Niknak321 - Keep on top of that sore mouth if you can cos it can be a precursor to thrushy patches (I had some at the back of my throat and on the roof of my mouth last time). You can get a mouthwash to keep it in check - either buy at a chemist or get on prescription (which saves a few quid with excemption card) - chlorhexidine gluconate antiseptic moutwash is the stuff. I’ve also been prescribed nystatin because I still got oral thrush despite the mouthwash last time. The candida loves me I think and it thrives on steroids. I had oral thrush as a baby after antibiotics and again when I started a steroid inhaler for asthma as a teen.
Fiona508 - those all sound positive changes but don’t beat yourself up about ‘causing’ your breast cancer. I was slim, fit and healthy eating and still got it. Think my main risk factors were dense lumpy breasts and not having kids. And there are a lot of environmental toxins that we can’t do anything about that are definite risk factors too. My main changes have been avoiding dairy and soya and going completely teetotal (only used to drink a couple of units a month anyway). I’ve also added in spirulina and chlorella supplements. There wasn’t much else I could change! Unfortunately I’ve had to cut down my exercise regime a bit as I used to do a lot of weights and interval training that I’m not up to now. I’m going to a yoga class and doing gentle runs around the park instead - will build up to more when I can. I go to The Haven in London sometimes. I have a massage and a counselling session there coming up and I’m booked on the Reinventing your Image workshop on the 7th November.
Hello to everyone else, I hope you are finding your way through this journey as best as possible.
Nicola
Interesting posts Fiona and Niknak. I had some feelings of guilt and responsibility for my diagnosis particularly as I’d been a total party animal until I had my son 6 years ago, was on the pill for years and had my son late in life but I agree with Niknak-it happens to some regardless of lifestyle. For the last 6 years I’ve been a health and fitness freak.
I read Jane Plants ‘Your life in your hands’ and the ‘Anti cancer’ book by David Serban Shreiber. Both made some sense to me although I know they are a bit controversial. I think important points are made regarding the huge variations in cancer stats worldwide and the possible reasons for these.
I’ve overhauled my diet quite a bit and have cut out dairy completely and eat meat probably about once a fortnight. I was a big green tea fan before chemo but haven’t been able to face it since. All I drink these days is sparkling water with lemon slices. Once chemo is finished I’ll start taking supplements such as Flaxseed and Selenium. I’m also looking at doing a residential course at the Penny Brohn Centre in Bristol to learn a bit more about nutrition and meditation.
That said I’m hugely conservative in many ways and want all the orthodox treatments they can throw at me. To be honest the physical side of the treatments I’m handling ok but struggling with my feelings about it all.
Thanks for the info re: SNB rehab Fiona508. I was given absolutely no information about this after my op and was weiding heavy shopping bags 2 days later (can also blame my lack of common sense for that!). I’m suffering now though with constant aching and shooting pains-all normal I’ve heard. I’ll have 2 dodgy arms after my PICC line is fitted next week-apparently my blood pressure will be taken from my leg in future. I don’t know why but this amused me and my mum no end.
NikkiM - sorry you are feeling a bit rubbish about the body changes. It is really tough having to face all these unwelcome changes. Can you treat yourself to anything to make yourself feel better? A couple of new pieces of clothing or some new eyeshadow? I found some scarf and hat styles I’m quite happy with now - there are a lot of cloche hats about this year, Marks and Spencers are doing some, I went for this one http://www.marksandspencer.com/gp/search?field-keywords=cloche&viewID=results&intid=gnav\_search&node=42966030. You can wear a beechfield morf/buff in a complementary colour underneath (I personally like burgundy for Autumn) which keeps the head warm and means you can still take your hat off and have some head covering. My other fav at the moment is tying a long scarf spanish style so you make a twisted ‘bun’ with the long bits at the back and then tying a narrower scarf around the head and under the bun to secure. This is me with it on - http://pinterest.com/pin/417286721693089566/ To be honest there are so many women around where I live that wear headscarves for cultural / religious reasons in various styles that I don’t think anyone would even consider I’m wearing mine for hairloss. Probably would be more obvious if I was going into work.
P.S. There seem to be a lot of Nikkis etc about for September chemo. My hospital buddy is another one!
Nicola
hi there keyfeatures-I also ordered some really lovely cheap chiffon scarves (with a little fitted cap bit inside) from annabandana. I’ve not lost much hair yet due to cold cap but it is shedding.
