Hi Mel that’s good news- our posts crossed!
Hi All,
My Onc told me the pre-rads scan is NOT diagnostic (different machine, not detailed enough) and can’t see tumours etc. so it might be worth checking with the radiologist and avoid getting in a stew. The day before each of my CT and bone scans I was a nervous wreck all day, then sat in the surgeons office hiding the fact that I had my fingers of both hands crossed for luck! I practically skipped out both times. Anyone who isn’t bothered about waiting for and then getting the results just isn’t normal. Congrats on your clear scan Pauline - best test results ever, aren’t they!
Lynn - I read your bit about a ‘man look’ to my OH, also John, who is also rubbish at finding things and we both had a laugh! He’s got better with the additional practice over the past few months though.
Mel - yes, after the chemo aches and pains seemed to be easing, I got a really bad backache that spread down my legs over a few days. This happened 3 cycles, but not this one. I think I picked up a different virus each time (shivery, cold then cough) just as I was getting over the chemo and my immune system was really low. I think this process really b***ers up our systems! I’ve noticed that insect bites aren’t making me itch at all, and the foot that was making me limp has now swollen up a week after I twisted it and now practically better - it just looks awful!
I’ve plucked my eyebrows too, tiny hairs but still in the wrong place. But really wish I had some eyelashes - I still don’t look like me when I see my reflection. I used something called M2 before I was diagnosed for about 16 weeks and it really worked. Just before I lost them all to chemo I had lashes twice as long & thick than I’d had for a decade or two. As soon as I’m thru cycle 8, I’ll be using it again!
Sleep well Angels,
Ros
Afternnon Angels
For some it must seem quite a while since your last chemo but i feel quiet low today. It’s my next infusion tomorrow of the dreaded Tax/Herceptin. Can’t wait for that platform. The oncologist is on holiday so I don’t get to see anyone until my next on Sept 3rd. Normally for me this is when something goes wrong and I can’t reach the right person.
The ends of my fingers seem to tingle all the time now and if I suddenly get up my legs ache big time just above the knee and upwards to my thighs. I have to stand and wait until the pain wears off which thankfully doesn’t take long but I still worry. Anyone else had these symptoms.
Philomena - Can’t believe Ive fought all my teenage life not to have any hiddeous tatto’s that i would regret when I got older and now I can’t wait to have these. Lifes a barrel aint it. Glad to hear their painless though so thanks for that and it’s great to hear everything is moving on for you now. (I feel like im still stuck in chemoland).
Rozz - Where do you get the M2 from? Would certainly like to try some when chemo is done.
Mel A - Singing party what a good idea. Going to see what my daughter thinks.
Pauline - Great news about your scan. Did you have it done at the same hospital that your treated at. We can pay for our own here too but it’s all done by the same team only we pay for it if it’s not part of our plan. May look into the cost just for peace of mind once surgery is over.
Kim - Hows the OH’s cake coming along. HAPPY BIRTHDAY TO HIM.
MelA - Glad youre ok and havn’t had to go in.
Lynda and Angie - It’s beginning to sink in to me that the paranoia of any ache or pain is going to strike big time after this. On the up side though i should think we will be sorted out very quickly and I for one will be the first knocking on the GP’s door. Surely they can’t blame us can they?
Mel - I had back pain and headaches on Fec so it could be the E drug in the Fec. Now i’m on Tax/Herceptin it’s all gone so has the sickly feeling. Will take a look on the Guardian site. Thanks.
Well thats my time up on the ole keyboard for now off to prepare all for my lips, tum, and bum for tomorrow. (Drugs i Mean). Te He. Luv & Hugs. Sandy. Xxx
sandy I too have the tingle and numb finger ends plus the pain in legs with any movement especially when going up or down stairs, but even just sat down I can feels the aches in my legs, i think its just the chemo.
ive been to see the consultant today regarding my surgery, im booked in for the 3rd September. I’m a bit miffed really, originally I was told I could have reconstruction straight away, but now they’re saying that it will be a full mastectomy due to it being aggressive lobular cancer with removal of all the lymph nodes and that I can’t have any reconstructive surgery till a year to 18 month after. She said if they put the inflatable implant in, could would be effected with the radiotherapy, and could go hard, and that the best option is to have nothing done for a year after. That way the radiotherapy will zap any lingering cancer cells and everything should be fully healed when they do reconstruction, either with belly fat, back fat or implant. I had just got my head round it, that they would do the surgery but I thought at least if theimplant was in I wouldn’t be totally flat, but the thought of the chest going in and the scar for a year is not something I’ve got my head round yet.
