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February 2019 chemo starters

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Re: February 2019 chemo starters

Hi LucyLump 

 

I'm sorry to hear that FEC has not reduced your tumour but that is not unusual.  As I said I am on  trial - ROSCO - which is looking into the ways in which HER2 responds to FEC and T. Basically depending on certain elements within the cancer some respond better to FEC than T and vice versa. In my case I had 4 rounds of FEC which shrunk the tumour but was not so successful with my lymph nodes. The aim eventually is to give HER2 bc a better targeted chemo treatment. After surgery in June I am continuing chemo treatment with 4 rounds of TC and have been reassured from my medical team that the TC will definitely destroy any cells that may have escaped. You should find that the T will do what the FEC may not have done. Sometimes a tumour doesn't appear to have responded to chemo when it infact has due to scaring. One advantage of having chemo 1st is that very often we get to see and feel the results of chemo doing it's job. I've seen that Edinbird has also told you of her experience so hope that between us we've been able to offer reassurance. I'm also TNBC. The main thing to remember is that after surgery your unwanted squatter will have been well and truly evicted. 

Wishing you all the best and please pop in any time for whatever reason. xxxx  

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Re: February 2019 chemo starters

By the way, Sarah, I just showed your photos to my husband and he said you look like you're in your late 20s. He is a fan of the short hair (on me as well) and is trying to persuade me to keep it like this. Unlikely I think!

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Re: February 2019 chemo starters

Hi everybody,

 

Had a hospital appointment this morning and there was me thinking I would get a mammogram but all I got was a very quick chat with a breast surgeon and a quick feel for lumps. None detected, I'm pleased to say but I'm disappointed that the scan won't happen until December. Was hoping I could go back to work knowing I'm NED but looks like I'll have to wait and see.

 

Still struggling with sore mouth and stiff joints. Don't know what's causing what to be honest. Herceptin, Tamoxifen, residual chemo effects....who knows?

 

Sarah, your hair looks great! You've got really good coverage and I'm sure it will grow quickly now. I collected my ice hockey season ticket yesterday and we also had a chance to meet the players. I'm excited for the season to start and can't wait for us to play each other so I get to meet you!

 

Susie, did you sleep any better last night? I actually woke up feeling cold for the first time in ages and had to get a blanket. Talk about one extreme to another!

 

How is everyone else doing?

 

Hope you're all having a good day.

 

Sar xxx 

 

 

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Re: February 2019 chemo starters

No problem! 😊 I know a couple of people in Inverness but they finished their treatment a while back. Hope it’s warmer up there than it is here today I need to go out to collect my doctors note but it’s windy and I’m freezing and I need to walk!

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Re: February 2019 chemo starters

Thank you so much Edinbird. You're a star. That is really reassuring. Plus Edinbird is a fab name. Wish I'd called myself Inversnessbird now! Xx

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Re: February starters 2019 - yes, we rule!

Having a tea break ( and a banana- give me sugar) at work. The training is very good. Not sure I will last till 4 pm though!

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Re: February 2019 chemo starters

Hi LucyLump xx yes me too, FEC only shrunk my lump by a millimetre. But my team were really pleased as stopping it from growing means it has worked! If it had gotten bigger it would not have.

 

T shrunk mine a lot more, but I didn’t have a complete response so I’m getting Capecitabine after rads. I’m triple negative though so I can’t take anything else, the extras you are having might be the protection that you need. Try not to be down, we all hope the chemo will zap it to nothing but it doesn’t seem to have a bearing on recurrence whether it all disappears through chemo or not. They’ve stopped it growing that’s definitely success xx

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Re: February 2019 chemo starters

Hi LucyLump

 

Just seen your post, I'll reply in more detail later when I'm a bit more with it😪😪😪😴😴 (chemo fatigue). My treatment plan is slightly different to yours as I am on a trial, so chemo, surgery, chemo with rads to follow. FEC wasn't too good at destroying cancer cells in my case.There's a couple of others who've had chemo first so they may get back to you too. 

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Re: February starters 2019 - yes, we rule!

Loving your lashes and brows Sarah!  I reckon your hair will go curly

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Re: February 2019 chemo starters

Hi LucyLump sorry I cant help you as I had surgery first but there are a few people on this thread who had surgery after chemo so Im sure they will be along to advise.  xx

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Re: February 2019 chemo starters

Hello, hope you don't mind me popping in from July starters. I am half way through FEC-T and just about to start T plus herceptin and Perjeta. Have just received a letter through the post from my breast surgeon to say that the FEC has not reduced the size of my tumour so disappointed. He does say that this is often the case and that the targeted drugs in the next 3 rounds of chemo are more likely to make a difference. I just wondered though if any of you had had this experience as well? Xx

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Re: February starters 2019 - yes, we rule!

Evening all, and evening Dibley!  Nice to see you again 🙂

 

Hope everyone has had a good weekend.

 

Susie, tech support to the rescue 🙂  As this site doesn't give the option to rotate photos,  it will always load them however they default in the camera.  Which might not be the way up you would want.   I get pics ready for upload in an app called PicSayPro (it is free).  You can use the same app to resize if the photo is too big, crop it, rotate it, put text on it, etc.

Eg:1567372638-picsay.png

 

Marlyn, Edinbird, Sar.... I'm loving all the barnet pics!

 

Edinbird, your regrowth undercut is getting really long!

