Welcome margaret…sorry you’ve found yourself here but hopefully it will be of some help to you. I hope your tummy fares better with your next round…
I haven’t been feeling too bad other than stressing about my hair which despite the bluddy freezing cap is falling out by the bucketload. Am trying to convince myself it’s just ‘thinning’ but if this is the effect from just one chemo dose then it will have thinned to nothing before long L
I have got a wig from my local hospital but it was the best of a bad bunch and definitely looks rather erm, wiggy. And I am actually having trouble putting it on properly at home – it was done for me at the hospital but when I try and recreate the look at home it just looks like a squished cat is sitting on my head. So it’s scarves for me by the looks of things.
Keyfeatures you said you shaved your hair off – how did you find that? Am dreading the prospect especially the first sight of bald me in the mirror – I imagine one of the cancer lows for any of us that lose our hair…
Good luck to those of us whose second chemo sessions are due this week. Mine is tomorrow – I think yours too Jew and szh so will be thinking of you while I’m in my toxic chair.
Fiona508 – am also triple negative like you and pretty stressed that there is less in our medical toolbox than for other women with breast cancer. Can you tell me more about Avastin – I did a quick reccy on the internet but it seemed to say it was only for those with secondary cancer and not available on the NHS anyway. Are you going private?
xx
I was due for my second FEC today but after 5 attempts to get the cannula in (and the veins ‘blowing’) I was told they couldn’t give it as it was too risky. I need a PICC now and wondered if anyone else has had one?-I’m a bit worried I’ll have to wear a bandage on my arm for 5 months and have to flush it out myself.
I’m really disappointed as I just wanted to get it out of the way but hey ho. keyfeatures I was prescribed lansoprazole for acid reflux-don’t know if its the same as you but let me know how you get on. Reflux was by far the worst se for me.
Sending good vibes to all the September ladies x
Hi all
Been having some problems on the site, but hope that’s been fixed now.
I go in to have blood tests and a chat on friday and then my first chemotherapy on Monday.
Trying to keep upbeat after 2 surgeries in 5 weeks and ivf (I’m 34 with no kids) yet I’m dreading it! I had cervical cancer 7 years ago and only had surgery, yet as this breast cancer is stage 3 I have to have chemotherapy and radiotherapy.
As with most ladies on here I am dreading loosing my hair. I am having it cut short over the weekend ( my hair is just below my shoulder blades) yet thought it would make me feel in control.
My partner has been brilliant looking after me over the last few months, yet think he has put his head in the sand and whilst I want to be prepared, he wants me to wait and see what the side effects are.
I’m sorry if this doesn’t make much sense, yet I needed a rant 
Sukiem - I had a PICC fitted. It was a painless process apart from the local anaesthetic injection! It does ache a little now and then, and is a problem to keep it dry in the shower even when I wrap it in cling film - though I think Boots chemists sell a cheap plastic cover. I need to check that out.
I was glad to have the PICC as the first FEC was given by Cannula in my right hand, and since then that vein has been quite sore. The Chemo drugs can damage veins, so a PICC should be a big help if your veins are causing any problems. The tube is very small; it is the connector bits that sit on the outside that make it look scarier than it really is.
I get mine dressed and flushed weekly at the chemo centre. I’m not sure how you willl manage to dress it yourself single handed! Maybe they will dress it for you when you get chemo, and you can just flush it inbetween times. The flushing is a saline solution to prevent any clots forming.
A small white stretchy sleeve bandage goes over it to stop it catching in your clothes, but it isn’t much of a problem. I cut off some old soft socks and made some spare PICC covers as the bandage tends to roll up at the edges, and the sock cuff doesn’t!
I would rather have the PICC line than go through the multiple attempts at finding a suitable vein every time I had to give bloods or have the chemo.
I hope this reassures you!
June22
Stephie77 - you sound like you have had more than your share to cope with over the last months! You will find good friendly companions to share your concerns with here.
Don’t panic about your hair. You will find a way to cope with the situation - as we all do. Hats, scarves, wigs, or bald. Everyone finds their own solution. The winter weather is coming, so lots of nice wooly hats are in the shops too!