I’m feeling a lot better today and my temp is back down 
Sandy I get a real heaviness in my thighs when walking or climbing stairs and they feel a bit like jelly at times. I think its fatigue from the chemo. I just have to do things in short spurts. I need to really build myself back up because a walk around the block wears me out. I’m sure it will wear off in time. I know of one girl who felt like that during chemo and climbed Snowdon 1 year later. If you’re concerned about the pains though it might be worth giving the unit a ring for advice.
Judy it’s so frustrating getting your head around something, then having to do it again. You will get through it. I found losing my boob like losing my hair. A real feeling of loss at first, worry about how my husband would take it and a bit self conscious at first. However, once I knew my husband was ok with it and I got my prosthesis I was fine. No-one can tell. It’s amazing how quickly you adapt. xx
Well, just back from my rads planning and not half as bad as I thought it might have been. Met with head onc to sign my life away then went through to strip to waist, lie in a not too uncomfortable position while two young ladies treated me like Bernie the Bolt (you younger ones won’t know what I’m talking about), then twice through the doughnut - did they get it wrong first time - and finally a nice young man gave me three tattoos. I asked him if he would give me a nose piercing at the same time but he just smiled and said no. Got my first week’s appointments starting on 27th straight after the bank holiday. Radiographer said this would be a walk in the park compared to chemo. Please let her be right.
Hope it hasn’t been too traumatic for you today, Angie, and that you’ve come away feeling reassured. I reckon we’re all going to suffer some degree of paranoia over the coming years. A friend of mine who had a lumpectomy and rads 7 years ago says she still has sleepless nights when it comes round to the annual mammogram. Think she took prozac for quite some time afterwards too but that might have been because of the tamoxifen.
It must be harder for you Angels who are still on the poison while a fair number of us are moving on to rads. Each of us has our own individual treatment plan. We just have to hope that all the oncs have got it spot on.
Sorry to hear your options re reconstuction have been limited to none for now, Judy. Another mental mountain to climb.
Time to walk the dog - part of the new fitness routine. We just about keep pace. He’s 14 1/2 with a heart murmur and arthritis.
Moira xxx
Had a really rough day today, didn’t know where to put myself. Also having new sofas delivered tomorrow so not even got anywhere comfy to sit - so resorted to lying on the bed.
Got my rads planning appointment through for 4th Sept, good to hear from the angels going through this right now.
Right then - off for a bath, paracetamol, senokot, lactulose, ranitidine and difflam - after all that hopefully some sleep!!
Carol xx
Snap! Tingly fingers, aching legs, sometimes backache, wobbly knees. Definitley the tax.
Sandy - the “M2 Beaute” is only available in Harrods in the UK, I got mine online. Unfortunately its very expensive – over £100 but I used it daily for 4 months and still have a lot left – and it works! (unless you have chemo, of course!)
Judy – you were given the same advice as I was, and as OH is a BC researcher he also knows a few breast surgeons too so I got the same advice from several sources. Recons can be done at the same time as the mastectomy, but the rads can affect the skin and cause complications later on. This, and the fact that MX + recon would delay chemo as there’s a longer recovery time, made it an easy decision to delay the recon for me. I can’t pretend that the MX and after effects are a pleasant experience (drains were horrid, lymphedema is an ever present threat and I don’t like looking down and seeing a gap/shadow,) but I know I’d feel a whole lot worse if the tumour was still there! The bras I found are really clever and I can still wear practically everything I wore before; I’m happy to wait until after rads before planning my new bionic boob! I did have a bit of a weep for my lost “Pinky” (the left one is smaller so is “Perky”) but I reconciled myself pretty quickly and as its not noticeable to the outside world it is easy to just carry on and I more or less forget about it now.
Carol – sorry to hear you’re feeling rough – not a good time to be without a sofa! Hope the bath helps & you feel better soon (you will, you know!) not sure about senakot and lactulose tho’ – may be an explosive mix!
Roz xx
Good evening angels, well I thought that at 2 weeks post chemo my chemo brain had now gone… Wrong! I have just popped up to the petrol station and completeted my purchase followed by a very frightening looking youth complete with facial tattoos. Went to get on my car, only to realise it wasnt my car with was this lads, I burst out laughing and fortunetly so did he, asked me if I was ok. Fortunetly the scarf must have been the clue. My car is a big silver PC his a tiny little silver car, brain function nil.
