@hopeful1974 I am sorry to hear about your anxiety and sleep issues. I too am having problems with sleep which I never had in the past. Used to sleep like a baby and wake up after 8 hours with covers barely having moved. Those days are long gone. I seem to now sleep in 2 hour bursts. Trying to limit the fluid intake in the evening as that was getting me up too. Think menopausal symptoms have a lot to do with it as well. Am just trying to accept this is the way it is now but not good when you don’t feel rested as the treatment is tiring anyway. One of the nurses did give me some hope that I can take something herbal down the line to help with menopause but it will depend on what the tablets are I have to take going forward eg tamoxifen.
@Teagold that’s massive getting the results of your gene test. I have not had to go through this but presume because I don’t have children it stops with me so to speak. I had a single mastectomy in December and found the recovery ok but totally understand a double is completely different. I have personally found the chemo much harder to deal with than the surgery. Sending you massive hugs today and positive thoughts.
On the skincare side I had a chat with a nurse yesterday and she mentioned a website called the-c-list.com. It was created by a lady who had BC together with a make up artist. Loads of products recommended for people going through treatment with specific skin needs so am going to take a look.
@ktruffin thanks for those tips from Penny B that was really helpful. I’m trying the frozen pineapple chunk thing too - my lovely mum god bless her brought round a whole pineapple and chopped it up for my freezer (I wouldn’t have faffed around doing it myself) but it is really refreshing and helps the grotty mouth taste.
@hopeful1974 sorry to hear about the sleep probs and anxiety, I haven’t had this as badly though I’m waking up much earlier than I normally do (more to do with churned up tum) - I have a couple of lovely pillow sprays that are helping to calm me down at night but that’s all I can offer up there. I hope you manage ok over weekend without the anti-deps and that the gp can give you other options.
So I got my genetic tests back and lo and behold I do have a gene mutation - not BRCA 1/2 but another one (palb2??) which means it’s double mastectomy for me when surgery comes and also I have to start letting some family members know to get tested. Also my girls will have to be tested and then potentially screened etc from early age - this is the hardest bit thinking that it could be a risk to them, but given that it is what it is thank god we know. I feel oddly quite calm about it and have gone into practical mode re the surgery bit because having a double I’m assuming is a much bigger deal with longer recovery and I’ll need more help etc etc. But I’m sure once the calm head wears off I’m going to have a few major “snotty mess” days.
Oh, and after the drama of the phone call with the genetic doc I managed to walk out of chemo ward and get the train home without having my port needle removed. I’d just got through the door when nurse called to say “erm - have you still got your needle in?” - so back up to hospital for me and not home until 8pm. All in all - not my most fun day ever but managed to see the semi-funny side of having been such an idiot as to see stroll out with a needle in my chest!!
Hope everyone else doing ok - at least we might have some brighter weather coming up next week.
Dear @hopeful1974 ... I’ve just read your thread... gosh you’ve had a hard two weeks after your EC 😢... it’s been a week yesterday after my last one and round 2 was harder for me too I think. More 🤢more weak and more aches and pains in lower back and legs but think that could be the injections.. they stop today.
I too don’t sleep great either as Mind goes into overdrive in middle of the night, but I downloaded the Calm app and it has seriously made a difference to me. You could maybe try it.
As for antidepressants... yes they will make you feel sick to begin with until they get into your system.. they can take up to two weeks to work.
I hope you are feeling better today. I’m going to go out walking with hubby and dogs today as I’ve not been out apart from garden since last chemo.
Have a good weekend. Sending hugs.
Keep me posted as to whether you’ll have your op in the middle of your chemo. I’ll still be having three more chemos and Herceptin afterwards so will stay on this thread to see how others are getting on.
Re sleep, if anyone has any tips, I’d be grateful too as mine has been difficult. I never used to struggle with sleep and I think it’s not uncommon for it to happen on chemo. I was prescribed some sleeping tablets which do help and I’m reluctantly taking them. I never used to take any tablets for anything prior to starting chemo, but a good night’s sleep is pretty important to me and I then have more energy in the day. I managed a walk with a friend yesterday and was downstairs for most of the day rather than in bed, so I feel that is progress. It is two weeks since I had my last EC. I think I would have recovered sooner but I was started on some antidepressants by my GP and they gave me bad nausea! Not what I needed when I am trying to build myself back up for surgery. The GP has suggested I stop those for this weekend to pinpoint whether they are the culprit. I’m pretty sure they are. I may be trying some different ones as of next week. It is to reduce my anxiety long-term and I’m hoping they may also help my sleep eventually.
Thanks so much for the pointers re the skincare which are good to know. Want to try and stop the lines steadily creeping down my chin and side of mouth too. Chemo is the gift which just keeps on giving doesn’t it! Have heard of Beauty Pie too as a friend uses them so will look that up too.
Congrats re the new car - that will give you a real boost.
As for the milk accident as you say couldn’t have been much worse when our sense of smell is so off the scale. I think mine is getting more sensitive as the time goes on!
Gelbel - what is wrong with a bloody good cry! You need to let go and you are clearly shattered and its making you emotional plus remember all this chemo is sending us menopausal / hormonal so its to be expected.
A nurse mate of mine told me to go for bitter and spicy flavours to deal with the yeuch mouth. It really works. Warm water with loads of lemon or lime - especially first thing when you wake up. Fennel, aniseed, licquorice, rocket, radish, radicchio, chilli. Go oriental or mexican - can work better than bland flavours.
Here is advice from Penny Brohn on foods for different conditions.......
TOP TIPS FOR HELPING TO SUPPORT SYMPTOM RELIEF DURING TREATMENT
FATIGUE AND LOW MOOD
REDUCED APPETITE / CHEMOTHERAPY
SORE MOUTH AND ULCERS / DRY MOUTH
DIGESTIVE UPSETS OR INDIGESTION
GENERAL CONSIDERATIONS WHICH MAY SUPPORT BALANCE – WHOLISTIC APPROACH
“Just because your path is different – it doesn’t mean you’re lost.”
