Cybele - I managed to catch hubby's lurgy but I survived. I tell you this cos I always thought that if I caught a bug it would inevitably kill me but it turned out that I just had a cold and they delayed my chemo. You may not feel reassured but I just wanted to let you know it is possible to just have a bug whilst on chemo without it beng the end of the world. Did you have a flu jab? I am not sure if I am helping so I will shut up. Wash hands and monitor temp if you feel rough, sending healthy vibes, xxx
And in breaking news, my OH's ex has just rung to say that his 6 year old son, who was round here yesterday, and whom I warmly embraced ( he is a lovely little boy) has woken up this morning with a 38.5 deg temperature, and what looks like flu..
I know you can't isolate yourself from all sources of infection, and it seemed to me that it was inevitable that one would pick some bug or other during the course of the chemo, but now I feel a bit frightened.
Oh well, at least it's only day 5, so I was exposed to him on say 4, and the immune system low point is day 7, right?
But of course R sees him every day - well, LOTS of handwashing when he comes back. And luckily, R has a very strong immune system, and doesn't catch much, so hopefully he won't actually get it himself.
Just actually been woken up by the nausea for the first time, at 7am, so I 've very rapidly swallowed my meds, eaten a couple of mouthfuls, and am sitting here drinking Diet Coke and praying that I'm going to be able to keep it all down, which is looking a bit marginal at the moment.
This is day 5 of FEC2. I had IV Fosapprepitant (=Emend), and am taking Ondansetron, Dom Peridone and Cyclizine, and I'm still as sick as a dog.
Oh, I hate this.
Hope you're all doing better than me, my Sisters in Chemo xxx
Lisalouw tHANKYOU. Daughter had long chat, looked exhausted when she came home but we have had slightly better day so it really is little steps. So frustrating for my hubby who has worked stupid hours on his shift this week.He is a chauffeur and works shifts, six days on and then three off so for example he was up at 5am yesterday's home by 10.30 pm and today out by 9 am and should be home by midnight so I worry for him too. His colleagues and bosses are being very supportive which is great. He starts his three days off tomorrow so will be with me for oncology and bloods visit on tuesdayand all being well with that my daughter will take me for second FEC on Thursday so that will be tough for her too she has taken me for my picc line flushes so she has seen what's what on the ward. But less tears today we both cried when I told her more hair on my pillow so I made the decision to wear something on my head now . So I put sparkly scarf on and we went out together and got our greedy Labradors food so another step. I am with you on the ability to think I can't even make simple decision, weird.
Lolly123so glad you are having a better day.
Cybele, well done you you brave lady you are indeed a winner.
Cressida,I read the link you sent thankyou, mixed emotions but interesting. Hope you are ok.
My love to you all
Hi Cybele, I am going to use snoods as my headwear as I have tried the chemo headwear and they all screamed cancer. I also have a small head and face and my head paled into the background when i had the scarves, turbans and hats on my head. I went into a spots wear shop an outdoor supplier and a ski shop - bought tight fitting snoods for about £4 each - which I will be wearing on my head with accessories - scarves on top of scarves is not for me!!!
hi lolly 123 i had 1st fec yesterday was nausious within a couple of hours i couldn't even take my tablets .Managed to get some sleep even though my head , cheekbones and teeth where killing me. Felt much better this morning and managed to get the ppills with some toast down . Have felt ok today but like you only given short supply of sickness tabs.Chemo brain set in straigjt away and very dizzy . Good luck the nausea is awful.
i am on day 5 FEC 1 i am haveing the best day so far, not feeling queasy anymore, but i now have a back ache, but putting that down to sitting around too much, i finish my Anti Sickiness tables today, so tomorrow i will just have to see how i feel, i dont seem to have as much side effects as others here, and the one i have wasnt pleasent, so feel for you all that has had a rough ride.
just have to say i love your Blog Cybele, wait every day for the next story well done.
