Hi all.
I’m with you on the tiredness Sal. I too feel more tired than on chemo. Prob a combined post-chemo, tamox + rads tiredness. But I thought I would be much less tired than I am. So making the most of not working just now.
Yes, i think the underwired bra thing is just during rads as they might hurt adi. Forgot to answer your question in my last post (memory loss - another SE, to blame on tamox maybe?!) but thanks to Sal for answering! My skin is getting tender now so have no desire to wear an underwired bra anyway. I’m going with a combination of no bra, secret support vest top or cropped top bra thing, depending on where i am and what I am wearing.
Sal - i’ve done 9 too but I’m not quite halfway yet as I have 25 to do in total. My finish date is 3rd August. Planning (hopefully) a week in Tuscany in September so hopefully my skin will be ok by then. Where are you going in Scotland on your bike? Bring plenty of Avon skin so soft if you’re going to be spending any time outside (when not clad in leathers). Its good for deterring the pesky midges!
Has anyone else started rads yet?
Hope everyone else is well.
Al x
Hi everyone, I have my rad planning thursday, then dont start till end of July, as been put back a week so that I can go to my sons graduation. How is the planning? dont know what to expect , the hospital is a 70 mile round trip, which is going to be a pain.I have booked a week in madrid the first week in september, then back to work, as my fpay finishes on 23 july.Does anyone know how long it takes to get over the rads, Im having 15 doses, but really have to get back to work asap, no one else to pay the mortgage:( Hope you are all well Lesley xx
Morning everyone hope you all ok.
Sal/Al - can’t believe that rads causing even more tiredness! I don’t think I can cope with any further fatigue. Just starting to get a little bit of energy back and finished chemo two weeks ago. Just hope that I have had my share of tiredness!!! Thanks for the advice on the bras girls. Keep planning those well deserved holidays ladies. I am planning mine in my head only at the minute as do not want to tempt fate as already behind schedule. Believe me once I have finished rads, there will be no stopping me… Need to also start Arimidex in couple of weeks. Can’t believe need to pill pop for the next 5 years.
Lesley I have a long journey too when finally start rads and that is the bit I am not looking forward to. Hope tiredness does not hit you. Enjoy Graduation and take a hanky!!! I can picture that lump in throat. You must be so proud of your son. Hope you manage to work ok, unfortunately the bills don’t go away do they?
Lisa good luck with your op on Monday - I believe you are having it on the 18th. Will be thinking of you.
Lizzy hope you are doing ok and getting on with rads.
Take care everyone xxx
Hi all,
Still no word on start date for rads… sorry everyone is so tired with it, I have heard this is an se from a friend but was trying to ignore it!!! Oh well, I need to drive back to to the UK the minute they are finished with my 5 yr old so I hope it doesn’t wear me out too much. maybe this waiting will give my bod a bit more time to get over the chemo. My legs are actually worse than ever, last night I had to get my little girl to massage them… and my tingling feet and toes! Child labour! I need to be in the UK for school start in September and I have to have 25 rads (5 weeks) so they better get their finger out! I wonder what would happen if I missed the last 5 and had them later in the UK? Any ideas?
Not a brilliant morning so far, got up to dog vomit all over the sofa, then noticed my white porch curtains covered in blood and bodily fluids, and found 1 and half dead kittens at the bottom of them… yuk! Then after I flushed the bleach water that I used to clean the mess up down the loo… the flush handle came off in my hand! OH just called, the car in the UK is dead and we can get 80 quid for it scrap, but need to pay the mechanic 70 for taking engine apart! Oh well… bring it on… I have had worse news!
Going to take my dogs for a walk now… lets hope I don’t get hit by a car or catch on fire!! lol
Lizzy xxx
Oh dear! Sounds like you’re not having the best day lizzy! Hope there are no more bodily fluids to deal with. Did you manage to get the handle back on the toilet?! Take care on your walk!
I’m sure if you need to finish your rads back in the UK, there will be a way to do this. Do you know which would be your nearest hospital? Perhaps you could contact them and let them know your situation? Hopefully they will get you started soon and it’ll all be over and done with over there.
Adi - you’ve definitely had more than your fair share of fatigue already, so I’m sure you’ll be ok with rads. It’ll probably be a breeze compared to the weekly poisonings you’ve had. I’m not sure why i’m so tired - I thought it might be partly due to all the hayfever drugs I’m taking, but I’ve stopped taking those (there is a lull in summer up here…) and am still just as tired. So must be the rads now.
