Shelle that’s pants. It’s so annoying that some hospitals are great and others a pile of poo. It really is a postcode lottery.
My onc told me to have the flu jab and penumonia (can’t spell) before my chemo. I had them both 9 days before and I was fine, just a bit of a sniffle and a slight temperature.
Right, back to more housework before I go to hospital to see my BC nurse
Lizzy x
Hi Shelle the oncologist that I would normally have seen was on holiday so they booked me in with another one so that I didn’t have to wait any longer than was necessary.
I was told by our practice nurse that she couldn’t give me the flu/pneumonia jab less than 4 weeks before start of chemo but the at pre assessment yesterday the nurse said to speak to consultant at my next appt and I should be able to have it 5 to 7 days before my 2nd session!!!
I think the reason is that they prefer to be the one to decide what you have as they have all your records rather than someone just going on protocols.
Jean xxx
Jean it’s the pneumonia jab you should ideally have at least 4 weeks before Chemo but the flu jab can be during Chemo… The pneumococcal one can be made inactive from Chemo if given less than two weeks before starting Chemo so in Lizzy’s case it’s likely she will need a booster 6 months after Chemo is finished.
Shell there are waiting list targets and I doubt very much that you are still within these… Contact patient liaison at your hospital this is unacceptable.
Lulu x
Just discovered this site so still catching up with all the posts on it. I’m on 4xFEC then 3 or 4xTAX to shrink 2 tumours in left breast before surgery. Was scared that this meant the cancer was too big to operate, but I’m now glad it puts off the surgery just now so I’ve more time to get my head around it.
First chemo session was on 27 October, by that point I was more worried about whether it had time to spread between the scans 3 weeks earlier(which were OK at the time) and starting chemo than about the side effects. I just wanted to get started.
Like some of you it wasn’t too bad and I was back at work on 1 November, although think now I should maybe have taken an extra day off as ended up being a bit knackered. Anyone else coping with working through it? My BC nurse wanted me to take the time off but the oncologist was in favour of working. I don’t want my whole life to be about the cancer and also I want to save my sick leave for the surgery and radiotherapy. I’m hoping to do some work from home but my company’s dragging their heels about organising a laptop, so I stayed at home a couple of days for the low point of my immune system, even though I feel pretty good just now.
Hair was starting to come out a bit this morning. Just a few extra strands but I didn’t want to be at work pulling out handfuls in a day or two, so finally bit the bullet and got it shaved. I feel really good about it now I’ve got it out of the way. Didn’t really expect it as I was so upset a few weeks ago when I had it cut short. I found I was even getting a bit impatient waiting for it to come out and my head was starting to get so many sores. I’ve read that sometimes it starts to grow back on TAX so here’s hoping.
On the flu jab, I was told to get it as soon as possible when I got my diagnosis. Definitely seems to be some mixed advice there.
hi all
a quick question: with all this talk of drinking plenty of fluids, can you go to the loo during chemo? i’ve been told it will take about 3 hours and if i’m taking in a lot i can’t go three hours without letting some of it out …
xxx
Me again!
Last post for today…
Lulu I contacted PALS and looked up Nice guidelines (4 wks should be seen by) Pals are concerned at least they will look into it , my appt wont change now but it may help others. They will ensure my treatment is timely and act as my advocate. Its strange I would be the first person to advise all this and I am good at common sense and I feel I am able to communicate very well BUT in this instance I have been very meek and accepting…UNTIL TODAY (ROARING noises being made …I feel my fighting spirit emerging again, everyone best look out) Song suggestions please
kung foo fighter perhaps?
night all shelle xx
hey shelle
well done on fighting your corner. it’s really not on for them to delay you. is there no way you can be seen sooner? and what you say about being uncharacteristically meek struck a chord with me. i’m usually quite bolshy and ‘in touch with’ my rights, but somehow since BC i just go along with what’s said and don’t ask too many questions because i don’t want to bother them etc etc. i think it’s because we feel so vulnerable in their hands we don’t want to upset them. but no more. roar!
xx
evening All
Jude, you can go to loo no problem, they have to change the IV bag for the different drugs and run a saline bag through between each drug, so theres time for toilet break. And you’ll probably find thats its after that you’ll be drinking loads
be prepared for a dodgy tasting mouth after, ghandi’s flip flop!! Eurgh…
Gail - a quick hello to you, i’ve been off work since surgery at end of Sept, i have been thinking about going back, but like you nurse advised best to stay off, i’m concerned about using all my sick too, but i really don’t feel up to work 6 days after chemo, so will just see how i go.
good luck to anyone starting tomorrow, i will be getting fitted for a prothesis (spelling??) that’ll be strange
Gill x
Judes, as Gill said, don’t worry. You will need to wee as they put quite a lot of fluid in while the chemo is going in so it’s more diluted to try to protect your veins.
If it’s anything like my hospital even if you’re hooked up to a drip that’s plugged into the mains you’ll be able to unplug it as they have a battery in as well, then you just go walkabout to the ladies, guiding your drip stand along. If it has wonky wheels it’ll have a mind of its own!
The only time it was a bit awkward was when they were putting in the “E” part of the FEC (the red one). At my hospital they did that by hand through a syringe whilst the saline was going in so they could slow it right down or stop quickly if hurt (that’s the one that really goes for your veins). Even then they could stop between syringes if I needed a loo break.
Jane xxx
Shelle I’m glad you have made your stand and that PALS are supporting you… Pity you still can’t get our appt any sooner though.
Hi Gail. Your having Chemo same day as me but I’m on a different regimen having 6x carbo and tax. My head starte getting sore last night an hair coming out this evening in handfuls… Quite surprised it’s so soon as it was day 17 last time and this is only day 13… Also I’m eating like a hog!
