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
Hello all,
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 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,
Jane xxx
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)
Gill x
Hi all,
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
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
Gill x
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
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,
Jane xxx
Hi Jackie
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!
Good luck
Dx
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
Morning All
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!!
t.t.f.n.
L4W
Hi everyone,
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.
afternoon everyone
hi Tracey, i can understand wanting to be with your family at this time, and definately make the most of NZ summer, but what a stressful time for you, try not too worry too much about results of scans, if no nodes were involved, its not very likely to have spread elsewhere for you, good luck with your packing too, its amazing how much “stuff” you collect?
L4W - I did sing Lady in Red as i read it! i like the idea of a song a day
and i’d like to thank D and Alto again for the advice
Jackie, i’m also worried about the SE, but trying not to think too much about them, we could be lucky and not suffer too much, well we can hope
we’ve had a nice day today, went for a drive to Betws y Coed, had chips by the river, the sun was out, not very warm though and now the OH is making me dinner
hope everyone else having a good weekend
Gill x
hiya all i just want to say what a lovely bunch of wonderfull people we are , this thread has helped me no end to realise that were all in this together and that were gona be here for each other, i hope i can offer the same help and guidence that has been shown to me , thankyou all so much , lets keep each other posted on our journey , thanks guys big hugs xxxxxx
Morning Ladies
Todays tune is for Tracey… awww you guessed it didn’t you Leaving on a Jet Plane
Tracey - I hope all goes well with the packing and the journey home, under any other circumstances I’d be jealous that you’re going Try not to worry about the scan results, they are probably just being thorough and it will save having them done when you get back to NZ. I hope you’ll keep in touch once your back with your family and I’d like daily reports on the weather and what I’m missing it will give me something to focus on for 2013.
Well I don’t believe it I’ve woken up this morning with what appears to be the onset of a cold!!! Throat hurts when I swallow, head is banging and nose goes from blocked to running like a tap!! I’ve got myself dosed up and will ring the helpline later for advice cos I don’t want this to delay the start of my chemo 
Had a great day yesterday and treated myself to some more bits and bobs (scarves, hats etc.) also went to Aldi and got some drinks (they do some nice fizzy ones) and Manuka Honey for those that like it (good anti-bacterial properties) then had 2 fillet burgers ummm yummy. Came home and played in the garden till the light failed and then nodded off in front of the tv, all in all a good day.
Out for lunch today with family and then hoping to get a few more hours in the garden while the weathers nice.
Have a good one
L4W
we’re all a bit quiet on here at the moments, is it because we’re a little bit in limbo? just waiting for the next stage
L4W hope you are feeling better tonight, i can underdtand that you don’t want chemo delayed
i’ve been hat shopping today too, i’m not usually a hat person, and hoping not to loose hair with cold cap, but don’t want to be caught out! Debenhams have got a couple that i like, roll on pay day!!
i’ve bought some ginger biccies and got some pineapple juice in, well its a start
whats tomorrows song going to be?
Gill x
Hey gals
Firstly im so sorry to see so many of you on this journey. Hugsxxx
Im 12 months on from you, i started my 6xfec nov 2010.
It seemed at times it would never pass but i cant beilve that the year has passed. It is at times hard and you have to dig deap, but there is someone on here that can answer questions and i gaurantee that if u feel a certain way someone on here will also feel it too.
Stay strong, beilive and always here if anyne needs a chat. .
Xxxxxxxxx
hey folks
hope you’ve all had a good weekend. thanks for coming here poppy, i love it when the ‘old girls’ join in to remind us there is life after BC.
good luck for everyone starting chemo tomorrow, i hope you’re fit and ready LFW, can also understand you don’t want to delay it now.
the song? hmm. i’m still standing?
there’s a joanna newsome song called bad day that starts:
“hey hey hey, the end is near, on a good day you can see the end from here”
youtube.com/watch?v=z-bxO2HLKR8
am loving that at the moment but might be a bit premature.
there’s a India Arie song called I am not my Hair …
youtube.com/watch?v=E_5jIt0f5Z4&ob=av3e
i kept singing, , , im still standing all through it xxxxx
Judes - i’m liking the song title “hey hey hey, the end is near, on a good day you can see the end from here”
Poppy - its good to hear from someone 12 months on, i hope you are feeling well?
Gill x
Hi All
Well guess what the hospital said… ‘Keep taking the tablets, wait and see how you feel and we’ll decide on the day’ So it’s back to the waiting room for me till Thurs. I’m so fed up I never get colds and I had so much planned for this week, all I’ve done today is curl up on the sofa!! Good practice I suppose but not what I had planned
To cheer me up tomorrows song is: It’s a Beautiful Day
Because it’s going to be
Night
L4W