February 2016 starters

[Lizzy_BCC]

Hi Shelly212, 

It is great to see that you are already getting support from our users.

I have now enabled private messages for you and you should be able to see an envelope in the top right hand screen. We usually wait for new users to post a couple of posts before enabling private messages - this is to avoid spam messages.

I hope this helps Shelly212 🙂 

If anyone has any questions or would like to enable their private message they can email us at moderator@breastcancercare.org.uk . 

Best wishes,

Lizzy 

[Warcol]

Hi Shelly
U need to enable private messages in your settInge as just tried to PM u and can't! Alternatively just tell
Me ur full name and I'll find u on FB just tell
Me what ur pic looks like lol xx Colista xx

[Shelly212]

Hi, I am post menopausal and had a mastectomy prior to chemo. one of the younger girls is having chemo first and her tumour has shrunk quite a lot even thugh she's only halfway through treatment. Will have a look for TNBC thread but don't know how to PM via this site. thanks for replying to my post.xxxxx

[Warcol]

Welcome Shelly

im triple negative as well and if u look in the threads section there's also a thread for TNBC as well! I've had 4 FEC and 2 T so far and either 1 or 2 more T to go. My oncologist said with TNBC it responds well to chemo. Have u had a scan to see if yours has shrunk. I had one after 2 FEC and it had and am due another scan this week to see if it has again. I'm due my op beginning of September. 

In regards to hair I think 4/5 weeks after finishing chemo ur eyelashes n eyebrows should start to grow back. Not sure about pigment it may be that your colouring may come back white on your head, I know I have a few greys creeping through!!!

if your interested there's also a closed FB group that I can add you to if your on FB, send me a PM and I'll let u have the details. The more support the better xx regards Colista xxx

[Shelly212]

Hi All,

First time on - wish I'd discovered this in Februaruy! 2 weeks ago had my last chemo, 3 lots of EC followed by 9 Taxol. Hair mostly growing back white, not sure how long it is until pigment starts to come back? Eyes still sore and wondering when eylashes and eyebrows will start to come back?

Not on hormone tabs or injections as triple negative nad got reconstruction and 2nd mastectomy to look forward to.

Shelly

[Cag61]

Hi Jan, 

lovely to hear from you and I really thought you'd be enjoying your grandchild by now 😄

Thank you for telling me about radiotherapy....I just have to plough through it. I am busy planning a house move at the moment. I live in a flat and it wasn't till I had chemo that I realised how much I missed a garden, so that is it, decision made to ove to a 2 bed house with a little garden round the corner from our grandson. He is so excited and planning his new bedroom. 

My husband has struggled recently, almost as if he was really strong all through chemo and the op and then suddenly everything has hit him. He hates being away from me and gets anxious...the breast cancer nurses have been good and chatted to him he is also being referred for counselling at the unit. 

hope you all have a good week. 

Big hugs Carol xxx

[Kim555pink]

EmmaJane, just dropping in from Jan starters to wish you good luck for your op on Weds. I have left breast masectomy with immediate reconstruction (silicone implant) back in December before chemo and radiotherapy. Radiotherapy doesn't seem to have affected the implant at all which is good 😊
Xxx

[Kayak Jan]

Hi all.
How is everyone doing.
Well I finished rads on Tuesday this week so that's me done! ☺ just need to deal with hormone therapy and the fallout now.
I have never considered this a journey, I choose to make a journey and decide where I want to go. I started by thinking of it as a challenge which quickly developed into a triathlon . In my case,
1. Surgery
2. Chemo
3. Radiotherapy.
During the last few weeks I have started to think of it as more of a pentathlon. Adding the extra challenges of ,
4. Loosing weight (I gained 10kilos) and regaining a level of fitness (still not fit enough to kayak 😕 )
5. Finding a way to accept what has happened and establish an acceptable new normal.
The last one will, I feel, be my greatest challenge.
I asked about counciling at my oncology centre. I was told I could be referred but the only place they do it is at the oncology health centre. Apart from being a 60mile round trip I know I cannot go back there on a voluntary basis. The panic is never far from the surface whenever I walk down that long corridor. I am sure I will find a way to deal with it all.
Carol good to see your surgery is done. You are through the worst of it rads is easily doable. I found the daily trip tedious and time consuming but the actual treatment was ok. I used E45 cream at home and used a spray version straight after each treatment. The spray was easier and quicker to use in the changing room. I managed fine up until 12 then I started with skin issues. I was given intrasite gel which has really helped. I am still using it along with E45. Basically it's like dealing with sunburn, I am at the skin peeling stage at the mo.
On ED's baby we are still waiting, 6 days overdue now. I know I wanted her to wait till I finished rads but this is too long now ☺ ! I will keep you posted.
Keep talking and letting us know how you are all progressing.
Sending lots of hugs
Jan
Sorry I seem to write such epics

