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Starting Chemo in December.2012

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Re: Starting Chemo in December.

Just out of interest does anyone keep having a tender scalp , twice now it feels like it's sunburnt but no redness and not really been in sun as cant due to not being able to put sun cream on rads bit , didnt know if it just was the new hair growing through , it feels like when our hair shed just after the dreaded chemo , yikes!!! Xxx
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Re: Starting Chemo in December.

I missed the r off , ha ha , brain still doesn't function as it should x
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Re: Starting Chemo in December.

Thanks borde , I'll have a look on trusty amazon and give it a try xxx
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Re: Starting Chemo in December.

Sorry Maire, Glasgow trains do go direct to MK, but completely understand. I thought you might be off till September? I just thought I would propose something before we all drifted off. How many Herceptin left? Time for a blood transfusion?
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Re: Starting Chemo in December.

Have a good meet up folks. Just a bit too far for me.......and I'll be back at work after the summer holidays then.
Bit jealous really.
Update on hair-have now done another naturtint. Not purple this time and worked quite well really however hair is growing in quite springy (not chemo curls just my hair I suppose)-the words 'burst couch' spring to mind. Just picture Jim carrey as The Riddler and you'll get the idea.
Another blood test tomorrow. Blinking wbc is low and red is dropping. Hoping it's just the Herceptin-getting dose number 10 on Friday!

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Re: Starting Chemo in December.

I propose we try and meet on Thursday 29th August in Milton Keynes. Afternoon and evening. All Crackers invited
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Re: Starting Chemo in December.

Hi Lisalouw. Yes would definitely recommend Revitalash. My lashes went very patchy after last chemo and the Revitalash brought them back really really quickly. Always had fairly long eyelashes but this stuff has made them longer than before chemo. Bit pricey though. However I started using it 17 weeks ago and I'm still using the same container. Know what you mean about the cold capped hair regrowth. Mine's growing really thickly now but the new growth insists on poking through the old stuff and I keep having to damp it to make it lay down. Much better than no hair though. Love your photo - you look great.

Lolly your hair looks fab. Take the plunge and dye it if you don't like the grey, but I think you look good and it's great you've got hair to brush again QD. Take care everyone.

B
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Re: Starting Chemo in December.

Hi
thursday 29th is fab by me. i will still be cooking 17th/18th. if it gets really late ill find a travelodge for a night so that Lolly can join us.
LisalouW - you look fab! hope the meals go well .

QD x
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Re: Starting Chemo in December.

hi cress, i can do a week day but i work till 4pm now as nearly back to work full time, not sure what time you are thinking of, i can do the weekending the 17th if you go for that date too.
so looking forward to meet you allwell the four we have so far anywy lol x

lolly
x
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Re: Starting Chemo in December.

Hello ladies , is it just QD to finish rads now then we all done , cress I hope you go on ok at hospital , border , it must be so nice to see you again in the mirror, I was thinking of trying the eye lash stuff , do you recommend it , mine are patchy at mo , lolly you look fantastic , I should put a pic of me on when I work out how to , I've now finished my rads with instruction that the skin can peak a wk after so to keep up with the cream and keep out of sun , so I'm still very pale , using steroid cream on my nipple it's abit like rudolfs nose at moment ! Breast pads in bra work a treat though and only washing with e45 wash ,hair growing fluffy so I've got long bits and fluffy bits due to cold cap but it's so better than no bits at all which I'm very grateful , not been wearing wig/hat , no way in this weather , I've bought some funky head bands which stop me looking like a boy and I'm going out for a meal on mon with the girls and a family dinner on sun and will be first time alot of people will have seen me with short hair, I had very long hair before so I just want to get it over with , I'm just waiting for an appt with onc now , love to everyone xxx
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Re: Starting Chemo in December.

Great hair Lolly.

