that is such such great news, well done, you must feel very relieved. That chemo seems to have done a fantastic job for you.
I got my results yesterday. Lymph node clear, which is good news. The grade was actually found to be a 3 rather than the 2 they had thought post biopsy, but they don't seem overly concerned about that. I am now waiting for the mdt meeting to be held so i find out what the plan is, but think it will be chemo and rads.
I too feel much more positive today and as if this is beatable, which to be honest I havent really felt up til now.
Keep up with your exercises, and well done again
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Thats even worse than my hospital stay, you must be feeling really traumatised from your treatment by the hospital. At least i got to see my husband for a while afterwards, that calmed me a bit. How dare they be so poor when you are going through such a horrific ordeal? I totally understand why you are feeling so demoralised and down now. Thats definitely what was mostly wrong with me and my very very low mood this week. Also think I underestimated the effects of a general anaesthetic and getting that out of your system, so maybe thats still going through you?
I have started to rationalise and move past how rubbish they were in hospital now, so now am just getting back to the normal low mood and terror instead of the supercharged version of the low mood. Have just had a chat with my mum ( well a sob with my mum) and told her everything on my mind, as have been trying to protect her. I feel better for it, though am starting to feel guilty for offloading already. I am going to ask if i can have access to a counsellor to speak to who is not connected to my treatment as i think that may help.
I have also found it very hard seeing people other than my immediate family, and have felt worse after seeing or speaking to them so have avoided it too. Then thats made me feel guilty. You can't win! I phoned the breast cancer care line and they said that people who love you have so much invested in you that its hard for them to see anything else.Is a horrible feeling isn't it? But at least you are out of rubbish hospital now and sleep will come. Then again, i was in the spare bed at 3 am as couldn't sleep and was just overthinking so had to read a magazine to divert the thoughts.
Its hard to see any joy in anything isn't it? My mum says i will feel like me again and wont always be like this, so fingers crossed.
I think you should go easier on yourself and get the district nurse phoned, vent some emotion chasing them!
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It was a lumpectomy and sentinel node biopsy. Thanks for your compliments about my writing, cheers me up to know I can still do something. The ward staff were awful. I couldn't wee after i came round for nearly 24 hours. The same happened after childbirth when anaesthetic knocked my bowel and bladder off line for a while.
I couldn't go home til I had a wee and they threatened me with a catheter and made me have a bath. The bath was assisted by a student nurse who didn't know why I was there, commented when I left my bra on, and gave me helpful comments about 1 in 5 women get breast cancer. i had to strip naked ( except for my bra), sit on a plastic chair hoist, be hoisted into a raised bath, then she opened sachets of shower gel to wash me and i told her not to. She watched while i splashed water to try and get myself to wee, then got me out when i asked her to ( by the white plastic chair hoist) and stayed in while i tried to wee, and i failed miserably again! So not my finest hour, totally felt degraded, like a lump of meat, piece of rubbish and unimportant. I finally had a bluey/green coloured wee which was off the scale on the wee measuring chart, and they let me go home. Was very upset by it all but think am working my way through it now and starting to see the funny side of it, though am still of course plotting my revenge.
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How rubbish is it that everyone else seems to be going away for easter and enjoying time off when all I can think about is this ball of the proverbial. Has anyone done anything at all that has made them even slightly smile, and has anyone got any tips on how to do this? The best I did was put make up on to change my mood.
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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.
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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)
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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
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I have looked at the linked thread, thanks for pointing me in that direction. Scary stuff. I think I should just be grateful for my two lovely boys and concentrate on fighting to be here for them.I have my op tomorrow. Thanks to everyone for spending the time reading and replying to my post. x.
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I wondered if anyone has gone down the IVF/embryo freezing route? My husband and I had been trying for baby number three when this BC diagnosis happened earlier this month. Thankfully it hadn't worked out yet so I do not have the extra burden of a growing baby to consider.
I feel like i should just be very grateful for the two lovely boys I have, but always expected to have a large family so feel a bit cheated. When my nurse told me i could have ivf to make embryos to freeze, my initial reaction was that i couldn't bear delaying treatment, or going through that physical and emotional hurdle as well as the cancer treatment. Plus if my little actually formed embryos were out there frozen, thay would seem like my children and i couldnt bear not giving them a chance later, it would be like giving up on them so I would feel obliged to try for them even if I didnt want to at that stage.
