Starting chemo July 2012

[jellytot83]

Hi Rosie,

I don't really come on here that much any more so have only just seen this post.

I'm doing well, my hair is now shoulder length, here's my lastest blog post http://thelittlestjojo.blogspot.co.uk/2013/07/hair-diary.html

My first annual mammogram showed everything was okay and I'm gradually getting back to being myself.

I still find things fairly difficult and fall into the why me mentality occasionally but all in all I'm doing okay.

Anyone else still come on here?

Love to everyone,

Jo xx

[everythingisro]

Hello ladies, its been a while I not even sure if you will see this thread as am a little confused with this new website!!! Have you guys been keeping in touch I have not seen any posts since January 2013. i wanted to know how your all doing. I finally finished my Herceptin so am now waiting on having a recon once that has happened I will feel like I can get on with things and not have to think about bc so much. Hows your hair growth mine growing pretty much the same as it was but it feels like its taking forever I just want a bob still cant do anythingnwith my hair but at least its growing back. Let me know how you all are how you coped since chemo finished. Hope your all doing welll. Rosie xxxxx

[everythingisro]

Hi Jo, hi ladies,
Jo thanks for sharing your blog pictures great idea looking back i forgotten what i looked like completely bald and never wanted to take pictures my hair length is prob at your month 3 stage. your eyelashes look great my are still v short and not thick at all and i am post 4 months chemo treatment when did you finish. How many rads are you having I had 15 sessions and by the last week my skin went really red and sunburnt like, its calmed down now but still there I have been putting vitamin e oil on it hoping that it will help as they took so much skin away on my left side I am quite concerned that I wont be able to have a recon done as i feel theres not enough skin to stretch there. Fingers crossed its not the case.
With the herceptin I have been ok I am half way through it now so hoping there wont be any long lasting damage, No major side effects same with the tamoxifen although i do forget to take it everyday!!!
Have you been doing anything with your hair that helps it grow faster or stimulate the growth. I am still wearing my wig as I still havent the guts to go without I was one of those girls that liked to hide behind her hair if i were to go out without my wig I would feel over exposed plus I dont want to happen to me what happen to you in the coffee shop where someone asked you what made you cut your hair so short???
Your wedding day is only weeks away amazing when you look back and think all that you have been through and you now have this beautiful day to look forward too. Wishing you all the best for your special day
wishing you all a happy easter and pray you are all getting on well
xxxxxxxxxxxxx

[jellytot83]

Hi Rosie and everyone else,

How are you all girls? Have those of you doing rads finished now? I've got 3 left and my skin is coing okay so far, it's gone a bit pink but I think they've said it will get worse before it gets better.

How's your hair doing everyone? I'm getting pretty hair! http://thelittlestjojo.blogspot.co.uk/2013/07/hair-diary.html In fact I've got my first haircut booked on 11th April so it looks tidy for my wedding (21st April).

Rosie - how are you coping with the herceptin? I've been on tamoxifen since 1st February and I've honestly had no noticable side effects at all.

Love to you all,

Jo xxx

[everythingisro]

hello ladies, its been a while since i last posted how are you all doing. I finished my rads end of Jan had it for 3 weeks it was ok but by my third week the skin started to get sore and even now i have a square red sunburnt box shaped on my left side, it hasnt faded but as long as it worked i dont care. I still have another 7 months of herceptin by then I hope to feel better and feel like this journey is coming to an end although after that I will have to look into reconstruction but I dont care as long as this never comes back. Does anyone else have that thought constantly weighing on their minds I cant seem to get rid of it that feeling is always there no matter what i do and when friends or family say oh your treatments finished well done I think you just havent the foggiest of how this C makes you feel. Its so hard to explain to people unless they are going through it because they would never understand. For me it goes beyond treatment its a whole life change and a life change that you have to stick to its not like giving up the booze for a month is it!! My days revolve around being conscious of what food I'm eating to am I doing enough exercise to can I drink normal milk is this going to bring it back etc... bah!!! its all to much, and then other times I'm just bitter, I look around me at other mums taking their kids to school moaning because their tired or have a cold and I'm there thinking I'm wearing a wig and hiding under a hat to bring my daughter to school because I recentley finished chemo please dont moan to me about your cold!!!!
Hows the hair growth girls my brows have returned but really wild looking i dont want to go and get them threaded until they are fully back my lashes are there but not enough to put mascara on they are growing back very slowly. Hair on my head has appeared but so short and I know I will be wearing my wig until I have a bob!!! I'm the worst person to have gone through chemo because I don't want anyone to know about my illness and so hide it well under my wigs and hats no one on that school run suspects a thing if anything they prob think i'm a little odd!!!
Can anyone tell me what happens next I've had the chemo and the rads but I haave yet to see an oncologist and also feel that when I do see one I'm not really told anything they dont seem to do any tests to put my mind at ease they just tell me to take my tamoxifen and thats it. Has anyone else started on tamoxifen and how are you getting on with it, so far I havent any side effects apart from the hot flushes they are so bad and get worse at night. I asked my doctor about having my ovaries removed so that there was less chance of me producing estrogen but they didnt seem to think that was a good idea, but if i'm really adamant i want them taken out do you think they would do it, basically if theres less chance of this disease returning by me having bits removed from my body which i dont really need anymore i'm more than happy to do it .
oh well ladies i hope your all doing ok and feeling good if sorry if i've gone i just have so many concerns that doctors just dont seem to understand.
take care
xxxxxxxxx

[jellytot83]

Girls, my second WLE was successful 🙂 I get clear margins - YAY!!

