Thanks ktk. I have had issues from the off and it’s been a challenge to put them behind me. Initial consultation at the breast care unit the consultant quite frankly told me it was a cyst and nothing to worry about, but he supposed I ought to have a ultrasound just to make sure. When I asked if the triple detection method was going to be used as I had read about online he said no need because of my age. Really think everyone should have a leaflet about what to expect at breast clinic. Because at that point Ryan was relieved in what the consultant said and thought I would be ok. If he had not done the ultrasound the cancer could of spread, because it was only the radiography nurse doing ultrasound that said that’s not a cyst it’s a solid mass, she then booked the biopsies and mammogram and said I would be having all 3 that day. She explained that she would do my lump and my lump nodes. The lymph node one she explained would have to be very carefully done as I had a collection of blood vessels very close to the one that was up. That then came back inconclusive. At the 2nd consultation the consultant came out with the opening line, so do you know what it’s is…? Of course not Dr that’s why I’m here! He said lump was cancer and re do under arm. The consultant then did that bursting the blood vessels and leaving the bloody ultrasound in front of my face while nurse was left to put pressure on it and clean up his mess! We complained then that my blood had not been cleaned off the machine properly by the consultant, that another pot was there with someone else’s name on it and that the consultant had to be told to wear gloves and that the local he used wasn’t given enough time to work properly. Surgery day, I was meant to be in at 10am but was told the woman before was having complications and as I had not eaten or drunk from the night before by 3pm I was emotional and begging for a drink. We were kept in a isolation room with no opening windows. Then gynecologist kept asking how long me and Ryan had been trying to conceive for …not reading notes that I have breast cancer and Ryan had previously had a vasectomy but was thinking about reversal as I don’t have children and have always wanted them. 3 times she asked how long we had been trying! It’s been a catastrophe so far a real catalogue of errors xx
Lisa this is awful. As if bc wasn’t bad enough! You really must make an official complaint about your treatment, if only to get it off your chest!? Even without bc you are emotionally vulnerable. I spent 34 years not wanting children then bang! I suddenly thought ‘what if I can’t have them?’ And now I have two. Your body is a ticking clock and I know how you feel. Please do something for your, and Ryan’s sake. Much love xx
Dear Lisa, i hope you’ve managed some sleep. What a cock up the whole process has been for you. PALS is definitely the way to go, my mum in law has had to write to them before and they did respond and helped out. It does seem as if telling us at initial clinic appt that all is benign is standard which is shocking. I was referred with a lump which the consultant examined and then told my OH and I “it’s benign it’s a cyst” just pop off for a mammogram… I skipped of full if relief and left my hubby sitting in another dept only to have mammogram then an ultrasound at which the sonagrapher said “It looks suspicious” then did a biopsy. I then had to sit in the waiting room on my own before being sent back to clinic in tears where OH was happily expecting to pop off home all ok again. We then waited to see same consultant who on seeing me in tears said “oh it wasn’t a cyst then” I said “no” and his retort was “so why are you crying”? Beggars belief doesn’t it. I have been treated well since but it shoulnt be handled like this. Make sure you write down all that happens and keep notes at appt. As the other ladies have said bc is tough but the other issues on top are doubly difficult… we are here for you to let off steam take care xxx
So sorry you’ve experience such rubbish Lisa. Hope you’ve managed some sleep and can think about how to take it forward.
Coming out of the other side of my cycle two fog now. Just sleepiness and lack of concentration fortunately but not welcome nonetheless! Just had a bit of drama with nearly passing out in the chair ? Temp was 37.4 dropping to 37.1 within ten mins. Phoned the helpline who didn’t have a lot of help beyond upping fluids and being careful. Getting a bit anxious about lack of ‘movement’ if you see what I mean, nothing since Thursday ? Wouldn’t normally worry, but everything’s heightened with all this isn’t it!
have good days ladies x
LJ
@LJ The nurses had me drinking 6+ litres of water a day when I was in hospital for febrile neutropenia – and were harassing to drink more, as my BP was low. The heat is tough. Drink loads; it should help with both.
Thank you Kip for confirming what I had thought o be the case. I too was told at the initial consultation that my lump didn’t feel suspicious. My OH and I blithely sailed through the rest of the day totally oblivious right up until the point at which we were led into the room with comfy chairs and tissues! They really should say nothing rather than give false hope.
Jacq x
Hi reddi
Just wondered if your treatment was adjusted after your neutropenia? I’m just home after my second admission, it’s something I really don’t want to repeat next time as I suffer horrible side effects from the antibiotics. They are more unpleasant than the chemo.