My eyebrows are growing nicely now. Well, perhaps not nicely. They seem to be much wider than before. Will have to start getting them into shape at this rate. They still need a lot of colouring in, as they’re a bit sparse, but its a start. Head is annoyingly still very fluffy! Had another physio session on my chemo veins today which again was painful, and got taped up again. She said it will take a while to notice any improvement but if I leave it without manipulation that it will take much much longer. So i’ll go with the painful squishing and pressing of veins for now…
How are you doing with your rads Sal? I guess you’ve had number 10 today as well? Your half way point, yay!
Hope you have a great time at your son’s graduation lesley. My rads planning was fairly straightforward - took about half an hour or so. They just line you up on a simulator thing, and do lots of measurements and draw all over you in pen (tip: wear dark clothes cos the pen came off all over my white top and bra!). And if you’re getting the tattoos as permanent marks, they do this as well. It doesn’t really hurt. I had 7 of them but most people seem to get 3 or 4. They tell you what you can and can’t do during rads and that’s about it really. Sounds like a long journey for you to get there - are you getting hospital transport? I’ve been driving myself but I’ve not got as far to go. I think everyone reacts differently to rads so I don’t think you can guess when you will be over the fatigue and tender skin. I’ve been signed off until 2 weeks after my rads, but my doctor said I can have longer if I need it. I’m on half pay though so will prob have to go back then.
Good luck for next week Lisa.
Al x
Hi all,
Flippin heck am glad its not just me with this blinkin tiredness Al, i am having to have an afternoon nap every day, i never even had to do that on Chemo!!
Have got a few sore bits underneath my breasts but they say its ‘normal’. Ho hum!
Yep thats number ten done today Al half way there.
Adi I have everything crossed for you that rads is a breeze! I have a fairly long journey, friend takes me in on his way to work (all my appointments but 2 are at 8.48 ) and then i get bus from hospital to city centre then train home. So its about a 3 hour round trip each day obviously longer if i indulge in retail therapy and lunch!
Gosh Lizzy it never rains but pours with you! Not sure i could have faced that carnage first thing in a morning! I think you might be ok to have last 5 in uk if there was no more than a couple of days gap inbetween but i know they dont like to stop and start rads, they like us to get a good intense frying!!
Have a nice week lined up next week, after rads on Monday i need to shoot from Leeds to York to have my LGFB session, then on Friday am going to the haven with a friend i met on here for another make up thingy with goody bag!! Am looking forward to both but especially the haven one as my friend and i are a bit naughty and giggly when we get together and we will have such a laugh.
Al will have to speak to OH about route, i do know we are going up the East coast to start with after that i think i zoned out !
Have a lovely evening all, think a white zinfandel is on the cards for me!
Lots of love Salxx
Hi everyone
Just been catching up on this thread. Everything seems to be moving along for us - can’t believe that nearly six months have we started.
I’ve had 9 of my 25 rads and feeling fairly ok so far - a bit emotional but could just be like that anyway I suppose, or it could be the tamoxifen? Not that tired - though maybe that’s because I’m not doing much. Skin a bit pink and putting lots of cream on, so will see how that goes. Starting back at work (which is only part time anyway so hopefully wont be too bad) this week.
My son hassling me to use my laptop so go to go!
Love and hugs
Helen xx
Al - is that any sort of skin so soft for the midges as there are a few difference fragrances? I am also off to Scotland next month and hoping to keep the midgies at bay!
Helen x
Helen - I didn’t know there were different types of skin so soft. Here you can buy it in outdoor shops as well as from Avon. If there is an ‘original’ one, i think that’s it. Good luck avoiding them!
I’m now just over halfway through my rads - number 13/25 today. And still as tired! Going out tonight so had a wee afternoon nap so I can last the night. The rads nurse gave me some alcohol wipes to clean off the pen on my chest. Though I’d already decided to wear a high-necked top to avoid the problem!
Hope you all have a nice weekend. Weather looks like its about to turn bad!
Al x
Good Morning All,
I have just been catching up on your posts. So glad that chemo is over for all of us now.
I’m so sorry for not posting for a while. I went to the younger womens forum a few weeks ago and it was great to meet other women who knew just how I felt. It’s been a strange few weeks since then. I have really tried to get back to some normality and have been back at work this week. It’s been hard as I’m still so tired butI’m glad I did it. I even went to work without my wig- proudly sporting my fluffy regrowth (just over a cm now and very fair). If i’m honest I’ve been burying my head in the sand about the Mx. I don’t let myself think about it too much and am distracting myself with work, parties, lunches and dinners. I haven’t even packed my bag for the hospital. No time for that today though as I’m meeting a friend for lunch and then another one for dinner.