@Gelbel I’ll refrain from quipping about crying over spilt milk... the smell of spilt milk at the best of times gets me so definitely not what you need right now!! Good news about the car.
@CrazyCatLady thanks so much for reassuring words about the blood tests - you’re so right, I immediately go into overthinking mode. I also have to have a halfway scan in a few weeks and trying v hard not to think about that - I feel I can cope with my treatment routine but anything out of the ordinary stresses me now. Fingers crossed. Really sorry to hear you had a rough couple of weeks again, and amazing that you still managed to WFH for some of it. Hope you’re feeling better now? For what it’s worth I can’t stomach the ginger and lemon tea but I got some “spiced ginger” which is really lovely and did help perk me up this week.
@Gelbelyour beauty products sound way more sophisticated than mine, I’ve moved from Olay to CeraVe for hands and face and just find it really soothing, but given the close up photos my 11-year-old took of me last night on her phone, it is definitely not making me looking any younger...
Right, I’m strapped in the chair waiting for bloods so I’m going to put time to good use looking at gym n swim wigs...
Good news about the gym wig @Kaz11 They are great aren't they? I'm thinking about a blue one but I need to stop the spending as I've been a little OTT recently.
Re face creams. A few years ago I decided I needed to do something about the lines and went down the Boots No7 route. The No7 LABORATORIES LINE CORRECTING Booster Serum and blue serum really worked for my face and the booster and pink one for my chest. Can't say the creams did anything. For about 9 months I've been using Beauty Pie, the eye cream is outstanding.
I've noticed my lip lines are coming back recently so I've gone back to using the No7 LABORATORIES LINE CORRECTING Booster Serum at night, which seems to help. It certainly stopped a side chin line that was creeping back in its tracks.
Beauty Pie is a subscription service and you have to do 3 months minimum. If anyone does want a try I can do the necessary so your first month is free. I've nothing to do with them but can't praise the eye cream enough, the Vitamin C body brightening cream has cured my bubbly back of arms and Super Healthy Skin Body Wash is very hydrating without being too rich. Both of those are serum-like. Bought hubby a foot cream and it's made a difference to his awful feet!
For 6 monthsish I've been using a hot cloth cleanser system. Aldi! With a Beauty Pie cloth. Oh my. My nose finally has very few blocked pores. When I met my pal at the services the other week, she commented on how clear(er) my skin looked. It's not all thanks to steroids!
Whoop, whoop. The phone call I've been waiting for. Tuesday is new car day! Which makes up for the words we've had in this house this morning... Anyone else's other half decides to look at your new shoes to help you decide which to keep with a glass of milk in his hand.? Held dangled between his thumb and forefinger?
Then drops it?
And I mean everywhere.
Milk of all things - with my taste and smell. 😠
Good morning everyone
Well, after my last post I ended up having a bit of a crash....ended up on sofa for 3 days not able to do much of anything. But, much better now and getting ready for next weeks' onco appointment, PICC line flush and bloods and Cycle 3 next Thursday. Managed to actually do some WFH on week 2 and week 3 after chemo, so better than last time. Does help keep my brain busy....and I hate housework at the best of times, so any excuse not to have to do it (just the washing/ironing and a bit of light worktop cleaning....then get hubster or daughter to do the other bits).
Have a horrible feeling I won't get away without the filgrastim injections for next cycle....starting to get very mild numbness on the ends of my index finger and thumb but just on my left hand (which also is the side where I have a ganglion cyct on my wrist...so could be that??) Something else to mention to my onco, along with my (extensive) list of other issues I've had in first 2 cycles lol! Think for me the crushing tireness is the worst - tried Nytol but no joy really, but may just have to keep on with them.
@Gelbel oh so sorry you had a rough time after your last cycle - it's pants isn't it 😞 And glad to hear you're feeling a bit better after having your 'snotty days' - we all get them (took mine out on a yorkshire pudding tray lol....it got flattened when I was in a crying rage with lots of stomping and swearing!). Also hope you're feeling better too @Teagold and got some more helpful councelling sorted out.
Oh and looks like we have another thing in common @Gelbel - my hubby is ALSO a professional driver, but doesn't do much these days as he's gone over to 'the other side' in management. He's now Service Delivery Manager for our local public transport organisation (no. 7 in the management heirarchy no less)
@Teagold I had genetic testing done pretty much straight away as first in family and also bilateral so they said this was quite uncommon. Said my results would take 4-6 weeks but they'd try to get them done as soon as possible. So when I got a call after just 2 weeks I too had a bit of a panic (we always think it's bad news now don't we!)....but all tests were negative!! So relieved, but more so for my 23yr old daughter - did not want her to have the stress of going through testing too. So fingers crossed it'll be good news today xx Also hope all goes well today and good luck with having your port out xx
I'm with you too on the no appetite in first week....feels like I'm force feeding myself. Also stick to really bland food like porridge or toast but have increased my museli intake to get a bit more fibre in my diet to keep the chemo trots at bay (seems to have worked for last cycle anyway). Fortunately, other than a couple of days after chemo, I can still have my morning cuppa....god help anyone if I miss my caffeine dose lol! Have tried the ginger and lemon tea, but I'm not really much of a tea drinker....but it was 'tolerable' just 🙂 And yes to ginger biscuits....getting through a packet every couple of days in first week!
@Rainbow70 and @Leftygurl well done on braving that shave....it's horrid at the time, but it does get better. For me now it just feels 'normal' and loads of lovely scarves, turbans and hats always around to keep your bare head warm. Glad to hear Alice that you finally got a PICC line in....mine's been brilliant and sooooo much easier for everything.
