Well done Lol!
Mandy p - Today I had radiotherapy number 8. (9 left!). The long term side effects from radiotherapy include chronic cough, brittle ribs etc. These come about because as you breathe, the beams become necessarily distorted.
There is currently a trial going on at the Q E hospital where by you are trained to hold your breath. You are attached to a facemask and saturated with oxygen. Co2levels are reduced to enable the breath to be held. The theory behind this is that if you are completely still and do not breathe then the beams will not distort.
I agreed to be part of the trial. For me it won’t make a difference to my radiotherapy but it may help others in the future. Yesterday -my first attempt I held my breath for 1 min 50 secs. Today 4 mins 48 secs! It’s very relaxing - if a little alien!
Lolly that's great , I too found another lump but it was fatty tissue so doubt I'll have a scan for that x
did the ones who dyed there hair do a sensitivity test , I've been asked on a family meal on sun and a meal with friends on mon and the grey coming through , not at hairdressers for another 2 wk , why can't we dye our hair anyway , I can't find any concrete evidence as to why not , it's all wishy washy , but I feel 90 with the greys coming through
sorry I can't make the meet , it's my birthday wk and I'm off to York with the girls , it's hard for me to get away with finding babysitters , but hope you all have a great time xxx
i went to my last meeting with Oncolgist and she was very pleased with me so i have now been discharged from her care and back to the surgeon, and Breast Cancer Nurses if i need them, feeling really happy today, its as though i have been given my life back and all i have to do now is live it, i have got to go for another ultra sound scan in the future as i found a lump about 2 month ago and they want to just check it to give me peice of mind its just a cyst. apart from that all is well.
sending luv n hugs to you all x
Lislouw-My head has been tender at time too. I think in my case it has been sunburn-scalp was purple anyway due to bad dye job so just assuming sunburn!
Cressida-didn't realise Glasgow trains go to Mk. Sadly back to work on 12th August. Sister will also be over from Australia at that time. Hopeful that there will be another opportunity to meet up at some point.
Lisalou - my scalp is really sore. Especially where it is wavy and the hair seems to be pulling in different directions.
Hi to all...... lots of love and all the pictures look fab.
I'll look into trains to MK from Hull or Doncaster as would love to meet up......
Just out of interest does anyone keep having a tender scalp , twice now it feels like it's sunburnt but no redness and not really been in sun as cant due to not being able to put sun cream on rads bit , didnt know if it just was the new hair growing through , it feels like when our hair shed just after the dreaded chemo , yikes!!! Xxx
Sorry Maire, Glasgow trains do go direct to MK, but completely understand. I thought you might be off till September? I just thought I would propose something before we all drifted off. How many Herceptin left? Time for a blood transfusion?
Have a good meet up folks. Just a bit too far for me.......and I'll be back at work after the summer holidays then.
Bit jealous really.
Update on hair-have now done another naturtint. Not purple this time and worked quite well really however hair is growing in quite springy (not chemo curls just my hair I suppose)-the words 'burst couch' spring to mind. Just picture Jim carrey as The Riddler and you'll get the idea.
Another blood test tomorrow. Blinking wbc is low and red is dropping. Hoping it's just the Herceptin-getting dose number 10 on Friday!
Hi Lisalouw. Yes would definitely recommend Revitalash. My lashes went very patchy after last chemo and the Revitalash brought them back really really quickly. Always had fairly long eyelashes but this stuff has made them longer than before chemo. Bit pricey though. However I started using it 17 weeks ago and I'm still using the same container. Know what you mean about the cold capped hair regrowth. Mine's growing really thickly now but the new growth insists on poking through the old stuff and I keep having to damp it to make it lay down. Much better than no hair though. Love your photo - you look great.
Lolly your hair looks fab. Take the plunge and dye it if you don't like the grey, but I think you look good and it's great you've got hair to brush again QD. Take care everyone.
hi cress, i can do a week day but i work till 4pm now as nearly back to work full time, not sure what time you are thinking of, i can do the weekending the 17th if you go for that date too.
