Many thanks for your reply, i hope are doing well now? I was disgnosed with Triple Neg BC in Oct 2011 had chemo then right mastectomy was told all went very well then wham sucker punched wth a BC Met brain tumour last week head pains and right sided weakness, incredibly tire and wobbley, no on steroids yuk! I had my Radiotherapy Planning Session with my Consultant this morning and the senior radiographers who said it is fairlt commom for mets to go to brain from the BC, and will be He said Tumour doesn't have a name as it is a Breast Cancel Met, that's probably travelled there through my bloods veins. My blood tests I had last week were fine so I had a moulded lattice mask like a fencing mask made this morning to keep my head screwed to table and so i couldnt move and keep still during treatment it only took 3 mins to make and not too difficult to endure the hardest thing to face was seeing my CT scan photos from last week I saw the swelling area and light shaded area when 'tumour' the consultant referred to it as a 'Met' the whole area has probably reduced down now as headaches seem to have gone still walking like p****d though i've now just got the wobbles and lightheadedness from extreme exhaustion I think, the steroids doseage will reduce gradually when treatment starts. does any of this sound familiar? x x hows everybody doing? x x beautiful warm sunny day in Norwich can smell blossom in the garden lovely! x i have met lots of lovelt ladies from the bcc forum as we started chemo journey back in Nov 2011 many of them now on FB in private group called Calendar Girls and Chat Girls.......excuse me if i'm posting twice! as bit slow at the moment......confusion fog lol take care let me know how you are please? i also got privat email - pm me for details, its quite tiring reading and answering hundreds of well wishers isn't i hope people unerand not normal self during this.........i think my left fingers coming back yeayyyy 🐵 x
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I was diagnosed yesterday with brain mets prob from my bc in 2011...terrified....back in the dark waiting room prob having radio therapy will get plan and appts at Norfolk &Norwich University Hospital next week what's a gamma/cyber knife? have large mass at right front of forehead with swelling presented with bad headaches and weakness onleft side was clumsy kept dropping things left fingers co-ord not good - desperate for advice so frightened :o( xx My GP diagnosed me with Anxiety in Feb but i was rushed by 999 by my work manager a couple of days ago and ct scan showed mass where i had pointed headache out to my GP he said don't be ridiculous you haven't got a brain tumour! grrrr i knew it and he was clueless delayed by 2 months still leaning to the left a bit drunk they should have done full scan after breast cancer treatment ended wish i had insisted or even paid for one x
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Reminder everybody welcome!
Further information on Facebook under 'Calendar Girls' where some of us have migrated to, especially those who started Chemo in Oct, Nov, Dec 2011 and Jan 2012
Daysie (aka Paula)
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If anybody is looking for us we have migrated to Facebook under 'Calendar Girls' there are about 48 of us, it's a Private Group but easier to use. PM if you would like to join us!
Paula (aka Daysie)
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The 'Starting Chemo in Nov 2011' Girls will be meeting on Saturday 25 August at the Imperial Hotel, Blackpool, at 1.00pm for Afternoon Tea and the remainder of the day at leisure.
Most of us have been through Chemo, Surgery and Radiotherapy and thought it would be good to meet with the Girls who have given each other such fantastic support during the roller coaster of the last few months.
If anybody would like to join us you would be very welcome. A lot of us have migrated to Facebook under the Group Heading 'Calendar Girls'. Private Message me if you would like further info, or would like to meet with us, as many of us have been in contact with other Chemo Heads lol.
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Hi L4W - good to hear from you. A lot of us have migrated to Facebook, c/o Teresa's FB page. It's user friendly and good for sharing photos and easier to post messages etc. I think we pop in here from time to time, but nowhere near as often as we used to since the Forums changed over and all the difficulties with access that followed.
I have sent you a PM and hope to see you soon!
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Hi everyone, managed to find my way back here could somebody also PM me with the link to our Facebook page as I think it will be much easier to navigate!