Sandy sorry to here you are still suffering, you will soon be joining us
Judy, sorry they have moved the goal posts for you, but it’s important to get the best results with minimum s/e. your a very strong person and am sure you will soon make sence of it all.
pauline glad you had a good result, thinking I may go for one after Christmas, again to put my mind a rest. People call it paranoia, but I think with all we have been through I think we are all justified in wanting some reassurance.
Moira glad your rads planning went well. They said the dame to me as far as s/e are concerned. I will be glad of that as this last 2 weeks I have found ipretty rough. I can still barely talk, although no sore throat voice will give it a few more days then will go back to GP and ask for a referral.
Caz, hope you have a better day tomorrow.
Roz, Im also up for M2, where do you get it? I’m very jealous of you ladies with eyebrows. Funnily all mine on the left side turee white a couple of years ago when I was in Oz, I now have 3 very black eyebrow there now? There so thick I’m inclined to pluck them out!
I have my echocardiogram on Friday so will find out the full extent of the heart damage, really want to know on one hand and dreading it on the other! I have been put on GTN spray and have had to use it a few times now, which is a bit scary. I’m a typical nurse, find it very easy to explain all these things to my patients, but it’s a whole different thing when they happens to you. To anyone I have missed apologise, I’m now going to tattoo my car registration on my hand to try and prevent any further occurrences xx
hi all
had rads planning, lovely girl explained that the scan is to look where to zap so they miss the right bits and hit the ones that might turn dodgy. got tattoos, it was so comfy i almost fell asleep much to my surprise, i was expecting to be in pain with the mx arm.
They will be ringing me in a couple of weeks to go in, so i’m off back to work tommorow.
hope you are all well
angie xx
Last tax 3 weeks ago, and both fore finger nails starting to detach - whats that about?? Who remembers the remake of The Fly with Jeff Goldblum? Well, thats what I feel like, a horrible fascination watching my body metamorphacise…
Sore numb feet still there too. I had the shooting pains in toes at night during early FEC and Tax.
Philomena, good luck on friday, I hope you get some answers.
Off for an early night, best wishes everyone, on or aff the train xx
ECMF cycle 5 day 19
Hi all,
wow you’ve been busy posting! se’s are reducing a bit for me now, and I’ve got nearly 2 weeks to next infusion so hoping to be feeling better.
Sandy- I’ve got numb fingers and toes too. seems like this is happening to lots of us. hope it goes after, it’s a bit incapacitating when it comes to typing, knitting etc- the fingers not the toes!
Judy- sorry about the delay for your reconstruction. You just get your head round something and it changes! you’ve been so strong about your hair I’m sure you will get through this too.
Moira- glad rads planning went ok- don’t wear that poor dog out!
Carol- hope you feel better today and are reclining in style on your new sofa.
Roz- thanx for telling me about backache, always reasuring to know it’s ‘normal’.
Philomena- You made me laugh about the car. I can’t find the keys to mine let alone the car. Good luck on Friday, hope the news is reassuring.
Fecinora- i have a friend whose toe nail fell off 6 weeks post chemo… does it ever end?
love to everyone else, have a good day, minimal ses, minimal worrying, lots of pampering yourselves! I’m off to meet a friend for coffee and sod the weight I’m having the most extravagent cake I see.
love Mel xxx
Morning Angels
Also had rads planning session yesterdsay, all went well and rads due to start on 27th. Started diet yesterday and 1st power plate session this afternoon!
I too am still quite achy in legs and arms but I’m hoping the power plate will get the muscles moving and help sort that out - added bonus of no exercise on my part
Fecinora - one of my nails looks like it’s coming off - I’ve got a plaster on as it keeps catching on things and is very tender (as are a few other nails) - not sure what to do about it??
Judy - sorry to hear your not getting your recon, can imagine how upsetting that news must have been but sounds like your Onc is doing the best thing for longer term.
Sandy/Philomena - my scan was done at a private hospital as this is who my insurance company deals with. It does give peace of mind and I have had no word yet from Ins about paying any excess albeit I was expecting and happy to pay the £150 excess for peace of mind !
