Angie, Judy and all,
Sorry, but my hair is definitely whiter and sparser than anyones and is not coming out in public for a long time!!
Fallen out nails are slowly growing in, but the ones yet to fall out seem to have slowed down to the speed of an ATOS claim process.
Angie, theres a thread somewhere on wrong things to say to us - its a very long thread........
I have my rads dates now, so that's my November gone. Still waiting for BRCA result, but onc said if its not in I should start rads anyway. This makes sense, but its not ideal - I'm really hoping for result before I start in case I will need mx.
Please let me know if anyone has any advice on this thanks.
Best wishes to all xxx
been to work again, its getting better, i didnt feel tired at all today just a little bit stiff. i actually worked as well! the hair is starting to grow now, i only wear my wig when i go out, if anyone comes here i just leave my head out as normal. one person visiting asked why i had had such a short haircut with winter coming? so i just said 'it fell out' then he said oh yea, i forgot!? we all just sat looking at each other very awkwardly!? he had been passing me in the car going to work and thought i had hair already. probably shouldnt have irritated me but it did.
caz p - cool hair, thats a nice comment : )
mel A - be nice to go to wales. ive got bio oil but i havent tried it yet.
lori - thats exactly right, salt and pepper hair colour, have we all got that colour.
philomena - are you in australia? lol
kate - woohoooooooooo
lynn - ive got tamoxifen too, maybe ask when i get my eyes tested, thats worth knowing.
debra - well done you!
maisocake - hope youre feeling ok
moira - maybe we'll all have christmas pixies haircuts come december
kim - are you feeling better in yourself, i think i am, people think i'm more like myself too
judy - yuk ive got 2 fingernails that i snagged which i'm hoping stay on cos i look like an old bag lady with the brown nails as it is.
have a good weekend ladies.
Congratulations Kate last rads today I had no 15 today just 4 boosters to go. Roll on next Friday champagne on ice.
Phenomena I hope you are pleased to be finishing work, no more work stress for you. You are so brave to go out wigless I have not been brave enough yet, the most I have done is answer the door to the postman and today I got a Tesco delivery and did not wig up, I will get there eventually it is just so short still. Your eyebrows are looking good I booked an appointment today to get my nails and toenails done for my holiday, if I have enough eyebrows by then I will definitely get mine tinted they are so fair.
Amber hope you have a great holiday.
Judy you are the technical one, I have a virus on my. Laptop think I need you to help me fix it, my son has promised to have a look hopefully tonight.
Lori enjoy York lovely place spent a weekend there a few years ago.
Mel a enjoy your break in Wales my daughter lived there fir a couple of years just outside Cardiff.
Debra congratulations s on Surviving chemo welcome to the platform.
I had my regular check up at the opticians yesterday as I wear contacts he was really pleased with my eyes no deterioration I think he was surprised he says the tamoxifen can leave a film on the eye surface so wants to see me again in December. He is an independent but I have been really pleased with his service and concern.
To everyone else I have not mentioned have a great weekend. Lynn x
I'm feeling a bit exited tonight as we've just had a mental moment and booked a last minute holiday in Wales at half term - just before I go back to work. I'm really looking forward to it. My pooch can come too so lots of nice walks and fresh air.
Debra - well done. You've got through it all despite how hard it has been for you. Get dancing on that platform. I'm really interested in going to that talk. It would be lovely to meet you in person if you are going. 🙂 Have you got any rads to go through or have you finished now?
Mel - I've got to admit I was worried about falling asleep and snoring when I went to yoga. It's bound to happen at some point. 🙂
Amber I hope you feel good after your pampering today.
Philomena - eyebrows and lashes! I'm so jealous!
Sandy try dry eye drops for the runny eyes. It sounds daft but dry eyes can cause them to run.
Lori enjoy your time in York. I think you're right about the hugs and tears when we meet up. I can't wait.
