Fun wigs! Yay! There at least 10 on here that I’d happily go out in!
Elkie - how fab - I want the blue Marge Simpson one, x
Hi girls,
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.
Keep on keeping on Crackers, xxx
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.
Cathie xx
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.
Cathie xx
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.
E xx
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
Horrible, horrible.
it’s all in the blog:
‘I fought the FEC , and the FEC won. Almost’ :
today’s post on chemonights.blogspot.co.uk/
hi to one and all ,
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 
lolly
x
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.
Pat x
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!!!
Regards
Caroline60
‘How to build a very large and perfectly rhomboid chimney’:
Today’s post on chemonights.blogspot.co.uk/
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
Cathie xx
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
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…
Oh. God.
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.
I wish I could go swimming, I really do.
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
Thanks, Cress, that exactly was what I needed to know xxx
Yes, I had the flu jab, before starting chemo, so I should be fine. Probably won’t catch the bug, anyway. Just it’s been a very bad morning, and my brain is mush, and I was feeling panicky.
Just keep taking your temperature, and if it goes too high then the hospital will sort it out. Even if I do get it, it won’t necessarily be a crisis.
This is new Chemo Demon - the Panic Demon - sends all rational thought processes out of your head.
CALM DOWN, Caroline. Take deep breaths. Nothing bad is going to happen in the immediate future.
We are going to have such a good party in the summer, aren’t we, when we’re all done with chemo and can have a drink, and look back and laugh about how freaked out we all got about EVERYTHING?
Holding on to that thought.
Well it’s day 4 after TC and my sinuses are burning, my mouth feels very strange and still have a twitchy left eye, but the worse thing is this fog which is in my head making me not able to function and the fatigue, does anyone know when this lifts as no way can I look after my son like this , also i have a furry mouth , is that the dreaded thrush rising it’s ugly head
cybele, hope you don’t catch the lerg, it’s such a worry isn’t it , it’s going to make you over paranoid now , I’m sure you will be fine and like you say you wasn’t in contact on your low immunity days xxx
cathie, glad you had a better day and your daughter had chance to have a good talk , I think it’s going to be a big roller coaster ride as I’ve had a urge to lay in bed all day with my head in my pillow xxx
Lisalouw
I am day 7 TC felt better day 6 day 5 was my really bad day. I have got furry mouth but been given meds to take today for thrush and also antibiotics both as a precaution. It’s really strange what his poison does too you not sure if every chemo the going to be roughly the same or if it will get worse. How many have you to have have?
Cybele really feel for you I was like that with my last chemo which was AC but it did get better each session think our bodies sometimes accept it after the initial shock.
Cathie my daughters were 16 & 18 when I had BC first time. They both dealt with it very differently. 18 years old took me to all my chemo and sat munching crisps and chiocolate all the time and the 16 year old either went to her bedroom or went to friends they both dealt with it so differently but we all came through it coping in our own way. Try to stop worrying about everybody else they will be ok
love to everyone
Wendy
THanks, Wendy, Lisalouw xxx
Today has been supremely vile - is it always day 5 that is the worst? I have the impression that there are a lot of bad day 5s going on, whichever chemo regimen people are on.
However, after a lot of wild weeping earlier, managed to pull myself together enough to go out and walk for a couple of miles, which has made me feel so much better - fresh air and exercise really do help. Nausea a bit better now, but I feel so toxic inside - and all day my arms and legs have felt as if they being inflated, as if someone was blowing me up into a Michelin man, which was very bizarre. I have spent all day checking my extremities to make sure they are not swelling up, and each time they look perfectly normal. But I feel inside I feel as if they have swollen up to elephantine proportions.
Ok, now for the good news, Cold-Cappers!
Earlier I finally took off the s***ing snood and washed my hair for the first time since FEC 2. I left it so long because I was afraid it would start falling out if I did anything to it, therfore if I just left it in the snood, nothing bad could happen.
Anyway, I washed my hair, combed it very gingerly, and - well, nothing. It’s lovely and shiny after having had the conditioner on it since Wednesday, and a little hair came out on the comb, but as it’s effectively been wrapped up for 4 days, that is no more more than you would expect.
So, I am on day 26 of chemo, day 5 of FEC 2, and as yet no apparent hair-loss! Which means that the Cold Cap must at least be delaying the hair loss, because I think Maire’s and someone else’s started going before FEC 2.
Or maybe my hair just likes poison…
Anyway, we’ll see how it gosS - probably unwise even to mention it , as that will probably mean my hair will start falling out tonight, but I think it’s worth noting. Important to remember to accentuate what little positive there is in this nightmare.
I can’t believe it’s already day 26 of chemo. What’s really freaking me out though, having felt so truly bad for the last few days, is thinking about how everyone says FEC3 is the worst.
So I AM NOW GOING TO STOP THINKING ABOUT THAT AND WRITE MY BLOG POST.