Ok, I'm now panicking, just picked up my anastrozole from chemist and the two boxes are different makes! One is accord the other is crescent.....and the one I'm on now is teva....surely it can't make too much difference.....can it??????
Blimey implausible, you really have lost weight! What a difference....I'm well gel! Oh and I do love London so much, we lived in Wellington barracks on bird cage walk, I love the pic of the donkey wallopers....the blues and royals....where is your office?
Have a good day xxxxx
Morning you lovely lot
I'm on a train to big ol' London so I thought I'd make a start on a message to you all.
(Rosina your 8/8/8 schedule sounds delightful in theory, but I'm looking at being out of the house for about 14 hours today! Days in the London office are long ones. At least tomorrow I can't work late as I have hospital appts - wound check at 6pm from my little op a fortnight ago, and then onco appt at 6.30pm)
Sonia, I was indeed happy to be back at hockey
As for lymphedema exercises, as well as the specific ones mentioned, I've been told that swimming breast stroke is really good as it keeps the arms moving through a good range of movement. Also, there are reflexologists who specialise in lymphatic drainage. I had one work her magic on me after rads and I could see my wrist, which had been a little swollen, reduce in size as she worked. Quite remarkable.
You have lots of busy weekends coming up, me too, beginning to wonder if I have bitten off more than I can chew!
Daisydi, I hope that once everything has calmed down a little you might find a nice little part time job to suit you. Money worries are not fun. Also it keeps us social and brain engaged to have a little bit of work to do, I think. Must admit I am very glad to be down to a 3 day week now - one benefit of the cancer! I had been asking to go down to 3 days for a couple of years but they wouldn't let me. Said I was too indispensable! But I pointed out they managed fine without me for 8 weeks earlier this year so I couldn't be that vital
As for the rogue long lashes, yes I'd be tempted to trim them to match the rest. Get someone with steady hands and good eyesight to do it, though, you don't want to be waving scissors around too close to your eyes!!
MBJ glad to hear that your lymphedema exercise regime has paid off so well. And that you are now able to ditch the heart monitor. That must have been a pain in the butt to lug around all month. Hope the results are positive.
Ah here I am at Paddington. That was quick. I'll pick this up again in a bit.....
OK I'm now walking through Hyde Park on my way to work. It is quiet here today. Probably because it has been raining. Feel like it is my own private royal park
Hyde park selfie:
Blimey I have definitely lost weight since the day I finished chemo!:
I was such a potato!!!
Anyway, where was I?
Marlyn, I'm sorry you jinxed yourself with the sleeping thing here's hoping the good kip will return. The drunks outside can't have helped! I didn't have too great a kip last night either but that was mainly because I had to set my alarm a lot earlier than usual to catch the early train. Usually when I work in London they send me down later so they can buy me an off peak train ticket. But today I have an early client meeting...
My morning didn't involve an ice cold bed bath or doggy diarrhoea though, so I really can't complain!!!
As for all our sudden interest from ladies who, in your brilliant words, ride the other bus I feel sorry for them as they are all going to be sorely disappointed in us!
Ocean, great to hear from you. Glad you have had some lovely family time and that your rads are progressing smoothly. Look forward to seeing some of your amazing photos at some point.
Oh and I get that invalid HTML error all the time. I just ignore it and post anyway and things always seem to post ok.
Susie, how is Dibley enjoying his stay? I would also do anything for a (quorn) cocktail sausage
Edinbird. Bloody annoying about the boiler!! Hope your plumber gets it fixed today and more importantly doesn't charge you too much given you've already spent a small fortune on it.
Just got to the Serpentine. Still hardly anyone about. Just me and the geeses:
Back to Edinbird. Hard as it is I'd try not to worry too much about every ache and pain the day it starts. If it is still there/gets worse the next day, then call your BCN. Or if it is severe on day 1. Otherwise try not to fret, or we will all be fretting constantly!
Really sorry that everyone is suffering so much I feel a bit guilty that other than my fingernails jumping ship, and mildly achey legs, I'm not too bad at the moment. But I think I'll be getting my anastrazole or letrazole prescription tomorrow (still don't know which one he is putting me on) so maybe my time is still to come.
PS sun's out now. Ahhhh. Lovely.
