Good morning from Chateau Despair…
just kidding - the coughing is improving, and the events of last week now receding into memory…
Got to go and see the oncologist this afternoon for pre-chemo appointment - FEC 4 on Wednesday. Am considerably less worried about FEC 4 now i have the Omeprazole, I have t osay, and I plan to follow Cressida’s (or was it someone else’s??) guide to dosage and take 2 every day, rather than one, given the severity of my symptoms last time. this site is so brilliant for pieces of practical information like that - otherwise it would probably not have occurred to me that one could increase the dosage.
Mandy, Cress, Border Collies, Hamley, H144, QD - many thanks for your answers re key workers or lack thereof. The wide variety of experiences is very interesting.
QD your experience sounds v.similar to mine - emergency line not working, no reply from chemo ward, etc etc. It really s***s, doesn’t it? amazed that you and H144 don’t have the Big Red Book, which is very helpful when you’re panicking. If you like I could make you both colour photocopies of the pages with the symptoms charts in green, amber and red -they’re very , very useful.
Cybele - please let me know if taking the Omeprazole before putting any steriods in the stomach helps - I have started taking it again in the middle. Like you, I did not associate the feeling in my stomach with indigestion. I still feel like something died in there, and it has been worse on cycle 3. Truly fed up of it.
Took to bed with Mr Zopiclone last night and actually slept until after 10am. Don’t plan to wash or dress. Have lost patience with pretending it is not too bad and have started telling people just how sh*t it is. This prob means I have scared them away. Oh well.
Hamley - don’t leave the process of asking for the test till the end of chemo - it takes about 8 weeks to get an appointment and then another 8 to get the results - what I meant was you can delay the actual results until you want them, but you can’t hurry them up. Prob need to ask your Onc not BCN. I want mine at the end, but not so late that I have tried to restart my life and them find that I can’t.
Hi all - hope youre all ok. Results of my scan this afternoin - am very very nervous.
Cybele that would be lovely of you to send the relevant pages of your red book. Thanks for the offer
Hamnley - my degree is in theatre studies I went to Drama School and my current qualification is in Drama and perfornance. Theatre studies goes into the background. We’re studying naturalism at the moment. I love Ibsen and Chekhov but am irritated by Strindberg and Churchill.
The man who invented VAT returns should have been strangled at birth!!!
Lolly - hope all goes well
QD
Hi Crackers,
I’ve been dipping in and out reading all your posts over the last few days but have been struggling with broken (new!) laptop and the last of my TC.
So impatient to get back to some sort of normal though I know that is quite a way off due to Herceptin/rads/Tamoxifen. God it’s a long journey.
The drugs have hammered me hard this time and I have just given up and gone to bed. I feel like a fractured person, splitting into two and observing myself from a distance. This happened with my first tax too. Such a weird feeling.
Anyway I forced myself to get out for a walk. Much as a snooze is nice, I’m not sure it’s helping me fight through the sore legs. Anyway, walk over now. Legs are throbbing but hopefully the exercise will have some benefit.
In terms of keyworkers, Cybele, I had a breast nurse assigned to me at diagnosis. I was a bit of a reluctant patient. As soon as I saw the nurse I knew the game was a bogey!. I dug my nails in and was determined not to cry. I felt almost under pressure to weep and demonstrate my complete brokeness. This is my ridiculous stubborn streak.
Later when I came in for surgery the breast nurse appeared and chatted generally. She stayed well past going home time and really helped take my mind off the surgery. When I had my second surgery she was there again just a familliar presence making sure I was o.k and chatting about her family etc. She came onto the ward after surgery to make sure I was o.k. This woman went way beyond what I would expect the NHS to provide. I was treated as an individual and not another anonymous. patient
It would have been great to have had someone similar to chat to through chemo. I was not overly anxious about surgery (though I was a nervous wreck about the anaesthetic) and have coped so far with the idea of ‘cancer’. However the thing I have struggled with is chemo and hormone therapies. I loathe pills. i managed through my middle child’s labour with one paracetomol because I couldn’t stand the idea of any sort of drug, gas, whatever. (My friends often point out that I’m not averse to large quantites of wine from time to time so I realise I’m being a bit hypocritical). To have a named person to chat to over the phone without feeling I am dragging them away from admin of drugs or an emergency would have been great.
Hope everyone is getting through the days with some sanity intact. Cressida I know how you feel. I am now slouching about the house wigless and God help any unwitting teenager that happens upon the scene. I too am telling people I feel like shit, yes, even though I’ve had my last one!
