Lump is not scar tissue, it is below that - but accepting it as the inevitable. I do not yet know enough about the illness to understand how this now affects my prognosis - but it cannot be good news. Yes I would be very pleased to visit, just let me know the dates and which you would prefer. I really like Shropshire by the way - especially Shrewsbury, Ludlow and Much Wenlock. I have only visited Lincolnshire once - to see a friend in Grantham, but one day would like to see Lincoln as it looks like a fine historical city. I like history!
Sorry to hear that Shell wot a wasted boxing day. I was on tremadol after my surgery and hated them, they used to make me jump in my sleep! Which Marsden are you going to, Fulham road or Sutton? I’m under the sutton one so am there all the time and will def come and visit you if you’d like me to?
Hi
Oh Bright I’m sorry to hear that,try and keep positive though.I know its easy to say but that’s what we all have to try and do.When do you see the doctor again about your lump? Sending you a big ((((hug))))…x
I used to live in Telford,my family are still there.I like Shrewsbury too its a lovely quaint town. Good for night clubbing when i was younger to…Them were the days,if only i could turn back time…
Jo - I am under the Marsden at Fulham Road,if you feel well enough to visit it would be nice to see you.
The Tramadol keep waking me up in the night and i jump. I also feel out of it at times.
How is every body and where is Caron??? I hope your ok Caron,thinking of you.
How is Muv getting on? Hope shes ok too.
Hi everyone,
had a couple of bad days ( crying & stuff ! ),
hope you are all ok???
Shell hope you had youe chemo today ???
I want to ask how do they know if the chemo is too much for you ( ie how much you can tollerate ???) what happens how do they know?? Its just that I heard a that this woman should have had 6 chemo and she only ened up having 4.
Bright it may be a scar as you said they never went in through your armpit so maybe it is where they sucked out the lymph nodes with the pipe ??? when will you find out ???
Jo how are you now ( I am ok )getting ready for the next lot I can’t feel any shrinkage yet either in fact the small lump I have on the side of the breast has been stabbing and I havn’t noticed that one stabbing before.
Gail pleased to hear your diet is working !! ( write a book about your miracle diet you’ll make a fortune !!! LOL )
Oh yes and Jo has your hair fallen yet??? and can anyone answer me when will my hair fall ( so & so days after chemo?) or could it be anytime ???
Owen said to me " what if your hair doesn’t fall out? " I said IT BETTER BLOODY DO NOW IVE CUT IT ALL !!! LOL LOve Caronxxxxx
It seems a bit worrying if the chemo doesn’t perceptibly shrink tumours: does that mean it isn’t working? What does your consultant say… I am having my revision surgery on Friday, though do not know yet whether it is as a day or overnight patient. I was at the hospital today getting my dressings changed - the areas of dead skin, make me feel quite ill, though I’m not really in any pain. The new lump is not anywhere near the scar - it seems to be in the skin (rather than on the bone) a couple of ribs below the mx breast. I have an appointment on Wednesday so may mention it then.
I went to the Monsoon sale today and bought a couple of new skirts - a black one with white ribbon bands and pin tucks, and a dark pink one with gold threads. I have a real passion for skirts and have about 60 at the moment - though collected over quite a long period of time. I also visited a lady in the hospital I have befriended - she is in with a bad leg, and because she is Canadian there is hardly anyone nearby to visit her.
Caron as you know I’ve not started chemo yet, but what I gather from reading the other threads is that without the cold cap, hair loss seems to begin from around day 17 to just before or after second round of chemo. What do you mean when you say about how many rounds you can tolerate… just wondering what I need to prepare myself for… and whether the treatment will actually work… I was thinking we know the disease is unpredictable i.e. where it will spread to exactly - if that is the case, then by the same token does the illness respond differently to the chemo? i.e. it works for some and not others… scary thoughts really.
I didn’t get my chemo, my bloods count was too low again. I asked to have the injection to boost my white blood count and was told no because it wold knock my immune system lower than what it is now for the next chemo, as this chemo doesn’t seem to be working i wont be having another chemo i will be having surgery.
