I saw my counsellor yesterday and it’s the first time I seemed angry. Never wanted more chemo and worried about my hair. Stupid I know. Also friends and family have got to that bored stage and want the old independent me back.
Wish there was a place we could all go for six months and be looked after (talking five star accommodation obvs with mountain or sea views) and then emerge fit well and glowing.
@docb you might not have more shedding. Honestly I had no more than usual app way through and came out with a full head of hair and no patches. You never know and if it happens sobeit.
You’re doing what you doing what you can. One day they will know why we all react differently. Having weekly cap is not easy and quite barbaric - you’d think by now they would have something less mechanical
Re hot flushes - I am post menopausal and only ever had hot flushes at night - you could set the clock by them 9.45pm every evening 
I had exactly the same after the first EC treatment but no hot flushes after the second. The only difference between the two was that I had IV dexamethadone first time and oral the second. I didn’t realise it was the steroid that caused the flushes.
I went for a wig consultation today. I am cold capping but have lost about 40% and have some patches which are coverable with a hairband. I got in a state the other day and wanted some certainty about what to do if the shedding speeds up after my next treatment on Monday. It was a positive experience. Lovely lady, knowledgeable, kind, experienced. I’ve ordered a wig which my husband assures me isn’t wiggy, and if I don’t need/want it then I don’t have to have it or pay anything. I feel much more settled in my mind this evening.
@docb ouch thats a lot of treatment. Sending you hugs to get you through this … you will do it! Keep going x
Happy Thursday everyone! Nearly another week gone 
Am about to buy Netflix as I’ve exhausted Prime and iplayer on the thriller front. Any recommendations please? Just finished Jetty on iPlayer and in the mood for something that isn’t so gloomy. And we have the Olympics to watch…
Also forgot to mention in case useful I use the vine health mobile app (now sciensus) to log my appointments. Keeps them separate from daily life stuff. Quite good. I used to log symptoms daily, now CBA. I limited/tweaked the personal data I gave. Has some useful articles. I take the macmillan log book to every chemo session so the BCN can log medication and bloods.
Re nails: I used polybalm through paclitaxel and Jennifer young nail mask. All expensive but my nails survived and I treated myself to a manicure between phases and technician said really strong. I’ll let you know how they go with AC. Need very little of the nail mask so think the tub I got will last to the end
Any recommendations on anything to mask hair patches - I want to be ready. I’ve used colour wow for years on grey roots and seen boostnblend. Worried about blocking pores and making the situation worse x
Love these tips! Especially the bear hunt quote
Thank you for sharing xx
Hi everyone … and hello to new starters!
Wow I’ve missed a lot … but have read all your messages and glad to see some positivity!
I have had a few weeks since my scan where I kind of wanted to bury my head in the sand unfortunately pretend cancer wasn’t happening … that and busy home life meant I’ve been rubbish at logging on … sorry!
My CT scan showed a few worrying things … enlarged lymph node in breast where tumour is … so had a FNA and ultrasound scan yesterday… waiting for results. Another node in my left lung that shows signs of disease … what they don’t know and testing has to be put on hold due to the chemo … which is great 
and lastly some liaisons and thickening of tissue is my right hip bone… again not sure what it is and will have to keep an eye on it! So all a bit shitty but suppose nothing I can do until my chemo is finished … which has been a ride in itself 
After reacting every week to Paclitaxel my oncologist decided that they would now stop that drugs and swap it to Abraxene … which means chemo will now be every 3 weeks rather than every week … starting next week! So least I have a weeks grace of not feeling like crap 
and hopefully two rounds of that before I move on to EC… but absolutely not even thinking that far ahead yet
A lot of you talked about symptoms of horrible tongue, food not tasting great … wanting all the carbs/ beige bland … definitely can relate to all that!! Visions of lovely fruit and veg everyday seem to have gone out the window … but each day I start thinking right today I will eat well 
I haven’t really been listening to my body and resting … made slightly more difficult with a 3 year old and two teenagers and summer holidays now … but need to as I am so tired and I’ll be honest a little grumpy!!