Wolvesgirl, glad to hear you are feeling a little better now. It really is quite traumatic ending up on the acute ward for a few days isn't it. I had a particularly unpleasant stay myself after my first T, and like you I was stomping my feet and saying "enough! I'm done!". Especially after I asked my onco nicely for a dose reduction and he refused. But here I am, I got through it all, and much as I hated every second of it I guess I'm glad I did it. Belt and braces, as you said...
Just passed a cool statue:
And the queen's guard out for a trot:
I'd forgotten how much I love a trip to the London office!
Rosina I am glad that your return to work is going well and you still have the energy in the evening to have a little walk or do yoga/swimming. Makes all the difference compared to just coming home and collapsing in the corner....
Ok I'm at the office now. Will continue later.
Actually I'll continue now as there aren't any hot desks free so I can't do any work anyway got a meeting in 10 mins so not a biggie.
Sonia, carpal tunnel syndrome is no fun hope your doc has an idea or two.
Nettie, glad you survived the grandsons! My mum and dad didn't once babysit mine, in fact I never got a night away from the oldest 2 lads until they were teenagers. So bless you for being a star and giving your daughter and son in law a break!
Have fun on your LGFB course, I enjoyed mine more than I expected to, and didn't emerge looking toooooo Aunt Sallyfied although I definitely didn't get as much useful info at mine as Susie B did at hers... they just slapped it on without too much talk.
Right, going to post this quick before the clients turn up
Catch you later!
Love to all x
Good luck for the makeup session! I did a good job of making myself look like I’d been punched in the face when doing the eyeliner 😝 so nothing new there. And I was t impressed by the eyebrow lady either.
Well my leg stopped hurting, iced it then put the electric blanket on and sat in that for about an hour. Slept on and off but felt quite cosy. Had to get up early for the plumber which was annoying and then they called to say before midday! Grr. I guess someone’s house may have flooded or something but I would have liked another hour. I feel a bit groggy. I’ve been off the sleeping tablets a week tonight though so that’s good.
Might finally get some things I have taped watched!
The LGFB session wil give you the opportunity to relax a little after spending time with your grandchildren. From my session I learned a few new tricks including how to apply highlighter and how to make eyeshadow stay on for longer. I also gained an insite into how different moisturisers, night and day, work. Although I haven't lost my eyebrows yet I use a mix of fibres and pencil which I have never had the confidence to try before. Goes to show you can treat an old dog new tricks🐕🤹♀️🤹♀️🤹♀️😃😃.
So enjoy you time there and don't forget to tell us about your goody bag.
Susie B xxx
PS, hopefully you won't need the wet wipes. Oh just remembered we were told about them too☹☹.
Oh Sonia, I'm with you Hun, I boasted too soon the other day! This morning I was rudely woken up at 5am with two drunks arguing outside....so that about 4 hours kip for me....it b l o o d y stinks!!! Grrrrr
nettinoo, you may well need those wipes, on my course the lady drew me Groucho marks eyebrows (!) hubby thought it was damn hilarious when he came to pick me up...lol
I love you all....now off on my rounds then a snooze if I can manage one xxxx
I am so sorry to hear that you joined the wide awake club last night☹. Not being able to sleep is frustrating, annoying and deffinitely debilitating😩😩😩😩. We are all made fully aware of the the side effects of chemo but it seems you are told little about the side effects of everything else. Try and rest as much as you can today.
Susie B xxx
Morning sweeties, quick check in to let you know I am back home from my daughter’s after looking after my grandsons. Exhausted but it was lovely to spend some 1-1 time with them but they argue with each other a lot. Currently at Stafford station waiting for train to Wolverhampton as have my “Look good feel better” course this morning. Probably past the stage when I really need it but who can resist free goodies? I have wet wipes in bag in case they make me look like a drag queen. 😂
I’ve had enough of these B l o o d y side affects!!!
Ive tossed and turned for over an hour and a half, woke with hit flush and carpel tunnel is so pain full I can’t get back to sleep. I’m seeing oncologist next week hopefully I can try something else, as I can’t live with carpel tunnel again 😩
moan complete, now been awake for nearly 2 hours and have just entered the wide awake club !!
I am defo. an AM person. Have walked. Aim to be at work early tomorrow. I also aim to leave by lunchtime/ 1 pm.
Off to shower then bed. Unwinding and sticking to good habits.
