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Lesley21
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28-08-2016
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26-09-2016
06:30
Thanks fir the reply on the other thread Charys xx. No, the moles and the blackheads are two different things. The moley things are like sun damage things all down my rad side, the blackheads are blackheads all over boob, he said it was a skin infection caused to the pores by the rads but had never seen them before, he did seem a bit baffled though, trust me to get something different! Just hoping they will clear up and not be an ongoing thing, I know I dont go round flashing, but really, it's not nice!
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26-09-2016
06:24
That's what I was thinking Charys, having a break, then trying again, but when I suggested that to him he wasn't keen on that, but think I might do it anyway. Thing is,I came off hrt and started Anastrozole at the same time, so to be honest, not sure what's s/e and what's menopause, think it's probably a combination. They may be the exoerts, but we know our own bodies, so sometimes we have to do our own thing (unless it's surgery or operating the rad machine of course, I'll leave that to the exoerts)
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26-09-2016
06:11
Right Charys, you asked - I have avoided looking at boob closely since surgery, but noticed when creaming lately that it's been feeling "rough" last night I looked with specs on and was horrified to see it was completely covered in a crust of hundreds (and I do mean hundreds!) of blackheads (never mind the tiny tatto I mistook for one), also all down the rad side I'm covered in raised brown mole type things and Ive never had a mole in my life. The oncologist said he's never seen anything like them before but it's a skin infection caused by rads, said Ive been affected badly by rads, said swelling is there for good and has no idea if the blackheads will clear up or will be an ongoing thing. He also said that my body is not coping with Anastrozole and I should consider coming off it as if I continue with only getting hour and half sleep each night I'm going to be ill. I asked if I would get used to it in time, he said no, s/e don't improve, could change to tamoxifen which is better for aches and pains but worse for sweats (which are the main problem). I said I was worried about stopping the Anastrozole in case the C came back, he said its only a very small percentage improvement, Also it's no guarantee that it won't come back and stopping it is no guarantee that it will come back. Going to continue for a while and think about it xx
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26-09-2016
05:49
Saw oncologist today for follow up after rads. Started Anastrozole three and half weeks before starting, also came off hrt at the same time. Been suffering from horrendous night sweats since about day three, in the day 2-3. On a good day, several more on a bad day. sleep for about hour and half, then wake up with a start, sweats start about 60 seconds later, continue on and off through the night, just doze lightly inbetween but do not drop off to sleep completely. Oncologist said my body cannot tolerate Anastrozole and I should consider coming off it. He said being in it is no guarantee that the C will not come back, and being off it does no guarantee that it will come back. Said if I continue on it, the lack of sleep will have serious recpercussions on my health, especially as I have had bad reaction to rads and need to recover - said its a choice only I can make but it's about quality if life. Feeling very confused. I want to do everything I can to make sure the C does not come back, but do not want to make myself Ill due to exhaustion caused by lack of sleep. Has anyone else found themselves having to make this decision?
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26-09-2016
04:52
Welcome home Janey, missed you, so glad you enjoyed your break. Charys, you really are into the arty stuff arent you? The best I can do is a knit a bit but it's more a case of knit one drop two. Delly, thanks for the iT lesson. I'll practice when my head is in a better place. Think of some more places we can go in our virtual camper van. My "good place" didn't last long, had a bad day yesterday which is why I didn't tick the register. Saw oncologist today, came away confused and even more down. Just posted on the rads site, don't want to spoil our lovely haven on here. Yes, Janey, we would all pass each other on the street, but feel a bond with you all. Just had an hour chat on the phone with my bestie who now lives in Spain, but unless someone is/has experienced this they can't be on the same wave length. Everyone keeps saying to me, you've had your treatment, now you can forget it, if only! Wheres our Rubycat and Magical Moon? Do we need to send out a search party?
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26-09-2016
04:27
Hi, I finished my rads on 16 August. After being told all the way through my my skin was holding up well, on finishing I got quite bad burns and a very swollen painful nipple which has taken a long time to heal (still peeling a bit) I have avoided looking too much at boob until last night as the "rough" feeling I've noticed while creaming had got worse. On checking in the mirror while wearing my specs I was horrified to find whole breast covered in a crust like mass of literally 100's of tiny blackheads! I saw the oncologist today for my follow up. He said that he had never come across this before, but it was a skin infection caused by the rads and didn't have any idea if it would clear up or be a permanent thing. Just wondered if anyone else has experienced or heard of anything like this before? Also, he said my body is not tolerating the Anastrozole (get hour and half sleep each night before sweats kick in, and that's it sleep wise) and I won't be able to continue like that so I should consider coming off it. I'll post on the hormone thread re this one. All in all not a successful visit.
