P.S- Nicola, I’ve found this time to be one of self reflection-I’ve looked back on things and had regrets/questions etc. I think its all part of the process and so normal x
Ditto Sukie, your last tax is on my daughters 16th birthday and my 5th fec should be the day before!!
I agree this is a time when we question so much, i wish i could turn my head off sometimes, am writing it down but will tell everyone who listens feelings will come and go and dont attach too much to them.
went out to get antibiotics for my daughter, tonsils, after gp wouldnt give them yesterday.grrr. then she texts me to say ive just been sick, bless her she had made it to bathroom, thank God cos this mummy is crap at vomit!!
just found housewives of new york, daughter cant believe it!!!
and my effort today, was cheese scones because i cant eat the crappy packed lunch on the ward again, but ran out of flour so just eeked out 4!
onwards we go xx anne
Anne-well done for baking. I had a shop bought fish pie and chocolate mousse. V unlike me but I cannot be bothered today!! I had to turn off Real Housewives yesterday as my 6 year old son was getting upset at all the screeching.
Hope your daughter feels better soon-as someone who had tonsilitis constantly at her age I’m v sympathetic x
Yeah Housewives is getting good again Anne. After thinking this lot were less bitchy they now appear to be even worse.
Sukiem, the peeling feet isn’t something that happens for everyone but can be a dose lowering side effect. It has a long name or PPE for short. http://en.wikipedia.org/wiki/Chemotherapy-induced\_acral\_erythema
Hello Saphires,
I haven’t posted in ages because I am so fed up I don’t know what to do with myself.
l am coping reasonably well with the tax. My tongue still feels like cotton wool, but I’m gradually regaining my sense of taste and getting stronger by the day (it’s day ten for me). Unfortunately, my tumour is loving the chemo and still appears to be growing. Not that it can be measured properly. I was so swollen from the biopsies that the measurements they took at the time are useless. I’m currently waiting for another scan, and if it’s still growing my oncologist wants to skip the last chemo and go straight to surgery. So my last session will be my birthday docetaxel in less than two weeks.
I don’t feel ready for surgery. The plastic surgeon wants to do a complete node clearance, which I don’t want because I know I won’t follow the guidelines for avoiding lymphodema (not that I am convinced they work), and won’t ever be able to go back to my job (which is very physical) or enjoy most of my leisure pursuits. I would also like to be able to pick up my grandchildren if I live long enough to have any. He has also offered me an LD flap without implant, which will mean I have to have yet another breast reduction on my good side. No idea what I will end up looking like If I agree to the surgery. I asked for a second opinion - at which I was told I had inflammatory breast cancer and shouldn’t have a reconstruction at all! I was shocked, to say the least. No one had mentioned this as a possibility before that point.
None of my appointments seem to be scheduled for convenient times. Scans seem to take place after the oncology appointments at which the results should be discussed, my tumour marker was inserted when I was neutropenic (luckily I called in to the chemo department first so they gave me bloods tests and put me on antibiotics) and very swollen, I turn up to appointments without knowing what they are for (the appointment for the plastic surgeon came in the form of a letter from the general surgeon), and I also had one ultrasound which began by my being asked to take my trousers off… I also get copies of my letters, and most of them contain at least one mistake: nothing huge, but things like their getting my age wrong and saying I had a WLE (it was a lumpectomy only with no extra flesh - long story) or that I had some episodes of tinnitus when I have actually had it 24 hours a day since my first chemo. I just don’t feel confident that my medical team is a) listening to me or b) giving me all the information.
Apologies for going on at length. I spent ages trying to decide whether or not it would be a good idea, but in the end I decided I would press that “post” button. Otherwise just not going to post anything at all, and it has been quite a while. Hope I don’t depress anyone by being negative. I’m really not in a good place right now.
Margaret-so sorry you are having such a hard time and also that your second opinion has thrown you (very understandable). Heres the place to vent and please don’t feel bad about ‘being negative’-it seems to me that your’e getting a lot of unclear/contradictory information which doesn’t help a bit.
