Day 5 and I feel sick, as though i don't want to move, because it will make me feel worse. Also constant burping! Presumably all normal? Someone tell me this will pass soon. Horrible to feel so pathetic.
Day 20 and I'm back from weekend away at my sisters. Had a very chilled time - walks in the park with the youngest great nephew and niece to feed the ducks. Pottered around some garden centres and actually did some Christmas Shopping!! Everyone has said do something nice when you can - and I can fully recommend it!!
I wore my wig for my sister and her husband and they were surprised at how like my own hair it is - but it did give me a boost to think that if my hair does go awol then it won't be so bad! My hair is shedding and my head is a mixture of itching and fizzing along with a headache so it remains to be seen if cold capping is successful but back on Tuesday for chemo 2!! Must get my bag ready!!
District nurses are in tomorrow for the full monty - PICC line flush, blood tests and dressing changes - once they have been and hubby is home from work we'll do a food shop and hunker down for the next recovery period!!
It took me a while to catch up with everyones threads - you have been busy this weekend!!
Thank you everyone for your lovely comments! I'm amazed at how good it looks so wanted to share it with everyone as I know we are all a bit dubious about wigs.... I got mine from a hairdressers near me called Huttons in Ferndown Dorset but I'm sure other places will sell the Racquel Welch range. Having been looking decidedly ropey for the last few weeks it was so nice to look like me again!
Hope you all have had a good weekend.
Sending love & hugs 💞
Wow, Angie, you look brilliant - positively radiant. I'm at the wig place tomorrow and I hope I come out with something as good as this.
Fairycake, so pleased you managed to get out and have such a lovely time. We have to take these pleasures when we can take them, I feel.
Thank you for your support and all the info Sue (Sus12). I have found a Look Good Feel Good venue close to home and I'll be booking my place just as soon as things start falling out. I have a drawer full of scarves, some going back 20 years or so. I did a bit of tidying up a while back and very nearly chucked them all out. Something stopped me and I'm so glad I still have them all. I think there is something in there for just about every occasion. I've been watching Youtube videos to see how to get the look.
And for everyone who still has to do the wig shopping, please do make sure you get your code from the NHS to get the discount. In my area, it is worth £120, so almost the full price of a reasonable wig.
Sue H.S. - the nausea started when I was walking to the car from the infusion suite and I have had it continually since then. I hate to think what I would have been like without the steroids etc but, to be honest, it hasn't been great with them. It's doable in the morning, but gets worse as the day progresses and is pretty awful if I move about a lot. Yesterday was pretty grim. This is exactly how it was for me during my pregnancies from almost the moment of conception to immediately after I had given birth. The only difference is that I wasn't prepared to take anything for it when pregnant, but I am hoping the doctors have something else in their medicine cabinet they can give me now. I'll be on the phone to them tomorrow morning. It's going to be a very depressing few months if I have to feel like this throughout it (although I appreciate others have much worse things to deal with, so I hope I don't give offence saying that).
I also had a bit of a drama yesterday in that I managed to break a back tooth on some seeded bread. A bit of the side has sheared off exposing the mercury filling. Aaaaggghhh! I'm hoping the dentist will be able to patch it up so that it lasts until I can get it done properly. I'll have to speak to the hospital about that tomorrow too.
Love and strength to you all.
Looking Fabulous Angie, if I saw you in the street/restaurant/anywhere I would have not known that you were wearing a wig ☺️
Can I ask where you got it from?
You look fantastic! An inspiration for those who are feeling apprehensive about wig wearing. Wigs are so good these days.....I realised mine was OK when the nurse doing my pre-cycle 2 blood test asked whether my hair had started coming out yet.....I was bald by the end of cycle 1!!!
Anyone just starting the wig journey, make sure you get your NHS contribution. The wig specialist I was recommended in Buckinghamshire has an arrangement with the NHS and the contribution (about £68 from memory) was automatically deducted from the cost of my chosen wig.
Had an odd good day yesterday so went wig shopping. Have been stuck in my house or in hospital for the last 4 weeks as I have had constant infections since surgery. Next chemo is looming on Friday but I am better prepared for it now knowing how I am going to feel for the week after it, just hoping no more infections! I am so happy with the wig, had a few tears trying on some that just didn't work for me before coming across this one from the Racquel Welch range.... Thank you sue-HS for the link to the look good feel good I have now booked into the next one at my local hospital.