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25-09-2016
09:23
Hi Kate, hang on in there, it does get better I promise. All healed on outside now, just skin feels a bit rough, twinges and aches inside much better and generally feeling more 'up' Did manage to get through in the end but again, my BCN was busy but spoke to one of her colleagues who answered my question. She also asked how I was doing and was lovely. I told her I was seeing the oncologist in Monday for follow up after rads, she said she would try and be there at my appointment, which considering I'm not "one of hers" is really good of her, wish I'd been assigned to her not my one. To be frank, at the only meeting I had with her, after just being told the news she took me and my husband into a room and started firing details of the surgery, recovery etc at a hundred miles an hour in a chirpy way while we were both still in a state of shock - she seemed to be really excited that the date of my op, 8 June was her daughters 4th birthday and she was planning a lovely party for her! Don't expect a response from Janey, she's away at the moment and wasn't sure of Internet connection. enjoy your Sunday xx
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24-09-2016
10:52
Didn't have the vino after all, had an iced tonic water, now feeling very virtuous. Tried pop,up, view as a discussion etc, but the dialogue box disappears. Never mind, I'll do what you suggest and just send lots. Off to bed now, another sweaty night to get through, deep joy! Nighty night xx
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24-09-2016
08:39
Strange you said that about the hair disappearing from armpits Ruby but growing more on your legs - my friends neighbour in Spain is currently having chemo for BC and has lost hair from everywhere except her legs and swears that it's growing there more than usual. So, I now get it about the handbag fluff on the cake. Like Charys, wish I could get the hang of seeing all the posts as I'm typing, as soon as I'm finished I see something else that I'd like to comment on. Think my brain is getting puddled since I've stopped working. I'll have a look at that article Delly, used to get the Mail every day when I was working, now only get papers at the weekend.
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24-09-2016
07:39
Tried viewing as a pop up as per your instructions Delly, but once I do, I lose my message that I've started. Really peed off now, especially as the night sweats have started already, my positivity was short lived, think I'd better go and sit outside and cool down for a while, might even take a small vino with me, just to toast your good health all, not because I want one, rather nice of me I think xx
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24-09-2016
09:01
Morning lovely ladies, Another poopy night, the soap didn't help, though mixed with the sweat my sheets might become self cleaning? Swimming with dolphins, yeah, another dream of mine, but you'll have to hold me up Delly, I can only swim few strokes then I sink, never managed to get the hang of floating. Started my 4th month of Anastrozole on Tuesday and this time I've been given Accord (previous 3 months were Teva) now, might be my imagination and reading previous comments about others suffering when changing brand, but I think flushes and sweats were worse last night, or could just be s/e are just getting worse because I've been taking it longer. Got 2 months supply of Accord, if things continue to get worse I'll ask pharmacist to make sure I only get the Teva brand. About the comment about breasts and being single - when I said to my husband that I was terrified that I'd have to have a mastectomy, he said, why? I'll still love you! I said, my breasts are important to ME, how would you feel if you had to have your winky cut off (I used a different Word) and I said, oh, I'll still love you? He said that's different, I don't see how. Sunny here in Buckinghamshire so going to take a walk to the newsagents for the papers then sit in the sun with a coffee and do the crossword. Got to make the most of it, missed most of the summer this year due to the wretched BC so want to catch as many rays now while it's warm enough xx
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23-09-2016
07:25
PR score, no, that was not mentioned on letter. As I say, I'm ignorant on all this BC stuff, before I was diagnosed the "C" word meant the end of everything. My darling mother died of BC in January 1998, so as soon as I was diagnosed, thought that was it. Now I know it's not, heard since of lots of people years and years on living happy normal lives. All I know is, today I felt happier and better than I have for many months and feel positive (not planning the funereal songs!) Glad to be alive, enjoying the sun for the first time this year, planning things for the future, enjoyed my dinner and 2 glasses of wine and looking forward to Dellys cake complete with handbag fluff later before a hot sweaty night - who gives an 'F', I will spend the time dreaming of travelling NZ and Italy in a camper van, doesent get much better than that xx
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23-09-2016
03:15
Jackie, just wanted to tell you when I finished my rads (16 August) the feeling of relief that it was over didn't last long, I then crashed right down, felt so low, miserable and unwell. The after effects kicked in big time, in fact it was the worse I'd felt since first being diagnosed. Not helped by being unable to sleep (hot flushes/sweats). Hang on in there, there is light at the end of the tunnel. I now feel great (though still not sleeping). Just got back from mooching round the shops, got eyebrows done, treated myself to a gorgeous top. Put my makeup on before I went out and enjoyed just walking round the town, market, stopping for a latte and feeling normal again. I bumped into a few people I knew, all commented how well I looked and how upbeat I was, and I wasn't putting on a front, really feel perky. Just accept that you feel c@@p for now, but every day that passes is a day nearer to getting better. Cry if you feel like it, have a glass of wine or a bar of chocolate if that's what you fancy, just be nice to yourself and remember, this is not forever, things will get better, I promise you xx
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23-09-2016
02:56
Oh Delly, NZ has always been a dream of mine. I'll start packing now. This morning I discovered another gift from rads as well as the permanent blackhead on my chest, this one is a good one! At last the skin under my arm has healed so I decided it was ok to shave, had to put specs on (eye sight not was it was) and to my delight the hair where I burnt has vanished so just half an armpit to shave one one side now - if I had known I would have asked them to zap my chin so I didn't have to pluck my whiskers every couple of days. Googled soap under sheets - good for restless legs syndrome and cramp too. Every time in the past when I tried to come off hrt as well as the horrendous hot flushes I suffered not exactly painful, but achey twitchy legs, they're now back with a vengeance, so tonight along with chillows, cooling pads, iced water, and tonic water a bar of soap is added to the list. just back from town, skinny latte, mooch round the shops, eyebrows waxed and tinted (first time since diagnoses) and treated myself to a gorgeous top to wear to a friends 40th birthday dinner next week. Just need to get hair cut (currently look one of those women you see in the old black and white films in an asylum). Feeling more like my old self than I have in months. Enjoy your break Janey, hope the weather stays fine for you. I feel so much better after my break away in Wales, love it there, would move there tomorrow if I could move all my favourite people with me, its people that matter. Going to make a cuppa and sit in the sun and listen to the birds now the builders working on a neighbours extension seem to have downed tools, hopefully until Monday morning xx ps, you're all so knowledgable about your results, I don't understand mine at all - just looked at copy of letter from oncologist, says ER8/8, HER2-ve, no idea what it means, have I passed, did I get a distinction, or does it mean "Lesley must try harder and apply herself in future if she wishes to succeed in life"?