Shall we try and agree a date in August? If we can do a weekday I suggest Thursday 29th. We could meet in the afternoon, give those working chance to get there, and then stay for a meal somewhere? That way it won't be too late for QD to get back to Brum. So far it's just 4 of us. At least that makes it easy to book a table. I can't do Sat 31st, so if it is a weekend we want then the previous weekend is bank hol so unlikely to be good and the next 2 weekends I will be on hols (Yey). Only weekend I can do in Aug would be 17th/18th. That's quite soon and may clash with QD's rads. Help!
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Re: Starting Chemo in December.

well done Lol!
I actually used a hairbrush this morning for the first time since December!!! yay!!!!

QD x
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Re: Starting Chemo in December.

Looking good Lolly!

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Re: Starting Chemo in December.

just changed my proifile picture as you can see i now have a bit of hair, would love to dye the grey out. also had my first hair cut on saturday, not alot just a SMALL trim lol
lolly
x
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Re: Starting Chemo in December.

hi i must get on here more often trying to read 38 posted and remebering where everyone is, is impossible, so hope all of you that have been feeling cr*P feels better, and for those of you who are good well done.
I have been on a weeks holiday in Brighton for the weekend then onto Hastings and loved every day, was sooooo sunny and warm felt like i was abroad, even had a game of golf, never played in my life but loved it, bet OH wishes i nevert tried it as gona be expensive lol .
I have my last appointment on Thursday with ONC hopefuly that will be it untill my opp on wrists, have heard any thing yet as to when they will be doing them.

take care luv n hugs to you all and looking forward to meeting as many of us that can meet up end of August xx
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Re: Starting Chemo in December.

Good luck Cressida. Hope it gets resolved. Bloody hormones keep trying to get us!

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Re: Starting Chemo in December.

hmmmmm
QD
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Re: Starting Chemo in December.

Maire, my thyroid stimulating hormone levels just keep dropping. It's weird because I have been feeling better whilst they get worse. Anyway - it could mean I need more thyroxine, or it could mean I need less, depends on the cause. Am waiting for choose and book to start working - obvs does not work on Fridays, like most of the NHS. According to BCN it has nothing to with cancer or any of it's evil treatments. However, when I looked up the endocrinology dept of my local hospital I saw that the clinic I need to go to to get my thyroid investigated is run by the breast surgeons. Unless it is an amazing coincidence and the endocrinologists all have the same names as the breast surgeons. Hmmmm. Anyone for a conspiracy theory?
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Re: Starting Chemo in December.

oh Cress - one thing after another. fingers crossed for you. Hope you'll be ok for end of August.
BC- thanks for your post!
Maire - funny!!!! er green no unless you like ther colour! personally i hate it. there is nothing green in my house! its so ironic that the school I work in has a green uniform!!!!!
Son home and in one piece. No i dont think he'l be on the tv - hope not anyway. tbh id rather not know what he got up to!!!!!
Daughter has completed her Silver Duke of Edinburgh (back on crutches now- ligament damage aaargh!)
Apparently radiotherapy can kill cellulitis (it can also cause it) but ive stopped oozing and my boob definitely feels softer so here's hoping!

QD x
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Re: Starting Chemo in December.

Cressida-When's your appointment? Have they told you what concerns them about your blood test? Will keep my fingers crossed for you. Hope that parking ticket machine is nice to you!
BC great to read your post. I'm at the tennis ball stage of hair growth. Maybe I should just dye it green!

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Re: Starting Chemo in December.

OMG. I need to go see a specialist. AT THE HOSPITAL. Did I mention how I hate the hospital? And how it sends me a bit (a bit??) mental.

Maybe I have boring hypothyroidism brought on my boring menopause, or maybe the radiotherapy damaged my thyroid gland (the radioation can "scatter" if the machine is not super accurate) or maybe my pituitary gland is broken (why not?). Anyway, the treatment is not the same in each of these cases, so I need to see a specialist.

I know swearing is illegal on here - so feck, feck, feck, feckity feck.
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Re: Starting Chemo in December.

Surprise, surprise, my blod test is not "normal". Now I am waiting for the GP to call me to tell me what is wrong with it.

