Chemo JAN 2017

[Jackie1952]

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.

[Suze123]

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.

[Blue2]

Ali, I love the sound of your cursing scalp!!!! It would be a good way of ticking off the days of the chemo cycle too.....day 6=F, day 16 =P, etc etc. You'd always know where you were!!!

[Blue2]

Hi Beedot
Ive had those questions from both my sister's in law about 'Have you lost your hair yet' - almost like its a marker of my progress, although it's probably because its the only side effect of chemo apart from vomiting that most people are aware of. I find it really upsetting though - I'm a really private person and because of the hair loss, feel that my illness and treatment is right there for all to see, which is why I'm feeling so anxious about finding a solution. Maybe its just a process i have to go through and it is a minor problem in the greater scheme of things. I used the cold cap for round 2 a couple of weeks ago, even though I'd lost lots of hair already by the time treatment came around. I haven't yet started the big shed this cycle. I'm hoping it won't come!!!!!! I live in hope.
With the look good session tomorrow - I'm 45.......unfortunately don't think I'll pass for under 40! Drat! But if i have a good nights sleep, i might try!!!!!

[ali1961]

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. 😂

[Suze123]

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. 

Xxx

[Beedot]

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!

Beedot x

[ali1961]

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. 

Ali xx

[Scotty66]

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]

Thanks Robin, I think you're right about getting the wigs cut to make them more 'me'. They are both really nice, but too nice if you know what I mean?!? It's definitely worth a shot.

[RobinJ]

Blue2, I recommend you take your wigs along to a good hairdresser to trim and shape them for you. Trevor sorbie runs a charity called my new hair - if you Google it you can get recommendations of local hairdressers who will trim your wig. It's not free but does give you added confidence. As for hats, I'm wearing them indoors all the time, even at home as I don't like my husband seeing my bald tufty bonce. I even sleep in them! Partly for warmth. If I still have to wear hats in the summer I'll switch to cotton bandanas - I've got one from Annabandana which is a good source. I don't think people notice if you keep a hat on indoors - so long as you don't wear a Busby in the cinema! R x

[Blue2]

Yes Slowski, winter is our friend, head coverings wise!! I have also kept a hat on indoors and not felt too bad about it, but was with a friend who knows of my diagnosis and she kept her hat on too, to support me!
I am covering up my bald patches with toppik for indoor socialising and work, but im very self concious, and I'm wearing woolly hats the rest of the time. Around the house I'm not doing either, just being au natural, as luckily, people rarely come around on spec!
My chemo continues to June though, so I am concerned about what to do as the temperature rises if my hair loss continues.... See how much I like to be prepared??! It's February and I'm trying to plan for June......!!

[Slowski]

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.

[Blue2]

I'm off to a Look Good Feel Better workshop tomorrow and am really looking forward to it! Has anyone been to one? I am interested in finding out how to fake eyebrows and lashes as mine are thinning now and I feel it's only a matter of time. I like to be prepared too!! My skin has become really dry on chemo so any specialist advice for that tomorrow or on this group will be gratefully received!
Hair wise, I'm struggling. I have bought 2 wigs and dont like either! I just cant face wearing them and they feel so unstable on my head! Although I've used the cold cap twice now and still have about 60-70% of my hair, I have some large (and visible) bald patches. I've been using a product called toppik to fill them in quite successfully, but it's becoming more difficult and with further hair loss it's likely to become more obvious. I have only told a handful of people of my diagnosis, so at work, in my village, socially and the school run I'm trying to pass myself off as if nothing's happening!!!! I can't bear the thought of people staring at me or talking about me, which I know sounds pathetic in the scheme of things, but worries me enormously.
Any suggestions?

[Scotty66]

I know what you mean. I was a bit insulted/ worried at first. I'm not dead yet!! It's so not that. For mine you needed a GP referral. Secretary filled out a form basically. Would recommend looking into it x

[Mooney]

Sounds great Scotty, as a matter of interest how did you get referred. There is a day hospice that seems to run similar service here. I am wondering now whether to go one day. It says it's for people with 'life limiting' conditions including cancer (!). Don't quite put myself in that category.!
Have a good weekend everyone.
Hugs
Mooneyxxx

[Scotty66]

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

[blueash]

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

[Slowski]

Hey everyone,

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.

