Breast Cancer Care Forum

Hi all - Sarah again from the Feb 2019 group Sorry to hear you had a short stay in the hospital Artycart - if it is any reassurance (a bit late now I know!), i also had a bit of a racing heartbeat the first few days of every cycle, the nurses told me it was because of the steroids and not to panic too much. I also listened to a ton of podcasts at night, especially during my T cycles, as I was kept awake by achy legs.   Best of luck with your scan and wig fitting tomorrow. Hope everyone else is getting on OK.   One piece of advice I forgot last time, it is worth keeping a note of how you feel each day during cycle 1 as you'll find that subsequent cycles follow a similar pattern.  So, in my case, I felt pretty rough from day 5 through day 9, but knew that from day 10 I'd start to feel better.  And in week 3 of FEC I was pretty much back to normal.  It was good to know what was going to happen when so I could plan around it. ... View more

Sounds like we have a lot in common Artycart  🙂   I used to make a ton of jewellery, still have all the kit and would like to get back into it one day.  I mainly did chain maille, and other stuff with silver or copper wire.  I got really into etching and metal stamping at one point.     (I uploaded these pics on my phone, apologies if they look huge on a computer screen!)   But nowadays mainly I paint (mostly acrylics with a lot of mixed media/collage stuff going on, and sometimes some embroidery in the mix)   I also make little books and comics             Sorry for taking this thread rather off topic!!   All the very best to those of you still to have chemo #1, and I hope that those who have already taken that plunge aren't feeling too rough from it.   Sarah x ... View more

Artycart - fellow dabbler in the arts here, *waves*    One of the things I was really worried about before all this started was if my right hand wouldn't be so dextrous if I got lymphdoema, as I paint a lot of quite small, detailed things, and would be lost without it   Touch wood, so far, no problems.  Make sure you do all the arm exercises they give you after surgery.   What kind of art do you do?   Oh and if you have the option of a PICC line or portacath (I had the latter) rather than cannulas for the chemo, go for it, saves them having to fight for a vein each time      ... View more

Edinbird, I've never seen that photo of you with the cold cap on before, it's ace 😄   Hi Daisy D   I did exactly the same, got my long hair cut off a few days before starting chemo. They said it would make the cold cap work better (closer contact with the skin and follicles I guess?), and also I figured if it was going to fall out, I'd be less upset seeing short hairs fall than big clumps of long hair.   As it turned out I didn't much like the short hair cut, and so when I did give up on the cold cap and go bald, it wasn't that traumatic, as really I felt like I had already said goodbye to my hair when I had the preemptive haircut.   As for lumpectomy vs mastectomy, there are lots of factors in that decision. But one is down to the size of the lump and how big your boobies are. If it is a big lump and your boobs are not super big, they don't always have enough left to work with.... the position of the tumour matters too.   Because mine was biggish at 3cm my surgeon said she would have struggled if I had smaller boobs (I was a DD cup before the surgery, now I'm a C).   She still wasn't sure even going into surgery if she could successfully do a lumpectomy so i had to sign a thing saying if she couldn't I was happy for her to proceed to mastectomy straight away without waking me up to check and rescheduling for another time.   So the very first thing I did when I came round from the general anaesthetic was peek under my gown to see whether or not I still had a boob!!   In your case, given you don't yet know how much it will have shrunk by by the time you have finished chemo, I don't think it would be unreasonable of you to ask them to reassess after chemo is done to see if a lumpectomy could be an option.... or at least explain better why it isn't....   Sarah ... View more

