Had my pre assessment. On checking in the receptionist gave me a sheet with a wrist band which confused me. I asked her how long it would take and she said “oh you’ll have to ask one of the nurses” So I go to the waiting room feeling extremely nervous, and there are 3 other ladies in there, one of whom has a full head of hair with a wrist band. So I ask her if its her first time and she says yes and I ask why have we been given wrist bands are we staying the night. She replies probably cause we’re having a bone marrow biopsy. Now I’m panicking thinking noone told me this and I havent even brought my toothbrush. Eventually a nurse came and clarified that I wasnt having the same as that lady. They would simply show me round and have chat take blood today. Phew thats how easily unnerved I am at the moment all common sense out the window, I mean why would i need a bone marrow biopsy?
The first thing they told me about was the picc line I’m to have fitted on the 4th of April and my eyes nearly popped out of my head when they showed it to me. I am so unprepared for this didnt even think about how theyre going to get the drugs in, I thought it was just going to be a simple drip each time. Also I really need to get used to the idea of flushing the thing out its making me queasy just thinking about it. The nurse mentioned about how I must keep it dry at all times or I could get it infected which so utterly confused me because how do I shower? I tried this morning to not get my upper arm wet it was so awkward trying to shower in bits. I did it slowly and carefully than it got wet anyway. I thought I could wrap it in clingfilm but the nurse said that sometimes its not very effective. She mentioned that you could Picc covers that would cover it but didnt know what they were called and thought perhaps i could get them from Boots? Does anyone know anything about this?
The nurse than went through all the side effects one by one and to be honest I do feel ignorance is bliss.
For my mouth she said I need to decide on the most suitable toothpaste and mouthwash so I went to the chemist but couldnt decide which is the most suitable so I got an alcohol free Listerine and corsodyl daily toothpaste and mouthwash. Not sure if I need anything else.
She didnt say anything re food other than wash everything and eat healthly now I’m wondering if I should have mentioned that I was vegetarian but to be honest I agree with you DJ007 I’m going to eat whatever I feel comfortable with and will definitely be putting food away in the freezer for my down days.
She mentioned the cold cap thing but said something about only saving 70% of my hair and it goes on 15 minutes before and after treatment. I just want to be in and out as quickly as I can to get back and spend as much time as I can with my son so I decided not to do that. Hopefully I get to live longer allowing it to grow back so no worries.
The weird thing I’ve noticed is how my perspective and reaction to things is changing. today at work I was in a meeting with a person who was consistently making catty comments aimed at people not present now normally that would have irritated and to be honest I would have responded with a suitable retort. This morning I just found it funny thinking come on your a grown man just drop it. And at one point I couldnt stop myself smiling and had to keep pretending I was chewing my lip deep in concentration so I didnt annoy him further.
Me and my son watched the jungle book I just love that film.
We keep playing the "Bear Necessities " song over and over again as we sing along to it,I have a very deep view of that song…
“dont spend your time lookin around for something you want that cant be found.
When you find out you can live with out it and go along not thinking about it.
I’ll tell you something true. The bare necessities of life will come to you.”
La la la there I go again.
I’m just so glad I’m not going to be alone with this thing. Thank you everyone and good luck Repunzal x
Gosh so much useful and encouraging information on here.
Rapunzal - the picc line totally freaks me. I have to have one as have 12 months of hereptin after the chemo and know this is the best and kindest thing for me and my veins. When they took blood before surgery, it took 5 attempts and I ended up black and blue.
The thought of having a tube worming its way through my veins to be just above my heart… and what if the end comes loose in my sleep and I bleed to death? is it going to hurt? I am sooooo squeamish.
Prior to 31st january (day of diagnosis) I was a rational, fairly well balanced professional woman running her own business. Now I am like a blooming rabbit caught in the headlights half of the time. I find that the medical profession keep dripping bits of unpleasant information - every time I go to hospital, they tell me something else I would rather not know justifying it as helping me to make an informed choice. And what fantastic choices they give me… a picc line or a portacath. It’s hardly choosing whether you want cheescake or trifle is it? Humpf.
I do not want to see a picc line let alone pictures of the procedure. Goodness, I didn’t even want to see my babies until they had washed the gunge off them and wrapped them in a blanket.
Its 10 days since I last saw the onc and still no date for chemo starting. Phoned them up today and explained I have to manage my diary, I need to be working one week out of the three. Promised a call back with date - they haven’t phoned. Wonder if BUPA would take me on retrospectively LOL
I don’t need herceptin and so managed all my chemo through a canula each time - although my veins were starting to suffer by the end and it can take years before they get back to normal.
