I’ve been home from hospital almost a week now since having a right mx and 12 lymph nodes removed. I’m still feeling really weirded out by the whole thing but doing my best to try and reconcile myself to the new look me. I’m very sore and finding it so strange not having any feeling under my arm - washing is a very surreal experience at the moment!
Today I got the results from most of the tissue tests and was told that half the lymph nodes removed tested positive for cancer but my breast area was considered to be now cancer free. As I had several different areas of cancer in my breast the result tumour size came to nearly a third of the overall mass of my breast, which was a little scary to hear (even tho’ I’ve small boobs!), but at least it’s all gone now. Plus the surgeon was 99% confident of my not needing any further surgery to the area - good news.
I am waiting for an appointment to see the oncologist to sort out starting chemo. It looks like I’ll be doing the first cycle just before Xmas, not something to look forward to! I won’t know until I see the oncologist whether I am HER 2 positive because the tissue had to be sent off for further testing, but I’m guessing she’ll know all about this when I get to see her.
I’m finding the prospect of chemo rather daunting because they are pretty sure I’ll lose my hair which is going to feel very strange for someone whose hair is almost long enough to sit on. Plus whilst you can disguise the effects of a mastectomy it’s not so easy to disguise hair loss - it’s a lot to take in.
Once again BT is providing us with terrible broadband service so if I disappear for a while, it won’t be for the want of trying to get online!
It is good news that you should avoid any further surgery, bummer that your lymph nodes were involved - but we’ll be facing chemo at about the same time so we can egg each other on through it. (I found out today that I had one node involved, the tumour was grade 3, so chemo def. for me too).
Losing your hair must be a daunting prospect for you, with such fabulously long locks - have a look online at what is available in wigs - I know it’s not the same at all, but there are some beautiful long styles, that may just help you feel a little less alien to yourself? Worth looking - and worth finding somewhere local to you where you can try them on and be advised by someone who knows what they are talking about.
Being monobreasted does take some getting used to - I’m discovering how few of my old t-shirts actually look ok now I only have one breast and zero cleavage - thank god it’s winter and I can cover up - by the summer I may have got the hang of dressing appropriately! I have found it helps to keep on looking - the dressing came off today, and I peek down my front at every opportunity to try to desensitize myself… not quite working yet, but it will. My OH’s first reaction was that my remaining boob just looks stuck on - that the flat side looks strangely ‘normal’, and I do sort of know what he means. It def. looked neater when covered by a clean white dressing though - he hasn’t seen the stitched reality yet.
Just hang on in there - even the very weird has to approach normality with time - you will get there. Just remember, that you are no less beautiful or extraordinary than you were before bc - and you will come through this even more glorious and strong - and all woman.
Thought I would join in wishing you my very best! I found out today that my chemo will start next Friday-so am also starting around the same time! I had no nodes affected but because I am 26 they are hitting me with all they have and I’m having 6 cycles of FEC75. I have my wig appointments booked for 1 Dec so enough time before it all falls out to get sorted-Sophie’s right-wigs are amazing now - I’m consoling myself with the fact I uses to have human hair extensions which nobody noticed but I was always worried about how seamlessly they joined-now I can have perfect hair (albeit not actually mine) and nobody will be able to tell the difference! As for your op, I had double msx with recon so I have nothing original left to compare to but if it helps it’s strange how quickie things become the norm!
Please keep in touch during chemo as sounds like I will be a little ahead of you and any tips I learn I will share-the chemo unit today was absolutely fine and has made me feel much better!
I start FEC on Mon 29th, so can I join your thread please? All the best to those starting on Friday. Hopefully you’ll be feeling better by the time I start 4 days later.
Looking down / in the mirror isn’t too much of shock now but I still consider that my left breast has been amputated. I came home from hospital without dressings as I was glued rather than stitched. I wish I could have had a recon at the same time. I have to wait until after RADS, which is after chemo, so a long way off.
Nottsgal, my recon will be at the end of it all, too - just in case I have to have rads (not sure I will), so it’s still a long haul for me too. My dressing came off for good on Friday, though I’d seen the wound before a couple of times. Catching sight of it in the mirror still makes me pause and stare, but looking at it down the front of my vest top (the built in bra very comfy and makes it look outwardly like I still have two boobs), the flat expanse is beginning to look ‘normal’.