so looking forward to meet you allwell the four we have so far anywy lol x
Hello ladies , is it just QD to finish rads now then we all done , cress I hope you go on ok at hospital , border , it must be so nice to see you again in the mirror, I was thinking of trying the eye lash stuff , do you recommend it , mine are patchy at mo , lolly you look fantastic , I should put a pic of me on when I work out how to , I've now finished my rads with instruction that the skin can peak a wk after so to keep up with the cream and keep out of sun , so I'm still very pale , using steroid cream on my nipple it's abit like rudolfs nose at moment ! Breast pads in bra work a treat though and only washing with e45 wash ,hair growing fluffy so I've got long bits and fluffy bits due to cold cap but it's so better than no bits at all which I'm very grateful , not been wearing wig/hat , no way in this weather , I've bought some funky head bands which stop me looking like a boy and I'm going out for a meal on mon with the girls and a family dinner on sun and will be first time alot of people will have seen me with short hair, I had very long hair before so I just want to get it over with , I'm just waiting for an appt with onc now , love to everyone xxx
Shall we try and agree a date in August? If we can do a weekday I suggest Thursday 29th. We could meet in the afternoon, give those working chance to get there, and then stay for a meal somewhere? That way it won't be too late for QD to get back to Brum. So far it's just 4 of us. At least that makes it easy to book a table. I can't do Sat 31st, so if it is a weekend we want then the previous weekend is bank hol so unlikely to be good and the next 2 weekends I will be on hols (Yey). Only weekend I can do in Aug would be 17th/18th. That's quite soon and may clash with QD's rads. Help!
hi i must get on here more often trying to read 38 posted and remebering where everyone is, is impossible, so hope all of you that have been feeling cr*P feels better, and for those of you who are good well done.
I have been on a weeks holiday in Brighton for the weekend then onto Hastings and loved every day, was sooooo sunny and warm felt like i was abroad, even had a game of golf, never played in my life but loved it, bet OH wishes i nevert tried it as gona be expensive lol .
I have my last appointment on Thursday with ONC hopefuly that will be it untill my opp on wrists, have heard any thing yet as to when they will be doing them.
take care luv n hugs to you all and looking forward to meeting as many of us that can meet up end of August xx
Maire, my thyroid stimulating hormone levels just keep dropping. It's weird because I have been feeling better whilst they get worse. Anyway - it could mean I need more thyroxine, or it could mean I need less, depends on the cause. Am waiting for choose and book to start working - obvs does not work on Fridays, like most of the NHS. According to BCN it has nothing to with cancer or any of it's evil treatments. However, when I looked up the endocrinology dept of my local hospital I saw that the clinic I need to go to to get my thyroid investigated is run by the breast surgeons. Unless it is an amazing coincidence and the endocrinologists all have the same names as the breast surgeons. Hmmmm. Anyone for a conspiracy theory?
oh Cress - one thing after another. fingers crossed for you. Hope you'll be ok for end of August.
BC- thanks for your post!
Maire - funny!!!! er green no unless you like ther colour! personally i hate it. there is nothing green in my house! its so ironic that the school I work in has a green uniform!!!!!
Son home and in one piece. No i dont think he'l be on the tv - hope not anyway. tbh id rather not know what he got up to!!!!!
Daughter has completed her Silver Duke of Edinburgh (back on crutches now- ligament damage aaargh!)
Apparently radiotherapy can kill cellulitis (it can also cause it) but ive stopped oozing and my boob definitely feels softer so here's hoping!
Cressida-When's your appointment? Have they told you what concerns them about your blood test? Will keep my fingers crossed for you. Hope that parking ticket machine is nice to you!
BC great to read your post. I'm at the tennis ball stage of hair growth. Maybe I should just dye it green!
OMG. I need to go see a specialist. AT THE HOSPITAL. Did I mention how I hate the hospital? And how it sends me a bit (a bit??) mental.
Maybe I have boring hypothyroidism brought on my boring menopause, or maybe the radiotherapy damaged my thyroid gland (the radioation can "scatter" if the machine is not super accurate) or maybe my pituitary gland is broken (why not?). Anyway, the treatment is not the same in each of these cases, so I need to see a specialist.
I know swearing is illegal on here - so feck, feck, feck, feckity feck.
Surprise, surprise, my blod test is not "normal". Now I am waiting for the GP to call me to tell me what is wrong with it.
QD - if they are happily zapping you it must be OK. I would demand the rads nurse sees you to assess what creams/dressings you need. Let's hope she is less useless than Cybele's rads nurse. Try not to squirt puss on any teenage boys. Most of them don't handle that sort of thing well, your son is an exception. Is he still in Kavos? Will he be on TV?
Well done BC on finding yourself again. I am not going to look for old me, I will focus on bashing new me into shape.
Coyote - if your customers don't care, then no-one will. Throw out wiggy. Get a hat though, for when you are not buried in the cells.
I am more than happy to meet QD and Coyote, but, anyone else? Looks like it will be at the end of August so QD can finish beng zapped.