Hi to all the Feb 2020 ladies   I'm from the Feb 2019 group - and in fact today is the anniversary of my first chemo dose last year I thought this would be an appropriate moment for me to pop on, wish you all well, tell you a little about how the last year has gone for me, and hopefully offer you all some reassurance about the months ahead   Reading through your posts so far I can see that you are exactly where we all were last year, worried sick, desperate for information, wondering if we would lose our hair or not 🙂 The last one feels trivial, in a way, but it SO isn't, it was all I thought about! 🙂   A quick summary of my circumstances, in case there are any of you similar, if so, if you have any questions at all, please do fire away.  And I'll pop back in here once in a while in case I can help with anything.   I was diagnosed a week before Christmas 2018, having found the (pretty big, 3cm) lump myself. I had recently lost nearly 5 stone in weight and the docs reckon it had been there for well over a year (I was 52 but hadn't yet been called for a mammogram), but my previously big fat boobs had hidden it 😕   I had a lumpectomy mid Jan, and then started chemo mid Feb - 3 x FEC then 3 x T, 3 week cycles.   I was nervous as hell, but it wasn't TOO bad - never had any nausea or throwing up, which was what I was dreading the most. The main side effects were fatigue, photosensitivity (I sometimes had to wear sunglasses to go out for a walk as the light really bothered me, but that was only with FEC and only for a couple of days per cycle), and the fact that all food except cheddar cheese tasted disgusting 🙂 I pretty much lived on cheese toasties for the whole 4.5 months (and consequently put back 3 and a half stone of the weight I'd only just lost!! - but I'm happy to report that I have since lost it all again)   All in all, in my experience it was more of a dragged out permanent feeling-pretty-rubbish-and-knackered thing than anything totally game changing, side effect wise. It does get you down though.   I went back to work from the 2nd cycle onwards, as I only got 8 weeks sick leave, and had used all that up with my surgery and first chemo cycle. So that added to the fatigue, but also gave me something to do and stopped me wallowing, so I don't think it was entirely a bad thing. Hopefully you have all got better sick provision at your jobs though! I did work from home in the middle week of each cycle though because that's the week when your immunity is most compromised, and I didn't want to catch any office lurgies.   I cold capped - but unfortunately for me it didn't really work, my hair thinned out to almost nothing and looked blinking awful, so at cycle 3 I decided to ditch the cap and shave my head. You know what? I didn't entirely hate it!!! 🙂     I didn't bother with a wig, instead I bought a fake fringe with velcro on it, and stuck inside a little peaked cap, it looked really realistic, and it was much more comfortable/less hot and itchy than a wig. (I coloured it in myself with sharpie pens to match the colours I used to dye my hair, everyone thought it was real! You can obviously get them in more standard colours too 🙂 )     This is what I looked like by the end, no eyelashes, hardly any brows, weird bum fluff starting to grow back on top. Not a pretty sight! But as Deano reassured you a week or so back, you honestly don't look a state like this for long, I promise 🙂 My lashes grew back really quick, brows still aren't as dark and full as they were before, but they are getting there. and hair grows back at a rate of knots!   last chemo day! I'm SO fat 🙂   Here's me a few weeks ago - so about 7 and a half months after finishing chemo.   7.5 months after chemo: lashes, check, brows, check, hair, check 🙂 about 4 months after chemo And this much shorter haired pic is from mid October (when I took myself off to New York for a week on my own to celebrate getting through it all 🙂 ) . So it has grown loads in just over 3 months.   I'm specifically sharing hair pics as I used to spend HOURS during chemo googling hair regrowth photos to see how quickly mine would grow back, and I'm sure it's on your minds too. Or am I the only horribly vain one?? 😄   I walked every day during chemo - as our Daisy Di (not to be confused with new Daisy D!) said, it really does help. Keep as active as you can. Don't eat as many cheese sandwiches as I did. Keep positive, keep smiling, keep taking your temperature, avoid germy people, and you'll be through this in no time!   As for recovery after chemo - it (and the radiotherapy after) did leave me feeling weak as a KITTEN, which was annoying as I had been a bit of a gym bunny before. Well I am now on a crusade to build my strength back up - and since last November (I had to wait until after my last bit of surgery in October 2019), I've been back at the gym on a real mission 🙂 I have lost all the weight I put on during chemo, with interest. And I feel really fit and strong.   I do weight training 3 times a week, and also aqua aerobics, swimming and zumba, and lots of walking. I've even signed up for 2 10k runs this year! (although I'll probably walk most of it both times 🙂 )   So when you get to the point that you feel utterly drained, and wonder if you will ever again have the energy to walk up a small hill, or stay up past 6pm, please be reassured, a year from now you could be feeling as good as, if not better than, you felt before all this started.   Sorry this was a long read, but I was always really inspired by the stories of people from the Feb 2018 thread (a year ahead of me) when I saw them signing up for the Race For Life and similar, and sharing pics of their hair growing back (again with the hair!) and stuff, so I wanted to give you ladies a similar little boost, if possible.   Lots of love and support, Sarah x ... View more