QD - if they are happily zapping you it must be OK. I would demand the rads nurse sees you to assess what creams/dressings you need. Let's hope she is less useless than Cybele's rads nurse. Try not to squirt puss on any teenage boys. Most of them don't handle that sort of thing well, your son is an exception. Is he still in Kavos? Will he be on TV?

Well done BC on finding yourself again. I am not going to look for old me, I will focus on bashing new me into shape.

Coyote - if your customers don't care, then no-one will. Throw out wiggy. Get a hat though, for when you are not buried in the cells.

I am more than happy to meet QD and Coyote, but, anyone else? Looks like it will be at the end of August so QD can finish beng zapped.

xxx
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Re: Starting Chemo in December.

well work was fine. I walked in and said right thats it, i have had enough of wigs and hats its too bloody hot.. collegues said it looked fine and there was not one comment from any of our "guests"
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Re: Starting Chemo in December.

Evening everyone. Haven't been on here for a while and have just been reading all the posts of how you are all doing. Congrats to all who have had good news and/or are doing well and hugs to those of you who are not feeling so good. Cybele I do hope the cough is getting under control by now and that you are feeling stronger.
I had a bit of a revelation today. Just the usual sort of weekday. Did the housework, watered the garden, did some baking and then walked in the woods with my three dogs thinking what a beautiful day it was. Got home and went upstairs to change and glanced in the mirror. I suddenly realised that the face that looked back at me was in fact "me", the person I was before breast cancer mangled my existence. I stood in front of the mirror in shorts and suntop, brown as a berry, and saw eyebrows, long eyelashes (courtesy of Revitalash) and a bobbed blonde head of hair not unlike that which I had before this all started. I realised that I no longer had sore eyes and my mouth was no longer dry and my energy levels had returned to normal. I suddenly realised that in fact I felt pretty good. I've whined about sore eyes and awful dry mouth for months now as well as the mangey hair and they've gradually returned to normal and I never even noticed. Miracles do happen ladies and I hope everyone will feel like this soon. Maybe it's the weather but today I feel so good (and lucky) to be alive. Love and hugs to everyone.
B
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Re: Starting Chemo in December.

Hi
Cress- Milton keynes sounds good to me. I started rads yesterdsay and hopefully finish on Aug 8th so maybe the end of August?

Im still oozing though! is it safe to have radiotherapy on an oozing scar line?

Coyotegi - how did work go? I used to teach in a prison and very short hair was all the rage!!!!

Love to all QD x
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Re: Starting Chemo in December.

Oh and yes Cressida up for another lunch date,
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Re: Starting Chemo in December.

Cybele, lol its ment to be Coyotegirl after one of our previous horses who had a bit of attitude that i hoped i might emulate, but i didnt realise there was a limit on number of letters! her name was actually Coyote Ugly after the film( not named by us) but she was lovely.
i am due at work at 7.00 tomorrow and i think after heat of last 2 days i am going to dispense woth wigs etc and everyone will just have to deal with lack of hair....its just too hot. collegues will be fine not sure about our "customers" though....I work in a police custody suit! but hey, they cant callme anythong worse than they normally do can they?.. ........
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Re: Starting Chemo in December.

Gawd, just going to the hospital yesterday sent me a bit mental. Feel better today. Glad it amused you QD, but sorry about the delay - cellulitis - eek - take the abs. Also glad you had a good holiday Maire.

Time for another lunch date Lolly and Coyoti? This time we could do Milton Keynes beach, then more people might be able to make it. Only about 1 hour from Brum, QD.

http://www.thecentremk.com/Events/Events-Listing/Summer-begins...

