❤️Purple world ❤️ get your makeup on if you clipper it off when you are ready to take control❤️ try grade 2 setting ❤️ rock the sinade O’Connor for a bit ❤️❤️❤️👭👭❤️❤️ sounds nuts but it does make you feel back in control, think most of us 😢 when we did it but after thought that was on my terms not BC’s if that makes sense❤️😘💕💕✨✨Shi xx
@purpleworld I took the plunge tonight and shaved my hair off! My first treatment was on 3rd August so it's been nearly 3 weeks. Up till today I'd been noticing a bit more on my comb, however this morning I decided to wash my hair and a lot came out (I had a little bald patch on top!). I didn't let it stop me from going to church but did wear a hat while out walking this afternoon to protect the exposed scalp patch!
I'd already arranged a friend who owns hair clippers to do it for me so she came round tonight. All in all it wasn't as bad as I feared (chocolate may have helped with that!!). She cut it short first and then used the clippers. We had a good time laughing about it all and then I got to try out my wig for the first time.
I'm fortunate to have been almost back to 'normal' health and energy wise this week. 2nd lot of EC for me on Tuesday though and really hoping the headaches won't be as bad this time.
We all knew the hair loss would come. Doesn't mean it won't be emotional or a shock but don't let that stop you from living your life! We can do this 🤗
Hi @MargoB, hi @justine1970 , thank you very much for your messages.
Well I’ve now had my first EC (and zoledronic acid). Not an unpleasant experience, all things considered. A few hours in a comfy chair with people being nice to me, and providing tea and biscuits. I’d already had a PICC line inserted so didn’t even need any new holes poking in me.
I tried the cold cap so let’s see how that works. I had 30 seconds of “ooh that’s nice and cooling”, followed by about 6 minutes of “ow my head really hurts, I’m not sure I can cope with this” but by 10 minutes in it was manageable, and just got easier from then on.
So now it’s just the side effects to look forward to 😬, and trying to remember what pills and injections to take on which days.
Best of luck for Monday Margo, hope all goes well and your hospital offers a decent selection of biscuits!
Same here the process from diagnosis to this point has been going on since April including a lot of waiting and I have returned to work for 4 weeks so life has gone back to normal - I start on monday with EC and then T so back on the roller coaster
Hope it goes well and let me know as it looks like we have the same regime
Good luck @Sephie
I found it much less stressful than expected.
Take a book/phone to keep you busy.
They told me 2 litres over 24hours - I think I managed more. I’ve felt much better today so am making sure I’m always toping up my glass.
I start chemo tomorrow, 4 rounds of EC at three weekly intervals, then paclitaxel. I can’t exactly say I’m looking forward to it, but the process of diagnosis and surgery has taken many months so it’s a relief to be moving forward.
best wishes and good luck to everyone else on the journey xx
Thank you for that information, I have been really thirsty but havent been so good at drinking the water today. Did they say how much we should drink per day?
You can stay in this group now you have started here. Yes I totally understand that the delay is stressful, they just have to be super careful though dont they to make sure you are getting the right treatment.
Use these extra 2 weeks to visit family and friends, sort out lots of batch cooking and things that you may have not been able to do whilst having your treatment.
Hope you're all coping. I had my pre-chemo appointment with my oncology consultant this morning, only to be told that there is a slight problem with my echocardiogram I had on Tues. I'm supposed to be getting Herceptin with the other drugs, so now I have to go for more tests to find out whether I can have Herceptin or not and the consultant has put back my chemo for a couple of weeks. I'm glad they are being thorough, but now I'm worrying about my heart as well as breast cancer. I'm feeling very emotional. I was building up to the chemo on Monday and now that's not happening, I'm all over the place. Plus I suppose I'll have to change to the Sep chemo starters group now! I know in the scheme of things I'm better off than a lot of people, but today feels rubbish. Sorry to off load on you all, but I know you will understand, and I just needed to vent.
Take care everyone xx
Amazing! Well done for both working AND sloe picking 👏🏻 Are they to be turned into end of chemo celebratory gin? 😂
Hope you’re all ok! Just wanted to remind you all to drink, drink, drink …(plenty of water!!). I had my first cycle on the 9th and was feeling quite chuffed that I wasn’t feeling too bad. Early hours of day 8 and I woke up with sickness - I ended up having to call 111 who sent a doctor to give me an anti sickness injection. Twenty four hours later I woke up to lower back and leg pain/spasms - the hospital diagnosed that I was dehydrated and prescribed meds and LOTS of water- and warned me that I’d have to be admitted for IV fluids if it didn’t get sorted.