[Cag61]

Hi, 

well done Emma for raising all that money and good luck with the op. It's the fear of the unknown but if you can get through chemo you can get through anything. I am waiting for radiotherapy, had chemo and op......just seems to go on and on.....just want to get on with my life now. Big hugs to you all on the forum xxx

[Sal]

Yes I agree but she sounds like she's top of her game. You're young and fit and advantages to not having to wait for another opertion on top. Gosh Emma I'm pleased you don't have to have more chemo though and you're going to get it out. Everyone is so brave and determined. I'm currently having problems getting my hormone meds as Sheffield and Barnsley are disputing who's paying!!! I'm going to officially complain as it made me cry yesterday last think I need to worry about!!
Here's to strength and getting back to normal. You're surgeon will be brilliant and here's to you! Xxxxx

[Emmajane]

Thanks Sal xxxxxxx bit nervous as having recon too followed by rads... Lots of ppl said they have waited for recon. But surgeon assured me implant is protected by muscle from LD flap. She's a leading surgeon and plastics expert so trusting what she says... I think we always have doubts in this game!!!!!! The main thing is the cancer will be out hopefully! Xxx

[Sal]

Hello all
Emma hope it goes well next week. Will be thinking of you and getting rid of that C!! out and gone!! Xxxxxxx

[Emmajane]

Hiya all! Been a while had my last chemo 2nd June only had 5 in end! The lump hadn't shrunk much so surgeon keen to operate. Got op Weds 13 th July! Left mx and immediate recon. Nervous but want it done. Then got rads once healed! X hope u are all well! Got raise for life Sunday, just squeezing it in before op! Raised £1353

[Lellie]

Hi Ali,

I am sorry you are feeling so down at the moment. I had my last lot of chemo 4 & 1/2 weeks ago and I am really starting to feel more positive. I can remember having several days after the last one when I felt really down and weepy for no apparent reason! We are all human and have been through a major thing in our lives. You are allowed to feel scared and miserable. I am sure some counselling will help and maybe getting back to work too. Try to be gentle with yourself and not do too much too fast!

Big hugs!!

Helen xxx

[Ali-B]

Hello Ladies,

I've been trying to slowly get back to some normality over the last 3 weeks since ending chemo. It has been really hard emotionally. I have been really down at times still finding it hard to digest my diagnosis and what it means to me, the future etc. I have put myself down for some counselling too and it helps but you still have to 'walk the walk' yourself, managing your fears etc. I am scared about it coming back as they say all they say that BC is never really cured which really freaks me out. I don't mean to drag anyone down so please forgive me saying this stuff. I want to be able to just get on but my emotions just seem to be getting the better of me. I am hoping to get back to work in August which I am sure will help with the 're-adjustment' to everything.

I know some of you are still suffering physical effects from your additional treatments so sending you the best of everything. 

Ali xxx

[Kayak Jan]

Hi all.
Happy to see we are all coming to the end of this stage of our challenge ☺ . X
Carol good to hear you enjoyed your holiday. I managed a couple of days away between chemo and rads. Really needed it and appreciated a touch of normality.
I am going for 13/15 rads this morning. Doing ok. Notice some blistering on my scar yesterday, told the radiotherapist and was referred to a nurse. Given some gel and due to pick up a prescription for cream today. The tiredness has not been too bad..... yet. Find if I come straight home I can potter around quite happily but if I do other things, had to go for a bone scan,trip to the dentist etc.. I get tired and need to go to bed for a few hours. Well only 2 more after today then hospital appointments finished for a while. Think I have to see onc in 6 weeks then wait for first year mammogram. Then further surgery to reduce large. Can't wait to be able to wear a bra that fits both sides!
Hormone therapy for the next 5 years. Been putting off starting but gonna do it today. Here's hoping for manageable SEs.
My next biggest challenge is to loose the 10kilos (23lbs) I have gained during this triathlon.
I am looking forward to being able to restart my fitness classes and finally get my kayak back on the sea. Have played a few games of racquet ball but too painful during rads. Sure activity increase will help with weight loss just hoping hormone stuff doesn't hinder it. 😕
I have been following our group and hope we can all check in occasionally to keep in touch and just let each other know how we are doing.
On a different note my EDs baby is due on Monday. 😀 . I am hoping she holds out until after my last rads on Tuesday ! I will let you know. 👍 .
Hugs to you all
Jan x

