Thanks K. Good luck to you too for your last chemo. I’ll have one more Fec then 3 T. Fortunately I won’t have to have radiotherapy. Am just hoping this pleurisy won’t delay next chemomsession - fingers crossed x
Hello ladies. I have been following your progress but have not yet regularly contributed, but would love to join in. I started my chemo right at the end of August & had my 2nd round of Fec 9 days ago. Have got to say that since my diagnosis in May - triple negative grade 3 tumour, it’s been a hard slog. I had a double mastectomy & reconstruction at end June, followed by 2 infections & lost one of implants as a result. I’ve had to have a central line fitted which has not been problem free. Yesterday was diagnosed with pleurisy so back on lots antibiotics & strict rest. On Monday I am going in for a scan to check that I don’t have a blood clot on my lungs. I’m wondering when the bad luck is going to end!
I’m usually awake at all hours so will keep checking in to see how you are all doing xx
ElliesMum - regarding work. I know everyone is different and some have suffered more than others. I'm very lucky in that I work from home all the time (and only part time so just mornings and all day Fridays) but I have found when having FEC I took off days 1, 2 and 3 (Monday - Wednesday) and then was back at work on day 4 onwards for the rest of the cycle. On T I have the initial chemo day off (Monday) and then go back to work every day afterwards. My chemos are always on Mondays so with T I found the worst side effects are on teh Saturday - Sunday (days 6-7) and doesn't affect work. As I said I work from home all the time so don't have to consider travelling or avoiding anyone with illnesses so its easier for me. I do find working gives me normality though and I can just (try) to forget whats happening. I think if I had to go out to work I would have found it harder because it doesn't matter what I look like, I can work in PJs if I need and go bald at home. I would say if you can work you might find it helps but you have to wing it a bit with the first chemo and see how you feel... don't push yourself too hard, if you need time off then have it. Some ladies find it better not to have to worry about working but I guess it depends what kind of job you have. You may not be able to be in your place of work during days 7-14 when your white bloods are low in case of infection. My job can be very quiet so I can lay on the sofa and wait for the phone to ring.
P.S> you can never have "too many" scarves!!
Looks like you have had lots of tips so far. I am from June Chemos and have had 3 x FEC and 2 x T so far. Make sure you drink lots the day before chemo, its helps to get the veins nice and plump and easier to use. I kept a stash of ginger biscuits, mints and sweets with me and beside the bed incase of nausea. Keep a bottle of water with you at all times and drink lots especially the couple of days after chemo. It helps to flush it all through. Eat what you like when you like, little and often helps with nausea. Take all the meds they give you, and don't be afraid to call the hotline if you have any worries, they are great and answer anything! Do you have a good thermometre (ear one is good), you need to keep an eye on your temperature. First cycle I was paranoid and kept taking it every hour but you get used to that and by 2 or 3rd you don't need to take it so often but do keep an eye. If you take paracetomal for headaches or aches and pains remember to take your temp before hand as it can lower your temperature. I think you said you are having FEC? One part of the FEC is red and as soon as its finished your wee will be bright red.. don't panic thats normal and it soon fades!
On the day, as the others have said, comfy clothing, a friend to chat to, a book to read, nibbles and drinks. For FEC the nurse will sit with you and feed the chemo into your cannula so you'll have her to chat to as well. The thought is definately worse than the deed, I cried throughout my first one but it was over within about hour and half and I was off home. The side effects (mostly a bit of nausea... like morning sickness I found) lasted a few days and then I bounced back. You get more tired as things go on, but rest up when you need and most importantly of all... keep coming on here, we are all going through it and will help in any way and its nice when you have things to pass on to others too.
Oh and I keep a diary, I write down everyday when I have taken pills (theres usually a lot to remember) and also any side effects, you will get to see a pattern as each month usually follows the same pattern.
Hair - sorry to mention it, not sure if you are cold capping? I didn't and my hair started to come out by day 12 of first FEC, I then had to have it shaved on day 15 as falling out really quickly. Others have hung on a bit later than that. I had my hair cut short beforehand as my hair was quite long. Its distressing, I won't lie, but you soon get used to it, there are lots of lovely hats/scarfs and very cheap on ebay/Amazon. I also have a lovely wig, the NHS should provide you with a voucher to help with payment, I had to pay the first £70. Ask if they haven't already told you about it, as its good to have one ready if you choose that route. If you go onto June Chemo starters there are lots of photos of us rocking our baldies! Its very liberating and by First cycle of T my hair was starting to grow back, I have about 1cm now!