In the past I would be doing more work stuff on my laptop.
I am going to do my best to do 8hrs sleep,8 hours work and 8 hours of leisure 🤪
....and I'm still stuck in the office at half past 6 with no imminent sign of escape :/
But to be fair, I did NOT get to my desk at 7.45 this morning it was closer to 9.45 .... oops ..... I'm not a great getter-into-work-on-time person
back home today at 4pm having got in to work at 7.45 this morning.
I was enjoying myself and at the same time want things to be in place for the students who arrive tomorrow- so the being ‘ phased in’ got a tad de- railed today.
Thursday though I will be going in later as I have a Hospital appointment in the morning ( post treatment review with the oncologist).
Exercise wise I swam for 15 minutes and did a yoga class 45 minutes yesterday evening. Very chuffed with myself.
Slept well. I must stick to getting to bed by 10pm. No excuses.
Hugs to all,
Thanks for the very supportive message. Now of course I am feeling better I am feeling a bit more pragmatic about it all and will have a good discussion with the consultant rather than just stopping and not listening to any advice (which is what I felt like doing last week)!! I am having FEC-T and it was my first cycle. I have had a wide local excision and then a SNB as initially they thought it was DCIS so were a bit surprised when it turned out to have some grade three TN cells in the middle. I know I am lucky - the nodes were negative and the cancerous cells well embedded in DCIS so this chemo is belt and braces stuff to be followed by radiotherapy. Thanks again - everyone on the forum have been fantastic and I really appreciate it. xxxx
Quite a conundrum concerning your aching legs. Could it be left over niggles from T? I've read that symptoms can occur after treatment stops. Are they being affected by a draught from the fan or window? Whatever is causing the problem I hope it gets sorted soon. I'm a fan of Master Chef too and wad determined to watch it. I thought if I was really tired I would get a decent night's sleep😴😴😴🛌🏾. Nope! My body had other ideas for me. xx
Edinbird just so you know you are not alone my right foot/ankle is still numb and now it has moved round to my heal. If I rub the area I get a funny sensation so I expect it is nerve/tendon damage still recovering from T. This is also where I have my moving around so-called exzema!
Morning. Just! xx
Im feeling rubbish today. Stayed up until 10 watching Masterchef and then had been in bed about 45 mins when husband comes through complaining about the boiler making noises again... it’s doing exactly what it did back in June before we spent nearly a grand on it!! So we were both wide awake again. When I was watching TV I noticed my leg was aching, my right one has been doing this more than the left and normally in the morning and particularly if I’ve had the fan on or the window open. Not sitting watching TV in the evening. So that was bothering me too.
This morning the ache is lower down my leg and my little toe and along that outside part of my foot is a bit numb. I’ve spent ages sat on the side of the bed comparing each calf in the mirror and feeling my leg, is the right one swollen is it not? I can’t tell. I’m sat here with a heat pack on my foot to try and warm it up at the moment. I had a good walk yesterday to go and get my doctors note and my legs have felt a bit more sore after exercise but this numb foot feeling is new.
Plumber is coming out tomorrow I told them we’ve already spend a bomb and good job it’s broken when I’ve been off sick for a month and next week back to work! Lay it on thick! I hope it doesn’t take much to mend. I put the heating on once yesterday and that’s all it took to break it 😩
So now I’m tired having been worrying about that and my leg and now I have to be up early for the plumber tomorrow 😞 unless my leg suddenly swells up or gets red and hot (it’s neither) I think I’ll leave it until I go to the breast clinic for the radiotherapy appointment on Thursday and can ask the nurse there. Keep looking up DVT and it says it should be more sore when doing activity but it aches most at rest. The area where it aches moves around too. I hate how very little niggle you panic about the worst now 😢
Hot fest is now giving me a hot flush so I guess I’ll just sit here and try and find a comfortable position to sit. Maybe try and walk later see if that helps. Hope everyone else feels better! xx
Oh dear, we do seem to be having problems with sleep deprivation, tiredness😪😪😪😪 and aches and pains. At least I know mine is due to T and months of treatreatment catching up with me. Lost count of how many trips to the loo🚽🚽🚽 I made last night so yet another broken night's sleep. I'm knackered.
Good to hear from you Ocean21. I also had the message recently regarding invalid HTML. Didn't have a clue what that was about either🤔🤔🤔. Nice to hear that you've had some family time whilst having radiotherapy.