@hopeful1974 sounds like I may be following a similar path to you as I was told at the beginning of chemo they may stop it halfway through to get my surgery done too and then back to finish off the remaining cycles. So good luck for your surgery date....the weeks will fly by I'm sure xx
Best wishes to you all and keep smiling xx
That’s good to know it’s not just me re the hospital food. There’s nothing wrong with it as you say and the staff serving it are lovely- it’s just guilty re association I think!
Thanks for the info re the cold cap will give it some serious thought.
Big hugs for your treatment today.
@Gelbel I really loved your rant about people’s sense of entitlement. I actually confronted three complete strangers the other day for having one of those pavement-blocking conversations which made everyone else have to walk out in the road to pass them whilst keeping some distance - politely suggested that if they just moved to one side of the pavement there was room for everyone but they got very defensive and rude. Nice.
@Kaz11 yes yes yes re hospital food - I feel bad for saying it because it’s not bad food and the people serving it are absolutely lovely but I am coming to associate the taste with having treatment and the thought of it increasingly makes me feel queasy. Also the smell of the place. Re cold cap, I don’t know if this helps at all, but I’ve been on weekly paclitaxel now for six weeks and have cold-capped - although I’m definitely shedding and hair has thinned quite a bit (I had v thick hair which seemed to be always shedding a bit anyway tbh), I still have enough hair for it not to be so noticeable to the outside world. I’m getting away with a baseball cap when I go out (which I’m not doing much but just dropping kids at school etc). The thinning is right on top where the cap hasn’t fitted so well, so I’m now stuffing it between the hard and soft bits to push it down. The cap is definitely feeling colder each week as there’s less hair to cushion my poor scalp, but I plan to keep going for as long as I can/it feels worth it.
Ok time to get the hospital bag packed and head on off for my next dose. Good luck to anyone having treatments today and hope everyone else has a relaxing day whatever the weather.
Ps my gym wig arrived last weekend and I love it! Has given me the confidence to go walking without wearing a hat and felt normal! Ordered Tuesday night and arrived Saturday.
Also meant to ask has anyone been given any recommendations for facial skincare products to use during chemo? I stick to fragrance free moisturiser for my body but have been using normal creams on my face. Noticed however that more deeper lines developing around my mouth/chin which were not there a few weeks ago - worried I am going to look about 80 by the time this is done! Looked on a couple of websites but can’t see anything particular. One said to cleanse, tone and moisturise - tell me something I didn’t know! A company called Highborn coming up on my Facebook feed. The founder had BC herself.
Any recommendations welcome.
We crossed there @Kaz11 I'm with you on wetsuits, snorkels, blankets etc etc etc. Bit of sun in London and that's it we're all bathed in it right across the UK. Looks like there is snow in the air in Leeds this morning. It's freezing cold and blowing a gale.
In England, shielding ends 1 April. I think that's the date. Were being told to go careful. Makes me laugh how the arms of a clock can determine the advice. The volunteering support is there if we want it - certainly from my council. We've always avoided peak times to go about our business so for us it'll be BAU if/when we do out. I shop early, we go for late lunches or late afternoon drinks etc.
Hubby assures me my breath doesn't smell. I actually believe him as I know when the little tinker's lying.
Love AnGELa x
Thank you ladies. I did feel better in the evening after a little moan to my pals on our usual Thursday video call.
@Teagold your 1st para sums it up totally. If we don't have rotten weather I've the offer of a few bear hugs after the weekend. Mind you it's meant to pick up as we're allowed that bit more freedom. I've had some tears over this whole BC malarkey but not a massive uncontrollable cry. Usually I'm a cryer out of frustration but I know there is that big one waiting to come out. It's thanks to lockdown. So woe betide anyone I see jeopardising the roadmap. People have such a sense of entitlement these days and never think of the impact of their actions on others. And these are the ones who are first to spout be nice and other buzzwords they wouldn't know the meaning of if it bit them on the bum!
Ah, that's better.
And it's better because I've just had a hot x bun that tasted like... only a blooming hot x bun! Must add some Philly to the shopping list - gorgeous on them, try it.
Shower and cricket beckons - not necessarily in that order. And an extra serving of rugby tonight. Things are looking up.
Thanks again everyone. It's times like this when this forum comes into its own. One of my friends asked if I'd posted on here about how I was feeling. She gets it.
Loads of hugs and positive vibes for few side effects and smooth treatments if you're having/had them. 🤗
And great news about the picc @Leftygurl. Better late then never eh?
Love AnGELa x
Totally empathise with the “snotty mess” moments this week. This has been my low cell post chemo week so have had zero energy and spent a lot of time on the sofa. On the plus side my last injection is today - yay!
I too have found things hard and the days very long. In non covid times I would have had friends popping in and out of my house like yoyos offering support and much needed hugs but it is not an option right now which makes what we are all going through even harder it’s so unfair. As I said to someone I am dealing with a triple whammy - breast cancer, menopause and covid, it’s all awful. Even when restrictions eventually start to lift up here in Scotland the indications are that I will still need to shield until my treatment is over and right now that still feels like an eternity away. I may be able to meet someone else outside but going to a cafe or restaurant will be a no no as it will increase my exposure to infection. However the nurses did say the rules are changing all the time in shielding so I will need to ask each time I go. However I find the isolation brutal and if I hear one more time about meeting someone in my garden I will scream as it’s still way too cold here. I appreciate people are trying to help but some suggestions are ridiculous right now. Rain yesterday so I would have required a wetsuit to sit outside never mind a million blankets.
Totally agree with the taste in my mouth. Can’t even describe it just permanently rotten. Maybe just as well I can’t have close contact with my friends as I can only imagine that my breath must be rank too!
Have a decision to make about the cold cap before next cycle in 2 weeks which will be first weekly one. Some hair still hanging on but I found the cold cap harder the last time as less for it to make contact with. It actually makes me feel nauseous thinking about it so will try and put off thinking about it until the day. Also does anyone else feel sick thinking about anything you eat in the hospital. I get my lunch there on chemo days and anytime I think about the food after I could puke. Must be how I associate everything connected to chemo/hospital.