Evening everyone. Haven't been on here for a while and have just been reading all the posts of how you are all doing. Congrats to all who have had good news and/or are doing well and hugs to those of you who are not feeling so good. Cybele I do hope the cough is getting under control by now and that you are feeling stronger. I had a bit of a revelation today. Just the usual sort of weekday. Did the housework, watered the garden, did some baking and then walked in the woods with my three dogs thinking what a beautiful day it was. Got home and went upstairs to change and glanced in the mirror. I suddenly realised that the face that looked back at me was in fact "me", the person I was before breast cancer mangled my existence. I stood in front of the mirror in shorts and suntop, brown as a berry, and saw eyebrows, long eyelashes (courtesy of Revitalash) and a bobbed blonde head of hair not unlike that which I had before this all started. I realised that I no longer had sore eyes and my mouth was no longer dry and my energy levels had returned to normal. I suddenly realised that in fact I felt pretty good. I've whined about sore eyes and awful dry mouth for months now as well as the mangey hair and they've gradually returned to normal and I never even noticed. Miracles do happen ladies and I hope everyone will feel like this soon. Maybe it's the weather but today I feel so good (and lucky) to be alive. Love and hugs to everyone. B
Cybele, lol its ment to be Coyotegirl after one of our previous horses who had a bit of attitude that i hoped i might emulate, but i didnt realise there was a limit on number of letters! her name was actually Coyote Ugly after the film( not named by us) but she was lovely.
i am due at work at 7.00 tomorrow and i think after heat of last 2 days i am going to dispense woth wigs etc and everyone will just have to deal with lack of hair....its just too hot. collegues will be fine not sure about our "customers" though....I work in a police custody suit! but hey, they cant callme anythong worse than they normally do can they?.. ........
Gawd, just going to the hospital yesterday sent me a bit mental. Feel better today. Glad it amused you QD, but sorry about the delay - cellulitis - eek - take the abs. Also glad you had a good holiday Maire.
Time for another lunch date Lolly and Coyoti? This time we could do Milton Keynes beach, then more people might be able to make it. Only about 1 hour from Brum, QD.
Not exactly a christmas party, but good trains and roads and lots of shops and restaurants. Depending on who wants to come we could do a week day cos it would be quieter, but could do weekend if people are working (what is that?). What do you all thnk? Anyone up for it?
oh Cress - you do make me laugh! the car park machine obviuosly thought better of charging you!
Cybele- my kitchen cupboards are at your disposal!
Maire - glad you enjoyed the hol!
Lisalouw - ta for the hair mascara tip
Im supposed to be starting rads tomorrow but its been postponed because I have an infection (on antibiortics - yuk), had to have seroma drained (again) and a "touch of cellulitis"!!! darn it! x
And hypothyroidism causes it too. Maybe I should get off google. Whichever is causing it, both are made worse by sun. There does not appear to be any treatment apart from hormones. Even more hilariously, hypothyroidism can make your hair fall out. Lets hope my tests are good. Desperately trying to look on the bright side - the hospital car park machine insisted on letting me park for free while I had my blood test. Maybe it could see I was hot and itchy and in danger of kicking it.
No toxifen for me Maire. Could be the heat, but it comes on in the evening. According to NHS choices -
Itching is also a common symptom of the menopause, which is where a woman’s periods stop, at around 52 years of age, as a result of hormonal changes. Changes in the levels of hormones, such as oestrogen, that occur during the menopause are thought to be responsible for the itching.
Thanks for all your good wishes girls.
Cress, maybe itchiness down to increased skin sensitivity after all the treatment? I'm not itching, but am considerably more spotty as a result of flush induced face sweats!
Just returned from holiday in Skye. Just the tonic I needed. Fantastic weather and amazing scenery. Unfortunately managed to get pretty bad sunburn and insect bites so legs swollen up like balloons! Also managed to pile on the pounds despite a very active holiday. Strangely pain in side seems to have dissipated. I can only put it down to a change in Tamoxifen brand. I've read the threads where people find different brands make a difference but was a little cynical about it but it really does seem to make a difference. I've now had 4 packets of the things and both times I had the Relon brand I felt a bit rubbishy then a few days after starting the Wockhart brand I felt better. Weird.
Sorry to hear you're still struggling with your lungs Cybele. I really hope things settle down soon. I think our post chemo/surgery/rads bodies have one helluva lot to cope with and maybe take a bit longer to heal. I have been having long lie ins-usually not surfacing till after 10 a.m. and I am def. feeling better.