Hi Jencat - Sarah from Feb 2019 group here. I'm so sorry to read your news, I haven't been here on the forum for a while, and last year feels so long ago, but I remember you well as you were always popping into our group and being super helpful. You must be devastated right now as any of us would be (and sadly some more of us probably will be) at the prospect of going through it all again.  But I have at least one hopefully encouraging anecdote. A friend of mine had her first bout of breast cancer (as she puts it) over 20 years ago.  It came back 3 years later in the same breast at which point she had that one removed.  It came back again 5 years later on the other side, when she had the other Mx and a third round of chemo.  She has now been 15 years clear, is tremendously active (one of the fittest 55 year olds you will ever meet) and all is good.  She even grew to love her chemo curls (which never went away) as she now has lovely long wavy hair.   So glad they have caught your new one super early.  But so sorry you have to go through the whole rigmarole again  Sarah x   ... View more

took me a few attempts to remember my password! I was going to write a long essay with photos etc of how the last year has gone and how I'm getting on now for the Feb 2020 starters, as I know how encouraging I found it while I was in mid chemo, to look at the ladies who were ahead of us and see how well they were recovering 6 or 12 months down the line. I will still do that when I get the time, but in the meantime, hi to everyone old and new. ... View more

Nettie I once broke my little toe when I stubbed it hard on the corner of a bookshelf (when I was stomping in a bad mood 🙂 )   I did go to hospital, had it x rayed and confirmed as broken, but you are quite right they didn't actually do anything.  Don't think you can put your toe in plaster or in a sling 🙂   They just told me not to drive for 2 weeks as the pain might put me off braking , and then just wait for it to get better.   It eventually did.   ... View more