Big hugs to everyone. As someone has said to me we should not be too hard on ourselves. We are dealing with a massive amount on our plates at the moment especially with covid/lockdown thrown into the mix.
sorry meant to add - @Leftygurl so pleased to hear about the picc line and that you can now get the port removed, you must feel so relieved. Xx
@Gelbel - sending you a massive hug. I’ve had two major “snotty mess” moments this week so I’m right with you. I’ve been reading a couple of books this week by people who’ve had breast cancer (actually really helpful, I wouldn’t have been up for it before now though) and they talk a lot about how much it helped to see friends, have friends round, go to friends’ houses, get big hugs from loads of people etc and it really hit me how much lockdown is affecting this whole thing. Ok I know we can all meet up with people for a walk but it ain’t the same as having someone give you a massive hug while you have a little (or even a big) cry on the sofa.
And everything you said about the nausea - yes yes yes. Nothing I love more than a nice cup of tea and couldn’t stomach it for a whole week. Never mind all the people who think we should be eating nothing but organic veg - the only thing I’ve got the vaguest appetite for is cheesy pasta so if fish finger sandwiches are your thing then you just have to go for it. (And if one more person mentions turmeric to me I think I might scream.) The mouth taste thing was getting me down this week too - for me it’s less like sucking pennies more like chewing electrical wires or having a burnt tongue. Either way, horrible.
Anyway, I hope yesterday was better for you and that you are able to see your friend at the weekend.
And big hug to anyone having treatment today - I’m off for #6. Last week felt so rotten convinced they wouldn’t give it to me, this week feeling much better so Sod’s law my bloods will have plummeted!!
I can completely identify. My third EC laid me low for the whole two weeks and I’m still not right. I’ve been mainly in bed managing the odd short walk outside and then collapsing into bed again. My nighttime sleep has been poor as I am dozy most of the time during the day. I am taking sleeping pills and just started on antidepressants, which take a couple of weeks to kick in.
My treatment plan has been changed as a result and I will now have my surgery in the next four weeks to give me a break from the chemo.
Sending hugs to all who are struggling. Xxx
Oh @Gelbel @I really feel for you, the lows are so low aren’t they, is there any counselling services offered from your hospital? Talking does help, I’m lucky I’ve got a hubbie and a son to talk to and hug but I know how you feel about when we are able to hugging again, I’m just going to be crying all the time I think, must remember to wear waterproof mascara, mind you that’s if I’ve got any lashes left by then! 😅
On Tuesday my team had come to the conclusion that the cause of my problems with my portacath are that my body is rejecting it so they asked whether I would like them to try a picc line on my non-surgery side (I’ve got a plate on my collarbone that side, so it wasn’t apparently doable) anyway so they tried and it was a complete success! No problem at all, I couldn’t believe it, to think I’ve had to go through all these problems unnecessarily! But of course hindsight is a powerful thing but no good in this case, at least I have proved it can be done and somebody else won’t have to go through what I’ve been through, hopefully.
This morning had my 3rd treatment Zoledronic acid & EC and all was fine. Not feeling to bad yet but like you @Rainbow70 I didn’t cold cap this time so I’m expecting my last half an inch to come out, oh well it’s like someone on here (sorry I’ve forgotten) said, old me old hair, new me new hair!
Hope everyone is doing ok, I’m hoping to be too when I get this damn portacath removed on the 12th, and not a moment too soon 😊
Jeez what a horrible day yesterday... OK in the AM, did a bit of work. OK it took me a while to edit some copy then BAM💣. About 15:00 mega whoozy, felt a bit nauseous and I could do no more than lie on the sofa for a couple of hours. I did perk up a bit about 17:00 but had to hold on to everything when I moved around as I felt so unsafe.
Ended up going to bed at 20:00. Slept most of the night. Better today though still blurghish all round. I am going to look like a ginger biscuit from the ones I am having to eat every hour. I can't stand that tummy feeling and the blooming taste in my mouth. It's not so much metallic as a sort of just gone off top of the milk. My afternoon cuppa is no more. 😢 A stodgy white bread sarnie does help (fish finger one went down a treat for tea) but I'm sure the carbs aren't really.
I'm doing a bit of work this morning to pass the time but laying at 45 degrees to stop the whooziness. Mad I know but I can't lie around all day - it's doing my head in this time.
Sorry for moaning - felt so on top of this cycle on Tuesday.
I'm also getting very weepy at the thought of seeing my family... in June with any luck. I've only had short video calls with them since diagnosis in December and realise I need a damn good cry with my mum. TBH I can't really be doing with her (sorry, not sorry) and she's got dementia, just coping with it at home, made worse by lockdown, but it's a long time since I saw her/them in October. I think one slight touch from any of them and I am going to 'break' in some way or another. Might have to have one of my nurse chums over at the weekend for a chuffing good bawl - rule of 6, their bi-weekly flow tests and all that.
Aghhhh - I'm sat here in a snotty mess.
not sure if this helps but I was also given domperidone (in my mind keep calling it Dom Perignon - if only...) and told take 30/60 mins before eating I think up to 3 times a day. First few weeks I toughed it out with no anti sickness meds thinking I only needed to take it if and when I felt really sick, then after last week’s crash I’ve started this weekend taking two a day one before lunch and one before dinner. Does seem to have taken the edge of nausea and I would say each day this week has been a bit better than the day before, it didn’t kick in immediately like you say. I’m eating more which I hope means my weight is back up this week when I go in as I got a little ticking off from the dietitian last week. Somewhat ironic for someone like me who has spent most of my life trying to lose or manage my weight... Anyway the big message I took away was that it’s to be taken to prevent nausea from taking hold and that if that doesn’t work there are other things to try.
@Gelbel thank you lovely for the shampoo tip, I will give that a try. I can definitely see now that it is the top of my head where it’s all shedding.