Oh and book onto a Looking Good Feeling Better course if you can, lovely morning where they show you how to apply makeup, draw on eyebrows etc and you get loads of freebies - about £250 of makeup! Well worth it and a nice pamper when you need it!
i am on day 12 after 1st fec chemo.
i went wearing comfort able clothes, layers as temperature will vary especially if you are going with the cold cap. (I couldn’t tolerate the cold cap but so far no sign of hair loss).
i took water to drink as I am not a tea/coffee drinker, they did bring drinks around but you could wait a long time if staff are v busy so yes take a flask.
something to read, crossword whatever you enjoy. Take sweets and snacks, I didn’t,t but others kept me well supplied.
i was only there a couple of hours, less time needed without the cold cap.
they will probably give you tablets to take there and a host of them to take at home over the next few days. Main aim to stop nausea and sickness, and to build you back up again. They will give you a thermometer.
I had a district nurse call to me the following day with an injection to help boost immunity. Others on the forum have been given injections to do themselves.
to be honest it has not been as bad as I anticipated but there will be a cumulative effect as I have more sessions. Side effects for me, not sleeping the first night, hunger both apparently due to steroids. My anti sickness meds worked a treat. Felt I’ll, flushed but my temp didn’t go up to cause concern. I was reluctant to drive as I just didn’t feel right. Sid effects progressed to sore mouth, they may give you a mouthwash to use and your dentist can prescribe toothpaste. Aches and pains which caused walking problems but only lasted 24 hours. Biggest side effect for me was tiredness.
will be thinking of you.xx
I'm on week 2 of chemo (Carboplatin & Paclitaxel). Here is what I've done for the past couple of weeks to prepare:
1. drink pently of fluids every day (at least 2 litres, more if you can manage).
2. I take the following in to hospital: water, a hot drink in a thermos (I take Lemon & Ginger to help with any nausea), lots of snacks (I seem to get very hungry and was told by by BCN it's actually good to snack through the chemo to combat nausea), some light reading, headphones, extra socks in case of cold feet, a thick cardi, hairband & conditioner for cold cap - basically, I prepare for an expeidition, but it's worth it as I can relax once I'm there.
3. Continue to drink loads after chemo
4. Beware of constipation - mine crept up on me and I had awful stomach cramps for seeral days in week 1. None of the pills I was given helped, but prune juice did! So I now have a glass a day and that seems to be doing the trick, but everyone seems to find their own remedy for this.
5. Finally, relax - I know that many of us here struggle with some awful side effects, but maybe I've been lucky or it's just early days, but I found the waiting for chemo far worse than the treatment itself. Everyone on my ward is very calm and professional, and the other patients are very supportive, particularly of "newcomers". It's obviously not exactly a fun day out, but it's what is going to get rid of this bl...y cancer, so I try to stay positive.
I hope this helps a little. I'm sure others will have many more tips and it's worth looking through the threads for other months as well.
Thats good MamaTony, like you say its weird how your priorites change. I went from total shock at being diagnosed to being glad it was only in 1 breast to happy that only 3 nodes had cancer!
Hope you got a good nights rest.
Thought i better check in as been awhile, im currently day 13 after 1st ec, shaved head day 5, admitted to hospital day 6 (high temp) only stayed one night looks like start of infection so antibiotics given. Constipation gradually subsided only had to take one lot of senna which was good. Feeling really good actually. New thing that is happening, hairloss but NOT on my head!! Yes lady fuzz 🤣
Love & Hugs Bee 🐝 x
Good luck Mamatony! Dont worry about online shopping we class it as a side effsct of chemo!! Just blame chemo brain!!:smileyvery-happy. As for venturkng out during middle week my onc said to avoid public places like cinema, theatre, schools etc but to still go out, if i needed the sioermarket try to go off peak and take hand gel and use regularly! Avoid anyone with colds etc but dont loxk yourself away, i still try to get out in fresh air for a walk.
You are all doing well big hugs
Hi thank you for your kind words l have had my haircut really short it's a shock when I look in the mirror but it's done now no going back l Wear my hat in the house but haven't been out yet but when I do I will wear my wig l am still struggling with the treatment had to phone a couple of times better day today so hopefully it will get easier good luck with your treatment.
Hi ladies, re constipation... I get it every time with chemo, think the steroids do it. I was told not to take too much senna but to get lactulose, you can get it over counter and take some each evening before bed, it rwally helps me. Also drink plenty and prunes with breakfast!
Also ive never heard of no black pepper i add cit to everythjng especially when taste buds go walm about. Glad to see you are all doing well, though.
Oh and j have a fringe with velcro on which came from Macmillan cente at my hospitsl perfect for tucking under a hat or scarf!
