Hi Tors,
I have put for you below the link to BCC’s publication on FEC chemotherapy which I hope you find useful. If you would like to talk to one of the breast care nurses here about any concerns you have then please feel free to contact the helpline staff who will be only too happy to talk to you. Calls to the helpline are free, 0808 800 6000, open Mon-Fri 9-5 and Sat 9-2.
Take care,
Jo, Facilitator
Hi Tors and all other ‘newbies’
I am so sorry that you have had to join the club that no-one wants to be a member of. You have a wonderful way with words, and obviously a great sense of humour although you may not feel that at the moment.
You are still very much in shock, and those scared feelings will last for a long time - I don’t think any of us will ever be the same person again, but that’s not necessarily a bad thing.
I was diagnosed nine months ago, when my gorgeous baby boy was just nine months old, and I can still remember the sense of utter and complete despair. But … you can and will get through this. Use your family and friends - let them help you, and use all the new friends that you will meet on these forums. I have said on numerous occasions that I truly don’t think I would have got through the past nine months without some of the girls on here.
I had a lumpectomy and radiotherapy (no chemo) and am now on Tamoxifen - I was 3/8 positive for oestrogen.
I hope you have a great night at the pictures, and don’t eat too much pick and mix!
Please message me anytime if I can help if any way.
Thinking of you
Shenagh xx
Hi Tors, The first thing I noticed is how well you can get over just how you are feeling. I think it is great that you have come on here and I hope you get lots of support. And by posting on here I am sure you will be helping other women too who perhaps cannot put down in words how they feel…as you can.
I was 39 when I was diagnosed and my daughters were 7 and 14. I had a large tumour which had to be treated with chemo before they could carry out a mastectomy with reconstruction. I was a scared as you are but now 21 years on and I am enjoying life again. It has been difficult at times. My girls are 27 and 34 now and I feel so lucky to have been around to see them grow up. BC seems to be affecting more and more young women these days. In 1989 there were fewer young women in hospital having treatment. I too was in shock when I was diagnosed and remember crying for hours when the girls were asleep in bed. But 21 years on and life is good again and I feel an inner peace that I didn’t know I could ever have again. Please continue to let us know how you are doing. Hugs coming your way. Love Val
Val
You are always such an inspiration and give people hope at a time when they may need it
Julia xx
I just have to join this thread to wish you all the very best for your ops and further treatment.You will find,as most of us do,that once the tratment actually starts you will feel better,more able to cope because something is being done to remove the cancer and you can begin to focus again.I am much older than you[my daughter is nearly 36 and has babies aged 1 and 3]but like all of us I had that cold sinking terror at dx and to a lesser extent when I remember it.I was dx in 2006 with a 2cm grade 2 triple neg bc.I had WLE,chemo[4 FEC and 4 taxotere]and 15 rads.Here I am,I go to the gym most weeks,I swim,I have hair[no eyebrows though!]and I will never again take my ordinary little life for granted.I wish you love and joy,you will find the courage to cope with what you must.Enjoy your children and look forward.
Love Valxx
Hello all,
I have finally summoned up the courage to join this thread after weeks of reading so many people’s stories that stir up so much mixed emotion that I am almost lost for words - a rare thing for an English teacher! Since my diagnosis on March 2nd life has changed forever. Emotionally it’s like going on every ride on the theme park over and over again. And I totally identify with the sense of suddenly feeling like a different person.
Your words inspire and give me hope and have helped me struggle through the past few weeks of hospitals and tests and results and choices and learning all about things you never knew existed, along with the tears and fears and sleepless nights. As my op day gets nearer, however, I feel less able to laugh and act strong for my friends and family who all just keep telling me to ‘be positive’ because they hope that will help me (and them) through it all.
I am having the sentinel node injection on Wednesday followed by a mastectomy on April Fools Day! And, much as I try to be brave and all that, it terrifies me. I think the main fear is what happens after that - the awfully long wait until April 16th for the results and then what will happen next - the not knowing is so bizarre and scary, although reading various threads has prepared me for the possibilities and realities of having chemotherapy and hormone treatment which is probably likely.
I am 54 on April 10th and have a son who just turned 23 who I live with in London. I am under Homerton Hospital in Hackney and teach in a local secondary school. My tumour is thought to be 2.5cms - invasive DCIS and oestrogen-receptive. I am five years post-menopause.
I am just about getting used to having become a person with breast cancer though some days it still feels very unreal.
Best wishes and love to everyone out there,
Annette X
Hi Annette, I am sorry that you have had to join this forum…the one none of us wanted to join.