 

And Marlyn and Sar, you are both super curly!  Mine has a little wave by/behind my ear but so far is pretty straight:


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It is super grey though.  Nobody at work believes me that it was mousey brown before, they think I've been dying it bright colours for years just to hide the grey 🙂  If anything I prefer the grey to the mouse.

 

Seaside, sorry to read that you are getting bad side effects from your new meds 😞  Hopefully they will settle down soon

 

All your different exercise options sound fun!  I've mainly been swimming and doing aqua aerobics as it is just such a bonus to be back in the pool again.  I need to do a bit more out of the water too.  Was supposed to go to zumba this morning but ended up staying in bed an extra hour instead 🙂  might hit the gym tomorrow....

 

Marlyn as per special shampoos, I have no idea if anything really makes a difference, but I have that caffeine head and shoulders that I shared a pic of before in my gym bag, and at home I have a solid shampoo bar that I got off etsy that claimed to have magic hair growing powers:)  it is oats and nettle or something.... I remember sharing the link on here before.

 

Susie I'm really glad that you are holding up pretty well with this second round of chemo.  Nearly at the finish line now x

 

Rosina, best of luck for tomorrow going back to work.  I reckon you will enjoy it.  Makes the day go quick and wears you out for a good sleep at night 🙂  

 

Grapefruit for breakfast, I take it? 😄

 

I hope you enjoyed the party last night even if you did only stay for an hour.

 

As for me, I've had a nice day.  It was my hockey team's launch day, where they introduce the new team to the fans, unveil the new shirts for the upcoming season etc.   It was great to be back at the rink after the long summer, and to see all my hockey pals.  Last time I saw them I'd just started chemo....20190901_133747-picsay.jpg

 

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I'm really looking forward to this season as, when we play Milton Keynes, I get to meet Seaside Sar!!!  🙂 🙂 🙂

 

Then I came home and worked on another collage/painting thingy, which turned out ok.  This one is going into a comic book themed secret postcard auction to raise money for a charity called Little Heroes, which provides comic books and comic book making kits for kids who are stuck in hospital for long time periods.20190901_202552-picsay.jpg

 

Take care all

Sarah x

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Re: February starters 2019 - yes, we rule!

Going out for a walk after another 2 hour nap 😴.

Tidied up the front garden ( a bit) with my son :

 

Echinacea, poppy heads and verbena bEchinacea, poppy heads and verbena b

 

When you say you like grapefruit to H1When you say you like grapefruit to H1

Re. Hair mine is grey and curly. Shampoo wise I go into TKMaxx and look for something interesting.

Current find : a French brand that has rosemary, ginseng, burdock and floral waters ( 😀) called phytema. Sounds lovely and it says it’s against hair loss.Let’s see if it works!Let’s see if it works!

I was a party pooper yesterday, I only lasted an hour. I really am saving myself for tomorrow 🤗

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Re: February starters 2019 - yes, we rule!

Hi everyone 

 

Loads to catch up on.

 

Edinbird love the Lego, I'll have to raid the loft and search out our son's cashe of Star Wars stuff. I'd forgotton what fun it could be. I've ensured that Yoda still has pride of place on his unit in his sitting/tv room. Thanks also for contacting Wolvesgirl. There seem to be quite a few of us TN girls between our group and September's group so I'm finding it all a little less isolating and scary. Just remembered if the evening primrose isn't successful you could try starflower oil.

 

Daisydi as for HRT I'm glad that I am one if those people who was ready to let nature take it's course and did not take it. Perhaps the evening primrose got me through it so it was never a decision I had to make. As for the reading I knew quite a bit about bc and Herceptin and Tamoxifen but didn't realise that some b cancers don't respond to these treatments so needed more information. 

 

Implausible, it must be quite uplifting to look back and see how quickly your hair may grow in the coming months. Love the colours and just think you've got plenty of time to decide which colour or colours to for first. As for the chemo it was disappointing that I've ended up having 4 rounds of TC after surgery but I had plenty of time to consider whether to go on a trial or not. As I was randomised by a computer there was no guarantee I would receive the right chemo mix for the elements, for want of a better description, that were within the make-up of Gremlin. Some respond better with FEC some with TC. Had I had TC prior to surgery it may have both shrunk and eradicated the cancer cells and I would have had 2 more cycles after surgery to mop up anything that had escaped. Had I had the conventional FEC then T then I probably would have been in a corner crying my eyes out if I needed more chemo afterwards😭😭😭😭, as in our strong and courageous girl Edinbird. 

I had my low point but I think I've got over that now that I've only got one chemo session left. It's been a long time coming. Fortunately chemo has been relatively easy for me. Perhaps having a break gave my body a chance to cope with it all. Also the T is not too high a dose as it is being given with the C. Like you I pop in and read other groups threads aswell and find it encouraging too.

 

Marlyn, I think my hair may be similar to yours. It's lurking under the hair I have managed to hang on to. The big reveal will occur a week on Tuesday when I ask my hairdresser to cut everything to the same length. The bits at the sides are short, curly and grey🦍🦍🦍

 

Back to you Edinbird, it's a shame my hair won't grow back ready dyed. There's nothing wrong with straight and same colour.  

 

All the Best to you wonderful peeps. I don't know what I would do without your help, support, humour, and everything else. ❤❤❤❤xxxxx 

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Re: February starters 2019 - yes, we rule!