Maire and Cressida. Both your posts struck a chord with me today. I am feeling broken. Tax has taken its toll. I have been in bed for 2 days and feel just shocking. It’s the first day of half term and my daughters have been sent to a friends while my poor 9 year old son has seen me suffer all day. Not something a child should see. I have tried to hide my pain but it has been really hard. This cancer is s**t!
QD - hope your scan results were good.
Lolly - hope your mil looks after you.
Think we all need spoiling!
I hope to be more upbeat tomorrow.
Hugs to all x
Yes! Yes! Yes! the left tit has something called a fibrodenoma in it. Its sometimes caused a breast mouse! Well onlyIcould have a flippin mouse in my t**!!!
Any way I dont care - it aint cancer!
I really don’t know what i’d have done if there had been cancer in both boobs. I’ve got my fight back and cancer you better start running!!!
To the girls on tax - hang on . I’m now day 11 after tax 3 and there is light at the end of the tunnel. fec beckons now but I dont care. Bring it on!!!
QD
Hi everyone
QD - so pleased for you that the scan was good news.
Maire, Cressida, Mandy - after foolishly saying I was OK after Tax yesterday from last night things have gone downhill. It’s also taking it’s toll on me and I feel s***. Not only the aching and feeling spaced out but my sore mouth has got worse - just got back from an emergency GPs appointment (as advised to make by the chemo unit when I phoned earlier) and got Nystatin & Difflam & yet another blood test tomorrow. My chemo brain is getting very confused about the times of taking all the pills & potions!
Cybele - the Haven sounds lovely. I am going to try to go to the local support group tomorrow. Breast care nurses are going to be there to talk.
Hilary
Deeply, deeply p***ed off.
They’ve postponed my chemo for a week because my s***ing neutrophils are down to 1.1 - apparently when I was in A&E last Thursday with the fever, they were 1.5. The oncologist said the hospital rule is that you can’t have chemo if you are under 1.5.
In one way, though, it’s a relief - when I walked down to the hospital this afternoon I felt so weak I could barely put one foot in front of another. I was thinking , this is weird, my cold is much better, but now I know why.
Am still a bit confused about how the neutrophil thing operates - are they low because thewy’ve all been used up fighting off the infection?
Not that it really matters - I’m very weak, so are my white blood cells, so no chemo. Just have to wait for them to recover…
1 extra week in the chemical prison…
Sorry to hear the rest of you are feeling so rotten - Cress, Maire, Mandy , Hilary - hUGE hUGS xxxxx
but YAY!!! for the good news, QD.
It is SO NICE to hear a piece of good news…
Oh, and I saw this very nice research docotr this afternoon re her chemo study, and the first thing she said was ‘you’re looking well’ and I just wanted to STRANGLE her
QD - I am so pleased. Thank God for some good news. Whoop whoop. xxx
I am really trying to convince myself that, today, I should feel better, as that is how it worked the last 2 times, but this time has been worse and started earlier. Have to drag self to hosp to get blood test. My armpit seems to be swellling up, probably cos I have done nothing for 3 days apart from take pills that help me do nothing.
Cybele - sorry they can’t poison you this week - but it does mean you might get the strength to actually strangle the next person who says “you look well”. No-one would convict you. You would have hundreds of character witnessess and the message might get out there NOT TO SAY IT. I am starting to think that this is the reason the universe does not want you poisoned this week. But then, I have taken a lot of drugs…
Hugs to everyone else suffering this sh*t storm, xxxxx
Can I kill the person that says “nearly there!” ?
Day 6-waving white flag.
Oh and can I wreak my vengeance on the next person who says, “When do you think your hair will grow back?”
Hi All.
Cress, what a fab link, it’s all so true.
Mandy, I think that chemo nurses are trained to say ‘nearly there’ and ‘half way there’ etc., they all seem do it, but they’ve been so good otherwise that I let them off with a (forced) smile.
Cybele, I don’t have a red book either and it sounds like a very good idea. Please put me on your list for sending a copy to. Sorry to hear about the delayed chemo.
QD, that’s great news and so good to hear some positive in all this horror.
Lolly, I hope it goes well today. I’m slightly jelous of you having someone to look after you for a bit, a bit of TLC goes a long way.
Mandy, Maire, big hugs.