Hugs,

Slowski X

[Wtp2016]

Congrats Ali!!! Yay! Boo to the cleaning though 🙂
We moved into our place in Jan and settling in has been a good distraction.

Egg - I have the same feeling re an extra lump on the other side of the same breast. It's closer to my lymph node scar. I was getting my husband to look last night and he thought maybe it was something to do with that surgery but I don't know. It feels tender, can feel it from the inside. Def flatter and wider - unless I missed the width when the lump was sticking out so much. I guess they change shape and start to break down but as no one tells us, we end up speculating all sorts.

Does anyone else find that the doctors don't give anything away? Understandably, they can't commit to anything until they have hard facts but sometimes I just want to know what they are thinking.

I'm coming out the other side of round 3 but it's been a lot harder this time to play with my daughter and give her attention - even stay awake to read her bedtime story. I'll plan to do something fun with her tomorrow but can't help feeling guilty.

Blue - it must be hard knowing the lump is still there but not being able to tell if there is any change. I kept thinking of mine as a ticking bomb and just wanting it out ASAP. Hopefully after the MRI you'll get some good news x

Xxx

[Scotty66]

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!

[ali1961]

So that wasn't a great night's sleep. I'm banning myself from prodding in the evening, especially because now it seems to be back to its original size! (Feel a bit of an idiot TBH).

I have an MRI in two weeks, after my third round of EC. Like Scotty, I'm HER+ and my onc wants to check progress before we move into round 4, then Herceptin, docetaxel etc. He did have a prod last time, but since I changed oncologist he didn't know what it had done. Ha ha just thought of an inappropriate comment but will restrain myself.

It's really difficult when you're not up to doing things, but look the same as when you are. I don't have children at home but that must be more challenging. Kudos to those who are managing all that.

Ok, excitingly I think we are driving to Manchester in a bit as house is going through today (exchange and completion). It's probably going to be filthy so I'll be cleaning all weekend. This is unnatural- I never do housework normally.

Have a good day all. Anyone having treatment?

Ali xx

[EggG]

Wtp and Ali - like you my lump was grade 3 fast growing and in node. I have been prodding non stop and although it is harder to feel it just seems a different shape if that makes sense. Flatter and wider? Am also sure I can feel another lump on the other side of same breast although onc couldn't seem to feel it. I think I am being paranoid! He did mention that I would have another scan at some point maybe after 2nd round but hasn't mentioned again so I might ask when I next see before round 3. Will it be ultrasound or MRI do you think?
Day 5 today of EC2, steroid free but now to start the gcsf jabs. Still feeling vaguely nauseated and also guilty as older son going for secondary school interview today and I just didn't feel well enough to go with him. So now anxious about that as well! Isn't it funny the other things that go along with the chemo - I really do feel bad that I can't do everything I would normally do with my 2 kids.
Hope everyone has a good day
Egg

[Blue2]

I still have my lump too, but mine can't be seen or felt. I'm not sure if it being invisible is easier to deal with as I don't have a constant reminder, however it does mean that not even the onc can know what it's doing in response to the chemo or even hazard a guess. No rulers from them, no poking by me, as it would be fruitless.
I think because no-one can see what's happening, I'm having an MRI next week after T number 2 and before 3 to see. I'm pleased that I don't have to wait any longer tbh. I hope I have positive news to share after that to boost all of us still with our lumps in place that this is a good way of doing things!!! When they explained to me about chemo first it made sense, to ensure I was having the correct chemo which can be changed if necessary, and stopping any circulating cells ASAP, but it is hard, knowing the lump is still in me I still have breast cancer. 😞

[Scotty66]

Make that 3 of us. It's so hard not to poke the blooming thing all the time. I don't see onc for another month and have to wait until chemo 5 for scan. Takes its toll mentally. Feels like that part goes untreated?

