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December Angels 2013

Re: December Angels 2013

Great to hear how everyone is doing. 

 

I have eyebrows coming back, but no sign of eyelashes yet!  I cold capped during treatment so have some new hair coming in with the hair that survived chemo. I am hoping to go for a short style in a few weeks but at least can "get away" without the dreaded wig!

 

Have had my 6th and 7th seroma drains since I last posted - am having to have it done every third day at present. Both the consultant and BC nurse say the cavity is healing so hopefully it will slow down soon. 

 

Jules xx

Re: December Angels 2013

Kaz16 -soooo funny,

I have been lucky regarding my eyebrows and eyelashes as I did not lose them completely just thinned a lot so I was still able to apply mascara and touched up eyebrows with pencil. My hair has grown in (salt &pepper), mostly salt lol but very short and a couple of small areas where its really thin. I hate my wig and have refused to wear it the last couple of weeks so just been wearing hats when i go out.

Today I thought to hell with this I am going out without a hat and if people feel uncomfortable then that is just tough so I got to front door being very brave and as soon as i opened door I turned back round and picked up my hat lol.

Maybe I will be brave enough in next couple of weeks (hope so).

 

Hope everyone is doing well.

Wyn X

Re: December Angels 2013

How are you doing SJB? You are certainly lucky that you have no arm pain. I went to physio today and it is definitely the nerves causing my problems. At least it isn't cording but I have to keep taking the painkillers and doing the exercises and it will take time to heal. I will find out on Thursday if it means I can't have rads yet as I don't have full mobility of my arm. I am keen to be able to drive again and feel more normal.

Re: December Angels 2013

Kaz16 - hilarious! Can sooo relate! My eyebrows are growing back, I have two dark smudges above my eyes where they are waiting to poke thru the skin! Looks daft as anything! !

Re: December Angels 2013

hi kaz-16, oh you did make me laugh! i can so relate to your post, if only everyone knew what its like, and setareh i take an hour to get ready too i even take time to do simple things like hanging washing on the line incase the neighbours are watching haha and im hoping to see some hair regrowth soon i cant wait!!! xx

Re: December Angels 2013

Me too Kaz 🙂 it takes me one hour to get ready before I go out 🙂 people have no idea what we are going through. I'm hoping to get my hair, eyebrow and eyelashes back in a few months. I haven't started radio yet...

Re: December Angels 2013

I went out on Saturday evening to a sixtieth birthday celebration, my first big social event since Xmas ......
Wig on, eyebrows drawn on, eye liner to hide no eye lashes, nail varnish applied to toe and finger nails to cover my brown nails, pad in bra to protect very sore nipple following radio therapy, foundation to cover rash on chest, high heels on but have no feeling in my toes etc etc .enter pub to comments " You look well " . I smile and reply "Yes great " ....You have to laugh at the whole situation sometimes .

Re: December Angels 2013

Jinny, to me now, breast cancer is just breast cancer. Whatever type you have you will get the best possible treatment to beat it. Don't google it, stick to this site and get good honest advice. There are some real nutters out there that will write any old rubbish. Listen to your medical team first and foremost. We all know exactly how scared you feel. I got a lot of what seemed to be bony arm pain after biopsies, scans, surgery etc as I'm sure most on here did. But it was simply the investigations messing with nerves, muscles and your mind. There is little any of can say to ease your mind, but sending you love x

Re: December Angels 2013

Just sending you all a bit of rainy day love. Don't post much now but have a read most days. You're all doing really well. Hang in there ladies. What a journey we've been on xxxx

Re: December Angels 2013

I have some fluid building up along the scar, but not a lot. The surgeon was happy to leave it and see if it disperses into my body naturally. My BCN said that if it hasn't dispersed before I start radiotherapy, she'll aspirate it for me, but we can leave it for now.

 

I thought I would get a lot building up because of how much was draining each day before they removed the drains, but I guess I've been lucky.

 

 

Re: December Angels 2013

Wow SJB this is fantastic news! I'm so so happy for you 🙂
I just started tamoxifen and still waiting for radio appointment.
Good luck everyone with next part of treatment

Re: December Angels 2013

Jules, good luck with the seroma drain, it can only improve, My rads start on 9th June,it feels so strange not having any hosp appts over next two weeks so best make the most of it lol.