speak to you all soon, take good care, big hugs to you all
Elkie Ha ha I'm loving the party wigs, I could def see myself in the purple babe xxx
Cressida , thanks for the info I'll ask the nurse to explain it to me next time I go , I looked on the paxman website and I'm not sure either as it says for tax 45 mins after infusion and C 1 to 2 hrs but yep maybe your right that it goes on the dosage , and you havnt scared me , think it's the unknow isn't it so ill take 1 day at a time , the infection risk does scare me , but I can't hide away , I'm sure I'll get better as time goes on with it all xxx
isn't it rediculas that your supposed to stay positive , how the hell are you to do that , tiny baby steps , tortoise and the hair , take it slow one step at a time , it's not normal to not have meltdowns , and I'm sure anyone saying stay positive and they had been delbt this shitty hand would not be positive all the time either
cathie, glad you had a good cry it does you a world of good sometimes, and maybe your daughter will feel better after a good talk to her friend and then in return you won't be worrying about how her , the breast care nurses are a pain to get hold off arnt they, it's always leave a message and we will get back to you , also I'm not very good in asking for help with is a major downfall , I hope you get some sleep tonight , thinking of you xxx
sorry if my spelling is dire, I seem to have twitchy eyes and the inability to think since my chemo yest , very strange xxxc
That Barbara Ehrenreich article is very interesting. It's true that, while stress may make us ill, there's no evidence that positivity can cure cancer, and we have no obligation to be feel positive as part of our treatment. It's up to the health service to make us better, and we don't need to feel guilty, or feel like we're making ourselves more ill, if we have off days. Of course, if we can feel at least reasonably happy and able to get on with our lives in the meantime then all the better. But we certainly can't smile ourselves well again, and we shouldn't feel that we've failed if our 'positivity' doesn't somehow zap our tumours.
I keep having people tell me that I'm sure to get better, because I'm being so positive. It's kind of then, but it's actually nonsense because: a) I'm not positive all the time, I'm just being myself dealing with something really sh*t - I'm generally quite positive, and that's the face I show to most people, but I'm certainly far from delighted to be in this positions. And b) my positivity or lack thereof will have negligable, if any, impact on my cancer. My willingness to cooperate with the medical team, and their skill in dealing with it, will be what has an impact.
That said, I'm glad to be having quite a few happy times in spite of everything. And I hope all the rest of you do to. In a way the huge benefit of a forum like this is to be able to moan to the other afflicted, so we can get on with the rest of our lives to the best of our abilities.
Cressida, have now just seen your wonderful response too so thank you, I will certainly take a look at the link. And I will keep in touch with you all. Yes you saw right through me was being very rough on myself! I think you are all amazing and we can all get through this so Thankyou all for helping me.
Lisalouw, thank you for understanding. My daughter has now reached out to a friend of mine who is skilled in the art of counselling and she has gone to see her this evening . And no I did not want to bother anyone bit did try BC nurse who was not available and then my own GP who was not in today, so I had another massive cry, two paracetamol , made a hot water bottle and curled up on settee. Also does not help that I am an Office Manager in a large primary school and so upset I wont be there for the start of 2013. Have worked there for over twenty years and miss it
Caroline60 I had three days of steroids on first FEC and was told this would be the same for first three FEC and then the Dose would be increased for the 3 x T so certainly worth checking.
Maire, thankyou. I did feel very alone today but I can see from responses I am not. We have all had a rotten roll of dice and it is learning now to deal with it and all that goes with it because you are right it is so overwhelming g so much of the time. I went with the paracetamol (as tempting as diazepam was thought would need these more next week prior to second FEC), then had another sob and again you are right it is better to go with it go with it and weep when needed. I then got under my safe blanket with a hot water bottle and rested. I have worn my hoody today and had hood up most of day, tried my wig on this morning and now not sure about it so will try it on on again on a better day.
THANKYOU and love to you all.
