Fiona508 sorry to hear you ended up in hospital and you’re also grieving an important friendship. It seems strange that K would risk losing a friend who is very much live and kicking because she fears…losing them. The fact she is like this must be making you feel even more negative about your diagnosis. Most people do survive triple negative breast cancer. I think her2 (which I have) has a similar-ish stat but the probabilities really are a nonsense because they apply to populations not individuals. Each individual either has 100 percent chance of surviving or not, it’s just the variables are too complicated and unknown. There’s also a not insignificant chance of dying from something completely unrelated whether or not you have cancer. But we’re not dead yet. And we’re also not even that ill (other than temporary side effects). So why waste the good quality life worrying about an eventuality that no one can know? Or throwing away perfectly good friendships? Really hope the counselling pays off for your friend for both your sakes.
Thrush is a nasty thing. Often missing skin is a sign it’s there because it leaves lesions. I’ve got a really sore throat at the moment which is making it painful to swallow but for some reason I’m also hungry for the first time in ages so I’m still eating - even though it feels like swallowing broken glass. Having a spoon of manuka honey seems to help it. Also having troubles the other end - the fissure I had following constipation last round seems to have come back again. Now furiously guzzling laxatives in the hope I won’t have to go back to the hospital. Apart from these annoying and somewhat excruciating difficulties with getting food in and out I’m doing well.
Also feeling grumpy at my hospital. Called them every day last week to find out when my portacath might be fitted but they haven’t returned my messages. Rubbish. Grrrrr.
Hi girls
Fiona so sorry to hear you ended up in hospital. Losing the skin in your mouth sounds really painful. I hope you’re on the road to recovery now.
I’ve found that my mouth is much more painful in the last few days and I’ve also got a sore throat - although I’m not sure whether those symptoms are related - can a sore throat be sympotmatic of oral thrush?? Will keep an eye on my temperature after reading your experience Fiona.
I was wondering how cautious everyone is being re picking up infections? Are you avoiding busy places? I’ve found I keep having to cancel visits to or from friends or family because they have a cold or their kids have an ear infection or their husband has tonsilitis…it’s really frustrating because catching up with people helps keep me going - and tops up my cake supply 
and given the time of year I feel like I’m going to end up never seeing most of my pals as there’s always so many germs flying about especially as most people have kids. Maybe am being too paranoid about catching germs but at the same time I don’t want to come down with something and risk delaying my next chemo session.
Keyfeatures good luck with sorting out your constipation troubles - a local women I know who has BC recommended Fybogel as a natural way of helping with constipation so perhaps you could try that instead of or on top of the meds given to you by your hospital??
sx
KF thank you. I know. But there wouldn’t be a job called “counsellor” if we could make sense of our lives like your lovely post sets it out. So thank you. I don’t hate her, I’m not even angry because I know the backstory.
OTOH someone who I used to know heard on the grapevine, took me out to dinner, (and pretended she was going to the loo so she could take care of the bill grrr) She said call me any time - I’ll come visit. Tell Caro, (my partner) to call me if she wants to talk about being a carer. I believe her because she knows the score and wouldn’t make an offer she didn’t mean, so not everyone wants to run away.
Yup, thrush is nasty. I’ll try the manuka honey trick. I’ve been prescribed some soothing mouthwash which i swish around my mouth and then swallow super slowly so it coats my throat. It is disgusting - so much so that as I’m typing this sentence I am feeling nauseous. The idea is to use it an hour before eating. But when I do, it puts me off my food so much that I might as well not have bothered.
Are you eating soft food? On the ward, there was a big choice and all the soft ones were marked. I asked for a glass of milk as well and poured half of it onto the plate which cooled it down and I smashed it all together into a soft puree.
I had bought a lot of strawberries the day before I went into hospital. Amazingly they were still all OK. So I pureed them in the liquidiser and now I’m home, I’m just eating Greek yogurt with the strawberry sauce. I have to take my antibiotics with food 4 x a day - so I’m eating a lot of yogurt. It’s easier to swallow if it is super cool, so I put it in this nifty little drawer my fridge has called the ZeroZone which is kept at just above zero degrees.
Once the antibiotics are done I still have another week of anti fungal medicine to take which doesn’t make me confident that they expect this to clear up soon. I might try fasting if I can’t swallow solids anyway.
Sorry to hear about the problems down below. I’ve suffered that way all my life so I use dulcoease (sodium docusate) - it works to keep everything moist, it stops the water being reabsorbed by your bowel when the poop sits around. So if I don’t go any day, I know it will happen when it happens.