Petal - hope you are feeling better

Jinny- you will get the best treatment from your team so hang in there.

 

enjoy the weekend everyone

Wyn x

Re: December Angels 2013

NO it nit triple negative its ductal mixed with something like microphillys i cant remember the name but i think if its out does it matter whay type it was? I also have pain in bones of arms i dont know if worried because of the amount of nodes involved

Re: December Angels 2013

SJB - excelleng news! I am so pleased for you and I hope you enjoy your celebrations!

 

Back to the hospital today for me for my 6th seroma drain!  Let's hope it starts to slow down soon!

 

Have a great weekend all xx

Re: December Angels 2013

SJB - fantastic news, so pleased for you and quite right to go to local pub with OH to celebrate.

Jinny - if you are referring to Triple Negative please dont read the negative stories it will drive you crazy and don't google.

Triple neg - only means that it is not receptive to hormone meds or herceptin so would be pointless giving these meds but has been known to respond very well to chemo, if it does not return in first 5 years then its unlikely to ever come back.

I have been diagnosed with Triple neg and after chemo and surgery i was told by my surgeons registrar my outlook was excellent.

Your BC team will look after you throughout treatment and beyond for years to come,so as i said before hang in there and try not to focus on the negative things you read as there are probably many more positive stories.

 

Take care

Wyn x

Re: December Angels 2013

I am very pleased to report to you ladies that I was told today that the results of the tests after my mastectomy could not have been better.

 

When I was first diagnosed, back in December, I had a 50mm invasive ductal carcinoma and several infected lymph nodes. My consultant decided to throw me into neo-adjuvant chemo,and that zapped the cancer completely. So by the time they removed my breast and all the lymph nodes, there were no active cancer cells left in the removed tissue.

 

I feel so good tonight. My husband and I have been over our local pub celebrating. This is going to be a very good weekend. Woman LOL

Re: December Angels 2013

Hello Jinny2611

 

If you would like to talk things through with a member of our helpline staff please give us a call.  The staff are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

best wishes

June, moderator

Re: December Angels 2013

feeling shook up again as my cancer has a mix with another cancer i read about it and its prob one of worse ones to get with poorer outlook im just torchering myself day after day

Re: December Angels 2013

Jules, you are doing really well and have encouraged lots of others. Hopefully you will feel more comfortable soon.
After the euphoria of finishing chemo and having the surgery I don't understand why I feel quite low even though I had good news yesterday. I suppose I didn't expect to have the pain in my arm and I actually think it is cording as I can feel something there when I can bear to touch it. I am going to have physio on Tuesday which should help. I've also started on Letrozole. Anyone else on that?

Re: December Angels 2013

SJB - really good luck to you today. I am struggling with mobility in my arm - feels like everything is so tight still. I think mine is still due to seroma - I am having to have it drained every other day. It's not a medical problem but rather a nuisance in getting to and from hospital, but does restrict movement in my arm and therefore exercises. 

 

Petal - great news - really thrilled for you. 

 

Jinny - so pleased you have spoken to someone. I hope you get a little more encouragement from knowing more. 

 

Wyn - I've lost track of where you are - do you have a date for rads yet? I know you are a few weeks ahead of me - I am not due to see the oncologist until the 5th so suspect I won't start for a while because of the seroma issues. 

 

Love and hugs to all xx

Re: December Angels 2013

SJB - Good luck with your results.

Jinny - So glad you have spoken to someone and now feeling a bit calmer, you will get stronger each day  Onwards and upwards.

 

Take care everyone

Wyn X

Re: December Angels 2013

I mean sjb x

Re: December Angels 2013

Hi i have spoke to 2 people today including BN  went through my report a bit my cancer is 2 different ones mixed together also spoke to another lady who had 21 nodes involved out of 25 and doing well to date. I need to have my scans now so no doubt will worry just waiting for call to start chemo aswell feel bit more calmer and i suppose nobody ever wants to go through it . Good luck snb xx

Re: December Angels 2013

I'm off to hospital this afternoon to get the results from my mastectomy op 2 weeks ago. I feel so fit and well. My arm is almost back to normal, and I have had no pain. I have just been for a lovely walk across fields and through woods with a friend.