I'm doing OK, although awake very early again, 4am seems to be usual these days, had distressing dream and woke up crying - haven't done that for a very long time :o(
It's weird, you think you're fine, trying to carry on as normal, then feel very down. Some days I've been very short tempered since chemo finished, wanna have a go at anybody who whinges about little things that don't really matter after what we've been through. For example, my neighbour, a few doors down, put a note through my door, politely asking when I was going to do something about my big tree. I've never seen or spoken to her before, she left her home phone number. So I rang her. She was aggrieved that my big tree was blocking the sunlight from her garden. I don't know how I kept my cool grrrrrr - she offered to contribute to have it felled. I was planning on chopping top half of it down last Autumn, then priorities changed, obviously. This neighbour sounded very drunk on the phone, ended up pouring her heart out about her husband leaving her, etc etc. I told her my situation. It turns out that she works at my hospital doing the chemo mixtures in pharmacy!!! What a small world. Then I thought, omg, I hope this woman isn't psychologically unstable and gets the mixtures wrong...what a huge responsibility, although I'm sure it's double checked lol. I told her that I will be doing something about the tallness of my tree, but not my priority, it will be done in several weeks time, probably in the Autumn when the leaves have come off again. A whole year after diagnosis...
I went to the Orthotics department at the hospital yesterday and had fitting for silicone prosthesis, I was surprised to be given new boob there and then and walked out with it in my genie bra. It is the same size, shape and feels very realistic. I think the nurse who issued it was expected me to be elated, but it's very sad to be given new boob in a box :o( I just want to be normal and not have this black cloud following me around. It's very stressful trying to act happy when inside I was want to shout and scream. I think chemo affects your ability to think - maybe that's part of the plan, zombie state to numb the emotional pain.
So now I have a new friend - in the box, silicone boob, to go alongside my wig, my denture, my glasses and contact lenses...lol. It feels surprisingly heavy, slips inside my bras, it's too big to fit in the pocket part of my bra, and it slips a bit into my cleavage area, and when I bend forward you can see the gap and scar :o( Guess I will have to buy one of those bras with a lace insert, or sew some lace in an old bra. Have to be careful not to puncture it, and extra care that my cats claws don't go through it lol, so best cuddles without it!
Hope everybody is doing as well as can be expected. I start my radiation therapy planning on 6 June and then daily sessions from 13 June for 15 days. Haven't studied what to expect, just going to get on with it, can't be worse than chemo, so should be ok.
Getting sleeping again, going back to bed - hope to see you all on Facebook 🐵
((hugs)) Paula x
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I agree with all that has been said about this forum - it is very difficult to navigate
I have seen better amateur websites, it's not like BCC are under funded! - they
should be able to afford the best web designers for our crucial support!
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Oh yes...I keep thinking of things to say...I think I've got LibraLady's appetite, can't stop eating, anything and everything, my appetite has returned big time!, I guess I've put on about a stone since final chemo :o(
I must go on a proper diet lol, but it's soooo good to be able to eat again without worrying about toilet effects lol
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Good to see you again! You look well (cliche!) and hair returning yeayy! How are you doing?
I'm ok thanks, can't believe it's been over 2 months since the last chemo, the weeks are going very fast. My mastectomy was on 2 April and feeling like I'm healing well physically, but emotionally not so good, I can't bear to look in the mirror at my operation scar, it looks horrendous, although healed well, I feel a great sense of loss. Not too bad when I wear a bra with sponge boob, I've got a couple of very pretty bras from NicolaJane website (I can recommend a black and cream embroidered one code 7021) I've got 2 of those!
After the mastectomy for about a month afterwards I felt like I'd been kicked in the ribs by a horse, especially the side and back, then I started stretching my muscles with some exercises and it's much better now. Somebody said maybe the surgeon may have to go in between the ribs to access things - I don't like to think about it too much lol. My scar area is very numb and there are a few bumpy bits and small seronoma, but the consultants have said everything is good and healing very well, the tumour was shrunk from 9cm to 2.5cm and the surgeon was very pleased, said chemo worked extremely well, and histology pathology report was all good news. Consultant said he doesn't need to see me again until next April and then annually after that.
I went to see the consultant radiotheraphy doctor and he said that there is no rush to do the radiotherapy treatment, he said in fact the longer the gap the better, I got my schedule of appointments yesterday, the planning session is on 6 June and treatment starts on Wednesday 13 June for 15 treatments.