Jacq x
Hi ladies, for botty back up while in fec usually start the senior or my civil about 4 days after having chemo, it get everything moving and you’ll be back to normal within a couple of days. Speak to your once about getting lower dosage of chemo, I got put to 80% after 1st one landed me in casa nhs for 6 days. Remember everyone is different and your treatments are tailored to you specifically, so 80% Be another persons 100%. Lisa ??for you beautiful what a shocking experience for you, and utterly unacceptable. Speak to your Bc nurse too and tell them what’s happened and how upsetting it’s been, they are there to support and advise at every step of this journey. ??
Shi xx
Blooming predictive text, sorry ladies it should have read start senikot or movicol 4 days after Chemo and you should be ok after couple of days???Shi xx
Hi ladies, just been forward reading about T part of chemo and scared myself! Must remember that were some horror stories regarding FEC too… still got one of those to get through as yet. Anyone out there had T? Shi did you? I think I am trying to wish away the weeks … 74 days til last one… hopefully.
Has anyone not cold capping still got stubble on head, mine seems to be growing, now worrying chemo out working?
Thank you reddi
All the best for next week
Jacq x
Hi Kip
I’ve still got a good covering of stubble with a few longer hairs coming through but these are not really attached!
As for the T, I’ve had three rounds and so far have found the side effects to be manageable. I have nothing to compare to as I’ve not had FEC. I have had two bouts of neutropenia so I would say check your temp regularly to be on the safe side.
Jacq x
Hi all. Day 4 cycle 2. Not been so bad this time. Up and about more, but very tired!! Went to a fab event organised by SWFFL Life Kitchen cookery demonstration. If you get a chance to go to a Life Kitchen event do go! Inspirational ?.
LJ I take Macrogol to keep me regular. I got terrible constipation last time and ended up in a bad way!
Trying to organise a few days away next week before the schools break up. Xx
Hi ya Kip. Sorry havent been on here lately! Week 5 chemo tomoz, struggling a bit with nauseau at present. Not sure whether to take my anti sickness more regularly i.e every 8 hrs, but leaflet says max 5 days which aint much use when u having chemo every week? Will check with nurse again tomorrow, ive been taking them as and when. How are you and when u up Ipsw hospital again?
Kip, yes I did t too, everyone is different on t, some sail through, others get squinty botty, ie when you need to go you have to get to loo quick… my 1st t went in fine, but on the 2nd one about 29 mins into infusion I suddenly went hot and my chest went tight, I shouted the nurses straight away and they stopped infusion and put a bag of something else through for an hour and then restarted the t at a slower pace and got it all in, but I was ??? good and proper and I thought I’m not having that again, there is an alternative that other ladies like me had after that called abraxane this costs more which is why they start you with t first and no one reacted to the abraxane that I know of, I ended up back in fec for my 6th and was very happy to go back to the comfy armchair of fec. So please don’t google about t, you wil ???yiusekf and it’s just what it is just be aware during infusion and remember ladies dr Chemo is having an extra batman dr who’s inside killing the joker that’s invaded our bodies, keep ???you are all amazing and ?:female_sign:?:female_sign:?:female_sign:?:female_sign:Kicking it’s ass ??shi xx
Hi thanks Shi just having a panic moment there ! Guess just have to wait and see what Dr Batnan brings.
Juju, hi glad you are battling on, it must be tough going weekly… I’m next in on 23rd at 2pm are you there then? I’m doing ok thanks plodding on with chemo boot camp,
Thanks for advice 're stubble heads, another panic moment wondering it’s normal or chemo gone wrong or just plain wishful thinking for hair growth!
Brain in overdrive tonight… must try to switch off
Night night ladies kip xx
kip ??quite alright darling to have ??moments we all have and our Oct 17 thread were on that rapid response phone at the slightest thing we all had bat phones installed that were like the commissionaires phone to batman, just keep focused and looking forward and get your meet up arranged it’ll give you all something to look forward to 
But don’t try the ritz in London, they were not interested in our money when we tried to book there for our afternoon tea??Shi xx
I’m peeing for England. Like you I think it’s the amount I’m drinking. A body can’t hold on to that much water and must get rid I suppose.
Ok. This might be too much info, so don’t read if you don’t want to! I am peeing loads, but it is quite uncomfortable. I am quite sore around my bottom and the pee is irritating. I have tried Sudacrem, but any further advice would be welcome!
Cooler today. Feel a bit nauseous this morning so will take a pill and give it time to work before I get going. Xxx
Sorry, I can’t help there I’m afraid. Would vaseliine help to form a barrier?