Angie - glad you had a relaxing rads planning session
Hope everyone else is doing well
take care Angels
Love Pauline xx
Last dose spectacle day 5
HI Angels been reading all your posts you keep me going. I’ve had a terrible night why does it always seem so much worse in the middle of the night, when no one else about or awake. I started yesterday thinking I had cracked it got the pain under control only for it all to go to pot. Only thing keeping me going is this is the last time I hope. Hope you are all feeling better than me. Sorry can’t type no more wrists too sore. Lynn x
Docetaxel should have said I think I need new spectacles.lolx
Hi everyone
i have felt really tired since the weekend and have put this down to me doing the 10 minute solutions dvd every morning…but this morning I found my last dose of steroids that should have been taken last Friday!!! so I suspect this is the most likely cause, I popped them after breakfast and I feel fine so far, my arthritic leg is also feeling much better. I have started to use the talika again hoping that my brows and eyelashes will get a growth spurt on
Judy - so sorry you are not getting the immediate recon, but it will give you time to research the best options available for you I am sure that once you get your head around it you will cope with the delay in your usual upbeat way
Angie/Moira/philomenaPauline - glad the rads planning went well, hope mine goes as well on Thursday
I have been on yet another retail therapy trip…my OH claims this is concrete evidence that I am getting back to my normal self…I have no idea what he means…me spend money…never lol
hope you all have a great afternoon
Kim x
hi all
i went back to work today, so far so good, its so nice to be back in the ‘normal’ world. veryone was lovely, i did all my normal jobs, sorted loads of stuff out that didnt get done while ive been off, it was great. i expected to flag and come home early, which i can do if i want, but i didnt need to so i’m well chuffed.
kim - the rads planning was nice, the girls were really good at explaining everything, i was worrying for nothing, hope yours goes well.
Lynn - poor you, that aches and pains is just something else isnt it. i get it in the hip/groin area, what a killer!
pauline - wow, power plate ? is that exercise? not doing any of that yet! good for you.
Mel - you’re a very social lady arent you, off for cakes and coffees, hope you felling better and can taste them all.
Anne - theres no end to it is there, the fingers and toes thing is just the biggest pin, turns you into a wreck, cant get up or down, pick things up and all that. soon be stopping i hope.
Judy - i can understand the disappointment at your surgery, i had no choice, they didnt tell me til after that i could have had immediate recon, but now i’m glad that everything is getting full on treatment first and the added extras will come afterwards when i’m fitter and mentally better as well.
moira - they all told me its a doodle after what chemo does. mine cant start til after 28th, has to be 28 days after chemo, so you’ll be on it before me.
Caz, Rozz, mel-A, sandy - to all you poor luvvies getting s/e’s, hope you feel better soon.
having a bath and early night, ready for work tommorow
angie x
Evening Angels,
I’ve been trying to catch up on all your news, so much been happening. There are so many of us now had our planning meetings and will be starting Rads soon.
Pauline, good news on your scan, was it a CT? I thought the scan at the rads planning would have been more detailed so am going to see if I will be getting another full scan or not. It’s definately a peace of mind thing that we all need and it’s only natural to become more aware of every pain or niggle.
Judy, sorry about your news on the reconstruction but I guess they will do whatever is best for you.
Angie, back at work, i admire you, you go girl!
We had a lovely time in Poland and I even managed to walk a fair bit which was remarkable since the day before I left I couldn’t even pack the case. I rested frequently and managed to sip a beer whilst doing so lol. My taste buds are returning and although still very tired and aching legs getting better. The wedding was excellent but omg so much food they have a zillion courses.
A heads up airport security etc for those planning to get away soon. I was at passport control in Frankfurt when it he guy at the desk spoke to me in German, twice I told him I didn’t understand him then he rudely told me to push back my scarf, I explained I had no hair and lifted it a little he then grunted and waived me on. On the flip side, whilst queuing at security in Gdansk yesterday I was asked to remove my scarf, when I said I had no hair the guy spoke to his colleague and then waived me through no problem.
Congrats to anyone I’ve missed arriving on the platform and good luck to any on the chemo train this week, I’ve lost track now. Sorry for not mentioning everyone but hope all is good, best wishes to all xxxx
Thank you ladies for all your words of wisdom, your right and the doctors know what they’re doing, I’m just gonna have to get my head around the thought of having no boob for at least a year, hopefully it will be worth it in the end.