My hair has started to come back, although probably only a couple of milli-metres at the moment, and it's mostly grey :o( I can't wait until Sept when I can colour it!
My eyelashes have returned - all of them look really nice, although only about half as long, still growing fast, also eyebrows have half returned, some leg hair returned and lady garden lol.
I've lost all my finger nails :o( but new ones were growing under the old ones, and they are returning, but very fragile and have wave ridges, think they will take quite a while to grow out, I was thinking of putting false ones on there, but decided to let them breath! My toe nails not too bad only slight damage. I have tingling at the ends of my fingers and the soles of my feet, but remember a consultant saying that is normal. My friend had tingling fingers a year after her chemo!
I haven't returned to work yet, still don't feel well enough to return to old job, although energy levels much better. I'm planning on having a couple of language students as I have plenty of room for them, have bought some twin beds and hopefully will be ready for them in a weeks time. I've done a couple of car boot sales recently, and really enjoyed it, made more than I thought I would!
All in all feeling better, even though still on the 'journey' to recovery, it is good to feel better and going out and about with friends and family a lot more than I have for the last 6 months - very nice to be out of hibernation!
Looking forward to hearing how everybody else is, and where they are up to?
Group ((hugs)) to all who have managed to find their way back here!!
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Yeayyy at last I've found you by doing a Google Search as the search facility on this site doesn't seem to be working yet, very disappointing and difficult to navigate 😮
HAPPY BIRTHDAY KYM for yesterday, sorry missed it as I couldn't find the Nov group. I've lost your phone number as it was in my private messages which BCC have grrrrrr waiting to hear where all our private stuff is!!!!!! Hope you are having a Fab Fifty Fun weekend!
I hope everybody is ok - I will catch up with all the posts as soon as I can, it's been 3 weeks since I've been able to get this forum to upload grrrrrr.
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Good morning everyone
Kym a big Yeayyy for your last day of chemo! it really is good to start feeling 'normal' again once it's finished.
It's 3 weeks today since my Mx and the area is feeling much better, it feels numb, but I was told that if I keep massaging the area with some non perfumed cream it will help and the scar dissipate. I didn't wear a bra when I left hospital, just a t-shirt and cardigan. The BCN gave me sponge boob to take home and the first week I wore tops that were gathered underneath my boobs and instead of wearing a bra I put the sponge boob above the gathered area, it stayed in place ok. I wear my genie bras now as they are more comfortable than they were a couple of weeks ago, the sponge boob stays in place ok and the appearance looks fine under clothes.
I lost my thumbnail yesterday :o( whilst cooking the sunday dinner thankfully it didn't fall in lol, there was a new nail underneath, so that's 3 i've lost now and think all the others will be going this week. The old nails went a nicotine colour and then whiteish and feel like they are stuck on to the new nails under them. The ends of my fingers are also very slightly tingly, like they have been dipped in hot water, also the soles of my feet feel the same. My toenails are ok, haven't lost any of those.
My hair is still very thin, it's hard to tell if it's growing, but I think it is a little bit, I thought there would have been more of it by now, does anybody know how long it takes for hair to return to normal? I saw the wig lady on Friday and got 2 more wigs, as mine has seen the best of its days. I asked her if my hair was coming back and she said not sure as she didn't have magnifying glass... :o(
Hope everyone has a good week.
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Sorry to hear you're still fatigued, it seems to come in waves, I'm on a bit of a high at the moment so not as tired, maybe some if it is being a little depressed, when I had chemo I lost the will to get out of bed, may not have all been chemo!
My finger nails have developed ridges that look like waves, they have split near the cutical and then become loose and eventually drop off, thankfully half a new nail is under it.
My toenails are a mess as well, they are cream coloured and feel like dead nail on top with new nail underneath. I went to the chiropodist as my GP's yesterday and she cut my toe nails as far down as she could, some were ok, but my big toes looked ridiculous after she cut them, hardly anything left, so she put 2 huge bandages on them with some iodene lol, have removed them today, they aren't as bad as the finger nails. I've also got a slight tingling sensation at the ends of my fingers, almost like they have been dipped in water that's too hot, very strange.