Are you calling your breast cancer nurse about your portacath- that’s what she is there fo,. and if it is her not answering your calls you need to ask for a change to a different nurse. Mine has been amazing. She keeps a list of everything I have to do or have done to me and she chases up when it is not happening.
Thanks for the useful info InShock and Fiona508. Will definitely bear your recommendations in mind. InShock, sore throat isn’t necessarily thrush it may well also be mucositis which I think most chemo patients get because the fast dividing cells that line the gut have been killed off. And then you can also have a lovely combination of both!
Fiona508 I too have also had lovely surprise contact from people I used to know, or know only vaguely, with offers of help. It’s good to hear your partner is getting support as well. It’s a tough time for them too.
re: the portacath, I’ve been calling the head chemo nurse because I was told to do this. Managed to get hold of her on her mobile and she was driving and said she’d call me back. That was Monday and she hasn’t returned my messages since. Perhaps I’ll try my BC nurse too. Haven’t spoken to her since July.
Hi Ladies
I’m from the August thread. Hope you don’t mind me ‘popping’ in?
I had my first of 6 FEC chemo mid August but reacted badly. Couldn’t stop vomiting… Very 10 mins for 18 hours. Not nice.
As I was already on Emend and 3 other anti sickness meds, my onc decided to change me to TC or the next 5 cycles. Its a combination of Taxatore (docetaxel) and Cyclophosphomide. I’ve only found 1 other person on it, but am told that it’s ‘standard’ in USA and Canada.
I’ve just had my second TC cocktail, so am halfway through chemo!!!
For those of you moving onto Taxatore, I have found the side effects quite different to FEC. I don’t feel very nauseous and the main side effects take a few days to kick in. i think my taste buds suffer more and my mouth is really dry… In fact my is body is dry… I’ve never used so much moisturiser and hand cream!! The worst side effect is aching, but its manageable.
For me taxatore is easier than FEC, by a long way:-)
June22 mentioned the FB group you’ve set up. I’ve asked to join so I hope you’ll let me in ! blonde hair (pre chemo picture!) and a green top:-)
s xxx
Hi Fiona508, Inshock and keyfeatures. Wow so much to deal with. But you are all still getting on with it despite all these hurdles and side-effects and I’m giving you all a virtual hug for your amazing bravery.
Morning ladies. Sorry to hear some of you are having problems with oral thrush. Don’t know if this helps, but the nurse who came to flush my PICC line told me it might be worth trying manuca honey if I developed thrush (which I haven’t. I just seem to lose skin from the roof of my mouth), and that the GP practice could get hold of medical grade stuff. One of the other nurses said you take some just before the chemo, and another dose just after.
Thanks sdfmeg. Had some extra manuka honey yesterday (the 25+ strength that costs an arm and a leg). Throat is MUCH better today. May just be coincidence but I’ll certainly try more honey in the future. I’ve been using some special mouthwash from the hospital that’s no doubt helped too. Still pretty tired today but not in a bad way - sometimes it’s actually quite enjoyable to lounge around. Also, I managed to pen a poem - my first in weeks - it probably needs a bit of rewriting but it felt good to have my thoughts working creatively with words. A significant part of my job involves writing and editing scripts - so it’s a relief to know I haven’t lost the power of language!
Hi Annie1603. Sorry I didn’t respond to your post earlier- had 2nd FEC last thursday and still feeling a bit rough (no real s/es apart from feeling very strange and mentally foggy)!
Thanks for the tip re: coldcap. I also lost the most hair after washing it and it getting matted (I didn’t think to comb it through first!).
Thanks Luvvie for the info re: Tax-I have one more FEC then onto Tax so any info/tips gratefully received.
Hi sukeim - sorry to hear you are feeling rough. I’m glad they managed to get your second one done at last. I’ve heard from the hospital that due to staff availability they won’t be able to fit my portacath until after my next one so am really hoping my veins will manage it. Think I might take a hot water bottle wrapped in a towel on my way to the hospital so I can keep the area warm as that seems to help.
Hi everyone, back after a lovely weekend away, making the most of the end of week 3, just catching up on your posts. Sorry to hear some of you are having problems. My mouth has been a little bit sore this week, a few ulcers, sore tongue and my gums have been bleeding a bit but not too bad.
Had my blood test yesterday and I’m having my second FEC this afternoon at 2pm, feeling a little apprehensive but not quite as nervous as I was first time round! Saw the Onc yesterday and he has prescribed me tablets for heartburn he said all the other symptoms seemed manageable at the moment so we should just see how it goes this cycle, I’m happy with that as he must think they are moderate which is ok with me.