But it is great that you have come on here and told us your story. We are here to support you too. I remember the scary learning curve of trying to get into my head all the new words, treatments, whilst trying to come to terms of the horrible diagnosis. My husband was wonderful while all this was going on and being a nurse himself helped enormously. He is still a great support.
There were no forums like this when I was diagnosed way back 21 years ago and it was only recently that I cam across the site when looking for some information…now I am hooked…but in a good way!! I too have needed support on many occassions so it is good to be able to offer a helping hand when other people are going through similar things. Some of us are even up in the middle of the night if we cannot sleep!
My tumour was large 5cm and I had to have chemo before they could carry out a mastectomy with reconstruction yet my new boob still looks fantastic…unfortunately my other boob has grown a bit so I have what I call “my pert 39 year old one and my 60year old gravity ridden other one”. But you know what?.. in a bra with my clothes on no-one could guess and I feel very happy with the outcome. In fact I found losing my hair more upsetting than losing my breast. It hasn’t been easy, I will admit, but by taking just one day at a time, I realised I could cope with all this. Hve you a Maggie Centre near you at all? They can be most helpful and your Breast Care Nurse, if you have one, is useful if you forget to ask something along the way, or do not understand something.
It certainly makes you realise who and what are important to you. Life is different now…but life is good again…something I never thought would happen ever again.
ladies,
Just wanted to say that all my best wishes go out to you for this week with the ops and next treatments.
I was living in Ireland when diagnosed and living alone but during chemo I was able to cook, clean, go out on days when I felt OK normally on chemo day but by Friday I was tired so I’d normally be stocked up on food for the weekend of being tired.
I had 3 friends without me knowing at the start that organised amongst themselves to check in with me, bring food, clean up, change bedlinen once a week, they were a lifeline but after the first month when I felt more confident to deal with it myself and off course they had lives too, I fgot a ‘stranger’ in and paid for a cleaner to clean, change bedlinen and collect groceries once a week. My friends still came but more to spend time with me chatting and watching movies.
I also went public with my family and close friends and then told them to tell others. By word of mouth it got around and I was able to deal with the phone calls without having to repeat the usual ‘I have breast cancer…pause etc’.
I went in stages of going public by people knowing just by looking at me, especially with the hair. I invited my friends around with a bottle of wine and one of them shaved my hair off (never had the option of cold cap 10 years ago) which was a hard decision but personally I felt better in control than finding hairs coming out in the shower, then wearing my wig in public was not as bad as I thought it would be even lost one wig when I washed it, left it on the radiator to dry and I burnt it! When the eyebrows and eyelashes went, by then people that mattered to me knew everything I felt strong enough to ditch it completely for some reason. Obviously you get the ‘looks’ by people but I have to say I felt better, was quite therapeutic for me to massage my head most evenings. When it started to grow back I was delighted and it couldn’t happen quickly enough.
It was hard to watch and listen to my friends have ‘lives’ but we did have some laughs too and really appreciated them. I would then say well I’m going to get back to that after this and 10 years on I do do the same things like going out but now am alot more choosy how I spend my time and who with.
thinking of you all and great to hear Val that you are at 21 years now!
Jan x
Hey Annette I was an English teacher too!
Hi,
Have been strong all day, having a nice normal time with my family. Its my operation tomorrow, am nervous but really want to get stuck in and start kicking this thing into touch.
I have broken down what tomorrow holds. Eat light breakfast by 7am. Get boys ready and then say goodbye ( thats gonna be a choker isn’t it). Drive with husband to different hospital to have radioactive stuff injected in my breast and then a wire guided in by ultrasound. A month ago that on its own would have been giving me a panic attack now, but instead I am strangely calm, though can’t promise I will be at bedtime or tomorrow. I have the sleepy tea, lavendar drops and piles of magazines next to my bed in case of a bad night tonight.
Then its back to my own hospital for settling in to the ward and the op. Will be demanding a pre op sleepy drink medicine thing, or will be frantic going down for anaesthetic. Then will have needle in hand, sleepy stuff injected and my surgeon injecting me with blue dye and then cutting round my nipple and cutting out the horrid stuff and hopefully a nice clear area of good cells around it.A bit of work on my SLN and then that should be it. Oh, stitch me up too please, i forgot that bit. Should be home Tuesday apparently with no drains. I pray to God it all goes according to that plan and there are no nasty lurking surprises.
I finally told the boys this morning. Another horrible step. I just said mummy has a porly breast and I need an operation at hospital for the doctor to mend it. My 2 year old put on his “poorly” face and stroked my breast where it is still bruised from the biopsy. My 4 year old was fine and just said he would jump on daddy instead for a bit to give me a break.