Iv told the oncologist that if i dont get chemo on Friday im stopping my chemo treatment and am going to see the plastic surgeon at The Marsden. As my tumor looks like its getting bigger and i have IBC and i am triple negative i thought the Oncologist would be happy to give me the injection to boost my cells knowing this is probably my last chemo…
I am so pissed off, i feel iv hit a brick wall. While there’s no chemo in my system i feel there not helping me and the cancer is eating me away.My nipple is so inverted now there’s blood around it when i clean it with a cotton bud. The breast nurse and the oncologist didn’t pass comment on it, is this supposed to be happening then??? Is it normal???
Caron - glad your feeling a little better, i have cried all afternoom because i didnt get my chemo…
My boob gets shooting pains in it all the time its annoying.
My hair started to fall out in the 3rd week, days before my next chemo. Your scalp goes sore like prickles, it gets annoying so you cant wait for it to fall out…
HI all,
Shell what do you mean this is your last chemo? ( I know it’s your last chemo ( traetment wise ) that you can have but they are giving you more? ? ?
I hope they get yours under control Shell ! ( I really do , I worry about US all ).
So do you know when they will be doing surgery ? and will they give you chemo afterwards ?? Dont know why I ambombarding you with questiond you probably have a million & 1.s yourself !!
Also I think it is normal ( as far as the cancer is ) for your nipple to discharge blood ( blood or puss or both ).
Bright what I meant was that there are people who should have more chemo but they have so much and the Doctors decide that that patient cannot tollerate any more.
I just wondered how they know who is tollerating it and who isnt.
And I wouldn’t worry too much about the chemo as it’s the unknowing that is the worse ( as we all know) you might be like me and have not many side effects and even if you do it’s good medicine thnink of it like that ( thatswhat i do).
S o it should be Saturday then when my hair should fall ???
Caron - If this next chemo doesn’t work then it stops at 2 goes. Then i must have surgery.I have spoken to the doc and i should be getting referred to the Marsden sometime this week,once the surgeon has looked at me he will then decide when i can have my op…
I wont be offered any chemo after the op,if the chemo doesn’t get the cancer under control now it wont work after the op. My body just isn’t responding to it.
Oh Shell,
I feel really bad for you . you have a bad form of it ( if there is a good form??? ) ???
I hope they get get yours sorted out , once and for all !!
I don.t know much about radio but I know that alone has worked on lots of people ! so don’t throw in the towel just yet !
, and even with just the surgey they will go as faras they need to with surgery !, Shell can come see you tomoz I have text you find out if I can xxx love Caronx
Not been on much over the last few days - on top of everything else I developed a rotten cold. Then on Boxing Day my temperature hit the 37.5 that they say must be referred to the hospital. Well I phoned to be told by a nurse, who really did not seem to understand what I was talking about, that I should take paracetemol and monitor my temperature and only phone back if it got to 38. At that point I found the coldest point in the house that I could - took the parecetemol and kept my fingers crossed. After about 2 hours the temperature had come down a fraction so I went to bed and hoped for the best. It was OK the next morning so I avoided a trip to the hospital. I’m not sure that the nurse gave me the correct info. because back at the beginning I was told to be very careful taking anything which would deal with a fever because it could mask a serious infection. I will check with the treatment suite on Wednesday when I have my next lot of bloods done.
Caron I lost my hair to the point I shaved it off 3 days before my 2nd chemo was due. Also after my 1st chemo the shrinkage of my lump was minimal. It became more pronounced the more chemo I had- they told me it does have a cumulative effect. Now with 6 down and 2 to go there is no heat or hardness in surface of my breast at all. Just the lump much reduced within. I was told that stabbing pains I felt could be the chemo working.Who knows?
When I started on the Taxotere I was very worried about how I would tolerate it and my lovely Oncologist said that if it was just too difficult they would adjust the dose for other sessions. They work out how much to give you on your size. Height and weight. That is why we get weighed everytime we have our blood done.
I did meet a lady at the hospital who had had to have her chemo stopped early because all the skin on her hands and feet had peeled of very very badly.
Shell my heart goes out to you. You must be beside yourself with wondering what will happen. I remember asking my oncologist what would happen if chemo didn’t work and she said they would start radiotherapy early. Maybe that is what will happen after your surgery.