I spent lots of time on the crazy sobbing lady bench yesterday. I spoke to my BCN about the possibility of having a bilateral mx after chemo firstly because of my family history and secondly because if I have one boob removed I’ll have an H cup one side and absolutely nothing the other. I fear that finding a bra is going to be impossible; I’ve looked everywhere for a 32H mastectomy bra and there’s nothing. My BCN told me they do larger sizes in M&S and yes, they do, they they have one bra in 32F that’s underwired which we’re told not to have. That’s 4 sizes too small and the largest I’ve been able to find. She reassures me that having a prosthesis won’t be a problem (she even seemed to think I was being a bit silly; of course they will!!!) but if that info is as good as her M&S info and I only get to confirm that after surgery my life until a recon (hopefully to a D cup) will be rubbish. She couldn’t tell me how long it would be until I’d get a recon. She’s made me an appointment with my surgeon who though he’s great at surgery has the bedside manner of a lion. I feel that she’s put me onto him to get rid of me on this subject; he’ll find it easier to say ‘no’. I’m also told that I’d have to have counselling before a bilateral mx. Well if that’s the case I’d want it NOW so it doesn’t delay my surgery, but I think that’s going to be a way of making me go ahead with one removed. Am I being paranoid? Sorry to go on, but there are two boxes worth of very soggy tissues in my bin.
Thanks for listening.
Hamley - I wore 36FF or G before surgery. I am still surprised that Bravissimo has not gone out of business. What they are not telling you is that masectomy bras are different. The sizes make no sense and have nothing to do with your previous size. A very nice lady at the hosp prosethetics dept got me bras and and my prosthesis. I have one that is 40 DDD (who knew triple D existed?) and another that is that is 40 D. So, deep breaths, honey, you don’t need a freak bra, you just need one that has nothing to do with the one you are used to. I will personally come bra shopping with you if necessary.
Just got back from playing hunt the vien for my blood test, had to have a baby’s needle put in my wrist. Yeuch. And that was after she stuck it right in the bruise left from last time, but couldn’t get anything.
Now I have really evil chemo farts - I hope this is the start of getting rid of whatever cralwed into my tummy and died. At least it cleared some space for me to sit down in phlebotomy.
Forgot to wish Lolly good luck for chemo, and make the most of being looked after, xxx
Thanks for all your kind wishes re my breasdt mouse.Henceforth : left tit is called Mickey and right tit - Damien!!!
Good luck Lol
Sorry Cybele that youve got to wait a week more to be poisoned but if youre not well it aint worth the risk. i emailed your email from your blog so that you could send me the chemo book pages. However I fully accept I am useless on a comp so let me know if you dont get the email!!!"
Cress- that s interesting re the bra. I just kind of assumed Id be able to wear my existing ones. Ive not had my surgery yet so maybe all that will be explained. Loved the chemo fart comment. Ive been farting alot lately as well.
Hamley - if you want a bilateral mx - tell em. dont take any nonsense. Its your body and your life and if tthe docs a lion - be a bear!!!
Having told you all that day 11 post tax 3 there was ligfht at the end of the tunnell - sorry I lied. Ive srtarted shedding skin again from my fingers. Yuk! Aveeno cream at the ready!! hope Mandy and Maire will feel less rubbish soon.
QD
Hamley
I am neartheir the same place as you re surgery. Have last Tax on 4th March so assume surgery ASAP after that hopefully. Got an appointment 20th Feb withsurgeon and I am going to reques double MX with immediate recon. Lets see how far I wll get hehas done chemo first to shrink and as onc could not find the 5cm tumour last Friday I think he is just going to suggest lumpectomy although he knows I want MX. Onc seems to think they could immediate recon as looks like no rads.
My reasoning is I have had BC both sides now with lumpectomy first time I want to make sure I don’t get it back again I really could not go through this again. Also family history and as TN I am high risk of BRCA 1 or 2. Genetics have got my blood and going to try an get an answer before surgery but not sure there is time for that. Genetics also explained that there are other genes out there that they do not fully understand and could possibly have one of them.
Wish me luck folks and as always would welcome any thoughts on this.
hugs to all Wendy
Finally have the brain power to read the posts and remember them for a few minutes, so before I forget, hugs to Mandy, Maire, Hilary and Wendy.
Wendy - I know what you mean - I can’t do this again - if they have to cut everything off to avoid possible chemo again then so be it.
QD and Hamley - the Mx bras seem to be made in eastern europe and the sizes really are random so no panic - you can get a fitting and then order the ones you like off the internet. There are loads available and I wouldn’t waste my time at M&S. Just need to persuade Bravissimo to move into Mx bras…
Cybele - glad you are making the most of your chemo holiday - what else have you stolen from R to eat/drink?
Starting to feel a bit better finally, whatever died in my tummy has mostly been farted out and now I have to go and face Gem no 3b (actual poison no 6). Good luck to me (and anyone in range of my farts), xxx