Thanks shi,

trust me....already do the castor oil and red dot shampoo bar....and just read on a thread the fast products....been reading mixed reviews on that one....used to use the plantur years ago, it didn't convince me.....keep the tips coming though....much appreciated!! Lol xxxxx

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Re: February starters 2019 - yes, we rule!

I’m not... but out of all of us you’d probably expect that. Just back to my usual shampoos which are generally the cheapest for greasy hair I can find! 😂 and also using the Simple sometimes since I have quite a big bottle. I guess I might need that again during the oral chemo. I’d like my hair to come back somewhere in between how thick it was before and how thin it is now. Still can’t be bothered to get it cut, there’s a special salon in Grangemouth for people with cancer I might try it out one day see what they suggest for when the new growth on top starts to cause me issues!

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Re: February starters 2019 - yes, we rule!

Help the bonce tips 😁😁Lush new shampoo bar (like a red dot) and extra dark Jamaican black castor oil rubbed on bonce for about 30 mins before shampooing 😁I’ve known others use that plantur 39 and one called fast from boots I think 👍👍hope this helps 😘😘💕💕Shi xx

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Re: February starters 2019 - yes, we rule!

Are you using any special shampoos to speed up growth? As you all know by now I'm an advertisers dream.....xx

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Re: February starters 2019 - yes, we rule!

I'm getting dizzy with all these heads and curls!  My regrowth seems to be white and curly!

Seaside sorry you are still suffering with these nasty drugs x

Good luck Rosina for going back to work.  You are amazing!

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Re: February starters 2019 - yes, we rule!

I cold capped but there was such a huge difference in colour between my longer locks and my regrowth that I had to take drastic measures and go for the pixie cut. Hopefully it will grow quickly.

 

 

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Re: February starters 2019 - yes, we rule!

Seaside, I thought I was looking at my own pics then! Remind me....did you cold cap? Or is that from baldylocks? Xxx

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Re: February starters 2019 - yes, we rule!

Hi ladies,

 

Sorry for the silence. Forum wasn't playing ball again.

 

Had my trastuzumab at home the other day and have had some annoying side effects like pins and needles in my hand and a very sore mouth. Boo to that. Think I preferred herceptin which didn't really affect me.

 

Haha, Marlyn we could be twins. I had a little haircut the other day!

Top of headTop of head

 

Back of headBack of head

 

Played badminton this morning with husband, son and his new girlfriend. It was good fun.  Also returned to aqua aerobics last week and tried out a barre class. All good. Glad to do some normal things again.

 

Sarah, Mickey's Halloween party was started in August for the first time this year according to my daughter. It still sounds as you described it. Lots of people were dressed up and we came away with a ton of sweets. 

 

Daisy, I'm so sorry to hear you're suffering with your skin and also that your Mum is having such a rough time. It really doesn't make getting old very appealing when you hear how difficult it is to get the care that is needed.

 

Edinbird, I'm so pleased you had good news. Now we just need your work situation to be sorted. Your hair regrowth looks really good.

 

Susie, hope you're able to get some sleep tonight. At least the weather will help as it is getting a lot cooler.

 

Rosina, good luck for your inset day tomorrow. Hope you enjoy being back at school.

 

Trying to reply from memory here and now I've lost the plot...so if I haven't mentioned you, I hope all is going well and I love you all loads.

 

Sar xxx

 

 

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Re: February starters 2019 - yes, we rule!

My regrowth seems positively boring - straight and same colour. Thank goodness for that 🙂

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Re: February starters 2019 - yes, we rule!

Lol, posted without saying anything.....getting a chemo curl now.....

 

ignore my old lady cushion....you gotta do what you gotta do...😹

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Re: February starters 2019 - yes, we rule!

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Re: February starters 2019 - yes, we rule!

Hi everyone 

 

Look who's come for a little holiday this week and made himself at home in our summerhouse already🐕☺. Not sure why my photos come out sideways. Perhaps tech support - Implausible - could help?😃😃.  Will read posts and catch up later. Have a lovely day xxx

 

DibleyDibley

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Re: February starters 2019 - yes, we rule!

👍to life Mel honey, I started using round 2 and no more casa nhs stays. I also had a steak a day too and chemo reduced so not sure what it was, but the life Mel honey was recommended after I ended up in casa nhs 1round back in oct17. Thank you all who are 👭👭jumping on other threads and 👭👭❤️❤️Being there for others ❤️❤️You are amazing 💕💕Shi xx

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Re: February starters 2019 - yes, we rule!

Yup that's basically how I was.  My sister bought me 3 tubs and I was super cynical.  But as it seemed to be doing the trick for the first 3 cycles i also didn't dare stop, so stumped up the £90 for the remaining 3 tubs myself....

I still have no idea if it actually did anything, but it tasted nice! 🙂

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Re: February starters 2019 - yes, we rule!

Just a quick jump in on the lifemel honey, I took it at the very start and was always told my white cell count was excellent.....who knows???? But I was too afraid to stop.....just in case......xxx

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Re: February starters 2019 - yes, we rule!

Ha this site does make me laugh with which words it chooses to bleep out

 

My censored word in the post below was 

 

V o y e u r

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Re: February starters 2019 - yes, we rule!

