Hi everyone, lots of good luck for those of you starting this week and thank you Daisydi for popping in to see us. I have slept most of the past 2 days but feel slightly better this morning. Trying to continue drinking as much as I can. Xx
Hi just popped over from the Feb thread. I had my last chemo 4 weeks ago. I had 3xFEC and 3xT. Just to let you know that I cold capped all the way through and still have a full head of hair. I have shed a bit but you would never know. I have no bald patches. Just make sure the cap is really tight and pulled right down onto your head. Lots of people seem to get bald patches on the top of their head but this is purely because the cap is not pulled down or tight enough. It is uncomfortable but worth it if like me you are terrified of losing your hair. My hair was always soaking wet with loads of conditioner on it. I used the smallest cap and I wouldn't say I had a small head but by doing that it was really tight. Please pop over to the Feb thread if you have any questions. Good luck x
I am starting my chemo this Friday,12th. There is so much to take in and remember, my head is so full of information and I think I am only remembering about a quarter of what Oncologist told me. I am going to try the Cold Cap. I am Triple Negative so chemo and radiotherapy for me. I wish all those starting before me this week much much luck and we will all get through this xx
Than you so much for your encouraging words! How have you been doing so far? I am starting my journey tomorrow, wish me luck! AWW, good luck to you for tomorrow!!! We can do this.
Oh no LMC so sorry you are in hospital. Hope that infection gets sorted soon for you. What an awful time you are having. Thank you Shi will definitely look up the Unicorn! Xx
Lucylump 😁no pink poo 😂🤣😂🤣😂you need to google the unicorn squatting potty 😁😁that’ll make you 🤣😂🤣😂💕✨✨✨Shi xx
in hospital at the moment. I have an infection went to see surgeon on Monday and he operated Tuesday cleaning the implant and removed some puss 🤮 on strong antibiotics at the moment through a IV and 🤞🏼🤞🏼 Seems to be looking a lot better. He wants me to stay in over the weekend as a precaution and hopefully go home Monday with oral antibiotics.
Not what I wanted as it will set chemo back but I definitely need to be well enough to go through chemo anyway so 🤞🏼🙏🏼🤞🏼🙏🏼 Infection free very soon.
Good luck to everyone starting chemo soon and fab news with the side effects not too bad for you
Hi Flower, so pleased you have joined us. Side effects so far are bearable but wee has turned orange which is a bit disconcerting! Wow being in Korea must be an experience. Hope they do give you the anti sickness pills. Will be thinking of you and Aww on Monday and I think Kaytee on Tuesday. LMC hope you are ok too. Xx
Hi AWW and LucyLamp,
I am too ER and Her2 positive and will be on Carboplatin+ Taxetere+ Herceptin for 6 cycles and then only on Herceptin for another 12 cycles. I had a lumpectomy and lymph node removal both sides (yeah, I know, both sides at 39 with no family history), I am stage 2A.
AWW, I will start my first cycle on Monday, July 8th as well. I had my chemo port done yesterday, and it wasn't as painless as I expected it will be but I am happy it is done. I live in Korea working here. The health care is great but they are not a big fan of pain management - way different than in the states or in Europe.
I am pretty anxious about my first chemo session, I hope there will be no allergic reaction and that the side effects will be tolerable.
LucyLump, I hope you are feeling a bit better today.
Feeling not too bad this morning. Ended up being very sick 9.30pm. It comes out pink too like the wee. Then got paranoid about cleaning it up perfectly in case the dog got it! Felt nauseous until about 5.30am probably because I had sicked up the anti-sickness pill earlier. After that though slept till 8.30 and now feeling loads better. Looking forward to seeing if first poo is pink too! Xx Update: disappointingly poo is not pink.
👍Lucy 😘😘now keep the water flowing 😘I was as needle phobic too but soon injecting those jabs alternative sides of my belly button like a trooper, used a antiseptic swab on skin first (just to make sure everything nice and clean and then again after) grab a bit of belly with one hand, stick it in, plunge down and voila done 😁 once you get 1st one done you’ll be pah, easy peats lemon squeeze 😁👍👍💕💕✨✨Shi xx
Glad all is going well for you, hope it continues to go well for you, will be having my first on Monday so it's reassuring to know yours went well.
Glad u have got the first one out of the way and it's not too bad so far.
I hadn't heard about injections! Not looking forward to that :-(
Hope you don't get too many side effects .
Hi Ladies, I am just back home from first chemo! All went well. It was honestly nothing to worry about. It did take 3 hours but the actual process was totally fine. Only thing that bothered me was the package of goodies you get to take home.....anti sickness pills OK, steroids to boost the anti sickness pills too OK.......injections to boost white blood cell production for me to do myself NOT OK. I explained that I was really worried about injecting myself though and they were fine about that and are sending a district nurse out to do it for me. First one tomorrow late afternoon. Feeling good so far. Xx
Hi there, I was a May 2017 chemo starter and did 8 rounds of FEC-T and I still have my bounce so it’s all doable. Keep hydrated and regular temperature checking. Here’s my story which you may find helpful: http://lifeafterlola.com
Best wishes xxx
Few others I checked with my onc with before chemo and told to keep off till after chemo were green tea/matcha powder, turmeric, black cumin seed oil, soft cheeses, no friendly bacteria stuff either, but please speak to your units and get their specialist advise directly ❤️Hope that helps 💕💕✨✨Shi xx
Hi LucyLump, thanks for your kind words, I hope all goes well for you tomorrow, will be thinking about you.