 

Life is wonderful. Woman LOL Heart

 

Jinny, talk to someone today PLEASE - call the helpline here or your BCN, but don't continue to suffer in silence. Please let us know when you've spoken to someone.

Re: December Angels 2013

hi jinny just to let you know i was in exactly the same frame of mind as you just 7 months ago i couldnt eat sleep or focus on anything other than the negativity of my situation, i felt like i was in a tunnel with no light at the end of it however somehow through the support of family and friends and reading this forum, then day by day that light at the end of tunnel grew and i am now reaching the end of my treatment and im ready to live life to the full again,please hang in there i know its a shock and hard to take in but believe me when i say you will get through this and find the light at the end of your tunnel too xxxxx

Re: December Angels 2013

hi Petal, that was excellent news so happy for you but sorry to hear about your arm I totally understand the pain you must be feeling. A couple of years ago i slipped a disc in my neck and it had entered the spinal coluum damaging nerves,(medical term Cervical Radiculopathy)  the nerve pain was intolerable and i could not move my arm at all. I was giving strong meds to help pain but they were not doing any good. My occupational health doc from work advised me to go back to gp and ask for GABAPENTIN OR AMYTRYPTYLINE as they are most suitable for controlling nerve pain, meanwhile i had ben offered surgery by neurologist but refused due to risks involved. I eventually went on to amytryptyline meds and my condition had greatly improved within weeks.hope this is helpful. Why do us women get the short straw lol. take care.

 

Jinny please contact someone today maybe your breast cancer nurse can go through your pathology report with you and help you with all your fears, hang in there.

 

Take care

Wyn x

Re: December Angels 2013

I forgot to mention not only was it 2 tumors 28mm and 25mm they were both a different type of cancer my news just got worse then when he said in 9 lymph nodes and grade 3 stage 3 ive been awake all night i just dont know what to do

Re: December Angels 2013

Thanks for asking, Wyn. I'm delighted to say it was very good news as there was no active cancer visible in either the breast or any of the 15 lymph nodes they had removed. I am relieved and obviously very happy about this but this is tempered by a bit of dismay about my arm. The surgeon said it was 'unfortunate' the main nerve had been caught by the drain. It is hoped that in time it will get better but nerves are the slowest to heal and the best thing is to refer me for physio to try and get my arm moving properly as soon as possible. I know that in the grand scheme of things this is minor compared with the cancer but I am a bit worn down by the constant pain. I want to get off the morphine soon and get mobility so I can drive again as I keep having to rely on other people to get me to appointments etc. Sorry, didn't mean to moan, I know I am luckier than some and I WILL learn to manage this part and hopefully it will all gradually improve. I can still cope with living on my own and doing most things for myself. I think also I can't quite believe the good news yet!

Jinny, I hope you are feeling stronger today. Do you have a good friend or family member you can talk to? Don't panic, take a day at a time and you will surprise yourself that you can get through this. We have all struggled at times and we are all giving each other support. Hang on in there!

Re: December Angels 2013

Hi petal, how are you hope you got good results today.

I went for planning appt for rads today, had CT scan and 3 lovely tattoos, always wanted tattoo (haha) its a true saying be careful what you wish for lol. the appointment did not take long and the nurses were really nice so start rads 9th june.

 

Take care everyone

Wyn x

Re: December Angels 2013

Really good saying that Wynn, I like that.
Please take help and advice from the helpline experts Jinny, my oncologist told me that I had a good attitude and it would get me through it. I really beleive negativity drains us but nearly everything has a positive element within it. Let them help you find the strength within you to face this. It is there you just need some more balanced info to reassure you. Good luck x

Re: December Angels 2013

Jinny, as SJB said please speak to someone from the helpline or GP,BCN or a councellor to help with your emotional state at the moment.

If the tumours had not been totally removed then it would be my understanding you would need further surgery if they did not get clear margins.

We have all had really bad days when we thought we could not take this anymore but somehow found the strength to carry on and beat this and YOU WILL TOO.

Like RO21 I have allowed this horrible disease take over my life the last 7 months and dont intend to let it take any more.

 

I remember when I said to an old friend a few years ago "it's a beautiful day today" and he replied "everyday is a beautiful day if you wake up to see it" and that has stuck with me so despite going through this horrible journey everyday has been a" beautiful day" and I intend to wake up and see many many more.