Been told I'm having 3 weeks worth of radiotherapy so onwards to the next stage xx

[Lauralable]

Good luck with the results Jo 🙂 I'm sure it will all be good second time round! There's huge waiting lists in Glasgow/west of scotland and got some bad news today- was due to start rads next Tuesday (5th) until the 13th of march, had my planning scan and tattoo's on the 18th of jan but got a letter today saying due to 'circumstances out with their control' they've had to change the dates to the 18th of feb-25th of march 😞 really upset, was all ready to start next week and get it all out of the way, I'm bored of sitting around, want to feel better now. I'm going to give them a call tomorrow, see what the issue was, really hoping its something daft like they double booked or its too busy or consultant never signed it off. got to get another planning scan, I think just coz theirs a delay but ill check that too.

[smc78]

Maggie thats a lovely picture of your daughter and i'm very jealous of her getting that close to my boys lol. Good news about getting your appointment at last. Its a bit poor that they forgot you though. I love my prosthesis. Its a bit uncomfortable at the moment as it feels a little heavy at times so i'm hoping it'll get better as i get more used to it. Looks wise you absolutely cannot tell in clothes and it has given me so much more confidence. I have started to rub cream on my scar and chest area already even though i'm not starting rads for 2 weeks. A friend of mine makes her own beauty products using completely natural products like bees wax and olive oil. She had breast cancer herself 7 years ago and built up her business after her own treatment. She has also given me a cream like deodrant to put on my affected armpit. Its unperfumed but to be honest i'm not sweating there so i havent worn it a lot.

I hope everyone has had a lovely weekend.
Sian xx

[Madjock]

Hi ladies
Sian, I see that you're having 25 rads sessions - it's such a bore, the time it takes to get there and all for 10 minutes treatment. The Rads Dept at Charing Cross generally ran on time and I was only kept waiting once (machine breakdown) maybe that's why it seemed such a pain as I was in and out in 15 min. Oh well, it's all over now. Glad you're feeling good.
I was tidying up files on my computer during the week and I came across the photo that you might like to see - it's my daughter with Gary Barlow, I have her permission as long as it was one of the good one's of her (she's got photos with the rest of the bunch as well - not Robbie) thought you might like to see it, if it posts that is! Since I stopped working my computer skills are now out of date, but I'll give it a try.

I eventually managed to contact my BCN and have an appointment with her next week to talk about a prosthesis, ooops they forgot to get in touch with me, but better late than never.
Good luck with the rads and keep a good eye on your skin.
Maggie

[smc78]

Hi Jo i had my mx on 12th Dec, post op check up on 23rd Dec, saw Onc last Monday and she said i'd srart them in about 3 weeks but had a call from Southampton hospital next day (where i'm having rads) to book me in for tattooing etc and that was on Wednesday of this week. I start rads on 13thth Feb so in total i'm starting exactly 9 weeks after the mx. Fingers crossed for clear margins. Do u know how many rads you're having? I found out on Wednesday i'm having 25 so 5 weeks worth the chest and nodes area. Xx

[jellytot83]

Hi Girls,

I'm okay, just really really want to get clear margins this time so I can move onto rads asap. I'm already feeling "normal" following my op on Tuesday as had no lymph nodes tested this time. I'm a little sore and bruised but thankfully had no drain in this time round which made things lots easier.

Have my appt to find out results on 01/02 - this time next week i'll know......

Sian - How long did you have to wait between your mx and being told when your rads were going to start? I jsut want to know, I'm such an OCD planner - not knowing drives me mad!

xx

xx

[smc78]

Hello ladies hope all is well. Jelly how are you doing after your 2nd WLE? Hazza i've asked 3 times to be reffered for genetics testing but still not heard anything about it so might not bother anymore. I guess they think i wont get it or dont have the gene. Laura my armpit and chest around my scar still aches 6 weeks after mx but apart from that i feel great so its a real shame that you have aches and pains that are leading you to worry. Perhaps you should mention it so someone at your next appointment then it will ease your stress.

I got my prosthesis on Monday and although it looks great in a bra and makes me feel so much more confident its a bit annoying. Its a little heavy and my bra keeps rubbing me which is really irritating but i'm hoping the more i wear it the more i'll get used to it and it wont bother me so much. I might attempt to go swimming for the 1st time this weekend but havent decided yet. I went for my rads booking yesterday and now know i'm having 5 weeks worth starting on 13th Feb. The tattoo marks they did on my chest were painless apart from the 1 right in the middle of my chest. That was horrible and felt like the man was burning me! Good job my arms were above my head or i may have smacked him lol. I felt a bit undignified laying topless on the CT scanner while 3 women, 2 men and my female onc all prodded and poked me then watched from the little computer room while i was scanned. It didnt last long but i was still a bit embarrassed. I hope it wont be like that for the actual rads. Well ladies i'm feeling really good at the moment, probably the happiest i've felt in a year or more. I wish i could bottle this feeling and open it for any of us who need it when we're feeling down. Have a good day.
Sian xx

[Lauralable]

Hope the op went well jelly 🙂 hopefully you're relaxing and recovering now. I'm not unemployed hazza coz of illness, unfortunately I work for a university on contracted research projects and my contact came to an end so I'm just having some time off at the moment. I signed up to macmillian exercise classes (might just be a Glasgow thing?) and go out walking every day, start rads in the 5/2/13 till 13/3/13 that are very early im the morning so think ill be busy and tired with that for the time being. My boss has said she'll find me a job when I want one or I had been in the process of applying for a phd so ill see what my options are. I saved when I was off on sick leave as fortunately I got a generous pay plus some redundancy coz I'd worked for them for 4 years.