Just to add that I went to a Look Good feel Better course earlier this week-loads of gorgeous free products (of the v expensive variety) and plenty of tips such as how to draw on realistic eyebrows. The volunteers were lovely and we all had a (much needed) laugh. If anyones interested google them they have a list of venues where they do the course.
cheers for that sukiem - think I need to stop buying scarves though. I have SO many. Used to have to wear them for trips to Iran to visit inlaws and also filmed in a few Muslim countries. I even did a documentary all about hijab fashions in Egypt where they tend to wear more adventurous layered styles so picked up a few tips and scarves there. I’m definitely going to look into the LGFB workshop - although I tend to go for parabenfree / mineral cosmetics as much as possible so the pricey freebies might make good Xmas gifts (cheeky) - but the tips on eyebrows etc. would be welcome.
ohhhh, I used to be active and fit. Had a work stress related breakdown in 2010. Spent the next 2 years in my PJs drinking way too much and eating icecream and chocolate instead of real food. Put on 2 st, didn’t leave the flat and got told off by GP in the spring because my vit D levels were so low and my BMI so high. I’d just started getting back on track with my life, had a place on a training course for a complete career change and found THE LUMP on the last day of the intro residential course. BUT, we are where we are and I just have to draw a line and start again.
Nikki M I know what you mean about being out of control of what’s happening, I hate it, it just isn’t me and it freaks me out. All I keep thinking at the moment is getting through Christmas and that the end of February isn’t that far away really and then life will resume. x
Hi sukiem - I’ve got a PICC line in and yes it’s on your arm but you do get used to it. I chose it because they normally can take your blood tests from it as well as giving chemo. The district nurse come to flush it and change the dressings once a week. No problems so far. Not sure how anyone could do this themselves!
I did have the choice of lines, my other options were a portacath(It’s under your skin and they use a small needle to connect through your skin, I’m afraid that put me off even thought the needle is tiny!!!) and a hickman line. These 2 lines had to be put in theatre! Although I love swimming I was advised that there is an infection risk if it’s not your own pool - I’d love to have my own pool!! LOL. It was uncomfortable having the local anaesthetic but that was all.
Hi everyone, well my hair is virtually gone - I was so fed up with it falling out so my haidresser clippered it and i have a litle left. Can’t quite come to terms with seeing my baldy head. I have a couple of caps from bohemiaheadwear.co.uk/, one in purple and one in Navy, my favy colours. Founf out about the website from the eyeliner lady website that I found like keyfeatures. Also this lady shouwed BUFFS - a kind of material tube that you can wear in many ways.
Like everyone feel my wig is strange, seems silly to say that, as it’s not my hair or style so of course it’s strange. I’m a hat person anyway so I’ve been out with the cap under one of my normal hats and felt more myself. I’d still like to take down all the mirrors in the house!!! Not sure how much I’ll wear my wig to begin with but bravely looking ahead to when I finally go back to work I hope it will mean I can get on with my job and not have to explain my illness to all and sundry!!
My secound chemo experience has been much better. They slowed the rate down when giving me the chemo, so I felt fine whilst there this time. I’ve not had the awful headache and muscle/bone pain either. Though I’m on a heafty dose of codiene - so I’m drinking lots and taking the meds for constipation. I’ve been more sleepy but I’d rather have the that than the sideeffects.
Funny how my tastbuds changed again after about 1 1/2 weeks following chemo - I got to enjoy my coffee not now though.
Not going to Brighton - too far for me. Cybernet meeting for all of us for now!!!
Sleep well girls.
Nikki M wrote “Does anyone else get starvingly hungry then the minute they’ve eaten feel bloated?”
YES! I do.
I get a hunger pang, don’t really enjoy what I eat because the taste is so messed up, and then as soon as I have eaten, I feel bloated and wish I hadn’t bothered. But then the hunger pang starts again. I’m starting to ignore the desire for food and only eat regular meal-times and in smaller amounts.
Also found taking one of the constipation tablets at bedtime seems to stop me feeling so bloated by ‘cleaning me out’ better the next day! (Sorry for such information.) The Oncology nurses packed me off with tablets for contipation and/or diarrhoea so I was armed for all possible eventualities!
Day 13 (unlucky for some) after chemo and my hair is starting to come out big time, might be getting the clippers out this morning I was thinking about the clipping the dog anyway, I might aswell join the queue!! I cried, I can’t bear it!
I’ve had a headache on and off the last 3 days, I’m thinking this maybe linked to my hair coming out has anyone else felt like that. I’ve been keeping a detailed note book daily of SE’s and other bits and bobs so I can pick out the relevant bits when I go to the onco on the 8th
I had really bad hunger pains too, my comment was my stomach feels like it’s eating itself. I have learnt to igmore it now and I’m also having small regular meals and keeping an eye on my weight.
My hubby and I yesterday booked to go away to Aldeburgh in Suffolk, Fri - Mon, it’s our 22nd wedding anniversary next Saturday and we took the plunge and booked yesterday, I was hoping my hair would last but I’ve worried about it so much I’ve probably helped it on it’s way.