I just got my appointment through for results of my genetic testing - this Friday. Starting to freak a bit as this is a lot sooner than I thought, only two weeks after they took the bloods. In typical overthinking fashion I’ve convinced myself this means they must have found all sorts of horrible mutations. Is anyone else going through, or has gone through, gene testing? I can’t think how I’m going to tell members of my family if it comes back positive and of course what that will mean for my girls. I guess just another piece of this rollercoaster to get through.
Hope everyone is ok - spring weather this week has definitely been a welcome boost.
@Rainbow70 .... ah so you have two lots of sickness meds? I just feel the domperidone takes at least 48 hours to stop feeling nauseous but perhaps that is normal. I spoke to nurse today and she is going to change meds to the one beginning with M that you have.Hope you’ve had a nice day everyone xx
Hi @Gelbel thanks will take a look at Olaplex and may order some . That’s good you have some new hair growth . I’m expecting to lose more after 2 rd cycle EC on Monday. Currently have a number 3.
@LottieLaing sorry to hear you have suffered more with sickness after 2nd cycle . I was quite bad with sickness first cycle of EC so i was prescribed Aprepitant for 3 days for 2nd cycle , had no sickness but nausea still bad first few days and seemed to feel more light headed . I have ondansetron and metoclopramide prescribed. Tend to take regular Ondansetron but if nausea bad again next week will take Meeoxlopramide regular also. As @Gelbel mentioned ginger biscuits are good to nibble on . I also wear the wrist bands but not sure if they help !
Sending love 🌈xx
@LottieLaing I've taken them this cycle (3rd EC) whether I need them or not as I reduced the steroids on days 2-4. I'm on Metoclopramide. My team told me to do this when I said I wanted to have less steroids as I'm so reactive to them. I also have indigestion tablets this time - one every 24 hours, 1 hour before I eat.
On my other 2 cycles I took the anti nausea tablets as needed - probably one a morning on days 4 to 7. It was suggested I take them as directed, ie 1 every 8 hour. However I didn't as I do have cast iron guts.
If you still feel sick as 8hrly is not enough, I'd call your team as they may suggest a different brand. Or try a ginger nut - they do take the edge off.
Hi @Rainbow70 been using Olaplex No.4 Bond Maintenance Shampoo And No.5 Bond Maintenance Conditioner once a week since September, through diagnosis in December, 1st EC 6 Feb and hair started coming out 2 weeks later. Still using the shampoo on my bit of fluff that's growing. Which didn't half feel strange blowing in the breeze of an open window when I took the towel off my head after I washed it on Sunday! 🌬 🤣
Hope that helps. x
@Rainbow70 .... I had my 2nd cycle of EC on Friday... 🤢 lasted longer this time and started sooner... but feeling better today and only had one sickness tablet. Do you ladies take them whether you feel sick or not? I’m on Domperidone and it’s 8 hrs between them and feel I need something before the 8 hrs on the bad days? X
Hi everyone hope you are all doing ok 💕
@Gelbel Have you started using the Olaplex ? I ended up having my hair clippered no3. I have my 3rd cycle of EC on Monday so I’m expecting to lose the rest as won’t be cold capping any more. Which Number Olaplex did you order please ?
sending love to all 🌈xx
@Teagold when I had to have my hair double bleached to get rid of red roots before diagnosis, my hair was a frizzy mess. My hairdresser recommend Olaplex shampoo and conditioner. It smoothed my hair within 2 washes and didn't strip the toner.
Anyway, while seemingly all rather pointless at the moment, she told me to use the shampoo as my hair fell out and now to help it out, and certainly, with a bit of conditioner as fluff grows in. I got mine from Amazon - not cheap, about £25 a bottle. A little does go a very long way.
Gosh @Leftygurl that sounds painful for you. I hope you get it sorted out. I just get mine through a cannula in my hand but it was sore this 2nd time too.
hope the Covid jab goes ok too. I was told by my oncologist to get it day before chemo or day after as that’s when our bloods are best. Maybe worth asking about so you don’t suffer too much. Xx
Thanks for replying Alice - my head buzz is exactly the same, find it really hard to concentrate on much these days! So sorry to hear it’s still causing problems but good that they are keeping close eye on you and I really hope that this week’s appointments go smoothly and that they can get to the bottom of the problem.
Well done for the buzz cut - I’m now seriously tempted as I’ve gone past the point of getting upset by hair shed, it’s just getting really annoying to have hair everywhere all the time! I’ve also noticed that the hair coming out just looks very poor condition, dry, brittle, all sorts of weird kinks - not like my hair used to look at all, as weird as that sounds it’s making it a bit easier to deal with.
Off out for a walk whilst the sun shines - hope everyone has the best possible day.
Thanks for thinking about me. I do read everyone’s comments and all are really interesting I just get a bit lost & confused with my ‘chemo fuzzy brain’ with who’s had and done what and which way round the comments run...forgive me lol
My portacath is still in my chest and up until yesterday been taking antibiotics 4 x per day for about 7 days, but they really haven’t settled anything down. The site is still swollen and red and I get neck ache still. The nurses are concerned and I’ve been visiting the unit every couple of days for a while and now every 3 - 4 days to check it and taking photos every day and emailing them. My next chemo cycle is next Thursday @ 9 and I’ve got to go in at 8 as they want to insert the Huber needle in in the radiology dept to make sure it’s going in the right place but I’m wondering if it will happen as Tuesday I’m up there for a blood test, line flush and another check. The portacath site looks red, bruised and swollen and I’m not confident and convinced that all will be fine, even with X-ray help. I’ve heard about other people who have had problems with this but usually the tenderness settles down after a couple of weeks but mine has been in since 22/02, almost a month!