Marlyn, not a good start to your day then☹☹☹😩. First an unexpected cold shower🚿💧🌊 then problems with doggy do dos🐕💩💩 all after a bad night's sleep Hopefully the rest of your day can only get better🤞🤞. A 3rd heart scan, you're certainly getting your moneys worth.
Implausible, I felt totally exhausted after reading your excercise programme🏊♀️🏊♀️🚴♀️🚴♀️. As for the batting on the other side hairstyle that did make me laugh😅😅😆. I'll have to watch out next week when I get my hair cut.
MJB, bet you'll be glad to see the back of the heart monitor. It would be good to get your results when they remove it. As for the lymphodeama excercises and lymphatic drainage shown on YouTube I watched them and wrote down an idiots guide so I can follow the routine without watching the film each time. Only doing them on odd ocassions at the moment as I don't know when my 1st follow-up appointment is and I would like to see how my body is coping when doing normal stuff.
Sonia28, a busy few weeks ahead indeed. The Southampton Boat Show, I remember it well from my childhood. My parents couldn't afford a boat but a 'must do' thing to do when you live just outside Southampton.
Right let's see if I can manage a short walk with Dibley, that's if I can persuade him to get off his bed. If all else fails he'll do anything for a cocktail sausage.
Have a good day xxxxxxx
Sorry for the silence ,had my eldest son and family over for a couple of weeks. So lovely to see my grandkids, miss them, house is so quiet without them.
Anyway, I’m good. Plodding through rads. No problems so far. Another 12 or so to go.My skin is keeping well. Use the cream radiologist prescribed and a factor 50 sunblock after each session.
I’m having rads on my right boob and to be honest, it’s the skin on the right side of my neck that I’m having to watch out for. Stupidly, got carried away gardening over the weekend.Had a hoodie on but no sunblock so now my neck is itching. Will slather on some cream before bed.
Haven’t managed to read today’s posts. Will catch up with everything later.
Hopefully , I can post this.Apparently, I included an invalid HTML in what I wrote. No idea what that is and no note on what was so problematic.
mjb, everything crossed for your heart results, it must be a relief to not have to wear the monitor anymore.
Im about to go for my heart scan ( 3rd one) by eck I can't complain I'm not being looked after!
I shouldn't have boasted about sleeping better, I hardly got a wink last night! That will learn me....
my day didn't get off on a good foot, I managed to spill a whole liter of water down me whilst lying in bed taking my bone pills.....then discovered my dog had galloping diarrhoea in The hallway, I gave her some beef last night....never again...
Im joining you all on the aches and pains, mainly my lower back, wrists, knees and ankles.....first think in the morning I'm like Douglas barder walking around!!
Daisy, I can't do much on the exercise front either, I feel chuffed if I manage my 20 min walk....going upstairs still leaves me panting like a hot dog...
implausible, you made me giggle ref the butch lesbian thing, we have a lady in our neighbourhood who rides the other bus and she's started to notice me!! I don't know if I should smile back....lol...who knew!!
Rosina, good girl getting that first day done, bet it felt pretty good.....hope today is a good one too..
before I forget my mammogram is booked for January, it will then be exactly a year since my operation....the very thought of having my boobs' squashed in that machine makes my hair Stand on end ( now that I have some)
Well, I'm orf.....be kind to yourselves my beauties, we're all at different stages but ultimately have been through hell and back and I can't imagine doing it with anyone but you lot.....thank you xxxxx
Just read you are interested in excercise for lymphodema. I found the ones I do on the cancer research website, I also found a dry brushing technique on YouTube which is designed for lymphatic drainage. They were both easy to find. I really think they have helped me as I was having a lot of swelling about two months ago mainly in my reconstructed breast and under my arm. They were even talking about me having a sleeve. Not last time I went though as she was really pleased with my measurements.
I am taking Letrozole I take mine in the morning. I have been on them now almost six months and only now can I feel some joint stiffness mainly in my neck, wrist and hip. Hate any new niggles as I always think the worst!
Last day of my heart monitor today. I had an echo on Saturday so not sure if I will get any results later.
Hope you start to get some better sleep soon. X
Daisydi, if it is any consolation, I ache from head to toe this morning, could barely get out of bed! think I overdid it a bit....