Anyone else sick of worrying that every little ache or pain is a bad sign? I've got a sore shoulder/neck on my 'good side' which I think is a result of doing too much with it coz of ANC in bad side plus implant but I'm now panicing that its in my nodes or something. My brain is telling me that there's no lumps or signs to worry about, my scans were clear, that I've been sleeping funny for weeks coz of surgery and arm and new boob so think its a combination of all but still 😞 ah well, what will be wil be I suppose. hope everyone else is well xxx

[hazza81]

hi girls
jelly good luck with your WLE, at least you know the drill this time and the whole process is not so scary!
laurable, sorry to hear you are unemployed, was it because you were off sick?? I haven't got an exact start date for my work yet and they seem to be being difficult and I'm not sure why, I'm due to start v soon so bit anxious about it!
sian good luck with rads starting.
Madjock - have you had your wrapping up appointment with onc?? Mine is in 2 weeks and want to write down all the questions I need to ask, or have been avoiding asking!
I have just got a letter about a genetics appiontment at end of Feb, has anyone been for one of these consultations?
lots of love xox

[Madjock]

Hi Sian
I think the reason I haven’t had any scans since before mx is because I was a definite for radiotherapy, no question about it. Possibly the site of the cancer makes a difference as well, mine was mainly behind the nipple. Something about people talking about injury to nipple makes me cringe and I remember first and only time I spoke to surgeon she was talking about possibly just removing the nipple I went weak at the knees but then after scan it wasn’t an option. Good to hear they are keeping a close eye on you, and happy that you don’t have to worry about transport to the hospital for your rads.
As I said earlier, appointment with onc mid Feb and I’ll sort everything out then, a few weeks will make no difference. Onc said she had referred me to Cardio Dept (way back in October) as my heart rate was way too high but haven’t heard from them either (again on the ask list). I am not going for any recon although they did say I could have this done at any time. I’m 66 now, birthday last month, and I don’t know that it’s worth the possible problems at my age (still think I’m 25 but body tells me to dream on).
Going to find something for lunch and take my pill (anastrozole). Never had to take anything long-term and I have had to put a reminder on my phone!
Have a good day, Maggie

[jellytot83]

Hi Ladies,

I'm going in for my second WLE (Wide Local Excision / Lumpectomy Rosie http://en.wikipedia.org/wiki/Wide_local_excision) tomorrow, really hoping the snow doesn't mean it becomes cancelled or anything!

How are the rads going for those of you still having them?

Rosie - I'm not really following a diet to be honest. I'm going to eat more healthily but until someone tells me "X causes cancer" then I'm going to carry on as before. What about you?

As for my hair, it's is coming back pretty well, check this out... http://thelittlestjojo.blogspot.co.uk/2013/01/hair-diary.html

xxx

[smc78]

Morning Maggie i hope you slept well. You probably needed it after that. I went for a long walk in snow on Saturday with my son, siter, nephew and their dog. Its so beautiful with snow on the trees and everything is really quiet at night. Its a bit eerie actually sometimes. The paths are all iced over now and dangerous to walk on. Schhols have re opened here although if i was working i'd be off as mine seems to be the only school closed in the area. I'm looking after my nephew this morning as my sis decided the route to his school was too dangerous. We are having a Spongebob Squarepants marathon on tv at the moment.

I had a CT scan the day before my last lot of chemo in October and the surgeon said they could still see cancer cells dotted about in the breast tissue when i had the mx in Dec. I would guess the cells are too small to actually see so i assume the tissue was tested so thats how they know. I have been really well looked after and my next appointments are usually already arranged for me when i go in to the hospital for something. Either that or i get letters in the post. I saw my onc last week and she said i had to wait for a letter to go to Southampton this week about rads but Southampton hospital called me the next morning and arranged it all plus the transport so i dont have to worry about anything. I knew about my appointment today to get my prosthesis when i had my post op check up on 23rd Dec. It seems odd that you havent had any scans or appointments. Maybe u could ring your breast care nurse and ask about it. Are u going to have a reconstruction anytime? I want mine as soon as possible but think i need to wait about a year so i reckon about this time next year. It gives me a chance to lose a bit of weight which i'm happy about. Thanks for the info about rads.

Have a good day
Sian xx

[Madjock]

Sian, really glad you’ve managed to sort out the finances with the benefits adviser. One less thing for you to worry about.
How did your onc know that the chemo hadn’t finished off all the cancer cells, have you had a scan of some sort, I thought that was the only way they could tell, but I could well be wrong. I don’t know if I still have cancer cells left as I have had no scans of any sort since before my mx but I think the rads guy was going to arrange a something (well he told me he would arrange it but I don’t know for when). I have an appointment with onc mid February and this was one of the questions on my list! No one has contacted me about a prosthesis yet, but I was assuming that was because of the rads as sometimes they like the rads to be over in case of skin problems as I will be looking for a more permanent prosthesis (another question on the list). I had 25 sessions of rads but that was because of the heavy lymph node involvement and I can’t say as they bothered me that much, just going every day was the hassle, 45 min to get there, 10 min treatment and 45 min to get home, always seemed such a waste of a day. Skin only just started to break down at the last knockings but it’s fine now, just got a mark like a nearly healed burn but that’s fading. My arm and side, where the upper arm meets the body is often tight at night and feels swollen (it isn’t), same in the morning, I was assuming that my body was still trying to sort out how to get rid of the fluid now that the lymph nodes are missing. It’s not painful so I’m not complaining.
My hair is starting to grow back now. Never actually lost eyebrows but the parts where I haven’t had to pluck them for years have started growing again so I will have to find the tweezers!
Ah well, going to bed now feeling tired as I had a busy day building a snowman in the back garden with my 30 year old daughter (we’re all mad here). Goodnight all and take care.
Maggie

[smc78]