Sorry, Maire and Mandyp - turned out not much energy for naughtiness but did have 2.5 hour "lunch" in pub with friend who should have been working so she was the naughty one and I just encouraged her.
Also sorry, if I scared you Lisalouw - you are having different chemo so we will not be exactly the same. I never felt rough immediately after FEC or T, it came on later. With Carboplatin it comes on within hours. All different.... Re: Cold Cap - I think I kept mine on for about an hour but I tried to find out if there was a definitive amount of time and there does not seem to be, so maybe it depends on the dose of chemo? Ask the nurse to explain it to you. Once you know the right amount of time - time it yourself - thats what I did - and don't let them rush it - they can wait.
Caroline60 - I had steriods with FEC and T and I get them with Carboplatin too, but, like the cold cap, maybe it depends on the dose of chemo. Everyone has a calculated dose according to body mass, but also according to the type of cancer and what your Onc thinks your body can take. I don't have steriods with my dose of Gemcitabine. Once again, get them to explain it to you. If you don't need them for some reason then - fab. You can sleep! I was anxious when they didn't give them for Gem but relieved when I understood I didn't need them.
Cathie - wondered where you had got to. Sorry you're feeling a bit rubbish. I hope you are not beating yourself with a stick for not being brave or positive enough. Here's a link for Barbara Ehrenreich, a geneticist who had breast cancer, explaining that positivity does not fix cancer, but the culture that we should be positive makes us feel worse if we can't do it all the time.
What we need is a way to cope - you might want to wear a clown wig (love it, Maire) or you might want to have a good cry. But bottling it up, putting on a brave face and pretending you're fine will drive you bonkers. You are still a wife and mother - but let people help you. YOU CAN DO THIS. If you let people help. Keep popping in to tell us how you are.
Oh and another wee thing: I bumped into a friend in Tesco yesterday-she had chemo a few year back, used the cold cap and didn't lose all her hair but had some bald bits. She said her son (then a teenager) got upset seeing her bald bits so she used to wear a clown wig about the house in the mornings so as not to distress him. I just loved this. Think we should all have at least one clown wig around the house as an alternative to our usual head gear!
She is some lady, by the way, and has a lovely thick head of hair now!
I got steroids with fec, Caroline-just a few days dose. Why don't you phone them back to query. Cathie-I just typed you a big long post and lost it. I too have just had a major weep so please don't feel alone. I actually feel better for letting it all out because it can be overwhelming. You seem a decent person who's had a rotten roll of the dice but you are getting on with it. How many people genuinely refuse to go through the chemo bit? Lots of people must refuse, or give up somewhere down the line. Right now, I honestly don't know how I'll ever let them put anything else into my Veins. EVER! And don't feel bad about being 'negative'. We've got to be allowed that sometimes, right?
After my own meltdown I had a couple of paracetamols and a mug of soup and I felt better-not sure if it was the soup or the sob or both!
Hi ladies, I am having chemo on the 15th of January (was previously delayed as should have been in December) but the nurse told me I would not be having steriods with the FEC but would have them with the t. Can anyone clarify if this is right? Im sure ythis is not right.
Cathie, so sorry to hear your having a bad time , i have off days too where I have a sob , and I think the hair debacle is the worst thing to get over with , ive got that to come , even though i did try the cold cap but im not holding out much hope , it is easy to focus on the negative , I like to stick my head in the sand a little and not think about it or read anything about this dirty little parasite we all have , and you don't have to brave , I'm certainly not, my son is only 3 so he doesn't understand , I'm worse when I'm home as I'm on my own alot , I'm at my mums at mo, has your daughter got anyone she can talk to if she's not handling things very well, hope tomorrow is a better day , have you spoke to your breast ca nurse or you like me and don't like to bother anyone , lv to you xxxx
So sorry everyone have not posted anything lately. To be honest and I think I can here, I found myself just focussing on negative . I am due for second FEc next week and now getting worked up because on the whole first one was not as bad as I had thought. I thought i would get all side effects pretty quickly. Now my hair starting to fall out which is really upsetting and is also upsetting my 25 year old daughter who is really struggling emotionally. So I don't know what to say to you brave ladies. I dont feel brave, I feel fed up and frightened and want to just be a wife and mummy again. Now I'm crying again so signing off.