Well, Senna hasn't worked for me either, so am picking up something stronger this afternoon from the chemo nurse. She also suggested eating oranges, so I'm trying that too. Anything to get things going! Had a lovely conversation with my nurse about wind and rabbit pellets - sounds like a walk in the countryside, if only!! So dignified all this!
Oh yes you gotta laugh! I thought constipation may affect me as I wasn't my 'usual' yesterday morning lol I got senna yesterday and took two last night, back to normal today but I think I'll keep taking them, as well as loads of fruit and water xx
after two bad nights and a day with stomach cramps, which I initially thought were very bad period pains, I took myself off to A&E this morning. Luckily it's "just" constipation, so have been given Senna tablets which should hopefully help to sort things out. Has anyone taken these before or got any other good tips on what to do about constipation? Don't fancy this as an additional ongoing problem.
I agree we're all pretty amazing. I was joking with my husband in A&E that I've got far less concerned about whipping my clothes off in front of strangers, talking about all sorts of unpleasant bowlmovements (or lack of) etc. You've got to try to see the funny side of things, otherwise we'll just go completely crazy!
First post here, chilling in bath reading your inspiring posts! Aren't we amazing women??!!!
I've had wide excision and sentinel lymph node dissection for grade 3 triple neg cancer, started first of 6 fec 75 chemo on Thursday 13th.
Drank loads before (usually do anyway) and had slight queasyness, I was given Akynzeo an hour before and then dexamethasone twice daily for 3 days, seems to have worked well, also took metoclopromide first day just in case.
Biggest problem has been cough (which I think may be from the enalapril I'm taking for a clinical trial) but it's making my throat sore and I'm repeatedly checking temp incase it triggers a throat infection!
Also got chemo foggy head, and a bit headachy, checking temp prior to taking paracetamol.
I've had odd tingly tender sensation in eyebrows and hairline?? Bit early for it falling out lol?! My lovely 14year old daughter cut my quite long hair into a bob to get us all used to less hair, my main concern is people getting me mixed up with my hubby who shaves his head bald all the time, I have visions of the kids walking into the kitchen saying "oh I thought it was dad?!" 😂
If we go out in public I think one of us will have to wear a hat!
I'm getting a wig but don't plan to wear it all the time, get irritated with things on my head (that's why I didn't really consider cold cap, the thought of it gave me a headache!) I've got my family onto making a diy fringe on a hairband to wear under a hat, saw the idea somewhere in these forums but didn't note the ladies name, Thank you to her for the idea!
Was anyone advised to avoid fresh ground black pepper? I was but didn't get chance to ask why, I'm vegan so don't need to worry about avoiding the other things like prawns, but I used pepper every day and have had to hide it in case I forget😊
It's a great help reading everyone's experiences, love and hugs to those struggling at the moment, we'll get through this together xxx
Well, it's done - just got back from the hairdresser! Had it cut to just above chin length. This will take some getting used to. My kids have been very sweet and seem genuinely enthusiastic. I keep looking at myself and thinking - not sure, help! But my hairdresser was so sweet, lots of hugs and encouragement. How did you get on, Pat?
About needles - I hate them, so jumped at the opportunity of having a Picc line fitted. I didn't actually fancy that much either, but the procedure was very straight forward and not at all painful. A week later and I am doing exercises and using my arm as normal. And the best thing is, everything can be done through this line now - no more needles! I would defitinively recommend this for anyone (like me) with a needle problem. Also, apparently your veins "disappear" over time with all the injections and blood tests, and then they have to dig around to find them. Grrr, I just really didn't fancy that at all.
You poor love...
my chemo nurse on my first round told me to call the chemo hotline and that it might be possible for them to give me a drip to re-hydrate if you are being this nauseous and cannot keep anything down at all.... they won't want you to be this bad at your chemo unit either.
All the best
Hi LittlePixie, sorry to hear you've been feelling blue... hope things pick up now you've got the chemo underway. Love the sound of the away day... I definately have the belly for belly dancing!
Pat & Gabby - Sounds like you are making the first steps to near hairstyles... I had past shoulder length hair for well over 25 years and had to brave having mine cut short before having chemo. I didn't want to see the great lengths falling out. I went for a very short pixie cut (as short as I could go without actually being shaved - I didn't cold cap so it didn't matter too much) and I was so surprised... everybody loved it.. in fact everyone has said "don't grow your hair long again you look so much younger" even the butcher told me on Saturday how young I look (I have since got a short wig and he didn't even realise it wasn't my hair!). I would never have been brave enough to try a short hairstyle if it wasn't for chemo, and I was devastated when 2 weeks later I had to shave the lot as it all fell out very quickly but at least this blasted C gave me one positive... I now know I can rock short hair! Good luck with the hair cuts.. my hairdresser knew why I was doing it and was very helpful, I did cry but 5 chemos have passed and I am getting hair back.. albeit short fluffy white stuff...