[ali1961]

Oh wtp just been thinking the same myself. Mine isn't as big as yours but it came up really quickly and is grade 3. I'm sure it's wider. I have to wait a month until they do my next MRI. I have been trying not to think about it but it's hard late at night.

The only thing I can say is that stressing isn't good and may be actively bad for us. I'm going to try reading and keep my hands off the bl**dy thing if I can.

Sleep tight

Ali xxx

[Wtp2016]

Oh Robin, I feel for you - waiting on scan and biopsy results is torture. And you ladies going through this for the second time, as if this isn't hard enough...

I've been driving myself mad with my lump tonight - keep finding extra bits after my ultrasound at the wknd - was hoping they would say it had reduced loads but it's still really wide and now I think I can feel it bigger than before but in another shape.

I was meant to have surgery first as original biopsy was grade 1 IDC so they were relaxed - even though I wanted it out ASAP (same feeling of wanting to cut it out myself!). It was a huge fast growing lump, over 10cm and the docs didn't believe that I'd only just found it. When they realised it had spread to my lymph nodes and saw it had visibly grown in the 4 wks since diagnosis, they realised it was not all grade 1 and got worried, cancelled the surgery and put me on chemo round 1 just two days later. It was pretty scary. So now I'm worried that the tumour is super aggressive and does that mean the rogue cells are?

So easy to go in circles with this!

Sorry, having one of those nights! Round 3 has taken its toll on me this time. 1 more EC to go then I'm halfway though this part...

Take care ladies xxxx

[Esther c]

Robin & Mooney - I don't post regularly but I wanted to send my love to you both. This is not an easy journey for any of us - especially if you are going through all the anxieties for a second time like you two. You are strong ladies and it seems a few of us have had difficult days today - I know I've had a low day today- thoughts are with you. Xx

[Scotty66]

Robin

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!

[Mooney]

Hi Robin
I am so sorry, having to go through the waiting again for the biopsy results an absolute bummer. Hopefully they are just being ultra careful and everything will work out. But know what you mean about family celebrations, I suppose you just have to try to put it on one side and put your positive 'face' on for the weekend. I have all my fingers toes and everything else crossed for you. Just throw yourself into weekend and try to enjoy, easy to say chemo buddy, difficult do.When do you get your biopsy results.

Scotty my surgeon wanted me to have chemo first to reduce the tumour. But my oncologist was very sure that it could be removed safely and surgically first with chemo after. So that's what we went for.I am so pleased I must say as i am just pleased to get rid and I can understand your anxieties. But the chemo is zapping not just the lump but any stray cells so stay strong and positive. Some days seem full of wobbles though! I think when I looked back at my last cycle there was about day 7 or so when everything seemed gloomy I think everything messes with your head!
Ooh Ali I hope it all works out with your new house. Exciting!
I am very positive about things this time round I feel the chemo, 10 years of hormone therapy and radiotherapy will kill everything! I was so grateful not to have chemo time as I was so frightened of it. Big mistake of mine I think ladies. We go through all this to ensure we have a future with our families.It's not as scary when you start, the thought is worse than the actuality. Fear takes over unfortunately.
Sorry for the long post!
Hugs
Mooney

[ali1961]

Hi All,

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.

Ali x

[nickyh]

Hiya everyone. It's been a little while since I posted but I have been reading all you have written and am still routing for us all.

I am now day 6 of Fec 2 and the chemo fog is finally lifting. Definitely took more out of me this time, fortunately the sickness was definitely better thanks to being given Aprepitant, if you are struggling with nausea ask for this.

I totally get the hair issue, I did cold cap for 1st round, mainly because my children were worried about what I would look like without hair but prior to 2nd round my hair started to shed quite a bit and I found it more stressful having to constantly worry about it and not being able to wash it properly that 2nd time around I decided on the day not too bother and feel so much happier now that I have control of my hair back. I have had it cut short but although it is still shedding I am still sporting a pixie cut, though think by the end of next week I may be on to wig stage.

Big hugs to everyone.

[Beedot]

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.