[Daisy63]

Hi Cag61 good to hear you had a lovly relaxing time. I am having my op on the 21st July they said I had 3 nodes showing cells. So I am going to have them removed. There going to do a lumpectomy. The pain in my knees and back are bad. I find myself crying sometimes because of the pain like you I to have arthritis I found when having chemo the pain went. It's in my shoulder as well. Why do you worry about the future? We have not put our bodies through this for nothing we will be rid of it after the op and radium treatment. I hate the herceptin injections it is still effecting my eating, but some how I have managed to put weight on I not pleased with that. 

You take care

sue X X X 

[Cag61]

Hi Sue, 

i have been to Jersey for a lovely break with my husband. .....so needed it. It is 7 weeks since my last chemo and 2 weeks since surgery. Sue, I was lucky as my lymph nodes were clear, they sampled 4 I think....seeing consultant tomorrow. I have had dreadful pain in my left knee and aching in my right. I do have arthritis anyway but it seems to have got worse since the chemo. I am waiting to here when radiotherapy is starting. I have days when I get very tearful and worry about the future, my husband has been the same so I have suggested to him that he speaks to the bc nurse tomorrow on his own. I suppose we do forget how it affects our loved ones. What op are you having Sue, and are you eating again??? 

Jan, I hope all is well with you, and sending my love and positive thoughts to all of you on here. 

Carol Xxx

[em32]

Hi sue. So far I've had 3 herceptin injections and had lower back and thigh pain but I put it down to the chemo I had at the same time. I have my 4th on Friday so will keep you posted x

[Tulily]

Hi sue.

I'm not on herceptin so can't answer your question, sorry you've not had a reply.

I finished chemo three weeks ago today! It's such a relief that I didn't have to make that dreaded journey today then wait for the explosion!!! I start radiotherapy next Thursday, every day for four weeks (except weekends).

Hope everyone who has finished is beginning to feel better and get stronger and to everyone coming to an end - ur nearly there!

[Lellie]

Hi a Sue, it has gone a bit quiet on here hasn't it? I was warned that I might have SE after the Herceptin on its own but so far they have been minimal. I felt a bit wobbly on Sunday and Monday but improving today. Went to have my post surgery bra fitted today and actually drove myself which was great. Since I stared chemo I haven't driven as have been feeling vaguely drunk! Hubby is ex police so you can imagine what he said to my suggestion that I drive !!

I have pre op assessment on Monday and then op on 15th July. Just looking to buy some front buttoning pyjamas for easy access. I have been told that Cyberjammies do some nice ones.

Fingers and toes still a bit tingly and still feeling tired. Was told by the breast care nurse this morning to be kind to myself and listen to my body. I think that is good advice for all of us!

Hope you are all coming to the end of the nightmare called chemo? I am told that anything else that we have to go through is a breeze in comparison!

Take care Sue and all you ladies. Xxx

[Daisy63]

Well ladies how are we all doing, I was waiting for a reply to my last question. I know we are all either off chemo or nearly off but I still like to know how you are all doing. 

I am finding the herceptin giving me SE but don't know if it's from the chemo or the herceptin. Had to have another ct scan last Monday as they found I had a swelling on my adrenal gland, had a phone call yesterday from my breast cancer naurse she told me it was nothing to worry about. 👍🏻 now I am just waiting to go and see the clinic for my pre op check on the 14th July then hopefully my op on the 21st July. Be glad when all this is well and truly over. 