Morning all

 

I'm having a lazy lie in today after a busy old week.  So I have time to say hello to my ladiezzzz  🙂

 

Marlyn.... Swindon ain't that gangster.  Turned out a couple of days after the big incident that the gun was actually a starter pistol, so nobody was in any real danger.  Still the most exciting thing to happen round these parts in the 20 years I've lived here!

 

Daisydi really sorry to hear about the problems with your neck post rads, and your mum, double whammy!!  I hope you get improvement/movement with both soon. 

 

It is so difficult finding the right care for elderly parents 😞  When it finally got to the point where my dad really couldn't manage any more at home alone, even with carers popping in, my sister and I started looking at care homes.  We must have seen 10 or more and it was all so upsetting.  We couldn't find anywhere that we were entirely happy with, to the extent that we were trying to work out if we could somehow afford a full time carer for him in his own home (mainly by spending his own savings).  And then circumstances overtook us and he ended up in hospital.  People live so long nowadays and there really isn't sufficient resource in place to make sure that people are really in a place to actually enjoy, not just endure, their final years 😞


I kind of dread getting old.  But on the other hand, I don't want to go just yet!!  🙂

 

Nettie, I hope those grandkiddos (and Murphy 🙂 ) aren't running you too ragged!!  At least you'll sleep well when you get home, probably non stop for a week 🙂

 

Trixielady - holidays are definitely the best medicine.  Glad you got out there and I hope you are continuing to have a wonderful time

 

Rosina!  Walk in silence and only chat over meals??!!  Was this hike organised by a monastic order???  😄  I would have REALLY struggled with that.  I'm a horrendous chatterbox.

 

Best of luck with going back to work next week x

 

Daisydi - you mentioned arm and leg aches and wondered if they were down to the anastrazole.  I am still getting these, especially when trying to get off to sleep at night when my legs can ache so much I sometimes have to take a paracetamol just to get to sleep.  And I haven't started any hormone treatments yet.  In fact I'm not on any medication at all at the moment except my normal blood pressure tabs which I've been taking with no side effects for 10 years.  So I reckon it is down to the longer term effects of the chemo.  It does feel like it is getting better as time goes on....  Straight after chemo I had to take codeine for it every night.  Now it's more like a single paracetamol once a week....   so fingers crossed it will eventually go away.

 

Susie so glad that you now only have one more chemo to go.  You've been an absolute star. Must have been so difficult having to go back 😞 I think if they had told me "oh by the way you now need to go back for 4 more chemo cycles" I'd have been a mess of tears in the corner.  I really did not enjoy chemo at all!  Rads were such a doddle in comparison.

 

Daisydi - back to you- maybe the couple of blokes could deliver the couple of blokes' hankies and stay for the afternoon 🙂

 

And on a cleaner note, that windmill photo is lovely!

 

Edinbird, I'm grinning at the thought of you clearing Boots out, glad that you've been given the all clear to take supplements to help with your hot flushes and sleep deprivation.  Really hope you can get back into a decent sleep pattern soon.  The world looks so much brighter after a good kip.

 

As for your boss, definitely get occ health on his  back.  Plus I'd ask Macmillan/Maggies or the like for their experienced advice on what they would suggest is reasonable in terms of how far you could commute daily and how soon....

 

Rosina, if your eyelashes are anything like mine they will literally reappear overnight.  One day I had none, the next day there they were.  A little shorter than before but all present and correct.  I can wear mascara again!!

 

As for hot flushes = lower risk of recurrence, I'm in trouble then as I haven't (at least yet) had a single one.  Somehow went through the whole menopause without noticing!  Oops 🙂 

 

Susie I don't blame you for putting the book down.  There is definitely a fine line to tread with how much we read/think about this cancer stuff.  On one hand it can be helpful to read inspiring words/ thoughts from someone who has been in the same position.  But on the other hand I think our brains need a break from it altogether sometimes.  It doesn't help to dwell and obsess.

 

My main thing I like to do when I've got myself down a worry rabbit hole about recurrence and mets and all that stuff (I'm a bugger for getting myself in a temporary tizzy about recurrence stats), is to look at recent updates on the 2018 and earlier chemo starter threads.  I do feel a little like a **bleep** looking at their private ish chats, but it is so encouraging to see people a year or two further on than us, getting on with their lives, fit and healthy, looking great.  Really reassuring. 

 

In the same way, I hope that Wolvesgirl (hi if you've popped in here!) can get some reassurance from us.  Most of us ended up in hospital with an infection or high temp with suspected infection at least once in our chemo journey.  And for some of us that hospital stay was pretty hellish!  It is unfortunately a fairly common occupational hazard of chemo.  But here we all are, still standing (albeit with achey legs 🙂 ) out the other side (or mostly out the other side.... Susie will be there soon!).

 

I popped in the August 19 group and saw that someone had recommended the lifemel honey to Wolvesgirl for keeping the old neutrophils up, and I can second this recommendation at least from an anecdotal point of view.  My sister bought me the lifemel honey to take morning and night during chemo and I was a little dubious about it, it is crazy expensive and I couldn't see how honey would make a difference to my immune system.  But it tasted lovely, so I figured where's the harm.  And not once did my neutrophils drop down.  So I never had any chemo delays.  And even when I was in the hospital I never went actually neutropenic.  So maybe the honey helped?  Who knows.  Worth a try though if you have the cash spare (it is £30 a tub, and each tub lasts one chemo cycle)

 

Also - Susie - my rads went right up to the neck/clavicle too , and I was lucky to get away with no skin issues.  So fingers crossed you will be ok.