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Hope you're doing well after your Mx, each day gets better doesn't it. I could lift my arm to put my t-shirt on the same day as my operation, but I can't lift it straight yet, but at least I can get dressed ok and do the ironing :o( LoL
I had my nodes removed last October and didn't need any others removing. My ribs have felt sore and were bruised the first week, but much better now, I think the surgeon may have kneeled on me lol.
The operation area still aches, but not as much, getting better each day, think it's important to move around to avoid stiffening up.
Not sure what a seroma is, fluid build up? If it is then no, I don't have that.
Relieved it's over 🐵
Hope your rads go well, I'm not too worried, can't be any worse than chemo!
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...me again, keep thinking of things to tell you all, LoL, on a bit of a high after results this morning.
Regarding things in the bedroom department, lol - I haven't had the courage to show my OH my scar yet, only a little portion of it. He has told me not to worry about it, and that if we have shimmineyhoo I can keep my bra on if I want - lol, typical man!! I really don't feel like bedroom gymnastics at the moment, and I doubt I will for many more weeks! :o(
I don't even like cuddling without my sponge boob in place...
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Another PS: I've also got an appointed for the end of May at the Orthotics department, this is the place where I will be measured for a silicone prothesis (external boob). I have seen one, they look and feel like a real boob! I think they cost about £150 but we get them on the NHS.
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Hope you are all doing well, so many postings to catch up on which I haven't managed to do yet!
I'm now 2 weeks and 3 days after my mastectomy and starting to get my life back to some kind of normality. The scar is healing very well and looks clean and tidy, although a bit lumpy. numb and tight although that feeling that should pass if I massage some E45 cream on it regularly, or any non perfumed cream.
I've started to wear the Genie bras with my sponge boob in the pocket, they were uncomfortable at first but starting to feel better as my scar heals, they look fine under clothes and hard to feel the sponge boob from the real boob that used to be there, I've even got a small cleavage! LoL.
All my dressings and steri-strips have been removed and a little boob has started to appear, it's probably just fat and skin, it looks weird without a boob, and without sponge boob I feel very uneven, I don't bother when I'm on my own, or wear a top to disguise missing boob.
I went to see my consultant surgeon this morning for the first follow-up appointment, I was worried about what he was going to say, especially the findings from the diseased tissue. He walked into the room with a big smile and said "it's all good news" the histology pathology reported that the chemo had worked very well and shrunk the tumour down to 25mm, it's all gone and he doesn't need to see me again until my annual check up in 2013 and then another in 2014 and another in 2015... I walked out on cloud nine, the BCN said he said I am a strong woman, coping very well, and he is pleased that he has done a good job on me!! LoL
I go for my first radiation planning meeting on 3 May and then within 2 weeks after that start 3 weeks of radio therapy, then that's it - no tablets or anything else.
Hope to have a holiday in June or early July then phase back to the wonderful world of work. My new boss has invited me on a tenpin bowling night next week - Big LOL - said I couldn't swing my arm, but think I will go anyway, just to catch up with colleagues and my new boss, he sounded very friendly on the phone and said that I just need to ask if I need anything at all - some sick pay would be a good start!!! LoL.
Trudi - I'm going to the Big C for 11am in the morning to get a new wig LoL, if you're there for anything, or would like coffee, I could do either before or after. Sorry for the short notice!! I'm also planning on going to one of the KeepingAbreast meetings where the women show off their recon boobs and talk to us about procedures etc. Looking forward to that, although my OH is banned! - he can ask all he wants, but not allowed! LoL.
Kym - if you'd like a chat about Mx nearer the time to yours, just give me a ring and I'll give you lots of reassurance that it isn't as bad as you think it's going to be, honestly!
So that's a quick update from me, sorry not been around much lately, but now my energy is returning I've been catching up on life!
Just off to have a large slice of lemon mergingue pie mmmm yum, I've missed food! lol
TTFN - Paula x
PS: Hair starting to return a little each day, very itchy scalp especially under wig, which is a clue it's returning! yeayy :o( My finger nails are wrecked, have lost 2 nails and the others are all going to come off, they are yellow and cream in colour, but there are new nails underneath. My eyebrows and eyelashes have all gone, no sign of them returning yet, I wear eyebrow pencil and eyeliner, so doesn't notice much. Lady garden returned first...typical! LoL
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Thanks for all your best wishes messages.