Had loads of appointments at the hospital, had another herceptin, pre op asst, another blood test as pre op one showed low WBC and a genetics app’t as I’m being tested for the gene mutations. Can’t wait for this all to be over with. I know the herceptin will continue for a while but I will be having that at home so it will only be clinic appointments at the hospital.
Al- Ouch, your arm sounds really painful. You had 6 FEC didn’t you. I had 2 and my arm’s still rubbish. I’ve seen a pysio about mine and I have to be careful with it, the same way that you should if you have lymph nodes out. So that’s both arms for me that will be knackered. The physio told me it will take up to 2 years (they never told me that before chemo) for my arm to heal as there are adhesions in the veins. Hindsight is a marvellous thing, but I wish I had a portacath fitted before chemo. They offered me one half way through but the damage was already done.
Blimey, I didn’t know radio made you tired. I haven’t even began to think about that yet. Good luck to everyone who’s starting and those in the middle of it. I hope the tiredness lifts for you soon. We need to get you out of the radio starting blocks Lizzy and I’ll follow behind in a few months.
Thank you for your good wishes for Monday and sorry I haven’t replied to you all individually. Lots of love Lisa xxxx
Hi all, been a bit quiet as I am STILL waiting to start these bloody rads and it is stressing me out as I have to be in the UK before school starts! So now I am thinking about starting them in the UK… I wonder how long a gap you can have between chemo end and rads start? Any one have any ideas?
Lisa I have pm’d you… I wish you all the best for your op on Monday… and new start for you without the lump…yippeee. I know you are scared honey but have courage, you have done so well so far.
love to all, Lizzy xxxx
Lisa lots of good wishes for tomorrow, hope everything goes well for you. Lizzy, I will have had a 5 week wait to start my rads after chemo, due to wonting to go see my son at his graduation. My oncologist seems fine with that wait, he has put me on Letrozole for 5 years, just hope the side effects are not bad.Does anyone know how long before hair starts to grow back? Nothing is happening yet, but only 4 weeks since last fec.Raining like mad here, makes my mood worse:( Lesley xx
Hi Lisa,
Great to meet you at the Forum. Hope you’ve had a lovely weekend ad all the best for tomorrow.
X
lesley, my hair started to grow back not long after 1st tax (having had 4 x fec previously)… so hopefully yours should start soon!! xxx
Hi all.
Lesley - my hair started growing back before i’d finished chemo. Its still very fluffy but is getting slightly darker so there is hope that it isn’t going to come back grey!
Lizzy - I think some people have quite a long gap between chemo and rads (even if they haven’t got surgery in the middle). Sometimes waiting lists can be quite long. So it might be ok. When did you finish chemo and when are you arriving in the UK? I guess you’d need to get on the waiting list over here soon if that’s what you’re going to do. Hope you get it sorted ok. It is stressful enough without having to wonder where you’re going to get treatment.
Good luck for tomorrow Lisa. Keep us posted on how you get on so we know you’re doing ok.
Al xx
Hello hello hello!!!
Wow look at Lizzy with all that hair going on!
Well have finished my normal rads and start 5 boosters tomorrow. Would love to be telling you all that the tiredness has worn off but i would be fibbing! I could sleep on a washing line! Am very red now and just took a peek at my nipple (as you do!) and its cracking…oh the joys!
On a good note i had my LGFB thing yesterday it was really lovely and oh my the goody bag is to die for!!! Loads of stuff that i would never consider buying for myself like chanel mascara and clinique lip liner and eye concealer…oh the list goes on!
I hope all went well for you yesterday Lisa and you are comfortable today.
Must go am supposed to be finding a castle to stay in on one of the nights we are in Scotland. (my OH has delusions of grandeur!)
Lots of love to you all
Sal xx
Hi everyone. Lisa hope you making a good recovery after your op. Lizzy, I would agree with Al, I would ring the UK hospital and see what they say, but I would imagine you would need referral/notes etc from your Spanish hospital/oncologist so it may be better to push your hospital there so that you have that continuity. Good to see your hair growing, its amazing how much it has grown. I’ve still got a bit of my own but very straggly and coming out everyday but I am sure I can feel the new stuff coming through. Sal good luck with looking for a castle. Tiredness has worn off quite a bit now thank goodness. Got my radiotherapy planning next week and already been warned about tiredness. Surely it can’t be worse than chemo and feel I have had my fair share!! Everyone says how tired it makes you. Oh joys… Five weeks of rads and commuting not sure how that is going to work. Need to pick up Arimidex in couple of weeks and these come with SEs too. Anyone else on these? I think most of you having Herceptin. Love to all. Adi x
Good Afternoon All,
Thanks for all your good wishes- I am doing fine after my op! It was a very strange few weeks leading up to it, it was almost like I had my fingers in my ears, singing ‘la la la’ but I was better prepared than I thought. I had a good look at what they had done as soon as I came round in the recovery room. I came home to my mums yesterday and am being spoiled. I’m a bit sore and swollen but that’s to be expected. The surgeons have made me a fab looking boob on my good side, really pert. I am so pleased with it.
