Hi Paf, sorry you've had to join us but welcome to the Nov club.
Daysie, hope your feeling better now and if your cooking a turkey dinner count me in. Can we have parsnips roasted in honey & mustard and carrots cooked in Vodka & orange, plz pretty plz 🙂
Jean, before you take any supplements or herbal remedies it's best to speak to your onc. I prefer the more natural medicines but in our case and depending on your dx they can have an adverse effect on the chemo.
Gill, if the Rose doesn't work speak to your doctor. The hospital asked me how I was sleeping and offered me pills if it was a problem. Can your employer do that, I didn't think it was legal for them to visit you at home and as long as you have an 'unfit for work' cert they have no right to. I use Aloe Vera gel, moisturiser and soap as I have sensitive skin and have found the gel has really helped with my scar. It's very good at rehydrating the skin. I have heard of it being taken as a tonic but never tried it.
Well I got a little bit of gardening done and felt better for getting out in the fresh air for a bit. I was only pushing bulbs into holes so it wasn't too strenuous and I did most of it sitting down 🙂 Still not feeling too bad a bit sick now and again but the tablets are keeping on top of it. Have felt a little tired today and spent most of the afternoon on the sofa.
Hope everyone else is doing ok, take it easy 🙂
welcome to the thread, i've just popped back on during x factor adverts so thought i'd say hello to you.
we'll be starting chemo together, Nov 3rd, a date for our diaries
your mx was an age ago, my mx sept 29th , i'm still feeling sore, numb, getting twinges, how are things a month on?
Hiya! I've come to join you all if thats ok- I start my 6xFEC on Thurs, having had a mastectomy way back in early September which all seems an age ago. Had to decide on chemo or not since I was intermediate risk and became a crazy amateur oncologist! for a couple of weeks on the internet- DEFINITELY not recommended- I just wanted the oncologists to hold my hand and tell me what to do.
In the end strongly guided to go for it, so eventually here we are!
I am scared and fed up of being in limbo but not wanting it to start.... thank God for these threads to have a virtual hand, or many, to hold through it all.
lol - You go daysie!! speak it sis!!!!
Nice rant Daysie, i love a good rant! get it all out.
i think you hit nail on the head about being mentally fatigued, thats exactly how i feel, last night i woke up 3 times! arghh!! i would like to add another stuff to your list, stuff the healthy eating, what good has it done us so far? bring out the chocolate
roll on sat night tv, vino and chocolate!!
thanks Lulu - i think my veins are ok, well not had any trouble so far
jean - i've been wondering about supplements too, i was recommend to try Aloe Vera, apparantly good for the immune system? has anyone else heard of this?
i like the idea of hibernating this winter too, just feed myself up and tuck myself away, wake me in spring 🙂
Hope everybody is ok and managing to enjoy a lovely autumn day, hard to believe Christmas is so close, I can't get merry at all :o(
I am still waiting to see my consultant- Thursday morning will be results of tests day and treatment plan. I noticed on my discharge letter from when I had the SLNB he had written 'Invasive Ductal Carcinoma' which I stupidly googled, despite everybody saying not to :o( i picked up on the words that it is the most common type which is supposed to be some consolation, then then shock horror, the type that is most likely to spread :o(
I'm losing the energy to worry any more, feeling tired, but think that's due to being mentally fatigued, I keep waking up at 5.00am and get up and read the forums for far too long lol.
I still haven't had the results of my bone scan, torso scan, sentinal lympy node biopsy and know very little more other than I should be starting chemo first (a couple of weeks time). In the meantime my boob is still aching and feels bigger than it did :o(
I am soooo fed up with this bloody cling-on alient thing inside my boob that seems to be feeding on my good tissue grrrrr. I wanna get on with chemo and blast the mother fcuker out grrrrr. Not upset anymore just fcuking angry with it for picking on me.
I am going to carry on with everything as normal - sod it if I'm tired I'm not letting this Kretin get the better of me!!! lol hysterically!
Stuff work...stuff the bills...stuff my hairdressing appointments...stuff the turkey...lol.