Good Morning everyone,
Fairycake2 - so pleased you made it to the theatre. I really believe that if we're able, and well enough, we should do what we can. So glad you enjoyed it. David Bowie - a legend.
i also had a giggle to myself re the eyebrow drawing Maryminder, I wear glasses (varifocal), and have been filling in my eyebrows and tinting them for years. I found that a x10 magnifying mirror works for me, held up close to my face. Not a pretty sight, but it works! Will be keen to hear how the drop down glasses work.
we did go out for lunch yesterday with friends - coped well, but did find myself listening out for coughs and sneezes!
good luck and hugs to everyone with treatment and scans etc. this coming week.
Brilliant! So pleased to read that you were able to get out for that treat.
Yes, it is quite normal, that when of steroids, we feel a little worse. Just keep on with eating little snacks of biscuits or toast on a very regular basis. I did this about every 2 hours and it did help to keep my stomach in check. It it very likely to help with nausea. And,of course, keep up with the fluid intake!
for those of you, who would like to use Private Messaging - perhaps to support each other with some things, which are easier to chat about 'off forum' or to exchange details of a more personally identifying nature - this links should help you knowing of how to set up private messaging. This is of course, for those, who have, as yet, not discovered the feature
Please always remember - this forum is in the public domain, so we should not share details, which could identify us in 'real life' - i.e. e-mail addresses, Facebook names, full names, doctors names, etc.
Well I made it into London: train, tube, restaurant, theatre. Kept feeling a bit nauseous but coped all right. I think now the steroids have finished i feel sicker.
BUT the play was amazing, very weird (Bowie's last musical, called Lazarus). So definitely worth it - we've got to take these moments when we can.
Feeling pleased with myself .... Went to local pub with hubby for an hour WITH MY WIG ON !!! No one seemed to notice but luckily I didn't see anyone I knew, even so it's given me confidence to do it again. Next chemo is Monday so don't suppose I will be going out again for a while.
We can do this ladies - if you recall yesterday I was sat gently pulling my hair out so what a difference 24 hours makes xxx
nb dread drawing on my eyebrows thank goodness they are still there at the moment !
Decided to have a go at my creating new eyebrows today, only problem is my glasses get in the way and I am as blind as a bat without them, the end result was quite hilarious, so have bought a pair of those magnifying drop down glasses on ebay to see if that helps :
I have already had my hair cut short and noticed today (day 11) that it is now going, I can get around having odd boobs because it is hidden, but my hair gone completley i'm not so sure, I have a wig, scarves and hats but not sure how I will feel stepping out for the first time.
Sue H-S you are so right re emotions, people's natural instinct is to try and make you feel better but
to have someone agree with you when you are saying it sucks and life is crap does help.
Next Thursday I have the scan on my Thyroid, a nodule was picked up on the body scan following my surgery, am trying to tell myself that it's nothing to worry about but it is difficult.
Still ending on a positive note The Seagulls won today so hubby is happy.
Love and Hugs to all
Thank you for the compliment - and not so much of the 'old bird' please, lol.
If you are suffering from sickness now, presuming you have also just come of your steroids - and the 'cocktail' you are already taking - they will need to adjust your accompanying anti-sickness meds again.
Have you tried eating little and often? Ginger biscuits - water biscuits?
If you like ginger, it might also be worth popping onto Holland and Barratt or look on line for Rochester Original Ginger Drink - It is a sipping ginger with quite some kick. So it would cut through your tast chalenges at the moment. It is nearly like taking a sip of whisley, lol. However ginger is supposed to help quite a lot.
If you do go down that route - try 1/2 shot glass in the morning and see whether it helps.
Never be sure you won't rock the 'bald' look - a bit of careful make up does make a huge difference.
On the other hand - if you scroll down the page of this link to a post from Belle - fabulous looks with scarves - https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...
Hope youare starting to feel better real soon.
