Hope all feeling ok today.
Well D day is here! Great tips from you all, thanks. I think I've got everthing....warm stuff too for cold cap. Had bloods & echocardiogram yest and all ok to go. Not got aloe vera juice yet! Just had egg on toast & a banana, as not there till 12.30 & I'm going to be quite a while with cold cap. Hope SE gentle from tomorrow!!
Ann - I'm your chemo buddy then, as I start today. I was diagnosed 23rd Nov, so only 1 day diff! Good luck today. I was advised not to drive on own, as one lady took a turn & fainted & although was perfectly fine after, she wasn't allowed to drive her car home. My friend is taking me & staying. She's used to it as me and her went with our other friend to hers. I didn't want OH taking more time off work either.
Jo- no I've not heard of Kettleshulme. I'm in Urmston, near the Trafford Centre. I've been with family history clinic at Wythenshawe for years & so now with my family history they want to do genetic testing. I was told originally that it takes up to 9 months, but were going to rush it. Went for a simple blood test Monday & they said 5-6 weeks, which I queried & it's because they just doing BRACA 1&2 for now, not the whole genetic testing. You're supposed to have councilling too first, which I've not had as they wanted to do bloods before I started chemo. Depending on the results, I may want to go for double ms after treatment. Also, it has an affect on my 2 kids then too in the future, even my son!
Hugs to all and take care,
A FB group is a great idea, so is anyone up for setting it up as a private, or secret, group?
I am a week on from first chemo, think that's about the same as Jules and Zena. I haven't had any nausea, and don't know if that's because I am not prone to it or the pills I took. I had Emend, ondansetron, domperidone and dexamethasone. Gosh, how that lot rolls off the tongue, eh! I also had the single shot Gcsf jab on Friday.
The steroids or Gcsf, don't know which, definitely made me bloated, red faced and hot flushes by Saturday, and was a bit wired! The out of hours chemo line said it's pretty common and it takes a bit to get out of the system. My onc agreed that I could stop the steroids and will review the dose before next appt.
if any of you have the gcsf, then it did leave me feeling a bit achy, esp in the hips and shoulders, and feeling a bit stuffed up.
As as for constipation, foods that I found helpful with a lot of fibre were Fibre One cake bars ( not particularly cheap) and Ancient Harvest lentil and quinoa pasta ( high fibre and high protein), and surprisingly didn't taste too bad when drowned in sauce!
as for dry mouth, I got salivix pastilles over the counter, and will ask for them on prescription. I didn't like my chemo nurse advice to suck on barley sugars, as I am trying to avoid coating my teeth in too much sugar!
Good luck for those of you starting today. You may want to warm your veins up beforehand unless you are having a line put in.
Dear Lovely Ladies, Maria, Jojo, Jo, Zena, Sparky, Max, Jules, Swampy, Tessa and Sallyann.. Hope I have not missed anyone. I am sorry I have not been online past couple of days. I have been trying to settle in with my family prior to the start of my chemo tomorrow. I now have mobile broadband until I can arrange something more permanent here at my parents home in Cardiff. I live in the South East (Sussex) but I am originally from Cardiff and left in my early 20's to work for British Airways at Heathrow Airport, as a secretary. In 1979 I started flying as cabin crew with Britannia Airways and I was there for 15 years. Most of my working life was in the aviation industry and I "retired" in September 2016 as an aviation recruitment manager.
Following my divorce in May 2016 I decided to take 3 months off and then travel to Australia to see my daughter and move back home to Wales. I have worked for over 40 years so I thought a 3 month holiday was not a lot to ask for.... Well that thought was rudely interrupted by my diagosis on 24 November 2016. A date that will never be forgotten. I guess not many people will forgot the date and the face of person who gave them the news......
Got my wig and had my hair cut short today. Also had a light chicken broth diet today hopefully it will help with the nausea and I plan to eat the same tomorrow. So I am ready for chemo tomorrow I guess. Reading through the posts I see I have forgotten to get some Aloe Vera Juice!
Maria, I hope you are coping well and I will be thinking of your tomorrow. If my memory serves me correctly you start your chemo tomorrow too,
Jo, how are you doing after your first Chemo session
Zena, my cabin crew partner! Hope you are doing ok and nausea is getting better.
Julie: I appear to be the only one that has not been to Ironbridge. Hope you are feeling better...
Tessa, Welcome, hope you are feeling better.
Jojo, hope you are doing good. I don't have a problem with FB provided it is private group....