Shell, You really are going thru it, i’m so sorry. I think you’ll feel much better once surgery is done, right now you feel as if nothing positive is happening and it’s taking over. the sooner you get to the Marsden the better, even though it’s a long way from home, it’s the best place to be.
Caron, yes posh crop is hanging on for dear life. I had the exact same conversation that i’d almost be annoyed if it didn’t fall out now i’ve got this ridiculous short haircut. Having said that I have cancelled tomorrows appointment for a crew cut, coz I’m absolutely dreading that next step. I have to say though, my head is very sore and sometimes itchy so it’s only a matter of time!!
Bright, it is possible to have lumps that are innocent cysts and nothing to do with the BC, we always think the worst don’t we? try not to worry, easier said i know. wait until you see someone and try and be positive if you can.
Andie you’re right about the temp thing. i’m so paranoid about infections i’ve got thermometer next to me at all times. I can’t believe your nurse told you to take paracetamol, think i would have ignored that and turned up at hospital anyway, but then I am a bit of a panicky pants!
I have just had a call from my doctors secretary and she has faxed my referral to the Marsden this morning. I will ring the Marsden about 1.30 ish to try and get an appointment date over the phone.
The chemo nurse has telephoned me too, says “i looked very upset yesterday when i couldn’t have chemo”!!! Am i ok???
No i am not ok!!! I have told her that if they don’t give me my chemo on Friday then i will not be coming back for any more,they could easily give me the WBC injection to boost my cells. I have just had enough of running about after every one.
Its me who had to contact the Marsden,its me who pushed for one more chemo to try, its me who has to get an appointment with the surgeon, its me who has had to communicate between my doctors secretary and the Marden’s secretary and its up to me to cancel my next scan and chemo if i feel its not working…My Oncologist has done nothing to help me iv had to do it all my self,has any one else had to do this? I thought the medical profession were supposed to do all the running about?
And to top it all my company is closing down in March so i no longer have a job, where do i get my sick pay from now???
No wonder my bloods are low with all this extra stress.
I have got flu symptoms this morning as well…why do i even bother???
Sorry to moan but i just had to get it off my chest…
Andie - the chemo nurse told me to ring them if my temp was 38 and above before taking paracetamol… Hope your feeling a bit better today…
Bright - fingers crossed for you for Friday, hope it all goes well, let us know how your getting on.
Jo - yes i think i might feel a lot better once surgery is done as at the moment i feel like iv hit a dead end in my treatment.
I just want this C out of me i hate having to carry it around with its jabbing pains and burningness.
Caron- How are you feeling today and hows your hair,falling out yet?I hope your well.
Muv hasn’t been on here for a while, hope shes ok…
Shell - I was thinking just the same as you. I was discharged from hospital: no-one had looked at my scar/incision line; with just a follow-up appointment at the dressings clinic; and no details or advice on who to contact if something went wrong - partly compounded by the fact that I am being treated at two different hospitals, one for cancer and one for reconstruction. Just like you - it was me who had to keep going back to the hospital or GP to get them to look at my operation site, assess healing, change dressings, and to find out what drugs I should be taking to aid the healing. And most recently to sort out date for the revision surgery.
Thanks Andie for comforting words about other lump I’ve found, but it does feel like the enlarged lymph gland that turned out to be malignant. I will mention it tomorrow as have appointment with consultant who may have results from histology. Also today I have a really strange throat - feels partly sore, partly difficult to swallow - so not not the best of days today.
We were going to go to Hampton Court to visit the Tudor kitchens - where they put on displays of cookery and things like spit roasts, but it was so cold that we just went shopping in Surbiton instead. (The railway station is a really good example of Art Deco building - if anyone happens to be in the area - quite a site to see). Jason was in his element as he likes shopping for stocks and bought 60 rolls of Christmas kitchen paper as it was down to 90 pence for two. It also comes with little packets of sparkly stars - good for putting into parcels and cards.
Shell - sorry about your job. Best place to find out about benefits would through Dept for Work and Pensions. Here’s the relevant part of the website: dwp.gov.uk/lifeevent/discare/sick_and_unable.asp (I know we are not supposed to post websites - but this is government dept - so no kind of commercial benefit). Do let me know your dates for the Marsden and I will definitely visit - and bring you in anything you might be missing like fruit etc…
Having a rest now - before embarking on dinner. On the way home it really struck me - that this could be my last Christmas. It may not be, and life can take many twists and turns - but the diagnosis of C really does change one’s outlook on life…
OOOH Bright, don,t say that, don’t even think it, none of us must think like that!!! Everyone keeps telling me positive thinking is the only way forward.