Now though I am reflecting that i may live to regret that decision. I can see an ivf consultant quite quickly apparently so i may do that. I have my lumpectomy and SNB tomorrow.
Anyone got any views/experiences? I am just turned 36 .
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i know exactly what you mean about wanting it to all go away. I am so glad that I acted as soon as I found my lump and I told people as it would have been so easy to pretend none of this was happening, lock it in a box in my head and deal later, and if nobody knew I would have been tempted to do so. You should give yoorself credit for being brave enough to go and be checked, and getting this far down the line.
Its a scary ride we have suddenly been put on and i want to get off too. But now am just looking forward to having this stuff taken out of me tomorrow, and am sure you will have moments of feeling like that soon.If the doctor would let me see what she removed, i would jump all over it and kick it to kingdom come for what it has done to my life.
Don't apologise for being negative, what kind of superhuman freak would you be to get news like this and be upbeat positive, "this will make me such a better person" attitude immediately!Or at all! Its totally totally totally awful, unfair, terrifying, unfair ( i said that before but I think unfair is the main thing!) and where the hell did it come from suddenly? Tell everyone to shove it if they tell you to be positive cos if you can't be down now, when can you be, and your mindset will change in glimpses, it must do.
When i had my meeting with the breast nurse last week, she showed me lots of post op photos and different types of reconstruction and i must say they were much much better than i had thought they would be in my head. They can also rebuild a nipple apparently so it looks alright. The prosthesis felt wierd but again definitely not as horrific as i thought they would.More like those chicken fillets some women wear to boost their cleavage. My mind certainly played tricks on me beforehand. That said, its still rubbish and is a god awful situation to find yourself in. There are not enough swear words to throw at this situation, although believe me I have already used up many of them!
Take care of yourself
Ps. waiting for my results, and then the night i got my results was truly horrific and hard ( again,afterwards it was more my wrongly remembering and dwelling on things rather than because of the facts i was told), but after that i seemed to turn a corner a bit as at least things were getting sorted, hope this helps xxx
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Thanks everyone, am learning all kinds of new stuff! On a positive note, we have more offers of babysitters than ever before so we are taking advantage and are off out to the pictures tonight. Hopefully that will be 2 hours without crying ( we are seeing kick ass so surely is funny not sad!?!) and i am so gonna get the biggest bag of pick and mix that anyone has ever seen. Might even get hagen daaz too, and buy their huge drink rather than sneak in a can of diet coke! Thanks again
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Thankyou so much for your reply. The approach you have taken with your children sounds really good and feels right for our situation too. You come across as really together and brave on your messages, and its good to be in touch with you. In my head, I was basically resigned to 9 months at home, in bed, becoming the poorly relative upstairs, with my boys realising anyone could do what I did and so easily replaceable! The advice about my holiday is great, I have just been worrying about it intermittently but avoiding dealing with it. I haven't opened the email from the cottage owners as I dont want to read it! I haven't met my oncologist yet but will ask my breast care nurse about it.
Quick question, does FEC just mean chemotherapy?
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its lovely to hear from you at the same time as being totally horrid to hear from you as it means we are both in this same horrible position.
life is a total fog at the moment and I keep crying too. I also think I am totally self obsessed and will be embarrased when I look back and see these posts, but hey they help me now so thats got to be a positive! But I do feel better than I did the first week and can hold myself together a bit better in front of my boys.
It is wierd as I feel guilty for bringing this into their life, and into my family's lives.My husband is also helping out a lot more, as is my mum who luckily only lives a few minutes drive away. Its hard to keep on top of anything, and I couldn't even tell you if we need more milk, bread, loo roll etc. Sounds odd worrying about that but it just highlights how out of control I feel.