Beedot x

[RobinJ]

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

[Scotty66]

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

[RobinJ]

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

[Mooney]

Haven't said too much about it Scotty so probably you didn't know. Know what you mean about chemo brain though. I often wonder if I had had chemo first time round if it would have recurred. So happy to throw everything at it this time to get rid of the beggar!!!
Mooneyxx

[Scotty66]

loody hell. Hadn't realised it was a recurrence. Or rather don't seem to retain info in the sieve that is my chemo brain.

[Mooney]

No idea Scotty. My cancer was a recurrence it returned in the lymph glands in my arm pit. So i have had a full excision of all my lymph glands, chemo then radiotherapy then hormone therapy. The surgeons and oncologist are very positive it's treatable. So....... no lump to measure all gone. Just catching those pesky stray cancer cells.
First time round excision of lump then radiotherapy then hormone therapy. So chemo all new to me and a bit shell shocked by it all to be fair!!!
Love and hugs
Mooneyxx. xx

[Scotty66]

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.

[Mooney]

Hi Scotty
I am not sure what I would do.I definitely could not do the brave defiant bald photo. I am not brave or defiant enough to have a bald photo.! However I think I would like the idea of a photo now. So i think I would have one now and one later. Not much help Scotty!
Mooneyx

[lighthouse07]

Evening all - jackie fortunately no experience of that se on chemo sorry not sure what advice to offer apart from standard cream/pessery again could a pharmacy advise? Mooney we camp in tangham rendelsham forest - very basic site but great for getting out to lots of places walks immediately off site, two castles short drive aways, Aldeburgh for fish and chips various river walks sutton hoo viking ground. So lots to do if u r up for it. Not sure ifcthat site opdns until late march but i guess if you google around there might be something. Egg my gcsf plan is also day 5 to 10 and i understand that fits with the physiological growth of the white cells/neutrophils so guess its not too early in the cycle but i wonder if different regiemes need it to be at different times? Scotty photo now i reckon! Lindieloo - i am doing well today ty manage to cook dinner/washing out etc but all in my pjs ! But im not waking at 3.30 to be fair! Blue2 and Beedot agree re children that is the only reason ive attempted the cold cap as my youngest is struggling with the idea my hair will go. My shedding didnt really start until day 20 of first cycle. I did find it more painful this time as i guess my hair was thinner so guess i will take it a day at a time but the shredding is driving me crackers! Have a wig (boxed and not styled yet) so do have a back up plan.just got to get confidence to wear it and must learn how to tie a scarf im so ungirly its going to painful! Love to all hope sleep comes easier to you all tonight xx

[Beedot]

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.

Hugs all,

Beedot x

[Blue2]

Hi Lighthouse
I am cold capping. I have had 2x T so far and like you, am shedding madly. Im vacuuming clumps every day! Every time i touch my hair, some comes out. I've lost probably 30 - 40%% of my hair already and do have bald patches on the top of my head which im covering up quite successfully with something called toppik. It was important to my children that I looked as samey/normal as possible which in their eyes includes my hair, so I plan to continue cold capping. Like you say, it may just be delaying the inevitable but every extra week of my own passable hair is an extra week of same/normal to the children. And also, thinking positively, its always possible that i might not lose any more! I must admit though, my hair and what to do about it occupies a lot of my thoughts and to some extent, not cold capping might have been better for me, mentally!!!!

[Blue2]

Hi Egg
On tax, I have 16mg of steroids a day for 3 days - the day before, the day of chemo and the day after. The gcsf injections I have from day 2 for 7 days!!!

[Scotty66]

Thanks Ali

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

[ali1961]

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!

Ali xx

[Scotty66]

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

[EggG]

Hi lindie no I meant the gcsf injections. I have to take those from day 5-day 9. I have 3 days of steroids to take from day 1-3 and it's two lots of 4mg.(8mg total) I try and take both before noon so that I can sleep but on chemo day as they give it to me IV in the afternoon it's impossible to get to sleep afterwards. I hate them!!

[Lindieloo]

Didn't say sorry , my steroids start on day two for four days