Not exactly a christmas party, but good trains and roads and lots of shops and restaurants. Depending on who wants to come we could do a week day cos it would be quieter, but could do weekend if people are working (what is that?). What do you all thnk? Anyone up for it?

xx
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Re: Starting Chemo in December.

oh Cress - you do make me laugh! the car park machine obviuosly thought better of charging you!
Cybele- my kitchen cupboards are at your disposal!
Maire - glad you enjoyed the hol!
Lisalouw - ta for the hair mascara tip

Im supposed to be starting rads tomorrow but its been postponed because I have an infection (on antibiortics - yuk), had to have seroma drained (again) and a "touch of cellulitis"!!! darn it! x

QD x
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Re: Starting Chemo in December.

And hypothyroidism causes it too. Maybe I should get off google. Whichever is causing it, both are made worse by sun. There does not appear to be any treatment apart from hormones. Even more hilariously, hypothyroidism can make your hair fall out. Lets hope my tests are good. Desperately trying to look on the bright side - the hospital car park machine insisted on letting me park for free while I had my blood test. Maybe it could see I was hot and itchy and in danger of kicking it.
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Re: Starting Chemo in December.

No toxifen for me Maire. Could be the heat, but it comes on in the evening. According to NHS choices -

Menopause

Itching is also a common symptom of the menopause, which is where a woman’s periods stop, at around 52 years of age, as a result of hormonal changes. Changes in the levels of hormones, such as oestrogen, that occur during the menopause are thought to be responsible for the itching.
THANK YOU VERY MUCH CHEMO.
Also, I am not anywhere near 52.
Rant over.
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Re: Starting Chemo in December.

Thanks for all your good wishes girls.
Cress, maybe itchiness down to increased skin sensitivity after all the treatment? I'm not itching, but am considerably more spotty as a result of flush induced face sweats!
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Re: Starting Chemo in December.

Are you on Tamoxifen Cressida? It can cause itchyness I think-related to liver function......or it might just be the heat!

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Re: Starting Chemo in December.

Hi All,
Just returned from holiday in Skye. Just the tonic I needed. Fantastic weather and amazing scenery. Unfortunately managed to get pretty bad sunburn and insect bites so legs swollen up like balloons! Also managed to pile on the pounds despite a very active holiday. Strangely pain in side seems to have dissipated. I can only put it down to a change in Tamoxifen brand. I've read the threads where people find different brands make a difference but was a little cynical about it but it really does seem to make a difference. I've now had 4 packets of the things and both times I had the Relon brand I felt a bit rubbishy then a few days after starting the Wockhart brand I felt better. Weird.
Sorry to hear you're still struggling with your lungs Cybele. I really hope things settle down soon. I think our post chemo/surgery/rads bodies have one helluva lot to cope with and maybe take a bit longer to heal. I have been having long lie ins-usually not surfacing till after 10 a.m. and I am def. feeling better.
Coyotegi-You may be impressed at my managing to sit on the back of a horse for an hour in Skye without falling off. Felt sorry for the poor horse having to plod around with me on his back though! My hair is still a touch purple but think I'm going to have another go at dying it this week, but I know what you mean about splashing out on a bottle of dye for such measly hair quantity. I am now officially Cher-free! I cannot face putting the wig on anymore. It was great in Skye where nobody knows me. Bit more difficult at home but hopefully people will get used to my somewhat brutal new look soon.
Mandy-well done on the race for life. I found it quite an emotional experience but was glad I'd done it.
Sp, delighted to hear your op is over and that your results have been good. Onwards and upwards.
Lisalou-you're almost there. Just a few more sessions to get through. I didn't use any lotions or potions during rads and my skin was fine. Just lucky. Fingers crossed for you.
Cressida- breast recon thingy sounds interesting. Def worth taking your time to consider all the options. My sister is still on painkillers after her breast reconstruction almost a year ago.
Anyway, off to have a look at hair mascara on Amazon!

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Re: Starting Chemo in December.

Is anyone else itchy? I get really itchy when I am tired (which is a lot). Then the itchyness keeps me awake. So I get more tired. Antihistamines don't help and it is worse in this lovely hot weather. Is this another joy of the menopause?