In other news, I’ve braved the shave as my hair even after using the cold cap looked appalling so my son has given me a no5 buzz cut! Can really see the grey roots now but it’s a relief that I don’t have to do the combing every day and seeing more & more come out on the comb, very upsetting. I’ve got some really cool bandanas you tie yourself in red, blue & green and people say I’m rocking the look so happy about that! And I’m happy it’s still cold enough outdoors that I can still wear my woolly big bobble hats too. They are awesome 😎
Im off to go and get my 2nd Covid vaccine today and hoping I don’t feel too fluey afterwards as I’ve got next week off and really want to enjoy feeling like me before next Thursday, you all know what I mean. 😊
Happy Sunday everyone, hope you can enjoy it in any way you can!
Morning all - hope everyone having a relaxing weekend so far. I’ve woken up feeling a bit tender, so planning to take it very easy today.
@Leftygurl /Alice I was just thinking about you and noticed you hadn’t posted for a while, did you get your portocath issue resolved? How are you feeling? I really hope everything settled down and that you’re ok.
You are welcome @LottieLaing
Tiredness kicking in for me now so heading for bed shortly to chill and have a FaceTime with my nephew and his girlfriend.
Take care everyone.
@Kaz11 @Thanks so much my lovely for all the info. Gosh you are on a lot of meds. I have domperidone and omeprazole... plus the 3 antisickness tablets you get for chemo day and 2 days later but I have to take mine first thing in the morning... so we are all so different aren’t we ?
I’ve slept on and off for most of the day but feeling ok. Let’s hope it lasts.
hope you’ve had a good day xx
Thanks Angela... I’ve been dozing on and off all day but no bad side effects. Let’s hope it stays like this 🤞🙏🏼😂... thanks for all the info. Hope you’ve had a good day xx
@Teagold Right back at ya with the hugs and I really appreciate your kindness re the awful counsellor comments and Mother’s Day meltdown. As you say we could all write a book about what not to say to someone with BC. I already have ranted in my notebook about friends telling me they have treated themselves to some nice new bras lately (yes seriously). I don’t even know what size to get anymore and if I hear one more comment about new hair products or not knowing what to do with lockdown hair I’ll scream. Such a trauma having to tie it back! Try picking it out the sink in strands and constantly hoovering it up. Honestly sometimes the insensitivity beggars belief!
So sorry about your wee baby that is awful and as you say there should be 3 cards on the mantelpiece just heartbreaking. My mum was my best friend and I still miss her every day but significant dates are harder definitely.
On the subject of Tuc biscuits I got some too on the suggestion of a nurse friend. Been having them with philadelphia cheese and grapes. The saltiness in the crackers encourages me to drink more fluid which is a good thing.
Hope you have all enjoyed your sport today.
@Teagold thank you. Until this cycle, I only took my nausea tabs 1st thing if I 'felt' my tum. I've never felt sick at all on any cycle - I'm lucky that I do have cast iron guts. I am going to take 3 a day as prescribed and told to with reduced steroids.
I've no words to say about your baby as I could never begin to understand. Mother's Day, since when has it come so commercial?, and other family occasions and anniversaries must be difficult for you. I do hope you find solace. 🤗
As an aside, I went ape at a gif doing the rounds on Mother's Day saying thinking of a whole host of types of mothers. This included mums like yourself, ladies who just couldn't have babies, all variations of mothers under the sun and at the end those who choose not to be mothers. That's me. Never wanted any. I'll be honest hubby never did too so that was an added attraction. I let rip about not wanting sympathy for a decision I'd made, sharing badly-conceived content and it being a fab example of victim culture and people trying to feel sorry for and superior to others. See I'm still 😡 about it.
@LottieLaing you can always speak to the pharmacist at your local chemist. Hubby calls his often due to chops and changes in his Crohns regime if he has a question. They are always happy to help and I'm sure they'll be pleased to speak to a chemo lady in need rather than the worried well!
My afternoon/evening of sport awaits. 😁
Ps really helpful thread about meds (whilst I was busy tapping away about something else!!). I’ve got something called domperidone for anti sickness but have only taken twice. Wondering if better to take more regularly to prevent rather than treat.
also just wanted to say although I do snooze through treatments with the anti histamine I’m fine at the end to get home and it doesn’t effect me the rest of the day - didn’t want to worry anyone unnecessarily.
@Kaz11 Just wanted to send you big hugs after the insensitive counsellor exchange - I know a few of us have posted here about things people have said over the past months that have beggared belief, perhaps we should join forces and write a book called “what not to say when someone has cancer”. Also what you said about Mother’s Day, it can be such a difficult day and that often gets lost in all the commercial fuss. I lost my first baby, a little boy, sixteen years ago and so although I’m v lucky now to have my lovely girls Mother’s Day is always still a bittersweet day and a tough reminder that there should be three cards on the mantelpiece.
@Gelbel 👏👏 on getting your final EC done ✅ and hope you’re feeling as ok as poss so far - thanks also for the comments on side effects as it’s SO helpful to hear this especially after my encounter with Nurse Doom last month (I see her every time I go in for treatment and keep my head down hoping she won’t come anywhere near me).
After all my fretting and feeling rubbish my bloods were tip top yesterday - how ironic is that? - so treatment #5 went down smoothly. Just paclitaxel yesterday and no steroids so hoping this week might be better than last. Had a good chat with the dietitian about managing nausea and have bought a load of tuc biscuits which I thought might be good to nibble to keep it at bay. The cold cap is definitely getting colder as the weeks go on as my hair thins but I’ll keep going if I can. I find I tend to snooze through my treatments, must be the anti histamine.
Hope everyone doing ok this morning and that the weekend is as restful and easy on us all as possible.
Re the meds mine are as follows:
-Emend (aprepitant). I get first in hospital on chemo day then have one on next 2 days at home. I am told to take it at exact same time as in hospital which for me was 1pm.