That's brilliant news Sonia!   Enjoy the awards 🙂 ... View more

Hello lovely ladies   As ever, apologies for my absence, I've been so busy I could drop.  And I'm not going to get any less busy any time soon for reasons I'll get into once I've caught up with everyone.   Eek, last time I posted properly was last Friday, this could take a while!   Daisydi, the cost of care homes really is so high.  I don't begrudge the people doing the care work from making a living so I'm not saying they should reduce their rates, but it definitely feels like something that should be subsidised by the NHS.     If your mum didn't have such a good pension it would be bankrupting you and your sister, it doesn't seem right 😞       And now you have to pay 2 of them at once for a few weeks, to add insult to injury!  Hopefully it will all feel worth it when your mum is settled at the new place.   Oooh Nettie, a 19 year old toyboy when you were 24, go you! 🙂   I've always only been out with blokes younger than me.  Well apart from my very first boyfriend who was 2 years older.  I figured they kept me young 🙂   Hope you are looking forward to Amsterdam.  I haven't been there for yonks.  Might have to put that right next year.   Edinbird, I'm whispering this in case any of my boys see it, but I've never been remotely maternal either!  My 3 kids have 2 different dads (first 2 with ex husband , youngest was a result of my I'll advised post divorce rebound relationship), and in both cases it was the bloke who was the one pushing to have kids.  Left up to me I definitely don't think I would have gone that route.  And I certainly don't think everyone has to have kids, I quietly envy those that have chosen not to!   All that said of course I love my boys to bits and certainly wouldn't undo them.  And having had to bring them up mainly on my own, I don't think I did a bad job at the mothering in the end.  But I do sometimes wonder what my life would have looked like if, like my sister, I hadn't gone the mum route.   And Marlyn, you're right, childbirth isn't fun!!  🙂   As for all of you lot and your reincarnation stories, that was a fun read but I sadly can't join in.  I've never really had any spooky experiences or flashbacks to past lives, or anything like that.  I don't think I'm particularly in tune with the spirits 🙂   other than a very occasional vodka and orange!   Sonia, I really hope the docs can find something that works soon for your hands, especially as you are looking to get back to work.  Will you be resuming your studies too?   Marlyn that really is interesting about your sister's vision of the future!  Again, I have no anecdotes to add.  I'm very boring in that respect.   Rosina I can thoroughly recommend dropping to a 4 day week.  It made all the difference to me and I can't imagine going back.   Seaside I hope your sleeping patterns are improving.  Nothing worse than sleep deprivation.  Did you enjoy what you did see of the Lion King?  It made me cry!   Daisydi those were amazing photos you took of the sunset and the harvest moon!  Thanks for sharing   Trixielady good luck with your symmetrisation (I've probably spelt that wrong!) surgery next week.  I have mine on October 21st.  I'm really looking forward to not being lopsided any more 🙂   Susie and anyone else who is going to be in London.  Let me know when you might have a gap in your schedule to meet up for a coffee and a hug and I'll see if I can get there.    Marlyn you do make me laugh with your auto erotic neck waxing 😄   I also have down bumfluff on my face and neck since chemo.  I'm kind of hoping it might bugger off on its own.  It isn't that noticeable unless you really look for it so I'm ignoring it for now.   Susie your garden looks glorious   Edinbird that curry sounded like a disaster!  Good on you for writing a review and complaining.    Nettie no underarm hair here either.  And I still don't need to use deodorant, I don't sweat under my arms at all any more.  Weird.  But everywhere else the hair has come back now.  Weirdly my down-below thick and curlies are no longer curly, they have come back straight.  Odd.    Susie you can tell your hubby that his theory was right!!! Eyebrows and lashes are pretty much back to how they were before.   Edinbird does your doc definitely think you are in full menopause then?  I know chemo can accelerate it but you are so young 😞   Hopefully the associated symptoms will clear up soon   Oooh Susie another spooky story, there are so many recorded stories of near death experiences, there has to be something in it.  I always wondered if it is a hallucination caused by the brain starving of oxygen right near the end.  Thank goodness your other half survived!  Did the girl he was trying to save make it too?   Sonia I'm glad your second Zoladex injection went better than the first and you didn't stagger out of the medical facility looking like you had been shot in the stomach!  I had my first one on Monday.  It was fine (although it stung a bit going in!).   Don't blame you trying to avoid the wrist ops given the long and inconvenient recovery period.  I really hope that the cortisone injections help.  Did you have arthritis in the wrists before all this breast cancer stuff?  Or has it all come on post diagnosis?   Rosina I dare you to do the dying fly on the classroom floor just to shut them all up 🙂 🙂 🙂   Susie hope you had a lovely anniversary meal Daisydi I'm glad you enjoyed your holistic pampering, sounds like it was really beneficial.  I surprised myself how much I enjoyed/felt better after the reflexology sessions I had after my rads.  I've never much believed in anything like that, but I have to admit it definitely seemed to help.   Really glad to hear that the new care home is holding the room for your mum despite the old home playing sully buggers.   Susie the end is firmly in sight for your chemo now.  That seems to have gone quick but I bet it hasn't felt quick for you!  You'll be so glad to see the back of the picc line I'm sure!   Rosina you've put me to shame exercise wise this week.  I've not done as much as usual as I've been super busy.  I did have a swim on Monday but that's it.  Hoping to get to aqua aerobics tomorrow after work if I can get away in time.   Sonia glad you got to pop into work and see everyone.  Hopefully you'll be feeling better and back there soon for a bit of normality.    Wondering how our MBJ is getting on.    And also love to those who haven't popped on recently, hope life is going well.   As for me....  well....  it has been a busy week.   First of all, I have a new job!  Well, a new voluntary post anyway, no money will be changing hands.  I now do a 4 hour shift on Fridays in a local charity shop that supports the women's refuge.  I volunteered entirely on impulse and am now wondering why I did it when I reduced my paid hours at work to give me more "me" time and now instead I'm spending the time I freed up doing more tiring work unpaid!  Daft of me really 😄   But I'm excited about being able to do something to help a cause close to my heart.  So it's all good.   And at my real job, my wonderful second in command, who has been an absolute star all the time I was off, and really kept the ship afloat single handedly, handed in her notice this week 😞   This means I'm going to be waaaay more busy for a while, because even if I manage to replace her quickly, the new person will need training up.  And nobody will be as good as Georgina was.  She was in 5 days to my 3, but she did more than 5/8ths of the work.   I'm really going to have to step up!   Drugs wise I've now been on anastrazole for 6 days, and so far so good.  I keep waiting for the side effects to kick in and I'm pretty sure I'm not out of the woods yet.  But at least I haven't been instantly hit with something debilitating.    If anything, the one effect I can observe, it seems to have improved my sleep.  My fitbit gives me a "sleep quality" score every night.  Mine was always in the mid to high 70s, never went over 80.  For the 5 nights since I started taking the tablets I have had sleep scores in the low to mid 80s.  Might be a coincidence.  I'll keep watching it....   I also had my first zoladex implant on Monday (ouch).  So far so good with that one too, although it's very early days.   I shall be mightily pissed off if all the bad side effects land on me in 2 weeks time just as I'm about to get on the plane to New York!!!   Vanity wise I'm particularly worried about the threats of weight gain and hair thinning/ loss, which both anastrazole and zoladex state as side effects....   My hair is coming back nice and thick so far and I want to keep it that way!   And as for weight gain, I don't want that while I'm on a bit of a roll losing the weight I put on during chemo: (24lb lost since July)   I'll just have to step my exercise back up, inspired by Rosina!   The other thing that is taking up a ton of my time is the astronaut book I'm trying to get finished before I go to New York (as I want to hand deliver it to it's new home in Brooklyn).  Work in progress:   Also I decided that I'm going to risk bleaching my barnet so I can put some colour on it.  Not going to do it myself though, letting the hairdresser do it the first time, have already been in for a skin patch and strand test, all good so far.   I'm going to get them to clipper it short at the back and sides and then bleach the top bit.  Eventually I'm hoping it will grow into something along these lines (ignore the tram lines and the star, I'm not getting those 🙂 )   Oh and while I was in town I got my nails done did:   And promptly ruined them by getting black spray paint all over them 😄 Ooops! I think that's all my news?   Oh - one more thing - remember that comic story I was working on for ages about Peggy the prostitute?  The book that is in came out last week and this week lots of reviews have come in and they have all been super complimentary about my work and that has been rather lovely.    So - between working 2 jobs, doing lots of art, soaking up nice praise, occasionally exercising, meeting up with friends for nights out, planning my New York trip, taking ALL the meds, and trying to keep on top of the housework, I'm a little bushed!   Night night all!   Love to everyone Sarah x ... View more

