Hello lovely ladies,
Not been around for a few days as I've been feeling pretty sorry for myself, but your humour has cheered me up no end.
Ali - I SO love your idea of writing on your bald pate. Awesome.
Sorry if the following rant puts a downer on everyone, but I need to let it out.
After reporting that IV Emend had sorted out my nausea, I wasn't quite prepared for the Tax to come and (literally as you will see) bite me in the bum a few days later.
I had the normal joint pains, diarrhoea and sweats, but wasn't prepared for the attack on my skin.
Nasty, itchy, lumps and thrush.
All solved with Claritin and Canesten.
However, I had been developing - wait for it - a boil on the bum!
I remember telling you that it is still possible to laugh about things even if you have cancer.
Saturday's escapade will be laughed about - just not yet.
Said boil had become very red and angry, so on Saturday morning my hubby and rock, Frank, whisked me off to A and E.
I was worried about protocols here in Spain, but I explained my chemo and my symptoms.
I was immediately taken to a private room, where a doctor saw me within 5 minutes.
Now, one wouldn't normally rock up to A and E with a boil on the backside, but as my immune system is at rock bottom, I felt it justified.
The doctor couldn't have been kinder. She could see I was upset- I thought they would keep me in.
She acknowledged that given my cancer, I would be sick of hospitals, so she said she was going to let me home with antibiotics, but I had to promise to go back on Monday so they could check it again.
If there was no improvement, I would have to be admitted so a surgeon could wield his scalpel at said abscess.
So, later this morning I'm off to get my bum checked again - hubby (who has been checking and dressing it ) says it looks less angry.
I SO hope they don't keep me in - I'm sick of the sight of the hospital.
I'll look back one day and laugh about my visit to A and E with a boil on my bum.
But not yet.
Sorry for the rant.
Oooh Ali, go for it! If you put it right on the top you can't be accused of letting kids see it!
I had mine shaved a week ago as it was getting really sore and I was ending up with a furry collar every day. Now I've done it, it feels better BUT I can see there aren't that many bald patches at all (am on day 11 of FEC 2) and I'm wondering whether I should have cold capped (I was told FEC-T was really harsh on your hair and cold capping would bring on my migraines). Agh! Always something to worry about!
I am constantly in bold beanies and the berets from notanotherbunchofflowers.com which are really nice. Come summer I am going to be stuck though. My wig is still in the box and I think I'll keep that for formal stuff like school events or work maybe.
Blimey, Suze. I'm 55, so they'll probably give me lavender water and talcum powder. Maybe I could lie, I wear Urban Decay and Chanel so I'd be jealous too. Ha, I sound ungrateful now and I haven't even been yet!
I really understand why some of you don't want to be bald in front of others. I think it helps that I'm a massive extrovert so don't mind being looked at. I told my daughter I was going to write a swear word every day on my head. In eye pencil. I said I'd go through the alphabet and tweet them. A for arse, b for b**ger, c.....She said she'd never speak to me again if I did. 😂
I did my LGFB workshop a couple of weeks ago. If you're not a regular make up user it seemed useful as they went through everything from toning and cleansing right through to using brow pencils and eyeliners when lashes and brows are sparse, even talking about using cream blush instead and tricks with highlighter to give us a bit of a glow when we are feeling less than radiant. It was just so nice to be with other women going through the same experience... I'd not had that before as there's no real inter-patient contact where I am. I came straight from my FEC 2 dose into the group and it was lovely to have that to look forward to.
It does depend on what you get in your goodie bag as you use that in the session. They categorise you and your goodie bag by age group and skin shade. I put 'fair' but got a foundation in 04 (I'm more of a pale milk bottle 001 type!) so the categories are broad. I was in the "41-50" age category so got a bit of Estée Lauder and Lancôme cleansers and No7 make up plus some Liz Earle lippy and Clinique moisturiser. As a make up junkie I was ever so slightly jealous (OK, a lot!) of the under 40s who got loads of Benefit, Chanel, Urban Decay and Bare Minerals stuff. So ungrateful of me!! The bagf I had would all cost about £375 in total so it's a fair load of stuff!