Caz - what a lovely comment about the hair 🙂
Diggy - well done for getting that first week at work done. Good for you going wigless. My daughter asked if I will be wearing my hat when I go back to school but I said no. I'm not hiding who I am. I told her to just tell the other kids I think I'm Jesse J if they say anything. That lady has been an icon.
Have fun on your wii fits ladies 🙂
Was out shopping yesterday and a young girl commented on my 'really cool haircut'. Was well chuffed, so just thanked her rather than explain anything...
I didn't lose all my eyebrows but they got very thin and very fair. I used to have them tinted and shaped and was thinking it was just about time to try getting them done as they are now a mixture of light and dark, so look a bit strange.
Good to catch up on lots of posts. I am also loving the energy, humour and general positivity!
Angie and Mel - Both of your posts had me in stitches and have inspired me to drag out the Wi- fit to charge up for tomorrow. (I too snore, so going to any kind of classes with post chemo fatigue is out for me now). Maybe we can encourage each other with our virtual decreasing Wi - Fit ages. Will let you know mine tomorrow. (Honest).
Philomena - You have eyebrows and lashes. Really?? How long did you finish chemo, I can't remember now. Wish Niamh happy birthday from us. Sounds like you all had a great day. Were going to Notts Centre Parcs. Sherwood Forest. Teaming with lots of squirrels, ducks, birds, and wildlife. Our favorite. We went to the one up north Winfell and not nearly as much wildlife there for such a rural location. Surprising.
Amber - Tangoed or not have a lovely time in Spain. Have a sangriare for me. (Or two).
Fecenora - My OH often sticks his big toe up the tap to relieve his athelites foot. May have to stick some super glue up there and call the Fire Brigade. Lol.
Rozz - Drains for 3 weeks. Really??? Oh joy!
Judy - Are the drains painful? How big are they. Sounds like something out of a horror movie.
Lori - It's lovely to hear from you. Were all so close now. When I was DX I had to have anti- depressants which got me through that tough time. They worked a treat and I stopped taking them 3 weeks later on my own.(Figure I might need the repeat prescription I kept for when I wake up with the drains). Lol.
Pauline - I too have the muscle aches and pains. It must be from the docetaxol as ive had no rads yet and my joints are ok. Do you have eyebrows and lashes yet?
I also have extremely runny eyes. Mostly if I go outside but can happen indoors on occasion. Has anyone been given anything for this? My eyesight is worse too. Never needed glasses for anything (apart from red vino) but now have shop bought low strength reading glasses. I am going to ring specsavers after this post to see if I should wait for an eyetest until the chemo effect is out, and things have had a chance to recover, or if I should have one now. I'll let you know how I get on.
I also still have the odd indigestion bout but don't know how long to take the Lansoprozole for. Any of you still on it?
All angels going through or just finishing rads my thoughts are with you and wishing you minimal side effects. Lv n hugs to you all. Sandy. xxxxxx
I used to do yoga for a long time, but I always fell asleep during the relaxation bit at the end, and embarrassingly sometimes woke myself up snoring. The teacher used to pointedly remind us to try not to fall asleep as that was not the point, but to deeply relax ,while looking in my direction. Thing was I never knew how long or loud Id snored before I woke up. Think I might try it again......
I do some stretches every morning, a combination of excercises given by a physiotherapist for a lower back injury and some of the BCC post surgery arm movements, but guess what - none of them were new to me, they are all variations on yoga moves from various classes I have attended over the years!
The physiotherapist said to regard the back excercises as ongoing maintainance.
If you can find a good yoga teacher, go to classes. Your body and mind will thank you. There's no substitute for a good teacher talking the class through the moves and ensuring you are doing postures safely and correctly.
Pilates is good also for 'core' strength.
