I'll be starting chemo this month (6x FEC), but as I'm going back to my home country New Zealand for it (and the rads) I don't have a start date yet. I had an appointment with an oncologist on Monday this week and he was very positive and said I should recover fully from this, so that's made me feel more positive about things. My sister in NZ has been amazing and done lots of research into oncologists in Auckland and has already arranged my first appointment for November 8th at a well respected private practice that also works in the public system, so I will be well looked after when I get there.
I am booked to fly out on November 1st and have a lot to sort out before then like packing up my life and moving out of my flat. Luckily I have amazing friends here who are helping me but on top of all that I've just received appointment info for my liver and bone scans, which are on Friday, and I was needing that day for packing, so I'm just going to have to work around it. I'm now also starting to worry that they will find something in the scans, even though my nodes were clear and the surgeon got good margins from the WLE, so I'm trying not to panic about that (having a difficult day today though).
On the plus side, my work have been brilliant and I get very generous company sick leave followed by insurance covered sick leave, so I won't go broke as a result of deciding to go back to NZ for this bit. My manager and HR manager both support my decision and agree it's best for me to have the support of my family (and the benefit of a NZ summer!) so that's one less thing for me to stress about.
I just want to get next week over and done with and get to NZ so the treatment can start, it already feels like a lifetime ago that I was diagnosed and now I just want to get on with it and be with my family. I've been living in the UK for nine years and have very rarely felt homesick (I love living here and it's my home now) but I'm really feeling it now being so far away from my family.
Sunshine that's fantastic news, it's made my day knowing you don't have to go through it. I do hope you'll keep popping in and keep us posted on your progress.
Lizzy, hope you're feeling better and got sorted at the hosp 🙂 but please STOP googling or I'll have to pop round and sort your computer out so you can't 😉
Jackie, welcome and yes they will send you home from hospital with everything you need. They told me the most important thing is to take them even if you don't feel sick cos it's easier to prevent than to stop it once it's started. I'm more worried about my OH, he's like you and if I'm sick he will be so just in case I am I've bought a nappy bucket (so I can cover it up) and will have to get him to leave the room and turn the TV up so he can't hear me!!
Well had my pre-assessment and they didn't tell me much more than they already had. Went through all the *possible* SEs (again) and explained the process on the day of my chemo. I'll have blood tests on the day, then see the Dr and then they'll make up the chemo and I'll have it done. No option of the cold cap, they only have one and the staff haven't been trained yet to use it!! So it's a good job I'm not worried about losing my hair. I did want to get a wig sorted but you had to pay up front to get the prescription and I didn't have cash or cheque on me so will have to wait till I go back. I felt more like it was a money making exercise than helping me to feel better about myself during treatment and as they know it's going to happen it could have been sorted weeks ago. They say my veins are good enough for the treatment to not need a line putting in (or they don't want to!!). Don't need a flu jab unless Dr says get one(and he hasn't!?!) and I'd already been to the dentist, I was a very brave girl and went before MX. So I think that's me all ready to go!!
Gill, have you stopped singing yet 😉 We should have a song for the day to reflect our mood so todays tune is for Judes (welcome sorry you had to join us but glad to have you on-board) and is Lady in Red. You're humming already aren't you 😉
Right today I'm off for some retail therapy and a KFC (my weakness). I did make the nurse laugh when we were going through the 'can and can't eat', told her I'm not eating chocolate for the duration of my treatment cos I'm not risking going off it!! 😉
just want to say thankyou so much for your help and advice , i will ask if there is a possibility that maybe i could be given the emend for sickness , for the last 8 weeks ive been bombarded with that much information about what to expect and what might happen it frightens the life out of you , i had my mastectomy 3 weeks ago and still recovering , once again thanks guys for your advice , big hugs xxxx
Just seconding what Jane has said - I too had FEC-T chemo and wasn't sick once. I did have emend and there was one cycle where I felt very queasy for 24hrs. Not everyone is as lucky, but the aim is to keep you as side-effect free as possible
The fear is always worse than the reality!