Woke this morning feeling much better (and slept through for the first time since my first cycle).
I’ve filled up a container with water to drink from so I can monitor my intake throughout the day!
Take care everyone and happy drinking (and peeing!!!) 😂
so my first chemo day was yesterday…I had carboplatin/plaxi and feel ok! The thought was definitely worse than the treatment.
Broken sleep but I worked today for 6 hours from home and went sloe picking.
Good luck all on your first one.
Re being on your own - if you can make sure you have some easy access food options to hand. Proper meals that you can just heat up - no prep. From about Day 3 to Day 5 I think I would’ve struggled to eat healthily. No energy and felt queasy so actually cooking something would’ve been a struggle I think. I’ve since done a bit of prep and my freezer is wondering what’s going on 😂 It makes me feel a bit less anxious knowing I can just grab something and heat it up. Although I did have a Pot Noodle the other night 🙈
Sending love. Sarah xx
@ali 3.141592 Love this brutally honest account of your day. Made me smile too. The greasy hair got me. I’ve washed mine one since my treatment day. When I look in the mirror (not often) I don’t recognise it as being my hair! The greasiness has actually made it silky smooth to brush through though so every cloud 😂
I’ve had one round of chemo. First of 4. I used the cold cap and I found it not to be half as bad as I was dreading. Yes it’s cold! But I was expecting to be sat shivering whilst turning into an icicle 😂 I didn’t shiver once! It will prolong your treatment time - mainly after. They put mine on whilst I was having pre-meds etc so didn’t effect time before. Time after depends on what drugs you have I’m lead to believe - I had to have mine on for 90 mins after. By then though I wasn’t really aware I was wearing it 👍🏻
Thing is … You have no idea if it’ll work or not. Hair loss occurs around Day 17 apparently. I’m currently Day 12 so still have my hair. If you’re considering it, my advice would be to give it a go. You don’t have to commit once it’s on. Nurse can remove it at any time. You might find it ok.
I’ve included a photo. Didn’t know we could do this 👏🏻😂💓
Sending love Sarah xxx
Im starting on Friday. Wah.....
Was keen to try the cold cap but reading through the booklet I’m beginning to think it’s not worth the hassle and sounds blooming awful. Anyone else going to give it a try?
Keep in touch
@ali 3.141592 Thankyou for your reply.
Maybe it shouldnt but your reply made me smile. I imagine I will be exactly the same. I am 99% absolutely fine, but some days I cry over nothing and 5 minutes later I am totally fine. I wonder how I will be when it all actually starts....
Well, I am HR at my company so I will just do as I please Haha! I work for a really close friends company so I know there will be no issue but I dont want to seem like I am taking advantage, and tbh I need the money, even though I really do think they would still pay me, if that makes sense.
I havent 'come out' yet either really. People at work know because of the million appointments I've had but not many other - I feel like once people know thats all you become, and I dont want that.
I'll bear in mind about the pharmacy - I never really anticipated all of the pills etc. Think I'm a little naive about it all - I'm kind of a 'need to know' person - cross that bridge etc etc haha
Really do think I will find solice in you guys on here though - I dont like to burdon people with my worries really.
Hope you're having a good day today - thanks for replying again xxxxx
@Mel1978 oh goodness! That is a long wait, well done for getting through that, I completely understand the constant angst about it spreading. Still worrying about that myself even though I’m now in treatment. I definitely remember the “it doesn’t work like that” conversation!! So far since meeting oncology things seem to have sped up immensely and that dreaded hanging around now has a definite target.
As for work I’m trying to walk that line at the moment. I’m able to work from home which helps (upside of pandemic) but it is taking each day one at a time. Yesterday (day 6) I managed a full work day but Friday (day 3) I had to take off due to crashing fatigue. Keeping a diary to help plan for the next cycle. I found talking to my HR person and boss very positive, told them my objective was to work because it’d stop me sitting around in an anxiety well and they’ve been super supportive. My oncologist says plenty of people carry on working but it is all down to what symptoms you get, your job and how you feel.
I’d suggest making friends with your nearest pharmacy and find out if they have any delivery services you can take advantage of. So far I’ve had to send my husband there 3-4 times in the space of a week for stuff to help.
As for a stellar example of coping/not coping:
Today for me has mostly been a snotty mess. I woke up with a terrible sore throat and mouth and called my team. Sobbed on the phone at them for wasting their time was told it was the right thing to do then sobbed more about being so silly to start crying. Agonised over whether to wear scarf to my first meeting of the day since my hair is a greasy miserable mess and my scalp is itching madly. But the person I was meeting doesn’t know and I haven’t publicly outed myself with cancer yet. Held my nerve with the scarf till I was about to turn on webcam and took it back off. Spent whole meeting thinking I was going to throw up and just blindly nodded through. Hung up and burst back into tears. Managed an anti nausea tablet and couple of ginger biscuits.