Please let me know how you all are getting on.

sue X X X X 

[Daisy63]

Hi ladies I am on herceptin injections this is my third one, I am finding my knees and lower back is painful, is this due to the injection?

love to you all

sue X X X 

[em32]

Hi ladies. I had picc line out tonight whoop whoop feel like I'm moving along now. Rads start next week soon it'll all be over!!

Have a lovely weekend xx

[Sal]

Hi Ali
It's Exermestane tablets and goserelin injections. I rang doctor today he said keep eye on my hands. Not overly helpful. I rang bc nurse too who was far better but said same keep eye on swelling. Hate tablets just felt like getting over chemo! Thankyiu for reply xxx
Hope you're ok Ali. Xxxx

[Ali-B]

Hi Sal, 

What hormone tablets and which injections? It might be worth calling the BCN/oncologists about the swollen knuckles.

Ali xx

[Sal]

Dear all
Is anyone struggling with hormone tablets and injections? Knuckles swollen can't get my rings on.... Feel like a creaky old woman pain keeping me up! Anyone had been offered ovaries removed? Xxx

[Daisy63]

Hi cag did you have your nodes removed?

sue x

[Kayak Jan]

Morning all 😁
Not checked in for a while but have been reading your posts when I can.
Carol glad the op went ok.
Well I am off for number 5 of 15 rads this morning. Doing okish so far. Skin holding up but some upper chest pain especially in my non BC side! Weird. Will ask about it again today.
Finally seem to be over the majority of chemo SEs and my hair is beginning to grow very slowly.
Hope you all have a good day.
Sending hugs
Jan x

[em32]

Hi ladies. Off for my planning session tomorrow bit nervous to be honest not looking forward to the tattoos!
I had lumpectomy before chemo and just have rads to go 20 sessions having the boost because couldn't get cleat margins on one side as no breast tissue left not got my date through yet hoping to find out tomorrow when I'm at the planning session.
I'm so tired my sleep pattern is all over the place I sleep when I need to so not always able to sleep at night. The smallest of jobs wears me out and next thing I know I've woken up on the couch two hours later and can't sleep that night!

[Sal]

He'll ladies sounds like everyone gas things planned and dates for ops and rads. There still a few ladies having chemo too so we're all a little closer to normality or whatever that is now we have gone through all this! Sue hope you're ok with your oh???? Last thing you need to worry about on top of trying to keep your head in order. I've had lumpectomy and modes removed. I have 15 sessions then 5 as a boost - concentrating on the spot were the cancer was. Xxxxx

[Cag61]

Hi Sue, 

i had my op....lumpectomy last Wednesday, nodes were clear. I have so far had no pain and compared to the chemo it was a lot easier !!!! I'm sorry you're having a tough time, this bloody 'C' takes a toll on us both mentally and physically. I was very tearful when chemo ended, relief but then knowing I still had the op and radiotherapy to get through. Do you have triple negative breast cancer ?????? The side effects of chemo will slowly go, I am back eating normally again and can actually taste food. I don't think I will ever be able to eat fish fingers, ginger nuts or choc ices ever again !!!!!!!

sending you a hug and hope life improves for you......be strong xxxx

[Tulily]

Hi sue, yes as sissylw said, standard is 15 with extra 5 in some cases (in mine due to me being a "youngster" (apparently)), every day except weekends. My eyes are the same, quite sore, driving me mad as can't wear my contact lenses. Oh dear, you tell him Sue!!

[Sissylw1980]

Hi daisy, glad you've got a date sorted. Rads is usually 15 sessions on a daily basis for three weeks (with weekends off). Some people have booster sessions, think it depends on if you've had a mx or lumpectomy xx

[Daisy63]

Hi ladies, I have good news at last. My operation is planned for the 21st July after a lot of messing around with my appointments. Lumpectomy and node removed. Then radio therapy. Not sure how many radio therapies you have I for got to ask. Does anyone know? And how often you have it. The list of things we have to go through seems to go on and on. Still got a bitter taste in my mouth eyes still streaming. And tired. I must have had a down day on Sunday as I told my old man to pack his bags and go, he has been talking to me like a pig and have had enough. I was crying he never apologised. You try and eat coco pops while crying lol lol it don't work. 

