Hi, had my second FEC yesterday and as usual have a horrendous migraine and severe nausea. This time i was treated later in day so the effects have hit me now as i went to bed last night to sleep it off.
They said they had me on max dose available and have reduced it by 20% now due to the bad time i had last treatment with ulcers and blisters and skin reactions.
Any ideas to help me with particularly the first day effects i would be really grateful. Read stuff somewhere about ginger etc…
I found the best thing was to try to sleep through it if at all possible Get someone to watch the kids, go to bed with a bucket, glass of water, anti sickness meds and just try to rest.
Hope you feel beter soon. It will pass ebetually. And jst cos it has been bad on one cycle does not mean that they will all be the same, for some odd reason. So rest!!!.
Thanks Jane, sitting on sofa with cool pad on forehead, pumped full of the anti sick drugs and wrapped in blankets. I tried bed but Katie the little one kept crawling upstairs and climbing on top of me and kissing me. She was hysterical when her dad tried to remove her so in the end the only way to get her calm was to come down where she can see me bless.
Now got Toby sitting playing games on CBeebies on laptop. Feeling bit more human tho just not moving and keepin the lights out, drinking water and green tea. Its just horrendous. I promised to take Ben the big one to Edinburgh to pictures later and not sure gonna make it poor mite. He will be gutted cos he loves special time with mum.
If the sickness meds you’ve been given are not helping enough, you could ask for a different one called Prochlorperazine, also called Buccastem or Buccal (3mg tablets). You take it twice a day, placing it high up between your upper lip and upper gum, and it dissolves in the mouth in a few minutes. When I had chemo this was the only anti-sickness drug that really worked for me. Perhaps you want to ask your oncologist about it?
Also, drink lots and lots of bottled still water. It may seem daft to drink more if you are being regularly sick, but this will keep you from becoming dehydrated, which could ease the headaches. Also helps to keep your stomach from becoming overwhelmed with acid.
When you feel sick, try not to fight it, just go with it and tell yourself that everytime you are sick brings you closer to the sickness ending. Breathing excercises and meditation can help to keep you calm which will also help when nausea hits.
Ginger is a traditional remedy for upset stomach - you could try some ginger tea or ginger ale. Raw ginger might be too harsh to eat. Nairns makes a very tasty ginger/oat biscuit which could help too.
You might want to avoid very spicy foods like Indian or Mexican which could aggravate your poor stomach. I was also advised not to eat my favourite foods around the time of chemo, in case the nausea put me off these foods forever.
The chemo drugs kill off all types of ‘fast-dividing’ cells which include the cells that make up the lining of the stomach, which is why they cause sickness. But the body is astonishingly resilient, so it takes only about 4 or 5 days for your body to rebuild the stomach lining. So each time you have chemo, the sickness and nausea shouldn’t last longer than 4 or 5 days. That is something to hold on to.
Buckwheat thanks so much this is really helpful. I know the Nairns oatcakes you are talking about.x
I will def speak to my oncologist about the other anti sickness drugs, anything is worth a try. I have been drinking hot water and green tea and my head is already subsiding.
I will stock up on bottled water too. Anything is worth giving a go. Its so frustrating with 3 young kids relying on me. OH tries to help but doesnt have the patience or temparement to cope with them like i do. Makes it hard for me to sit back and let him get on with it.
I had to stop eating my fave Tesco Finest meal, chicken, chorizo and cheese bake cos the spices aggravated my tum so yes I have already had to make sacrifices on the food front. I will def keep doing that. Worst thing is the weight loss with these reactions and food just tastes of nothing just now. Its sods law, cant eat spicy and cant taste a thing. So cant spice food up.
But thanks again, thats been a really helpful reply xxxx
Is there anyone else that can help out with your kids? It can go against the grain to ask for help, but sometimes other people want to help and they just don’t know how to offer.
I don’t have kids, so the whole experience was much, much easier for me.
So sorry to hear you feel so rough. It must be doubly difficult with little ones.
Two quick suggestions…a FEC tip given to me by a friend, a former bc sufferer AND ex chemo nurse. Line your stomach with something rich in carbohystrate before, and as close to, your treatment as possible. Her suggestions were mashed potato or pasta, but I found what worked best for me in practical terms was a giant home made flapjack (with ginger in!) This helps to prevent the chemo drugs attacking the lining of the gut and making you throw up. It certainly worked for me - I would say the nausea reduced by about 60% when I started doing this and I never threw up again.