Hi everyone. Well i'm getting somewhere on the money front. The benefits lady was very helpful, she said she'd speak to the council and get them to re do the figures as we couldnt make head nor tail of it. They seem to have me down as earning more money than i actually get somehow. She said even if it is correct she can get them to reduce the amount they are taking off to cover the overpayments so that will help. I applied for Employment Support Allowance and have been granted it from the end of the month and i realised i wont lose all my tax credits just the Working Tax credit so its looking brighter now. I dont think i do have cording now as my arm seems to be ok. My chest and arm always seeem tight in the evening especially when i take my bra off. Does anybody else feel like that? I have my prosthesis fitting tomorrow morning so i'll be able to talk to my breast care nusre about it all. I bought a fab mastectomy bra off Marks and Spencer online. It was reduced and without the VAT on top only cost me £7.20. Its purple with pink flowers on and fits really well. I shall definately be getting some more off their site. I have my 1st appointment at Southampton hospital for rads planning on Wed atfernoon. I'm getting a car sent for me as they know i cant get there otherwise. My treatment has all been at Salisbury hospital which is about 40 mins away but the nearest hospitals with the rads machines are in Bristol, Bath or Southampton all of which are about an hour from me. My onc works in Salisbury and Southampton hospitals so theats why i was sent there. I started taking Tamoxifen last week and noticed my knees ache a little like they did through chemo but nowhere near as bad as then.
Maggie- You had a lot of nodes affected and here's me worrying about my 5! I guess (well at least i hope!) they got all the cells with the surgery. The 1st thing my onc said last week when i saw her to discuss rads was that the chemo hadnt killed all the cells. I have to have rads to my chest and nodes are. I'm assuming u had the same and if so how was it? I know u mentioned the skin was ok. How many did u have?

Jo- i didnt bother ringing Macmillan in the end as the hospital automatically sorted out the transport. A friend told me that u can get grants off Macmillan for anything that will make your life easier. I dont know how true it is but she said u could get money for a new bed if u find it difficult to sleep or if u need new clothes coz you've put on weight with treatment etc. Its worth a try though as that will cost you a fortune in petrol. Ask at your hospital if they have local macmillan nurses. Mine have 2 so i rang them for advice about benefits before Christmas.

Rosie- i'm 34 and feel the same about not having boobs although i'm only missing one. To be honest i think i'd prefer to have none rather than one as at least when i get a reconstruction they will be matched. I think i'll have to wait about a year so i'm guessing this time next year hopefully. Have u any idea what type of recon u want? I'm going to have the DIEP flap where they take fat from your stomach to make the new boob. A lady i work with diagnosed a year before me had that op on Friday so i shall be following her progress and recovery to see how she gets on. I've showed my scar to quite a few people, only close friends or people i work with. I want them to see what i'm living with but also becasue i like to think i'm raising awereness to my friends of what could happen to them if they dont check themselves! My hair is quite fluffy and getting darker but doesnt seem to be thick. U can still see my scalp through it so i hope it picks up soon. My lashes are starting to come back and my brows are still patchy. Why do the eyebrow hairs that have grown back grow in the wrong places lol. I need to pluck a few of them round the edges yet they're still gappy in the middle.

[Lauralable]

Hey ladies, hope everyone is having a good jan 🙂 I'm good, recovering forum the op thankfully, had to go back twice a week while they inflated the implant but it all went well. Had my rads planning appointment on fri, tattoos I thought were sore, especially the middle one, start the 5th of feb. Otherwise I'm just trying to keep fit and healthy and lose weight 😞 good luck with the new op jellytot, you'll be a pro by now so probably in and out the same day! Hope rads are still going well everyone else, good luck going back to work Hazza. Good luck with sorting money situation Sian, scary stuff 😞 I'm unemployed now so feel your paGood good health to us all xxx

[hazza81]

Hi girls,
I hope you all had a nice christmas and here's to a better 2013 than 2012!
everyone seems to be getting on well with their treatment, rads surgery etc!
I am def with you sian and rosie on the scary thoughts stage, I was a complete nightmare for about a month after my last treatment, crying, emotional stroppy etc etc, I am glad to say I have levelled out a bit for the time being! Though I do still feel like I am just waiting for bad news, and I am so jealous of anyone who doesn't have something like this to worry about. But I guess everyone has their own problems!
I'm with you rosie on feeling exposed when having rads, on one day I had 2 young males looking after me, drawing on me, moving me etc etc and I just thought, this is sooooo embarrasing, I didn't feel uncomfortable, just really embarrased! Glad its over!
Heading back to work in 2 weeks, feel quite stressed about it, but bills to pay!
thinking of you all
xox

[Madjock]

Hi Rosie - this rads on a daily basis is a real pain and time consuming for a few minutes of actual therapy, but hey ho soon be over. How many are you having. I had 25, thought they would never be over. Why do you have to strip off in front of the radiographers, don't they have changing rooms where you can undress and put on a gown. I was at Charing Cross and I used a cubicle to change and put on gown - and believe me I kept my hat on during actual rads, it was a bit nippy where they actually did the treatment. Radiographers, both male and female, did all they could to help me keep what dignity I had left. I think they were using permanent marker pens to mark me up, a real sod to get that ink off. The numbers they talk are just to get you in the proper position.
Like you my hair is growing, slowly but nonetheless I can see it now. Didn't lose my eyebrows but I can feel eyelashes have grown a bit - the only decent family trait I got was long eyelashes and they all went.
Do you have an appointment to see your surgeon to find out about recon and when you can have it done. If not phone your BCN and talk to her about getting an early appointment to talk to someone - I know you're not asking to have the recon immediately, body has to heal, but a time scale would be good.
I've been taking the anastrazole for about 2 weeks now, can't say I've noticed any SEs but probably not been taking them long enough.
Jelly, 12 weeks till you get married, it will be on you before you know.
Keep going ladies, you will all get there.
Maggie

[everythingisro]

Hi gals, I'm in waiting room again waiting to be called for my 4th rad, so far ok but as I understand the skin does get affected towards the end thank u ladies who have had rads & let us know what happens! Jellytot im rubbish with the abbrv what have u had done & what do u have to go back for, will it be a full on op again??? The worst about rhe rads for me has been the havin to take off my top & hat in front of strangers as they mark my body & read out numbers to eachother i havent the foggiest wot they are up to but sounds v much like you need to have done a degree in math to be a radiographer!! No one has seen my scars & then im on that bed all exposed, i know they see it every day but it doesnt make it any easier i really miss my boobs & feel v alien without them God knows when a reconstruction will happen drs havent really discussed it i hope it will be done though im only 35 i cant not have boobs. Does anyone have tips on hair growth especially head hair & eyebrows & lashes, head hair is coming back but not fast enough & lashes & brows are non exsistent. Also are any of you following a diet to prevent reoccurence
I hope you are all doing ok
xxxxx

[jellytot83]

Hi Julyers,

Well I had my WLE and SNB on 18th December. Had the results on Friday, my WLe didn't get clear margins so I have to go back in for a second one on 22/01. Bit of a pain but ho hum.