 

Rosina - in my experience it doesn't matter a jot which veg and in which ratios you throw into a veggie soup, they always taste delicious. I chuck any old random mix of stuff into my soup maker 🙂

 

Hope you had fun at your neighbour's party and that the weather improved for you.

 

Edinbird I hope you are feeling better today after your lego inspired stiffness:)  worth it though, it was a cool result.

 

And stop with those rain dances Daisydi!  Nice and sunny here in Swindon and I'd like it to stay that way as I need a walk later after skipping out on my zumba class this morning in favour of this lie in 🙂

 

That's me caught up, I don't have much news to share back, other than this collage/painting I made on Friday:


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Close up of the painted bitClose up of the painted bit

It is going to be published in a book to celebrate the life and work of Jack Kirby (legendary Marvel comic artist who would have been 102 this week), with all proceeds going to the Jack Kirby Museum.  I'm proud to take part.

 

And Facebook memories being serendipitous this morning....  I was having a little sulk about how I wish my hair would grow quicker as I'm properly not feeling my current skin'ed look....  and this popped up from 3 years ago today:

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It is the first time I managed to squeeze my hair into tiny pigtails after a previous disastrously short haircut

 

So I thought, I wonder how quick it grew after that so I went though my pics and found this one from exactly a year later (2 years ago today):FB_IMG_1567322608041-picsay.jpg

 

And I'm really reassured to see how much it grew by in a year.

 

And that's with it being in bad condition too from all the bleaching, with split ends etc...

 

So that has really given me some hope that a year from now, maybe I'll be able to have little teeny tiny pigtails again 🙂  and a year after that, back to shoulder length.  Fingers crossed!

 

Hopefully it reassures my fellow GI Janes too, as I know we are all very keen to get back to slightly more flattering hairstyles 🙂

 

Take care all, love to all I've mentioned and to those we haven't seen for a while

 

Sarah x









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Re: February starters 2019 - yes, we rule!

Hi daisydi 

 

Your rain dance worked just fine here in Somerset yesterday🌧🌧🌨🌨🌨. The sun is shining here today🌞🌞🌞🌞 though. Thank you for you kind and thoughtful words yesterday.

Susie xxxx 

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Re: February starters 2019 - yes, we rule!

Morning, well my rain dance didnt work.  Still sunny.  Have a good day all x

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Re: February starters 2019 - yes, we rule!

Tech support here, just popping in to post some right way up photos of Edinbird's Lego creation 🙂

 

Will be back later to catch up properly

 

Sarah

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Re: February starters 2019 - yes, we rule!

Hi all xx

 

Have been occupying myself with some more Lego Star Wars, I’ll make the schnauzer another time but I said I was disappointed I didn’t get any for my birthday so husband ordered it! Really sore shoulder now having been hunched over all afternoon. The ship is cool it even fires the weapons! Just hope I don’t knock it over and break it.

 

I tried to post photos but they all came out upside down!!

 

Wolvesgirl that must be your first or second cycle then? Please don’t give up, we have so few options for TNBC and it won’t always be this bad. I was in hospital twice during my chemo and got looked after really well, to get through all your chemo without getting an infection or a delay is so uncommon. If you feel up to it there are a couple of TNBC forums on Facebook where you can ask anything, there are people at all stages of treatment and people who have been clear years. I find that this forum is best as it’s a small group of people and we have gotten so close but the Facebook ones are more specialist to what we face, it can get a bit much sometimes and you have to learn to switch off a bit. I’ll go on the other thread and have a look and see if there’s anything else I can suggest to help. Have you have surgery first? I had chemo first as it was in my nodes and I’m about to move onto rads but I’m also getting oral chemo as I didn’t have a complete pathological response. You need to take everything you get offered against TNBC and doses can be adjusted and meds given to help you through. I had FEC-T and Susie is having a different combo as she’s on a trial. Just let us know if we can help. Lots of love 💕 

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Re: February starters 2019 - yes, we rule!

Glad you like the photo Rosina.  It is Horsey Mill just down the road from me and the beautiful Norfolk Broads.  It is a National Trust Site and the sails have only recently been fitted.

Susie my wound is healing but very slowly.  It is still very sore and is very difficult driving when I have to turn to look into my blind spot.  I certainly wouldnt be able to drive long distances at the moment.  My nipple is sort of healing too.  They were to two areas I was sore almost straight away and very common apparently.  I couldnt have done any more creaming and gelling than I did.  Its just one of those areas where creases are formed when your arms go up and the radiation bounces around.  I do think my gelling with Aloe Vera straight after treatment did help though and I dread to think what state I would be in if I hadn't done that. One of the radiographers said I had obviously been looking after my skin as I think they expected a lot worse.   Regarding reading about cancer I am not doing any of that now.  As far as I am concerned I have had all the treatment available and am taking the hormone tablets so I cant do any more.  No point in dwelling on the what ifs. I have done plenty of that and there is nothing else I can do.  Dont want to be worrying and miserable for the rest of my life.  I know with TNBC its a bit different but you have done so well and are also doing all you can so try not to read stuff if it is making you unhappy.  Only one more chemo for you now.  You have been a real trooper.  It was interesting on the news last night about HRT.  Now they are saying that it does increase the risk of bc.  I didnt take that so cant blame it on that one.