You’ll be starting chemo ahead of me and Nymeria - we’ll have lots of tips by the time we begin! (But I won’t be so smiley when we’re all at the far end, and you guys finish a cycle or two ahead of us!!!)
I’ve just had a call from the hospital asking me to go in to see the oncologist this Thursday. All rather quick but I’m not complaining!
Looks like we’ll be able to pass on tips to each other as we get through it all - always a good thing!
I’ve added each of you to my contacts list so that we can also stay in touch private too if we want to.
I had a bit of a wobble over the weekend but I’m feeling a bit better today. I’ve rediscovered my stoical streak for the moment, let’s hope I can keep it!
I understand what you mean about recon and the time involved - it just seems so far away at the moment doesn’t it? I knew there was no chance of me having recon at the same time, partly because of the type of cancer meant I was pretty sure I’d need further treatment but also because my hospital doesn’t do that type of surgery.
On Friday my BC nurse said that I should think of 2011 as ‘treatment year’ and to think in terms of hopefully having recon early the year after and have that as something to aim for and look forward to.
For me at the moment I just wish everyone around me would stop telling me to have my long hair cut really short right now. It’s irritating - long hair is part of who I am and sadly I don’t have the face/head shape to carry off short hair well, so I want to focus on doing the things that will enable me to still feel and look like me, if that makes sense? I know that folks mean well but at the moment I am still coming to terms with the loss of my breast without having to deal with another change to how I look as well.
Keep the stoicism up! The wobbles are just part of the course but I always find I feel I’ve moved on a bit and accepted things more after a small wobble and hope you find that too!
It helps me to think how quickly this year has gone and to know that, this time next year, it will be my 27th birthday and treatment and final op to change my expanders should be behind me-time flies and I’m wishing the year away with you!
Hi girls,I’m just back from my first FEC session and and reading through all the posts to keep me occupied. I’m having the chemo first and then surgery after and also radiotherapy. I suppose that means that reconstruction doesnt take place until after radiotherapy. i was hoping to have reconstruction at the same time .
I was just reading about your hair Nymeria. I decided to get my hair cut a bit at the weekend. It wasn’t as long as yours but was longer than shoulder length. I spent all Saturday evening in tears then and was sorry i’d done it. Though when i washed and dried it the next day myself it was a lot better.I had made up my mind not to use the cold cap but i couldn’t quite come to terms yet with the thought of not at least trying. it wasn’t bad at all really. The first ten to fifteen minutes are uncomfortable but then its ok. You just need to do what you feel is right for you at the time.
Wishing all of you all the best.
Polly x
Nymeria - hang onto your hair as long as you possibly can - it is your decision if/when to cut it! Friends may be well meaning, but why torture yourself with short hair before you have to? If your hair does fall out, then at that point it may well be less of an ordeal to clipper it off than it would be pick it up, clump by clump - so surely doing the deed then makes far more sense? Big hug, girl. Hang on in there.
I saw my onc. this afternoon - 3FEC/3TAX starting in a couple of weeks time… so the first one will be out of the way before Christmas. I have my pre-chemo appt. next Monday - amazing how fast these appointments keep coming now I’m in the system!!
Only poo is that I may not have avoided rads… my onc. is double checking as during meeting it was stated that the op had achieved clear margins, but the path. report contradicted this - so she’s looking into it and will let me know. Still, at least she noticed the discrepancy! If I need them, I’ll have them. I just didn’t want to have to travel to Southampton daily for weeks…but it’s no biggie really.
I’ll be signed off work for the duration, we discussed me working in a school, and she didn’t think it was the greatest environment to stay healthy in during chemo, but I know she’d have been ok with me going into work if I’d wanted to. I just don’t want to delay the treatment by ending up with a cold… so prob. best to stay away. Will chat to my boss tomorrow…lol… wish me luck!!!
Polly - well done you, hope you avoid all SEs and give us hope! Good luck with the cold cap
Nymeria (beautiful name by the way), I agree with Sophie triphazard - keep your long hair for now. The chemo nurse told me the cold cap works 50% of the time - so it works for one in two people.
