I’ve got it in my mouth, but not my throat. Sounds pretty horrible 
Ggood luck for everyone starting tomorrow.
Ali x
Hi everyone.
I’m Jackie, 64 and due to start my chemo on Friday 13th!
I hope it’s ok for me to post here as I live in Spain.
The doctors are all great here, but there is absolutely no support.
I SO wish I had a breast cancer nurse I could chat to.
I can’t even get a full diagnosis…apparently they don’t tell you stuff like that, nor do I have any copies of my pathology reports.
I DO know I have Stage 3, and 10 out of 15 lymph nodes affected - so pretty grim.
I am scheduled for 6 sessions of Docetaxel 75 with Ciclofosfamide. Feeling very scared and alone on this journey.
Hope all goes well for you my fellow travellers. xxxxx
Poor you Jackie. I do sympathise. This is a hard enough journey without the added burden of feeling unsupported. If it is any consolation I have to say that I don’t find the medical staff at my hospital to be as supportive as one might expect. They are rushed off their feet and simply don’t have the time. I am so glad to have found this site where the support and understanding is wonderful. I have decided to accept that the hospital is where I go to get medical treatment and this site is where I come to get emotional support, plus loads of tips and advice. You will find so much help here so do please keep posting and visiting. Good luck with your treatment. Sending hugs.
Hi Jackie,
Welcome. Sorry that you’re so isolated, but you are definitely (virtually) in the right place here.
Even though ugh they don’t tell you much, you might want to get a list of specific questions to ask. Things like hormone receptor status, HER+ or not etc. I guess they will find it harder to refuse to answer specifics.
You’ll almost certainly also feel better emotionally once the chemo has started. So hang on in.
Ali x
Thanks Blueash 
I’ve got my first few bald spots but managing to cover them with a thick Alice band for now. I’ll try my best to leave it alone - I keep finding loose hairs dangling down and when I go to remove them a whole clump comes out so will do my best to resist!
Had my MRI today and when I sat up at the end there were loads of the head rest.
In the grand scheme of things I know it’s not that important but I must admit I was a bit shocked at seeing the bald spots.
I’ll stick with the cold cap for round 2 on Thursday - fingers crossed I get results like you
Good luck to everyone starting this week and I hope those of you with side effects start feeling better soon. I’m on day 18 and feeling much more energetic again but with a lingering cold. I’ve not taken any anti sickness for the past week so stick with it and you will come out the other side soon.
Stefr- how are you doing? Xxx
Hi All,
Thanks for good wishes Beedot and others. First FEC today. Tried cold cap and was grateful for insider knowledge about first 10-15 minutes being the worst, as by minute 2 I thought it was unbearable but knew it would improve fairly soon. In the end I stuck with it, having taken paracetamol beforehand. There was no ice on my head when I took it off though, so don’t know how effective it will be. Have been given GCSF injections to take as standard but had to battle for Emend as not given as standard at my hospital. Will wait now for SEs and let you all know. I fasted for 24 hours before and aiming to continue until 24 hours after.
Best wishes to all of you with treatments this week.
A x
OK I am talking constipation here so those more sensitive amongst you please look away. It has now been a week tomorrow since I have had a decent bowel movement. Just small squidgy bits and nothing at all today despite 6 cosmicol prunes, pineapple plus copious fluids. Am actually a bit concerned it’s almost as if my gut has stopped working. Do I take 2 senna as well tonight? How long does Cosmicol take to work? Chemo unit persevere with Cosmicol today and ring again tomorrow, anyone had familiar. Worried to eat tonight. ?x
Hi Truey
Yes this is getting me down. No real movement this morning. Bit fed up. x
Well that was a crap night. Ended up going to a and e on advice of chemo nurses because I’d been dizzy and a bit breathless. First time I’ve encountered the I’m the doctor and therefore God type so far. Didn’t see a doctor for 4 hours and then it was an arrogant houseman who informed me they didn’t have anyone trained to take blood from a PICC line so he was going to put down that I had refused medical attention!! If they had said that 4 hours previously, the chemo unit would still have been open and I could have asked a chemo nurse. Rant over. Feeling fine but pissed off that I’ve been labelled refusing treatment and having to sigh a self discharge form. What a load of old sh@@te!!
That is awful Scotty. Actually it wasn’t you that was refusing treatment -as if you need that on top of everything else. How are you today? xx
Thanks Blueash. I have been prescribed Cosmicol which looks the same sort of thing. Will do another 8 sachets today!!! Oh Joy.