So I am back … trying not to pretend anymore, read all your lovely recommendations and advise and once again embrace this shit show that is cancer 
x
@charlie22 … what an absolute ride you’ve been on. I did wonder why you went quiet but appreciate we all need to retreat into our hole every so often. How are you feeling about all these results? The node in the breast is ‘ok’ as that’s very typical in BC (I had all my nodes removed and 2/25 were infected) … the others might just be normal for you?? Lots of women find stuff in their bodies that pop up after the CT scan and most are just things that are there. Either way, hope you’re coping with all this added stress. Extra hugs to you xx
@jbb welcome to Netflix… plenty on there, I couldn’t be without it now (once you watch an ongoing series, you are caught by their net!!). Just try loads of things … and be open to new stuff. I watch the truly ‘awful but silly and easy to watch’ Emily in Paris as it’s light and fluffy, something I’m craving at the moment.
I also say we should all have 6 months in 5* luxury with mountain views… how do we contact that new Health Minister who’s up for spending all the coffers at the moment!!!
Olympics tonight… let’s cheer ourselves up by watching young. fit and healthy athletes who can do things we can only ever dream of… bliss.
Happy Friday team… keep going, keep going, keep going… we can all do this xxx
like you ive lost so much hair but if im honest feel lucky that I do still have a lot. I have a bald patch right on the top of my head but I am able to pin the front back and you cant see it.
Got omeprazole twice a day worked a treat, also started Lorasapam anti anxiety tablet three days after chemo and one the night before chemo and morning of, definitely helped as I believe I am suffering from anxiety sickness. Also got prochlorperazine this time which has worked a treat for the sick feeling. Last EC done !!! four more sessions now with Paxliatacel so hoping for less side effects.
Good luck hope all is going well for you x
Hi @donna_51 im not feeling too bad … my mindset is let’s just get this round of chemo done and dusted and then focus on the next step. And your right about the nodes … I think my worry was that all nodes at the beginning were normal … and obviously the lung one is more concerning but no point worrying about something in advance … the BC nurse did say the same these could be things I’ve had before and just be nothing … for now that’s what I’m believing 
Absolutely I am up for 6 months in a mountain where do I sign up??
Oh I’m the same about tv at the moment … anything too heavy and the concentration just isn’t there … I have somehow been roped into watching love island with my daughter this year … absolutely horrific but I’m enjoying the time sitting with her and it usually ends up in lovely little chats … so grateful for that! 
Just wondering with all the ladies that have braved the shave … how’s your head/ scalp … mine was fine at first but now seems to be quite irritated and a bit itching with lots of little lumps / spots I’m thinking it’s maybe the warm weather/ medication but not sure?? Also someone mentioned headaches … I seem to be getting more of them since shaving? Definitely still getting the tingling sensations oh the joys!!
Forgot the olympics start tonight … so that is something to watch … unfortunately I only have a couple of weeks before I am a football widow again 
so glad for the extra tv in our bedroom
Hi
Just trying to work through old posts and see if I can be of any help.
I used to use tanluxe on my face. CBA with my body. However I’m trying to use clean products only now and have found the moogoo gradual tan has worked on my face. Gives me a warm glow when really I’m quite washed out - the cancer look.
My skin reacts badly to steroids - red inflamed face for a couple of days post treatment so I don’t use then. It’s very reasonably priced too.
Hope this helps x
@charlie22 so sorry to hear what you’re going through.
This process is pants. I was so naive when I started mine and the constant twists and turns leave you winded. I thought all was good and I was headed for surgery at the beginning; my scans showed no nodel activity and then a petscan found evidence of cancer in my nodes: one in arm and internal nodes (those that are closest to the lung, which they aim to eradicate either with chemo or radiotherapy as they are not surgically removed). So I went from a lumpectomy lined up to neoadjuvant chemo. Purpose of saying this, it’s all so unpredictable and nerve wracking but there are always options and our medical team will find the best solutions.
We’re with you in this process (I’m not calling it a journey - there must be another word). We are going to get through this. Please do ring macmillan if you can. I have found them so understanding in those moments when I felt really low and not in control. It must be really tough with a toddler and you’re being an amazing mum as you go through this. My kids are grown up and I don’t know how everyone on here with young children is managing to cope. I am in awe of all of you, especially the mum whose daughter is also ill.