Off to get my thyroid levels checked again. I hate the hospital, but I am not going to let the GP surgery nurse butcher me - have to see the phlebotomy ladies who can get blood from a stone.

x
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Re: Starting Chemo in December.

Oh there is hair mascara on amazon x
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Re: Starting Chemo in December.

Hi ladies , I'm on 15 of 20 rads , my boost wk next wk , not the weather for a red burning chest is it , very tired this wk end and over sensitive , why I'm not sure ?
SP, yeah, fantastic news, you must be over the moon x
cybelle, I do hope your lungs start to calm down , are you on any inhalers too? X
the 3 breakfast thing sounds fantastic
lv to everyone xxx
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Re: Starting Chemo in December.

Hi all xxx

Still very ropey, just coughing and coughing. GP has given me another week of Dexys. We'll see how it goes.

The Dexys have made me clean out and reorganise every single cupboard in the entire flat now - it's immaculate, which is very pleasing. Had let things slide over last few months of being ill.

Only trouble is Dexy energy is artificial and now I am very very tired. Must STOP and lie down and read this afternoon.

It's so odd being tired and wired at the same time.

Cress, that's interesting about the exercise, especially vis a vis the chemo percentages. Chimes with everything I've read about exercise and diet being the best way t oavoid reoccurrence. keep thinknig about all the oestrogen living in my fat cells... oh well, hopefully will be back in the pool soon.

QD, congrats on anniversary - quite an achievment! Hope you have a lovely time.

Mandy, sorry to hear you are having chest probs too, but glad that x ray all clear. Reassuring. V impressed about race. Well done.

Coyotegi - laughing about head mascara and multiple breakfasts. riding and field clearing sounds v impressive. What does your name mean? I keep wondering.

Sarah - fantastic news. Brilliant xxx Have i already said that in a previous post? Ah well, it bears repeating. My brain's a bit fuzzy.

OK, going to lie down now. Love to all xxx
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Re: Starting Chemo in December.

Hi all
Cybele - how are you feeling?
Cress - glad you had a constructive day (or should that be reconstructive!!!)
Mandy P - well done on race!
Coyotegi - i use make up remover and then wash hair with baby shampoo - doesnt take long!!!! the 3 breakfast thing (i remember now - the story came from my sister-in-law) was that you had: 1 porrige. 2 fresh fruit 30 mins later 3 toast 30 mins after that. apparently it worked
SP - well done!
Its my wedding anniversary today - 33years! As son is in Kavos and daughter on Duke of Edinburgh expedition the OH and I are going to see "allo allo" and go for a meal without any teenage whinging!!!!!
QD x
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Re: Starting Chemo in December.

Sarah - that sounds fantastic news (jumps up and down).

Hope you can start to have some fun now. By that I mainly mean holidays, shopping, cocktails and chillin' in the sunshine.



lots of love, Cress, xxx
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Re: Starting Chemo in December.

I have good news to share. I'm officially "in remission" after the 2nd WLE results were cancer free.

My onc says grade 1 cancer in the 1st WLE tissue is likely to be additional to the grade 3 originally biopsied (and spread to the liver & lungs). He's very positive about the indication that the grade 3 was therefore dealt with by the chemo + herceptin. In other words - as there was none left in the breast, less likely to be left anywhere else (last liver/lung CT scans clear). I'm hoping that improves my chances of staying in remission for some time to come.

Cybele, I hope you've had a better day and if you haven't sought more help, please do. It may just be that your poor body's taken so much punishment that it's showing up in a weak area. I'm truly glad not to be doing rads for the moment and really feel for you having to go through all this. Remember how strong you felt when you started to recover after the chemo? You'll get back there again.

Cressida, my WLE surgeon was the new onco-plastic variety and what he achieved asthetically given how much tissue he took out is amazing.

Sarah.x
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Re: Starting Chemo in December.

like the idea of 3 breakfasts but think its one way to put all the weight back on!
QD - just seems weird to put mascara on my head? do you wash it out or use makeupremover?
Cybele - go to the hospital. you know it makes sense really.
have been riding my horse most days and doing field clearing, hope this counts as enough exercise.....
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Re: Starting Chemo in December.