Cathie C xx
Day 8 after 2nd FEC and actually feel miles better. Felt really low this time..... physically and emotionally. But ok now! Back still a bit sore but GP gave me some mega knock out pills that relax muscles and nerves so have been resting at night.....
I seriously thought that I had been reduced to wearing leggings for ever!
....I cancelled my appointment with clinical physcologist today as couldnt really be bothered as am bored now......
....like the idea of causing nautiness Cressida! I really do....
Hope SE's not too bad for everyone.....What i found hard was rationalising that it was the chemo making me feel terrible and not the cancer.......
......and thank goodness we have some sunshine!!!
Lots of love and keep well.....
good morning fellow warriors , day 2 of TC , been up on and off in night wanting a wee and my face is burning and red , not sure if that's the steroids though, other than that just very tired and have brain mush , one positive my 3 yr old slept though which is not very often , he keeps asking me if my boobies are better yet and he pretends to phone the doctor to ask him to make me better , such a sweetheart , bless him , hope everyone ok today
cressida, can't wait for day 5/6 , not , I think now I'm a little paranoid and I'll end up giving myself side effects which are in my head , thanks for the advice x
cybelle , keep meaning to read your blog, everyone says how good it is , now I'm at mums a few days I may get time to have a look, by the way how long did you have your cold cap on for after infusion , I know eveyones different and your on diff chemo to me , I'm having paranoid thoughts it wasnt on long enough after post infusion , and I know it's very vain but the hair thing is the thing that may send me into a sobbing wreck , so far I've been handling things pretty well considering
I should have had chemo yesterday but had to miss it due to failing blood test. Now feel like a naughty school girl playing truant. Luckily, I have an appointment with my lovely MacMillan therapist so we can discuss my guilt at avoiding the poison that I need.
Just had a read back and wanted to thank Maire for mentioning her period - if I can talk about my bowels you can def talk about your period. I think we should all own up to something embarrasing and get it over with. I had a couple of periods before they stopped and I have not seen them since. The last one can be a bit severe. Some people keep on having them. Once again, we are all different.
Cybele - the blog continues to be fab. Congrats on it being recognised by The Haven. Is it only for people in the area nearby or can people with cancer choose to travel to one from further away? We don't have one.
Lisalouw - I twitch when I am tired, stressed etc (so, most of the time, really). Side effects for me usually worst day 5/6.
What to do with my truant self? Hang about in the precinct? Shoplifting? Any ideas?
Maire, freezing cubes of blended pineapple is a totally genius idea, which I am about to go and do now, as my lovely BF got me a fresh pineapple from the market today. After a day of nommy-Nystan, the gob-fuzziness is already calming down a bit. Plus I'm not eating anything sugary, so as not to feed the fungus.
I also liked your description of fairy lights in the legs. That pretty much captures it.
Hi Marie , thanks for the tips , I feel a little heartburn now , I wasn't given anything for heartburn only anti sickness but I do have omaprazole 20 mg as I suffer indigestion anyway , I'm wondering whether to double the dose and take 2 tonight , all they gave me for my mouth is some antiseptic mouthwash , suppose I'll have to go to my gp if my mouth gets furry , I feel like could sleep for a wk so lets hope the frantic legs don't start as soon as I'm in bed , it's hard to rest for me as I've a 3 yr old boy and on my own most of time , I have moved in with my mum for a few days though just to see how I'm coping so I'll be able to have a lay down when I want , glad your feeling a little better , the twitchy eye still remains , very strange , watch me develop a nervous tic on top of everything else , one step closer to the straight jacket me thinks xxxx
Lisalou-don't think TC is as likely to give you any sickness. I had no nauseau at all with it though I did have nausea with FEC. Make sure you take all your pills esp the heartburn ones. I hope you get a deep sleep tonight as it makes all the difference. You might feel kind of achey esp. legs. Mines throbbed. Actually the closest I can get to describing my reaction occured to me as I was drifting off to sleep. My nerve endings were jangling and it felt like I had a set of randomly pulsing fairy lights inside my legs.
