Hi all!
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
Kip
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!
Kio xx
Morning everyone,
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!
Gx
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
Hi everyone,
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!
Gx
Hi
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.
Gx
Aww Kath!
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
Georgie
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...
Big hugs
Kip
xxx
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.
Gaby x
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!
Kip
x
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.
Gx
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...
Love Kip
xx
I am similar to you in that the seemingly long wait for treatment to start seemed never ending. I had my first chemo yesterday and feel better that the treatment has started. This forum is great because unfortunately people either saying you are strong or you’ll come through this does not mean much.
There are times when it is hard, sad or you’ll want to shout, just go with it. Use the forum. I don’t post much but take heart from reading others posts.. be kind to yourself.xx
Hi everone, I've been following this thread silently for the past few days, mainly because I have been feeling so low that I just couldn't think of anything to say. I'm still feeling very sad today, but reckon it's better to share this than stay quiet.
I am starting chemo tomorrow and hopefully that will help me feel a little more upbeat, just because the wait is now finally over and something is actually being done to get rid of this blasted BC. I seem to have spent my last week in hospital having one test after the other. Now they've discovered a large ovarian cyst, which has probably been there for some time and isn't causing me any problems; looks like it's benign, but they are doing more blood tests etc. I suppose it's good they've checked absolutely everything, but I've had enough of tests for now - I need some action!
I'm sure I'm not the only one struggling with lots of negative thoughts and emotions. I am constantly being told by friends and family, that I am so strong and will get through this (well-meaning support, but somehow not that helpful) - but right now I really don't feel strong and just feel like crying. I have contacted my BCN to see if she can maybe help and am waiting for her to call me back. But if anyone has any tips or advice on how to get through these "dark days", I would love to hear.
Gaby x
MamaTony, I would phone the nurse in your position. She can check the system and see if the results are in, and if they are, you can ask for an earlier discussion. My nurse phoned me today just to check how I was, and i asked if my lymph node biospy results were in, but they weren't yet, so hopefully will be back when I go to clinic next Tuesday.
Oh MamaTony - it does frustrate me when they do that, why tell you half a result and then say you can't have the full picture until another day!!! GRRRRRR... I wish they would say nothing at all or tell you everything... I do know that the scans can show up all sorts of things, scarring, cysts etc so don't panic (easier said than done I know). Good idea to ring the nurse, she wil be able to put your mind at rest.
Kip
xx
Thanks for posting. I am just gearing up for first FEC chemo on Monday afternoon. I don’t think it has hit home yet how ill I could be feeling afterwards. Trying to be practical as I live alone. Onc has given me Emend to start before first chemo and for a few days after along with arranging for the district nurse to call to give me an injection. Hopefully all the meds will work. X
Hello Ladies, just thought I'd join you.
I've just seen my oncologist for the first time, and I'll be starting chemo the week after next. I've been given the option to take part in a clinical trial and I need to let them know on Monday if I do want to do it.
I'm feeling a bit down as my surgeon said a few weeks ago I was HER2 positive, but the oncologist said it's triple negative, which I know isn't great :-(.
I had a SLNB on Tuesday so I'm still waiting for those results. I go back on Monday to have some smaller tumours biopsied, and to have a marker inserted in the primary tumour. Then go back on Tuesday to sign the consent if I want to do the trial. It's all so much to take in,and the chemo side effects list is lengthy for the FEC-T regime that I'd be on if i don't take part in the trial.
I'm sure it will be helpful to see how you all are doing, as it's a scary time. I'm not too bothered about the hair loss as I have short hair anyway, I just dont want this cancer to spread 😞