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

New thread !!

malteserzz Wed 02-Oct-13 07:57:03

Hugs all round to everyone it's all just pants isn't it hmmhmm

My tongue is nearly back to its normal colour I'm sure you all wanted to know that ! Am drinking a cappuccino which has cooled down which tastes ok so hopefully vile taste is going a bit

Good luck to foo foo with your chemo today and hope really is ok

PictureThis Wed 02-Oct-13 08:03:56

Morning all. Sorry to hear some of you are having a rubbish time. malt I'm on day 16 of T and my mouth is fine now. I did keep fresh pineapple in the fridge and ate some every day to help reduce sore mouth/tongue as well as gargling with diluted corsodyl mouthwash. My eyelashes on my lower lids have gone and are sparse on my upper lids so my eyes are dry/itchy then watery after rubbing them which gets a bit annoying. Other than that I haven't had too many side effects from this one. I'm waiting to see if the SE's are worse with my next dose as of course some of this dose went into my poor remaining boob and what a sorry state it's in. After burning like buggery for the last two weeks and looking a beatiful shade of scarlett, the said boob blistered over the weekend and is now peeling! I cannot bear any pressure on it so that makes life a little more tricky when holding a squirmy 13 month old. The chemo lot have been of very little help with regards of ehat is best for it. They prefer the 'have some hydrocortisone cream and it will eventually get better' approach.hmm. It might be alright by the end of chemo. To say I'm pissed off is an understatement.

DD had her temporary cast removed yesterday which in itself was an ordeal as her elbow has swollen to twice its usual size and the cast had to be broken around it in order to release her arm. By the end she was almost hysterical as it was so sore. She is now the owner of a high arm sling which appears to be doing as good a job as the cast at immobilising her arm, she's even managed to sleep all night. The only thing is her arm is now no longer protected from knocks and bumps so I've decided to keep her off school for the rest of the week.
DS is having his chickenpox vaccination today

MaryAnnSingleton Wed 02-Oct-13 08:14:41

oh grrr- just got a message on fb about putting a heart on your status for solidarity with all women who've had breast cancer -it said for 'woman only' which completely winds me up as much as anything -have responded accordingly.
Really want to speak to bcn but no reply - nothing really -just wanted to talk about things. This week another round of chemo starts-it just goes on. I should be happy that my treatment is working of course but it feels like a lonely road.
Sorry to be so self obsessed at the mo. Love to all....
Bake Off did cheer me hugely with the wonderful double entendres from Mel and Sue

MaryAnnSingleton Wed 02-Oct-13 08:15:13

oh poor dd's arm picture sad

MaryAnnSingleton Wed 02-Oct-13 08:16:25

trice - hugs from fellow capecitabine person xxx

trice Wed 02-Oct-13 08:54:33

Thanks for the kindness everybody. I am just feeling a bit ground down. The prospect of another three years of this followed by more tax if I am lucky and survive that long is not giving me a lot to look forward to.

Normally when I am feeling down I go for a walk or do some singing. I can't manage any of these things at the moment, my lungs are painful and I have really tender feet. I used to be quite annoyingly pollyannaish, but I am finding it hard to get in touch with the old me. Loath as I am to add to my pharmaceutical loading, I am tempted to get some ads from the gp. Bloody hate taking pills though.

malteserzz Wed 02-Oct-13 09:32:52

Picture your poor dd and your poor boob too. I take my hat of to you going through chemo with a 13 month old too that must be really demanding

Trice can you push to get your lung op earlier ? Really feel for you, I understand you don't want to take more tablets but ads might be a good idea.

Gigondas Wed 02-Oct-13 09:39:09

Morning all- am slowly reading through. Sorry for all those suffering and feeling blue. Hope dd arm Mends quickly picture but can see how awkward it is for you with 13 month old.

I will try and post some orange men to cheer people up later.

kitkat1967 Wed 02-Oct-13 09:42:31

Lots of hugs to Trice and MAS - sorry you are both having a rough time at the moment.

Busy morning for me already as I took DS to school as he wanted to do a before school club (he doesn't go to school locally and usually gets the bus) - it's the first time that I have been up to do that since diagnosis back in May shock.

Had a look at inflated boob today and it is huge!! I now have the all clear to wear bras other than sports bras so tried a few to see if I could get a more even shape and have decided on a very padded one as it lifts the other boob - feels like I have a massive chest but does look more even. hmm.
Was agony last night but is settling down now - thank goodness that was the last inflation.

Smee - did you have Rads at all? I only ask as my surgeon said last night that if I don't have Rads I can have an inplant reconstruction but the results are not good enough to offer that option after Rads. I have decided I def do not want my back muscle moved (due to a sport which I hope I will one day get back to) so an implant is one of the remaining options (and in fact the easiest). Ho hum - more to think about!!

Chemo is at 11am this morning.

BetsyBoop Wed 02-Oct-13 09:42:51

ouch picture for your DD and your boob.

malt glad to hear your mouth is a bit better.

MAS and trice I can only imagine how much "permanent" chemo grinds you down sad It's sh1t, but the alternative is even more sh1t sad sad

trice I agree with malt - your really need to push to get your op sooner. If you let yourself get more and more poorly it will make the op more tricky and your recovery longer. I know we all hate doing it, but time to get sharp elbows and push yourself up the queue a bit!