Lizzy- I’m loving your hair, it looks great! It’s growing nice and evenly isn’t it? I’m still obsessing about mine. My mum gave me a lovely head massage yesterday (see I told you I was being spoiled).
Adi- Glad to hear that the tiredness is wearing off for you. Re you planning to work when you’re having radio? I’m not sure what hormone treatment I’ll be having. I’ve got an appy with my onc mid august and I think I’ll be starting on them at that point.
Sal- Booking another holiday? You go girl. Hope you’ve found a nice castle to stay in. Woo Hoo, only another to go, nearly there. The LGFB goodies are great aren’t they? I even got a bottle of perfume with mine. Lizzy- that’s one thing you must do when you’re back in the UK; book a LGFB workshop, it’s a lovely treat!
Al- How you getting on with your radio? Hope you’re managing to fit in some lunches. How is your arm, is it feeling any better?
Lesley- Have you had your son’s graduation yet? Sorry, I’m a bit lost on the timeline having not posted for a few weeks. My hair started to come back after chemo no. 5. I’m using a vitamin supplement that I got ok’d by my Onc, it’s called perfectil (as well as lush soap bar ‘New’ and a caffeine hair tonic). I think the hair re growth is different for us all.
Helel= How are you doing with your rads? Have you got everything booked for your holiday?
SandyToes- Was great to meet ou too at the forum, thanks for the good wishes. How are you getting on?
Lots of love and positive vibes to everyone
Lisa xxxxx
Good Afternoon All,
Thanks for all your good wishes- I am doing fine after my op! It was a very strange few weeks leading up to it, it was almost like I had my fingers in my ears, singing ‘la la la’ but I was better prepared than I thought. I had a good look at what they had done as soon as I came round in the recovery room. I came home to my mums yesterday and am being spoiled. I’m a bit sore and swollen but that’s to be expected. The surgeons have made me a fab looking boob on my good side, really pert. I am so pleased with it.
Lizzy- I’m loving your hair, it looks great! It’s growing nice and evenly isn’t it? I’m still obsessing about mine. My mum gave me a lovely head massage yesterday (see I told you I was being spoiled).
Adi- Glad to hear that the tiredness is wearing off for you. Re you planning to work when you’re having radio? I’m not sure what hormone treatment I’ll be having. I’ve got an appy with my onc mid august and I think I’ll be starting on them at that point.
Sal- Booking another holiday? You go girl. Hope you’ve found a nice castle to stay in. Woo Hoo, only another to go, nearly there. The LGFB goodies are great aren’t they? I even got a bottle of perfume with mine. Lizzy- that’s one thing you must do when you’re back in the UK; book a LGFB workshop, it’s a lovely treat!
Al- How you getting on with your radio? Hope you’re managing to fit in some lunches. How is your arm, is it feeling any better?
Lesley- Have you had your son’s graduation yet? Sorry, I’m a bit lost on the timeline having not posted for a few weeks. My hair started to come back after chemo no. 5. I’m using a vitamin supplement that I got ok’d by my Onc, it’s called perfectil (as well as lush soap bar ‘New’ and a caffeine hair tonic). I think the hair re growth is different for us all.
Helel= How are you doing with your rads? Have you got everything booked for your holiday?
SandyToes- Was great to meet ou too at the forum, thanks for the good wishes. How are you getting on?
Lots of love and positive vibes to everyone
Lisa xxxxx
Waaah. Just lost a really long post. Bah. Can’t face typing it all again (nor remember what I wrote!).
Succinct version:
Lisa - glad you’re doing well after the op. Enjoy your new pert boob! My vein is slowly getting better, how about yours? I’m still getting physio on it, as it still is too tight to straighten, but its getting there.
Sal - hope the holiday planning is going well, did you find a castle? We’ve booked our holiday to Tuscany for September. Can’t wait.
adi - glad your tiredness is going and good luck with rads planning.
Lizzy - liking the hair growth. I have less, but its starting to get a bit darker so hopefully the fuzz will turn to hair soon!
I’ve had 16 rads, so have 4 normal ones left, then an ultrasound to mark up the area for booster rads, then get 5 boosters. So will be finished exactly two weeks today. Phew. Still really knackered, but am managing to fit in some lunching. I just have to follow the lunching with an afternoon nap!
Right, best send this before it disappears again. Off for a nap now.
Al xx