I found it difficult to relax sitting down so I either stood or lay down. Lying down relaxing always made me feel better and refreshed esp if I managed even just 10 mins of sleep. My granny always said " a sleep's as good as a feed".
Bear in mind I've only had one TC session 8 days ago so I'm no expert but at day 8 I feel considerably better. I am absolutely knackered but at least I feel like a knackered version of myself and not a demented alien being.
I've also just blended some pineapple and frozen it into cubes to give me something cool to suck on as my mouth feels horrible and ice really helps. (Not confirmed as thrush but I have medicine on stand by just in case)
Good luck Lisalou, that's one down. You can give yourself a big tick on your list (We all have one. Right?)
Oh and Cybele, have done a dance-with wig- to appease the nausea demon and keep him/her distracted from you!
Had my first TC today , had the cold cap which I didn't feel painful at all only cold for first 10 mins and then wears off, I don't think my nurse calculated the times right though I only had it on 30 mins after infusion and I've just read on website needed to be 1 to hours after infusion, so I'm not holding out much hope , fingers crossed anyway , I've also seen the wig woman and go next wk to try them on , I just feel shattered only had 3 hrs sleep last night , I don't feel sick yet , does the side effects kick in the day after , it's been a very stressful day but I'm glad I've got my first session over with , hope all you ladies are ok , I'll try and read all your posts later when I'm not as shattered , I've developed a nervous twitch in my eye , is that the first sign on madness arriving , love to all of you xxxxx
I have some nice news , about the blog - now up to about 500 hits a day, a lot of positive feedback, and just now the Haven emailed to ask if they could put a link to it on all their social media, because they like it so much, and think it will help other breast cancer sufferers, especially ones about to go undergo chemo who are as frightened as I was.
My answer was of course yes! yes! YES! This should really help with publicising, and also give a boost to the fundraising, so I am really, really happy.
In the last week since I started the fund-raising page, have raised 655 pounds (incl gift aid) for The Haven, with more promised, so am v. happy about that - the Haven has given me so much help, and it is great to be able to give something back.
And to get something positive from this whole cancer nightmare..
Talking of which FEC2 is very much making itself felt. Bleurghhhhhh. Keep thinking about week 3, when I will be feeling Ok, and we are (god willing) going to go to Yorkshire for the weekend to stay with my sister, which is always highly entertaining..
Love and hugs to you all, my Sisters in Chemo xxxxx
Here's one for the cold cappers - today, as my chemo was cancelled, I decided to go and get a haircut! I checked the calendar to see when I last had one - it was November. I have to ask the calendar as, thanks to Chemo Brian, my memory is now outsourced to the calendar and the mobile phone. If it is not on the calendar/phone it is not happening, or it might happen but I would not know. I thought I was going to more concise in my posts, but it seems not. Anyway, the point is, that 6 months on from FEC-T (with cold cap) I have so much hair that I need regular haircuts like a regular person. Woohoo.
Might be joining you with the old thrush. Mouth just feels horrible. Ice lollies do help though. Going to see nurse just in case though nothing def. yet.
Oh and period is mental! Typical-thought chemo was supposed to knock all that on the head.