Hi Pat, (I thought I'd posted this earlier, but somehow didn't - technology or chemo brain!?) I'm having my hair cut short tomorrow as well. Initially I got myself really worked up about this - I haven't had my hair short since my granddad made me have a very short bob when I was 8 and I was furious! Now, however, I am trying to see it as another step towards recovery and maybe it will even be fun to try something new. Have you had a look at styles online? I got some advice on this from my daughter. She is 17 and thinks I might actually look quite cool, which would be a first! Have you spoken to your hairdresser? I think it's worth telling him/her that you're not doing this out of choice and are feeling a bit anxious. I spoke to mine and she was lovely; I've been going to her for years, she's had cancer, and will help me through this I'm sure. Incidentally, when I finished cold-capping yesterday, one of the chemo nurses advised me not to have my hair cut too short i.e. keep the hairline at the back covered, so that my neck will still be protected a little during cold-capping. This might be a good intermediate step for me and less of a shock (until my hair starts falling out!). Here's to the new us - good luck for tomorrow, Pat.
Yup I agree with KTK... the FEC seems to hit quickly but you bounce back again after a few days. Just rest, drink and take it easy. I believe some people do feel the cold with it too, I got hot flushes so went the other way. Box sets, duvet and PJs and rest up!
Hi Kip, Thank you so much for sharing your experience. It really helps to see that I'm not the only one struggling. Oddly enough, once I'd put my last post on this forum, I started to feel so much better - it's like a valve was opened and all my bad feelings started to leave. I'm sure there will be more bad days, but at least for now, I'm ok again.
Had my first chemo yesterday which went really well. So far no sickness: I've been given a barrage of tablets, am also drinking lots of herbal teas and water, and wearing anti-sickness wrist bands. I'm throwing everything at this and something seems to be working - so far I'm feeling fine, hurrah! My nurse yesterday was so kind and efficient, which really helped. She changed the bandage on my picc line, which had been bothering me and my arm now feels as good as new, even managed to do some gentle Pilates this morning, so am feeling rather pleased with myself. The only thing I've noticed is that my temperature seems to have crashed to just under 36C - has anyone else had that happen after chemo? I've had a hot shower, piled on layers of clothing and am having hot drinks. I'll keep an eye on this till lunch time, as my BCN was very keen for me to monitor my temperature. I don't actually feel cold (though I did last night), so it's a bit odd.
Met a lovely lady on the chemo ward yesterday, who has almost reached the end of her treatment. She gave me lots of encouragement and some tips about cold capping and hair (cold cap wasn't actually too bad at all after first 10 minutes). She went round all the patients and chatted to them, before she left. It was such a kind gesture and you could see people's faces brighten as she moved through the room. Ordinarily her chattiness might have annoyed me slightly, but it was just what I needed yesterday. I shall remember her kindness and cheerfulness - these small things make such a difference and it is important to treasure them amidst all this rubbish that we have to go through.
Hi ladies, sorry to hear some of you are struggling at the moment. I've been there to, and still get there sometimes. I was diagnosed in April and have had MX and 5 x chemo so far (3 x FEC 2 x T) and I get you. My gosh I have cried more in the last few months than I ever thought was possible. I have had every black thought going. Ive shouted that "I want my old life back" on more than one occasion. Its normal, its crap and there is no quick fix BUT you won't always feel like that. When I was first diagnosed I could not see past the next hour or two, but I spoke with some ladies who had had breast cancer and I read every thread on here and everyone said... the most difficult part is the beginning... when you are waiting for answers, having more and more tests, results keep changing and it feels like nothing will ever improve. Once you get treatment started you feel more in control, something is happening, you have answers, although you are always waiting for the next answer too. And those ladies were right, I feel better now that I am doing something. Remember its ok to feel scared, angry, to cry and shout, come on here and do it if you feel you can, we have all vented our frustrations and there is always someone with a word of wisdom or a "big hug" who understands. I have days when I just cry and can't see forwards, I think we always will, its human nature to be scared, but don't be alone, we are all here.. this forum has literally saved me ... you all get exactly how this feels and only someone in this **bleep**ty old ride can fully understand. Also, dont be afraid to speak to your BCN or ONC nurse or MacMillan unit or GP if you need to, there is so much support out there.
Oh and by the way... you will come to laugh at some of the most insensitive things people say to you...I've had some corkers!!
Take care all of you...