Just jumping in to get post number 6666!  😄   Will actually reply properly in a bit 🙂 ... View more

PS Sonia I wore all black just in case!!!!  ... View more

Hi all, just the quickest of check ins.   I'm sat in the GP's waiting room with my Zoladex syringe, waiting for the nurse to get back from lunch so she can jab me   Depressingly that has given me enough time to read the side effects leaflet.  Kind of wishing I hadn't!   Susie.... my rads planning appt took forever but mine seems to have been different to everyone else's as I had a cannula (which took them over an hour to get in due to my rubbish veins) plus a CT scan in one building then a different scan in a different building then a long chat with the rads nurse.   Will post properly over the next couple of days.  Crazy busy at the mo   Love to all   Sarah x ... View more

I was pregnant and needed to get married quick before it showed!!  😄 ... View more

I'll reply later properly but happy anniversary everyone! (Including Susie's coming up)   Must be the time of year for it as it was my 30th wedding anniversary a couple of days ago too (I was married 9/9/89), not that I celebrate mine much 😄   As for London trips.  I'm in London a lot, often work down there midweek, plus I could hop on a train easily pretty much any monday or Friday, so if any of you are ever there and want to meet up for a coffee, just yell.   And Edinbird.... I'm amused:D ... View more

fantastic!  that's about the length/shape I want, I don't want claws 🙂    I might pop into one when I'm in town tomorrow, and get it done now if they accept walk ins, so I can see what it is like, and then get them done again in 3 weeks just before I jet off.... exciting times, I'm fed up of them being all raggedy and falling apart ... View more

Ta   Not sure how I'd tell the difference between a good one and a rubbish one.  I'll see if any of the far girlier-than-I ladies at work recommend a place....  ... View more

Ah cool.  I just wanted to know that it was possible before I walked into a nail place and they laughed me out of the shop 😄   Thanks ladies ... View more

But if they do a gel polish they can't add any length, can they?  Isn't that just like a normal polish but stronger/longer lasting? I don't want super long nails (talons as you called them 🙂 ) but I don't want 4 nails only halfway grown....  ... View more

Oh that new room sounds like it will be so much better for your mum, Daisy.  It really is such a worry isn't it.   My other half has been moving his nan from her previous retirement flat into a care home over the last couple of days.  She really can't be on her own any more.  It has all gone quite smoothly so fingers crossed so will yours.    One thing I forgot to mention earlier in my big post, and also a question.   The thing I forgot to mention was my nice surprise earlier with my travel insurance.  Obviously they knew about my health issues this year as I claimed from them earlier re missing my American trip in March.  But I thought I had better ring them just to see how things now work - I have an annual all countries policy, and I figured I would now need to either give them more money, or that they would cover everything other than breast cancer complications.   Anyway they asked me a few questions about my initial diagnosis and treatment to date, and then told me I am still fully covered at no extra cost.   I was rather chuffed with that!   So I can relax a bit about my trip to New York next month.   The question is about nails.  Do any of you know anything about nail salon places?  I've never set foot in one!   I've now lost 4 fingernails , but when they came off, they didn't leave naked fingertips, there were other nails underneath.  I presume it is these new nails that are forcing the old ones loose.  Very odd.   So anyway, now both my pointy fingers and both thumbs have super short nails like so:   (The one on the right).   I'd quite like nice nails for my New York trip.  Does anyone know if they could glue (or whatever they do) fake nails over the top of these, or do they need a full length nail to work with?   And how long do the fake nails last?   I am so ignorant about girly stuff 🙂   Sarah ... View more