Todays been a crap day, aches and pains in my legs are making me walk funny. The senekot and lactulose are working far too well. My finger ends are sore and my veins in me hands and arms are sore and painfull, Plus the skins all cracked and peeling off my hands now. Oh and I cant sleep, when I nod off and end up laid down I end up with sick in my mouth and heartburn.
we went down to mu mums this evening to take her supermarket shopping and my dads like, how are you, I tell him in knackered and he’s like why, you’ve done nothing. To say both my mum and dad have both had cancer and chemo and radiotherapy, my dads was 7 year ago, my mums 15, they both have short memories. My dad seems to remember that chemo made him feel full of beans and fit as a fiddle and that radiotherapy was ok, it just made him a bit tired, I’m thinking… I Wish!
I say to my kids, I hope your taking note about how much we run around and look after nana and grandad, my daughters like, you’ve no chance, I’m shoving you in a home and thats it!
Angie, you must be superwoman, going back to work, I don’t know how you do it.
Amber, glad you had a lovely time, that must have been awful in the airport with them wanting to see your head, how awful for you.
kim, there’s nothing better than a bit of retail therapy to cheer a girl up, you go for it.
lynn you poor thing, hope you start feeling better soon.
pauline, the nail thing sounds awful, my finger nails are all misshapen but they’re not falling off. Your putting us to shame excercise and dieting, I wish I had the willpower but at the moment I’m still in sloth mode.
mel, the coffee and cakes is more to my liking, I’m with you on that one, sod the diet, it will wait till tomorrow.
fecinora hope you manage to keep your finger nails, it’s not looking good for the rest of us with both you and Pauline struggling with finger nails, have you mentioned it to chemo unit to see if there’s anything that an be done?
philomena, what are you like, with the car, we really ought to be given tshirts to wear to explain why we are so dizzy, its funny though! Good luck Friday, it’s bad enough going through this without the extra problems your having, hope everything goes ok.
Ros thank you for the words of wisdom, it does help. By it must be nice your OH being a BC researcher, at least they have a lot of the answers or know the people who do.
Carol, how’s the new sofa, hope your feeling better than you were, hopefully your new sofa is lovely and comfy and you are giving it a thorough testing.
Moira, you made me laugh, asking a for a peircing as well as a tattoo, glad it went ok though.
Mel-a I think you’ve hit it on the head, I think so long as OH is ok with how I look after the MX then I will be ok, I’m just not looking forward to seeing it myself and I’m not looking forward to OH seeing the scars either. But there’s nothing I can do. I just wish they’d never mentioned immediate reconstruction then I wouldn’t have been expecting to have it. There’s nothing I can do though so I’m just gonna have to get my head round it.
well I’m gonna try and nod off now, hope you all have a good day tomorrow, take care, … Don’t work too hard Angie
Judy - You really sound like your going through a lot at the moment both with Se’s and like me the impending surgery and the mental scars that are bound to accompany it not to mention being hairless, nailess, Boobless (or part) and for me at least a stone heavier. Truly another scary place to be for us for now eh? When is your last Fec? I too am on senekot, Lanszaprozole, Movicol and injections for the next eight days and expect the inevitable Se’s to start kicking in tomorrow sometime. Yet, ive just read all that back and have to laugh at myself. Im actually doing it. Wow I really do agree with anyone who says how brave we are. How brave we all have been and still are.
Horrible night last night. I can only blame the eight steroids for no sleep. OH worries if I get up and can’t sleep too. So I just lay there in the dark as he’s the one having to work. Take my phone to bed so I can at least do something, but then it makes his alarm speakers buzz so gave that up as a bad job. It’s so hard to have positive thoughts in the middle of the night. Got through it by repeating Platform and Happy Dance next time. YAAAAAAY 
Philomena - Wishing you all the best for Friday sweetie. Re-living your available car lapse is going to help me get to sleep tonight with a smile. xxx
Amber - How did you manage to keep your cool. I would have written cancer underneath my scarf and told him the only drugs I have on me is Docetaxol and Herceptin. Te He.
Lynn - Hows your Doce-Specticals. Must order me some, LOL.
Caz - Hope your sofa is making you feel much better.
Angie - Back to work and a bit of normality. I for one can’t wait too.
Kim - Good luck for Rads tomorrow.
Rozz - M2 is a little expensive but if it works well worth it. May try a test patch on my head too. Lol.
Pauline - Well done for the excersise routines. Hope i can get into a little before surgery.
Mel - Not until the last cycle though - Im with you on the cake for now. LOL
Hope everyone else is good Debra, Fecinora, Mel A, Moira, Lori and anyone Ive missed. Lv & Hugs. Sandy xx