Emma, I’ll join you and Nymeria in writing off 2011 as a treatment year and then get reconstructed (in my case a diep flap) and back to whatever it was we used to do before our brains became full of medical terminology
PollyPocket thanks for letting us know that if we can put up with the cold cap for 15 minutes it might start to feel better. My husband said it was one more thing to be uncomfortable and I shouldn’t bother. My hair is far from beautiful - but it’s mine and I reckon it’s worth at least trying to keep. Also wishing you keep feeling good and avoid SEs.
Sophie, whereabouts in the Tropical South are you? You mentioned trekking to Southampton for RADS. I lived just outside Poole in my teenage years. By Wednesday, I’ll have been off work for 6 weeks (starting the day of my mx). I’m not even sure I want to try to go back between chemo appointments - I think they have forgotten about me. The only communication I have had for a few weeks is a form from HR asking if their medical officer can approach my doctor for details and an e-mail asking for my lottery money.
I wouldn’t wish this BC treatment on anyone but since we are all having it at roughly the same time, it will be good to keep in contact.
Pam x
sorry i havnt been online for a few weeks been doin rads at clatterbridge so sorry about your news there is a light at the end of this horrible ordeal im sure you hear all the time chemo is doable trust us we no its almost a year since i was told unlike yourself i did 6 months of chemo first to shrink my tumor and it worked was 9cm shrunk to 2cm had mx in sept 16 nodes removed few issues with my arm and cords they call them last day at rads 2moz you will get there b4 you no it stay strong and take care
Thanks elaine! It’s always good to hear from someone who’s coming out the other end
Nottsgal - I’m just outside of Salisbury, so more inland than you were! Most of my treatment can be done at Salisbury hospital, but rads means going to Southampton/Bath or Poole (funnily enough). We’re about halfway between So’ton and Bath, but So’ton hospital is easier to get to - and I know where it is better, as my eldest daughter spent some fun times there as a toddler…
Dear All,
I just wanted to say good luck and to all of you starting chemo this week. I’ve my second cycle of FEC this Friday and I can honestly say that it is do-able.
Nymeria and Pam: I can endorse what Polly said re the cold cap: It is itchy for a bit but after 20 minutes you forget about it. Not washing hair very often takes a bit of getting used to too. It is too early to tell if it has worked for me but the nurses said it works in about half of patients: It is worth a go. You might have to ask for it though.
Also I saw the gals at Headstrong last week. Just in case and they were really helpful re hats/ scarves/ fringes etc. They will give good advice. You could go for a Look Good Feel Better course: they show you how to draw eyebrows and cope with lash loss. These get booked up quite quickly but I’ve been told they are very good and you get lots of freebies.
You are right about schools Sophie- too risky. Usually I am in schools too ( I work for a local authority as a subject consultant). I was back in work 8 days post FEC#1 but I haven’t had mx and clearance yet ( March I think). I’m sure your boss will be really supportive Sophie. You can’t risk infection delaying things.
Good luck for Friday. Can I ask how soon you were feeling normalish after the first treatment? and were you tired and achey or sick as well?
I went to a Headstrong course as well as I hadn’t decided about the cold cap at that stage. The ladies were very helpful and it reassured me that I would not look like an old fortune teller in a scarf. Surprisingly, berets suit me. I’ll see whether there is a Look Good Feel Better near me.
I’m going to wait to see how the first treatment goes before deciding about work. Normally I have to drive a lot and meet people in different companies but I might see whether I can do anything in the office instead. I don’t especially want to be going to meetings with people I don’t know with no hair and also as the meetings have to be arranged in advance, I don’t want o be letting people down if I don’t feel up to a 2 hour drive.
I have an appointment for Look Good Feel Better for …
…22nd March 2011. I will have had my last chemo by then! Never mind, my eyebrows will probably not have grown back.
I’ve had two FEC, next one due on Thursday. I was sick once the first evening but after that just had no appetite for a week. Just wanted to lie with my eyes shut the first evening and day after. For another week (ie until the second weekend) I felt woozy headed and couldn’t concentrate so wouldn’t have wanted to drive or work.
Having said that, everyone is different, you may not feel woozy headed and you may have problems with sickness.
Hopefully you will get off lightly, but best wait and see and be kind to yourself.