Evening, Sarah I wish I had half the energy that you seem to have. I just cant get anything done as Im too tired. Been trying to find out what is the best time to take Anastrazole and every single thing that comes up just says you should take them at the same time every day. Just found an old thread on here from 2016 about people having the same problem changing from morning to evening etc. but it didnt work. Its not so much that Im tired during the day as the fact that I am hardly having any sleep and I know I cannot function for long without proper sleep. I used to be a radiographer so yes a very physical job but I had to give up work to take care of my mum when she developed dementia and there is no way I would go back to it. I took my NHS pension very early (you cant do it now) but it is not enough to live on and I was just doing bits of cash in hand work, washing up at local cafe etc. but Im not doing anything now just raiding my lifelong savings to live on. I cant really afford to join a health club and I am desperate to start swimming but the private pools are quite expensive. I did think of maybe equity release on the house but I am still a bit too young to do that. Cant be bothered to worry about money. What will be will be. Regarding lashes I thought mine were growing back (and indeed they are) and I tried to put some mascara on the other day but I have about 2 lashes on each eye which obviously survived the chemo and they are really long and curly (curling in the wrong direction) and looked ridiculous so I had to take it off again. Not sure what I can do with them. Maybe trim them down?
I thought the yearly mammo would be from surgery so I havent a clue when mine would be as I had surgery in October, November and January. Nails are still looking rubbish but I havent lost any.
Sonia looks like you have a busy time ahead. Hope your joints improve. My knees have definitely got better since I've started on the turmeric capsules again.
Anyway so so tired. Please let me sleep. Night night x
Rosina, glad you managed your 1/2 day at work. I will be taking full advantage of my phase return.
Daisy and Marilyn, I think taking medication at different times helps, I’m on
Exemestane which I take in the morning as I feel like I don’t have so many hot flushes during the night, I still have them but not continually. I’ve just bought a chillow, it helps a little but I just would like a magic wand. My eyelashes are making an appearance again 🎉🎉they are short but they are there, I was beginning to panic as everything has just sprouted.
everyone’s hair is coming on so well, who would have thought that a few months ago, mines curly where the underneath is growing, so tends to make my hair stick out, I straighten it today for first time, make it look almost normal, lots of grey, not nicely Subtle like yours Sarah.
Susie, I hope your managing to rest when your tired. Only 1 more to go, on the home stretch now 💕💕
Seaside Sar “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?”
Well I’m not sure what the cause is but I’m not on Herceptim or Tamoxifen but my joints are so painful especially my knees and ankles and wrists., so maybe it’s just residual chemo effects, like you say who knows.
when I went to the lymphedema clinic last week, she said looks like the swelling is getting better and there is not reason that it’s happened, come back in 8’weeks and she’ll check my measurements again. I was hoping for some exercises or massage tips.
Edinbird, hope it wasn’t too cold when you had to go out today, the temperature has certainly dropped down here.
Sarah, you look so happy to be back at hockey😘
love all your pictures, I’ve downloaded that app.
Well i I have a busy few weekends, off to
Portsmouth to drop eldest back to uni this weekend, then next weekend we are looking at Cardiff uni with middle daughter, then Southampton boat show on the Sunday, weekend off before heading up to London on the last weekend in September, that thought of it all is Wearing me out.
Take care lovely ladies xxx
Evening sleepy ladies
We survived Monday! Well, so far at least
Lucylump/Invernessbird - sorry I couldn't help with your query as I also had my lumpectomy surgery before I started chemo, but I see you have had plenty of reassurance from our other chemo-first girls. I hope it has put your mind at rest a little.
Daisydi, ta! I'm pleased that the brows and lashes have grown back so quickly. My lashes still aren't as long as they used to be but hopefully they will get back there. Now I just need my fingernails to grow back, have now lost 2 with another 2 hanging on for dear life.
And yeah I reckon the hair might go curly yet. I don't think I will like the grey so much when it comes with a granny perm might have to invest in some of those tiny travel straighteners as the ones I've already got are too big for short hair.
Edinbird, hope the docs visit went ok, assuming you did brave the elements. It has been windy here today too but sunny at the same time.
Hi Seaside. Sorry to hear you didn't get the added reassurance of a mammo today but glad to hear that nothing was found with a good poke and prod. From reading other group threads that are ahead of us, the norm seems to be mammograms on the anniversary of your original diagnosis. So I'm guessing that would be Nov/Dec for most of us?