I know its no consolation for you but I’ve had a similar experience in some ways. A lack of clarity regarding the size of my tumour (still clueless about this). My onc thinks my tumour has reduced with chemo and my surgeon disagrees. (the ultra sound couldn’t be clear as the tumour margins are now difficult to see). In letters even the same scan results are different according to whose letter it is. In other ways the care is great.
My thoughts are that when you are dealing with several different professionals in different departments then the information and proper chronology of the appointments etc can get messed up.
I hope you are having an MRI next time as this is the most accurate I have been told? Have you any thoughts about whats happening re: your second opinion too?
I really hope you manage to get some clear information soon and lots of cyber hugs xx
Nicola-you are Queen of the interesting links! Thanks x
oh sdfmeg I’m not surprised you are feeling like that. That is one hell of a lot to cope with. Can’t believe they only just told you you have IBC and won’t be able to have reconstruction. I don’t really know much about the differences and implications but that sounds like something that should have been discussed very early on. Do you have a good relationship with your breast care nurse? COuld you list everything you’ve said here and it address it to her? You need some answers and attention from your team. It can’t help that you have a long journey to get to the hospital either. The thought of surgery sooner than expected and with different choices than you hoped for must be very tough. I hope you can get some answers and they help.
Just one point on the lympodema. I was chatting to the lady who gives massages at my hospital about my worries. She had full lymph clearance whilst I only had 4 removed. We were discussing our levels of fitness, both complaining we had lost a lot of it. I said I was worried about lymphodema and maybe causing it from lifting weights and she said not to worry because I was too slim and active to get it. She said the only people she sees with lymphodema problems are overweight. I don’t know if this is accurate or not, and I don’t want to upset anyone who has the problem or knows someone who has, but it did reassure me somewhat - hoping this doesn’t now backfire and I get it!
Nicola x
hey Margaret?? guessing. sdfmeg. all the above sounds a complete bloody muddle. is there not a bc nurse that you can shout at? we only have one and its a case of leaving messages. but she could at least access all your details and you could give a list of questions.
but thats the practical stuff and i dont understand all of it.
I wish I had some wise words, especially as you have worn this bloody tshirt before.
and you can write whatever you want, i hope it may have helped you a bit just to get it all out, much love and support, i cant add much more, the other sapphires have been so good on my teary days, just keep writing.
anne xxx
Margaret, I am sending you a huge hug right this moment. Sorry if I squeezed too tightly!
You are going through too much confusion to be able to get a handle on things. Do ring your BC nurse and ask for some clear explanations of all that has been said/done. This just isn’t fair… they should be clearer in their discussions with you.
Make sure you know exactly what your diagnosis is because that last conversation of IBC might have been wrong - from the messy way they seem to be working they could have made a mistake!
Maybe write down all these inconsistancies and go through them one at a time until you get clear answers at your next consultation? And perhaps ask the BC nurse to be with you for support?
I have no idea what else to suggest… I am angry on your behalf, and upset for your situation. This journey is hard enough without people playing with our minds too.
As for the Lymph nodes… could they do a Sentinal Lymph node extraction - the ones draining the duct of the tumour area, and test that for cells? That is what I had done whilst having my WLE. I didn’t know until I awoke from the operation whether I had full removal or just partial removal. It turned out the sentinel nodes showed no cancer cells so they could leave my other nodes alone, so I was fortunate.
You have big decisions ahead, so please don’t feel you can’t share here… however you are feeling. Someone on the forum is sure to have been in a similar place and may be able to offer advice or simply comforting reassurance.
Get some rest, and try to talk it through with a Forum BCC nurse if you can’t reach your own Breast care nurse.
Hugs,
June
Well guess what I spent most of the day at the hospital yesterday, even thought it was suppose to be only 3 apmts in morning. Told chemo nurse that I had bad ache in my leg, suddenly I was referred to onco consultant and wizzed off for ultrasound.They found out that I have trombosis in back of my knee and calf. Now I have to have injections of fragmin every day for 6 months! They quite hurt afterwards aswell, my hubbie is going to do them. I am now really fed up to the teeth because they say Im not up to the chemo on friday so will have to delay for a week.
