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Starting Rads in March -please join in!

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Re: Starting Rads in March -please join in!

Classy Lady - Most of the people waiting seem to be old men or on stretchers or gurneys or whatever they are called.And they all look miserable.
And my French is not good enough to start a conversation!
I'm normally seen fairly promptly, so by the time i sit down, check the time, fire up my kindle its time to go in.
Birdiebates - hope all goes well with your sensitive skin.
I am being very good and just using the almond oil as directed. I'm pink but i'm not sore.
I'm more worried about getting my arm burnt as I no longer have any lymph nodes under my right arm pit.Not used to using suntan lotion..normally garden in t shirt and shorts!
Had an arm massage again today....very pleasant ...just wish it was a nice young man doing it rather then the old mole man. (He has very poor sight)
Hugs to all
Mary M

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hi Mx, I wish i had time to speak to people waiting, but i never wait! Every time i arrive, they are ready for me, hope it lasts as i'm only on number 2 (of 29!) Despite being told not to, i am using aloe vera gel. My appointments are all late afternoons, i use it afterwards and shower it off the next morning so i can't see the harm, but i can feel the benefit, it is beautifully cool, i think i may even put it in the fridge. Hope the others are all getting on ok, i must admit i'm feeling a bit daunted by it all - treatment ends on the 16th of May, seems an awful long way off...

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Re: Starting Rads in March -please join in!

Hi Mary M
Just signed in tonight and yours the first comment opened! Just finished my radiotherapy last week. Best advice - speak to those in the waiting room. We ended up with quite a wee community; various diagnosis but common cause!
I must admit I developed a very unhealthy relationship with the first linear accelerator. Thought it might help if I called it a name - Kevin - I hate Kevin! The weariness/tiredness you may have during treatment goes quite quickly. I managed to cut the grass yesterday.
I have burn marks under breast and arm after booster treatment and have been stuffing a micorfibre cloth between skin and bra to cushion. Just hope I don't get run over! Slapping on cream/gel any time I get the chance.
I got double strength aloe vera gel from health shop (no alcohol, parabens, fragrance) which really cools area.
Hope all goes well. Stay positive
Mx

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Have a lovely holiday Modurham!
13th today - my appointment was at 5.40 -there were loads of people waiting - they must run that machine for about 12 hours a day!
Throat not getting any worse but I'm taking ages and ages to eat meals....have to chew and chew and chew......big lumps hurt going down.
The weather has been so warm I'm worried about sun exposure ....have put away all my winter woolies and got out all my t shirts...but wearing the long sleeved ones to garden.
So glad I'm not having rads in July/August!!!
hugs to all
Mary M

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Re: Starting Rads in March -please join in!

Hi I start Rads on thurs 28th,having 15 sessions.I have very sensitive skin,had allergies to all dressings after my op,so dreading what I will look like after my treatment.Anyone got any tips?

Moya
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Re: Starting Rads in March -please join in!

I know how you feel Gill - I had my second today and it seems like a long way to go. I am feeling pink and hot already, and am anxious as the oncologist said she wasn't sure my skin would hold out.

Moya xx

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Your last, my first! Bet you're feeling relieved to have got through it. I really didn't like it, hdt a bit of a panic at the thought of doing it again 25 times, but i've pulled myself together now and am lying on the settee pretending to be tired so OH will bring me an apple!
Nice to see someone get through the rads with few SE, gives me some hope.
Hope the others are ok and are having the same glorious weather as here.

Gill

modurham
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Re: Starting Rads in March -please join in!

Well last session today. Feeling all right, just a bit tiredness sometimes. Been having colourful dreams lately but don't know why - rads or letrozole - who knows. Couple of chill out days ahead and then hopefully off to Lanzarote with the family. This was planned ages ago. Have had to re-think wardrobe to enable keeping top covered up. Perhaps I will get brown legs? Looking forward to just chilling out. Then hopefully I can move forward . . . not sure that you will ever put it out of your mind and it is such early days. One other questions can I ever have a long soak in the bath again?
Good luck to those still going through rads (and starting).

Moya
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Re: Starting Rads in March -please join in!

Thanks, ChocDrop. Good luck to you and the April rads ladies.

Moya xx

ChocDrop
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Re: Starting Rads in March -please join in!

Hi Girls

I had my appt with Oncology yesterday and and for planning session in 2 weeks time, and rads should start around 2 weeks after that, so will be after Easter. Taking a bit longer than I anticipate but am actually not stressed out about that aspect (at the moment, anyway).

So, I won't be starting this month after all. Did wonder if it would all get sorted so quickly.

I'll join a 'Radiotherapy in April' thread, presumably, or even may start one.

Have been offered the option of joining the IMPORT HIGH trial and have some questions etc but will start a new post for this

Take care, all you 'March' girls. I do hope all goes well for you all. No doubt will be seeing posts from you under various threads.