Oh Jackie, you don't need to be so scared - honestly!!
You will come home from each chemo appointment with a large bag of various medications. At some units you'll have to go to the pharnacy to collect them (or better still, send a partner/friend) but at mine they were brought to me in the unit.
It varies a bit but you'll be given several different anti sickness meds, steroids to also help with sickness, something to make you "go" as the anti sickness meds tend to bung you up, possibly mouthwashes, anti fungals etc. etc. Before each chemo you'll be able to discuss your SEs with your medical staff and they'll adjust your meds accordingly for next time. Several times I had so many they gave them to me in a carrier bag!
Not many people are actually very sick these days as they've got the doses and meds so fine tuned but if you are you MUST phone your unit and let them know and they'll give you something else to take. Don't wait and suffer as it's really not necessary. There's one anti-sickness drug that's brilliant called Emend. It's very expensive so only given as a last resort but it really works. Push for it if you need it.
I had FEC-T chemo and although I felt queasier with each FEC I was never actually sick. If you have Tax most people doen't even feel slightly sick with that, although it does have other SEs.
The very best of luck and even more hugs than before,
hello everyone i am starting my chemotherapy in mid november and like most of the posts that ive read i to am terrified of the side affects , can anyone tell are you given anti sickness pills to take home with you or do you have to wait to see how you get on , you see i know this is prpbably going to sound stupid but i have a terrible sickness phobia that i have had since childhood , ive muddled through with this all my life but now ime so scared because i cant and dont know how to manage it , please can anyone offer any help , thankyou jackie xxx
thats fab news Sunshine, definately cause for celebration!!
and don't feel that you have got off lightly, you have been through a lot and deserve some good news
Well I thought I would be joining you all this month for chemo but after getting my results back today I have been given two pieces of good news. No more cancer cells were found in my lymph nodes (only one found in SNB) and as it was the tiniest cell and grade 1, I only need radiotherapy and tamoxifen. You can imagine the relief, although I had geared myself up for having chemotherapy and I don't feel quite so elated as I thought I would be. I also had my seroma drained which has made me a lot more comfortable. I just hope it doesn't refill.
I just can't quite belive it after lots of bad news.
I do hope all your treatments go well and your SE's are small. I know exactly how you are all feeling and I feel as though I have got off lightly.
I will keep looking in to see how you are all getting on.
Much love xx
lizzy - not organised really, the dentist was booked 6 months ago! i have now had the flu jab, i phoned to book appoint and they said come straight in, that another thing crossed off
hi judes, welcome, i hope you're recovering from your op, i had mx and axillary clearance 3 weeks ago and am doing ok, i've been driving this week, just a few short trips, to and from school. the whole breast area and under arm is still feeling numb and tingly, but all normal, i love the colour of you hair, i have got a hair dye and am planning to do next week
and thanks Alto for the tips, i am planning on cutting my hair too, i've been quite short before so it won't be any shock for me, i don't think there would be enough to make a wig from my hair, but i'll take a look at that link
i've had a wander around the shops today, checking out alopecia shampoos, apparanlty recommened if you try the cold cap, aloe vera supplements and hats!!
didn't buy anything, that would be like admitting this was really happening!! (which i know it is)
I'm another one who's butting in as I had my op last Christmas Eve, chemo (FEC-T) from January to May this year, then rads through June. I'm now just on Tamoxifen and back at work.
I just wanted to comment a bit on the hair issue. My hair was waist length, dark and very curly and had been long for 27 years - my husband had never seen me with short hair.
I had it cut very short a few days before my first chemo then clippered it when it started to fall out. I'd strongly recommend this because when your follicles start to go your scalp gets sore and it's worse if you have longer hair pulling on the skin and moving around. Also if you use the cold cap it's better if your hair is short so there's less weight in it (and it looks a bit better when it's unwashed!)