Most of you seem to be so far ahead of me. I'm on day 4 of chemo. I smelt and tasted the E&C when it went in and I just knew I would suffer badly from sickness. And I am doing, in spite of the Ondansetron, Dexamethasone & Domperidone. Everything tastes horrible already. I felt like this thought my pregnancies, when I felt like I had been poisoned. This time I have!
For those of you yet to start, the chemo session itself is fine - much better than I had feared. Everyone was so lovely and kind. I have a port, which no doubt helped a great deal, and I'm not cold capping. I'm on an accelerated programme - 4 lots of EC at fortnightly intervals and 4 lots of taxol at fortnightly intervals. It's going to come out whatever I do. It's the least of my worries, to be honest.
But I'm a bit of an old bird - a touch younger than you, Sue :). But you rock that baldie look and you don't look anywhere near your age. I'm not going to be able to carry it off like you do.
Anyway, onwards and upwards. Love and strength to you al.
Skye is so right, when she says others, who have not had a cancer diagnosis and chemo, do not really understand. Unfortunately this is something you are likely to come across for the next few months. This is why this forum is so important, as we can communicate with others, who are or have been in that situation.
Whatever your worries, please feel free to share - feel free to moan, cry and be angry - these emotions have to come out, even if it is only in putting them on the forum. I know a real hug is not the same as a virtual one, but it helps to know that you are not on your own and others understand your feelings and frustrations.
I do feel for all of you, who are currently getting your hair cut very short or shaved or at the stage, where it departs for a while. The only comfort I can give is, that getting it shaved or extremely short, is likely to save you from a sore scapl or headaches, when the time comes for it to go. It can be heartbreaking to get used to the way we look with very short or no hair. One of the advantages is that it then shows off oour true facial features - we may love them or hate them. The most noticable thing will be your eyes. So many people commment on that.
It is also right, that we all have our fears of the cancer being elsewhere. Any ache or pain may make us panic and dark thoughts may invade out minds and those dark hours, when we lie awake in our beds and cannot sleep.
I am not sure - but this thought might be of help. As I am now through my active treatment and am, of course, at risk for the cancer coming back, i.e. secondary cancer - the guide is that if you have a pain, which lasts for over 2 weeks and does not go away using painkillers - then one needs to get it checked out. But of course I understand, that until all initial scans are done and the results knows - one does worry and that worry makes things just so much more challenging.
Hoping you all have a good weekend. Rest and be kind to yourself - you deserve it.
Skye, I agree with assaritti, the fear and worry of your first Chemo is worse than the actual event. And for me the worst bit was the first 20 minutes of the cold cap, after that it was a smooth ride. It is the first few days afterwards that you will feel at your worst and the se's kick in.
you girls starting to loose your hair - I'm in the zone now too, but as yet have only noticed my eyebrows itching and a runny nose as I think my nostril hair is disappearing. I did cold cap so am hoping that it will help with my head hair, but I do keep checking it my gently tugging (can't help it) which I'm sure doesn't help.
we can get through this...
hugs to all
Skye, chemo is a breeze, it dont hurt, time goes fast when its being done, dont worry about that, the fear is worse then having it done, the hard part is around 4 days after. you will be given drugs to take home for sickness etc just make sure you take them.
i wake up at 6 every day now even when i go to bed late i wake up same time 😞
my back is sore today and was not yesterday but i didnt feel this lump 😞 i will make sure someone else can lol.
I have had my wig now for 3 weeks its a nice wig i also have hats and scarfs but its just not the same is it. wig makes you feel very hot too.
good luck monday you will be fine honest xxx
Ivebeen awake since 5am - dreadful when you can't sleep.
Its understandable that that you're worried that the cancer has spread - I think that's something we all do - even secretly. I'm sure you'll feel much better when you have your results.
Im starting first Chemo on Monday - dreading it, but anxious to start at the same time. Does that make sense? I tried on wigs for the first time in Thursday and ended up in tears. I think I'll not look in the mirror when Im getting my head shaved - but I'm going to start wearing the wig cap about the house to try and de-sensitive mys of. Don't know if it will work, but it's worth a try! 😀😀
Only other cancer patients understand your fears and worries - even though friends come out with platitudes - they don't really understand. It's a relief to find a quiet space and cry your eyes out from time to time. I know it helps me a lot.
Good luck for your appt on Monday and your bone scan.