Have a good evening everyone x  By the way its still hot here and sunny, no rain.  I will do a rain dance in the garden later.

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Re: February starters 2019 - yes, we rule!

Stunning photo Daisydi 🤗

Yes, it has made my day. 

I have just had another 2 hour nap. Walked to town, made a veggie soup ( my concoction as I didn’t realise that I needed 400g of carrots - I had 200g so I replaced with baby new potatoes and celery- still turned out good.

Having a coffee now and getting into gear to go and wish my lovely neighbor a Happy 50th . She has a marquee, live music and has invited all of the neighbours.

Can’t be that hard to get up and make an effort to get dressed 🤪 a shame that the weather has gone dark and cold.

Its looking like October out there !!!

 I will have to chuck a shawl on .

God , I am NOT full of beans at the mo. The weather is making want to stay in and watch tv.

Eeeeek , it is raining now 😲😳

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Re: February starters 2019 - yes, we rule!

Hi everyone 

 

So where's the sun gone🌤🌥🌫🌦🌧🌫? And our very old tumble dryer had decided to pack up☹. Luckily we've got a Sparkworld in the road next to us so hubby has already bought a replacement☺.

Well I've definitely rejoined the sleep deprivation society😪😪😪😪😴😴😴. Bloomin high dose steroids💊💊💊💊. Even taking 2nd dose at lunch times didn't help. Hopefully tomorrow night I'll get back to normal routine🤞🤞🤞

Onto my recent book purchases. I had to stop reading the book by Edwina Thompson, A Warrior's Words. Won't go into details but I think some of it was adding to my recent low mood. Patricia Prijatel's book Surviving Triple Negative BC is a very informative book not only covering her own treatment, but trials, diet, excercise, treatments. You just have to bear in mind that she is American and the book was written in 2013/14. She does give details of some reputable American cancer research sites so you can see how their research is going. Her book seems to be very positive. Hope I'm making sense as chemo brain well and truly active😨😨😲😲.

I've just been in contact with Wolvesgirl in the Aug 19 group. She's TNBC the same as me and Edinbird and currently in hospital with a viral infection and low neutrophils and suggested she pop into our group or perhaps some of you could talk to her about your experiences. I think she feels she may have to stop chemo so a bit of reassurance may help. 

Beautiful photo daisydi☺. Hopefully your sore neck wound is healing. Wondering if I'll have a similar reaction as my rads will also include the clavical area.

Deano, have you started radiotherapy? Sorry I've lost the plot a little.

Ocean21, I hope you're ok. I did get a ❤ from you the other day so I'm assuming you are.

Hope you are all keeping well. Enjoy the weekend.  xxxxxx

 

 

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Re: February starters 2019 - yes, we rule!

Another beautiful photograph taken by a local photographer to brighten up your day xAnother beautiful photograph taken by a local photographer to brighten up your day x

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Re: February starters 2019 - yes, we rule!

Hi Edinbird 

 

I took evening primrose oil and vit b6 to help with PMT, which defintiey worked. Sometimes I would stop to double check they were helping, which they did. I had very few menopausal symptoms and am wondering  now after seeing daisydi's comments if that's the reason. I've never linked them together. I didn't have any hot flushes so it may help you. It may take up to 3 months for you to notice a difference. As for your boss I think I would have politely and succinctly reminded him/her that if he/she wanted to discuss work related issues then that is precisely where the conversation should take place - in work!!!!!. Deffinitely get a referral  back to occ health. 

Keep going with the arm excercises as the pain will gradually subside and go away altogether, promise.. What do they say, no gain without pain. Wine with dinner sounds fine to me🍷🍷🍷☺. xxx

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Re: February starters 2019 - yes, we rule!

Hi Edinbird, yes it is a lot of money but they also have lots of treats, boat trips and lunches at the pub etc. but my mum doesnt get any of that now.  Marlyn they have about 15/16 residents so it is small but that is why we liked it.  They also get day visitors as my mum used to be but they are not all dementia patients, some are just elderly and need caring for.  No there isnt a room available downstairs at the moment but every single one of those rooms has become available over the last few years and every time we are sidelined in that they have a waiting list and have people whose needs are more urgent.  We accepted it eventually and havent bothered them for a while but now the situation has changed and she is confined to her upstairs room we are really going to push for it this time.  The carers say they are always popping in and out but they are so busy that I really dont believe them.  Another big issue for us is that the room is too small for two hospital beds, hoist, furniture etc. and there is nowhere for us to sit when we visit unless it is on the bed so it is really not nice for us or acceptable that we have to sit on beds.  Last week I bought her a lovely recliner chair as they were leaving her on one of those wooden framed chairs when she was out of bed and she was so uncomfortable sitting on it hours at a time.  Dont know what would happen if the other lady in the room was ill and stayed in bed and her relatives wanted to visit.  It really is ridiculous.

Edinbird I took 1000mg of Evening Primrose Oil for years for PMT and painful breasts at the time of the month.  It did work and I really didnt notice when I went through my menopause other than periods stopped.  I was taking it up until my diagnosis but then I had to stop.

God I am so itchy I think I will have to start taking the antihistamines again.  It never ends ....

 

PS Edinbird think I would have to have punched your boss in the face!  Bloody cheek 

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Re: February starters 2019 - yes, we rule!

