Starting Chemo in Nov 2011

Public Archive
1221

Jackie thats really poor our unit has volunteers who bring round teas and coffees every hour or so with biccies and then bring sandwiches, jelly and yoghurt at lunch time and if they have left over they offer you second helpings and to your Chemo buddy if you have one.

Maybe next time you should take a companion… My Sis is great she goes out to the shops and brings juice and goodies to nibble on too… I don’t think I would cope so well without her… But also very drowsy after treatment and I know it’s nice not to worry about driving home again afterwards.

We also have complementary therapists in the unit and I got a fab foot massage on thurs and booked in got another on 29th.

Miserable day here cold and snowy so curled up under the duvet.

L4W are you taking laxatives as they can cause wind, bloating and tummy cramps before they start working… However also are symptoms of constipation so if you don’t have laxatives like senna or movicol I’d recommend them… Hopefully you will have a restful day to make up for your lack of sleep overnight.

Apple street sorry you have had so many problems but I love your sense of humour… Hope they can get your infection under control.

I had. Hickman put in on Monday and although not pleasant it is great now… The first day or so it’s a bit tender from the bruising but don’t even notice it now.

Have changed my profile pic to me getting Chemo on Thursday… You can see how Gail managed to spot me in the crowds lol.

Love and hugs pretty ladies xxxxxx

1222

Thanks for the advice L4W i think ime just going to stick to my manuka honey and air on the side of caution here . your right about the paracetamol as well, my BCN said no but yesterday the unit told me to take paracetamol , what do you do , i got advice of jean and got some codiene to take but honestly this confusing imformation makes a stressful situation worse.
Hugs Jackie xxxx

1223

Aww Lulu love the pic haha you look fab, OMG ide love to be coming to your unit Lulu it sounds fab . hope you have a good weekend and stay well.
Hugs
Jackie xxxx

1224

morning november belles

lovely to read all the posts, you do cheer me up.

a quick on from me. i went to a workshop yesterday by this guy david hamilton, who was a chemist making drugs and running drug trials until he got more interested in the placebo effect and how your brain affects your body. anyway, it was really interesting, he gave loads of scientific examples and resent studies on the benefits of meditation and healing visualisations (like your white knights jean), then we did some practice. mostly it was really convincing but the inner sceptic in me always maintains some doubt.

but here is the book his talk was based on if anyone’s interested

amazon.co.uk/How-Your-Mind-Heal-Body/dp/1848500238/ref=sr_1_1?ie=UTF8&qid=1323511054&sr=8-1

i’ve also been wondering, with so many people hitting half way, about duration. most people seem to be on a 6 chemo schedule, but i’m on 8. i think libralady you are too? anyone else? i’m worried we’re going to be bouncing into the walls talking to ourselves while everyone else has moved on to ‘starting rads in february’ or whatever.

love xx

1225

psL lulu i LOVE your pic, wish we could see it bigger …

1226

Thanks Jackie and judes… If your on FB I have a link in my profile and you can add me it’s bigger on there.

Apple street just had another thought about your Hickman line it might br worthwhile to get a bra top, tightish vet top or similar for wearing in bed so you can tuck your tubes in without being constricted by a bra… I have one of those over the head ones which isn’t too tight and can’t tick it in… It’s fine in a normal bra during thecday but in bed at night if your jammies are loose you could tug on it or get it caught especially if you start to forget it’s there.

Just waiting for OH to bring me a roll and square sausage for brekkie in bed…nom nom! I hope!

Love lulu x

1227

Judes about the 6 versus 8 cycles the evidence now shoes maximum effect from 6 and 8 doesn’t give any further benefits but some units may not ave updated their chemo protocol since this has been discovered or some oncologists just don’t believe everything they read or have thier own views… It could also be you are possibly having the same dose but spread out further… Why not ask your onc why your on 8 when 6 is now the norm.

Lxxx

1228

Lulu, Love the pic too :slight_smile: My 2nd visit there was a lady having her final treatment and she was dressed head to toe in pink, it was fab :slight_smile: No not taking any laxatives as not having any probs ‘going’ and movements have been quite normal consistency and regular (sorry if that’s TMI :-)) Did wonder if it’s related to periods or lack of, haven’t had one since my 1st chemo session!

Jackie, that’s shocking. I didn’t quite get the 5* treatment that Lulu gets but they do come round regularly with tea/coffee and biscuits :slight_smile:

Shelle, glad you’re feeling brighter today and enjoying your Yorkshire tea, it’s the simple things in life that give us such a lift :slight_smile:

Time to get dressed now all the lazy bones have surfaced :wink:
t.t.f.n.
L4W

1229

Lulu, LOVE your chemo wig!! I want one!!! And Paula, I forgot to mention the last time I posted that your wig looks great - it doesn’t look too different to your own hair! (my wig is straight - they don’t do curly, unless it’s real hair which is very expensive. Plus, I’d have had to faff about with it to curl it, etc, and I don’t do that with my own, so ain’t gonna faff about with a wig!)