If I have missed anyone I apologise in advance. I will try to keep up todate with you all now. Question?? has anyone driven on thier own?
Good luck to anyone starting chemo this week who I have missed.
Zena - sorry you are feeling so bad.
Ann - hope it goes well tomorrow - I will be thinking of you.
Jo - I've had a Friends Request on FB from a Joanne Coward - is that you?
I've had a bit of a mare today - despite so much fruit and veg etc and plenty of water I have been in so much pain with constipation. I had a Beauty/Pampering session with a group of new ladies and although it was good I felt so bad. Going to seriously take steps to avoid any more! Today is Day 7 so I will be taking stuff from now on! OH bought me some Aloe Vera Juice so will have some before bed along with tabs!
The abrupt oncologist I met a few weeks ago (a locum) has left! So my 1 week appointment is now next Wednesday instead. Hope this one will be nicer.
Hope you are all okay.
Firstly, thank you for your welcomes and I hope everyone is doing ok today.
I live in Manchester (originally from West Midlands until I was 12- remember going to Ironbridge on a school trip Jules!)) and am being treated at Christies. I would be up for FB too.
Well... had my bloods done yest for the gene testing and then went out for lunch with friends and then for tea with mums from school (with 2 glasses of wine!), so feel I enjoyed my last day of "normality". In work this morn & then off to Christies later for echocardiogram, bloods & see onc for signing the forms etc. I had ecg done 2 weeks ago at first visit to onc. Then tomorrow is the Big Day! The lovely lady at the Family History Clinic yesterday, used to be a chemo nurse, so it was nice to chat to her. She said the nurses had tried the cold cap themselves, so they would know exactly how it feels to discuss with patients and she said thet half couldn't stand it, but other half were fine. So still going to try. Took a selfie this morning after washing hair, thinking well this is the last time it will be like this for a while, as even if I don't lose it all, it's going to be greasy (as can only wash once a week), frizzy (as can't use straightners etc) & a lot of grey roots (as no dyeing)!! Kinda thinking maybe bald will be easier!!!!
Zena - I know what you mean about my nan and mum, but yes it is positive
Tessa - welcome x
Sarah - We have a caravan in North Wales near Pwllheli, not sure if anywhere near you?
Take care all,
I have been following this and the Jan starters for the last week as I wasn't sure which one would fit best with my chemo timing.
I am on 6 cycles of FEC-T like quite a few others, and had my first dose last Thursday. I certainly felt dosed up afterwards with the bag of pills, GCSF and mouthwashes! Side effects have been mixed - no nausea, but definitely some after effects from the Dex steroids and probably the single dose GCSF. Not quite sure what to expect as I go through this so just taking each day as it comes.
I live in Colchester and I haven't found any local support groups so hope I can get support through this forum.
Re: Facebook - Ann and I have already hooked up and I think it's a good idea but not to replace this forum as some people don't do facebook. So as long as we also post and support on here but also share stuff on Facebook too.
I wouldn't want to leave anyone out. maybe we can create a private group - how can we find each other though? I run a comminity page called Broseley Totally Locally and you should be able to find that easily. If you search for Julie Owen you will find a million!!!
Let's see if we can hook up - I'll create a page and see who joins up.
Yes, I echo that, great job Jules, Ironbridge... l love it there. Living in Rugby we visited on school trips once or twice and hubby and I go quite often. I'll look out for you next time I go when you are back at work 🙂 xx
Jules, glad you're not too bad. I can't believe your job! My dream job! You get to dress up & talk about history...Incredible. I'm originally from Leicester and had many happy school trips to Ironbridge! (And Alton Towers before it got massive!) I'm now living just outside Bournemouth in Dorset and am being treated at Bournemouth Hospital which is also where I work!
Zena how on earth do you post photos from your phone? I can see how from tablet but....Ugh.
Solo Jules in Shropshire, Ann in Cardiff, MrsO in Rugby (Family Sundays at Warwick castle!!! 😍)
Can I just say that any ladies out there who read the forum without contributing, please don't feel that you need to hide. Come join us, we support each other and someone somewhere will have some advice for you. Don't be alone or feel excluded. Maybe at 2am you'll be able to find someone with the same thoughts & fears. Or maybe you don't have a support network at home. Please come say hi and let us shoulder the burden.
Keep on keeping on!
Still feeling okay apart from a bit of an odd feeling. Appetite is low so just eating the smaller healthy meals my OH is making. We are both feeling a bit emotional today but trying to do small sorting jobs and listening to music together.