One more to go SusieB 🤗

I cannot believe it’s 2 months since my last dose . Yeahhhh! Definitely feeling much better and the eyebrows are coming back with a vengeance. Just wish the eyelashes do the same too or I will be joining the 7 dwarves (  I could come in useful as an extra for panto this Xmas.).

Daisydi , how upsetting for you to have your mum in this situation. I do hope a solution is arrived at quickly.

Edinbird, I don’t think I drove for at least 2 months post surgery. I am glad that I took care of myself , as now when I drive there are no niggles whatsoever ( in the early days when I did get back to driving I took it slow- it 

was around mid April before I went on longer distances out of town - looked at my calendar to check this).

Also the hot flushes are actually a good thing. I read somewhere that women that experience  hot flushes have a much lower risk of bc recurring . They also came in handy in that tent on the moor 😂

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Re: February starters 2019 - yes, we rule!

Thanks Susie - I don’t think we own hankies but I can invest! I have small boobs however the amount of sweat is disproportionate! I have just been and cleared out Boots, now the oncologist has given me the okay for the Evening Primrose oil I have gotten brave (ish) and also got sage tablets. Plus Magnesium body spray as magnesium lotion was recommended for sleep by someone I know, and it was three for two on vitamins and supplements so I got a cooling spray. It’s blooming expensive being menopausal!! The cooling spray was £15 the tablets £13.50 and the other spray £13. Good job for the offer!! I asked about Aveeno but they don’t do the pot that Sarah had. I’ll ask at my appointment if I get given anything for it or if I should get something myself. I assume Susie that there will be tattoos but I genuinely have no idea.

 

Won’t go into the details as I’ll get angry again but I also had a very frustrating conversation with my boss in the middle of a shop about return to work and how they think I can drive to Glasgow and back already!!! I was so annoyed I didn’t even think to say that my shoulder is sore and I haven’t driven anywhere yet! I was just incredulous that it was even being suggested! I’ve told him I don’t expect to be able to drive there for about 2 months. I know I said I’d try and make it so my days to do bloods and get my chemo tablets are Edinburgh days but I’m so minded to just see what they give me and if it’s different days tough luck. I don’t think it’s all his fault as this situation is new for him but I hate having to fight for everything! I’ve asked to be referred back to occ health as they were the only people who seemed to understand my situation. Don’t know how long that will take to go through I’ll probably be on rads by then and there will be no argument about where I’m working for that.

 

Anyway, time to calm down. I don’t feel any more or less tired than yesterday but I didn’t take any tablets last night, sleeping or painkiller. My shoulder is more sore now as I’m doing more stretches so I think I will need painkillers but the oncologist said to lay off the codeine as it makes me groggy. There is wine with dinner so I might be ok! 😂

 

Daisy big hugs xx my Nanny was in a home for years as she had Parkinson’s and it’s so much money to be paying for care that you’re not happy with. And it shouldn’t come down to that she’s a human being!! I hope someone gets on your side with some weight behind them. There must be some sort of regulator for care homes is there someone you can speak to like that?

 

Lots of love to everyone else have a wonderful weekend xx

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Re: February starters 2019 - yes, we rule!

Daisy,

im presuming there isn't a room vacant downstairs? If there is a room already unoccupied it's unacceptable that the home won't consider your mum for it. How big is the home? Mine is considered small, I only have 11 residents...

Its sad her gp has written your mum off, gps are vital in this sort of situation, might be worth having a heart to heart with them? You need some "big guns" on your side, her social worker should definitely be involved in your mums well being. So she's in a shared room? How often do the carers come in? 

 

The anastrozole is so far being kind.....like you....I'm having the aches and pains but can pin it on the meds......xxxx

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Re: February starters 2019 - yes, we rule!

I need a couple of blokes hankies! Also a couple of blokes would make a nice change!

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Re: February starters 2019 - yes, we rule!

Hi everyone 

 

Currently in the unit having chemo. Final one due in three weeks🙂.

 

Daisydi, I'm so sorry to hear about your Mum's situation. I learned quite a lot about what happens in care homes from my Mother-in-law as she was in charge of a home for many years and continued to work week-ends until she turned 75. I can only concur with what's been suggested so far. If anything springs to mind I'll let you know. In the meantime don't forget to look after yourself.

 

Edinbird, hubby came home yesterday with a couple of tips regarding radiotherapy. One of the girls at work had radd in January this year and had a problem with sweating around the boob where she was zapped so she had a couple of blokes hankies to help keep the area dry and reduce the chances of the area becoming sore. She did have another tip but that will only be of help if the radiologist is using marker pen rather than tattoos. Let me know after you've had your meeting. Hope you're feeling in better place than you were a while ago. 

 

Forgotten who else  I was going to reply to. Chemo brain strikes again🥺🥺. Haven't worked out split screen on my new phone yet. Will be back later. xx

 

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Re: February starters 2019 - yes, we rule!

Hi Maryln it is a small privately run home and very homely but for whatever reason (I think financial) they will not give my mum her own room downstairs.  When she first moved there she was a wanderer and had started to wander out at night so we had a meeting and social services said she needed to stay there.  There was only a shared room available and I was so upset and adamant that although I appreciated she needed to be safe I wanted her to have her own room when one became available.  5 years down the line and we are still battling even though after falling down the stairs the paramedic report said that she should have a room downstairs.  She does have a social worker but whenever the issue is raised we are told by the manager that they do not see any benefit to her to have her own room.   The GP visits the home every week but I think has written her off as the home as.  All through my treatment I have continued visiting and now we are going every day as we are concerned.  When we go into her room there is nowhere for us to sit other than on the bed and we cant get near enough to her unless standing and talking into her ear.  I know that hoisting is upsetting for the patient and that she has to be hoisted onto the stair lift and it is not particularly safe but I also feel that we are entitled to spend quality time with our mum in comfortable surroundings with somewhere to sit.  It is so stressful and I could really do without all this additional stress on top of everything else going on.  The battle continues ....