 

Sending great big ((((HUGS))))

Wyn X

Re: December Angels 2013

Hi jinny

 

As SJB said, please do give our Helpline a call.  They'll be able to offer you emotional support as well as practical information.  The opening times are 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

 

Take care

 

Very best wishes

 

Janet

BCC Moderator

Re: December Angels 2013

Jinny, have you rung the helpline here on the BCC site? You really should. They can talk this through with you. It is nowhere near as serious as you are convincing yourself. 

 

Please call the helpline and talk to someone there. x

Re: December Angels 2013

im so scared just so negative it just worse than i thought 2 tumors one was 28mm one was 25mm i asked if he got it all out he sed he removed everything he could see i just wanted to hear something bit more how can i do this feel so weak and negative

Re: December Angels 2013

Jinny, I had my mastectomy in October and cancer was in 12 of the 16 lymph nodes they removed. I've since had 6 sessions of chemo and 15 sessions of radiotherapy. I'm now back at work everything is healing well and I'm getting my life back (going on holiday in 4 weeks) and planning some exciting things for next year. The scans showed it hadn't spread further and as regards the cancer coming back well I could get knocked down by a bus tomorrow so until/if it comes back I'm not going to waste my energy on it, I've given it the last 7 months of my life and that's quite enough. My sister died at the age of 46 just after I started chemo (not related to cancer) & so i want to make the most of my life & not waste a day.

I know it's not easy but you can do this!!!!! Sending you love & hugs, ❤️ X

Re: December Angels 2013

We all die one day, Jinny, but none of us are intending to die any time soon.

 

Two weeks ago I had all the lymph nodes in my left armpit removed, when I had my mastectomy. Tomorrow I get the results from the operation. I do not expect to hear for one moment that I am "going to die".

 

You need to go and talk to your GP. You can't go on like this. It isn't good for you. You will make yourself ill. You need to be positive to cope with the treatment that you will get to keep you alive. Please listen to what we are all telling you. x

Re: December Angels 2013

had results so bad stage 3 in 9 lymoh nodes im in a mess shock cant believe im gonna die

Re: December Angels 2013

Hi Jinny

 

Please stay positive and use everyone here to help out - we all have from time to time and it helps so much. 

We have all had our ups and downs but the Forums are such a strong method of support and friendship. 

 

I've found it so helpful to read everyone's stories and successes - it helps hugely. 

 

I was diagnosed end of November 2013 and started chemo on 13 December. That's not so long ago and I am now through chemo, surgery and waiting for rads. I am also on Herceptin and will be until the end of Feb 2015. My care has been excellent and I have been looked after all the way. 

 

Sending hugs and best wishes, Jules xx

Re: December Angels 2013

Thank u for the positive stories i just think if didnt have node involvement i wouldnt of been as panicky i know people do get through it but it scarey to think how many of us r walking around with this thing and not aware i wouldnt of been due mammogram for 6 more years its alll just to much and not worth thinking bout hope everyone takes care and good luck with treatment x

Re: December Angels 2013

Hi Jinny, I know about the fear of unknown but wyn is right, our medical team are looking after us. I just saw my oncologis for next step. I'm starting new treatments to reduce the risk of cancer coming back.
Radio for 4 weeks
Herceptin for one year
Tamoxifen for five years
If cancer doesn't come back for 5 years, it might not come back again. Doctors know what They are doing and how to look after us, please don't worry. I know it's easy to say....
Take care everyone xx

Re: December Angels 2013

Hi Jinny, I am so sorry you are feeling this way whilst waiting on your results,the waiting is the worst part,we have all been there so sending ((((Hugs)))) to you. Feel free to shout,scream and cry on here cos we are listening. Please try not to focus on negative stories ( I know its hard not to) but every one is different. Your BC team will give you the best care and treatment and once you know treatment plan you will feel better.

 

I also thought I will share a couple of positive stories to prove its not all doom and gloom.

My cousin was diagnosed 24yrs ago with lymph node involment and had a double mastectomy - she is still living life to the full and enjoying her kids and grandchildren every day.