Teaching relaxation is an art, not like one class I went to, when we were to envisage relaxing in the bath with all the scented tea lights and pamper stuff, then slowlt and gently put your big toe into the tap, THEN, realise it was stuck and have to call the fire brigade (at which point we were all knotting ourselves), then a team of hunky firefighters bursts in and rescues us............Yes, honestly, we were all creased up by this point, I don't even like baths, much rather have a shower....
believe me, i wouldnt waste a kitkat on a wii !
do you think the yoga thing is worth doing? i know nothing about it but ive seen it done at 'maggies' when i was in inverness. it looks like a steady, gentle way of getting some decent movement back and the wii does have a good selection of exercises. got to start somewhere, i wouldnt go out to do it, so i might as well use what ive got.
had a crappy day at work, legs didnt want to walk, arms didnt want to stretch so i thought i'd get my wii fit board out and loosen up a bit............
it might as well have said 'oi fatty, how many pies have you had?' it weighed me and did my bmi and said i was obese and 6 years older than i am - bit cheeky isnt it!! so i did a bit of slalom racing and had a walk with a virtual cat and burned up some calories lol. then the batteries started playing up so i put the telly back on and got a coffee and a kitkat.
actually i got it out to look at the yoga options to try and loosen me up a bit, when i get new batteries i might get to have a proper look.
hope you are all well, we seem to be picking up just lately dont we.
angie the pie gobbler
I've had the itchy skin too saw nurse last week after rads she gave me hydro gel to put on skin and told me to take ani histamine said the rads makes the body produce hystemine. The gel is really messy. Sticks to everything but the itch goes for a while. All the dressings I have are too small.
Glad your energy returning Roz mine is still low my appts are all in the afternoon this week so that's all I've done go there and knit hats.
Hope you get back out and about soon Mel nothing worse than being stuck in doors.
Take it easy with exercises Judy you don't want to do yourself an injury.
Hope the ticket is a winner Kate, one of my school friends worked beside a guy who won 2 million just last week needless to say he has resigned. Someone's got to win it.
I think it is expected we will have some tingly pain during after Rads Angie read it somewhere I think. Can't remember where.
Amber hair back on my legs too absolutely no eyelashes, eyebrows are so fine and fair can't see them hair on head not growing fast enough wish I had the confidence to go au natural. I got another wig which is better than the original should do me untill I've got a bit more mine is all different lengths and fuzzy at some bits.
Kate I could do with having a car boot sale so much unwanted stuff in my garage will get the strength to get rid of it some day lol.
Mel hope the last Chemo is not too bad.
Everyone else sleep well I've become a bit of a night owl these days. ( knitting)
Take care Lynn x
Judy – I had twinges and itching on my mx scar for a while – I still get occasional twinges. I have a big patch of skin with no feeling in it – although sometimes that bit itches and when I scratch it I can’t feel the scratching! Weird, but normal I think. Hope the cording gets better soon.
Phillomena – fingers crossed for the angio results Don’t go mad on the power trainer in the meantime tho! What cake did your daughter decide on? I used to love making cakes for my boys when they were young.
Angie – thanks for the tip on camisoles & tight t-shirts. I did a bit of googling but decided to wait and see if I get a problem. The skin on my chest is quite pink and a bit itchy but I haven’t resorted to the hydrocortisone cream yet. (apparently better to use this than scratch the itch!) I’m over half way there now, but 5 weeks feels like a loooonnnng time! I know exactly what you mean about walking like a starfish – me too!
Mel – I’m with you on the boob-outing. If my skin reacts badly I’ll stay indoors (except for dog-walking, in a big coat). I can cope with stupid hair, but not unfettered mono-boob! Hope your skin settles down soon.
My energy is coming back, unless I do something really stupid like running up stairs. I’m planning a trip to John Lewis tomorrow as a test run. BTW – my recent weight loss was water, now watch out fat!
Hope all you other ladies are coping ok (or having too much fun to post!)
All of you who are itching - i have very itchy boob following rads. I'm 6 days post rads now also skin started to peel off today. Finding it difficult to leave the house as can't wear bra and I'm an FF as well. Just not happy to take them out in public so to speak.
Amber - Rod Stwart - so jealous. sounds like you've got a fab weekend planned.