Big hugs to us all.
My hair too is coming out in handfuls, my scalp is getting sore now like pins and needles. My hair is about 10 inches long and its heartbreaking seeing a handful of hair in my hand. I will be having it cue very short today as Its heartbreaking seeing it. i know it will all come out and each time i see it i am in tears, so time to cover mirrors and get rid of it all.
I have oncolegy appointment monday and get results of bone scan and full body, i am so worried i have cancer somewhere else and today not sure if i am imagining it but feels like i have a lump in my spine 😞
I hate having cancer as now look at every tiny little sympton as bad 😞 Next chemo is wednesday and dreading it. 😞
hugs ladies every ones keeps saying we can do it and we can we have no choice but i also think we all have a right to feel sorry for ourselfs. our loved ones can try and pick us up but its only us that can, time to get the big girl pants out and carry on xxx
Me too - hair coming out in handfuls if I gently pull it which is developing into a bad habit I just can't seem to leave it alone when I am sat watching the tv in the evening - hubby is in kitchen so have just told him he needs to come & sit down as that will stop me !
I'm on day 18 of first cycle & if I could leave it alone it would probably stay another few days but what's the point of that when next chemo is on Monday & it will come out then for sure anyway. I find it easier to control pulling it out easily myself rather than Hoover it off the pillow or clog the shower up - is it just me ladies ? ( before you say shave it off it doesn't itch or irritate & I couldn't bear to as it is now in a short bob I hate after having about 6/8 inches cut off it since diagnosis).
I've also had a PICC line fitted today for anyone considering it - procedure was painless & so far so good.
Hope everyone is doing ok
Fairycake2 - if you feel like I'd go for it 👍 Enjoy it while you can. I might be wrong, but I think the mid cycle bloods they take (10days), is to check what level your bloods have fallen to.....but ultimately it's up to you and your husband.
thank you Sue HS for your advise re my felt hat😊 I sent a selfie to my daughter (in Oz), and she also told me to go for it if I liked it, so I will👍
Tummy and nausea not so turbulent today so think new meds are kicking in 🙂
Hugs to all
As it was your first chemo- and you may likely be on steroids still by tomorrow - I personally would go for it.
But it has to be your decison. Yes the white blood cell count is now on its way down. The 'nadir', when all it is at its lowest in a specific cycle - is around day 7-10 post treatment.
Further down your cycles such pleasures may not be so advisable, as our blood counts do not recover fully through each cycle - so our immune system becomes increasinly fragile throughout.
Hi everyone, I had my first session of EC yesterday and actually really felt OK afterwards! Ate a couple of fairly small meals prepared by lovely daughter, no nausea as yet. Even went for a walk. So far, so good.
I want to run this by you: my husband bought tickets for us to go and see Lazarus(the musical written by Bowie before he died), months ago, back when I was still a normal person. It's in London so will mean a train, a tube, a restaurant and then sitting in the theatre -I'm nervous about infection, but the nurses says my white cell count will be low in a week, and not yet. Is it worth the risk, do you think? It's on tomorrow.
Thank you for your kind words - I look more confident that I was - trust me, lol. I just got so fed up with the scarves and wig - although my wig is rather nice.
No, I never cold capped - I absolutely hate the cold. It was better for me to use my energy in other ways than having to deal with the cold cap.
Great about the felt hat, made me smile - you like it - you wear it!!!
At tis time it is about you and only you - it does not matter what others think. We spend so much of our lives doing things for others and always taking their thoughts and feelings into account. This is the time where we matter - more than anything else around us.
would just like to echo the other girls and say how fabulous and confident you look, Sue HS. Hope I can pull it off with the same panache when and if my time comes👍 Did you cold cap? We're also a similar age - I'm 58, 59 next year. Went and bought a felt hat today - thought it looked great in the shop, got home and my husband almost laughed!! I still like it. May take a selfie and send it to my daughter☺️
Managed to get some new antiemetics - have now got Ondansetron (which apparently works differently to the metoclopramide I was taking - thank you Flopsie), my nurse told me that it was also probably responsible for the bloating, tummy aches and constant burping I was experiencing. Have had midcylce bloods taken. My nurse has also said that she will request a change in my Cycle 2 antiemetic. Result 👍
I too have a chest expander and have been experiencing pain, still wearing a bra at night but a softer pull on one, have tried massaging while watching TV (thankfully just me and hubby at home) and as you say paracetemol.