Rant over! lol
Now I'm going to Eat, Drink and Be Merry!
Going to have some Wine and a Pizza and enjoy a good nights TV, Strictly should be great (halloween special) and X Factor lol, and a film later about Ghosts of Girlfriends Past lol.
Jean - our hospital dietician visited the Big C centre last week and said we have to forget taking vitamin supplements because we should be all our nutrients from a well balanced diet, for example, she said it is far better to eat a whole orange and let our body break it down naturally and to take a vitamin C tablet. She said we should not need any supplements. She said it keeps our organs more health to work as they are supposed to, by breaking down whole food, steaming vegetables is the best way, or eating raw veg, fruit and salad and lots of it. She gave us loads of handouts.
Have a good weekend everybody and keep your chins up!
Your own lol xxx
another question normally during the winter I take a Vit C and Zinc supplement does anyone take any similar supplements while on FEC-T
Jean.......I'll ask my Onc if you ask yours first!! loool
I like the sound of GA for 9 months, or maybe an induced sleep like in intensive care until it is all finished.
gill a hickman line is a central line inserted through the chest into main artery and the right side of your heart. they only usually do it if you have poor veins but some places seem to do it as standard... my unit are very reluctant to do it unless there is no access to veins as it has a higher risk of serious infection being directly into the heart and also an associated risk of clots again not so good in the heart...
my practice nurses were wanting me to get one as my veins are so rubbish it took 5 attempts and a me fainting to get pre chemo bloods although chemo nurse cannulated me first time she recommended i was assessed by the specialist nurse who deals with picc and hickman (picc = peripherally inserted central catheter and also goes to the heart but is inserted in the arm and up through the veins of the upper arm and chest). specialist nurse said my veins are too poor in my arms even for picc but ok for hickman so just waiting on an appointment and for her to run it by my onc.
Libra lady - i'd definately ring and ask to have before chemo, i was given date for ct scan for the day after, and they changed it for me, you don't know how you'll feel the next day and last thing i wanted was the pressure of having to go out
i may be being dim here but what is a hickman line?
i am dreading next week, monday - dentist 😞 Tuesday - CT scan and bloods, wednesday - visit from employer, been off 28 days (a formality i'm told) and thurs "C" day, i'm not sleeping too well at the moment either, i woke up about 3 times last night, maybe a few glasses of Rose tonight, might do the trick 🙂
haope everyone doing ok
Thanks for that ladies
Alto I appreciate your explanation - kind of seems thats what I may be looking at and I will take your advise re: sedative
Im not a whimp having 3 C-sections, an abdominoplasty, gallbladder and kidney stones in my past so my pain threshold is quite good but I hear most people prefer a sedative for this procedure. Plus this whole thing has certainly turned me into a blubbering mess!
L4W - I was actually thinking that also - will call them on monday and see whats cooking.
*wonders if they could offer a GA for the next 9 months* - I can just wake up when its all over!
Libralady, why don't you give them a ring and ask if they can change it to a day or so before, if you explain why I'm sure they'll do there best.
Weme, hope you're feeling better 🙂 Take it easy, I'm worried I might be trying to do too much but if I just sit here I'll go stir crazy so thought a bit of fresh air and some gentle gardening might just stop me tackling bigger jobs. I'm only planting a few bulbs so no heavy digging and I thought it would give me something to look forward to, as the crocus flower my chemo should be coming to an end 🙂
Take care all
It's all a bit bewildering at first isn't it, so here's the benefit of my experience...
Libralady, I had my echocardiogram just after my first chemo as well. I wasn't feeling brilliant but really it was OK and they were very gentle with me as they understood that I wasn't exactly well!
I had an admission letter for my Hickman as well. It's not the same everywhere but at Bedford hospital they admit you to the day ward and the insertion is done in an operating theatre (sterile conditions) and you're fully monitored throughout. They don't usually give a GA for a Hickman. My surgeon told me that he only used local anaesthetic and would give a sedative if I needed it. All I'll say about that is that if you're offered a sedative from the beginning, take it!