As for Anastrazole Im not really sure about side effects.  Definitely getting hot flushes and itchy skin but then I had that anyway.  Also some arm and leg ache but not really too bad and that may be caused by something else, ie. chemo as I have been told it will take at least 18 months to get chemo out of system.  Apparently the oncologist will review in 3 months and I think any side effects would have settled down by then.  What about you?

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Re: February starters 2019 - yes, we rule!

Daisy, my heart goes out to you with your mum. Is she in a private home? You've spoken to her gp haven't you, they can write a letter ref her benefiting being downstairs....although not certain how much weight this carries in a private home....the thought of her being stuck in her room is unbearable, but the thought of the upheaval of moving to a completely different place is unthinkable. Stick your ground when to meet the manager, the situation is difficult for you all....does your mum have a social worker? Sorry for all the questions! X

 

ps....hope the anastrozole is still going ok? Xxx

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Re: February starters 2019 - yes, we rule!

Morning, lovely to be able to talk to you all again.  Thanks Rosina, yes I am on the Vit C route still taking my shake which has lots of Vit C in it and strawberries and blackcurrants at the moment.  I think the unit were surprised at how my skin was holding up as it is apparently usual for large breasted ladies to have problems but apart from rashes and itchiness it hasnt been that bad.  Its just the bit by my collar bone which was always sore.  It is gradually healing from the bottom and as soon as another bits heals I am putting the aloe vera gel on and aveeno round the edge to ease the tightness.  Its just red raw like a really bad burn but the weeping areas are getting smaller every day.  I was told not to put anything on it Sonia and just let the skin heal naturally. I will get there just as usual just impatient to get over this last hurdle as I am desperate to get in the sea before winter comes.  Hopefully next week when all the hoards have gone home. I'm just about to pick up my second batch of Anastrazole.  Not sure if getting side effects as I already have so many but definitely getting hot flushes but then that may be the heat.

As for my mum because she fell and cut her head open a few weeks ago the home seem to have got scared and are either leaving her in bed or in her room alone all day.  It is a very hot room and every day we go in we complain.   They are hoisting her for every movement although she could stand with assistance before she fell.  We went to look at another home the other day but it was a dementia unit and Im not sure it would be good for my mum but it is all on one level which is the problem with where she is as she has an upstairs room and they dont like putting her on the stair lift to get her down.  We have been begging for a downstairs room since she fell and broke her hip a couple of years ago, then fell down the stairs but they wont budge for some reason and say that because my mum doesnt really engage with the other residents now then she does not benefit from being with them.  We totally disagree as now she seems to have lost her sight she can hear and yesterday she was totally lucid and was speaking and answering questions like normal.  They seem to have given up on her but as we keep saying she deserves more than spending the rest of her life in a small hot isolated room.  We are meeting with the manager next week and it may be that we have to move her but she has been there for nearly 5 years and I would prefer not to.

When I couldnt get on here I was so worrying about how you were all doing and I am so glad that some of you have managed to have lovely holidays and breaks and that you are all looking so well.  Someone said to me yesterday that I look very fit and healthy and that it must be the Norfolk air!  Its been so hot here and I am right by the sea so I dread to think what it was like inland.

Susie when is your chemo, is it today? If so good luck.

Love to all xx

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Re: February starters 2019 - yes, we rule!

Morning Ladies,

just to let you know that this is a very special group for me.

Trixielady, good to hear from you. Enjoy your holiday. Are you able to go for a swim?

Nettinnoo have a lovely time with your grandsons and Murphy the cat ( that is a great name for a cat !)

Daisydi, I am still applying the R1/R2 system to my skin (still have plenty of sachets left even though radiotherapy has finished) it has gone reddish/pink in the collarbone area and I have had little red spots which scabbed over in this region too. 

No bleeding of skin though and the rest of the boob is fine.

Can I suggest you eat plenty of citrus fruit as vitamin C is great for skin health. I do hope that your mum is okay, that is an extra worry for you - I got on the phone to my mum this morning as she lives by herself in Athens. 

Implausible , this Tamoxifen is supposed to cause depression as a side-effect but I am feeling fine.

On the Hike weekend the average age was late 2Os to early 3Os, we had to walk in silence and only chat at meal times ( I knew this before signing up) .

I felt like the naughty kid that wanted to chat all the time to begin with. I then got into the routine of keeping quiet. I made up for it on the train journey back though, chatting to the lovely Rosie ( yes , that was her name) for a good hour in what was the ‘quiet carriage’ as we came up with solutions for GWR overcrowded train.

Ocean21 where are you?

Got my yoga planning done yesterday and I am excited about doing yoga with my class 🤗

I am back at work on Monday (INSET) and I will sort out my phased return .

Sonia28 you are looking very well in your photo. What is the secret ?

SusieB , hope you are feeling better today.

MBJ and Seasidesar, greetings to you too 🌼