For anybody facing mastectomy over the next few weeks I just thought I'd share my experience this week.
I'm 4 days after right boob removal and I'm feeling OK, not too sore and bruising only slight, much less bruising than when I had the original biopsy. I can sleep ok, no discomfort, no painkillers, no drainage, all very surreal. The dressing strip is about an inch wide and a foot long, goes from mid chest to under the armpit, feels secure and tight. It's waterproof and bathing hasn't affected it.
I'm feeling emotionally numb, and sad for my missing boob when I look down, I think when I get my prothesis (external outplant) to put inside my pocket bras, I will feel a bit better, because there won't be a noticeable boob missing. It's hard to decide what to wear as my sponge boob needs to be secure and I hsvent many clothes that will hold it securely. I have a couple of new mastectomy bras, which are very pretty (£40 each!!) and today I've ordered a pack of 3 Genie Bras from BHS they are free delivery with 20% off this weekend in black, nude and white, they look ideal to hold a prothesis or sponge boob round pants lol.
I didn't think too much about mastectomy until a couple of weeks before the operation, because I was too chemo'd to think straight, appetite returning (hope I don't put weight back on) and energy levels starting to get better, although I still hop into bed when I can. I do find it awkward with the OH, having to think about all my false bits, wig, sponge boob, contact lenses, dental plate, etc etc, things could be much worse, at least all these things are disguisable and don't hinder my every day activities, other than work at the moment. When I look at the 'starting chemo in May' link it reminds me of what a journey we have all been through and how we were when we first started out...very scared.
Kym, glad you're almost finished with chemo, don't worry too much about your operation, you will be fine, it doesn't hurt as much as you imagine. I definately want a reconstruction in a few months time, hopefully using excess fat and tissue lol, have enough spare! Will cross that hurdle after my radio therapy next month. Our plastic surgeon in Norwich is Elaine Sassoon, I have heard she is world class in excellence, she is the only one in her league here.
Not having a boob is costing me loads of money in rethinking my underwear and clothing, travelling, loss of income, etc etc, but at least I'm surviving these awful past few weeks and come through chemo and mastectomy and at last starting to feel human again. Although the dreaded constipation has returned, due to the anesthaetic :o( had prune juice, coffee and senokot, hoping for results later lol...
LINK TO GENIE BRAS
Hope I haven't waffled on too much, having a lazy day without OH, so wigless, boobless, toothless, and in my nightee lol.
Teresa - glad to hear you're doing well too, it is very strange and a relief at the same time, are you having a Recon?
Just another thought...missing boob is just the removal of Bad Contaminated Fat...the only thing that is really missing at the moment is my nipple (aeriola?). The fat can eventually be replaced and a nipple reconstructed, so all in all things could have been much worse, trying to think positively, things haven't really turned out as bad as I thought they were in Oct 2011...
Have a GOOD Friday
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Great to hear you've finally finished Chemo yeayyy what a struggle you've been through, bet you feel very relieved.
I'm on Day 3 after my Mastectomy, and doing fine, feel sore in the side of my ribs, and some bruising has appeared, but not too painful and no need for painkillers, I can move my arm ok, but taking things easy. Going to see my nurse at the GP surgery in Wednesday for removal of the dressing.
I am finding it hard to come to terms with just having one breast, it looks very weird, and I feel a great sense of loss and only half a woman. When I look down I can see my stomach, which was covered by my boob before, very odd to have roll of fat instead of breast.
I have been wearing my sponge boob round pad in my tshirt vest just so I don't look lopsided and uneven. I still have some cleavage which is probably just fat lol, but hopefully will look ok when I wear a bra again, which will probably be in 2-3 weeks as I'm too sore at the moment.
I'm looking forward to a nice sunny weekend hopefully, and seeing my girl friends, I have receive some lovely bouquets of flowers and nice cards which has cheered me up, felt very fed and and emotional this week.
Hope everyone is doing well and getting through whatever treatment stages you are at, I have completely lost track, a quick update would be good!
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