I asked on the forum when to expect my hair to fall, as I wanted to cut it and donate it to a wig charity before it started shedding. Perhaps you could consider this option too? You need at least 7 inches of length, in order for it to be of use. The hair is donated, and in return, children who have lost their hair through cancer treatments receive real hair wigs 
If you want to read those posts:
breastcancercare.org.uk/community/forums/undergoing-treatment-chemotherapy/when-expect-my-hair-fall
It made me feel better to know I had cut it rather than it going in the bin! And I thought it was quite just, as I posted it off the same day I went and got my own wig. Many others have also donated their hair rather than see it wasted to chemo. It is just an option you might not have considered, so I mention it only in case it is of interest in easing the loss.
But anyway, if donation isn’t for you, you might like to know to expect your hair to start falling around day 9 - 20 after first chemo. The average is around day 14 it seems, though everyone is different. So there is no immediate rush for you to go get it cut short, though you might like to do it whilst you still feel well and energetic. The first week after chemo can be quite exhausting.
I am sure others in this thread will be along to welcome and reassure you soon.
My own BC was stage 3 triple negative IBC, no Lymph nodes showed cancer cells. I have recently had my second FEC chemo, 2 more FEC to go, and then 2 TC, probably followed by radiotherapy… it isn’t a nice journey we are on, but it is possible to do it.
Thanks so much for your reply June-feeling less apprehensive now. Thanks for the tip about the clingfilm and socks too!
I was diagnosed with BC in July, diagnosed on mammogram, so was a bit of a shock as I had had no symptoms. Had WLE a couple of weeks later, no node involvement but diagnosed as stage 3. I started chemo on the 4th September and all seemed to go well at first but I developed a high temperature and was told to go into hospital. Was on IV antibiotics for 5 days and was glad to escape at the end. I had my second dose of FEC yesterday and am feeling a bit low today. I have been reading the comments on the website for some time so thought I would look today to try and cheer myself up as I was feeling a bit lonely. It was good to read the comments on here and I now feel more positive.
Hi lindylou
As well as the support you receive here on the forums if you need to talk things through please don’t hesitate to give the BCC helpline a call on 0808 800 6000. Here you can share your feelings and concerns with someone who will offer you a listening ear as well as emotional support and practical information. The lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
I hadn’t thought about donating my hair and I really like the idea but mine is too short now as I had a lot cut off back in June as a preparation of what was to come.
I’m on day 10 now and noticed a small amount of hair coming out this morning.
Hello stephie77, I’ve had my first last week and am dreading losing my hair but you do begin to get used to the idea with a bit of time and planing some headwear, keep your chin up x
Nicola
Hi NikNak - thanks so much for your good wishes.
Hi In shock. I’m NHS patient and at a teaching hospital. I was offered a place on the ARTemis trial - it’s for Herceptin negative BC patients whose oncologists think that FEC-T regime is the right one to have. After I agreed to start FEC-T with the oncologist I went for blood tests and was then asked if I was interested in hearing about clinical trials. They asked some more screening questions and gave me a fact sheet. I went away and thought about it and had to come back for a second “informed consent” and screening interview. They reverse the order to T-FEC and the 50% assigned to the active arm of the trial also get 4 infusions of Avastin with their 3 Docetaxel and the first FEC infusion. There is quite a long list of preconditions and it is only being run out of certain hospitals. I hope it was a failed pre-condition and not an accident of geography that meant you were not offered it. It’s a funny drug - it ought to work better than it does for secondary breast cancer, so they are now trying it as a first line of attack, and in theory it has the best effect on TNBC. I don’t want to put mtoo much detail of what I have found on the internet as it might be wrong, but if you are interested in hearing more about what I’ve found out then PM me.