Shell, I honestly have to say that in my experience with the Marsden, I haven’t had do any chasing, they’ve completely taken care of evrything which obviously really helps in this situation and during such worrying times to. I’m really hopeful for you that everything will improve for you once you get under the Marsden, I really can’t speak highly enough of the place, albeit I’m under the other one but still it’s the Marsden, just on a different site. Don’t loose hope, they’ll really look after you.
I go to the Marsden to see a plastics/onc on Monday at 12.00…YIPPEEE
Thanks Jo, i cant wait to get my surgery over and done with at least the cancer will be out of me(unless its spread)…
I see professor Smith at the Marsden and hes lovely,when i go on Monday i will be seeing a Miss Fiona Mcneill. I cant wait to get it over and done with.
Bright - Thanks for the web info i will take a look today. Its not just me then who has had to run about after the doctors and surgeons.If it was down to my onc i would still be on my 1st lot of chemo because after 2 cycles it was me who told her it wasn’t working,she is so laid back and has no urgency in her at all…
I cant wait to be in the care of the Marsden,hopefully they will run like professionals and im sure they will.
I spent all day yesterday in bed and I’m doing so today,the mother in-law is looking after the boys so i can rest.She thinks if i stay in bed then my bloods will come up again,i’m not going to argue with that… Its been great,peace and quiet…
I just hope and pray i get my chemo on Friday.
Time for a cuppa…
Hope all the ladies are feeling well today
((((((hugs))))))
Shell
Hi Ladies,
hope your all well today??
Me had another crappy day !!! ( yesterday ) my hair started coming out in clumps so on with the shaver !!! looks a bloody mess , cried nearly all night , it didn’t help with Steve saying " if the medicine your having is doing this to you IMAGINE WHAT THE CANCER IS DOING TO YOU " thanks for that Steve feel much better now ! (NOT).
My sis came round I was crying in bed so she came up and brought me a bandanna to wear, it’s ok I suppose ???
And how cold is it without hair ??? ( gives me the shudders just thinking about it !!!).
Jo is your hair still in ???
Shell glad you have got your Monday appointment ,
Andie I think nearly everyone has had this cold !!! ( I had mine b4 I started my chemo ! )
Bright let us know how your appointment goes today .
And yes WHERE IS MUV ??? LOVE ( a very tired ) CARON XXX
If I remeber rightly today was the day that MUV was going to the hospital for her results dressed ready for a wedding with her husdand in a Kilt. I hope her plans have gone ahead and that she gets good results and enjoys the wedding.
I had bloods done today ready for friday and despite the cold that is plaguing me they are OK and chemo No.7 will go ahead as planned. I also saw the oncologist who tells me that the shrinkage this time time is quite small but not to worry that sometimes happens. As long as is doesn’t grow again I don’t mind. I have also got further appointments for another MRI and Ultrasound. My hospital really seem to be on the ball while I am under the oncologist. Hopefully the same will happen when I pass into the care of the surgeon.
I had a nice surprise today - my sister in law is in Australia at the moment but she telephoned to make sure I was OK and to wish me well.
That really gave me a lift.
Caron when I first lost my hair I really could not bring myself to wear my wig and lived in scaves and turbans but having bit the bullet and gone out in my wig a couple of times I have realised that people really can’t tell the difference - and my wig was just an ordinary one not a really special one like you have. Family will know but they love you anyway. Strangers will not know the difference. Be brave. At least you know that the chemo is doing exactly what it is supposed to. They told you you would lose your hair - and you have. They have told you that the chemo will work and it will.
Shell so glad that you have your appointment so quickly. I hope there is someone who is travelling to London with you on Monday. Please let us know how you get on. We will be thinking of you all day.
Bright I hope you are OK after todays hospital visit. Sounds like you stand us for yourself when needed so I am sure it will have been fine.
Bye for now. When they weighed me today I have lost a few pounds so am off to raid the sweetie jar while they still taste OK, before the next chemo session wipes out my taste buds again.