I was actually in all day as I didn't go down to theatre until mid afternoon even though I was nil by mouth from the morning and had to be there at 10am. Take slippers, a dressing gown and a good book or Kindle!
There are two types of jabs. Neulasta is pegfilgrastim and stays in the body so is a one-off jab, but it's hideously expensive (over £700) and not everywhere will prescribe it. The other ones are filgrastim and are a lot cheaper but leave the body quickly so need doing daily. Anything up to ten days seems to be normal. Some places seem to give them to every one and some just to those who get very low white cell counts or are prone to infection. I had Neulasta after I had a cellulitis infection after FEC1 as I was very ill with it, and was prescribed it as standard after that. The district nurse came to do mine but I know in some places you do it yourself.
I was always given antibiotics and antifungals to take in the middle week - it's standard at Bedford hospital although it doesn't seem to be everywhere. It meant that I only had one infection (which I think I'd started before I started to take the anti bees anyway) and I never had thrush which seems to affect a lot of people.
Hope that helps to answer some of the questions!
I have to give myself a neulasta injection 24 hours after the end of Chemo to make more White cells to help reduce the risk if infection. Why not give them a call and ask whether the injections are for this too although Iv never heard of 7 days of them some are a one off like mine which stays in your body for a few days or you can get daily ones for 3 or 5 days. Your district or practice nurse can give them I just did it myself cos I'm used to giving injections.
As for the antibiotics I used to get them to start on day 7 to 14 if my neutrophils were under 1.5 but over 1.
Some people don't want to know everything but you are entitled to ask why when how and what for with regards any of your treatments and if you can't remember write it down or phone them to ask again.
Take care and hope you feel better soon xxx
Had a bit of a rough night, felt a bit nauseous and kept waking up, might be my own fault as it was my Mum's 75 birthday yesterday and we had a family get together after my chemo, may have ate a bit more than I should have, but it wasn't as much as I would have in normal circumstances!
The chemo was 2.5 hours late to start but only took 2 hours instead of 3 like they said it would. Feeling absolutely exhausted today and still a bit sicky. Found out yesterday that I've got to have injections in my stomach starting tomorrow for 7 days, what did I do to deserve that? And they've given me antibiotics to start taking next week, what do they know that I don't? has anyone else had that?
L4W how can you find the energy to do gardening? Although I did feel much better after the chemo than I thought I would, I think maybe I should have given the party a miss yesterday! (it was just close family).
If I remember correctly from my NHS days a Hickman is put in under GA but only a light one and you are out before you know it and the echocardiogram is really only precautionary, I am sure you don't think you have any abnormalities or problems with your heart, apart from it feeling like it will break some days with the weight of it all.
So remain positive and they do say that the first couple aren't the worst ones and the effect is accumulative towards the next two and again to the next two, so I am sure you will be fine.
Big cyber hug for you ((((HUG))))
morning lovely ladies xxx
I had my echocaridogram appointment come through and its a day after my first chemo
Im just a bit concerned as I thought it would be before -plus how do I know I will be OK 24 hours after chemo??
I cant imagine having to sit in a full waiting room if I feel ill (heres me assuming I might be unwell)
Then.... I get an admission letter for my Hickman line?? I thought it was a case of going in and getting it done under sterile conditions and out again - this letter tells me to starve from midnight etc etc
More things for me to worry about eh! lol
so pleased you are doing well L4W.
Had a fairly good night last night until I woke at 4am cos I needed the loo!! (Note: don't drink too much late in the evening it might disturb your sleep :-)) Managed to get a few more hours on and off and still feeling generally ok.
OH wont be back till this aft so going to have a nice easy morning just pottering, it's looking like another nice day so I might get out in the garden for a bit and sort my winter bedding plants and bulbs for the spring.
Be nice to yourself and have a good day.
hi there hospice13 sorry to jump in but i wanted to say that i to am in the waiting room , diagnosed BC aug 23 , dnt have my mastectomy until sept 28 , still waiting to start my chemo sometime in nov , all this waiting makes it all so much harder to cope with so i know how you feel , i know what you mean about the tightness and and pain after your MX ime still suffering with those symptoms especially worse at night , i hope things ease soon for you, please let me know how you get on if thats ok , BIG HUG xx
Sorry its late but hope you enjoyed your birthday celebrations Lizzie.