You get a perfume included, (I got a ginormous one of YSL Paris perfume) plus all the make up you need to look fab and the ladies who ran mine at Clatterbridge were really lovely (one gave me her number and suggested we meet for coffee as she lived near me).
Ive been reading a few beauty blogs about the best products for our skin, scalp, face while we go through the chemo so if I get some good recommendations I'll pass them on. It's not the most important thing at all but something that helps me feel a bit more...me.
Hi everyone, I have my second FEC tomorrow. I did do the cold cap first time and over the past few days I have been shedding hair a lot. It is going mostly from around the hairline on the nape of my neck, presumably the cap didn't cover it tightly enough. I am in two minds whether to do it again tomorrow. It's funny but it really seems to be the tangible side of chemo that family and friends are latching on to; they say "how are you?" swiftly followed by "and how's your hair?", as you say Ali, it freaks people out. I agree with Blue2, I don't want to walk in to a public place and have everyone know I am having chemo and I agree with Robin, I don't even want OH to see me bald.
I have done the Fast Diet for the last 2 days and tomorrow (too wimpy to fast totally, I had about 600 cals a day) I am not advocating it as it is only anecdotal evidence that it does any good but my SEs were minimal first time round so I stuck with it this time too. I will see how it goes this time. I think it might be like the cold cap, I just feel I have some sort of control when in fact I probably don't at all!
I haven't worn my wig at all. Poor Bex, I feel quite guilty. I'm fine with wraps for work, social events, plus a very thin cashmere beanie for just popping out. I'm pretty comfortable being bald in front of people I love. Close friends, my grown up children and their partners, Chris and my siblings. I would be bald more widely, but it freaks people out and I don't want them to be uncomfortable. Mine you I am very bald now, so I do look a bit alien.
I'm a bit more worried about the summer. Sunhats don't cover in the same way. I might have to do a wrap underneath. My chemo is until June too, so I'm assuming I'll be bald all summer.
I am so booking a LGFB workshop, I love a goodie bag. I'm quite good at makeup, but have a blank spot about eyeliner, so hoping my eyelashes hang on for a bit.
Hope eveyone is feeling ok. This is a very upbeat and measured thread and I feel proud of our January gang. I've got my 3rd EC on Wednesday. Sorry, I've lost track of who is doing what this time round.
I had my lovely hairdresser cut my wig. It made such a difference as I look like me when I wear it. One product he did recommend was something called dry shampoo. I'd never heard of it but if you spray a bit in your wig it gives it a bit of texture and stops it looking so shiny. Really made a difference. To be honest I only wear mine if I;m going out for coffee/meal etc. Lifes too short to wear it for the dash around Morrisons! I'm booked on The Look Good Feel Better but not until the end of March - quite a waiting list. I'm rubbish at make up at the best of times so hopefully the advice will be good for after this is over. x
Blue2, snap, 2 cycles of FEC and lost about 70% despite cold capping. I have wig ready but have managed so far with cotton beany type hats around house with fur band over it outside or a hat. I was very self conscious meeting a friend for coffee on Friday wearing a hat which I left on in the cafe. A different friend came in by coincidence and looked through me until I went up to her ! On the other hand, there were other people in there who had hats on, so in a way we are lucky at the moment that the weather has been hat weather.
Yes to Look Good Feel Better, went last week and really enjoyed it, especially, as others have said, the fab goody bag. The 2 ladies running it were great and it was also good to meet the other attendees and compare notes.