On the positive side, my SNB showed that none of my lymph nodes were affected which is flipping marvellous news.

I do still need to have radiotherapy after my second WLE but obv that's been postponed until the 2nd op is out of the way.

Sian - I didn't know you could get funding from Macmillan. My radiotherapy is in Guildford and I live in haywards Heath so it's an 100 miles round trip. That every day for however many weeks is certainly going to add up in petrol! Do you know how you go about applying?

Thanks Gadget for your tips

Rosie - How's the radiotherapy going?

Maggie - Well done on finishing it all!! How's the Anastrazole going?

Love Me xx

P.S. 12 weeks til i get married!!

[Gadget__gal]

Happy New Year ladies,

Im a few weeks adhead of you all in treatment schedule and I thought id post as i have a feW few things in common.

I had the mastectomy after chemo, despite tumor shrinkgage, the lead surgeon wasnt taking any changes. When the pathology report came back, it showed there were stray cells outside the tumor and 11/18 nodes had been affected. So the mastectomy was necessary.

Since then, ive had a follow-up CT scan which came back clear.

I had 5 weeks radiotherapy, commuted to St Barts in London everyday. The commute was tiring as I elected for 9-10am appointments but it left the rest of the day free. They used the bolus pad in All 25 sessions, therforee I had double intensity. My skin held up until the last week and then it got so dark the radiographers had to use a flashlight to find the tatoos! (i'm black, so when my skin darkened it went, well, black)

In the week after radiotherapy the skin got blistery and weepy and then started to peel. They gave me some creams to protect the skin. The Flamazine was good but we found im not supposed to use it because im G6PD deficient. Now i use Aquaform, which is like a burn gel. They also gave me some non-stick dressings to stop my bra rubbing on the area.

If anyone is based in London, do try the breast cancer Haven in fulham. Youd be offered a total of 10 hours of therapies (massage, counsellimg etc) and they have support groups. I go to the young womens support group once a month.

[Gadget__gal]

Happy New Year ladies,

Im a few weeks adhead of you all in treatment schedule and I thought id post as mhave a feW few things in common.

I had the mastectomy after chemo, despite tumor shrinkgage, the lead surgeon wasnt taking any changes. When thenpathologynporet came back it showed there were stay cells outside tumor and 11/18 nodes had been affected. So the mastectomy was necessary.

Since then, ive had a follow-up CT scan which came back clear.

I had 5 weeks radiotherapy, commuted to St Barts in London everyday. The commute was tiring as i elected for 9-10am appointments but it left the rest of the day free. They used the bolus pad in All 25 sessions, therforee i had double initensity. My skin held up untill the last week when it got so dark the radiographers had to use a flashlight to find the tatoos! (i'm black, so when my skin darkened it went, well, black)

In the week afger radiotherapy the skin got blistery and weepy and then started to peel. They gave me some creams to protect the skin. The Flamazine was good but we found im not supposed to use it because im G6PD deficient. Now i use Aquaform, which is like a burn gel. They also gave me some non-stick dressings to stop my bra rubbing on the area.

If anyone is based in London, do try the breast cancer Haven in fulham. Youd be offered a total of 10 hours of therapies (massage, counsellimg etc) and they have support groups. I go to the young womens support group once a month.

[everythingisro]

Hi ladies,
sian I had cording after my op to be fair I didn't really follow the exercises only when I remembered & then I'd just do the easy ones just stretching the arms in front of you it eased up after a few weeks post op like madjock said I felt I was doing enough exercises with my kids!!! Sian I too had 6 nodes affected but I like what Maggie wrote & that's the way to think that they were there protecting the rest of the body doing there purpose. My oh always tells me to stay positive because if something happens to me he'll put my kids in a home he says that to keep me focused & not think negative thoughts. Can't believe u have so far to travel for rads im having to get on the tube everyday to central London so I'm treating it as if I'm going to work. after chemo rads are pretty straight forward I think if we can get through chemo we can get through anything.

Madjock thank u so much for sharing the story about your mum it gives hope as I find I always tend to focus on the negative stories & thino the worst I'm goin in for rad no 3 chat soon ladies
xxxx.

[Madjock]