Thanks Janet.
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Re: Starting Chemo in December.

Hi Mandy and Cressida

I have attached the link to look for recon sessions:

http://www.breastcancercare.org.uk/breast-cancer-services/talks-courses-local-support/talks-courses/...

Hope this helps

Best wishes

Janet

BCC Moderator

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Re: Starting Chemo in December.

It's hard to find Mandy, but go into breast cancer services at the top of the page, then chose talks and courses (from the side), then choose talks and courses AGAIN and then chose relationships and body image. You will get a list of recon sessions. Nearly all in the North. If you pass this initiation test then you will be able to send an email asking for a place near to you. Providing you live in the north. BCC seem to be single handedly trying to redress the usual bias towards the south.

She did say 6 months is the minimum to wait, but better if you can wait a year, and even better 18 months. All to do with the state of your skin and the blood supply.

x
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Re: Starting Chemo in December.

Hi all.
I too have been suffering with lungs so got an X-ray and thank goodness ok.
Cress - no pink bag for me - was gutted! just a teal lookalike make up bag full of some rather alarming instruments! Phew. Have you started using yours or is that too much of a personal question. Yes, don't worry I've answered my own question!
The recon session sounded really interesting. How did you get to hear about it. My surgeon says 6 months after rads. How can there be so much variance?
Did the hull race for life on Sunday. Our team did really well and we think we've collectively raised over £2k and then 2 friends of mine are running the dig deep 33 mile marathon on Saturday in the peak district all for the haven. I'm so overwhelmed by it all.
Anyway must go as shattered but will catch up with everyones posts tomorrow.
Love to all.
Xxx
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Re: Starting Chemo in December.

The BCC recon thingy was very good (my compliments to any BCC invigilators who may be currently snooping about).

Well worth it if you are thinking of recon. One of the new breed of (female) oncoplastic surgeons gave a talk and then answered a squillion questions. I don't know if she intended to spend most of the time just answering questions, but it worked. All the questions were good ones, as everyone present had experience of BC and surgery and they had all given it some serious thought. She was very positive and enthusiastic. For a moment I even thought I would do it.

Happy to wait and meet my new surgeon in November. She said the best results were gained from waiting at least a year after rads, and preferably 18 months. That gives me the excuse I need to defer the decision.

She even made me think about more excercise. She presented a massive study (I don't have the reference, but I will search for it) demonstrating an 18% improvement in survivial after diagnosis if you do 3 hours excercise a week. It really improves your circulation for surgery. When you think about the fact that some people do chemo to gain an advantage of just about 5% it makes you think. Of course, it might just be that if you are well enough to do 3 hours a week then your chances were better anyway, but I am trying not to be cynical at the mo.

Now, if I can just drag myself out of the garden deck chair and go for a walk....
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Re: Starting Chemo in December.

Cybele - hope you feeling better. Just write today off - you are exhausted after yesterday. Hot weather will have affected air quality too and, therefore, your weedy lungs. If it helps, I am very envious of you seeing Blondie.

Coyote - don't dye it if your scalp is showing. Maire can tell you about her purple head....

QD - eating 3 breakfasts seems like a good idea to me, but it wasn't mine.

x
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Re: Starting Chemo in December.

Hi Cybele - go to A&E. if nothing else you will feel that someone is doing something.
Cress - let us know how you got on at the meeting.
Coyotegi - use mascara until it grows back. I heard of a lady who had no hair growth 10 weeks after chemo and was advised to eat 3 breakfasts (was that you Cress who told me that?).

getting very nervous now for Tuesday. eek!
QD x
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Re: Starting Chemo in December.

Dear Cybele

I am sorry to read that you are feeling so low, if it would help please call our helpliners to talk things through

Lines are open weekdays 9-5 and Sat 10-2 on 0808 800 6000

Take care

Lucy