When I had my first chemo, (only had one so far), next is due 19th Dec - My Onc told me that I’d have a nurse with me all the time, that there are lots of breast cancer ladies there, and it’s a wonderful atmosphere. There was me, a lady and her husband in the corner who never spoke (she did look weary, bless her - and she was hooked up before I got there, and was still there when I left, even tho I’d been wearing the cold cap too!), and 2 other ladies that kept themselves to themselves. The nurse did make me a coffee after I’d settled into my cold cap (even tho she left me on my own for the first horrendous 10 minutes, grrr! Then she beggared off again. Thankfully, my mate came in, and went and got brews and biscuits (there’s a cafe just outside the room, and it’s all free - but not much help when I’m attached to a machine, doh!) plus, they then came around with dinner, which was great. But coz everyone else was so quiet, me and my friend felt we were being far too jovial and loud. Well, they’ll just have to put up with that! I REFUSE to be miserable!!

Judes, I’m on 8 lots as well. 4 EC and 4 TAX. Well, I think I am. The BCN told me I would be on 6. Then my Onc said I would be on 8. When I went to my first chemo, the nurse said, ‘I see you’re on 6’. So. I’m confused. I’m seeing my Onc on Tuesday, so will ask what it’s to be. I’d much rather be on 6 than 8’ thank you very much. Coz I’ve also been wondering why everyone else seems to be on 6 and have felt that mine must be worse for some reason. Now I know that that’s not the case - so will tell the Onc she’s out of date with her information! No, I won’t really, wouldn’t dare! But I do hope she’s changed her mind and put it back to 6 instead. Ok, I’m waffling now.

Gill, how’s your hair colour gone? Only, I think I may have a go myself too. I quite regularly put in wash in, wash out colours to liven up my mid brown hair. So they’re not strong anyway. Will give it a go, what’s the worst that can happen, apart from making my hair fall out?! What shampoo/conditioners are you using? I just got a tea tree shampoo and condition from the health shop.

Hope everyone is ok, and SE’s are small.
Kym
xxx

(I’m sure there is so much more I wanted to say, but I can’t remember what everyone has said, I need to write notes down as I’m reading the posts - there are so many!)

1230

Hello Ladies,

Thanks for advice about the Wig, Have decided to take the bull by the horns and made an appointment at a salon in Salisbury to get head sorted, Thanks to you all for you useful advice.
I hope you all well and not suffering to many SEs, Love reading the posts they really keep me going, I feel for each and every one of us and our familys, C…py Breast Cancer,
Big (((Hug))) to All xx

1231

Hi Kym

I’m still doing ok since my 2nd FEC yesterday, slept ok although I did wake every couple of hours for the loo cuz I’d drunk so much water lol. Feel ok so far, have learned from last time not to eat too much or over do things e.g. WORK lol.

I’ve had my porridge, but had syrup instead of Manuka, will leave the Manuka to have with apples. Also had a carton of fresh pineapples yummy and lots of water, got 3 days supplies of anti-sickness tabs and a box of back up Domperidone to take as and when if I need them, thankfully not sick last time. I don’t feel as anxious as last time, it’s only when unusual things happen, or negative thoughts enter your head, but think I’ve got alien well under control now! lol hehehe

My chemo unit was very quiet yesterday afternoon, there were only a couple of others having chemo, we were the last sessions of the week, they were actually closing down as my saline drip finished off. The found a really good vein in my hand which was just above where my thumb ends, the blood spurted out when nurse put the needle in, she was well impresed, me had horrified look on face lol, but she was it worked a treat and went through half an hour quicker than last time!

Did anybody see the One Show last night - there was a woman featured who had BC and a mastectomy, she had a reconstruction using her tummy fat, it was an 11 hour operations :o( But she’s fine now and much happier as she felt very lop-sided, her other boob was huge! The feature is probably on I-Player.

Lulu - loving the look hunny, you look fab! We we should all wear pink wigs and shoes when we meet up in the Spring or whenever, I can do weekend anywhere really looking forward to meeting everyone!

My wig feels great now my hair has nearly all gone, it’s less itchy and lovely and warm - it was very frosty here today, don’t think I’ll be venturing out, will do some online shopping instead :o)

Kym - very best wishes for Monday 2nd chemo, and don’t worry if you’re down for 8, it doesn’t mean it’s worse than all of ours, my Oncy said I’m booked in for 6 but to allow for up to 8 or 9, guess it depends on response to treatment.

Josie - sorry you missed yesterdays chemo, hope you’re ok and get another date soon.