I'm originally from Port Talbot, then lived 7 years in Brighton and now been in Shropshire for 30 years. I actually work as a Victorian woman in Blists Hill - the open air museum at Ironbridge. I'm off work for the duration though as there are too many school visits and the general public. I'm being treated in Shrewsbury at The Lingden Davies Centre which is very new and the team are very good.
I see my oncologist on Thursday to see how how I've been after week 1. He was very abrupt last time and upset us (and the nurse) but I will be ready for that on Thursday.
I've been talking to Ann (Cardiff) on Facebook as she hasn't got internet but is able to use her phone. She's got her first chemo on Thursday so is one week behind me.
Lots of love to you all
Hello everyone, right I'm going to attempt all the names, Maria, Jojo, Jo, Zena, Sparky, Max, Ann, Taylor, Jules, Swampy and Sallyann... if I've missed anyone off then I'm really sorry, I'll try harder next time 🙂
Fab to see you are all being really strong and kickin' ass!
Best of luck to everyone starting chemo this week; Jojo, Max, Taylor and all,. you are all superheroes and you will get through this I promise and I never fib.
Lovely pic Zena - you sound so much better hun even if you're not really feeling it yet. Really good to hear that you are getting some sleep and hopefully in a day or two you will turn the corner and feel good again.
Maria, I hope your prechemo meeting goes well and they help to make you feel a bit calmer. I'll be a bag of nerves if and when it's my turn. No news as yet. Breast care nurse said to call her tomorrow if no letter from Oncology. It's been 19 days since they sent it to USA for oncotype test. I wonder if Sallyann has heard anything yet. I hope so. Hopefully not much longer.
Jules, you are so organised - lovin' the spreadsheets and the sea sounds. You sound just like me in that respect. I've got some whale music on at the min, birds will chirp in soon. Molly the cat looks round the room for them and makes me chuckle.
Ann, I hope your wig fitting went well? I keep admiring the Raquel Welsch range, though note to myself, I dont have a face like Raquel Welsch!!
In answer to someone's question, not sure if it was JoJo or Jules, I'm in Rugby, Warwickshire.
Anyway, it's nearly post time - I shall go and loiter by the door like a puppy dog and wait for postie to see if I've got a letter. Sad eh?!
Take care everyone, love Hxx
Zena, as far as the T goes, it seems some ladies are more affected than others, same for anything I suppose. I was previously on the September starters thread & some were reporting the "Tax Trots" but I went the other way! (May I recommend Aloe Vera juice! Can't abide senna)
So many different SE's for different regimes. I didn't have any nausea or sickness but to be fair I was proper dosed up. Steroids (Dex) the day before, during ,& 2 days after, Ondanstetron on the day & few days after & metoclopramide tablets to take if needed plus metoclopramide injections for district nurse to administer if necessary. I took metoclopramide for a few days as a preventative but it made me feel worse & never touched them again. Some ladies try travel bands to good effect so maybe something to consider?
Fyi...Docetaxel was originally made from yew tree needles. How amazing is that and how the heck did they discover that it killed cancer!
Will it ever stop raining? Will it ever not be January? So many questions...
Anyway, it seems that I have missed tons of posts so will catch up at some time! I had pre-chemo yesterday ready for FECkin Friday & learned even more! I mentioned to onc that I was worried about being sick & she told me that if I got through the Tax without nausea then I'll get through FEC no problem! However, she gave me lorazepam and another tablet like Emend to take on the day. Thumbs up! Soooo, 4 cycles of FEC starts Friday.
Hello & welcome to the new ladies, sorry to meet you if that makes sense! Please try not to worry about treatment too much. The oncology teams really are genuinely lovely people & all you have to do is say if you're nervous for them to talk through any fears or concerns.
I'm interested to know where everyone is from? I know Ann is in Wales now but where are you all from? It still puzzles me how treatment can be so different depending on which trust you are with.
Zena I'll also be posting a photo at some point. You can see my hair regrowth before it all falls out again after Friday! That & my 5 eyelashes... I think the visual effects of having cancer is a massive deal. I've only just plucked up the courage to go hatless in public (actually got less pity stares & felt curiously proud) but then the weather is a bit warmer! 2 weeks ago my eyebrows & eyelashes started to fal out, 8 weeks post last chemo! Final insult! However, they are already growing back so don't be too despondent girls. I'm going to lose them all again with fec but I know it won't be long before they come back. And I must say that for all the trauma, and it was a trauma, of losing your hair, it is LIBERATING to not have to faff with it in the morning!