Stephie - I had my bob cut short a week ago and really regret not asking the hair dresser to give me a few neat bundles of the cut-off hair. I sew and knit and wish I had saved some hair to make my own fringe and ear level fringe-ettes on a headband to wear under a knitted hat. I got the idea by finding some fake hair headbands on the net and realising that with some supplies from John Lewis haberdashery dept I could have made a fake fringe that looked exactly like my own hair. Just a thought
So - my news - chemo yesterday less dreadful than I expected. Drus took ages to come from pharmacy, first infusion had to be ofr 90 mins in case of allergies. second infusiion meant to be one hour but it was sooooo painful that they slowed it down. Helped a bit with the pain but I think next time I will take paracetamol and codeine beforehand and just get them to push it though as fast as they can. Steriods messing with my sleep but at least it means that I can get the dose startted earlier and earlier each day. Feel fine today. Hve to go back to clinic for a white cell booster injection this afternoon and pick up a prescription for a calcium/vit D supplement as my bone scan results weren’t good. Still waiting to hear if SLNB result was clear - porbably get that result on Monday.
Good luck ladies for those of you with chemo in the next few days.
Hello to the newcomers - feels like there is a nice lot of us now. Great to have the support of others going through the same thing at the same time. I’ve also found a lovely chemo buddy at the hospital who is booked on the same time slots as me.
Sukiem, how frustrating to be all psyched up for your chemo and then not getting it. Have they suggested a portacath as an alternative? My veins are tricky too and that’s what they are suggesting for me (although there is a 6 week wait to have them done at my hospital). Lot less maintenance and you can even swim with it in.
Yes I’m getting the lansoprazole this time. So far no acid problem. Yay!
Been SO much better this cycle. Had chemo 2 yesterday afternoon and haven’t been sick at all. I’ve been doing this fasting technique. Yesterday all I had was water, herbal tea, a Purdeys (fruit juice and herbal extract energy drink), vitamin sachet and a banana. I also just had thin vegetable soup and banana the day before and am doing the same today. There has been a study on mice that shows chemo is much more effective combined with fasting (the normal cells go into a fasting mode which gives the non-dormant cancer cells a much bigger hit). It’s also meant to reduce side effects. They has a small scale human breast cancer study in Australia and initial results were very positive in terms of reducing SEs. Might just be coincidence but I feel pretty normal today and have been tidying the house and might go out for a walk in a bit. No nausea or any other noticeable SEs at all at the moment.
On the hair front, I’ve gone from buzz cut to razor cut. My chemo buddy is a baldy too. We both seem to have a dislike for all things wiggy. I’ve come across a lady who does mehendi henna crowns on chemo baldies. They look like fun - why not?
And I’ve sent off to be booked onto the younger womens forum in Brighton at the end of November. Anyone else going?
Hi keyfeatures-I was gutted that I couldn’t have chemo and you are so right about the psyching up bit! They won’t fit a port as the nurses told me that they are usually for the herceptin ladies. Got an appt for the PICC next tuesday and then chemo on thursday fingers crossed.
So pleased that you are having a better time second time around and really interesting stuff about the research. I ate virtually nothing for a week after my first chemo and since then can’t drink anything but sparkling water with lemon slices. I think first time around I got off pretty lightly so there may be something in that research.
I’ve also filled in my Brighton Forum app form but need to get it sent off-thanks for giving me a nudge!
sukiem - here’s a link to the research. A friend of mine worked on a documentary on the health benefits of fasting that featured this. With the human trials they suggested day before, day of, day after. Lots of fluids and no more than 200 cals (avoiding protein). I thought it would be impossible but actually you don’t feel any more hungry on the second or third day I find.
My onc didn’t like the sound of it but I think they are always like that about stuff until it’s been fully empirically supported. Which is fair enough. But I still thought it was worth giving it a go because the theory makes sense.
Thanks keyfeatures-will take a look
InShock - sorry missed your post before. Definitely have a touch of the chemo brain these days. Short term memory has major wobbles - the other day I lost two hours - couldn’t remember eating breakfast until I saw my dirty cereal bowl in the sink and the clock said 11.00am when I thought it was about 8.30am! Also had to ask a coffee shop assistant to repeat my order to check I’d asked for everything, and it was only for three people.
I feel much better with the shaved head and I too went home from the wig place feeling I’d settled for the best of a bad bunch. If you’d like to perserve with yours though you could think about getting it custom cut. They often put a lot of extra hair on wigs and having it trimmed can make it feel more you. Trevor Sorbie has an initiative that someone recommended to me and you can find trained salons here My New Hair. Personally I’m not going to bother at the moment because I suspect I still wouldn’t wear it. I also bought a couple of cheap fake fringes from amazon that you can wear under scarves / hats. Although they feel a bit weird too. Remind me of dolls hair - especially those Girl’s World heads from the 1970s with the winder on the neck to make the hair ‘grow’. Does anyone remember those?