Good luck for a good night L4W.
Am still doing ok although I am forcing myself to take it easy as I'm starting to feel a little weary so I've been doing a bit and then having a rest. I was just about to nod off this afternoon and then the phone rang (make mental note, if going for a nap switch the phone to silent!) by the time I'd finished I was wide awake again. The anti-sickness tablets seem to be doing there job, I've had a couple of times when I've felt a bit gooey but a cold drink and sit down seems to send it off and I'm eating little but often. No nasty taste and mouth seems to be ok so far. Think it's the steroids keeping me awake so I took them a bit earlier tonight with the hope of sleeping through. OH is away tonight so I can have the bed to myself and toss and turn to my hearts content 🙂
Sweet dreams and good luck to all those starting next week and Happy Birthday Lizzy hope you have a lovely weekend you can be like the Queen and have two birthdays this year 🙂
Well done for getting number one done xxxxxx
lol Shelle - you probably chose your name based on how you felt at that time - My username would have been full of expletives!!
we all have those dark moments i guess - Ive had so many of them - im trying to flip the script to positive thoughts at the moment and admittedly im having more positive than negative thoughts now my treatment plan is about to kick in and i know whats ahead of me.
shelle, glad to hear you've had a better day, there are so many ups and downs, but when you down its hard to remember the ups
L4W, glad you still feeling ok, but try not to over do things, i've just been reading some other posts where ladies have been hit by fatigue when they had been doing well
Lulu, sorry that your 1st chemo was so crap, but glad you are now feeling better
hope everyone else feeling ok, and we all have a good weekend 🙂
Shelle, I've found it here http://share.breastcancercare.org.uk/forum/setting-up-or-editing-your-profile-t21555.html
"Note that you can't change your username. If you want to change it, send an email to "
I know of at least one regular poster who changed her username so I'm sure it won't be a problem! 🙂
Lulu, sorry to hear you had a bad time. Hope you'r feeling ok now.
Hope all the other ladies who were starting today got on ok.
I had my tour of the chemo suite today and general pre-assessment. Apparently I've got a temperature and I haven't even started yet!! It better go down by next week in time for C day. I blame it on the flu jab I had on Monday!
I've booked in to see the wig man at the hospital and am felling ready. I am going to enjoy this weekend. I'm celebrating my birthday early as my birthday is on Weds which is my first chemo day!
Lulu - Sorry to hear you had a rough time but glad you're feeling better now.
Shelle - Glad your feeling better today, the tough days are really tough to get through but that's what we are all here for, hand holding is our speciality 🙂 I've already told all potential visitors that they have to phone before they come and not to be offended if I tell them to 'sod off' or ask them to leave when I've had enough.
Jean - My hairs already short, slightly longer than a No.8 on top but a No.2 up the back and I've decided to leave it for now. I've booked my wig appointment for next Tuesday, so I may shave it all off then.
Ooooh got to have my tablet 🙂
I think if you pm one of the moderation team they may be able to change your name to something you prefer. XxX
I wrote a huge post and it's disappeared 😞
Anyway the crux was Chemo day was crap. Had an allergic reaction and was there for 7 hours. Feeling great now though!
Hope Weme got on ok today
L4W glad you had a good experience yesterday
Hospice 13 hope your feeling a bit more reassured by your BCN. Why not do some fun things during the next couple of weeks that you prob won't feeling doing during Chemo. I went a wee impromptu holiday with my bf and did shopping and dinner with the girls.
Will maybe rewrite the full story later when I can be bothered lol
Hope you are all coping ok
Love and hugs
Oops me again(cant get used to laptop without a mouse attached!) Called and saw an old friend on way home and almost feel myself, sel--pity session over with for now. Have a flu jab booked for later today. I have realised also that I am probably having too many visitors and am unintentionally putting pressure upon myself. Having just moved doesnt help as everyone is keen to see new abode.Dicussed with BN re long wait and apparently there is nothing they can do about it. So in the "waiting room" I stay!