Sending a hug and my best wishes xxx
@charlie22 sorry to hear you’re having to go through even more stress and worry. Waiting for results is the worst. I find that really difficult. I think you’re doing the right thing by just focusing on one step at a time and trying not to think too far ahead. I saw a t-shirt a few weeks back which I bought which says ‘one day at a time’ which I think is a good motto to live by at the moment!x
Hi everyone
Like quite a few people on here, I’ve been quiet for a few days and feel like I’ve missed a lot.
Hello new starters.
I’m on day 10 of cycle two after EC and I think today is going to be better. This time I’ve really struggled with indigestion, nausea and a bad cough. When I called the helpline to try to find out if I could up my omeprazole or take gaviscon they ended up sending me to the hospital. When I arrived I was told it was 5-6 hours waiting and the waiting room was full with a lot of sick people. There was no door or window and no air flow. I decided to leave as I thought that there was more chance of me becoming ill, this was day 7
Thank you to everyone who has described how their onc teams have adjusted medications to help with symptoms of nausea. At my next appointment I’m going to go in with this info. I actually had to take anti sickness meds yesterday when I popped out to the shops but believe that it may have been anxiety induced. So thank you @smt for raising this.
@charlie22 im sending you massive hugs. The twists and turns of this journey are awful, but you are doing the right thing and taking time to process and then reaching out for support. As for headaches, I have really suffered but have found that using the 4head stick and sniffing olbas oil on a tissue has really helped. I’ve only had to take medication once this cycle for a headache. Give it a go.
Here’s a question for anyone who hasn’t cold capped. Has anyone gone completely bald yet? I’m not liking the fuzz on my head and want to know when it will go. I think I’d be happier with a shiny bald head. I don’t think it will have quite the same ill look.
Sending everyone best wishes. 
Thanks everyone … it really is a process … I also hate the word “journey” It’s the waiting for me personally … once I know what the plan is I seem to be a bit better and feel more in control … saying that I just had a call with the nurse about my new treatment and then we briefly discussed the next chemo which will be EC … so worked out I have 6 cycles left … which means if all goes to plan should be done around mid-December so then I had melt down thinking that’s bloody ages away but each step at a time I suppose!!
@alig1961 I know what you mean about the hair … mine is fuzzy with little bald spots and thin … I also wonder when it will completely go x
Hi everyone, I had my mastectomy, chemo and radiotheraphy nearly 5 years ago. I did not cold cap, well I tried the first time for about half an hour but had to give up as it gave me such a bad migraine which ended up lasting a couple of days. I washed my hair, then my bald head and later my hair as it grew back with baby shampoo for a whole year. It is a tip worth trying. Thinking of you all going through chemo. There is light at the end of the chemo tunnel. Take care. Sunshine21
Thanks for that sunshine21. My positive is that after four cycles of weekly paclitaxel with cold capping I have so far kept all my hair. My bad news is that i am in hospital having missed my fifth round yesterday as I had a nasty fall at home and ended up in a and e with a fractured vertebra. Can’t quite believe I’ve managed to do this on top of everything else! Fortunately they don’t need to operate - just have to wear a brace, keep pain under control and limit activity. The consultant said it shouldn’t affect my chemo although the chemo will probably affect healing of the fracture ie will take longer than usual. Never rains…
@lolac aww I’m so sorry to hear that! It’s definitely not what you need on top on everything else! How frustrating for you 
Wishing you a speedy recovery 
good news about your hair though xx
@charlie22 - im so sorry for even more worry. But i do think if you can try to focus on one stage at a time it might seem more manageable but its all pretty big grandma pants though…
Im suffering with headaches abd migraines. My onc team said it was stress related - who knew… so im trying even harder to rest / not be stressed but its not easy!!
Anyway on the scalp care I have been using the moogoo scalp cream (i think thats what it is called) at night. Plus the bio oil lotion during the day.
Im also washing my head with baby shampoo & conditioner from Aveena.
Basically really sensitive stuff.
I had a buzz cut a few weeks ago now - i think others find it a bit of a shock but i am comfortable with it - I am an all or nothing kind of girl 
Xx