If I did need herceptin I think I would of pushed for a portacath rather than a picc or hickman line. I’m very active and ride horses, etc and I would have been scared of catching it and there’s also the flushing and risk of infection.
With a portacath (I believe) it sits under the skin - more of a proceedure to fit it though.
Hi everyone
I didnt know there was an april chemo thread so started one then found you so hope you dont mind me joining
I went for my pre assesment yesterday and burst in to tears as soon as she started talkin and had a mini melt down in last 24 hours but after reading all your comments i think it might be doable hopefully if we all stick together
Im having 6 FEC T and hoping to have cold cap i should start in 2 weeks time
lots of love #
Tracy xxx
Hello Tracy and welcome. I think we’ve all had our melt down moments. Although I didn’t cry at pre-assessment I blubbered like a baby when my ONC told me it was best for me to have chemo and gave me the cold hard facts re survival and recurrence - my mortality and morbidity calculated by a computer programme. At the time I actually felt so hopeless I wanted to give up run away and pretend nothings wrong.
But when you read the posts from the other ladies who have gone through this they really make a difference Yesterday when I went round the chemo ward and saw the other patients I actually felt so so encouraged by the bravery and stregnth I saw. There was one lady having chemo for cancer of the spleen diagnosed 9 years ago. She was smiling and joking. Also met a young boy who had cancer in his leg just getting on with it, he wanted to go to the cinema later.
Our life has been irreversibly changed by things completely out of our control but life hasnt stopped Now its time we take control and fight back. It’s the uncertainty of cancer that is scary but I’m definitely gonna do everything I can to be cancer free and to make sure this sneaky nasty disease never ever comes back. We’re fighting back
As DJ007 says hang in there - chemo passes. I read that and got a calendar wrote exactly that on it and will be crossing the days off.
Rep x
Hi all
Ok, hadn’t even heard of a picc until now have to say it made my stomach turn, just hope I follow in your footsteps DJ700 and I’ll take my chances with collapsed veins.
Hi teabelly, sorry to hear your assessment was a bit traumatic.
I think when you get to the stage where your discussing the actual treatment and everything involved, it suddenly all becomes real and who wouldn’t get scared, I’ve still got my onc appointment and assessment to come and I’m just trying to decide whether I’ll be a nervous wreck or quivering mass, but in actual fact it’ll probably be both!!!
I’m giving the cold cap a go as well so we can compare results, one things for sure, it gives a whole new meaning to ‘brain freeze’
Had my pre-assessment today and feel very positive and bizzarley, almost looking forward to it starting. the chemo suite is nothing like I had imagined. It is such a cheery noisy place with lots of laughter going on.
I have been booked to have a portacath fitted and am pleased about that. Just day surgery. Thank you DJ for your encouragement.
I am having 4 FEC and I thought 12 Herceptin but today been told I will have 18 Herceptin, was also told the fantastic news that apart from the first 2, all my Herceptins will be given at home as the portacath allows that to happen. Really pleased as wasn’t looking forward to all those drives to the hospital and as its an old building in the town centre, there is no on-site parking.
I am slowly understanding that the reality is never anywhere near a bad as what my silly head can conjure up - usually at 4am.
Repunzel, i agree about the meltdowns, we all have them, but the good news is, we don’t all have them together so there is always someone to pull us up and out of the molasses.
Hello everyone
Thank you for my warm welcome i feel better already knowing i have all this support
Rae glad you got through your first chemo so well im having same treatment as you so hopefully we can support each other they told me the last 3 are the worse the t part is that what they told you im trying cold cap and hoping not to loose hair but said i would loose every other hair this is what upset me most hope you are feeling well
Pesteringpixie glad your pre assessment was ok i was shaking with fear and your right there is always someone on here to pull us up and i do feel better after reading all your comments and so glad i joined we can get through this together
dstace we can have brain freeze together also they say sucking ice or ice lollies are good how cold are we going to be ???
Repunzal i have my tour next week so hoping i cope better i cried when i saw a lady coming out with no hair i felt so sorry for her i think ive got to harden up to get through this journey but im sure i will with the help of you lovely ladies
when i got to hospital i checked in on my phone but by mistake i checked in on maternity ward that got everyone talking when i came out i had more message asking if i was expecting least it made me laugh
Have a good day everyone
lots of love
Tracy xxx
Great that you have popped in to give us some encouragement. I am having 18 herceptin - so am having a potacath. Did you have one?