Lulu x
Hi Girls
I’ve got my first pre-chemo meeting with Oncologist tomorrow, I was just wondering what is likely to happen - can anybody advise?
Thank you
Daysie x
Daysie, at my pre chemo meeting with the onc she talked through why she was advsing me to have the chemo, what it would do and all the side effects and then asked me to sign the consent form. My BC nurse was there as well. The onc also examined me and checked that I’d got over the surgery ok. I’m also to have herceptin, possibly rads and Tamoxifen but she said that she would discuss that later as she wanted to focus on the chemo.
I’m off to London for a few days to see friends (may as well a
make the most of my time off work). I just hope my hair stays put and I don’t get ill while I’m away!
Lizzyxx
Hi Lovely Ladies
You’ve all been so busy today I’m going to have to start taking notes 
Had a really good day, went out in my wig, just to the local garage but the old chap said, ‘ooh I didn’t recognise you, I like the new hair’ made my day I can now recommend a meltdown, if you feel one building just go with it, let it all out. Scream, shout and cry, whatever you need to do cos I feel really energised and so much better for it.
Delicate subject re hair loss, the lady garden is starting to go (very quickly) and I would advise a quick trim if you can cos it’s not painful but a little uncomfortable and could be embarrassing if you’re out and about 
Head hair is staying put for now and I’m treating it with Aloe Vera Gel to keep it in good condition and reduce the soreness.
Daysie, same as Lizzy for the appointment, onc just went through everything and I had bloods done. Most important is you should get your start date and a pre-assessment date. I pestered them for mine before I left, saved waiting for another letter to arrive
Libralady, Judes and Tricia Good luck for tomorrow may all your SEs be little ones, see you on the other side of No.1 (((hugs)))
Got some new Family Tree software today so it could be a late one for me, beats trying to track the sleep fairy down.
t.t.f.n.
L4W
L4W I love doing family tree stuff too… It’s great when some long lost relation gets in touch. glad your over your meltdown hunny…
I was most surprised re the hair loss as last time it was my foof that went first but this time it’s my head.
Daysie my onc appt was similar… Went through pathology and why Chemo was recommended, what regime I could have and do consent and ask questions… Had height and weight done. And that as it really.
Good luck tomorrow ladies.
I’m off to get bloods done, then Maggies centre for my monthly young women group and then afternoon tea (how posh) with one of my breast buddies.
Lxxx
Hi November girls
Gill13, I am having chemo at home so have to use the portable gell cold caps which we keep in the freezer. I think the one you are using which is kept at a permanent temperature is better but either way it is touch and go whether it works or not. let me know how you go on. I am now at day 6 after 1st fec and still have chronic indigestion, otherwise not too bad. i did have a big red face for 3 days probably due to the steroids they make you take as well. my head feels strange and warm and I wonder if this is the first sign that i will lose my hair. i hate feeling so helpless about what will happen, but feel guilty about wishing my life away until it is all over.
Love
GingerrizzieXX
Hi Everyone. Well, you have all been very busy, but I suppose that I have too.
Spent yesterday at hosp having pre chemo chat with nurses and got my portacath done which was a bit of a shock. It really hurt - and still does! Its a more full on procedure than I had quite realised in proper theatre even though its local anaesthetic - think I would rather have been knocked out! But hopefully soreness will pass and it will show it was worth it once I start 6 fec and 18 Herceptin!
First fec next Wed 16 Nov and feel sort of ready for it now. Have been to amazing local lady this morning for haircut and now have shortish bob in preparation for the cold cap. She also runs make up sessions and scarf/hat advice sessions so am chuffed to have found her! Also got flu jab this morning. Phew. Feel shattered now - and have not even started treatment yet!
Sounds like a few of you have been going through it a bit last few days so I hope you are rallying round again now - amazing how you think you are fine and then suddenly you are a gibbering wreck! But all of that is fine on here - that’s why its so brilliant!
Good luck with treatment and se if you are starting this week. This time next week I’ll be there doing it - gulp! x
Hi Ladies
Well, im home…all went well, i have had my first toxic juices - i had a bit of a “moment” on arrival when i got called through to my little “sitting area” - but it soon passed - just needed to get that bit of anxiety out.
Lord the tablets ive come home with *SHOCKED* i will rattle all week!
At home now, feet up watching “criminal minds” with a cup of tea and a litre bottle of water…lets hope any SE’s are teeny weeny ones…if at all!
so pleased it went OK for you libralady and that all your SEs are very very minimal.,
Lulu and L4W I am in contact with many cousins in US and Oz that I never new existed before I started family tree and friends with them on Facebook too, its great.
OH taking me out to dinner tonight before 1st session of chemo tomorrow so off to get ready.
Jean xxx
Hello All
Gingerlizzie I had a red face for a few days too after my fisrt chemo session. My chemo nurse told me that I would probably go red - it’s one of the FEC drugs but I can’t remember which one. My hair started falling out last Sunday which was 13 days after my first FEC. My head is very sore and tingly and I am losing a bit more hair each - I’m moulting. I’ve noticed that my hair parting is now wider but I haven’t got any bald spots yet.
I’m collecting my wig tomorrow and have an appointment with Headstrong. Have started wearing a scarf some of the time in the house as I was baking and didn’t want hair in my food. Getting a bit used to wearing a scarf now and seeing myself in the mirror. I’s the soreness I don’t like even putting my head on the pillow at night hurts - it takes me a while to get comfortable.
Best wishes to you all you have just had chemo and to those who are due for their chemo. I am trying to be positive at least I have started chemo so I am counting down only 5 sessions to go. Just hope the side effects are minimal for myself and all of you.
Bye for now