Hi Sian
Glad your op went well but sorry to hear about the cording. Fraid I can help you on the cording as I didn’t have any major problems after mx. I did do the exercises for a couple of weeks but after that I reckoned I got enough exercise just doing general lifting and laying. My OH and daughter are taller than me so things they put away I have to stretch for which I suppose was good exercise. I still feel a little tight when I have to really stretch up but not sure if this is the after-effects of the rads or just a thing I’ll have to live with. Must be honest and say that I didn’t use much cream at all during rads but am now using E45 on the dry and tender parts. Skin not quite broken but looks as if another couple of sessions and it would have been ‘weeping’ in parts. Not particularly painful more of an annoyance.
When you say there were still cancer cells in your breast tissue, do you mean before the op and that the op cleared it. 5 lymph nodes involved is certainly a worry for you, but as you’re still a young woman I’m sure they will keep a good eye on things (if not give them grief). I had 15 of 18 nodes affected but I feel that the nodes were doing their job and keeping the cancer cells from the rest of the body.
I know you worry about your boy – my mother had breast cancer in her thirties and she told me she worried for years about the 3 of us. She knew our dad wouldn’t have looked after us and we would have been in a home, she lived for 30 years plus after her mx (death totally unrelated to cancer). You’ll have good days and bad days but over time the good days will outnumber the bad.
As far as your finances are concerned if you don’t get any help from the Council’s adviser try talking to Macmillan I gather they have people who know about all benefits you are entitled to. It’s ridiculous that they give with one hand and take with the other. This is a time when they should be giving you all the support you need. You’re normally in work and paying into the system but as usual if you don’t know how to ‘play’ the system then you get zilch. You don’t need this on top of all your other worries.
Sorry I’ve not been of much help to you but I hope all goes well with the Council adviser. Take care of yourself.
Maggie

[smc78]

Hello everyone Happy New Year! I hope you're all doing well. I havent had any more treatment since my op on 12th Dec and not been to hospital since my post op check up on 23rd Dec. The news was kind of mixed in my eyes. They said there were still cancer cells dotted about in the breast tissue so having the mx was definately the right decision but the not so great news was that there were cancer cells in 5 of the 14 lymph nodes they took out. I dont know if its just me but that seems a lot compared to most people and i guess i will never get the all clear now. In my mind there is always the possibility of recurrance and i will never know for definate if none of the cells had escaped from the nodes and spread to other parts in my body unless it never comes back. I have those horrible thoughts like you Rosie but most of the time i manage to stay on top of them and push them away. My biggest fear is leaving my son practically an orphan. (He barely has contact with his father)

Laura how did the inflating of your boob going? I had my drain in up untill my post op check up so 9 days in total.

Hazza well done on completing rads. How are the flushes now you've had a bit more acupuncture?

Maggie congrats to u too for getting rads over with. How is your skin looking now and what cream have you and Hazza been using? A friend has told me to use pure aloe vera gel.

Have any of you had cording? I think i've got some as the area around my armpit ir really tight and has been for a couple of days. I've been doing the exercises daily but still cant lift my arm to completely straight yet. Its painfull to stretch my arms out like in a jesus on the cross pose now that this cording has kicked in. Its also painful to put my left (affected) arm onto my right shoulder. My scar is healing well though. I got the appointment through today to see onc next Monday. I guess its about rads. Not sure if she'll have my dates all ready for me or if its just to chat about the refferal. I have to travel to Southampton for rads which is an hour away. I dont have a car so have been told to ask Macmillan for a grant for petrol or public transport costs. Any body else done this? I'm also having major money dramas this month. My wages went to half pay as of 8th Dec so i was £240 short come pay day. I contacted housing benefit and they say i've been overpaid over the last year so instead of giving me more benefit its actually halved! I cant claim Emplyment Support Allowance untill 21st Jan when i've been off 6 months so there is nothing to replace that loss untill then but on the same date i will lose my tax credits which is nearly £500! No idea what benefit i can get to replace it so i have a lady from the councils benefits and debt advice service coming round on Wednesday to help me sort things out. Could really do without all this worry.

Sian xx

[everythingisro]

Hi girls, happy new year to you all I hope u managed to enjoy the holidays! I'm in the hospital waiting room waiting to be called for my first rad bah!!! I have 3 weeks of it I hope all the treAtment will work everyday I wake up with the dreaded thought of reoccurrence maybe I feel worse when I have to come to hospital. I started tamoxifen a week ago so far just a nasty taste in my mouth the hot flushes I had after chemo there part of my day seemed to have got used to them. Is anyone else feeling scared I mean I don't know am I doin enough to rid this bugger 4 ever it doesn't help that I just read a post about a girl who's mum died 10 years later that's put me in a bad frame of mind arghhhh. Sorry girls I think I'm feeling like this because I'm here in this place & everyone else around me on the tube in reception they've all got their hair & breasts & eat & drink whatever they like & I feel like why does this have to happen why? Girls if any of u in London & want to meet up would like that xxxxx

[Madjock]

Hi ladies, long time since I’ve been on. Hope you’ve all recovered from Christmas and looking forward to the New Year celebrations.
Had my final rads treatment last Friday, absolutely soopa, five weeks of dragging to the hospital every day was a real pain. Getting there and back on the tube was a bit of a nightmare what with the build up to Christmas, horrendous traffic and packed trains as most of my appointments seemed to be in the rush hour – but hey ho I survived. Rads not too bad, skin just starting to break down over the last couple of sessions but radiographer didn’t seem particularly concerned.
Started taking the anastrazole (arimidex) today, should have started yesterday but I was meeting an old friend last night and thought I would treat myself to a couple of drinks, didn’t want to think about possible side-effects so just delayed pills for a day.
Don’t have to go back to hospital until mid-February! I have 3 appointment cards, all with the same date, same time but with different people (oncologist, radiotherapy chap and surgeon) neat trick eh what! I’ll just get there early for my appointment and let them sort it out.
I’m looking forward to the New Year now that treatment has finished, I hope to be able to get back to some sort of normality – house needs a good (and I mean good) clean, so as soon as the celebrations are over I will start at the top and work my way down, that will take me to at least Spring, then I’ll start on the outside and get someone in to make the place look as if it’s actually lived in and not derelict. OH not fit to do it and I didn’t give a ‘monkeys’ when I was on chemo.
Have a good New Year and I wish you all good health and happiness.
Maggie

[jellytot83]

Merry Christmas Julyers (if any of you are still awake!) I had better catch a sleep fairy soon or Santa is gonna miss me out!