Teabelly - glad you are feeling a bit brighter and funny about the maternity ward. tell you, I have had 3 labours so this chemo is going to be a breeze.
Am having an interesting time on the eyelash front… have been told that with FEC will loose my eyelashes, well as i intend to carry on doing some work, I need to look as little like an alien as possible. So went to see about semi-permanent eyelashes but no good as they stick them onto your own eyelashes, so as my real ones drop off, the false ones will drop off too.
went into local department store and lovely lady on mac counter has booked an appointment with me to teach me how to apply false lashes. Also sorted me out with fantastic eyebrow set. You paint on a sort of wax and then brush on the powders and it looks better than my real lashes!!
Upside to this hair loss - no waxing , no hairdrying, no straighteners. Off to get a couple of gorgeous wigs on Thursday.
lady recommended an online store called Annabandana - they have lovely scarves and sleep caps and very reasonable prices, waiting for my first order to be delivered.
Am looking at this chemo thing as a learning opportunity - LOL
have a great weekend fellow Easter chemo bunnies:)
I am from the January thread, will be getting my 5th juice on Monday. I won’t lie to you, chemo is not a pleasant experience but it is nowhere near as bad as your imagination makes it out.
On hair loss - lashes and eyebrows will be disappearing gradually, not like your hair that will shed like crazy.
There is a charity that does make up tips for chemo patients - well worth going to one of their sessions. Not only do they teach you how to draw on an eyebrow and ‘fake’ some lashes when yours are sparse but also you get a fantastic goodie bag! It is called Feel Good Look Better.
Best of luck to all of you! Who’s first next week?
Hiy pixie,
I don’t have my portcsth fitted yet but I am having one. I want to try and keep my veins intact
Re headwear I also bought from suburban turban and r and r confidence. For tips on how to tie scarves there is a course I went on called headstrong. They were lovely and helped me.
There is also a fab lady on line that has alone is that has given some great advice re eyebrows and eyelashes. If you google ‘eyelineher’ it brings up her blog. Have a peek.
I can honestly say I feel ok 7 days post chemo. I has a few glasses of wine last night and went out for a Chinese. So hopefully you guys will be the same. Minimal side effects for all
hi ladies
Just getting ready for a night out whilst i still look and feel normal meeting alot of my friends for a pre chemo drinks night
going to look at the headscarf websites and book myself on headstrong course it sounds good
have a good weekend
tracyxx
Thanks for the tips Rae - goodness having chemo is like doing a beauty course, there will be more fake of me than real. Husband will wonder who this goddess before him is LOL
Good Evening Ladies
Hope everyone is having a great weekend.
Great to see you had a really positive assessment PPixie, definitely think the atmosphere makes a heap of difference, feeling less anxious about mine now :-)
Been having a go with some lashes, no problem getting them out of the pack or getting the glue on but every time I get within an inch of my eye lid I start to shake and either poke myself in the eye or end up with it half way up my lid…not a good look. Got some nice scarves on simply wigs website as well.
Thanks to Julianna, I had a look at the ‘look good feel better’ site you mentioned and it’s brilliant, turns out there’s a excellent cancer support centre(The Big C) next to my local hospital and they actually have the workshops there every other week so hope to get up there next week sometime. They also do a confidence kit that you can request, all they ask is a donation and postage, so well worth it. Check out the ‘give as you live’ website as well, great idea.
Hi raechi, well done with treatment number one, must be good to get the first one under your belt, Chinese and a tipple sound good to me. Know what you mean about corrective text, I’ve lost count of how many times I’ve posted complete gibberish!!
I’m with you all the way Tracy, in the grand scheme of things getting healthy should be our main concern, but our hair is such a major part of who we are and the thought of loosing it (north and south) just seems to add insult to injury. Bring on the ice lollies…looks like this summer’s gonna be a cold one!!!
Have a great night…raise the roof girlfriend ;o)
A pleasant and peaceful weekend to all
Love
Denise xxx
Hair! It’s part of who we are and, even for the least vain, an integral part of our identity.
My old hair style was always a shortish v straight bob. I used the cold cap and that slowed the shedding and gave me another month or so when it wasn’t that obvious that it was getting very thin on top. I then had it cut very short - but didn’t go the whole hog and shave it.
Most of the time - at home and work - I didn’t wear anything. Much of the time I found my wig too hot, but useful round the chiller cabinets in the supermarket. Personally I hated scarves - I looked like a peasant and the screamed ‘cancer patient’ at me. I did wear a couple of little sun hats that I got very cheaply online. As soon as I had enough hair that you couldn’t see my scalp, I ditched the lot.