Thanks Cressida, I did think maybe fresh pineapple would be the thing, because of the enzymes, but the district nurse seemed to think any old pineapple would do. I'll go on the hunt for a fresh one, as the pineapple juice just gave me terrible heartburn. The Nystan is very tasty though 🙂
Pat, good luck with starting. I was really scared the day before, but the actual experience wasn't scary. And it seems the side effects sort of sneak up on you a bit more slowly, so there's time to get to know them (I speak as a very experienced day-sixer).
hi you lovely December ladies, I've been following your posts for a while now getting lots of tips,do's and donts, what a lot of information I've gained from you all, so just want to say a big thank you and you have helped to prepare me for my 1st "dose" on Friday.Really scared no REALLY SCARED. Good luck all you December ladies I shall still visit you from my January jems home to collect more tips.
BIG thank you.
Thanks Em and Wendy for the advice on thrush. The doc gave me Nystan, and I've got myself some pinapple juice. I'll ask for the pills next time - it started pretty much on day 1, but is totally gross today. Hopefully it will clear quickly!
I've just got myself a giant tupperware box for all the meds, with a pretty sticker saying "Elee's Tub o' Drugs" on top. Have to entertain myself somehow.
Happy floating, Cybele! Hope your return to Earth isn't too rocky 🙂
Back home from FEC2 and feeling quite stoned, just like I did last time.
don't know why I was so freaked out about having the chemo yesterday, it was all perfectly pleasant, and the only instant effect is the wooziness and being Very Spaced Out again. Nausea should not be too bed till Day 3, as have had IV Fosapprepitant (Emend) and IV Ondywhatsit and the steroids, and have got the combo of Dom Peridone + Cyclizine to keep me going after all that wears off. It kept the nausea mostly under control, and bearable, once the Cyclizine w s added to my daily meds.
Wow, am feeling v.v. tired now - gotta go and lie down for a bit xxxxx
Elee try pineapple or even tinned pineapple it is supposed to be really good for thrush. Ask at next chemo they have given me pills to take on day 7 for thrush as a matter of course as Tax is noted for it . also carrying a 48mm lump around with me in the meantime . Have to have 4 Tax so scan after number 2 to check working hopefully kicking the bugger up the butt.
had number 1 on 31st so far so good bit achey today that's all
Hi Elee, just read your post about oral thrush - I had it bad too when I had my TAX back in August- doc prescribed Nyastin (sp?) which worked well. Good luck and remember this will all pass and you'll come out on the other side, Em X
Hi again all,
I hope you managed to have a half-decent new year. I had some friends to stay, which was nice. We celebrated new year with Helsinki (i.e. at 10pm) so I didn't have to stay up late!
I'm on day six since the chemo started (I've started with T, rather than FEC). The main HORRIBLE symptom I've ended up with is oral thrush. I feel dirty just thinking about it - ugh! I have a fuzzy mouth, a horrible taste, and it's spread down my throat too. I went and got some mouth rinse from the doc this morning, but I wondered if anyone else had had this? Does it clear up a bit, or can I look forward to for the forseeable? Also, is there any food advice? I've seen that sugar is a bad idea. The district nurse suggested pinapple juice might help, but that's obviously quite sugary.
Other than that, the lack of sleep is doing my head in a bit. I manage about five hours, then am awake for the rest of the night, and wrecked for the day. Going to try zopiclone from the doc.
There are so many posts from you all, that it's hard to respond to any particular one. And although we're in the same boat in some ways, we're in quite different boats in other ways. I, for example, only found out that I had cancer six weeks ago, and am carting my little lump around with me during my pre-surgery chemo, and hoping that it behaves itself and doesn't go spreading itself anywhere else in the meantime (it's already a bit in the nodes, but the CT scan says it isn't anywere else).
Anyway, even as a peripheral and late-joining member of the group, it's good to know we can compare notes and give each other long-distance, electronic support and hugs.
Michelle - what an uplifting post! thank you..... and thanks for telling me about the backache........i have been totally consumed with it rather than getting my self better!!!! this is such a scary disease that my mind has been pretty cruel....
big hugs. x