Waffling again, let me know if anyone is non the TC regime ( Docetaxel/Cyclophosphamide) I may be able to give heads up with dealing with SE's. Forgot to say have you all been told to paint your nails dark? I also took the Boots Hair,Skin,Nails capsules throughout & so far haven't lost any nails although some are ridged.
Heal well ladies, speak soon
Still feeling okay but have a slight odd feeling today which I can't explain. Just a bit wobbly, I suppose. I also have indigestion all the time and going through Rennies like sweets!
Still keeping my charts going so feel in control and getting better at the steroid injections.
Just had a weight watchers chicken soup for lunch which was just enough and good for my soul. Spent most of the morning laying on the sofa listening to a CD of sea sounds and it helped.
Hope you are all okay today.
Just thought I would pluck up the courage to join this thread, after reading it for a few days! I think this forum is a great thing (if you can say that during all this?!), as you all going through it at the same time.
I'm due to start my chemo (EC for 3 sessions & Doc for 3 sessions) on 2nd Feb. I was diagnosed Nov 23rd & had lumpectomy, breast reduction & sentinel nodes removed on 13th Dec. Thankfully my nodes were all clear and they got a clear margin. My mother & grandmother both had breast cancer (my mother at 42 and is now 68 and my grandmother at 50 & she survived another 30 years), so I have had yearly mammograms from age 35 (now 49). I have even been on a Tamoxifen trial for the last 5 years, hence the chemo as Tamoxifen didn't stop the cancer coming (difference of opinions on this!!) and so the docs feel as a precaution I should have it. Tomorrow I go for blood test to do the gene testing & this will then dictate what op I go for next after chemo.
I am absolutely dreading the chemo!! I just dread how I am going to feel. Everyone's journey is different I know & some seem to suffer more than others. My best friend went through this in 2014 and I went on many appointments with her, so it all does seem like deja-vue!! She coped remarkably well through it all, but I feel the pressure to be like her....silly I know!! I have coped well through diagnosis and the op & recovery and feel I'm back to normal now. But then I feel the chemo is going to change everything and I'm never going to be the same person again...did anyone else feel like this? I've just noticed over the last 2 days how emotional I'm feeling about starting. Not the actual day itself, as having been with my friend, I know what to expect and so it's not as daunting, but it's more the SE's. I feel it's going to be 15 weeks of hell!! I have a daughter (11) & son (15) and I just want things to seem as normal as possible for them & they not suffer as a result. The main thing I get emotional about is not getting to my daughter's last things at school in the next 5 months, as she nears the end of her time in juniors. I also need to do school runs and work, so not sure how I'm going to feel for these and get stressed about this. I have my OH, parents and excellent close friends, who all offer to help, but I feel bad having to depend on others too often!
My big 50 is in May and we had plans to do all sorts this year, but now feel it's all on hold (all being well, my last session would be 18th May, 5 days before my big day!)
I have picked up so many tips from this forum though, as was surprised how little the hospital gave me. I am going to try the cold cap. I have very thick hair and so maybe it may just thin..... I'll try anyway. I made a big list of all different things to get! Are there any tips though on keeping as healthy as poss or for getting prepared for starting chemo ie any vitamins or anything? And how soon do SE's kick in and then last? My friend's seemed to start after 48 hours and by the 2nd & 3rd week she'd feel ok again. I go for bloods on Weds, the day before treatment & see the doc to sign forms etc, will I be given more info then (like the temp thing, do I need to check this daily & what I do if up)?
Sorry for the lenghty post!! And for feeling sorry for myself!
Take care all.
Sorry to hear that you are feeling so dreadful. Do you have alternative medication such as Ondansetron and Metaclopromide to take in addition to the Emend? If not - get on to your chemo unit or GP soon for a prescription. Thee is no need to feel nauseous - it's just a matter of finding what works for you.
Coming from the October starters we all know how awful it can feel. The anti-histamine is usually taken with the gcsf injections to help with the pain that seem to arise with these injections - assuming you are having them that is.
Keep a diary of all the side effects and symptoms that you are having - so you can let your onco guy know if needs be and also so that when you begin to pick up and feel better on subsequent chemos that there is light at the end of the tunnel.
Thought id post a pic of me , no one else has to of course but i thought you may like to see my little face lol xx
this in me just after the 3 big pink tubes have gone in xx