-Granisetron (anti sick) - I take before breakfast and teatime for 5 days
-Metoclopramide (anti sick) - have to take 3 a day for 2 days after chemo. Mine have to be taken 6 hours apart. First one I take before breakfast and I wait for 5 mins after taking Granisetron. Then take around 3pm and 9pm at night. Can take it other days if needed
Dexamethasone (steroid but also has anti sick properties) - take 2 after breakfast and 2 after lunch for 3 days post chemo
Injections Filgastrim- start today for 7 days (I usually take around lunchtime - was told to take at same time each day
I am also taking Omeprazole after breakfast each day for first week after chemo due to indigestion/acid reflux and have started vitamin d3 tablets too
Hope this helps but best to check with nurse/pharmacist if you are unsure as all our diagnoses are different and meds prescribed according to that so what I have could be different to you. Also you get bombarded with so much info your brain is frazzled. I wrote it all down and still messed up after first cycle when I only took one steroid tablet instead of 2 first time round so fell at first hurdle metaphorically speaking! However I called the pharmacy at the hospital for guidance and they were so helpful.
Hi @LottieLaing /Linda for me the steroid effect is whooziness a strange light-headedness sort of like really bad jet-lag with bit of when you've been lying in bed really dunk in the blackhole feeling but without the dizziness. Apologies for assuming you know that feeling! It tends to go a few days after stopping the steroids. Remember, I react badly to stimulants so mine's a probably extreme reaction.
Were you given leaflets about the chemo you're having? If not search on this site for the them. The side effects and precautions will be listed - always good to refer to.
Call your contact number to ask about when to and what combo to take your tablets. Better safe than sorry. My anti-nausea ones are Metoclopramide. I take from the day after chemo as I have a mega dose before the pre-chemo steroids go in.
Hope that helps.
Love AnGELa x
Blimey, that's some day @Kaz11. We're 20 minutes from the hospital- 15 if the lights are all green. Because of that, I go for face to face check-ups with bloods on Tuesdays ahead of Friday appointments. Also means I get to have a little natter with my nurse pal after my bloods - so useful in lockdown. She texted last night to see how I was doing. Subtle convo will be had with indiscreet nurse! Seems she's newly qualified - her brain and common sense aren't though!
Change of counsellor needed I think. Has she had BC? If she had, she'll know it's the belt and braces as we're told it. Surgery gets rid, chemo, rad, hormones etc. makes sure.
Jeez, hope I don't need Piriton or steroids for that matter before Pax, if I have it. Think I'm going to push for it. I hate my hubby's driving - he used to drive for a living and professionally drivers are notoriously bad! And in my new car soon as I'll have her by then. At the moment I drive, park up (onc patients get free parking) and he'll drive me home either after waiting for me or getting a cab when I'm done.
I slept from 22:15 til just gone 2. Then off and on until 4. Downed an indigestion tablet and that was it until 6 when 1 steroid was washed down with an anti-nausea pill. I don't feel too bad at all. Very slightly whoozy but looking back at day 2, cycle 2 notes it's a drop in the ocean.
Food - can't stop eating! Unfortunately spices and cheese are all I really want. Even when the steroid munchies have gone. At the moment I have to have breakfast as I wake up so hungry and if I don't have it I feel 'tummyish'. Of course, early hour steroids means an early morning nibble. I avoided the cough inducing, spray crumbs, all over the bed oat cakes this morning and had one if those little fibre bake bars. Normally I only eat in a 8 hour window from 12:00 to 20:00. Until this week, I'd not put any weight on. It's been carbs central all week and I've packed on 2kg. Need to fix that as I purposely lost just over 3 post surgery. Hubby's lunch treats of egg and spam breadcake (roll, bun, whatever!) is not helping! Once one bit of bread goes down, that's it, I can't stop.
I'm rambling. Sorry.
Right, need to set up 2nd TV in the lounge for the cricket. I'm sports mad. So can't wait to get back to going to watch. I might get in early as I do the social media for my rugby team.
I hope everyone has the weekend they've planned. 🤗
Love AnGELa x
Ladies I’ve been reading about steroids effects and I don’t know what is the difference between them and chemo
🙈.. can someone help me out ? Also
The antisickness meds you get or I do on chemo day and 2days later in tablet form Aprepitant? How long after taking one can you follow up with Domperidone? Does anyone have this combination ? I know it’s 8 hours between the domperidones but nurse said I can take them together but I’m unsure today.
thank you so much... hope you are all coping ok and managing to enjoy the weekend ahead. Much Love.
Thanks so much for that will look it up. The counsellor sessions were just on the phone due to covid but not my best experience as I described.
Thank you for this info much appreciated. As I mentioned I get so much from this forum and all the lovely ladies on it.
Kaz ❤️ spirit and Soul equine therapy has helped plenty of us, it’s run and owned by lady who is a breast cancer survivor herself in Derbyshire, might be worth a look as being in a room with a councillor isn’t what’s always needed for some. We are all unique and find something that helps and works for us individually. Just wanted to share with you if it might be something that could help ❤️ 💕💕✨✨Shi xx
@Gelbel I think they told me my inflations would stop during treatment but only after surgery if I recall. My mastectomy was on 18 December. I only had the expander implant as an option for reconstruction as I didn’t have enough tissue to build anywhere near my original size and I didn’t want to have nothing when I woke up after the op. At my next cycle (first of paclitaxel) in 3 weeks I will be seeing the oncologist again so will ask her what happens with expansions. My next appointment with plastic surgeon is not due until November so that’s a while to wait for anything to get done again. I will also need another procedure to have the port removed that is used to inject into for inflations. Apparently it’s a 20 minute procedure under general anaesthetic.
Funny as you say we are one day apart treatment wise. I am on omeprazole for indigestion/acid reflux. It was bad during the first cycle - thought I was having a heart attack as it caused pain in my chest. However it also adds to the constipation so then need to take lactulose which is vile.
Got my bed linen dried today in the sun but felt tired after making the bed so have just been dozing tonight. I know I will feel worse as the week goes on but by next weekend I should have picked up again based on the last 2 cycles.