Do let us know how you get on.
Thank you Jencat and thank you for reminding me about the travel sickness bands too. I will put them in my bag before I forget. Xx
Hi everyone, just to add to the foods to avoid, I was told no grapefruit-I think it can interfere with the chemo drugs.
Also, I found wearing travel sickness bands whilst I had chemo and for a few days afterwards helped with sickness-I wasn't sick at all xx
Hi AWW, welcome as well. It is a scary thought but I keep telling myself many people go through this and all the teams helping us know what they are doing. Will be worth it in the end to zap those nasty cells. I am alsoHER2+ and having first of session of FEC-T tomorrow. Xx
Also starting chemo 8th July.
I had right breast mastectomy, ER positive and Her2 positive so will be on FEC-T 6 cycles and Herceptin 12 months.
Feeling anxious at the moment.
Hi Helly, Welcome to our group. My first chemo is tomorrow at 2pm. I am trying not to think about it! I will be having operation later follow by radio or more chemo I think. Xx
I'm going to be joining you on this chemo journey - my first cycle is 10th July.
I had lumpectomy and sentinal node removal on 13th June, grade 3, stage 1 confirmed.
Oncotype score came back at 22, and as I'm 39 there is a clear benefit to chemo, then onto radio and followed up with tamoxifen.
Nice to meet you all
Hi Kaytee, I am guessing that it is to do with risk of food poisoning but could be wrong. No one at the hospital has told me anything to avoid but on some of the other threads people have been given lists. I think pate was on there too. Xx
Just catching up on your posts and I have been making lists of things to get but I hadn't even thought about things to avoid. So apart from blue cheese and Chinese ( why is this?)
Is there anything else to be avoided?
Wow thank you so much everyone. You are all giving me so much hope. MacDonalds, Pizza etc balanced with fruit and vegetables sounds quite doable! Xx
Lucy, I had a McDonalds most weeks after I'd had my line flush-I don't even like them that much normally! x
Hi July team,
I started on 20th June, EC and aside from being quite exhausted days 4 and 5 it hasn't been too bad. I was worried about nausea and taste changes, so every day I am not getting those effects I am celebrating it. I had pizza the other day with parma ham which I ate with pleasure I also had a banana, yoghurt an chocolate smoothie made at home during the weekend - this is from a Macmillan recommended cookbook . So make the most of those domino's -just balance them with broccoli and veggies some other time!
I also have a PICC line and even though it IS there, you can get by.
Big hugs to you all xxx
😁steak and kidney pie, chips and beans every Tuesday and the dominos every Friday, you do what you gotta do to get through chemo 😁 wash all salads and veg though 👍💕💕✨✨Shi xx
Hi Lucy lump, I had dominos mighty meaty stuffed crust every Friday during chemo 👍big massive one and polished the lot off every time 😁
Hi LMC, I am having FEC-T plus Perjeta and Herceptin. Not being able to eat Chinese takeaway is a pain but just think how many we will be owed at the end of this. My daughter is not going to be happy at the reduction in dominoes pizza being delivered to my house either! Xx
Hi Lucy Lump.
Really hope you enjoyed your blue cheese, I’ve read quite a few things we aren’t allowed to eat such as Chinese takeaway, heartbroken about that one 😂
Good luck to you and Kaytee on your first lot of chemo! Which chemo is it you both are having?
Hi Kaytee and LMC88,
So sorry to hear about your infection LMC. We are willing those antibiotics to work for you. I haven't had surgery yet. Am having the chemo first and surgery after that. Kaytee I will be thinking of you on Tuesday. I have spent the last few days rushing round doing everything I can just incase I feel ill and eating everything I won't be able to eat like blue cheese!
Thank you for to reply 😀
hopefully the antibiotics will work overnight and I can carry on with the rest of the treatment as planned. Don’t want to be getting an infection whilst having chemo
Sorry to hear you have an infection.
I had a masectomy and node clearance but my wounds have healed without complications so I can't comment on Infection but I remember my surgeon did say that I had to be completely healed before I started chemo as it will effect how the body can repair.
Hope this helps
Quick question, has anyone already had surgery?
Ive had mastectomy with immediate reconstruction and lymph node removal, however I have an infection ☹️
My surgeon has put me on antibiotics but if the infection doesn’t clear I’m having to go back down to surgery for him to flush it all out and put a drain back in.
I can’t seem to find any threads about something similar to this.
Im worried if I do end up having the surgery my chemo will be delayed until I’m healed.