Warmest hugs to all

Paula xx

1232

hey, thanks lulu. my onc is supposed to be a real hotshot, works at UCH and harley street, publishes loads and everyone speaks of her in revered tones. i’m actually having 4 FEC then 12 tax in lower doses, weekly. she said it was the latest 4GL (?) regime, based on research in germany and increasingly used in america (or something). i did ask why i was having more and she said it’s because i’m young and healthy and can tolerate it, and maybe because i have grade 3 tumour, multifocal, with 5 nodes affected. she said she wanted to give me the best chance. and i trust her, so am ok with it, although it’s six months of chemo and does feel like a bloody endurance test.

i have an old red party wig somewhere in my cupboard, going to dig it out.

xx

1233

good wig paula x

1234

just done my 10th out of 10 injections. yay. i thought i’d try under my belly button, just for a change, but it was way more sensitive. tip: stick to the fatty adjacent areas (not that any of you have fat stomachs, of course).

1235

Hey Kym

Im the same as you x4 FEC then x4 TAX then x15 rads over 3 weeks.

I too wondered why many have 6 and im on 8 and also wondered whether my Onc isnt telling me something - damn demons!! I hate the dark thoughts. Sometimes I get scared and dont ask. Im still all new to this and I think Ive had so much info thrown at me in recent weeks I cant handle anymore just yet.

1236

Gurrrrrlllll - I have plenty of fat for all of ya’ll

1237

Shelle - I’m with you on the Yorkshire Tea, it’s my fave the Yorks Gold blend, lovely! Thankfully my taste buds and smells have so far remainded normal!

Judes - thanks for the link, I am interested in the mind over matter stuff, I think if we can learn to control our minds more the worries calm down.

Jackie, I got the ‘jitters’ yesterday when I sat down in the chemo unit my legs were shivering a bit like jelly and I noticed when my chemo was going through and I lifted my hand it was also jittery. I think it’s the fear of seeing the tray of drugs, once they had all gone through I felt a little light headed, but it passed after a half hour or so, feel a bit tired this afternoon, but think that’s because I’ve got the heating on full blast and having a nice relaxing day.

The chemo nurse gave a handy Tip, she said all those going for chemo when they are in the car travelling to the hospital to wear gloves and keep them on, also take hot water bottle in the car and keep hand on it as it helps when they give the injection.

I’ve got 6 x FEC-T once every 3 weeks on a Friday. The Oncy said to allow up to 8-9 depending on how response is after scan at half way. My next one is 30th Dec which will be half way! Mastectomy around March time, then 3 weeks of radiation (15 times) at 2 minutes a go. My boob seems to have gone smaller than the normal one, I think it will be like a shrivelled up prune by the time I’m finished, which is probably why they are going to cut it off lol.

Think I’m going to book a luxury holiday for next summer :o)

Paula x

1238

Good afternoon ladies.

It has taken me ages to read all the posts.

Lulu - I love the pink wig

L4W- After my last FEC (no 2) I suffered dreadfully with indigestion and wind. I took rennies (which I do take on occasions) but they didn’t work. I had some lansoprazole in the house which I had taken previously when taking ibuprophen as ibuprophen upsets my stomach. I rang the unit to check if I could take lansoprazole, they agreed but told me to speak to my ONC who I was seeing 2 days later. My ONC said that I could take lansoprazole right through my chemo whenever I thought I needed it. The lansoprazole worked for me. Therefore I suggest you ring your chemo unit and ask them if they would prescribe you lansoprazole, they may refer you to your GP which they wanted to do with me until I told them I already had some in the house.

Jackie - That’s a long time to go without a drink. I am really suprised that no one even gave you a glass of water. My hubby comes with me so he can always go and get me a drink. There is a free drinks machine for the patients in the unit’s waiting area. Chemo buddies can go around the corner to the little cafe and get themselves a drink and anything to eat and bring it back into the unit. We are provided with sandwiches, crisps, jelly, ice cream and bananas if we are there over lunch. This is brought round by a macmillan volunteer, who also brought round tea, coffee and biscuits mid morning. I must admit I wouldn’t want to go for chemo on my own, everyone seems to have someone with them. No one seems to speak to anyone else they all keep themselves to themself. There are also men there having chemo as well.

Paula - I wear gloves when I travel to chemo and try and keep myself warm by wearing an extra cardigan. Before I have chemo, I have to soak my hand in warm water, then when I am hooked up and having saline my arm and hand has an electric heat pad put around it.

Have been busy today so tired now. Just going to go out to the local craft centre for a coffee and cake and to have a look around the gift shop.

Hope you are all having a good day today.

A

1239

Hi Audrey - yes I love the heat pillow, have that as well and the bowl of water, think my hands were extra cold lol

x

1240

Hi ladys well been in bed all day trying to rest as blood platlets low and hospital told me to rest but i felt ok on first chemo so just got on and did what i normaly did also couldnt say no to anything or anybody , but feel like i should be doing something its so hard but realy just want 2nd chemo and and be ok for xmas for everyone .
Am so glad i found this site as most of the time i just read most of the forums as there so helpful and think that there are so many of us with so many storys that make me sad and happy but most of all so very very hopeful xx josie1