I had to look up NED, not heard that term before. Just made me think of Ned's Atomic Dustbin, showing my age, and dodgy music tastes
As for hockey, I just checked the fixtures. Looks like you're at our barn on October 26th, which is 5 days after my op but I should be there. I didn't miss any home games after my lumpectomy (much to the disapproval of my doc when the hospital receptionist, who is also a hockey fan, grassed on me ) and this is a smaller op...
And we're at yours on Nov 3rd. I should be able to make that one if my other half doesn't mind doing all the driving....
Your chap will be able to see for himself that I am clearly not in my 20s!
Alternatively show him my knackered gym face below....
Hope your stiff joints improve soon, as sitting around in cold ice rinks doesn't help them at all. And your barn is freezing! Or it always used to be. Only away rink where I could see my own breath....
Rosina, sounds like first day back was tiring! Training always is. Plus being up half the night won't have helped. Hope you enjoyed it while you were there.
And we are Nuffield twinsies I defrosted my membership on August 1st and have also been trying to get my money's worth.... I'm a little miffed that I won't be able to visit much in October as I'm in New York until the 9th, and then have my op on the 21st. I'll have to make the most of the 11 days in the middle.
Susie here's hoping you have lovely sleep between now and your final date with the roids. That dog walking will definitely help.
You were very considerate of your peeps at home wearing your wig all the time. Mine had to put up with me at every stage from clumps falling out to totally bald. I couldn't be arsed with covering my head in the house. Hopefully my kids weren't entirely traumatised
Now I have a little covering of hair I don't even bother with a hat in public any more. I get lots more smiles from butch looking women now even my son noticed it in Tesco
Banana burps remind me of the King Kong ride they used to have years ago at Universal Studios in Florida. When you rode past Kong's open mouth his breath smelt strongly of nanas it was fab!
Daisydi if the anastrazole is making you drowsy in the day, I'd definitely try taking it at night instead. I guess we are all going to have to experiment a little with all this stuff to find a routine that works best for us.
What job were you doing before all this hit? Is it something physical? I think the only reason I've been able to work throughout pretty much is the fact that I'm office/desk based, and only need to engage brain and typing fingers.
Plus when I was feeling particularly rotten I was able to work from home. And some days if work was quiet I didn't have to actually do an awful lot.
Marlyn I think you are the first of us to find a medicine with a positive side effect! Long may your improved sleep continue.
My day has been quite busy.... no naps for me!
First of all, after reading Seaside's list of exercises yesterday, I decided I needed to do something out of the pool. So I spent 50 mins in the gym, 10 mins on the treadmill at an incline, then 30 mins weights, then 10 mins on the exercise bike. Then I rewarded myself with 30 laps of the pool and 10 mins in the hot tub. All this before 10am. Phew.
Here's me in the (Nuffield) gym. Definitely not looking like I'm in my 20s
Then I went shopping with my son (where I got my butch lady smiles ) and then came home and drew preliminary sketches for a small book I'm making about an astronaut who gets stranded in space:
(Hope I'm not boring you all with my arty stuffs btw! I can't put them on Facebook/Twitter etc pre publication, so it is nice to have somewhere semi private to share them)
Then I walked into town (11k steps) and went to the cinema for a second watch of Once Upon A Time In Hollywood, as I enjoyed it so much the first time. And promptly undid ALL my good work at the gym with a bag of pic n mix
Just got home, and I am now, like the rest of you, sleeeeepy.
Catch you all soon
I can totally relate. I napped for 1 hour and a half and had my brother not phoned I probably would have kept sleeping.
I am going to yoga tonight as my gym membership has ‘ unfrozen ‘ and payment by Nuffield has been taken so I am not wasting my membership fee!
Hopefully I will sleep better, as last night I was so hyped up about going back to work I didn’t fall asleep till gone midnight .
I walked in to work this morning and that was lovely.
Just woke up from a 2 hour nap, ugh 😴
Rosina, well done for lasting as long as you did at work today. Hope you feel up to doing some yoga this evening.
Daisy, I'm aiming to go back to work after half term, assuming I don't need 2 hour daytime naps by then!
