Best of luck for your op tomorrow, take care. Pat x
Hi Pauline hinking of you ,
just to let you all know I had ct scan and bone scan back and was told by onc one we had asked twice that they had come back clear , folder closed that was that I did try to pry more but the onc Id never meet before didnt think it that bigger deal …
Not sure if you know my story but it was 12 months ago I had first test for bc and was told it had came back clear … 6 months later I asked to be re refered but was told no need and now here i am right mast grade3 all lymps ecept one invloved and second course of chemo
so maybe I just wanted that extra reasurance this time…
Sorry to go on just having a realy bad time of it again im given injections to help blood cout and they dont seem to suit me 1st lot bloods went up to 18 and counld hardly walk due to muscle pain …
Onc said they would try different one after me asking again same statred muscle pain more sickness and it had started to pass…
have asked if I can go in on wednesday and have bloods checked to see if I can come off them early
( I didnt feel I have to struggle so much with the onc I thought wed work toghter on this )
Maybe its just me and this blasted injections making me feel low got mom on hand to help with kids if to ruff to get up 2 morro6th day in again and still feeling crap …oh the joys
Ladies do hope your all well sorry to have a moan but it does make things a little better
Love Lisa xx 3.45am lol
Pauline - hope all goes well with the op today {{{hugs}}}
Lisa - sorry to hear that you are having a rough time… 
It is hard when you feel you are battling with the people treating you… I know i often felt unsure last summer when i was going through my treatment - i was the first patient with IBC at my hospital in four years and there were times i really felt they were not taking my worries about IBC specific problems seriously (things like the skin changes etc…) the BCN would just say “oh just mention it to the onc when you next see her…” (scheduled for 6 weeks time etc…)
It is good news that the scans have come back clear… I know it is tough worrying about secondaries when so many lymph nodes were involved - but hopefully the chemo and then the rads will be doing their job… {{{hugs}}} at least on here we can all share our worries and people will understand.
Love Theresa
pauline - thinking of you today and sending ((((hugs))))
Lisa - moan away, you’re entitled kid! I’ve heard lots of people say the injections cause a lot of pain etc, my last chemo (fec 3) knocked me a lot more than the first two, I hope you soon start to feel a bit better…mary x
Hi Lisa
Hope you don’t mind me joining in but thought I would let you know that I had the injections to keep my blood levels up and suffered badly with the first one. (I had to do them myself at home). The aches and pains in my legs and hips were unbearable, not just when I moved but sitting still or lying in bed. Because my blood levels had dropped badly before them I persevered with the help of an amazing husband. Fortunately the effects were never as bad on the next 3 lots. There were aches and pains but nowhere near as bad. Also I found that they affected my mood. I was down enough with the b****y IBC but the injections made me worse- bordering on paranoid.
Take Care
Andie
Thanks so much I though it was me . im so easy going normally and the way I am speaking to the people around me that I love very much is terrible …Im so ashamed of myself …its just the injections make me fell so low
which we were close enough for a big group hugg…
Went to hosipital had blood and guess what bloods 38 so really high so yes can stop taking them good job im on the ball and desided to get blood test set up ect because by tomorro dont think id of managed getting to the loo in night with out hubbies help …
Will try and explain agin next time with onc just how much its effectin my life…
If it was down to side effects from chemo id put up with it but im not even sure why they keep givin me these injections never really suffered with infections before…
Any way they said because its so high if it was to drop quick i should still be ok…
Its just that almost a week again ive spent in bed and missed stuff with kids ect and not been a very nice person to be around
Better go and speak to hubby he even brought me flowers home …I will make it up to all of them when normal Lisas back …
Thanks again love to you all XXXXX
hi everyone
im back got home yesterday, sore but trying to do little things, sorry lisa that you have had such a bad time,i will have to go to hospital next week for results and find out what treatment i have got to have, thought after op i would not worry so much but am now sh*ting myself as to what i am going to be told next,is this normal,dont suppose we will know normal for a very long time yet,met some lovely people while i was in hospital couldnt beleive how many were coming in,one lady cheered me up,she had a mastectomy and she was a 44dd,she put her false boob in but said it kept riding up to her shoulder, she was laughing lots which helped me,
there was a cleaner there who had bc last april, she was back at work with big smiles and her hair looked great, which was great to see, am going now as arm is aching abit
wish i could give you all a hug love julie xxx
thanks lisa about the tip for sports bras, tesco are doing two for £4, if you have little boobs like me and they are very comfortable xx
Hi Julie - glad you’re progressing, give yourself lots of time, you will be very tired. What you have to get used to is that your “normal” has changed - you will never be quite the same as pre-BC. But that’s OK, you’ll get used to the new normal - and the sh*tting yourself paranoia at every little twinge!
But when I think about it, I’ve always been mildly paranoid, kind of background paranoid - maybe it’s due to having had lots of people in my family die of cancer when I was growing up - back in the days when it was spoken of in terrified whispers. But they were mostly quite old, as my mum was one of the younger ones of a large family and didn’t have me until she was 42 - and this was the fifties and early sixties, so there was very little in the way of treatment. I’ve always had that thing with every little twinge of “OMG is that cancer - no don’t be silly” but I’ve always been reluctant to go to the GP with little worries - my mum having been used to pre-NHS paying for the doctor, you only went if you were actually dying. But now I feel I have carte-blanche to go whenever I want, and pester for every test, so in a way my “new normal” is better!