Coyotegi-You may be impressed at my managing to sit on the back of a horse for an hour in Skye without falling off. Felt sorry for the poor horse having to plod around with me on his back though! My hair is still a touch purple but think I'm going to have another go at dying it this week, but I know what you mean about splashing out on a bottle of dye for such measly hair quantity. I am now officially Cher-free! I cannot face putting the wig on anymore. It was great in Skye where nobody knows me. Bit more difficult at home but hopefully people will get used to my somewhat brutal new look soon.
Mandy-well done on the race for life. I found it quite an emotional experience but was glad I'd done it.
Sp, delighted to hear your op is over and that your results have been good. Onwards and upwards.
Lisalou-you're almost there. Just a few more sessions to get through. I didn't use any lotions or potions during rads and my skin was fine. Just lucky. Fingers crossed for you.
Cressida- breast recon thingy sounds interesting. Def worth taking your time to consider all the options. My sister is still on painkillers after her breast reconstruction almost a year ago.
Anyway, off to have a look at hair mascara on Amazon!
Is anyone else itchy? I get really itchy when I am tired (which is a lot). Then the itchyness keeps me awake. So I get more tired. Antihistamines don't help and it is worse in this lovely hot weather. Is this another joy of the menopause?
Off to get my thyroid levels checked again. I hate the hospital, but I am not going to let the GP surgery nurse butcher me - have to see the phlebotomy ladies who can get blood from a stone.
Hi ladies , I'm on 15 of 20 rads , my boost wk next wk , not the weather for a red burning chest is it , very tired this wk end and over sensitive , why I'm not sure ?
SP, yeah, fantastic news, you must be over the moon x
cybelle, I do hope your lungs start to calm down , are you on any inhalers too? X
the 3 breakfast thing sounds fantastic
lv to everyone xxx
Still very ropey, just coughing and coughing. GP has given me another week of Dexys. We'll see how it goes.
The Dexys have made me clean out and reorganise every single cupboard in the entire flat now - it's immaculate, which is very pleasing. Had let things slide over last few months of being ill.
Only trouble is Dexy energy is artificial and now I am very very tired. Must STOP and lie down and read this afternoon.
It's so odd being tired and wired at the same time.
Cress, that's interesting about the exercise, especially vis a vis the chemo percentages. Chimes with everything I've read about exercise and diet being the best way t oavoid reoccurrence. keep thinknig about all the oestrogen living in my fat cells... oh well, hopefully will be back in the pool soon.
QD, congrats on anniversary - quite an achievment! Hope you have a lovely time.
Mandy, sorry to hear you are having chest probs too, but glad that x ray all clear. Reassuring. V impressed about race. Well done.
Coyotegi - laughing about head mascara and multiple breakfasts. riding and field clearing sounds v impressive. What does your name mean? I keep wondering.
Sarah - fantastic news. Brilliant xxx Have i already said that in a previous post? Ah well, it bears repeating. My brain's a bit fuzzy.
Cybele - how are you feeling?
Cress - glad you had a constructive day (or should that be reconstructive!!!)
Mandy P - well done on race!
Coyotegi - i use make up remover and then wash hair with baby shampoo - doesnt take long!!!! the 3 breakfast thing (i remember now - the story came from my sister-in-law) was that you had: 1 porrige. 2 fresh fruit 30 mins later 3 toast 30 mins after that. apparently it worked
SP - well done!
Its my wedding anniversary today - 33years! As son is in Kavos and daughter on Duke of Edinburgh expedition the OH and I are going to see "allo allo" and go for a meal without any teenage whinging!!!!!
I have good news to share. I'm officially "in remission" after the 2nd WLE results were cancer free.
My onc says grade 1 cancer in the 1st WLE tissue is likely to be additional to the grade 3 originally biopsied (and spread to the liver & lungs). He's very positive about the indication that the grade 3 was therefore dealt with by the chemo + herceptin. In other words - as there was none left in the breast, less likely to be left anywhere else (last liver/lung CT scans clear). I'm hoping that improves my chances of staying in remission for some time to come.
Cybele, I hope you've had a better day and if you haven't sought more help, please do. It may just be that your poor body's taken so much punishment that it's showing up in a weak area. I'm truly glad not to be doing rads for the moment and really feel for you having to go through all this. Remember how strong you felt when you started to recover after the chemo? You'll get back there again.
Cressida, my WLE surgeon was the new onco-plastic variety and what he achieved asthetically given how much tissue he took out is amazing.