Kate- I'm dreaming of hair too! I have a fair smattering that starts to grow then when I have CMF it thins again on top and receeding hairline. It's stuck at about 2 mm. Had to shave legs today though- still no eyelashes! How unfair!
Angie - hope you're feeling better after couple of days off. look after yourself.
Enjoy centre parcs Sandy- make sure you relax!!
Judy - I've had all sorts of pains and tingling/numbness etc for ages after surgery. Most of it has settled down now, but not cmpletely gone. Registrar said it may never go completely, especially round lymph nodes because of nerve damage. It's not bothering me any more though.
love to everyone else sleep tight!
quick question to mastectomy girls - i'm getting a lot of tingly pains around my scar - is anyone else? wondering if it may also be a delayed rads thing?
had 2 days off work so its not that ive done too much.
definately going to get a nice & easy tommorow amber!
Judy - great news on the treadmill, I was told to do as much walking as I felt up to after surgery so I walked every day but outside rather than on a treadmill. I have 4 more rads sessions and then have to see cosmetic surgeon in Oct or Nov about reconstruction - expecting it to be scheduled sometime the middle of next year but will have to see what he says. I am 85% sure I'm going for diep with the 15% being that I want to hear him say its the right thing for me too or at least for him to sound comfortable that its right for me.
I have hair on my head that is about 1/2cm long, my eyelashes and eyebrows are back, my lady garden is on its way back. Shockingly I had to shave under my arms and my legs at the weekend - that's just not on! I also have very fine white fluffly hair growing at my sideburns, suspect it was always there before but I didn't notice it as I had hair over it but now its got nothing to hide it I've noticed it! So far I haven't found any other hair I don't want!
Angie - good to hear you are taking it easy at work and that you have some answers about your aching muscles. My stiffness is definitely muscles so I suspect its tamoxifen for me too, hopefully what the nurse said on livechat on thursday is correct and all side effects normally settle down in the first 3 months - I'm relying on that being true as I can't cope with hot flushes for ever!
Philomena - hope your 13 year old doesn't request a cake that's too complex! If they are off school hopefully there will be helping hands in making it as well as requesting it!
Pauline - well done on the weight loss! I would love to lose a stone but having lost over half a stone last year I got diagnosed with BC so I'm not risking that again! 🙂
We had nice weather at the weekend which was lucky as my OH and I did our very first car boot sale! We sold a lot of my mother-in-laws ornaments and nick-nacks that no-one wanted. We sat in the sun making money - £128 profit in 3 hours! My OH even said he'd do one again as long as we have some stuff to sell which I know we have in the loft!
Hope everyone else is okay and not having too many SE's
i consulted my macmillan nurse today about the muscle aches and why am i walking like a starfish? but it seems its not the chemo, its the rads. delayed side effects being muscle aches - chemo would have been joint pains as well. so it should be gone soon, paracetomol if its too bad. so pauline - if youre joints are ok - its the rads.
mel A- had a look at the pauls cancer website, it looks good, especially with the input from the centre.
Rozz - i had no bra for rads but had a crop top instead with a softie pinned to it and then had a bit tighter tshirt over that, to keep the boob(s) in control. theres nothing to stick too tight to your skin then.
Judy - ive got eyebrows, the white hair but no eyelashes too. Got hairy legs though......... ive been refurbishing rooms, sewing and doing really lame jobs at work, so not really wonder woman.
Philomena - yes i'd make them all have a picc line too.
hope youre all well
Afternoon Angels - hope you all had a good weekend. It was beautiful up hear, spent most of yesterday in the garden! I intended to go into the office today for a few hours but woke this morning with really sore legs and arms, worse it's been for a while. Angie - you seem to be still getting pain too, it's wierd how it comes and goes!! I decided to just do a few hours from the house instead, hopefully I'll get in later in the week.
Lori - great to hear from you, sounds like your doing the right thing in getting some extra support
Mel - lucky you with the hair, I'm still a baldy! a few wee spikes here and there but that's it!