Thank you for all your advice this year, has been a massive lifeline xxx

[hazza81]

hi girls.
jelly, think I was driving after 2 weeks or so, I had sentinal node biopsy ( they took 5 nodes, 1 of which had a micro met). It was back in July so it all seems a distant memory!
Laurable - good luck with the boob inflation!
sian I am glad the op went well, another box to tick!
I think the acupuncture might be working, hot flushes have def subsided, still there, but not as many as before. the needles in my ear were not too bad this time, would def recommend it especially if there is somewhere that your hospital recommends ( I get mine done at the holistic centre where I have my radio)
3 more rads to go, its the count down!
xox

[Lauralable]

Good luck tomorrow Jo. The GA is honestly not that bad, I've had 2 this year (one for the SNB and one for the surgery), I'd imagine you won't be out for too long and i woke up feeling fine, just sleepy still. Hope it all goes well, it's a good feeling knowing its all gone 🙂 one cannula in your hand to put u out (the stuff they out through it is called proponal i think). my wee boob is doing well, was bk at hospital on fri for check up, got bandages off and start inflating tomorrow! It's coz I got my rads dates through- planning is the 18/1/13 then start 5/2/13 till 11/3/13 so need to have finished inflating by then. Hopefully it's not painful!! They're starting with 30ml of saline so it's not too much but in total I need 525ml put in to even it out. Got my pathology results too- they can't definitely decide what size it was original- ive been told everything from 4cm to 5.6cm but it was 2.8 when taken out, mostly still alive cancer unfortunately but some was dead, 12 nodes taken all clear, 2cm clear margins, all as expected. So double be worse, could be better. Seeing my consultant on wed just to have a chat about it all which is good I think, maybe settle my mind.

hope you get the drain thing sorted Sian, I had 3 in but I got them all out before I left hospital, I really didn't have a lot of fluid actually, I think I've been a wee bit swollen since but it's calmed down lots. The hot flushes too I can sympathise with, didn't have them too bad on chemo but since finishing its been a nightmare!!x

[smc78]

Hi girls. Good luck for tomorrow Jo. I'm sure you will be fine under the GA. I had it for my mx last Wednseday and it was fine. I had a canula in my hand and they put some kind of fluid through it which i didnt feel but the 2nd one was very cold and i felt it go all up my arm, down my throat towards my chest and thats the last thing i remember before i woke up so its very quick. I was very tired when i came round but not sick or feeling rubbish. My op went well apparantly. The scar looks good although i've only seen it once when they changed the dressing. I have a lot more movement than i expected and apart from the pain coming from my nerves (which is absolute agony!) it doesnt hurt that much. I havent taken any pain killers since 8.30am today and i'm comfortable enough. I have got a slight problem with my drain. There is a build up of fluid under my arm, in my armpit and in my chest even though i have a drain in and it is taking away some of the fluid but obviously not enough. I know this is commone after the drain is removed but not so sure it should be happening while its still in place. The hospital dont seem concerned though. I'm back there on Friday for my post op check up so it will be removed by then if not before and hopefully they will drain away this excess fluid so i no longer feel like a water bed lol. Hazza i'm starting to get more and more hot flushes now but i dont think i could go through with acupuncture like you. Hope everyone is doing ok.
Sian x

[jellytot83]

Hey Hazza, that's good to know, did you have any lymph nodes out at the same time? They said they were going to do a sentinel node biopsy on me at the same time. I'm the same as you, never had a GA before either, so that's what makeys me nervous too. How long was it before you could drive?
You are brave having acupuncture, needles in the ear? OMG!
How many more rads have you got left?
X

[hazza81]

Hi girls,

Jelly - I had a wLE and it was fine, very little pain just discomfort more than anything. I had never had a ga before so that was the scary bit for me, it was just like going off to sleep, really easy! I didn't need a drain, not sure when you need one or not.
Rads still ongoing. had acupuncture for my hot flushes last week, got a session tomorrow, fingers crossed it works, as I didn't really enjoy having the needles put in my ear, though it was ok once they were in!
thinking about all of you
xox

[jellytot83]

Hi Lovelies,

Hope you're all doing okay. We had a nice weekend seeing family and friends and finally put our tree up.

I am off to the hospital in a bit for my nuclear medicine appointment. Not sure exactly what it entails but I'll find out. Then I have my WLE on Tuesday which I am terrified about. I can't remember if any of you had WLEs?

Jelly x

[Madjock]

Hi ladies
Jellytot - so sorry to hear your OH has been made redundant - sometimes life has a real go at breaking your spirit. I hope he's not out of work for too long and that you can get on with your plans without worry.
Sian - I glad your mastectomy went well. Funnily enoough I had those pains in my back - and damn painful they are, it felt as if they had left a scalpel in my back - but must admit pains only lasted a day and then finished. Hope you enjoy the Nativty play.
Angela - lucky you finishing rads - I still have another 9 to go - actually have last one on 28th December. I'm not going to start taking the arimidex until I finish rads. Last time I spoke to oncologist I asked when I should start taking these and she told me to please myself, start taking them while on rads or wait until I finish, my choice. So I'm going to wait until after Christmas and have a side efffect free Christmas. This rads business is a real pain, every day - I ask you do they think at this time of the year I have nothing better to do. Wouldn't be so bad but every appointment I have seems to be between 4.30 and 6 pm. Wastes my whole day. Why do they bother asking if you would prefer a.m. or p.m. of course I told them morning and every one so far has been late afternoon (should have said I preferred afternoon!!).
Everythingisrosie - Must admit I haven't done arm exercises since mx, I was keen then and didn't want to end up with an arm I couldn't use. But since I started rads I haven't done any particular exercises, apart from the shrugging of the shoulder bit but that's only because my skin sometimes feels tight, not painful, and don't tell anyone but I don't use the cream either, got the cream but I was waiting to see if I had any problems and I haven't. Although in saying that if you are having reconstruction then I would use the cream to keep the skin supple - my unqualified and probably unwanted opinion only.
I think I have chemobrain - it's my birthday next week and for some unknown reason I have knocked a year off my age - I actually had to sit down and work out how old I am and then I didn't believe it, had to check with my OH. God it's sad.
Good night ladies and take care.
Maggie

[smc78]

Hi girls Congratulations Angela on finishing Rads. The tears are more than likely relief that this bit is over. Is that all of your treatments done now? Jo thats awful news about the redundancy. There is never a good time for bad news but just before xmas after the year you've had is just an extra kick in the nuts. If there is a big man in the sky then i'd aim that kick his way for doing this to all of us.