I am getting nervous about my operation on Monday now, having managed to block that bit out of my mind until today. I bought new soft bras and pjs from m and s on friday, but the bras feel really wierd on as they are soft and non wired.I also had to sign a form at the till for VAT relief on the post surgery bra I bought. It was only 9 quid but I would have preferred to pay the VAT than have to sign that thing with a queue behind me and my 2 year old screaming in his buggy. I bought the post surgery one as it was softest and didn't look too bad.
Apparently I should only be in hospital overnight and should have no drains in as i am having the sentinel node biopsy. I am not sure if you have been offered that as many surgeons are still training on it, including my own surgeon. I have insisted that a different surgeon already trained comes into my op to do the sentinel node part, hence having to go to a different hospital first for the radioactive stuff to be injected, but from reading up on it it seems that the SNB is the way to go for less side effects and quicker recovery.
I have just freaked my husband out by putting a headscarf on to cover my hair to see what I will look like bald. I think it looks alright if i manage to keep my eyebrows and eyelashes and put full make up on everyday, otherwise its not my best look....
I am finding it really hard to hold on to any trace of my normal self. I feel I was travelling along one track and then got bunny hopped a few tracks across to this new track, and I am watching everyone else I know happily carrying along on my old track. I just want to know that people have been in my situation and have gone through treatment and come out the other side with no recurrence and a normal ish life again, but I am scared to ask.
The nature of this site, and other support groups, must surely be that people suffering ongoing problems or current treatment are likely to be over represented compared to people who have dealt and moved on, but the threads I glimpse have half scared me to death already! This isn't a criticism of the site or the people on it, I think I would be lost without this already. I think the advice of dealing with one thing at a time and not looking forward too far is pretty sound, but it feels bloody impossible to follow!
I don't know where you are up to in your diagnosis, but if you want to message me privately rather on the board then thats fine by me. It is really hard writing on this, though I am glad I did. I suspect I may have to get a blog or a diary going as I seem able to type and talk on here much more easily than in real life, as real life doesn't seem very real at the moment.
Love to you and your family
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Thankyou Kiti, yes I do have a fantastic support network round me that has swooped into action, but ever ungrateful as I am that has justleft me thinkingthey can all circumvent me and life just gets on without me, how paranoid is that! The school playground is the total toal killer, and I haven't even shown my face at play school for my youngest yet. My litytle one is struggling settling in ( not because of this lot, just because its how he was made!) and I have given my poor mum the job of taking him and dealing with the upset of him crying as I know it is totally beyond what I can deal with at the moment.
Thanks for the good wishes for monday too,
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Thankyou everybody for your replies to my post, it helps to have people understand. I felt nervous about telling my eldest boy, and having read "mummys lump" myself and being reduced to tears, I couldn't imagine reading it to him. I did drop copies off at school for the class teacher and headmistress to read, and they cried too! But the book has good ideas for explaining things so I think I will just use it as a resource for now. Thanks for the advice about telling the boys as and when it happens.The literature I have read seems to suggest a front loaded approach but my gut feeling is that that would overwhelm and worry them. Am not looking forward to telling them this weekend but just another of those jobs I have to do.
Some things that are worrying me and I would really appreciate advice on:-
1. Will I feel well enough to cook tea, do the school run, go the pictures or out for a meal, go for a walk, play with my boys?
2. I have a weeks family holiday booked to Cornwall in May half term and need to pay the balance or lose the deposit. What do I do? Silly and trivial given whats happened, but the boys have been looking forward to it since we went last year. I am apparently very likely to have chemo, so would guess this would coincide with the start of it. Should I just cancel it or risk it? Do i want to be away when my hair starts falling out?
3. So the cold cap does really work for some people?
4. Do you ever feel on an even keel again? I am so irritable and snappy and then half an hour later just keep apologising for my behaviour, just because this is happening to me doesn't mean I can turn into a total cow.
5. Do people tend to go public and tell people or keep it to themselves?
6. How can this have been around the corner for me and I didn't know, and therefore what the hell else is lurking round the corner.
7. Does everyone else know practically that their surgeon is lovely and will hopefully save their life, but in fact just hate her irrationally because of what she has told her?
8. Why am I writing life changing stuff that afects my very core whilst at the same time promising to pass my lap top in 3 minutes to my son so he can go on cbeebies. Yes surreal life.
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