Thank you for the handy hints and I enjoyed the mountain lion post :-)
Looks like iam starting on Tuesday next week.
Hope your first one goes ok on Thursday xx
Thank you for the reply Susie B it’s good to hear from someone who has had the line fitted. Also the reassurance that I won’t feel it is very comforting ❤️
I’ll have a look online for some covers 😃
I'm from the Feb group and just popped in and seen your post. I had a PICC line put in back in February as that was my oncologist's preferred way. I must admit when I was reading about PICC lines my first thought was I don't think so thank you but I can honestly say you'll be fine with it. The area will be aneathetised first, administered with a needle, but that will be the last time in ages that you will have an injection. The actual proceedure is completely pain free, I promise you. It took me a couple of weeks to get used to my PICC line which I call Klingon and it is a pain that every time I have a shower I have to put a water proof cover over it. The hospital should give you a prescription for one. They're the same as the ones for covering plaster castes. Whilst you are having chemo you won't feel the drugs going in at all. The down side to having a line is having to go to hospital once a week for line care which I'm sure has been explained. You can buy some pretty PICC line covers on line. Personally I found annabanda to be the most reasonably priced. Hope this helps. If you want any help, advice or just a chat you'll find we're a talkative group and someone will always reply to you. Good luck on your journey that none of us ever wanted to be on in the first place. xxxx
Thank you so much Shi and Strawberry this is awesome. Xx
“What’s it like to go through cancer treatment? It’s something like this:
One day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” - and you really appreciate the support, but the mountain lion is still coming.
Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”
As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they’re half grown and only have three legs or whatever, and you think to yourself - why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.
Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You’re not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”
Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “f*ck this mountain, I never wanted to climb it in the first place.”
Just pace yourselves ❤️Focus on ringing those bells in your units (and those of you who don’t have one) we’ll 🛎🛎🛎on here for you. Now kylie gold hot pants on (the fantastic kylie a bc survivor herself) keep 👭👭of each other and you will get each other through safely 👍😁and always a ring your units. If you are on fec the red one will turn your pee pink till you flush it through, don’t 😲. If your pee does start to burn but you don’t have temp, phone the unit you’ll need antibiotics no self medicating during chemo and if you get thrush mouth get them to give you fluconzole don’t get fobbed off with drops 💪💪💪once you get first one out the way you’ll settle into routine and you will all 🥊🥊🥊🤸♂️🤸♂️🤸♂️Kick it’s ass. Try and find mountain lion story on the threads by strawberry, it’s inspirational ❤️💕💕✨✨Shi xx
Thank you so much Shi, that’s really helpful. Will definitely add all these to my list as well. It is so good to hear from people who have done all this before. Xx
Hi LMC88, thank you for joining us too. Hope your PICC line goes ok. I am sure I am not a great patient either and may also faint.....when I took my daughter to A&E with a cracked knee cap she was fine. I was lying on the floor! Still the nurses are well used to these kinds of things happening. I keep telling myself as well that many 1000s of people have done this before me. Gets a bit more scary though the closer it gets to Thursday. More shopping tomorrow including rubber gloves! Never used them before but apparently needed to protect hands when washing up! Will also get big water bottle. That’s a good idea. Read somewhere on here that some people like ice cold water on chemo so planning on freezing it half full the night before and topping it up before I leave. Xx
I too am starting chemo in July. 11th to be precise. I am having PICC line fitted as I am terrible with needles. I am more scared of this than actually going through the chemo at the moment. I’m also scared of feeling the meds go through my body and may faint. I am going to be the nurses nightmare lol.
Thanks for the tips on the shopping list I think I need to start mine and be more prepared. I have bought head scarfs and a huge water bottle but that’s about it.
Hope your meeting goes well with the oncologist goes well Kaytee and big hugs for your first chemo LucyLump
Few quick tips for shopping list for chemo, get some baby wipes and anosol cream and senokot/movicalthe steroids can make you have a bit of botty back up 😳nothing to worry about it’s just you don’t expect it. Oral hygiene is very important, see if they can give you difflam in your ‘goody bag’. Any problems with antisickness meds phone your units, they will tweak meds till they get right combo. I was on akynzeo and metochlopromide and no sickness or appetite loss. Think about sending your hair to little princes trust they make wigs for kids for free with cancer, can make you feel like taking control. Also you ask about a wig voucher at your trusts too also your Macmillan units have lots of preloved wigs too. Drink 2-3 litres of water a day and keep skin moisturised, chemo can dry it out. Hope that helps a bit and know we are all here 👭to help in any way we can. Just always ring your units with any concerns during chemo, they want you to ring them, then they can keep you safe ❤️💕💕✨✨Shi xx
Hi Kaytee, it's good to hear from you. I hope your meeting with oncology on Monday goes OK. It is definitely a bit of a relief to finally know what the treatment is going to be. I am making the most of the last few days before it all starts.
I am also due to start chemo in July. Have first meeting with oncology on Monday.
Obviously not looking forward to starting but like you I am glad to be moving forward.