Hi Julie Glad your experinece in hospital was a positive one it does help when your around people like that , I have a neighbour who has taken me under her wing she is 12months on from us with a big smile and great hair and she knows if curtains are shut not to knock , yes sorry but its all appointments now on I even tell people where to go now at my hospital I think ive been to every department they have LOL
Going today for manamagram on my one and only boob …Think because they missed it before they are being double sure on this one to be honist Id have it taken off also if there was any chance they may find it there…
Isnt it strange how we start to think and act once we have been effected by bc …
Any way Day 7 after second session and still in bed who said it gets eaisier …Son off school as well so between the two of us …
Speak soon Lisa X
hi everyone - julie - glad it went well and you’re home and resting…Lisa - had to take my son (10) for pre op assessment yesterday, he’s going in for circumcision op next week when I’m due my first tax chemo - that’ll be a fun day! But we had to hang about as I’d had a crap night and had a temp up to 37.4 and basically have an infection in my hickman line, managed to get away without being admitted as bloods were coping and sent home with oral antibiotics…so now I can’t get camping this weekend and I was so looking forward to it…sob…I hate being sensible…mary x
ps susanne - how are you doing now after the chemo? Andie - I’m hoping I won’t be given or need the injections with the tax chemo, nobody has mentioned it as yet…
Hi Kittenkat - I’m just beginning to feel OK, though my face has erupted in the most volcanic outbreak of zits since I was fourteen!
oh no susanne - if its not one thing its another eh?! Glad you’re feeling like you’re coming out the other side…mary x
I’ve regressed even further, now three months old and burping fit to raise the roof! The bottom end of my oesophogus (sp?) actually feels quite sore, and I’m having to stick to eating mush or it hurts. And even liquid sometimes feels like it isn’t going to go down. But it’s really just a nuisance, uncomfortable - I can live with it. Taken some Gaviscon. Just wondered if anyone else has had the same thing.
hi everyone, just reporting in. Im home ( with my drain in). Had op tuesday tea time, following a right cock up. i got there and they had canceled my op because a lady with same surname hadn’t turned up to pre op but i had so they had to rapidly get me back on the list. next morning (wedneday) doctor wanted to send me home, i was gutted and definatly not ready. Me and the two other ladies involved put our foot down and had a sit in and refused to go. So yesterday with the dayroom full of frightened looking couples waiting for a bed (not together obviously) we reluctantly packed our bags and trotted out clutching our drains.
Family are being fantastic but i wasn’t ready emotionaly to leave the protection of the hospital. Done lots of cying since i got home. got to wait 3 weeks now to see if i need to take a short path to reconstruction or a very long path to reconstruction…
Sorry to hear some of you ladies are having such a bad time, makes mine seam a bit trivial, i know its not before you all hit your keypads to reply, what i mean is at least im not in pain and suffering at the moment.
Off for a rest and will be on hear a lot more as i get stronger and border as time goes on.
luv and hugs to you all xxx
Holly, that’s awful to send you out so quickly. I was dreading having to come home with mine in, but fortunately they kept me until it was finished. And a very nice male nurse, built like a well-constructed out-door public convenience (as my OH would say, but not so politely) but with the gentlest hands, got it out without me even realising he’d done it!
Hi Hollymeg
I had my op back in February and although I had been warned that I would be sent home with drains in it came as a bit of a surprise to be sent home within 24 hours of a bi-lateral MX with 3 drains in place. I was then dealt with by an early discharge team who visited me very day until the drains were removed. It was good to be home and away from any risk of MRSA and C Diff but I did feel as if I could have done with an emotional space.
Look after yourself- because you are home does not mean you can pick up the threads of running the house.
Andie
hi andie, thanks for that. i cant believe that no one is really checking on me while the drain is still in. I had a quick visit from a district nurse day after my release and then she will come again tomorrow (3 days after her last visit) just got left with a number for emergancey district nurse which i had to use day after she came because my drain was leaking. Oh well just waiting for fluid level to drop so i can go and get drain removed, hopefully tomorrow.
anyway how are you doing now? nice to talk to you
Luv pauline xxx
Hi Pauline
I am OK now. It was traumatic at the time because 2 weeks after surgery I still had a drain in place because the fluid level refused to drop. The surgeon insisted it had to come out regardless because of the risk of infection. I then had a few weeks where seromas built up which had to be drained at the hospital twice a week. That delayed my rads planning. Eventually the BCN only drained 50 mls after 7 days and having checked with the oncologist the rads planning went ahead. I have now started my daily trek into London for 15 sessions under the zap machine so everything is finally sorting itself out.
At DX last August my surgeon said ‘give us a year to sort this out’ and it is certainly heading that way. Oh to be free of appointments for a few weeks.
Take Care of yourself
Andie
Not sure how all this will pan out for me but reading posts on here has given me the heebie jeebies BUT i have learnt more than from the hospital!
Consultant said my BC is high grade, 2cm big no metion of stage and at the moment they dont think the lymph nodes are involved.
I feel hysterical if i dwell on it and am finding the head in the sand approach works but is far from practical.
I have a 9mth old and a 2yr and i am 32.I have no idea how to cope with my very active daughter should i be poorly.
I only pray i dont have a drain as being a midwife ive removed a fair few and they really put the wind up me! I feel my handbag will end up being used to house a gunky bottle so my daughter doesnt yank on it!
hi Evie - have you had surgery yet or what are you due? mary x