When the hair comes out it often comes out in huge handfuls and you need to think how you're going to deal with that and the constant blocked plugholes if it's long!
If you do have it cut short, have a look at http://www.littleprincesses.org.uk - a charity who make wigs for children who've lost their hair, and see if yours is long enough to donate. A couple of us did this and it's feels like a bit of an "up yours" to the cancer!
I lost every single bit of my body hair, but not everybody does and it's all back now - I had my first haircut since January just last week.
It might sound peculiar (but I know I'm not the only one who feels this way), but when I finally shaved off the remaining tufts I actually felt quite liberated - I certainly looked better for it as the tufts looked awful. I never wore a wig - I went commando most of the time and wore a scarf or hat if it was cold. After having all that hair to faff with for so long, I (almost) enjoyed the experience of not having any and intend to keep it very short now.
Good luck and massive hugs to you all,
hi there all
can i join, i'll be starting chemo in about 3 weeks, onc said yesterday. still waiting for dates. having 4 X FEC (three weekly) then 12 X TAX (weekly at lower doses), so a bit daunting but good that we can be in it together.
am recovering from Mx and ANC, out of hospital yesterday and i can feel the seroma but its not too bad yet.
had my hair cut and died bright red last week as a last hurrah.
good to meet you all, i imagine we will get to know each other rather well.
love love xx
Gill, sorry to hear you had a bad night's sleep. I Had a bad night's sleep due to abdominal pain following fertility treatmentand am now waiting to go to the hospital about that. I've got an 'emergency' appointment this afternoon.
Gill, you sound very organised. Yes I'm having a heart scan because I will be having Herceptin. Dentist is done and I'm having the flu jab on Monday.
Sunshine, sounds like you have been through the mill...sending you big hugs.
It's pants having to cancel your holdays. We were meant to be going to Australia on 5 November to see family but have had to cancel that.
Fingers crossed all will go well at the hospital this pm as I know this sounds weird but I don't want to delay the chemo for any longer and I've been Googling and think I have got ovarian hyperstimulation syndrome which can take a week to get over...I'm probably over reacting..damn Google!
Morning L4W, guess what song i now have on my head!! thanks for that! 🙂
i don't have a pre assessment booked, but i do have to have bloods taken 2 days before chemo, also have to have a heart scan, apparantly herceptin can affect the heart, so they keep an eye on it, also advised to get flu jab. and i've got check up in dentist booked for next week, thank goodness i'm off sick, so much to do, and i need to buy ginger biscuits!! lol
as for the blue folder, i spent 10 mins this morning looking for a red one??? i was convinced it was a red one they'd given me
i had a rubbish night sleep last night as my 6 year old decided to join me in the middle of the night and kept pulling quilt of my shoulders so i was freezing! a bit of bribery required for the next week, no trick or treating unless you stay in your own bed...
speak later, no doubt, have a good day whatever you do
Josie1 - welcome 🙂 I hope everything went ok today and you got your start date, isn't waiting just the pitts 😞
OMG weme that's just what you needed.... NOT. Hope you're feeling better now.
Well don't know what's been going on today but I've only just managed to login. I was able to read posts but not reply!?! From what I could glean from the error files it was something to do with account authentification but it was working fine first thing this morning then I clicked on a link and it locked me out!!
Gill, perhaps we should all be prescribed a blue folder, nothing like a bit of bedtime reading to help you sleep 😉
Sunshine, sounds like we've all had a terrible time of it lately, hopefully we've all reached the bottom and now the only way is up (oh no I just started singing (Yazz))!! Ask your onc about the holiday before you cancel, I only had to cancel mine cos it was 3 weeks touring round both islands and they thought it might be too strenuous. If it had been a relaxing holiday they wouldn't have minded me going and could have worked my treatment round it, so it's worth telling them before you cancel. Good luck for tomorrow, will be thinking of you and sending positive thoughts. I've got my pre-assessment tomorrow!?! Not sure what it will entail but don't think they'll tell me anything they haven't already, just perhaps more detail and I'll get a look round the oncology unit (state of the art, so I'm told).