Treatment team called back to say they’d decided to prescribe me mouthwash and the GP would call me about the prescription. Put phone down on them and was instantly called by a GP nurse asking where to send prescription. Turns out no pharmacy in our town stocks the stuff so had to get one to order it. Ate some lunch and had another little cry about everything being awful today which triggered a small nosebleed. Husband is utterly shell shocked and 7 year old keeps giving me toys to hug.
After some lunch and some quiet time away from everything feeling a bit better and beginning to see the funny side of things. So it really is one day or hour at a time. It is okay to go through bits of not coping.
Reading you're messages makes me feel really emotional. You all sound like you are coping amazingly which is so good to read.
I was diagnosed a couple of months ago and have my 1st oncology appointment on Thursday. I have no idea what to expect or what treatment I will be having yet.
I found the 'lump' in May and this just seems like such a long wait to start anything. I worry that altho they are confident it hasn't spread (They did think it had to my liver after a PET scan, but the ultrasound showed nothing, so fingers crossed) I worry all the waiting around that it might have now. Probably just being irrational as I get told 'it doesn't work like that' haha.
I also live on my own, like a few of you lovely ladies, and worry how I will be. My mum doesnt drive and I'm not sure how I would like it her staying anyway (that sounds awful I know).
I was also hoping to carry on working if possible just because of money really. Do any of you think you would be able to?
Think I'm just panicking a little now its getting closer - I've been so positive until now.
Sorry for the brain dump! hahaha
Thinking of you. The build up is far worse than the treatment! Hopefully you are there now and are slightly less anxious. I’m sure the team looking after you will be amazing and put you at ease.
You will be ok. I was dreading it as I’m sure everyone does! But my first round has been ok so far 🤞🏻 Take one day at a time. Listen to your body and make sure you reach out. Don’t keep things in if you’re worried or feel ill. Phone your nurses and they will help you.
Sending a huge hug. You’ve totally go this 👊🏻💗
Justine ❤️ Remember to drink lots of water after helps flush things through ❤️ Step by step and you can tick one off, keep focused 👭❤️💕💕✨✨Shi xx
Yes my appetite has altered. I’m snacking far more. Always seem to be a bit peckish.
Other than that I feel ok. Could headaches be dehydration do you think? I def think I feel more dehydrated. I’m not a massive water guzzler by nature and am really having to force myself to drink more.
My tummy has been the opposite to yours! I phoned nurses yesterday as hadn’t been for 5 days 😳 Lovely nurse initially said she thought I’d need to be checked over. A&E on a Sunday 😩 However, she then called the on-call registrar and he said that as I was totally fine otherwise it could wait until clinic today 🥲 However, I have since been 👏🏻👏🏻 Hoping they won’t want me in now but of course will go if they do 💗
Hope everyone else is OK. Sending love and hugs and positive thoughts to those who start chemo this week 🥰🥰
purple world ❤️Please phone your team and check all ok, you might be getting to nadir part of your cycle and you need to be extra vigilant in case of infection, please just check with them so they can keep you safe through chemo ❤️ 💕💕✨✨Shi xx
Hi all hope you’re all doing ok.
Had my first cycle a week ago and wanted to ask if anyone else’s appetite has increased - seem to need to eat loads otherwise I start to feel shaky and nauseous. Also had a few days of tummy issues - gassy stomach and loose bowels (sorry TMI!!). Wake up every morning with a headache (not really bad but enough to take a paracetamol for) and this might come and go for the day. I haven’t rung my team yet - may do so today. How’s everyone else doing?
Love and hugs xx
Justine1970 ❤️ Think everyone goes through this phase it’s part of the journey, try thinking of it like going into chrysalis for a bit and emerging as beautiful butterfly when treatments finished ❤️ Step by step you are always you and amazing, just sometime you don’t recognise the person looking back at you in mirror, but look deep into your eyes when you look, you are there and all the amazing things you are are still there too, it try’s to take your joy, don’t let it, because we are all greater than it and together 👭 step by step you get each other through ❤️💕💕✨✨Shi xx
So day 3 and my energy levels dropped like a stone. First part of the day in hospital getting my missing jab and the other half in bed recovering from doing all the driving around.
Cancer nurse top tip for the weird taste was to try pineapple 🍍 juice. Not sure if the half a glass of Lilt worked (the closest thing to pineapple we could find in the house) but dinner tasted amazing!