Well what a lovely morning! I managed to get referred to a day centre at the local hospice. I was a bit sceptical and thought it wouldn't be my sort of thing. Quite wrongly, I associated a hospice with pallative care and very old, very ill people. I was wrong. I haven't laughed as much since diagnosis or felt so relaxed. I was treated to endless cups of tea, a 3 course lunch ( cake and custard not so good for Feb Fat Busters!) a hand massage, reiki and a nail treatment. All free. Honestly check out what is available in your local area. I only came across it by chance through another patient I got chatting to. No health professional has ever mentioned its existence or that as a patient undergoing treatment you are eligible. Think I will sleep better tonight as a result! x
Trust me Herceptin is nothing after chemo! In fact the chemo is the worst thing of any of this, when you have the rads you will sail through it all and will not be moaning that it makes your arms ache to stay still for a few seconds at a time. Seriously those ladies that don't have chemo say stuff like that! Not that I wish them any ill but they complain about such trivialities. The room being a bit cold, having to wait for more than 10 minutes past your appointment time when they know you are expected everyday.
You will be just fine, all of this will pass and be a memory before you know it xxx
We all seem to be stressing and worrying at the moment - lets just ride this out and hope for the next period of calm resolution. On the 'growing lump' feeling for those having chemo first, I think there's a 'swings and roundabouts' aspect to that too; I had surgery first and it was found to be more aggressive than the Grade 1 IDC they first thought, and also in the first lymph node which they were fairly confident was clear. This means that I feel maybe they would have gone down the chemo first route if they had the full picture, and also, critically, how do they know the chemo's working when there's nothing identifiable to measure? My onc admitted that they didn't know with this sequence of treatment, so I guess psychologically from our point of view its the trade off of having the tumour out against being able to see that chemo has been clinically effective. I am going to ask my team more about this on Monday as long as I get to see the actual (lovely) consultant.
A bit of dark humour - I went on the LGFB workshop yesterday (yay for the goody bag), and at one point a very young lady asked if anyone was having Herceptin. I said I will be but not at that point yet. She then proceeeded to say how it was the most painful experience of her life etc etc. The poor organiser was mortified as she rattled on about the awfulness of it, and everyone looked really uncomfortable, until another lady who had been in 'deep chat' mode tuned in and said she had it, and it was completely fine. And breathe.
We will get through this, day by day, jab by jab, scan by scan.
Good luck with the move Ali. Try and pace yourself but I've got a feeling you're a roll up your sleeves and get on with it kind of gal!
Don't want to worry you but it's proper snowing here in Durham and forecast is for quite a bit more overnight. Make sure you pack your winter woolies!
Nice to hear from you Nicky. I also hadn't realised that Robin and Mooney were on the second tranche of this. But I suppose it isn't surprising that some people are going through it again. You're both very positive though. I think it's good for the rest of us to see you here and realise that sometimes it does need zapping more than once. Kudos for the way you're both coping. And an extra hug, Robin, because you're feeling bad. Which is entirely understandable.
I'm on tenterhooks as our new house is supposed to be completing tomorrow. The chaps payment has stalled though, so goodness knows if it'll happen Can't settle down to anything right now.
Hi all. Robin and Mooney, I am sorry to hear this is an ongoing saga for you both, I can't imagine how much harder it must be. Scotty and all pre- surgery too, it must be hard to have to wait; I find it reassuring to think that the chemo is zapping whatever rogue cells it finds and so effective treatment is happening, whatever is going on. I almost wobbled because it took so long to get to chemo and I started thinking that maybe I would opt out, maybe I didn't need it after all but I am so glad I didn't do that now. It never feels like scans/treatment are moving fast enough does it? and just when you feel like you are in a calm place for a while and coping well, it kicks you!
Thinking of you all.