Hi there everyone
I've just got back form CT scan, unfortuately I have just discovered I am allergic to the dye they give you and have spent 3 hours in A&E being treated for that, but they let me out eventually. Hopefully I wont have a similar reaction to the chemo
this is a good place to have a moan, Sunshine, nobody seems to mind. i think once you get it all out you start to feel a bit better, a bit like having a scream, thats supposed to be good for you too.
i have come back from my appointment with Onc, she was lovely, it was horrible walking into the cancer centre though, i wanted to get back in the car and come straight back home
i'm starting chemo on 3rd Nov, so day after you Lizzy
i'm going to be having taxotere / carboplatin /herceptin, whatever that all means, i've been given a blue folder with loads of bedtime reading! and some steroids to take day before i start chemo
Josie1 - let us know how you get on, and when you're starting
It has also been a terrible year for me, probably my worst. I lost my mother in June to cancer, she was 84 so a good age but I had only just started to come to terms with that and 6 weeks after her death I was told I had breast cancer. Then only a couple of weeks ago my daughter who is on clomid for fertitlity treatment told me she was pregnant, at last I thought, good news only for her to miscarry a few days later. We have also had to cancel one holiday due to my mother only having weeks to live. Booked another for next month before I new about BC but now we will probably have to cancel that.
I feel like running away somewhere, where nobody can find me.
Sorry for my moan but axillary clearance has left me really down with a nasty seroma and also getting anxious about results tomorrow.
Thank you for listening
Big hugs x
Hi not sure when will start chemo but have my appt with oncologist today so am guessing it will be soon , so would like to join you lovely ladys , also have results of bone scan and c.t scan so am very scared . My Dr said I will have chemo, radiotherapy,tablets for 5years , already had double mx with full node clearence so not realy sure what to expect today xxjosie (bev)
werne, i just wanted to wish you luck with your results for bone and ct scan, i've just had results of bone scan and thank god they were clear. i'm still waiting for a date for the ct scan.
its just an additional worry that we could do without
werne, i'm so sorry to read about your OH too, and L4W, your parent in law, so many people seem to have had a stressful year just before BC, my OH half was run over this time last year, the car actually went over his leg, and at one point we thought he may loose it! Luckily he didn't & he returned to work in june after about 7 months off, so we felt life was getting back on track too. now this, his turn to look after me! 🙂
L4W - at least NZ will be something to look forward to at the end of this, that is what i'm goint to try and focus on. i just want 2012 out of the way and bring on 2013!
i am also thinking short hair cut, maybe even tomorrow, althought i do want to try the cold cap
best wishes and SE, what SE's!! (well i can hope)
Saw your other post too Lizzie that really is great news.
Weme, so sorry for your loss. We (OH & I) are having our 'annus horribilis' we lost both his parents in Jan 11, dad had lung cancer but mum was fit as a fiddle. She died first and within 12 hours dad had gone too, so beautiful and devastating all at the same time, they'd been married 53+ years and I guess just couldn't bear to be apart. Then we were just starting to get life back on track and booked our 'holiday of a lifetime' to new Zealand (we've been planning it for years but his dad being poorly had made us wait) and then bam, I've got BC and it's postponed for another year. If all goes to plan my last chemo will be 9th Feb, the day I should have returned from NZ.
Gill13, I'm with you and don't think I'll ever get bored of being ordinary.
Hi one and all
I thought about getting my hair cut but as someone who only gets it done about once a year and puts up with it the rest of the time it is obviously something I don't keep up as a regular basis and I thought why have it cut when in a few weeks time it will all be gone anyway!
I must try and find out what treatment I'm getting, just spent 4 hours at hospital getting a bone scan, got a CT scan to look forward to tomorrow - what joy!