Thanks again for messages of support xxxxxxxx
P.s my name is Michelle (known as Shelle) dont know why I chose Hospice name as I cringe everytime I see it! Not sure how to edit and change it.
Morning ladies! Today has been better, thankyou soooo much for all the lovely comments. Had hospital appt for a fitting but they didnt have time today so they ordered me some bras to try instead. She thinks I need a bigger bra which may help with the discomfort I
Thank you Theresa that is really helpful.
Hijacking your November forum again! Soz.
Jean - I've just shaved mine off, 2 or 3 days after the scalp started getting sore. The soreness started on day 12, and then the hair started coming out on day 14. Hope that helps you make a decision.
Thank you for watching over me last night that must be why I slept better than I have in awhile xxx
Good bit of advice about the gloves L4W will remember that one and glad things still going ok for you except the sleep of course.
One thing that I am thinking about is when to get the clippers out, my BCN recommended doing it just before I have chemo because of the hair follicles becoming painful, what is everyone's take on this?
Have a good day everyone
Good luck for today Weme, bit of advice nurse gave me was to wear gloves to hospital and keep them on. It helps to plump up the veins in your hand so makes getting the cannula in easier 🙂
Lulu, hope all went well for you yesterday and all your SEs are little ones 🙂
Well I'm still feeling ok, bit light headed (sort of a foggy feeling) but not too sick at the moment. Had an ok night although I didn't sleep right through and was awake with the birds, guess that's just the steroids chasing the sleep fairy away so will have to find out who's on patrol in the dark dark wood tonight 🙂
Tracy hope alls going well with the packing and good luck for your scans today. Safe journey home for Tuesday and best wishes for your treatment, hope you'll be able to keep in touch and let us know how you're getting on 🙂
Hospice, could you ask to see a different onc, most hospitals have a team. My consultant was on holiday when I was dx but I saw his understudy and she got the ball rolling. It did mean I had to go back to see him just before my surgery. They do have timescales for your treatment and I know they are only guidelines but 10 weeks is a bit much to expect you to wait. It may not be detrimental to your treatment but doesn't help with your state of mind. Do you have PALS service at your hospital, perhaps you could speak to them. Try to stay cheerful and do try to get out (((hug)))
Hope everyone else is feeling good today 🙂
Grannie22 I am watching you tonight from the nest in the yew tree ( in the dark dark wood. I am patrolling tonight because of the steroid tabs chasing away the sleep fariesn. Best of luck with your future treatment you know we will be there if you need us, just shout. My second to last Tax is tomorrow then DXT.after Christmas.
Best wishes for all in waiting rooms. So boring old mags and buggy coughs next to you just when neuts are low. Unhealthy places hospitals!!!
Hugs to all especially old friends grannie
Goodnight weme and good luck for tomorrow big cyber hug ((((HUG))))
Night Night all, thanks for all the well wishes, see you on the other side of TAC no 1.
Well that's the baking done and I still feel ok. I've taken my anti-sickness tablet and I've been drinking loads (and yes my wee was red!!) of sparkling water (lemon and lime, very refreshing). I know it's going to hit me soon so I'm going to have an early night and try to get some rest.
Hospice, sorry you had a bad day 'the waiting room' is the worst place to be but it seems to be where we spend the most time. If you're feeling up to it try to get out and visit friends, that way when you've had enough you can leave and has the added bonus of a change of scenery. I find I go stir crazy when I'm stuck at home.
Weme good luck for tomorrow, don't forget your sweeties and try to drink plenty. Hope all goes well for you (((hug)))
Todays song is Anastacia - You'll Never Be Alone (I didn't know she'd had BC back in 2003, she went for a breast reduction and they found she had BC)
L4W - so pleased that your 1st session was not too bad, and really glad that you let us know, lets hope it continues that way
hospice - hope tomorrow brings a better day for you, i have times like that too, usually when i'm alone, so i find its better for me to have company, but this doesn't usually include visitors who i feel i have to make chit chat with
Hi to Jaxette, and i think the heart scan is just like the scan you would have had at your initial appoint at breast clinic, i had ECG before surgery and was told it was a different test, and as the other ladies said CT scan is only done when more than certain number of lymph nodes affected
good luck to Werne for tomorrow, hope all goes smoothly
I still have those days, and i'm months after chemo.