Thanks Scotty. It does help knowing we are all sympathising with each other and understanding what it's like. I feel for you having to have chemo first before surgery and can quite understand how you must feel. While the oncology teams obviously know what they're doing, I think only we patients understand the psychological nature of the different bits of treatment we get. I felt exactly the same as you - the crucial thing to me was to remove the tumours. When I was diagnosed last September but the team seemed (to me) to be very relaxed about giving me a surgery date, I felt like taking out a knife in the consulting room and cutting the area out myself! Thinking 'well, at least that will get their attention'. Stay strong and I will try to as well. R x
So sorry Robin and Mooney. Hadn't realised you had both been through this before. It just sounds to be never ending. Fingers crossed for you Robin. Surely you've had more than your fair share of the shi##y luck card. Enjoy York. It's lovely. Might be snowing this weekend.. Must be the morning for wobbles. First one for me for a while. With me being chemo first, I can feel the lump all the time and am getting slightly obsessed about whether it has shrunk (it hasn't I don't think) It messes with your head being aware of it. Just want it cut out and gone - for now. Self indulgent whinge over! x
Mooney, you and I have that in common too, chemo buddy! Mine too is a recurrence - I had DCIS and a mastectomy in 2007. The recurrence discovered last September was in the armpit area, just under my scar. (So, ladies, even if you have a mastectomy, stay vigilant.)
I am feeling upset today. I had to go back to the hospital for an ultrasound following the MRI scan I had done before chemo began. They keep saying they keep finding 'things' which may be nothing but they have to check. Today the radiologist found a lesion in the right breast (all my treatment so far has been for tumours found in left breast) and she took a biopsy of it. So now I have to wait for results of that.
I'm feeling sorry for myself. I thought going through chemo was bad enough but now it's back to scanxiety and waiting again as well.
I'm trying to stay upbeat. It may be nothing. And if it is something they've found it early and I suppose it just means another operation some time (I had my surgery in October to remove tumours on left side).
But I'm going away this weekend - it's my father in law's 91st birthday and we're going to a family party in York. Everyone is going to be asking me how I am and I was going to be able to say 'ok' as this is my good week in the cycle and the SEs have pretty much gone. But now I've got this hanging over me.
So I'm miserable today. Thanks for listening. R x
Tou're as decisive as me Mooney! Thinking I'll have family ones with the wig and maybe have a bald one solo. Hate having my photo taken - too self-conscious! Mooney - when do you get the lump checked? Another thing that seems to differ by postcode. My g-csf are on day 3 for 7 days.
Hi Scotty, I'd go for it now too. You might decide to have the photos done again in 18 months' time but it's not tempting fate in my view, it's who you are at the moment and a lovely family shot might be a boost. Robin would probably take her dog in a wig too (great image Robin! I hope you can sort your arm out by the way).
I had to go through my diaries yesterday to sort some bills out for work and I went through every day since I was diagnosed as part of it. It brought back every appointment and how I was feeling that day but I realised that I have come a long way already. Thanks to Kim for posting, it's great to have someone at the end of the tunnel urging us on.
Welcome to Blue2, that's interesting to hear about Tax, I have that to come too.
Lighthouse and Blue2 - I cold capped and I am day 17 post FEC1. There are some individual hairs coming out now but not clumps yet. I almost want it to just go so that it makes my mind up for me, somehow it seems too good to be true that I might be able to save it, it feels like I'm cheating and not doing the treatment properly.
I think it will be good to get back in touch with the defiant me I used to be and remind myself who I really am and that this version of myself is temporary x
Wow, what a nice offer, Scotty.
If it were me, I'd probably go for it now. I think the whole defiant/cocky attitude is going to be something that you will value later on. You could wait until you're back to 'normal' but hair wise that could be 18 months (assuming 4 months chemo, up to 4 months to start growng, then some length). But only my opinion, and I am all about instant gratification!
A bit off topic but I'd appreciate your thoughts and opinions.
A friends partner, who is a professional photographer, has offered to do a free photo shoot for me, OH and son, which was such a lovely gesture it made me cry (not unusual with all the drugs at the mo!) I just don't know when to do it. I'm a chemo first girl and still have surgery, possible further chemo and rads to go before I even start thinking about reconstructive surgery. As much as I fancy doing a defiant Sinead O'Connor bald headed photo, it feels like it might be tempting fate a bit if that makes sense. I have visions of it all coming back after a year and me looking at the photo thinking you cocky stupid idiot. What would you all do? Thanks x