I absolutely know what you mean about this being your life, I too have just said the same thing to my sister, I live on my own but before this I was working in Central London, had a nice social life and saw my friends regularly. Now I know that wont happen for a long time and I just cant see the light at the end of the tunnel, so scared of losing my identity. Feeling quite emotional today.
My tastebuds don’t appear to have changed at all yet. I’ve stayed away from any alcohol though as the thought of a mini wine head whilst going through this does not appeal 😩
Is it recommended that we stay away from take aways? I guess that could make sense due to food poisoning maybe?
I contacted my oncologist today to ask about swimming. I was going 3/4 times a week prior to my operation but scar took a while to heal so wasn’t able to start back prior to chemo. I miss it 😢 but the answer was no swimming unfortunately. Makes sense though eh because of immune system and germs. I also have a hot tub - can’t use that either even though only me in it. Roll on end of treatment. I presume I will have to wait until after radio too as skin may be sore and cracked.
I still can’t get my head around the fact this is my life currently. Less than 4 months ago I was totally oblivious to what was about to come 🤷♀️ But much rather be doing all this and getting better than not knowing and it getting worse.
Love Sarah xxxx
Yes I think we are all having different regimes and different types of drug but all going for the same result.
Well done to you ladies who have already started, I will be joining you on Tuesday. I have my pre chemo chat today which I have only just remembered I am having! My brain is mushy already!
Hope you all have a nice weekend. I am having my last chinese takeaway and prosecco Saturday night as I guess I wont be able to have these when I start treatment, or more importantly fancy them!
Many thanks for your reply .. my Chemo has been delayed by a week and I start on 23rd .. I have been told I can take someone with me for the first session but not after that.
I'm very nervous about having the chemo .. seeing the posts on here is helpful thou as so far no really bad side effects I having 18 weeks, 3 cycles of EC 3 weeks apart then 9 cycles of T 1 week apart - everyone seems to have a different regime and different drugs !
Have my pre-chemo appointment this week if anyone has any advice on things I should ask
Thanks for the positive thoughts. It went really well I think. I reacted to the docetaxal but they fixed it quickly and after an hours break + massive dose of piriton we were good to go again.
I have to go back for the Phesgo tomorrow since they had an issue with drawing it up on the day. But I’m way less anxious now.
After effects haven’t been bad yet, just a weird taste and flushed cheeks. Got out for a gentle walk and managing to do some work. Suspect that’ll hit harder once the boat load of steroids wear off.
Wishing everyone the best, the nurses are definitely some of my new favourite humans, they’re so patient and kind.
I'm reading your messages, thanks Justine1970, and glad that you seem to be doing ok. I'm in that waiting stage, but it will start to change next week with my pre-chemo appointments, echocardiogram etc, so no doubt I'll be joining in with more detailed posts later in the month.
I just wanted you to know I'm thinking of you all and sending you lots of positive thoughts and hugs.
We can do this
Love Tizzy xx
I hope you are all doing ok?
So … Day 6 for me and I feel ok 🙏🏻 Had a shower, washed my hair - haven’t washed it since Friday. Not 100% sure why 🤦🏼♀️ Want to cause it as least stress as possible I think. Just combed it through. No hair dryer or anything. Doesn’t seem to be coming out yet but it’s still really early days. Day 14 onwards apparently.
My Mum went home this morning so I was back in charge of my sons. They are pretty self sufficient though thank goodness. I did cook us all dinner though so gave myself a pat on the back 👊🏻
Feel a bit tired now so am gonna head to bed early. Still not sleeping well at all. Really bad night sweats. Yuk 🤢 The steroids stopped on Monday morning. Really would like a decent nights sleep soon.
Injections will finish tomorrow evening then that’s all the prescribed drugs finished. They gave me some other anti-sickness but to take only if I need to.
Sending a huge hug to you all. We’ve totally got this August Ladies 💗👊🏻💗
Touch wood I’ve not had any tingles/itchy/burny palms and soles since Day 2. I was worried it would get worse but thankfully it seems to have stopped.
It has been amazing having my Mum with me. I think I would’ve struggled without her. Emotionally too. I have many friends that have offered to help but I didn’t feel I wanted to be around anyone really. She is heading home today though. I am feeling that I will now be ok to be on own or ask friends for some help if needed.
I’m in Brighton and my parents are in Essex. So not too far. I’m a bit worried incase I get an infection - nothing to say I will though 😳 It’s just all the unknown. Mum will head back if needs be. I’m gonna go and stay with them for a few days after the next round. Change of scenery 😂
I’m feeling ok today. Not 100% for sure. But I really do think things could be worse so I’m feeling thankful this morning.