 

My sister was diagnosed 19yrs ago also with lymph node involvement and has been also living life to the full although she was diagnosed almost 2 yrs ago with a new primary in other breast but again has gone through treatment and still enjoying her life again.

 

I am now going through treatment and focusing on getting my life back and you should too, you have a lot to live and fight for and You Will do it

 

Sending Hugs

Wyn x

Re: December Angels 2013

Hello Jenny2611

 

This must be a very difficult time for you, please feel free to call our helpliners for some practical and emotional support. Calls are free and lines are open now and normal hours are 9-5 weekdays and 10-2 Saturdays on 0808 800 6000.

 

Best wishes

June, moderator

Re: December Angels 2013

Everything i read with lymph node involvement always seem to get secondries 5 years later i looked at old posts frightened myself more most had secondries and some passed away its frightening and i wish this wasnt real how the hell do i get through it with so much negativity in my mind soon as kids went to school i just broke down again still sat in pjs feeling like ive never felt in my life

Re: December Angels 2013

Jinny, it's easy for me to say don't panic but I do understand as I have had many bad panic attacks in the past. I can now control mine by practising breathing - breathe in counting 123 slowly then hold, counting 123 again, out with 123 and hold with 123- it really works as you concentrate on the counting and calm down.

I have had my chemo before my op (also with lymph clearance and I am HER2+ as well) and I can tell you it is ok. Yes, there are side effects but these can be dealt with as and when they happen. No, it isn't a walk in the park, but every cycle you have is getting nearer to being well again. With the support of people on this site you WILL get through. It won't always be easy but we are always here and you can rant as much as you like, we've all had our fears and worries. Once the chemo has started and you know what you are dealing with you will cope better. You are not alone!

I get my results on Thursday too. Good luck. Petal x

Re: December Angels 2013

Had my op and full axiallry clearance get results thursday im in a very bad way at moment i know theres lymph node involment my panic attacks are so bad just cant get the thought im going to die out my head everything seems so negative im so scared of starting chemo and everything that comes with it im living a nightmare ive come on here to rant i dont know what to do

Re: December Angels 2013

Let us know what they say about the pain, Petal. x

Re: December Angels 2013

Thanks everyone. I am on paracetamol, ibuprofen and liquid morphine which is why I didn't think it should all still be so painful. I definitely did have a nerve trapped which is why it was excruciating when the drain came out, with burning pain flooding down the arm to my fingers, so I knew it would take a day or two to settle but I am worried because I can't use my arm much at all and it hurts even when I am just sitting still. I am really trying hard with the exercises because I don't want to get lymphoedema but can only do them if I am full of painkillers. I will phone someone in the morning (not sure who yet) but I have to go to the hospital anyway for pre chemo checks as I am due Herceptin jab number 2 on Tuesday. At least I should be able to get someone to change or remove the dressing from where the drain was and see if it looks ok. The wound from the operation is now uncovered and is healing really well and I am pleasantly surprised by how the breast looks especially round the nipple as the surgeon took care to stitch very neatly. I thought I would look very lopsided but the "dent" is more next to the underarm than on the boob or in the underarm. I am hoping I won't need another operation to remove more tissue and I will find that out on Thursday when I see the consultant.

Re: December Angels 2013

Hi Petal

 

I hope you are in less discomfort now. My drains came out the day I was discharged from hospital. 

 

Still have a large seroma; it's massive!

 

Love and hugs, Jules xx

Re: December Angels 2013

Hi Petal I had my drain out a few weeks ago and I thought it was sore. The surgeon said some women loose all feeling under the arm but obviously you still have feeling there. I think it's normal for some women to feel pain and discomfort up to 6 weeks after surgery. I still feel some pain and discomfort, I had surgery on 23rd April. xx

Re: December Angels 2013

I'm afraid I can't help you either, as it didn't hurt to remove either of my drains and although the area is a bit sore, it doesn't hurt. I can touch it without wincing.

 

I can only guess that you had a trapped nerve in there. They say the nerves can be susceptible to pain if they get moved when the lymph nodes are removed. I have really been lucky as nothing like that has happened to me so far.

 

I would also say take pain relief, but if it gets too much call 111 over the weekend and get someone out to you if necessary. If you can hold on though, leave it until Monday then call your BCN. good luck x