog walk today with my aunt but may have to do an old lady one instead. At least she will make me a nice coffee after.

Still waiting on the mortgage this is getting ridiculous now. I am resigned to waiting ages now. Very frustrating as I want to move ASAP especially as if I need more treatment I want to be settled into the new house before I feel bad again. Aaaaaarrrrrrggggggghhhhhhh. I feel like nothing is ever going to go right for us.

To try to be positive the dogs are now allowed on the whole beach so when my muscles are ok I can do some long beach walks again so be prepared to be bored of dog / beach pictures aplenty on fb. My giant hooligan puppy is now less of a hooligan and does not assault people with such regularity or enthusiasm any more so I can take him out after 6am grin

Hope you all have a good day. amber am loving the cruise updates and ruby I am sure you will settle once you make some friends and are in the swing of study again.

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