Nanna j it’s perfectly ok to feel like that, remember you are in control even if you don’t feel like you are, you and everyone else on these threads are ???and beautiful and amazing, always remember to ring your rapid response hotlines even if you think it’s nothing, they would rather you did to keep you all safe and you will be. We’ve got the tug o war rope tied good and strong to the rest of the bccf threads and we’ve got hold of you all and you all will find such ???from eachvother and lots of 
Too kc72 you can dip in and out as much or as little as you need these threads are loving and supportive. Also there is the bccf someone like me line if any of you need to speak to anyone. If your antisickness meds’ don’t work ring the rapid response and always go in when seeungbin with your list of antisickness meds, difflam for mouth and if you get thrush mouth get fluconzole not the drops from your onc, drink 2-3 l a day flush things through if you are having fec the f will turn your pee red for a bit after ??
Shi xx
Typo should have said go into onc with list for goody bag ?sorry ??Shi xx
Had pre-chemo chat today and got my hair cut - now shorter than my husband’s! Tomorrow go for ECHO then first FEC. Am hoping I will be up to going out for Xmas lunch…
Marykamulle sorry your rapid response team treated you with such a blasé response, I can say from my experience my trusts rapid response did not take such a blasé attitude and took exceptional care of me. Ladies please keep safe, my pee burned a week after 1st chemo, I didn’t have a temperature but phoned rapid response to be on safe side, I had urine infection, was neutrapaenic and ended up in casa nhs for 6 days on drip, I am not telling you to scare you but to hopefully help keep you safe on this journey beautiful ladies, it’s all about navigating chemo safely and I know you all will ??Shi xx
Had first chemo onthe 3rd December. My hair is now beginning to fall out. Having it cut shorter on Friday. My scalp feels very tender. Anyone else experienced this?
Hi @angelblue I’m from the June 2018 starters and thought I’d pop in. Sorry for such a long post – I’d meant it to be brief! ? (Not sure if that’s the right emoji. *embarrassment* ×2)
I suspect the hotline team and on-call oncololgist may have been reticent to test your blood early in the cycle as (I believe) the protocol is to give a blood transfusion if your red blood cells or platelets have not recovered to a certain level by week 3. They much prefer to give your body time to replenish these factors on their own, both because it’s better for your health and because blood suitable for transfusion is a precious resource. They want you to be safe but also to avoid unnecessary overtreatment. However, I am not a doctor, so I can’t be quoted as an authority on this.
At the same time, they’re doing a terrible job of communicating with you! That is a shame – and not like the experience I had or that Shi or others have reported. Maybe it’s the stress of the season getting to everyone? Hospitals do tend to be understaffed at this time of the year. That’s no excuse for how they handled your very real and legitimate concerns, however.
I’d suggest having a frank and open conversation with your oncologist at your next appointment – ask why your bleeding doesn’t worry her/him (though maybe it does, even if it didn’t worry the on-call onco), explain what worries you about it (anemia, fatigue, palpitations, delayed treatment, etc.), note the large clots you’re having, and ask if there is anything you can or should do to mitigate problems. And if you want to, also mention that you felt brushed off when you raised your concerns with the hotline staff on Day X of your Y cycle – it might then allow her/him to give you some context. Or it might push them to do some extra training with the hotline team…
Finally, I know the thought of having a cycle of chemotherapy delayed is upsetting, but it may happen at some point. ‘The best laid schemes o’ mice an’ men…’ and all that. After my 3rd cycle of FEC, I’d asked to move my usual Friday infusion out to the Monday, as my sister was visiting from the US and I hadn’t seen her in 2 years; every day was precious. On Monday I showed up and learned my liver enzymes were elevated – 7 times normal. No chemo for me until they fell. I’d had some cheeky half pints of beer while my sister was in town, but not much more than I usually allowed myself in week 3. But I’d also been on an antibiotic before that for an inflammation in my cannula vein, and probably got dehydrated during some hikes in the Wye valley, and the chemo itself hits the liver. Blood test after blood test that week, my enzymes were still too high. And the only remedy was to wait for my liver to repair itself. I was gutted. I had my whole diary mapped out for my remaining cycles, my likely surgery window, my work deadlines, and now everything was in limbo – or worse, chaos. I didn’t get good blood results for 2 weeks. I was ecstatic when I finally got to get another cannula. Oddest joy ever. And then it was back to the usual dance with the side effects.
Another on my thread had to be delayed a few times due to a strong response on her hands and feet to the taxanes. There are lots of stories like this around the forums.
It happens sometimes. And it will feel like a punch to the gut if it does. And then you recalibrate to the new normal and keep fighting. ?