Off to aqua this evening. The thought of it alone is tiring me out but I know I'll be alright once I get there.
Thanks Maryln. Think I will do it tomorrow as Ive already had todays now. I also feel a bit sick a few hours after also so was thinking of changing so that hopefully I am asleep. Watch this space ...
one of the chemo nurses recommended taking the anastrozole in the evening, I take mine around 7pm, and not sure if it's my imagination but by 9pm I'm pooped!! Also, I've never been a good sleeper ( since menopause crept in) but since starting anastrozole I'm actually sleeping better.....not great...but better....defo worth changing your timings, will be interesting to see what happens.....xxxx
Hi everyone, thankfully it is cooler today but still no rain here. On a positive note it means my grass isn't growing so only has long bits around the edges and I just dont have the energy to cut it. I am seriously struggling with sleep deprivation and now I am wondering if it is the Anastrazole and whether I should take it in the evening instead of morning as I always feel tired in the afternoons but I cant sleep during the day so I go to bed really really tired but then cant sleep. Its making me miserable but maybe its the effects of radiotherapy and the fact that I still have sore bits and also still itchy. I've got some more antihistamines today to try and stop the itchiness. The pharmacist had a look at my neck and says it doesnt look so angry. Who would have thought that the only support I seem to be getting is from a random pharmacist.
Seaside Sar sorry you are still having joint pains. When are you going back to work? Glad you managed your first half day Rosina. Seems very strange with you all going back to work. No chance of me doing that for a while, if at all. Susie I have been told by several people that having dogs is a real bonus with this treatment as they make you go out for a walk. Mine wont go with anyone else so I have to go and always feel better for it. Saying that it hasnt kept my side effects away but I think it has helped my mental wellbeing.
Hope everyone else is ok x
Can't believe how tired I am today😪😪😪😪😪 but have to stay awake for our handsome guest, Dibley. Thanks for the improved photo Implausible🐕. On the plus side he did make me go out for a short walk which I wouldn't have done if he wasn't here. I did sleep better last night, thanks for asking Seaside Sar, but know the sleep deprivation will return on the 19th Sept😩😩. I had a phone call earlier from my brilliant bc unit as a follow-up to my onco appt last week when I explained I was feeling pretty low. They really do take on board everything you tell them and follow things up. Can't thank them enough.
On the hair growth topic it seems strange to me that along with everybody else my hair is growing not disappearing due to chemo. That said, only the hair on my head is growing. My eyebrows and lashes are just about hanging on but everything, and I mean everything, else has packed their bags and gone on holiday✈✈🛫🛫🛬🏖🏝🏜. On the plus side I haven't had to worry about unwanted hair being on show. Luckily for me I prefer short hair so it shouldn't be too long before I'm happy with the length. As for the colour🦍🦍🐺🐺🐱🐐☹, that's an entirely different matter. I am being very brave at the moment and not wearing anything on my head during the evening, even when my son is at home. He didn't see me with any of my bald patches at all.
Seaside Sar, I hope you establish what is causing your sore mouth and stiff joints. We've had so much pushed through our bodies I often wonder if we'll ever get to the bottom of the causes of discomfort. It's a shame you didn't have the expected mammogram but hopefully the check up has given you reassurance.
Rosina, hope your return to work is going well and not proving to be too tiring. Bananas will certainly help🍌🍌🍌🍌🍌. I have to be careful with them, they always make me burp😶😲😲🙊.
Hope everyone is ok and having a good if somewhat cooler 🌤🌤🌪🌦🌫day. xxxx
Hi Seasidesar, hope the stiff joints ease up. I am back home now. Left school at 1pm. I thought I would last till 4 pm. but I started to feel very sleepy and hungry (even after having my lunch) so as it is a phased return I decided not to push myself. School is great as they allow me to leave when I have had enough.
I plan to go to yoga this evening with my daughter.
Hopefully after a nap I will be able to!
Thank you so much Susie. That is really reassuring too. It is definitely not warmer up here Edinbird. Bloomin freezing! Xx
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
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!
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.
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!
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
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!
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
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.
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
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
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.
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:
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....
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.
Take care all
Going out for a walk after another 2 hour nap 😴.
Tidied up the front garden ( a bit) with my son :
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.
I was a party pooper yesterday, I only lasted an hour. I really am saving myself for tomorrow 🤗
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
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
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!