Ladies I hope you are all having reasonable weekends, Nicola X
Hi Nicola,
sorry to hear about your hair. Still trying to get to grips with having lost all of mine. It started feeling strange about day ten of my first cycle, a few days later my scalp was hurting (like releasing your hair from a tight pony tail), a couple of days later it started to fall out in clumps so my daughter cut it very short. It still hurt, so I took the clippers to it. Wish someone had to.d me that losing my hair would a)happen so quickly and b)be so uncomfortable. Forewarned is forearmed, as they say.
i also had a problem with a sweet taste this cycle. For the first few days water tasted as though it had aspartame in it. Foul, but I’m on day 11 now and the taste has all but disappeared.
According to the information I have (and my experience), a lot of the digestive problems klick in after the first week because your cells have taken a hammering and the chemo has prevented your body from replacing them as it would normally. That’s why your stomach feels like it’s eating itself. My worst stomach cramps started on the Thursday (day eight) and resolved themselves by the Monday morning. Of course we all react differently to the chemo, but hopefully your uncomfortable phase will be similar to mine - and hopefully shorter.
Wishing you a good week three.
Margaret
Morning all - I’m just about back to being human after second lot of fec. This time I felt much more nauseous but not as spaced out. I dont think the portocath I had put in helped as my shoulder/chest area is tender and the antibiotics are making me feel sick. The hair is just about clinging on but I might be brave and get rid as I cant go out without a covering of something on my head as one gust of wind and it could all go!! I heard Jessie J is going to shave her head for comic relief and thought maybe she could start a fashion trend. We would be at the forefront of fashion .
Lol
hi lollo01 - strange how the cycles can be so different, isn’t it. I’ve been really good this time. Been out running this morning (only day 3 post chemo 2) and went for a day out yesterday to the coast. No vomiting or acid reflux at all and enjoying my food. If only they could all be like this. Short term memory still shot to pieces - convinced myself I’d lost a necklace yesterday afternoon because I’d forgotten I’d moved it to a different place for safekeeping in the morning. Emptied the vaccum cleaner and laundry basket on the hunt for it. Duh!
Keyfeatures send some energy this way please. First time round felt a bit of a fraud as I was ok but guess it came and bit me on the bum this time for making light of it!!. Still a 1/3rd of the way through and cant stop now as we are having soooo much fun
Hi jew-thanks for the info about the PICC. I’m not looking forward to it as I’ve got problems with my other arm due to my Sentinel Node Biopsy. At least there’ll be no digging for veins and like you I don’t have a private swimming pool either! Hopefully next chemo on thursday now
hiya ladies
good to hear how well you’re finding it this time round keyfeatures - maybe the fasting is behind it all although I would have thought that it would have aggravated your side effects as fasting is quite full on…
had my second dose on thursday and not been too bad physically apart from the first 24 hours…although definately suffering wiht chemo brain - feel like my head is full of mud today! The chemo session itself wasn’t fun - having found the cold cap perfectly copable with first time round it was really difficult on thurs - my chemo nurse said it must be because i had thinned alot already so there would have been more contact with the scalp. i ended up in tears and had to get it taken off early so am not going to bother next time. it wasn’t working properly anyway as my hair is all over the house. still can’t bring myself to shave it or even cut it dead short yet - at the moment i can get away with wearing a hat and looking like my hair is normalish underneath so will with stick with that while i can. although that pesky wind is a bit of a worry!
fiona - thanks for the heads up on the Artemis trial. I will bring it up with my consultant but I would imagine that it isn’t available in my area (what a wonderful thing - the postcode lottery!) and also that it would be too late to start anyway even if it was because i have already started on my chemo course of 4 x EC, 4 x tax. Am trying not to stress that am missing out - have been told that my consultant is one of the most respected chemo oncologists in the London area so i have to have faith that the treatment path is the right one for my tumour. it’s hard not to worry though… just wanted to ask as well fiona you said that low fat diet was important for those with TNBC - can you tell me why you said that/is it based on research? am so conflicted about this whole diet thing - it does my head in a bit!
I have also booked on to the young ladies forum in brighton so looks like there will be a few of us there…
enjoy the rest of your weekend,
sx
I took the plunge and clippered my hair off this morning, can’t bear the thought of it ending up in my food or all over the bed etc. I did the front and sides muself and hubby finished the rest.
I feel a little exposed and strange getting used to it but it was liberating, made me feel a bit more in control which can only be good.
Nicola x
Well done Niknak for taking control. Sukiem I did cold cap on Wednesday for the second time and have been dreading taking the hairnet off (my safety net). I just decided to take a peak and half expected to see all my remaining hair in the net but was fairly surprised to see I still have a covering attached to my head so the next decision is whether to risk washing the remaing hair?. Still feel like its only a matter of time but think I will wait to see what happens over the next few days. Shocked that the hairs on my legs are still there as I didn’t have many to start with!
Lol
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