Good luck for your next cycle – may your bloods be good, and if not, may they recover swiftly. ?
Aha! I was too slow typing on my phone – I see that transfusion would be your remedy, should you be anemic in week 3. The main thing is that letting the body recover on its own, even if it delays chemo a bit, seems to be preferred – except in cases of severe neutropenia, where the body is susceptible to life-threatening infection. From what I understand, the GCSF injections and antibiotics and isolation room stays are prescribed specifically to keep us safe rather than to keep us on our chemo cycle schedules.
Ladies raise the ‘level’ of care with your once and pals departments. That is utterly unacceptable. I am sorry you’ve both had these experiences and can 100% say you should not be having these blasé responses. In future get names and make notes of dates and times so those who are behaving in this unacceptable manner can be held to account. ???Shi xx
After one cycle of EC my hair has nearly all gone. Been to hairdressers and had it cut really short. May go back next week and have it shaved off.
Well - have done first session of FEC - on Thursday. The session itself was fine - just felt like I had a foggy head afterwards but within about 2 hours of getting home I felt really nauseous and tired. Couldn’t move without feeling like I was going to throw up. Friday was a bit better and today I’ve just been quite slow. In view of what they are pumping into us I wouldn’t expect to get away without any side effects but it’s still all quite miserable. Heyho - 1 down, I guess.
Marykamill, I echo what waging has said no chances with poss infections, rapid response numbers and a&E immediately with yours cards that you should all have been given by your nhs units and told to show them at a&E because you need to be seen and dealt with ASAP not plonked in a 4 hour que. temps over 38 and below 35 I think it was when I had chemo that you need to be ringing about and washing top advice from your team ref taking temp prior to paracetamol which is good to hear ??Shi xx
Sorry waging and washing should say wahini my predictive text changed you name, so sorry ???Shi xx
Just saying a quick “hello” on this thread. I had my first round of Taxol on the 18th. It should be weekly x9 (then fortnightly EC x4) but Christmas and New Year will change things around a little.
I had to call my helpline after 24 hours when my temperature spiked. Spent the night in A & E but all fine.
The next day, I found a new and interesting lump next to the existing lump… I’m now on antibiotics for an abcsess.
Apart from that, my only real problem is tiredness. I’m so tired I can barely lift a cup of tea to my mouth.
ajorchid, please just ring your helpline to check all ok ??keep safe. It’s usual to feel tired on the chemo but if you’ve barely strength to lift a cup then please check it out you are getting close to the nadir bit in the cycle where immune system is at it lowest, so please darling keep safe ??Shi xx
Morning and Merry Christmas ?
Commenced chemo yesterday and despite a slight issue with finding a vein (thinking they were dodging the needle!) i found it a reasonably relaxed experience.
Returned home to a relaxing afternoon lounging on the sofa in my PJ’s in anticipation of side effects and this is where the fun begins, is that a metallic taste in my mouth? Errm no! Did i feel a bit nauseas then? Errm no, just hunger, eat! And so on.
Oh well, we will see what today brings x
managed to go out for Xmas dinner yesterday, was lovely! But soooo tired, spent the rest of the last 2 days in bed. Apart from that chemo side effects OK so far, but only up to day 7.
Hope everyone else had as good a time as possible
Ajorchid ??glad all ok ?break it down into 3 week cycles, look at the bell in your unit and every chemo tell it you’ll be ringing the clanger off it soon it helps focus knowing each time you are getting closer to ???it. Get yourself special outfit for the event too, lots of us did and our jellytot topped hers off with glorious bright pink wig too (us oct17 thread were ??? crazzzeeee) ??blamed it all in the steroids as we bounced off the walls at all hours, regularly ???laughing ourselves silly together at 2,3 and 4am which is the Beaty these threads give you, you are never alone on this journey, always ???friends around ???Shi xx
Hi everyone
I thought I was starting chemo in January, but I’m now a late December starter. First chemo on the 28th. 3X FEC 3XT. I’m really quite anxious and really not sure what to expect. Any tips anyone ??? Many thanks ?
Hi I’m hopefully starting chemo soon , had surgery and getting lymph node clearance results today , I’m not used to using this forum but it helps but keep finding old posts XX
Hi rapunzel, akynzeo and metrochlopromide worked very well for me during chemo, no sickness, no loss of taste buds, your team will try you on various meds till they find combination that works for you, also girls on my thread last year used sea bands on their wrists which helped them. Think the chemo regimes are tailored specifically for each individual as are the doses which I think is why everyone ends up on different plans, your onc will be happy to answer anything for you ??Shi xx