Ordinary life sounds good to me, was getting used to it after seeing my husband through cancer about 18 months ago (unfortunately he didn't win the battle and I lost him Jan 2010).
Life just likes to try us sometimes, I will be happier when it's all over.
Here's to little SE's!
Hi ladies, I having been following the October chemo gang but due to fertility treatment I am not starting my chemo until 2 November (my 34 birthday of all days) so i am an 'inbetweener'. I'm having 3 x FEC and 3 x TAX followed by herceptin for 12 months. I'm getting my hair cut short this weekend. I've not had it short since I was in primary school!
i think thats all i want too, a return to ordinary life. no fuss, no drama, just ordinary...
i know you're meant to re-discover life or make life changing desicions after cancer but at this moment ordinary would do, maybe life changing will come later when we're bored with ordinary again 🙂 x
staycalmandcarryon, thank you your post really helped it is the not knowing that I find hardest to cope with. Will I be ill, wont I!! I know I wont know till it happens but it's nice to know it''s not all doom and gloom 🙂
Weme, perhaps that's what we should call ourselves - The Inbetweeners. I'm like weme and actually starting on the 27th Oct, I've been following the Oct thread and got lots of useful tips and they seem like a really nice bunch but just felt they were ahead of me.
Sunshine1 & Gill13 feel free to pop in and out we all know this 'club' has no exclusivity 😞 Just nice to know there's someone out their to hold my hand and hopefully we can guide each other back to an ordinary life. Oh I can't wait to be ordinary again (I can't say normal cos I never was/am/will be) 😉
Best wishes to us all and may all our SE be little ones.
i have joined the gang for starting chemo in oct, but i haven't yet started, i have my appointment with oncologist tomorrow, so i am guessing it will be next week, but it could be beginning of nov
there's been some really useful bits of posted on the october discussion
if you don't mind i'd like to keep in touch on this discussion too?
Just thought I'd pop in to share my experience and hopefully reassure you.
I started chemo in Jan and finished April. I had 6 FEC (allergy to tax). I can honestly say that, although not the nicest experience Ive ever had and couldn't wait for it to pass - it wasn't as terrifyingly dreadful as I was expecting.
I managed weekends away, meals out, seeing friends + most of the run of the mill stuff. I had one day when I was really sick but got some stronger anti-sickness pills straight away, which stopped it. I had my first haircut last week after shaving it off in Feb. I had ops and am now on the last of my rads.
It's grim, but it'll pass.
Drink loads before, during and after treatment. Rest when you need to as you can't rebuild your energy and plan lots of nice things to do on the days you know you're going to be feeling better (week 3 usually).
I am getting my first chemo session on 28th Oct, I have been nosing around the starting chemo in October thread, but I feel I am in between the this one and that one! I'm not sure what type of chemo I'm getting, but I know I am having 6 sessions. I have a bone scan today and a CT scan on Tomorrow as my bc (inflamatory bc) is agressive/invasive T4 stage and they need to check to see if it has spread. After chemo I am having a full mx then radio therapy. I just want to get on with the treatment especially knowing it can be invasive, the sooner it starts the sooner it will be over with. At the moment it doesn't seem real but I do seem to have problems with sleeping all night, I guess that will only get worse once the treatment starts.
Wishing everyone luck with their first treatment.
I possibly might be joing you. Not completely sure yet. Have got to go on Friday to get results of axillary clearance but as it has gone to lymph nodes it is looking very likely. I suppose I will then have to wait for an appointment with onc. We have a holiday booked for the middle of November but as I have been left with a terrible seroma after op we might postpone it until next year when treatment has finished. To be honest I just want to get going, the sooner started the sooner finished.
When do you actually start your chemo?
Any of you ladies out there starting chemo in Nov that would like to share this journey with me.
I'm having 3 x FEC + 3 x Tax and Herceptin followed by 3/4 weeks of Rads and 5 years of Tamoxifen.
Got my pre-assessment on Fri and getting a bit jittery cos I don't know what to expect 😞