I’ve not ordered yet, but looks widely available online so will probably do that. Boots online pharmacy has, so expect probably they will have in store as well?
Urgency for me has gone away slightly as next round has been delayed as blood tests yesterday showed neutrophil levels have not come back up enough yet. But frustrating, but at least another week of feeling okay!
Sounds like you’ve had a tough run of it, so brilliant to be at the halfway stage and have EC behind you at least. I’ve only had the face rash and slight mouth changes so far - but also sticking with the mouthwash. Hope all goes well with pre chemo today. That amount of steroids does seem a bit of a scary jump from previous doses…suppose we have to trust that it is for a good reason.
That’s great about your hair…i am giving cold capping a go too. I wasn’t hugely confident as read lots of mixed results and then the nurse didn’t seem particularly bothered about it, but didnt find it too uncomfortable so will keep going and hoping for the best!
Hi ladies, first of all thank you so much for sharing all your stories: has been so helpful reading that I am not alone in this journey!
I am starting 3 cycles of EC on the 22nd Jan followed by and 9 weeks of Paclitaxel after. I was diagnosed with a multifocal cancer (I had 2 different hormone positive cancers going on, one grade 2 and the other grade 3). Mastectomy end of November and found micro metastasis in one node (smaller than 2mm so originally told it was oncologically irrelevant). Was told no radio first but now is advised, so lots of changes, like for many of you 
. Oncotype DX returned beginning of Jan a 38 so high risk of recurrence, so here we are!
I do worry about side effects and probably infection most of all but I am aware there is a care team there for me. Also weirdly looking forward to starting my battle against cancer since I now know mine is vicious and could come back so I want to do as much as I can whilst I feel good. Such a strange tension right there!
Top tip about constipation - I alway had issues, even when pregnant so will get prepared for that and try drinking much more water!
Do any of you have young kids? What is your energy level, hygiene measures? How have you organised your life around them? I have a 3 and a 6 year old. Thank you!
Best of luck for the next stage.
I have a 5 year old and so far have had one round of treatment. Energy levels wise, some days I really struggled in the first week but managed to find activities which I could do with him. I even went trampolining on day 5! I thought I was going to fall over as I was a bit dizzy but it was fine!
After the first 8 days I’ve felt pretty much back to normal but I’m lucky that he’s at school now and my husband has picked up a lot of the slack.
Illness/bugs wise, it’s been a challenge. My son has been full of cold since Xmas and I’ve caught what he’s got and it’s floored me. There’s not much you can really do about it though. You can’t keep yourself away from them. I’m hoping we’re coming out of the heavy winter bug season so it should improve.
Hi…hope you dont mind me asking…how was the cold cap? I start chemo Friday 19th and haven’t made my mind up yet about wether to give ut a go. So many mixed reviews…im at a loss. Hope you feel better soon. X
Hi Shi…i start chemo on the 19th Jan. Ive been told to expext diarrhea? Also been advised that I’ll put on at least a stone in weight? That kinda threw me as I assumed cancer patients usually lost weight during treatment? Tia for any info.
I found the cold cap bearable but the nurse was misinformed and didn’t do it right so that was frustrating! Please make sure you are well informed for your hair type and understand what you have to do as they are busy and it can feel rushed. You could always try it once and see? Good luck with your treatment
Thank you Sarahc_123…im not very good with the cold…cold capoing scares me a bit but I think I’d regret not trying at least once. X
You can always ask them to take it off if you hate it. Worth a try maybe? Good luck!
Mandz1 each cycle of treatment can differ or you might settle into a pattern straight away, you have to take it day by day, just get senokot, anosol, Imodium in ready for starters and get an overnight bag ready in case you need to go in at all ready to take with you, get a thermometer to keep track of your temperature and get your teeth he led with dentist if you haven’t already before starting chemo, tell them you are starting chemo. Drink 2-3L of water a day during chemo helps flush stuff through 
take it a treatment at a time, you’ll all get each other through 
Shi xx
Hi mandz1
I had quite a similar experience to sarahc_123 - wasnt confident that the nurse knew what they were doing/was that fussed about it, but apart from 10mins of a very cold forehead at the start, didnt find it too physically uncomfortable at all. Lots of people advise taking a blanket, gloves, wearing thick socks etc to keep you warm, which I did but didnt end up needing. I don’t necessarily expect it to work, so have been able to stay quite relaxed about it and definitely just taking a worth a try approach! On advice from someone else, I didnt wash my hair until a few days after treatment and have only washed once a week since with Faith in Nature products - two weeks on, I havent noticed any shedding yet, but obviously still early days.
Good luck for Friday, but hopefully with all Shi’s tips, you wont find it too bad.
Mx
Hi mks, We need to be more assertive! If they offer it, they must be prepared to set it up properly. I’m taking in my own spray bottle, towel and conditioner this week. And also the Paxman booklet that states that my type of hair should be very wet ALL the way through to the scalp! I should also mention that the nurse terrified me by saying that a small number of patients develop scalp metastasis using the cold cap which is UNTRUE.
Good luck to you!
Ill be having 9 weeks worth of TAXOL after my EC. Just trying to stay positive - have bought some Nature Spell rosemary oil to help with growth. I’ve joined the PAXMAN Scalp Cooling group on Facebook (UK and States) and women do have lots of handy tips on there. It seems as though the scalp cooling helps tremendously with hair regrowth so its all worth a shot!
X
Hi Chica1,
You can also take Senakot for the constipation. My Onco team’s pharmacist has prescribed that and another drug which I have to pick up later. Also, speak to them about a dry/sore mouth.
XX
Hi Sarah,
I did exactly that on the 10th when I went in for my first EC. The nurses are rushed and ts not in their interest to get it perfect for you. I took im my spary bottke, condintioner electric throw, water - everything. Next time I’m taking a swimming cap to put on top of the first blue cap as the outer grey cap wasn’t on properly at the back and was bublling which it shouldn’t do. The nurse just said - “that’s the best its going to be!”
I watched all the PAXMAN videos etc and that’s NOT how it should be. If we are going to suffer and have to have this freezing cold cap on our head for that amount of time then at least we should get it on correctly!
Drinking a hot tea/drink helped for those first 15 minutes while your body adjusts.
XX
Re weight gain - I have found a very interesting book that is helping me and gives me purpose to keep moving: Moving through Cancer (link here:https://www.movingthroughcancer.com/).Has interesting advices on the positives of exercise and how much when (walking/aerobic/strength) and nutrition also
Amazing that you went trampolining after 5 days! Inspired 
!
Are you limiting the amount of school things you go to? My daughter has an even at school in the next few weeks and I am in two minds about what to do. Oncologist said not to wrap myself in cotton wool but nurses suggested staying away from too busy places 
. Thinking about leaving it for now…
Awe thats very helpful. Thank you for the advice. I’ll have the chat and see how I feel. Hope you’re lucky and manage to keep the majority…if not all… of tour hair. Xxx
Yes definitely worth a shot as you say, just a bit of a faff! How long is your EC for? Are you having it weekly?
Good advice! I didn’t mind the cold at all… I’m just worried that it wasn’t done properly and my chances of keeping my hair have already been blown. xx