Secondly, I’ve heard that green tea is not always recommended during chemotherapy…perhaps it would be worth checking this out, as opinions do vary between oncs.
Finally, my first FEC was by far the worst - I do hope it proves to be the same for you.
Hi guys, thanks again for your replies. Buckwheat its proving really hard to get help. All my friends like me worked full time and are busy. Other friends who are older and offered seem to have disappeared off the radar. Its funny how you find out who is and isnt genuine.
One friend i have works in Victim support and is very into psychology etc and really uspet me the other day. First time i have met with her since finding out. I had a gut instinct to keep her at arms length cos despite her job i find her ignorant and not able to listen. She came in and gave me a hug and said how are you and i said honestly i am fine and she said 'yes your in denial and once you learn to come to terms with death then you can move on!!! well i nearly kicked her out but thought rise above it. When she left i swore to myself i wont bother with her again. she offers help with the kids but no damned way will i have my little ones anywhere near a person like that. I sometimes think people in these professions lose touch with reality and cant see past the simple facts.
Anyway i will lay off the green tea for sure. If you have heard that somewhere i am sure its for some reason.
And thanks Jane that tip is a def for next time. I will stuff my face prior and pray i cope better. I just dread that day now.xxxxx
Sorry if i sound a bit angry and down today but had a terrible weekend and a lot of stress emotionally so venting a bit x
Signet - is it worth speaking to the BCN? Or one of the charities that support people with kids when families are going through stressful times - I know of someone on the site ages ago who had a volunteer sit with her kids to give her a break, her BCN sorted it out for her. It is’t psychology you need right now it’s practical help - if your mates can’t see that then make them!!!
And honey, next time may well be different but honestly, if you can get someone to take them to the park or whatever and just try to sleep it off it can really help with the se’s.
Thanks Jane, i think i do need to mention it to my local macmillan service again. My health visitor was supposed to be looking into something for me that a nurse friend mentioned about carers who in situations like this can take the kids for a couple hours here and there in dire situations where i cant cope. She still hasnt come back and that was 4 weeks ago x
I feel bit frustrated cos i have had to do all the digging and researching for myself about help available etc since outset and even had to push to get referred to a local massage service who work with macmillan because my BCN kept forgetting it. I just feel i have so much else to do asides sort all this stuff out for myself too. I think i have been a bit unlucky in the experience i have had because others seem to have been referred and looked after well. Its possible cos i come across as a strong bubbly self assured type so they dont see me as needy enough to provide that same support. I need to start blubbering more and falling apart!!!
Still bit sick from the chemo Friday, got little gashes at end of each finger too where my skin splits for some reason but its manageable x
i will let you know how i get on Jane, x x thanks again
The skin splitting thing is horrible - never found anything that helped with that myself.
To be honest, i think you hit the nail on the head when you said that if you come across as strong and independent BCN’s tend to be at a loss.
BCNs, now i know that some of them are excellent but some are useless. I expect they go where it is easiest, people who actively ask for help. My experience is that they, and everyone else get fed up with you saying “I’m fine” and go where they know they will get appreciated! To be honest, i reckon you need to cry at diagnosis and be a complete wreck otherwise they forget you exist very quickly. I think they struggle to know what to do with younger women,and maybe it is too close to home for some of them - mine is supposedly a star with the old ladies but I have not met any younger women who reckon she is any good.I met a woman who said the BCN came to her house to discuss things with her and her OH and was there for hours on many occasions. Explains why she was not answering anyone else’s phone calls.
And what really gets me is why when they deal with this every day do they never, ever volunteer any information that might help? It’s like getting information out of the KGB! If you don’t ask they don’t tell you - does it never, ever occur to them that you might be embarrassed to ask? A bit of training on how to offer help without making someone feel like a failure could go a long way to improve the BCN experience.
Some people are really good at getting the most out of other people - some aren’t. If you find it hard to speak up maybe OH can say something on your behalf, they take more notice of families than the patient, especially if he says it is getting to him.
Hi I wholeheartedly agree with what you have said about the BCN’s. As lovely as they are, if you appear to be coping then you don’t seem to hear from them. I suppose it enebles them to spend more time with the people who are struggling to cope but I can’t help the way I am.