Good luck ladies and it’s certainly a nice day today, in Hertfordshire anyway, I shall be off out with my lovely dog shortly to enjoy some Autumn sunshine, incidentally he is 8 today.
Thanks keyfeatures-sorry about the delays for you. The nurse who did my PICC line said the waiting list for a portacath is a few months in my hospital too. Good idea about the hot water bottle-some chemo suites such as the Marsden have heating appliances specifically for this.
Was hoping to be back at work today but still feeling yuck-this time I’ve had v few ‘physical’ s/e’s apart from feeling shattered and ‘other worldly’ (if that makes sense to anyone!) but finding this more debilitating. Good luck with No2 Niknak
Hi sukiem and thankyou, sorry you are feeling rough this time, fingers crossed that things will pick up shortly x
Hi sukiem, yes they have the special heat pad at my hospital. It’s a bit like an electric blanket that they wrap round your arm. It helps a lot. I too have had far fewer side effects this time, especially with the acid and sickness, but have felt like I have a lot less energy and that is lasting into my second week now.
I’m probably being silly because I know they often have to delay chemo but I really have my heart set on my last one being the 20th December. It would be great to go into Christmas and New Year knowing that I’ve finished chemo. Guess I’ll just have to wait and see.
I definitely have my place on the Brighton forum so if you end up going let me know and we can see each other in the flesh.
All the best to everyone,
Nicola x
Thanks Nicola-I think the fatigue can be cumulative and thats certainly whats floored me this time. I don’t know about everyone else but I find it frustrating as I’m such a whirl wind usually. Theres only so much day time TV I can take!!
I completely understand about getting the chemo over before xmas, that would be a real boost-unfortunately due to my cannula nightmare my last one is now on 27th Dec! I’ve heard most chemo’s are postponed due to blood results so hopefully the white blood cell boosting injections should do the trick for you.
I was all set for sending off my app for Younger Womens Forum but then realised its the day after chemo (1st Tax). I still might throw caution to the wind and go for it. I’ll let you know x
p.s hope it went ok today niknak
Hi all September ladies
new to this thread… HER2 and ER+ve, WLE and SLNB end of August and started EC chemo on 17thSeptember. Just had 2nd cycle yesterday. Tired today and bit sicky but expecting worse to come (worst days last time were day 3-5 nausea and 6-8 heartburn - apple cider vinegar amazing treatment!)
hair has thinned dramatically despite cold cap but will persevere for at least a third time as nurse encouraged me yesterday that it could have all fallen out by now… Just want to keep my hair as I dont want to look ill because with my tumour removed and no spread I feel cancer free with chemo and subsequent treatment herceptin radiotherapy and tamoxifen purely preventative.
cancer Changes your life big time and those nearest and dearest too. I’m a bit of a busy bee normally working ft. It’s been a big shock to us all plus we had to cancel a family holiday to Florida and I find it difficult to get my head into gear to organise things that I wouldn’t normally have a problem with (chemo brain) I feel bad for my nine year old daughter who shouldn’t have to experience this… Anyway pityfest over with I am actually positive for the future but hate life been put on hold…
love hearing everyones comments though as so many ring true!! It’s a great support xx
Thanks sukiem, yes all went well today apart from the treatment room running an hour and a half late, we left at 1pm and got home just after 6pm.
My last FEC is due on New Year’s Day, they said it will be the day before or the day after.
Have a good evening everyone and sweet dreams tonight.
Hi Vicky-p and welcome to the September thread. I think I’m different to you with the hair thing because for me, having thin hair or bald patches has bigger connotations of ‘ill’ person than bald head. I hope the cold cap works for you, especially as it sounds quite uncomfortable. I’m having herceptin too and like you my treatment is preventative. Did you get a portacath put in yet?
Anyone know what is supposed to happen to your periods on chemo? I thought they stopped, but I seem to have got mine over a week later than it was due.
Hi keyfeatures thanks for the welcome. I’m not due herceptin for a few weeks…no portacath is this normal practice? Not sure what to expect with herceptin…but was just reading today about the many SEs from tamoxifen 
the cold cap isn’t that bad actually! Felt cold throughout my body first time so went with north face jkt and extra pair of socks this time! Lol much better.
Yes my oncologist told me periods may stop as one of the SEs but unfortunately got mine as usual right on my birthday day!! Was balding and forty with a tremendous period to boot! Just lucky I guess!!
xx