So I am hoping very very very hard that all will be well. And to anybody else out there who is having an operation this week or waiting for results, good luck
thanks again everyone
xxx
Hi, I am just posting a quicky Tors, to wish you well for tomorrow. I will be thinking about you and sending vibes through the ether to give you a cyber hug. Take care and know we are all rooting for you so you are not going through this alone. Love Val
Hi Tors.
Good luck today. Will be thinking about you. Deb
Hi Tors,
Thinking of you and wishing you well today.
Annette X
Hope it went well Tors, I was 36 at dx in June 2008, had a wire guided WLE, re-excision 3 weeks later, 6 FEC, 19 rads and now 5 years Tamoxifen. At the time it seemed impossible to get through but I feel so different now, I wish you lots of love and hope you have people around to help with practical things in the recovery time, Starflower xx
Hi, Just read your thread and had to say, i really hope all went well with the opp, thinking of you and sending cyber hugs…
Love Teresa xxx
Hi everyone,
thanks for all your good wishes. I came out of hospital on Tuesday afternoon. The op went well, but the hospital stay was horrific as I ended up on the bowel ward as there were no beds on the breast ward, and the nurses were clueless both in providing physical care and emotional support, and basic nursing skills come to that ( pain med after op would have been nice, as would drink of water…). It was non existant. I won’t go into it now, tho rest assured i will tell all about it at length when i am up to it. Dont let it put anyone off tho as if i had been on the corrct ward the experience would have been much much better, and the physical bit was fine, and i am alive even though i had a genreal anaesthetic, which i must say surprises me as i was convinced i would fall on the bad end of those statistics too!
I have felt very very very low this week but am just pulling myself together yesterday and today. If anyone finds themself on a non breast ward, speak up, and make sure the link nurse system is running correctly as they are apparently supposed to have a link nurse from the breast ward for cases like these ( not that i saw one, and my nurse tried to take blood pressure from affected arm just after op…v angry)
thanks again
x
Hello Tors you put into words everything I have felt since my diagnosis in December through the Sentinal Node experience, mastectomy,hospital and post op recovery. I’ve had 2 chemos, still break down and cry especially at night, have good days but it is always in the back of my mind. I feel indulgent when I think and post about my fears of dying and yet that is what I fear most as we all do. Keep up the blog you do it so well and are helping so many people.
Thanks Scottishlass for taking time to post. Your story is exactl;y what we all need.
Hi tors,
Have recently been diagnosed myself,know exactly how you feel. Kept having weird out of body experiences at first, thinking there is this conversation going on about cancer, surgery, radio, chemo,its really serious stuff…and its about me!!! Fortunately things happened really quickly and was diagnosed same day as my mammogram call-back with ultrasound and needle biopsy. Saw surgeon few days later, had SNB and lumpectomy a week later. Whilst in recovery they told me the lymph node was clear, hooray! Next week at check up I was told that they had to do a bit more as my margins werent clear. Had it done next day! It took about a week to recover from the anaeshetic both times- soooo tired- but the surgery wasnt too bad, nor the blue nipple etc.
Saw genetics consultant 3 wks ago who has told me that I should have a double mastectomy as I am extremely high risk of another lump in the future. Seeing surgeon next week.
It is very tough at first although I wasnt very surprised as so many people in my family have had it, thats why I was having regular mammograms. But still a big shock. It does get better. I think my husband was worse than me initially. The conversations weve had are something I never thought Id be having. Sense of humour wins through and there are some really funny moments, surreal but wierdly funny! Ive been choosing the reconstruction Id prefer and trawling through inernet photos of before and after. It doesnt get much wierder than that!
xxx
Hi everybody,
Firstly, Ado thanks for encouraging me to write more, have felt a bit odd about committing everything to the page! You are so right about feeling self indulgent talking about being scared you will die, i feel the same.
So an update on how i am feeling. Firstly, I have had an horrific week since my operation, as i found the time in hospital so traumatic, due to the rubbish care rather than any breast related stuff. Thats why I havent felt up to posting much. feeling more up again now. Just been Sainsburys with my husband and boys and although I did all the thinking about what we needed ( as cupboards were bare…), my husband had to collect the stuff, push the trolley with the boys in, put up with their usual asking for stuff and then do the whole conveyor belt unloading and packing, putting shopping and kids in the car then unpacking at this end. Was quite amusing to see him realise how hard it is and also how dear it is when you pay!And was good to get out and have some semblance of normality.