Day 10 today and for the first time actually feel slightly human again, although chemo brain is never far away, hair is thinning on top but still looking ok, will practice with hats and scarves at the weekend.
Sue H-S you look amazing and so confident
Hugs and best Wishes Mary xx
Sorry to hear you are so very tired. That can happen. My sleep patterns completely dissapeared through chemo. And some of the tiredness is also the fatigue,which cannot be addressed by sleeping, which can make things worse. Try and rest as much as you can - and the odd walk out in the fresh air might also help.
The breast pain, may in part, be due to the chemo. Chemo affects all fast growing cells in our body - and that would also be affecting the healing of an operation site. I certainly had some, too - and managed it, as best as I could, with paracetomol.
However, it may be an idea to call your breast care nurse or chemo nurse and ask for their suggestions.
Hope it improves.
Thank you for the compliments - I'll be 58 by next time this week, lol! They really are much appreciated.
I hope it does show that a little make up goes a long way. And that there is hope for post chemo.
Although I did not go to one of these - some of you may wish to see whether there is a local course available. It is a great day, where beauty professonals help you understand and to work with make up - and you get a goody bag to take away with you, too. The bits in it are worth about £200!
A session can be a great moral booster, especially if you are struggling with hair los and confidence.
what day of your first cycle of are you on? I cold capped too and am on day 13 and I already look unrecognisable! Like you my hair is wild although not falling out and I look so poorly, too tired for make up today!
Thanks for the advice about the PICC line Sue.
I too have been to chat about a wig and going back next week, also plan on looking today at scarves and hats. I too have been looking out my dangly earrings some from way back, I knew there was a reason I had kept them lol.
Feel okay so far but aware this probably won't last.
I met a young girl yesterday who was having her 5th cycle of chemo and as so excited about next one being her last. I was so happy for her. Hopefully we will all be there soon.
we can do this.
I am so sorry to read that some of you are struggling so much.
As some have said - speak up sooner, rather than later, so your medications can be adjusted - if your side effects are really troublesome.It is important that you discuss your side effects with yur treatment team on a regular basis, to give them the opportunity to adjust your accompanying medications.
Yes, sometimes it is a bit trial and error - and it is unavoidable as we are all so very individual.
Steroids, although sometimes causing issues, are very important with our chemo treatments, as they stop our bodies from rejecting the chemo drugs.Without them we would be so much worse in the first few days post treatment and may even have severe allergic reactions, whilst receiving our treatment.
I understand how distressing it is to lose the hair. I had long hair, too. Bur now, 8 weeks post last chemo treatment, it is growing back with much vigor!
Post chemo 5 8 weeks post last chemo
Sorry to hear you are having such an awful time - but hopefully you are due to see your oncologist soon in preparation for your next chemo session. I had this earlier this week and my oncologist spent most of his time going through my diary saying that's a side effect usually linked to the steroids! It seems the steroids are the bad boys in a lot of what we go through - the chemo effects won't help obviously but he did give me new prescriptions to help next time around. He said better to have things you may need than suffer needlessly because you ae waiting on a prescription.
Day 17 for me and I am cold capping but watching my hair like a hawk and terrified to touch it in case it begins to shed - no idea how I'm going to feel - but I'm away at my sisters this weekend so she'll be there to pick me up off the floor should the worst happen.
Like you I have my wig and a few head bits but I have a session booked at the local hospice for a Headwear session this morning so hopefully I will feel a bit better about the whole head thing later. Our local Hospice has been amazing - they have all sorts of treatments and information sessions - last night we had a two hour session which included a (sitting) Tai Chi session, lots of chat, and they treated us to lovely sarnies, fruit platters, tea, coffee etc. It's so good to chat and compare notes - we are all in the same boat - and at all different stages of treatment but it's the humour of these ladies that is such a boost and the fact they really understand what we are all going through. I hope you have access to something like this - it was my District nurses who put them in touch with me when I was really going through a down patch - so it may be worth asking them if there is anything similar near you.