My appetite disappears during the first week and I have to force myself to eat as I know I need to keep my strength up. I eat plain foods as anything too spicy or citrusy affects the indigestion. My go to favourite fizzy peach sweeties are a no no at the moment for that reason. I don’t want to tempt fate and make the indigestion worse.
I too had a stinging nose after the “C” part of the EC yesterday.
I am in hospital for the whole day during my cycles due to cold cap. Takes me around 50 minutes to drive to and from the hospital. Appointment was 10am yesterday and got home at 5.45pm so was gubbed. Bloods done on arrival and then need to wait 2 hours for results before I know if cells ok to get treatment. Cold cap on for 30 mins before treatment, during and 90 minutes after although this will reduce to 60 during paclitaxel. I have also been told I will get an antihistamine (piriton) prior to the paclitaxel so will need to get someone to take me to the hospital as the piriton will make me drowsy so I can’t drive. In covid times it means that no one can stay with me so they need to go home after dropping me off and then come back for me which is quite a round trip but it is what it is.
I would have been annoyed too @Gelbel with the wig comments. I had a belter last week. Been speaking to a counsellor at a local cancer charity. To be honest I didn’t think we gelled (it’s my turn to say pardon the pun this time). She did an anxiety and depression questionnaire and despite what I said re no appetite and lack of sleep all being chemo related she seemed determined to fit me into one of these boxes. Anyway she said to me last week when discussing chemo that I needed to look at it that these harsh drugs are preventing me from dying/they are keeping me alive. I tried not to let it get to me but it festered all week so much so I had an awful day on Sunday and was so upset and anxious. It didn’t help being Mother’s Day as I lost my mum several years ago but I know the counsellor’s comments were the catalyst. I had already decided pre that appointment that I was stopping it anyway. When I told her I didn’t want any more sessions she did the questionnaire again 😡. I get far more support from other people and this forum. I told the nurses yesterday about her comments and they were not impressed. Chemo has always been my “belt and braces” as my cancer has been removed which they reassured me of yesterday. Counsellors are supposed to make you feel better not worse!
Anyway hope you all have a good weekend of sports whether it’s the rugby, footie or the gee gees!
Absolutely no ☀️ in Leeds today. Cold too.
Third and final EC done today. 👊 Slight delay getting started and the nurse went so slowly that we (as hubby waited for me because last time was so quick) were there nearly 3 hours. Good news! No nether steroid 'burn' and no nose pain from the C.
Not happy one nurse shouted across the room that my wig looked good. 😡 Will have words.
Aware of my tummy this evening but much later than the evening of #2. Perhaps slow is best - more saline mixed in to help flush it out? Head buzzing a bit and I'm a little whoozy standing up/mooching around. Got Lansoprazole for indigestion/heartburn. Just about to sort bedsides meds and nibbles to take with the steroid.
@carole_balmedie Carole. My surgery was 10 weeks today. Would've done sooner but had seroma and last cycle 'feeling normal' week, it wasn't quite ready.
@Teagold please can we share your friend? 😇 What a lovely thing to do. I'll be honest, it's only the steroids that have affected me on EC. Hopefully one tab twice a day on Saturday to Monday will make it easier. TBH I react badly to co-codoamol and I have to be careful with flu remedies. Very, very few other side effects - bit of a furry tongue for a few days, tiny bit of nausea when I wake up, one tablet sorts me for the day. Apart from the hair (not cold capping), that's all. So you might be too? I assume your dose will be pro-rataed? Mind you the steroid reactions been horrible some days but only a few. The good news is I'm nearly me for the best part of 2 weeks out of the 3.
I hope today's Pax went well.
@Kaz11 that's a blow (pardon the pun) that the expansion has stopped during chemo. Were you aware of that when you discussed it? We certainly learn and become fluent with terms. Funny how you're a day ahead of me for the same treatments.
Right, going to have a elderflower cordial with soda water in a big gin glass packed with ice. I've not had an alcoholic drink for 7 weeks - just don't fancy one.
I hope you are all as comfortable as you can be and any side effects from today's/yesterday's/recent chemo clear up soon. 🤗
Have a fab weekend. Wall to wall rugby for me tomorrow. I may be French tomorrow! And cricket too. #DeepJoy
Love AnGELa x
Glad to hear all good @carole_balmedie ... I was talking to nurse today and she said 4th one I will be in the whole day as after Herceptin I need to stay for about 7 hours to see how I react to it 😳😂... but the next two sessions 5 & 6 will be about hour and a half.
Hope all you lovely ladies have a peaceful weekend. Xx
Afternoon @LottieLaing I’m doing fine thanks, been up to my eyes with work trying to sort everything before going awol for a few days after my 2nd EC yesterday. All went fine, cold capped again, still have my hair but coming out at bottom underneath where the cap didn’t cover. Yes, always preempt sickness by taking meds even if you don’t feel 🤢 I was sleepy yesterday, today I’m good but I kept a diary post 1st EC and I know tomorrow might not be so good, so a lovely Indian carry out tonight 😋
Hello @hopeful1974 and welcome, you are a cycle in front of @LottieLaing and me and are going onto the same regime as me, so I’ll be interested to see how that combination is for side effects, must admit not looking forward to it, but at least it means we are halfway through chemo 👍🏻
You look fab @CrazyCatLady the wig and I agree, a bit of slap always helps, I find I’m really peaky during this!
I’m glad to hear @Gelbel that your prosthetic fitting was a good experience, how long ago did you have your surgery? I don’t have surgery until about 6 weeks after chemo 🤔
Sounds as though you’ve had a rough time @Teagold this week, hopefully starting to come out the other side? Yes the cold caps really need to fit well, I have a big head so an extra large cap with a large cover to keep it tight 🤞🏻
I hope all Feb Chemo starters have a lovely weekend, no ☀️ in the NE of Scotland today, it decided to come out yesterday while I was in hospital for 3 1/2 hours (chemo is only 20 minutes, cold cap is for 2 hours🙈 and the usual faffing about)