Sandy - I'm sure you'll have a lovely relaxing time at centre parcs, i've been to one before and it was brill
Rozz - well done on the weight loss, I'm still doing well too. Nearly at the 1 stone mark and hope to lose another 7/8 lbs before Florida at end October....then I'll put a chunk of it back on no doubt!
Have a good week Angels
ps think we have heard from everyone now about April so shall we get booked up soon??
Good grief, haven’t we been busy! It’s getting harder to keep up now most of us are up and doing stuff.
Pauline – I’d get some cushions in the colours you like and see what works in situ – as long as you can take them back and get a refund. I looked at some swatches recently and the one I liked had light green, orange and browns all together so I’m sure either or both would work.
Hope your return to work went well. I find being at work ok, but notice it when I get home.
Mel – I hope you feel ok now. It must be really hard having chemo and rads at the same time and of course you can’t think about going back to work yet. It must be hard for you hearing how some of us are getting back to normal and doing more, but your turn will come soon and you’ll gradually feel better too. Only one more chemo to go now? Hope your SEs are bearable this time.
Kim, Moira, Philomena & Mel hope your skin is improving. Mine is slightly pink, but I still have 13 more sessions to go so I’m quite worried about it getting worse. There’s no way I’m leaving the house without a bra!
I remember rose hip syrup! I’ve never had it “fresh” though – my aunt makes wicked elderflower cordial.
Amber – hope you enjoyed the Ideal Home Exhibition. OH suggested we went, but I’m not up to it energy-wise yet. I can do lots of short walks, or up to an hour with the dog, but not several hours of being on my feet. I’m still waiting to feel up to a wander around John Lewis!
Sandy – I’m going to fess up. I didn’t mention it before so as not to spook Judy but I had drains post-MX for 3 weeks. One of them gave up after 2 weeks, but surgeon said depends on the size of the boob. Mine was FF so a challenge! I didn’t need to have any fluid drained off though. So, assuming I was a worst case scenario, you should be drain-free before the time of your hols and up for most things. You may need to avoid the pool though, depending on how the healing takes. But you’ll be able to sit with your feet up by the pool with your new cossie on looking glam and get your family to chat to you now and then. You should also know that the spas at Center Parcs are excellent….
Judy – good news on the scan! Woo hoo!! A massive relief, I know. Hope the mx is healing well now and the cording is getting better. Sorry to hear about your MIL, hope she recovers quickly, but do try to keep the arm exercises going – my mx arm now has better rotation than the other one – weird!
Lori – well done for getting some help. There’s no “normal” way to react to the situation we’re in. Hope the anxiety gets better; have you tried meditation? My friend suffered really badly from anxiety after a brain tumour (non malignant, fortunately) and this really helped her. Me too, but I’ve lapsed a bit recently. I recommend Headspace – its available on line & you can try it for free.
Angie – good to hear you’re enjoying work. Yes, I still get the occasional tax-twinge, but less often now. I still have the water retention, which is gradually improving – and I lost 7lbs last week as a result! I can’t feel the middle 3 toes on each foot yet either, but its so good to feel so nearly normal isn’t it. The book you recommended is now on my Kindle. Did I mention I was a readaholic?
Mel - Who’d have thought shaving a bikini line would be cause for celebration?! I live in hope. My “lady garden” is still pretty bare. Eyelashes seem to be reappearing. Eyebrows sprouting in all the wrong places though. I’m booked in for a haircut next week; straggly old hair to be cut back towards up the new (very short) growth. I’m hoping they’ll meet up by Christmas!
Have a great week everyone, whatever you’re up to.
just to say, re the coping with anxiety and stress, ive had a few strange thoughts but i found a book called 'The cancer survivors companion' written by Dr Frances Goodheart. The first couple of pages are an analogy of someone having cancer, it made me sob, so true, i couldnt have put it better myself - the rest of the book is very practical, makes you think about what you are thinking, just self help stuff.
p.s. anyone who had tax still getting the aches?