Poor you Scotty, sounds a right nightmare. And I hope you’re no longer dizzy and breathless. I permanently feel a bit dazed and spaced out (even more than usual!) but I think that’s probably par for the course.
And poor you Mooney. I do hope you have some movement soon. Not nice.
I want to wish all first timers this week the very best of luck. I hope you don’t have a horrible reaction but if you do I am proof that it passes. I’m now on Day 8 and have been up and about feeling normal ish last few days. Been out for walks and yesterday started back to tutoring. I have spoken to nurse about getting stronger anti sickness pills next time and she is on the case. Not Emend but something else. I have a feeling my postcode doesn’t hold a winning lottery ticket! But I will try what they offer and hope it works.
She also says she’s going to get the veinous access team to look at my veins. I love that name as it sounds as if I’m going to meet a glamorous star called Venus Excess!
These little things amuse me.
If any of you are members of unions do enquire if they can offer you any support and benefits as some do, or have links with charities that do.
Hope everyone has a good day. Rx
Scotty/Emma, that’s outrageous. I’ve been told that they have to see / treat you within an hour if you’re undergoing chemo. You should ask for the name of the Consultant in charge and email him/her, copying in the Trust CEO. But I realise that picking a fight is hard work, so quite understand if you don’t.
I’m not sure that my opinion of doctors is going up as we go through this.
Ali x
Scotty - that is awful!! What a rubbish doc! I had that breathless thing for about a day and it was pretty scary - couldn’t focus on anything and felt like my lungs were full of dust. Was it like that? The last thing you need is an arrogant doc!
Blueash - I laid in the bath this morning as I’d not washed my hair for nearly 2 weeks but when I stood up, pretty much all the hair from the top of my head had gone - totally bald. I thought I wouldn’t care but I had a bit of a cry. I’m not sure it’s worth me sticking with the cold cap now. What do you think? I’ve still got some hair around the back but it’s all matted together now Round 2 tomorrow…
Any advice greatly appreciated!
Xxx
Thanks Blueash your advice and help is really good to hear. I’m glad I gave it a go!
I am at the hospital now and the nurse and oncologist have both just said to not bother this time as I’m one of the women it’s not worked for. I’m on EC at the mo and they are increasing the dosage even more today as my tumour hasn’t shrunk. It felt like it had responded well in wk 2 then felt like it has been growing again for the past few days. My oncologist just told me that does sometimes happen so we’ll up the dose today. He’s says we just need to get on with it! Thankfully he has also told me that he isn’t convinced that it is IBC on top of the IDC and that my MRI was as expected (nothing in the other breast - just the main tumour and the lymph node area where I had the SNB. Phew!!
Scotty - I told them about the breathless thing where I had a day of difficulty getting enough air (dusty lung feeling) and it sounded like a known SE but fingers crossed it doesn’t happen again this time for us!
Xxx
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How is everyone? Any new starters today?
Wtp, sounds like the best decision and you gave a go. Good news re the MRI. How do they know it hasn’t shrunk much? Was your MRI a couple of weeks after your chemo? I’m freaking slightly about how we know it’s working, I didn’t really ask anyone. Because I haven’t had bad side effects, I’m weirdly edgy. Though my scalp is sore, so maybe hair loss will put my mind at rest!
Mooney, I hate to ask, but??? Literally my first thought this morning was has Mooney managed a poo.
Take care everyone
Ali x
lol?. unfortunately no. GP was going to arrange ‘little enema’! But Chemo suite said no- risk of infection for goodness sake. So have collected industrial strength unblocker from Chemo unit today?Was tearful this morning, but feeling hopeful having lit the blue touch paper!ie taken a spoonful.
Must say I agree Ali you put your faith in these drugs working. But apart from the constipation I have had few side effects. And I know how lucky I am, and that it may not continue. But you do think does that mean they are not working properly which is perverse logic I suppose.
Sorry about the hair Wtp, even though I haven’t cold capped I think I will still be emotional about the hair.You gave it your best shot.
Hope everyone else is OK and coping.! xx
Mooney,
On the side effects, the chemo nurse said there was no correlation between them and how effective the chemo is, but I know what you mean. I am finding the lava lamps lights and aurora borealis effect of the steroids very strange and didn’t get much sleep at all.
Keep going everyone - roll on summer !