I have my first chat with oncologist tomorrow afternoon, so I am feeling quite nervous about it…it’s strange, but now I really feel like a cancer patient, is that odd??after all, i have had my op, i’m on the arimidex, and it’s really only just beginning to feel ‘real’.I haven’t a clue what to ask them tomorrow, other than what kind of chemo will I be having, what se’s are likely and when will it all start (presumably next week?).Had a chat today with the children at my nursery, explaining that i may be losing my hair,( they knew i was ‘poorly’ and had to have a bit of time off before xmas) so i will be wearing hats or scarves to keep me warm, some of them thought it was very funny to think i wouldn’t have any hair (they are only 2, 3 or 4 years old, bless them) .I agree with Sue, got to be brave now!
Hi Naria good luck tomorrow it will be ok and you will be given lots of information. I am like you went through op really well and it only seemed real once the treatment started. I start my 2nd chemo treatment tomorrow.
Hi Narnia
Just wanted to say the very best of luck with ur onc 2moro. Mine is on Friday morning so I know how u feel, I think it’ll feel more real to me when the old bonce becomes naked!!
I have a little pad handy and every time I think of something to ask him, I write it down before it goes out of my mind (my lovely hubby’s idea bless him).
I’m a bit confused about the ‘clear margins’ mentioned by my consultant at my ‘results’ visit, so jotted it down to ask onc about.
Also I’m prone to cold sores, so jotted that down too. I also want to know about possible further scans?
Just a couple of ideas maybe u could make use of?
Take care and best o luck to anyone else just starting down the bumpy chemo road, it’ll all be worth it to reach our goal of being c free !!
Loads o hugs n strength
Sue x
thankyou both! Susie, I apparantly had excellent clear margins, so I am confident that all the cancer has gone from my boob,even though it has ‘leaked’ into my lymphs, but will ask the onc about that tomorrow, it’s a good question, which i probably wouldn’t have thought of if you’d not mentioned it!. I have found a site which suggests questions to ask, mostly common sense, such as 'how will you/I know this treatment is working? How will i receive the treatment and who ill be with me when i have it?What side effects might I experience? How many treatments will I need?..all things i expect they would tell me anyway, or give me an inevitable booklet to fill my folder with!..
Another good point Narnia, I didn’t even think about the question ‘is the treatment working’ This is now duly noted on my liddle pad!! The onc is going to have his blimmin work cut out with me and me pad 2moro!
My consultant told me I have 1.5mm clear margin, but all 18 lymphs removed were affected - not sure if this is good or bad and at the time just sat there wide-eyed and gormless like a rabbit caught in the headlights and didn’t think to ask!
My op site is still a bit tender and swollen and still a bit of fluid in there so a bit concerned about that…just hope this doesn’t delay things.
How are u feeling Alison? Hope you still feel ok after your first treatment chuck.
Hope ur managing to stay a bit chilled Pat … big hug for u.
My thoughts are with u both today Narnia and Louise.
Speaky later ladies
Sue x
Morning everyone who’s posting on this thread! I’m so glad i started it, as i was nervous nobody would reply to me!!!
Anyway, the nerves are definately kicking in this morning! I’ve cleaned the house, done the washing and made enough chilli to feed the entire close for a month!! Just in case i feel like poo!!
It’s very true, i didn’t feel like a cancer patient before but now i’m about to begine the chemo it’s beginning to seem really real - i sort of felt like i was on the outside looking in if that makes any sense?
My little one has been having some help at school with a learning mentor to help him understand whats happening with me. Weve been really honest with him as we felt it important for him to know, but we didn’t want to frighten him.I met said lady at school yesterday, she came and introduced herself which was lovely and also asked about me ect ect.I told her things had gone somewaht quiet as i was waiting for RX to start today, but felt things would be different after - for a while anyway. She advised that she knows a chap woh has done lots of work with cancer patients and families, and would i like her to contact him, possibly to speak to our son and possibly us 3 together? I thought it was a fantastic idea, i’m really conscious for Thomas and us as a family.I think things often get unsaid as we are frightened of talking to much to eachother for fear of speaking out of turn or saying things that in turn will worry. This is why this forum is just fantastic, we are all in the same boat and although weve never met we feel as if we are supporting each other. Well, i think i ought to try and eat something, although the tummies in a turmoil,
Post again later this aftey,
Hugs to all,
Louise x
Hi all,
Still feeling quite good but seem to be quite tired. Not been sick or even felt sick so tablets are doing the trick. Only problem I have is chronic toothache, was due to have treatment when I had to go in for first op, then couldn’t drive ,so still had to cancel, then 2nd op which meant no driving. When I did feel better they couldn’t fit me in. Hoping to go a week on monday, chemo nurse says it isn’t a good idea, but they don’t want me to take too many paracetamol as it can mask high temperature. Shalln’t have scrape and polish just fillings if I can bear it!!!