We all seem to be at a similar stage of finding a hairloss comfort zone. Let’s face it, it’s not what we would have chosen. Don’t know if you’ve seen this site. The girl who does the blog is so positive and upbeat you can’t help but feel better - and she’s dealing with indefinite hairloss from alopecia, not chemo. I may have recommended it on this thread already, if so apologies. http://eyelineher.blogspot.co.uk
thank you keyfeatures. yes all similiar about the wig/hair stuff. i feel at the moment that i shall stick with the scarves. am panicking about getting down to the haidressers for a trim. will i make an appointment and then not feel like getting it done. im lucky my hairdresser is trained to do it. will we just feel like everyone is looking because its a wig. with a headscarf its obvious we’re just going through treatment. good comments for niknak too, the site is so good to dip into.thanks again xx
Hi everyone, just wondering how you all are? I have really liked reading all the September ladies posts, the fsating article was interesting and worth a try I think.
I’ve had a pretty good day today, I’m on day 11 now and apart from having a bit of a headache tonight I have felt fairly normal today. I have noticed that my mouth is a little sore, no ulcers but just stings a bit and my throat and gums are a bit sore. a small amount of hair coming out but nothing significant as yet.
My taste buds seem to have recovered at the moment and most things are tasting normal, which is good because I like my food and I was rather distressed about not being able to taste things last week. Incidentally last week lots of things tasted really sweet to me, has anyone else experienced that, I had lots of weak lemon squash last week which was ok.
I was really interested in fasting, but left it too late this time - I have to take my steroids with food and start them on a Wednesday the day before chemo. Just while I am on the Docetaxel though I think. But I have to turn up for the clinical trial blood tests on the Wednesday and they prefer you to be in a fasted state. So I’m going to fast every Tuesday.
I want to quote my very wise sister here: she says there are a whole bunch of variables that will determine how well we come out the other end. Some of them we can’t change and some of them we can. So it makes sense to make all the easy positive changes and to think about making some of the more difficult changes at least some of the time. She sent me some books which initially upset me, I thought that the back cover blurb should have read “Hey there lard-arse, no wonder you got cancer, eat less, move more and stop eating all the pies”. But I’m reading them more slowly and thinking “well yes, I could do that, and that’s another change I could move towards”. Fasting is an easy variable that I can change, as is cleaning up my diet generally. But it is very hard to read all this stuff and wonder if I could have prevented it happening.
Between finding the lump and starting treatment I put on a lot of weight - eating junk food, staying in my PJs all day and drinking a lot of alcohol. So with the change in my taste buds, and appetite, a weekly fast and getting out into the fresh air every day for a walk, I’m hoping that I will be able to start wearing my favourite clothes again. (I had to buy a size 16 outfit to go to hospital appointments because I wanted them to know I cared about looking nice) I also want to be closer to my normal weight (size 10 bra size 30E) so that the surgeon can do a reconstruction on a breast that is more my normal size. Also I have a permanent fracture in my spine and when I am this heavy I get sciatica.
Everytime I hear about a variable that I could change I put it on a list, think about how hard it would be to make the change and then decide whether to start now, start later, defer the decision or reject it. Changes so far:
No alcohol - easy- have lost the taste for it.
Less sweet food - tastebuds have changed - easy.
Use fruit as a sweet treat, not chocolate. - easy.
Walk every day - pretty easy. I used to walk 14 miles for fun at the weekends. now my fitness is down to about 3 miles before my shins hurt. But there is a nice walk along the Grand Union canal from home to a tube station half way to the hospital, so if I walk the 2 mile long route both times for every hospital appointment that is an easy change. And I have planned out trips of about 2 - 3 miles with a nice destination at the end.
Eat less fat and more complex carbohydrates. This one is hard. My body runs better on high fat and protein. Carbs make me hungry. But one thing that is deffo true for TNBC is to eat a low fat diet. I’m working towards this one, and concentrating on enjoying healthy fats in very small moderation that give me extra benefits - olives, oily fish, seeds and nuts.