I have had to chase a few things up myself, the main one being my referral to the oncologist. My referral letter appears to have been “lost”!! But I have to say my breast care nurse did chase it when I rang, and told me to ring the oncologists secretary!!??!!
I tend to try and deal with things with a certain amount of humour which doesn’t always go down well!
Each of us are different and we all seem to manage in our own way, but an offer of help when they know your situation wouldn’t go amiss I’m sure.
Good luck with everything and hope you can manage to get something sorted about childcare. Take care. Debbie. xx
Hi Signet
I have just come across your thread and wondered how you are feeling today?
I am due to start my first FEC next Thursday, and also have little ones to take care of.
I used sip ginger tea for pregnancy nausea, and also suck on ginger sweets, they were like chewy sweets from Holland and Barratt. I wonder if they may help…or some dry crackers and flat lemondade to keep the nausea at bay?
The other thing i thought of was peppermint oil, i used to inhale a few drops on a tissue or put in a burner to try and ease things a bit.
That 'friend ’ of yours needs shooting, what a stupid and thoughtless comment to come out with…GRHHHH some people!
Have you tried contacting your local Homestart scheme at all? They have volunteers that visit families with little ones, to give parents a break each week. I used to be a volunteer, now i am thinking of having one myself as any help would be great…it’s all free and you just tell the scheme co ordinator what your needs are and they will try to match you with a suitable volunteer…
Hi Signet
like you I’ve had trouble with the nausea vomiting and headache.
I’ve tried all the drugs appart from a brand new one called I think apprepitin trying it on monday if it works i’ll let you know ( not many places use it as expensive!!). The flapjack sounds good though!!
I don’t know how old you are but under 40’s can get special days I think with the willow foundation I know one girl went to center parks with her family unfortunately i’m too old 44.don’t forget the DLA not means tested but gives you£70 per week fill it out thinkingonly of your worst day.
hugs and kisses
Ali
sorry never replied but since i posted i have been to hell and back.
Things got progressively worse and i ended up with 3 infections, neutropenic(spelling?) and admitted to hopsital as i got into difficulties breathing. I reacted to the injections they were giving me to up my white count lol - it could only happen to me. I spent a week and a half in incontinence knickers and pads and cant count the pyjamas that were binned. They had to remove my hickman line as it was infected and when the took it out it swelled up like a balloon and only burst yesterday and loads of pus came gushing out. Its still going but have to say i feel better and my temperature has returned to normal for first time in weeks.
On more antibiotics and chemo has been postponed till March. I have to start Radio instead in January. I have not to get anymore FEC as my body cant take it so i am getting six taxotere instead to make up for the 2 FEC i didnt get. I just pray i cope with the next chemo cos the oncologist said it would be a worrying situation due to the grade and stage of my cancer. GULP. I think all my problems have been down to getting C DIFF in hospital when i got the line in and its just come back attacking my body after each treatment. They eventually gave me oral metronidozol which is the only cure for C DIFF but thanks to the delays i was made to suffer all this.
Jane i completely agree with your comments about BCN. Its like Spooks up here. I keep finding things out myself and when i ask her she says oh yes thats right. Great service - NOT. I agree that if you cry and moan you get better treatment but its just not me.
I didnt know about the Homestart or the DLA girls so thanks so much. Not sure i will qualify for DLA as i have a fairly decent salary as does OH so will need to check.xxxx
Kentish lass, that sounds amazing bout Centre Parcs and I am 36 so would hopefully qualify!!! We never seem to get anything due to our salaries so it would be really nice! xxx
Hi sorry to hear you haven’t been well. As if chemo on it’s own isn’t enough to deal with.
I had a very bad second Fec and seriously wondered whether to have a third! It was postponed for 2 weeks for various reasons but I had it in the end and I have not been too bad. Quite bad nausea this time but effects nothing like the second one.
I start tax on New Years Eve so that will be a different set of effects again I expect.
Hope you feel better soon and good luck with the radiotherapy.
Hi Signet
How are you today?
Gosh you have been through the mill haven’t you…hope you are managing to pick up now?
Defo agree with some of the comments about the BCN’s - some are great is would seem, and with others, it is like extracting teeth trying to get info from them…grrrrhhhh!
Good luck with the radiotherapy and have a restful Christmas. xx