Sending love xxx
Hi all - hope you are all keeping well!!
Regarding feeling wired in the night I was advised by my nurse to take the steroid before 5pm to try to avoid this. Might help, but please check with your medical professional as we might all be on something different and I don’t want to give the wrong advice.
Love Sarah 😊
Hope you are all ok!
How are you feeling now? Have you spoken to the nurses about the sore skin and the fluid retention? Hopefully that will go down? Wired in the middle of the night isnt the best is it, you need that in the day to make yourself go for a long walk!
I hope you are still feeling ok and are able to function still! How is your peripheral neuropathy?
Are you finding it a help having your mum staying? I live on my own and have my mum coming to stay after my first cycle as I dont know what to expect and am anxious about feeling unwell and alone.
I hope you are feeling ok too, shame about the cold cap but understandable with migraines. I have decided not to try this and have bought a wig!
Good luck tomorrow.
Hi, I have been told you cant take anybody in with you but there are a lot of people to chat to there. I am going to take a book and my phone to chat to friends on whatsapp during the treatment.
Hi Tizzy, I am having the full works too, 19 weeks, the first week is carbo/plax? then the second and third plax and so on. I am also doing a trial so am taking 2 chemo pills a day on days 3-12 for the whole time I think. I think it will be a bumper ride!
I'm doing OK. The weekend was strange. It felt like it was on go slow. I had a sore stomach, but sometimes couldn't decide if it was nausea or hunger. I was wide awake and wired in the middle of the night - which I guess is the steroids. It was very up and down. Each phase only seems to last a few hours. I was all over the place.
Friday was my first chemo (EC), and now it Tuesday I'm feeling much better, have taken all the drugs I was given. I have put on 3 kgs, think that is all the fluid retention, my calves were puffed up yesterday.
Last night, new side effect, my skin is super tender, when I lay in bed felt like I was lying on a bed of nails. Still sore today. Think that is the injection for the white blood cells doing its thing.
Otherwise, actually feeling OK.
Hope you are OK too - take care of you!
Hi to everyone!
So glad to have found this thread, I start my treatment next week, it is weekly for 19 weeks, bumper one every 3 weeks.
I am following this for tips!
Hope you all stay feeling ok and thank you for posting and helping.
Yaay you have your first one done 👏🏻👏🏻
I was/am exactly the same as you. Most of my time is currently spent wondering what is going to occur next to my body 🙄
So far though I think it has been ok. Clearly I have nothing to compare it to though! I’ve not been sick. Or felt sick. But is that the drugs helping me?!?! I shall find out soon enough once they’re out of my system! I’m trying to work with the idea that the drugs have helped me through the worst few days 🤞🏻🤞🏻 And that there is nothing worse to come.
I’ll keep you posted …
Sending love. Sarah xxx
Hope you are all keeping well. So I’m back home from my first session and all went ok. I tried the cold cap but due to suffering from migraines I could only tolerate it for a couple of minutes before I could feel one starting - so it was whipped off very quickly!! Gutted as I was hoping it may give me a chance of keeping my hair!! So now I’m sat at home wondering how I’m feeling/what to expect and making sure I know when I’m taking the cocktail of drugs that I was sent home with.
Take care everyone
How are you doing? I’m finding it all really strange. I don’t feel too bad I don’t think?!? I don’t feel great but I’ve not been sick or felt sick yet!
Loads of tummy cramps though! Am taking laxatives as of last night. Oh the joy 😂🙄
Steroids and anti-sickness tablets ended this morning. Wondering if they may have carried me through the worst 🙏🏻 Or if all hell is about to break lose once they are out of my system 🤦🏼♀️
Tummy injection was ok I numbed tummy with ice before I did it. Didn’t feel a thing 👏🏻👏🏻👏🏻
Hoping you are doing ok. Love Sarah xx
❤️Glad you checked with your unit ❤️ one that a lot of us used when the chemo dried out hands and feet was udderly smooth with extra urea which we all got off Amazon 😘 you must keep your team advised on your hands and feet they will tailor your chemo specifically to you do you don’t get nerve damage ❤️ step by step 👭 you will get each other through and be cheering each other in as you all finish chemo 👭 dig in, focus, look forward, it’s an extra doctor on the inside giving it a good 🥊🥊🥊 for you ❤️ treat yourselves after each treatment, book on the look good feel better with your local Macmillan, great tips on how to do makeup and you get free goody bag too 😁 💕💕✨✨Shi xx