Washed my hair for first time today, bit cold though when you aren’t supposed to use hairdryer.
Lady coming this afternoon to check house for the rescue cat we are getting to keep away mice and rats, although rat might have gone as biscuit left out last night hasn’t been touched.
Like you Louise I have a young child who doesn’t really understand what is going on, although she is 10 she has a mental age of about 7 due to her being severe epileptic, thankfully very well controlled with drugs, but she also has ADHD and is like a live wire when she gets home. I tried to get some help for her, but it is very thin on the ground and you have to fill in countless forms so I’ll leave it for now, if the treatment gets worse I’ll try again. At school she is very well supported and as I work there aswell I am kept fully informed of everything.
Other two kids, 17 and 15 need I say anymore, typical teenagers!!!
Any way must get on and order some bandanas to cover hair when it’s greasy.
Good luck to you all.
Alison x
Hi All, Well had 2nd chemo this morning, took half of a lorazepam which is what onc gave me to help with anxiety and it got me there and I felt quite normal - it did the trick. Nausea just starting to kick in but I can take some meds soon. Hair coming our thick and fast - little bald patches appearing. I ordered a fleece hat from ebay, it’s handmade and the lady makes them slightly smaller than average size which fits perfectly. All other hats I’ve tried - except pull-on knitted ones which make me look like a robber! - tend to be a little big for me but these ones are perfect.
Loise, I know EXACTLY what you mean about it not feeling real. When I think I went thru 2 lots of surgery, apart from the biopsies and getting results, discussing chemo and radiotherapy yet as soon as I faced the first chemo session it was like it all came down on me like a ton of bricks. Also, when your appearance changes, it can affect not aonly how others see you and how you see yourself. It’s no wonder we’re up and down all the time. All the best for today, it’ll be fine.
Sue, keep writing on the pad - the times I’ve forgotten something and then remembered when we’re out of the room. Breast care nurses are good - I’ve rung them before when I’ve wanted a query answered and if they didn’t have the answer, they phoned me back when they did. Use all resources as that’s what they’re there for - us!
Love and hugs and luck to all,
Pat x
Hi everyone
I’m so glad you still feel ok Alison, apart from being tired. Tiredness I could cope with, it’s the dreaded sickness that I wouldn’t relish. But poor you having to cope with raging toothache, hope you can get your fillings sorted, you’ll feel tons better not having that awful pain.
Can I ask a daft question, why are you not supposed to use a hairdryer? is it because ur using the cold cap? Hope your new cat works out for you - we have a cat called Jess, I found her at work in a skip (I work for a waste management company) and she’s mad as a hatter but lovely natured.
Hope you managed to eat something Louise before your chemo, they reckon it’s best to have something inside you prior to treatment and drink tons of water too. Good luck!
Pat I’m so pleased the half a tablet worked for you, it’s bad enough having the treatment without panic attacks on top.
Isn’t it strange how we all really feel the reality of this disease when we’re faced with the chemo part of the treatment - the surgery kind of fades into the background somehow and that in itself isn’t a walk in the park!
Family and friends comment about how marvellous I’ve been so far throughout this, long may it last, just hope it doesn’t go pear shaped on the chemo!!!
Well ladies will speak again later. Loads of hugs to everyone
Sue x
Hi everyone,
Thats the first one over with! had an awful wave of sickness come over me while i was having it done - it felt terribel, then followed that feeling you get when you drink your first alcoholic drink a bit too fast, really swimmy head - anyone else had that? typical of me to get one symptom they didn’t know about!!
Catch up later, off to bed in a bit,
Louise xxxx
well…what a trial today was! To cut a long story short,i didn’ find the doctors and nurses as nice in the oncology unit as the breast unit.NOT ONE smile from anybody, not one.