Bless you Story so far, but veryglad you were in hospital and it wasnt ignored. At least injections can be done at home. a Scary time so sending you great hugs and chemo will get back on track. i know how hard it is when its cancelled. but hang on in there. you are allowed to feel fed up.
hope you are gentle with yourself today, xx
Hi sapphires sounds like we’re a bit low and having crappy time. I am sorry everyone. I am sorry I haven’t posted for a few days. Been a bit low too. Mentioned to once again about the various episodes of dodgy dizzy spells, vertigo (room spinning) random moments of falling over again. Nodding of the head and yes. Probably low bp(although did not bother to check bp) and probably size effects from chemo, steriods and anti-sickness. However when asked if anything else I mentioned headaches, pressure and cold feeling on right side of my head and occasionally having episodes of walking like a drunk person. Tone changed and had a basic neuro exam told afterwards I need an urgent brain scan. Great all I need before Christmas. I was feeling positive with last chemo on horizon. Now I feel peed off! I am sure all must be fine. Previous scans in August all clear and been having chemo since then. So keeping everything crossed.
Dear story so fsr sorry you are having a cruddy time and your chemo was deferred. I know we hate having the poxy chemo but it is worse having it cancelled as we just want to get it over and done with. So will be hoping and praying for you that all will be okay for next week. Regards the Fragmin. Are u injecting into your tummy? I have had to do this with both FRagmin and the gcsf for the bloods - I found it painful but now numb the area with an ice cube for a few minutes minutes before I do the injection and it really helps - no pain.
Dear Margaret I hope you have managed to speak to nurse or someone re your situation. I think, as you know, you have been treated very poorly and someone needs their arse kicked. I will try and message you later in the week to catch up.
Anne, I hope all ok with you. Thinking of you too and hope you are keeping your chin up!
Last chemo yesterday. Thank goodness! All usual se’s present and accounted for. But hair growing back a bit on my head (although there is flipping grey in there - just typical) so should be thankful for one thing at least! Going back to bed in a bit -notup to much tonite. Glad the chemo is done - never want to do it again! Sorry girls,but it is poo! Hugs to all you sapphires. Keep sparkling.
Well done spookymoo on finishing chemo. That is brilliant. It is a shame that it has to be marred with a brain scan on the horizon but sounds like you are coping with that news as sensibly as possible. You and everyone here constantly amaze me with the way they are getting through all of this.
Yesterday I attended a very good information talk at Breast Cancer Care HQ on recurrence. There were a few things discussed that I didn’t know before on what to look for and the difference between local, regional and secondary recurrence. One thing I found particularly reassuring was the news that breast cancer doesn’t spread sideways into the other breast (alhtough of course there is always the possibility of a new primary cancer as there is for anyone). For a while I’ve been thinking perhaps the best thing is just to have both boobs chopped off but the talk made realise why that isn’t recommended because it doesn’t actually reduce recurrence risk at all.
I’ve been feeling a bit more positive. In less than two weeks I will have had my final chemo and will hopefully start to feel better and can maybe even build my fitness back up - something I’d really like to do. I’m even wondering if I could sneak a last minute bargain week in the sun between chemo and rads? Is that just crazy?
Nicola x
Hi Nicola thanx for your post. I am sure all is good - just a bit of a bummer - life is definitely a rollercoaster at the moment - but not in a Thorpe Park kind of way -and definitely couldn’t do a rollercoaster at the moment - just driving round corners sends me round the bend at the moment!
I had a great chat with my lovely dishy surgeon last week - was very positive when we had finished - and both he and the breast nurse reassured me that, as you say, the cancer doesn’t tend to traavel sideways and having a healthy breast removed as a precaution is not necessary (unless of course there is a genetic basis ). I was very much thinking I should have the whole lot off but after our chat felt better of it. At least one is better than none and I am hoping, if I need a mx, I will get a nice result on reconstruction - although nothing is confirmed yet. More scans tobe done first! All good fun! Lots of contrast!/ dye will no doubt be required for the head one and lots of gel for the ultrasound and lots of horrible painful squashing for the mammogram! Happy days x
Glad you will be having your final chemo soon. Hopefully you will be feeling ok for christmas. Haven’t been feeling too festive but we plan on getting the tree and decorations up tomorrow -Santa’s Grottto here we come! A break in the sun souds a blooming good idea -go girl get some sun!