Hi all,
me again !!!
Well my sis said exactley that than ppl down the street don’t matter and also Steve too said " that cos I have lostmy hair at least the chemo it’s meant to "
I am going to my sis tonight to play BUZZ !! and something about apples she said ?? ( a game?).
I have ordered a chinese for the kids I feel pretty bad going out when they are not coming ( mind you we have never gone out new years before ) we usually have a party here but I’m sure Chloe and Owen will have fun playing the new Lara game ( and maybe Jordan if he’s not off out ? ).
Enjoy yourselves tonight bring in the new year THIS IS THE YEAR WE ARE ALL GONNA BEAT THE CANCER !!!
I woke up feeling really sad today: 2008 was a wonderful year until 5th November. I was seeing a married man (yes I know that’s not the done thing) - but it was a love affair, and I did not know how magical they could be - and I did not feel guilty as he told me how terrible his marriage was… then on 5th November my world came crashing down. The wife found out - and he had to choose, and decided to stay in the marriage (no children)- and that meant ending all ties with me. I can understand, and I know it was a difficult decision to make - but he told me all along that he could envisage me being in his life in some capacity. And now it is the total severance. I cannot stop thinking about all the times and places we spent together (and all my journeys to Yorkshire where he lived), and am reminded of those in almost everything I see. And just a couple of days later I found the lump under my arm … and well now I feel plunged into this dark and gloomy world. It is not magical any more (we wrote stories and worked on projects together) - and now I face a life with absolute uncertainty. I have more questions than answers … and everything seems so frightening. Through it all - I have come to see my partner in a different light (I thought he was going to leave me but he came back). He is truly there for me: attends all my appointments; stays maximum time in the hospital; brings me treats and breakfast in bed in the mornings. He is warm and kind, bright and funny - but I miss the spark that was there with the married man. I wish I didn’t, but I do, and those feelings just do not go away.
Today has gone by in a rush, and I’ve hardly registered that it is New Year’s Eve… this morning I was in the dressings clinic, having the necrotic tissue washed and dressed - it didn’t look quite as bad as I thought and I’ve come away with some spare dressings. I have more surgery on Friday to look forward to - and possibly another week in hosptial.
Nex then to Kings to see my consultant. He gave me the results so far, and checked out the new lump (which after an ultra sound turned out to be the drainage port for the tissue expander - so not a tumour). He did say in all his time as a consultant - he’d never seen bc spread like that - so I did feel reassured even before the scan. But the results were not so good. The tumour is now a grade 2 (was a grade 1) and the size is 4cm - with 5 out 11 lymph nodes infected, but no evidence of vaso-lymphatic growth/spread - i.e. there are no secondaries (or at least I think that is what he meant) - at this stage anyway. He is not going to scan me - said no point as would not change the drug treatment, and there is a risk to being scanned. I asked him how i would know if the chemo works - and I wasn’t really sure about the answer. I am still waiting for the Her2 ? results - but I am oestrogen receptor positive. Once they know about the Her result - they will know whether I will benefit from hormone treatment - and they will give me a more accurate prognosis - though he is saying years at this stage. At the moment he said that my prognosis of reoccurance is higher than average (or a poor prognosis). i.e. more likely to come back after the chemo. I am having 6 to 8 rounds of FEC with Tax (which he says is the difficult one). I am seeing the oncologist next week to discuss. Apparently - if it comes back after FEC - that means I will die from bc - but there is much they can do to hold it at bay… unlike reoccurances of lung cancer for example.
I asked about the cooling cap which he said I could use - but did not tell me which system they have in the hospital. I am left thinking - why have the chemo if there is a higher chance of cancer coming back? And if it is not in lymphatic/vascular system why do I need the chemo - if they got rid of all the cancer in the surgery??
And why do they not want to scan me? How can they tell if the chemo is working if they do not know what is going on inside me? He said giving me stage was not useful/possible as too individual - though he did say I am not a stage 4 as no evidence of spread.
Just feeling a bit mixed up and daunted by months ahead (about a year) - and the prospect of losing my hair, and losing it again if it comes back and I need more chemo… and if it is likley to come back why did they not give me a double mx to cut down the risk…