I am going to be having TAC, and am not sure how i feel about that yet, and i won’t start for another two or three weeks.Doc told me my hair is too long and too thick, so i MUST go and get it cut very short(!), I won’t be though.I came away armed with 6 cycles worth of pills to take, an armful of leaflets instructions that i will need injections for something or other (didn’t really take in what for??), and which i will be able to give myself.She said they are going for cure, not holding things at bay,so that’s good,to say the least.She also told me i can’t work and i should forget about the long weekend hubby and i have go booked o Holland in march…she said she will write to the company and get my money back, so i told her we’re GOING, I don’t want the money back, i want the break.She chewed it over a bit then said, ok life is for living, so go for it.I don’t know…i was all geared up for being told to probably come back next week for session 1 and now i have to wait 3 more weeks!
Hi Louise, Well done! I didn’t get that particular se myself, and my nausea doesn’t tend to come in waves it’s just there. Get lots of rest and take each day as it comes and you’ll do great.
Narnia, 3 more weeks! That’s not fair. Sorry the docs were as nice, I have to say, probably without exception, everyone I’ve come across at guys has been excellent, and I feel for you because these people are the ones that are in charge of your treatment so you need to have a good rapport with them. Remember, it’s your body and make yourself heard, they’re there to help you. U
I understand you wanting to go to Holland, just see how you feel once the treatment has stated.
Sue, I think the hairdryer thing IS to do with cold cap. I’m calmer today about hair problem (good be the magic pill!) but I don’t feel panicky at the mere thought of it coming out. It’s a fab excuse to buy new hats, pretty scarves etc and, if people have 2 different wigs, its great fun to confuse the neighbours!
We’re all moving in the same direction and it’s a positive one. I’m debating on whether to chance eating now so will close.
love and hugs to you all, and keep strong, Pat x
PS Tears are a must too and can give a bit of relief - it’s really hard being upbeat all the time and showing everyone else that you’re fine and coping well. I find I’ll cry at the most unexpected thing but feel a little better afterwards. And then I’m asked ‘why are you crying’ because everyone thinks I’m doing so well all the time.
x
Hi all
Well done to u Louise - that’s one down! Maybe the sick feeling was just your body’s way of complaining a bit cos of the shock it’s just had with the chemo. It seems people do react in different ways.
Have a good night’s sleep and hopefully you’ll feel better tomorrow.
3 weeks Narnia, gawd I bet u didn’t expect that but if they’re going for cure then the wait will be worth it if the end result is the best. Not sure what TAC is or the injections - sorry I’m not up to speed with some of the chemo abbreviations yet.
Can’t believe that the oncology unit staff were so miserable - I’m sorry but as Pat said u are putting your trust in these people…personally I would have had to say something cos the treatment is hard enough without their attitude sapping your confidence too.
Ooo sorry if there’s one thing I can’t stand it’s bad manners and attitude for no reason, especially to people in a vulnerable position. Sorry rant over.
They may be ok nex time and they were just having a bad day today. See what happens on ur next visit.
So pleased you feel calmer today Pat and that the half tablet worked, lets hope you’ve cracked it.
You’re absolutely right about having a good cry now and again cos it IS hard work sometimes trying to be brave and strong… for others really.
When I was in hospital just after my surgery, my hubby arrived at visiting time all happy to see me and what did I do… ended up in floods of tears, sobbing and everything!!! No particular reason (apart from the obvious of course) but it just had to come out. Did feel tons better after though.
I’m having an early night as got to be up with the larks tomorrow for first onc app’t.
Nite nite eveyone and look after yourselves
Sue x
Hi All
This is a great thread. I start chemo on or around the 27th this month for 6 months. Onc appointment on the 20th to find out what I’ve got myself into. :0) It’s a tad scary, but at the same time I feel strangely “up beat”. Sorry, I’m a terrible one for film quotes…
You all sound so incredibly positive but also working in and dealing with the reality. I met up with a group of fantastic women under Another Newly Devastated from Bury St Edmonds. We’re going to be walking the path together too. I am stunned at how much support this site gives! I also feel a lot better since reading your early experiences of chemo. I feel a lot more prepared. Thank you.
Carole
Hi, just reading through this thread, hope you don’t mind! I saw my onc for the first time yesterday and had the same experience as you Narnia, found the whole experience horrible (apart from the actual doc who was lovely) I also have to wait for a date to start chemo FECx6, I have an appointment to see the chemo nurse next Wednesday, & she will give me date to start chemo. I hope it’s not the one I met in the chemo suite cos she was nasty!! …so was the room oops sorry chemo suite!!! I wonder if they forget how vulnerable we feel especially at our first appointment, to them it’s just work!