MaryAnnSingleton Wed 02-Oct-13 10:45:07

good luck with chemo today kitkat xx

longtimelurker62 Wed 02-Oct-13 10:46:19

What a horrid time so many of you are having ,and some ( TT ) not even posting sad .

This sounds really trivial but you never know it might help someone with a metal mouth - crystalised ginger is supposed to be good for kick starting saliva glands and I wonder if it might help a little ?

Wishing you all a better day and night .

malteserzz Wed 02-Oct-13 11:05:18

I will try that long time lurker thank you
Kitkat you will be having your chemo now hope it's going ok

smee Wed 02-Oct-13 11:06:43

kitkat, yes had epic no.of Rads, so 5 weeks worth due to extensive DCIS. Definitely that affected my skin, as it shrinks it. Hope chemo goes okay today and breast stops being so ouchy. xx

cake and thanks for Trice. Sorry you're having such a low. Must be bloody tough, though your idea of sticking a pin into JS made me smile. grin

MAS, is your BCN away maybe?? I think she's normally good at calling you back? Must feel very lonely being so permanently on chemo. (((hugs))) from me xx

foofoo has chemo today too I think. Hope it goes in quickly. Come back and let us distract you from icky side effects. smile

Malt, glad to hear tongue's normal! Keep gargling.. did help from memory. You have what two more cycles to go? So you only have to do this two more times. Hooray! smile

Blimey Picture, thought sounds very sore. Keep nagging them for help. You shouldn't be in pain like that. hmm

How's the ache's Betsy. One to go for you?? So very close.. smile

Ruby, I'll fight you for Kurri's toblerone. grin

Better go do some work. brew for all who want to distract me. I have jammie dodgers. smile

BetsyBoop Wed 02-Oct-13 11:18:43

Yes smee one more to go - 8 days time, I just want it all over now. Counting the days. Aches are all gone thank you. The aches don't seen to last with me, I know for some folks it can go on for months after. My body seems to do a "short sharp shock" response to chemo, awful at the time but as least it's over quickly grin

smee Wed 02-Oct-13 11:33:29

Have just read back my post, so many mistakes. blush

Betsy, finishing will be astounding. smile Have you Rads ahead?? Seriously a walk in the park after chemo, but still another thing to get through..

BetsyBoop Wed 02-Oct-13 11:54:36

Surgery next smee - early/mid Nov (still hoping they will let me have bmx - also with node clearance on rhs) Then rads, which I'm guessing won't be 'til after Christmas. And on it goes...

LadyBeagleEyes Wed 02-Oct-13 12:23:25

Hi folks, posted a few weeks ago after my diagnosis of metastatic breast cancer, where I now have nodules in my lungs and liver.
I've had one two round of capectibane tabs, I've just had blood tests and am back on the chemo today.
But my blood tests have shown excess calcium, I had an infusion in the hospital before my diagnosis and tomorrow I have to go to hospital for another one, my Dr said this may be monthly.
Has anyone else had this?

Shootingatpigeons Wed 02-Oct-13 12:36:40

I've only got 5% left on my ipad so this will have to be quick but just wanted to add more hugs for those finding it hard at the moment <3

ladybeagle Did you mean that there was too little Calcium, and so infusion of Calcium, or excess and having something infused to deal with that? I am on Calcium supplements because I have early signs of osteoporosis as result of chemo, early menopause etc. but I do remember Onc getting alarmed by sharp spike in my Calcium levels during chemo, in addition to low WBC count. it leaches your bones. They monitored it and reduced the dose (because WBC count life threatening mainly ) and it went back down so I don't know what they would have done if it continued.

MaryAnnSingleton Wed 02-Oct-13 12:41:33

ladybeagle I am on capecitabine (round 18 ?? anyway,a year's worth so far) and in the early rounds my blood test picked up low calcium - I topped up with cheese and yogurt and my dose was being altered anyway for hand and foot problems, so that might be the cause. A friend of mine with bone mets has excess calcium in her blood because of the cancer taking it from her bones (and this causes her pain) and is taking calcium supplements.

LadyBeagleEyes Wed 02-Oct-13 12:43:23

Excess, Shooting, Dr. says it's not uncommon.

MaryAnnSingleton Wed 02-Oct-13 12:44:52

I rang and left message on Monday and have emailed - other nice bcn rang to say that my bcn was away on Monday but in the rest of the week,although I know she is off on holiday tomorrow- so she's probably v busy..though she normally would feeling that perhaps I'm being too demanding or something. I just occasionally need a pep talk from her smile The others are v nice but we have a long understanding of my peculiarities and anxieties so I feel it's easier to talk to her and I don't need to explain my history etc.

smee Wed 02-Oct-13 13:01:52

Hope she rings today, MAS. I forgot to tell you, but my lovely BCN has left. Feel gutted even though I don't really need her atm.

LadyB, how did you find your first cycle? Hope not too many side effects.

MaryAnnSingleton Wed 02-Oct-13 14:18:40

I don't think she will and I don't want to ring again sad I guess I mustn't pin all my stuff on to her. Sorry that yours is leaving though smee - it's just comforting and reassuring to know that they're there.

MaryAnnSingleton Wed 02-Oct-13 14:23:53

well that'll teach me smee- just looked at my emails and there was one from bcn saying that my mails had got lost in her junk folder grin !

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