Take up meditating again - sometimes easier than others - right now I am doing just 10 minutes a day in the mornings.
Dry skin brushing. It is very calming and soothing (I use a gentleman’s suit clothes brush which is softer than the Elemis spa brushes) and you brush towards your heart and it is supposed to help with lymphatic drainage. I do the bits I can reach every morning and always on the affected arm/breast. And I get my partner to do it whenever I get the chance. It is a nice way of being touched and being close even if in pain.
Hoping to start swimming next month. Found a very interesting reference to exercise and lymphoedema. Even though I have only had SNLB I want to be super cautious because I used to love rock climbing and want to go back to doing that. Apparently if you delay doing any rehab exercise for 4 weeks after lymph node surgery and then start - in one year you have no difference in your fitness and flexibility, but much less incidence of lymphoedema.
Would love to hear about thoughts on changes you might be thinking of making. The ones above aare the easy ones (for me) there are others that are going to be more challenging that I need to think about a bit more before about posting how I feel. And actully there’'s the confession of the biggie that I need to deal with - start admitting I have feelings and fears about this and deal with them directly instead of writing action points like a performance appraisal.
Is anyone in London going to the Haven? it is in Fulham. on the district line. I have booked into the next intro day on 9th October.
Have a great weekend ladies.
Hi Fiona508, You sound like a very active lady and you will I’m sure get back to doing all the things you love, you are so positive about all the things you are doing/
When I was diagnosed in May, I went to pieces, (my tumour was grade 3, ER+ and HER2-) , I went days some weeks without eating more than a few mouthfuls of food, I was drinking way too much, it was my means of escape and getting some sleep which eluded me most nights if I didn’t have a drink. I am a 16, the smaller side of 16 and my weight is dropping a little at the moment.
Personally I dont necessarily think your lifestyle has a massive impact unless it is very extreme all the time. Certainly over the last 20 years of my life since I’ve had kids I have always fed the family and myself on the best food we could afford and nearly always cook from scratch with fresh ingredients, I walk everyday, I have a large dog who needs me to walk which is great because I love being outside. I grow my own veg although this year hasn’t been good for obvious reasons we have fresh eggs from our chickens.
That government report the other week said ‘Do more housework, get out in the fresh air and eat fresh food will reduce the chance of getting breast cancer’ That’s basically what my life has consisted of for the last 20 years, didn’t work did it! Don’t get me wrong I’m not bitter now, I was back in May, why me, what have I done to deserve this. Never smoked, never been on the pill, drinks moderatly and eats healthily and exercises. Serously if you are going to get cancer you’ll get it regardless of how you live your life, that has always been the way I have thought about it.
We must all do the things that work for us, make you feel better and positive about the future, personally I am only making small chages as I don’t feel there is a massive amount I can change, the chemo has taken care of my heavier drinking through the summer and I drink green tea a lot of the time and next year I am going to up my exercise to get fitter but apart from those things I think the rest will stay pretty much as it is.
Have the other September ladies changed their lifestyles, I’m interested to know what people are doing?
I’m struggling with not being in control of my body. This week my hair as started to come out & in the end it was getting on my nerves so much (sick of finding hair everywere) that I went to the hairdressers, got it cut short, much happier with it & had my wig fringe trimmed at the same time, the airdressers were so helpful. But later on I noticed that the hair at the top of my head was really thin so this has brougt me down again, I really should get used to the fact it will all go, been burying my head in the sand a bit - maybe thats wy I’m losing my hair!! Arrggghh!!
Also hate that I feel like I’m getting my period when this was one thing I didn’t mind that would change - sods law. In the law of balancing things up, had very little sickness this week after 2nd FEC but have had a persistent cough and sore throat.
Does anyone else get starvingly hungry then the minute they’ve eaten feel bloated?
I don’t tihnk being ohme alone most of the week as helped as it as me made me feel more sorry for myself but just feel so concious of not looking like I usually do. Anyhow enough of feeling sorry for myself , I’m lucky in that I’m going to see my man today down in the New Forest so a change of scene, some fresh air & some love will make me feel better. You all enjoy your weekend the best way you can - indulge a little 
take care x