My eyelashes and brows survived 3 x FEC, but gave up during taxotere. - The time I saved on drying my hair I spent drawing in eyebrows and applying eyeliner!
I hope you don’t mind me joining in. I posted on the thread that Tracy started and then realised she had jumped ship to yours…better us all be together during our chemo journey.
I’ll give you a brief run down about me…29 years (30 later this month), diagnosed in January 2012, Grade 3 ER+ ILC, 1 node involved, mastectomy, full node clearance and immediate DIEP recon in March 2012.
I have been told that I will start chemo in the next couple of weeks but awaiting the start date, 6 x TAC, may possibly undergo rads and then 5 years of tomoxifen and zoladex.
I have had a call from one of the nurses to discuss the SE and to be honest after speaking to her I felt a lot more relaxed about the chemo. I have always known that it was going to be a MUST for me and was fine about it but the reality of it left me very scared. All the SE sound doable and as the nurse pointed out to me, they are all temporary…I think this helped me immensely.
My biggest worry is losing my hair. I have spent the last 4 years growing my hair to the length it is now and I am not going to enjoy it anymore I go to the hairdressers on Wednesday to have it cut into a shorter style, less traumatic then for when it does start to come out. I will get a wig and some scarves and I know that it will grow back quite quickly after last chemo cycle.
Sorry for rambling on ladies, I must sound awful worrying about my hair when really I should just be grateful that having all this treatment will help me beat the C into oblivion.
I look forward to taking this journey with you all.
Hello everyone was surfing late last night and found this thread. To be honest, I’ve avoided any forums or websites because I didn’t feel that it was all that big a deal… however, I wonder if you would let me post on this thread as somewhere to share info and get a bit of positive support as I’m starting chemo in April 2012.
About me: I’m 50 (only admitting to 42 though) and in the last five weeks have been referred by my GP, tested (exam, mammogram and ultrasound plus 2 x ultrasound biopsies), diagnosed with breast cancer (2 adjacent masses found, grade 2 although I don’t have much of the other info to hand) and operated on. Was a bit of a shock to say the least. Am now at home recovering from the removal of the cancer and the reduction op to my other boob to match it up.
I’ve taken it in my stride up until now and it’s only when I’ve been told that I’m to have chemo as well as radiotherapy I’m beginning to think this is a bit serious! TBH, I’ve got lots of mates and friends supporting me and my mother-in-law has been a total inspiration as she had breast cancer nearly 40 years ago and is still alive and healthy!
I’d sort of convinced myself that I would sail through everything, have radiotherapy and everything would be done and dusted within a couple of months. The fact that I’m now looking at 18 weeks of chemo is a bit daunting although I really am taking one step at a time. And while I’m staying positive, there are things that are worrying me and I know that my sense of humour will carry me through.
I guess the reason for my post is that it would be good to have some people to chat about who are going through the same thing as me. Having read the thread through, I’d not even given a though to eyebrows or eye lashes… only to the fact that I might lose my hair and that I’d intended to get a blond wig for the first time in my life to be a blond. Will be checking out the websites recommended and suddenly it all seems very real.
Thanks for letting me join the list and keep positive!
Hi Natalie
Good to have you on board, all of us here are starting sometime in the next few weeks so you’re in good company.
After the initial shock of diagnosis I’ve been much the same as you, quite level headed and resigned, but I have my onc appointment on Monday and I have to admit I’ve had a few wobbles over the last few days, think its probably the realisation that this is it now, it’s actually going to happen.
Good news that your nurse has managed to put your mind at rest though and I’m sure you’ll get all the support you need from all the brave ladies here.
We all have different ways of coping with our fears and worries, personally I always think that I’m not as strong, I’m more scared and not coping as well as everybody else, but when you hear of all of the other ladies experiences it makes you realise that we’re all in this together.
I don’t think there’s one among us that’s not worried about loosing our hair, for most it’s our crowning glory and I definitely know what you mean about feeling vain, when my surgeon told me my results and asked if i had any questions, I almost felt guilty mentioning it !!
I get so frustrated when people say " why are you so worried about loosing your hair, you should be grateful to be alive’ and even though I know they’re completely right, it’s still one of my main fears, so please ‘ramble’ here as much as you need, that’s what this place is all about
Have a great day
Love to all
Denise xxx
LOL
have to say it made my stomach turn, just hope I follow in your footsteps DJ700 and I’ll take my chances with collapsed veins.