Good luck to you all especially Sue hope your appt with onc goes well tomorrow
Muv x
Good morning ladies and a special hello to Carole and Muv!
I totally agree with you Carole - this is a marvellous thread for sharing all our chemo experiences and the positive info sure does help as we travel into the unknown!
Special thanks to Louise for starting it 
So sorry Muv that ur app’t with ur onc and chemo people was so horrible. That’s 2 ladies in the last couple of days who have had bad experiences on their 1st onc visits.
Whats the matter with these people, they’re supposed to be professionals and part of their job is to calm and reassure us during this awful treatment…it’s not like we have a choice!
Well I’ve got mine today, so I shall post again later to tell you how I got on.
Big hugs to everyone and will speak later
Sue x
Good luck Susie xx
Morning ladies, just bookmarked this thread as it seems like it will be really useful to me over the next few months.
Had post op OPA last week after Bilat and right LNS, (Dec 08) only 1 out 4 nodes positive but would have rather it was none!
Due to see Onc consultant on 13th ( hope that’s not Friday!) and will get my “menu” then.
I was working as a nurse up until Sept and was in process of job hunting when all this kicked off, I find it really upsetting to hear some of you have had bad experiences with nurses as I feel it lets the whole profession down. I would guess you wouldn’t feel much like feeding back your experiences to the team now? But why not make a note of the problems you had and write after treatment? It may not influence your care now but could help improve things for others and help you to off load? Or if you have the energy, let them know. I always find specific comments about particular aspects most useful, for example, “please could you make a note to call me Gill rather than Gillian, (my full name is on my notes)”. Any half decent nurse should value comment and constructive feedback helps to improve practice. Likewise if you have a good experience, feed that back too. It makes a huge difference when someone tells you you have done something well!
And you have done this thread well! I’ve had a good smile at the pet antics, my lab collie cross has no off switch on his appetite and is a firm believer in the concept of food on the work top being a free lunch!
My 13 year old son has agreed to take him for daily walk after school as I don’t fancy being pulled about yet, it has ONLY cost me a pair of quicksilver trainers, luckily in a sale!
Also all the how to cope tips are great along with the reassurance that most are coping with life ok, good on you girls,
So hope it goes ok for you today Susie,
Is any one having treatment in Sussex?
all the best Gill
morning all, and a special morning to all the lovely ladies who have joined us!!
Having gone to bed at some incredibly early time i managed to sleep most of the night- though i did get up for the loo and still had that awful ‘swimmy’ head, made me feel like i was gonna fall over.
OH has dragged me out of bed this morning for breakfast (yuck) didn’t fancy any at all but needed to eat so i could take yet more meds.
cass141, i’m so sorry your visit to onc was an unhelpful one - i don’t understand why people feel they should be like that?? I had a similiar experience just before my op - i had to to a different hospital to have this injection for sentinal node biopsy. We waited for what seemed like an eternity, then a lady came through to us and said they hadn’t received any paperwork for me - and did i have it? It didn’t ring any bells to start with then i remembered that BC nurse had faxed to them but also given me copies to take, saying if i should forget them it wouldn’t be a problem-(don’t they realise how much we have to think about anyway) any way, she scuttled off when OH reminded her it really wasn’t our problem and shouldn’t they make sure notes were available prior to people arriving for appts?? Needless to say she found them!
Narnia, go for your long weekend - you need you time to remind yourself your still you even though this b… disease tries to make you think otherwise
Sue, big hug for today xxx keep in touch - were all here for eachother x
Carole,nice to have another lady to join us here
thanks cass141, don’t feel as bad as last night - just feel like i’ve been hit by several buses!!
Off to get my wig tomorrow, hope they look better than the first appt!
Sorry for the moaning today, may feel cheery later,
Love to all,
Louise xxx
Hi Narnia, been off the site for a while, as only just received new laptop - youngest totalled pc. I came away with injections after my lst chemo on Monday, but still having district nurses in to dress back wound and they did the jabs for me. Think of myself as quite a capable person, after managing changing all my drain bottles and stuff at home, but I wouldn’t have been able to do those jabs myself - bit scary, have to mix them with water, etc. Waiting for wig to arrive today, woolly hats and fake lashes at the ready. What it is to be a vain old bird?! Good luck. xx Jackie xx