Definitely need some sun - its blooming cold and looks like snow could be on the way! Take care and stay well. X
good to read all your posts, will try the ice cube later, spooky, the antiseptic wipes just make me gag, reminds me of chemo, dressings and all the shit that goes with it. I stand there like a complete tit,
Margaret, i hope you get some news this week. and keep pushing.x let us know, i have been thinking of you xx
Nicola go for the sun, we can be there in spirit, and last chemo, how lovely,
all se’s from fec 4 seem the same, but its only 4 days.
am still holding onto eyelashes, wonder if they will go next with eyebrows,
am trying to just stick with one day at a time, and am doing okay today, went along the beach, shimmering sea, soft sand, but no seay smell. they have those megaphones, far apart from each other, where you whisper and the other hears you. just me an oh, i dont give a shit if i look silly, i sang ( well thats a joke cos i have no tone at all) santa got stuck up the chimney. and husband did a scary horror voice!!! Im normally very serious but it was good to be silly
also had long chat with friend in rome via skype and she made me sing with her too. you cant buy that therapy, and i dont laugh out loud very much. she wanted a version of o little town of bethlehem, it was dire on my part but made me giggle
nice to write something stupid but you have been so good boosting me up esp last week.
big hugs to everyone, and esp those feeling crappy 
another day closer to the end of this, xx
Thanks amd66 and spookymoo for your good thoughts for me. The fragmin hurts after it has been put in but will try ice cubes sounds a good idea.
Had news of new dates now for chemo, on 19th Dec so not too long to wait to get started again, I suppose this gives fragmin enough time to work and thin my blood down.
Understand that DVT can happen with chemo, though I don’t remember reading this anywhere.
Was going to go food shopping today but decided to do it on line as don’t want to catch anything esle to make me ill again.
Just still a little bit fed up but have to remember that my last chemo will now be 30th Jan so will try to look forward to really feeling better then. Still fed up though!
story so far, our last chemo will be similiar time then. after posting my funny stories, i started to get fed up too and teary, bugger, just gonna let it out and maybe it was because ive had some good moments this weekend. and i didnt sleep well,
One bloody minute at a time. got a good book that i started last night the Beach cafe, so I will get stuck into that xx
hiya girls
spookymoo am so sorry to hear you’ve got to have a brain scan just before xmas - that can’t be easy. my onc told me that it’s really unlikely that a woman with bc can have spread in the brain unless they’ve already identified mets elsewhere in the body as it’s one of the last areas to be affected so i’m sure you’ll be fine. will be thinking of you.
my sorry saga continued last week with another ten hour day in hospital on fri - had to go in to get my bloods checked because they were concerned about my oral thrush (felt like i swallowed an overflowing ashtray - ugh!) then they discovered an alarming red mark around the area my chemo went in and were concerned it could have leaked into the surrounding tissues. what’s the worst that cld happen if that’s the case, i asked - oh you could lose your hand the nurse replied cheerily!!! so was referred straight away to st thomas’ and had to schelp up there only to be told after several hours wait it’s just a routine infection (more antibiotics). two hospitals for the price of one - lucky me!
my healthy eating has gone to ground - burger king on the way home from the hospital, brownies and pear tart on the weekend. and now it’s christmas looming. oh dear.
nicola/keyfeatures lucky you finishing your chemo before xmas - you should definately celebrate with a wee trip in the sun come the New Year. i shall join you in spirit if not in person 
hugs to you all,
sx
Hi InShock, glad your don’t have to lose your hand. Love the way they just drop in these new delightful side effects. Did your thrush clear up? I was given a 10 day course of antifungal tablets (similar to the canesten tablet you can buy over the counter but stronger and for longer). That seemed to have got on top of it and I haven’t been troubled again this cycle. It was really nasty, not like normal level thrush and I feel much better for having got it out of my system.
Nicola x
Poor you, Inshock, what a worry. glad it wasnt anything major.
havent anything else to add, havent had any energy today but havent been able to sleep either. wonder if it is building up now it was number 4. cant stop yawning xx