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23-09-2016
09:44
Ps, yes, flaxseed is a no no. Heard sage supplement is good, but some oncologists don't recommend some say it's ok - spent lots of hours researching before I found this site in my dark lonely hours xx
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23-09-2016
09:41
Morning all, in a bit of a rush to get out so this is a quick one - so sorry Delly, can't remember the names of the pills BCN mentioned, but I know at least one of them was an anti depressant, one was antitrip something that I've seen mentioned several times on here for muscle pain - none of which I can take. I'll take a notepad and pen to the oncologidts and take notes on Monday. Bar of soap? I'll try anything, I'll look that one up. MM, your story sounds very similar to mine, so I'll stick with it and hope in time it gets better. All your talk of camper vans and beautiful places makes me feel like packing up and just hitting the road and becoming a traveller. Problem is, I don't drive and husband has just had to stop driving due to health problems, Life has suddenly become very limited. Maybe I'll run away and join the circus instead. Xx
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22-09-2016
09:28
Evening all, no, haven't replaced darling Myrtle for lots of reasons, mainly because of husbands poor health, also having just given up work after 45 long hard years I don't want the tie and I don't have anyone to leave a dog with if I go away and couldn't bear the though of kennels (Myrtie slept in Bed with us). These days I sleep (well, lay in bed anyway) alone in a pool of sweat, husband is banished to another room for both our sakes. welI, know my eye sight is bad, but not that bad yet, my tattoos are black not blue, looks like I've now got a permanent blackhead on my chest, very attractive, not! Bake off won't be the same without Mary. She lives very near me. Though Ive never bumped into her I know lots of people who have. Couple of years ago my friend saw her in the local branch of Wallis buying a jacket which she then wore on an episode of Bake off. BCN came up with several drugs to help with sweats/flushes and joint pains, unfortunately none of which I can take because of drugs I have to take because of chronic daily headaches and migraines. getting ready for bed now, chillow and cooling pads are in freezer, tonic water in fridge (not sure it helps but I'm swigging it down anyway) it's a right old slog lugging it all up the stairs, oh for the old days when I could just make sure I had the patch on my bum! Xx
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22-09-2016
02:35
Thank you for welcoming me, and big yes to the hormonally challenged! Spoke to my BCN this morning for the first time since I was diagnosed to check if I could have injection in left arm (BC left side), answer no. She asked how how was coping having come off hrt after 13 years and going straight onto Anastrozole. Told her about horrendous continuous sweats all night long. She came up with a few suggestions, none of which I can take due to another medication I'm on. Said to discuss with oncologist at my appointment Monday. Unfortunately cake and wine were not mentioned but I'm going to persevere and hope they help. So sorry to hear about the loss of a loved pet. I still cry over the loss of my beloved dog Myrtle, and it will be 7 years in January. I can remember people saying things like they're like part of the family and I wanted to scream at them, she wasn't LIKE part of the family, she WAS my family. looking forward to lots of banter, chats and mutual support. Have to say that now I've finished my rads and most on my monthly thread have stopped posting I miss the daily virtual get together xx
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22-09-2016
10:52
Hi Janey, yes, I saw your dates had already been set and you've had your tattoos done after I posted on a different post. Much be such a relief to ve finally on the move as it were. Husband is on the mend thankfully. Been tryin to get through to my Breast Care Nurse all morning with no luck. I've only seen/spoken to her once and that was the day I got my diagnoses. Will keep on trying, phone constantly engaged, so frustrating! Read you've been given a gown to wear for your rads, I didn't, used to have to strip in corner of room then walk over the the machine naked from the waist up, lucky I passed the shyness stage years ago lol xx
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22-09-2016
10:42
Can I join this fun chat room? I love cake and can supply wine by the bucket. Talking of joining the dots (tattoos). I spent about 5 minutes the other day trying to squeeze a blackhead on my chest only to discover it was my tattoo!
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