The operation was alright. In the morning I had the radioactive stuff injected in my breast. Was a bit worked up about it but in fact it took just seconds and was like a small scratch, genuinely. Ten million times easier than the core biopsy. Then I had to walk to the other side of the hospital to have the wire put in the lump ( am avoiding the “t****r” word as freaks me out). It was weird as I had a gown on and no bra, is very odd walking with no bra on!
A Nurse took us over and was lovely. Everyone was extremely kind and gentle with me. They put me in a normal ultrasound room and gave me a local anaesthetic in my breast, which did hurt a bit but not much, though i did say the f word a good few times. ( i would here too if it didn’t mean my posts wouldn’t go up, and the c word, t word, sh word and many other words).Then they put the wire in, it was quite thin and looked about ten cm long. I didn’t feel pain just slight tugging and pressure. I didn’t watch but did see it sticking out after. They put a dressing over it then so I couldnt see it. They also had to put a cross with black marker on my breast to mark the correct one. I kind of thought that if the surgeon didn’'t take the huge clue of a wire sticking 9 cm out of my breast then I didn’t really want her doing the surgery!
Back then to the nuclear medicine dept where i waited for another hour until the radioactive stuff had spread enough. I had a gamma xray then where i lay down and this machine hovered over me, and then went to each side and i had to lie still in helpful positions while they built up 3 seperate pictures which took 5 minutes each.
After that, back to the main hospital where i was told i was on a different ward. The care on that ward was rubbish. Not going into it in detail as it was specific to me and I haven’t dealt with it in my head yet. My advice though is try and get your surgeon to authorise a pre med before hospital as going down without one freaked me out. Also ask them if your pain meds have been written so they can be put in by your cannula or a jab if need be as I was really sick after the anaesthetic so threw mine back up and then they were looking for a dr to sign up the other stuff. If you are on a non breast ward ( which is very unlikely) then ask if the link nurse from the breast ward has been made aware and has explained things as you should have one ( i didn’t).
Anyway, other than total rubbish basic nursing care, a dr came to see me and drew another arrow on the relevant breast, just in case the surgeon ignored the 9 cm wire and the big black cross and decided to operate on the other breast. I was terrified going to the operating room but hey, I made it out the other side. The waiting was much much worse than the actual anaesthetic, and I don’t remember anything til waking up in recovery and starting to chuck my guts up! Apparently I had had a discussion with my surgeon when i had first been brought round but can’t remember.
I came home on Tuesday. Avoid the back route home to miss the traffic as even though it is quicker, the speed bumps are a killer… Slept straight from 7.30pm til 5.30 wednesday morning.
I have a big round plaster round my breast which looks like a big corn plaster, with my nipple sticking out. It has plastic waterproof sticky stuff over it. Then I have a smaller steri strip type dressing under my arm with the same clear sticky stuff over it. There is a lot of bruising and swelling so i don’t know what it looks like yet.
I can shower fine. The no deodrant thing is wierd and i feel smelly. I bought three bras and am glad i did as i wear one through the night. I wish i had bought a blck one as i can’t wear some of my tops now as got a stupid thick white bra strap showing. The m and s post surgery bra is the prettiest and softest and comfiest and was also cheapest.
I had really good movement early on and am just on paracetamol. Physically its not been that bad, emotionally it has taken its toll. I expected to feel a lot better to have got this out of the way, but I haven’t and have see-sawed back to near the start. I have plummeted to the depths and been convinced I am going to die, and in a very “final destination” way decided there was no point fighting this as it is going to come and get me in the end anyway so why put myself through this now?
I have lay in bed, looking out of my window, thinking i wonder if i will be lying here when i die or will I be in a hospice? I have rehearsed my last conversations with my family and children and made myself sob. I have written my gravestone inscription and newspaper death announcement. Didn’t manage to sort out the funeral hymns though, got to save something for me to do next time I plummet!
But after 3 days of this, I got up yesterday, had a shower and put proper make up on and even straightened my hair. Blusher can do wonders and seeing myself looking more normal really helped. Went out yesterday to the pictures with my boys and husband, and been sainsburys today, and getting out helps, though is exhausting.
results should be late this week and am beyond terrified. Cannot cope with one iota of worse news. I decided my son had meningitis on wednesday night and had a full blown panic attack, when in fact it was obvious to anyone that he had a slight virus.
so anyway thats what I’ve been up to, thanks for reading this far.
xxx
Hi Tors
You have a wonderful way of writing and made me laugh, in the appropriate places of course! It’s terrible that you had to experience poor nursing care - totally unacceptable, but thats me speaking as a nurse. What surgery was it? Was it sentinal node biopsy? Waiting for results is hell but it does get easier, I promise.
Take care
Julia xx