I HATE MEN.

love to you all

sue X X X 

[Lellie]

Hi Ali,

Don't worry the depressed feeling will go. I couldn't understand why I was feeling so weepy when my last chemo was over. I think you feel that you should be swinging from the rafters but you just feel rubbish instead! I am now now two weeks past last chemo and things are really starting to pick up. Hang in there, you will get through it and be out the other side before you know it.

We have all been through such a lot and all deserve gold medals!!

Hugs to all xxx

[em32]

Ali the depressed feeling will pass I had a day like this a couple of days ago. It's a strange feeling we should be happy it's the last one but we have to deal with these cr***y side effects. Once we've got over them I'm sure we'll all feel better and ready to celebrate! My celebrating is going to start tonight 8 days post chemo actually feel like a cheeky drink or 2! 🍷🍷
Sending hugs to you all we will get through this!!!

[Ali-B]

Hello Girls,

I a couple of days post last chemo and feeling incredibly depressed. I can't believe just how down I feel and it's so hard to see anything uplifting. I am very very bitter and angry and feel my life has been so impacted that I don't know how I'm going to get through this other side. I am supposed to be relieved, happy it's over but I don't know what to think. 

I feel so so lost 😞

*sob*

Ali xx

[em32]

Thanks. Feeling slightly better today backs still really painful!
Retiring back to bed for the day only place I'm comfy!

[Ali-B]

Hi Em,

The numb fingers sound like the neuropathy you can get with the T, I'm confident it will pass. Cooling the hands helped me. As for the PICC removal, it was sore getting the clip out but the tube came out no bother. Maybe ask for a 'local' if you are able to. It's good not to have it anymore!!

Ali xx

[rosie14]

Good morning ladies congratulations on reaching the end or nearly the end of chemo! You will find your taste buds will return and your appetite increase also your fancy for the odd 🍷🍷😉.
Goodbye to complain, white bread , rice, green tea or the other end of the scale prunes, go cake and All bran! Welcome back to feeling more like you.
Good luck with your ongoing journey you have done the hardest part!

[Daisy63]

Hi em32, I have found my last one the worst. I am 2 weeks past my last one and have felt bad all the time, like you its my back and hip and legs. The only pain killers that seemed to work for me were co codamals. I have not eaten a full meal now for 3 months my taste buds are gone I get fed  up with not eating I am living on complain food replacement meals. Keep going your young and fit you will be ok soon. I know we get a bit fed up with hearing this but your win through in the end. 

Sending you hugs

sue x x x 

[em32]

Well I spoke to soon. Se must have read my last comment and thought "oh we're not to bad this time are we not I'll show you!" Maxed out on pain killers and still in agony the pain in my back and hips is driving me crackers the hot water bottle is helping but now I'm sweating because I'm too hot luckily no temp! And then the tears start because I'm just naffed off with it all I know it's the last one but it's still s***! Fed up now can't sleep!
Sorry for the rant hope everyone else is doing better than me xx

[em32]

Hi ladies. Nearly a week since my last chemo and Se this time seem to be better. Touches wood. Has any one got numb finger tips it's a new Se for me feels really strange!

Ali how was the picc removal still got mine?

Here's to a good week ladies xx

[Daisy63]

[Sal]

Yeah good stuff Lellie brilliant news! Xxxxx

[Warcol]

Fantastic news Lellie, so so pleased for you! Colista x

[Lellie]

Morning All, GOOD NEWS!! I had a check scan and mammogram yesterday and the tumour has gone! 

Can't quite believe it! At least it shows that all those traumatic weeks of Chemo were worth it.

Saw the surgeon and my op will be on 15th July with rads once all is healed so still a little way to go but I feel that the worst us behind me.

Just waiting for my energy levels and taste buds to come back to normal. Swear they gave me extra Docetaxol in the last dose!! Spent most of last week in bed, but that is over now and things can only improve.

Hope you are all well and coming to the final doses.

Hugs to all xx

[Ali-B]

Morning ladies,

Last chemo yesterday and PICC line out, glad and relived to be on this side of this journey. Taste buds starting to dull and it's all a bit 'loose' in the No.2 area 🙂 

No rads for me so just tamox now, but I must admit to feeling a sense of 'loss' I must be bonkers!!

🙂

Ali xx

[Daisy63]

Hi it's count down time lol lol X X