I'm recovering from my mx yesterday. The only painful bit is the nerves in my back. Every so often when i move they twinge and my god it hurts! The scar area is numb so not painfull at all. They said the op went well and they got everything out but i will get the proper results next Friday when i go back for post op check up. I've done my exercises tonight and i'm keeping on top of the painkillers. Off to see my nephews school nativity in the morning then i'll be resting all day.
Sian x

[stiz]

Jellytot,

So sorry to hear about your OH, I know what you mean about this year, several things have gone wrong for us so I can't wait for new year, it better be bloody better than this one.

I started taking tamoxifen 3 weeks after my last chemo so been on it for just over 4 weeks now. Not too sure about after surgery though best to ask your surgeon.

Hope it goes well & that you can enjoy Christmas X

[jellytot83]

Angela, Well done you!!! Quick question re tamoxifen, how long after chemo did you start taking it? I know i mustn't take it before surgery (on Tues next week) but just wondered how long i'm supposed to wait afterwards.

I had shite news yesterday, my OH has been made redundant 😞 Don't really know what else this year can chuck at me!!

[stiz]

Hi Ladies,

I'm now a Rad Grad! so happy that I had a little cry in the car on the way home today.

Hope everyone else is coping with their next steps.

The only Tamoxifen se's I have at the moment is hot flushes so hopefully won't be too bad for the rest of you either.

Angela x

[Lauralable]

Hey jellytot, pre op is really easy; bloods, height and weight, check chat about general health, what to expect for your surgery and anethestic, what to bring to hospital. If your healthy about 30mins all in. Good luck! I have my first meeting tomorrow with a new onc about starting rads and to check my scars and wound after surgery- feels okay, maybe a little bit swollen but no temp or hot or pinkness so think its maybe just having the drains out x

[jellytot83]

Sian - good luck for tomorrow lovely xx

Laura - well done on having completed your op

Claire - well done on getting half way on rads. I'm still to start tamoxifen as they told me to wait until after surgery.

Rosie - hugs, hope herceptin going as ok as poss.

Angela - are you nearly finished rads?

I have my pre-op assessment tomorrow so not really sure what to expect there

X

[hazza81]

Hi girls
Laurable - hope you are recovering well, nice to get the op hurdle over with!
everythingis rosie - I also did not do the arm excercises, naughty me ( though in my defence my cording just went away on its own, and I felt the stretching made it worse!)
i am also feeling the annoyance at lack of eye lashes! My brows seem to be growing back well, I am pretty sure I have dyed them by putting so much stuff on them!
I am just over half way through my rads, easy enough, but am really tired, not sure if thats the tamoxifen though. I am waking up 3 or 4 times in the night with hot flushes, they aren't really unpleasent, just annoying as can't get back to sleep! i am going for some auricular acupuncture this week to see if this helps. i have never had any alternatiove treatments before so am a little apprehensive!
Has anyone else started tamoxifen and feel like they have pmt all the time?? feeling really very emotional and want to burst into tears most mornings for the past week, cried when I was getting my rads yesterday, felt like a right idiot!
off for more rads now!
thinking about all of you!
xox claire

[Lauralable]

Hey guys that's me home from hospital, went in wed, op thur am and out mon am so not bad going. I was really scared, never been in hospital overnight before but the actual hospital experience was fine, op was okay- first in, cried going into surgery, got lots of gas before to calm me down, was under for about 5 hours all in coz took slightly longer to do thanks to my tissue after chemo or something, then I took a while to come round. Woke up with a cannual in my foot which was horrible. Back up to ward, really really tired, slept all afternoon, saw my family, felt okay apart from tightness across my chest (they cut the muscle and put an implant under it). The drains are horrific 😞 i had 3 in, 2 under the breast and 1 under my arm, really uncomfortable and sore and hard to sleep with. got 1 out sat, one out yesterday and final me out today, thankfully they didn't drain too much. It's all healing well aparently, saw it for the first time today-seems smaller than I thought and the skin also is wrinkly until they fill it more. But it's amazing how they do it. I had loads of visitors which helped 🙂 glad to be home!

[smc78]

Oh and yes Angela they are reusable 🙂 x

[smc78]

Hi girls. Well i tried the eyelashes. Its very difficult to put them on and took me 3 attempts and about half an hour to get them in the right place. They feel very strange at first but i soon forgot about them. I found this video in youtube for tips on how to do it before i tried. I did put some normal eyeliner on first like she suggests but didnt apply my eye make up untill afterwards. It was a bit fiddly but looked alright in the end. I filled in the gaps of my eyebrows with a few strokes of the black eyeliner too and have to say once i had my wig on it looked fine so i'd say definately give it a go.

http://www.youtube.com/watch?v=BMBmS-v-w5I

[stiz]

Hi everyone,

My muscle aches are better thanks, so Tamoxifen not going too bad.

I am quite tired but I think a lot of it is from travelling back & forth everyday & the fact that the appointments are different each day. I am only using aqueous cream twice a day & touch wood I am not too sore. I had my nodes removed & don't do any exercises, I think you only need to do them if your movement is impaired.

Sian, I would love to know if the lashes work as I hate the way my eyes look.

All the best to everyone, it's christmas soon, how exciting, love Angela x