Sorry you are having a bad day hospice13 a big comfy cyber hug for you:
I know what you mean about putting on the smiley face some days it is just too much effort.
But everything will kick off soon and you will be well on your way.
Thanks for your comments Lulu34
Had a very bad day cant stop crying? spoke to breast nurse, my chemo is slightly late due to "oncologist has been away for a couple of weeks so system sluggish at the moment" however asured its not detrimental to my treatment` Mx would feels very tight today thats also normal. Dont like feeling like this............cancelled 3 lots of visitors today, cant face putting that smiley face on. Tomorrow will be a better day, (in answer to someones question it will be nearly 10 wks since op come the appt on the 16th) Good luck to everyone xxx
Hi Jaxette, yes they have some free parking, problem is that there aren't many places and it's always packed. The rest of the car parks are run by NCP and they are notorious for clamping!! They do a discounted scheme but it only lasts 30 days (£10) so I'll get one when I have my radiotherapy but hopefully as I should only have 2 visit per month I'll pay as I go for the others. Nurse did tell me they wont clamp me as long as I've bought a ticket so if I get a couple of hours and it runs over I should be ok 🙂
Still feeling ok, although my head feels a little woozy. Had a bit of tea, just had something light cos I don't want to over do it, they said little and often was best 🙂
Off to do some baking now so I've got plenty of snacks in for while I'm resting up!! Buns, Flapjack and Aunty Winifreds Special yummy!!
Hi everyone-Im sure I'll get to know you all by name etc as time goes on.L4W so glad you didi well today-thatys great news. You should ask your hospital about free or reduced parking fees as you have to be there for treatment.I know the hospital I attend does that so its a wee bit of help.Im glad to have things moving-I must check what type of heart scan they re gving me-I thought it was a an echo cardiogram-all alien to me but Ill get there!! Glad everyone is doing well and nice to meet you!!
I'm back, 1 down 5 to go....
Jaxette, glad to see you've joined us and here that you've got your start date. I wont have a heart scan till just before I start on the Herceptin (a muga scan)and they have no plans to do a CT scan even though I had node involvement.
Well at the moment I'm actually feeling better than before I went in. I always get nervous with the unknown but it went really well. Like I said I went straight to the chemo bit today but being the worry wart that I am I arrived early just in case they decided to do bloods (they didn't). I had my steroids by injection (made my bum tickle!!) to prevent the sickness and it took 40 mins for all the drugs to be given and then they left me with just the saline drip for 10 mins just to make sure it had flushed everything through. Then I saw the pharmacist to get my anti sickness tablets and mouthwash, made my next appointment and left.
So that's it, told me to take it easy for a few days and make sure I take the anti-sickness pills even if I don't feel sick (easier to prevent than stop) and if I need anything else just give them a ring.
I found out the reason for me not having my bloods done a couple of days before my chemo, it's because I have quite a way to travel so to reduce the expense they do them on the day. It makes sense really at £2.50 a time for the car park alone it gets quite expensive.
Right I'm off to get something to eat, just thought I'd let you know it wasn't too bad 🙂
Don't worry - scans are mostly only given if there's node involvement although it does vary a bit from place to place. You've had the heart one because some chemos (particularly Herceptin) are quite tough on the heart, in fact it's not uncommon for Herceptin treatment to be stopped before you've had all the doses due to that.
I finished chemo in May and rads in June, and I had CT and bone scans and heart checks before I started chemo (well, the heart one was just after because they couldn't fit me in before) but I had quite high level of node involvement (6/12, including one apical node). I had FEC-T and am now on Tamoxifen - no Herceptin for me.
Clear margins and nodes calls for a huge double YAAAAAAAAAAYYYYYYY!
Good luck with your treatment - mine just seems like a bad dream now!