Thanks for all your support so far.

Cheers

Moya
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Re: Starting Rads in March -please join in!

Sorry to hear about your sore throat, Mary. Nearly half-way. How is your skin holding out?

Tricia, you need to be careful massaging lymphoedema. There are some simple drainage massage techniques in the MacMillan booklet but I found them hard to decipher. There are also some lymph drainage specific exercises on the Haven website you might like to try.

Off to my first rads session shortly - fingers crossed.

Moya xx

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I saw my Onc today after session number 11.
He asked me if I was having any problems and I said not really, bit tired, bit pink. Then he asked me if I had a sore throat? Well funnilly enough I did...its been gratchy for a couple of days and I was worrying cos its not a cold and I was thinking oh oh whats this?(As you do) and it appears its a side effect as the rads can just get as far as the top of the oesophagus ..and I probably have a sensitive oesophagus anyway as I 'suffer' from acid reflux which can if I dont take ranitidine come up into the throat and make it sore.
So one can have throat soreness towards the end of treatment but I have got mine early. He advised me to keep taking the ranitidene and if it got really sore he could prescribe something....oh the joys!!!
So if anyone gets a sore throat - yes its a side effect!
Tricia - could you massage with Almond Oil? That is what I am advised to use to moisturise my breast so it can't react with the rads if its advised by the oncs here?

Mary M

modurham
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Re: Starting Rads in March -please join in!

Hi Tricia I have travelled from near Durham to Freeman. If you go up the A1 it will be fine. You don't actually go through Newcastle. Even when I had some later appointments on a Thursday and Friday I found the traffic all right. They are normally quite prompt with dealing with your appointments. Today is the first time I have had any real delay and that was outside of their hands. With regard to the bio oil I stopped using it a day or two before rads. I didn't ask but I think it has lavender and things like that in it so seemed wiser to stay clear. I will ask them tomorrow when I might be able to use it again. On the last lap - whooppee! Tomorrow and Monday to go. Skin has held up all right - hope I haven't spoken too soon and tempted fate. I know everyone says the tiredness hits you after you have finished so will look to the posts to see how everyone else is doing. I wonder if you ever stop worrying about bc or wherever it will always hover in the background. Best wishes to everyone else.

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Hi everyone, I have just had my CT appointment at the Freeman Hospital Newcastle and start rads on 28th March - so will just make it before the end of the month! I can sympathise with those of you travelling some distsnce as I have to travel from Durham and am not looking forward to having to go through Newcastle in the rush hour, I am a nervous driver at the best of times!
I was wondering if any of you could give me some advice, I have developed lymphoedema and have been advised by BCN to massage my arm and breast with Biooil until I get an appointment at the LO clinic (that may take some weeks), my query is should I stop using this before I start rads?

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Re: Starting Rads in March -please join in!

oops! posted twice, but i have just got up!

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Re: Starting Rads in March -please join in!

Pierre d'Alun is a sort of rock, looks a bit like a milky crystal. You just have to ask, everybody knows it here. I've got one in the shape of a roll on but it comes in all sizes. Don't get a big one as they take years to wear down. You wet it and then rub under your arm. It has no smell and feels like it couldn't possibly work. You need to keep at it for a few days but it does seem to block the smell of sweaty armpits. It's beeen used by arab women for centuries apparently. Ask the girls at the rads, they'll know about it. However, good news(?) it would appear that after a few sessions, the hair and sweat glands cease to function on the affected arm, so that's 1 problem solved! Have a great day, Gill

http://www.alumstone.com

hope i'm allowed to post a link but it's only for info, not to buy

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Re: Starting Rads in March -please join in!

Pierre d'Alun is a sort of rock, looks a bit like a milky crystal. You just have to ask, everybody knows it here. I've got one in the shape of a roll on but it comes in all sizes. Don't get a big one as they take years to wear down. You wet it and then rub under your arm. It has no smell and feels like it couldn't possibly work. You need to keep at it for a few days but it does seem to block the smell of sweaty armpits. It's beeen used by arab women for centuries apparently. Ask the girls at the rads, they'll know about it. However, good news(?) it would appear that after a few sessions, the hair and sweat glands cease to function on the affected arm, so that's 1 problem solved! Have a great day, Gill

http://www.alumstone.com/

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Re: Starting Rads in March -please join in!

Gill What is Pierre d'alun? Sounds like a stone of some kind?Alun is alum...isnt that made from cows pee?
What should i be looking for?

I'm washing before I go with Savon de Marseille but i still smell stinky when i get on the meat slab.....
Supposedly I see the doctor tomorrow .. I guess because i've been going for two weeks. Going to ask him if I can book my flights to england so i get to watch my daughter running in the London marathon.
Or maybe he's going to prescribe my femara...can't wait.

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I am having rads in Ireland, am in my fourth week, just 9 sessions to go. Don't like it much but getting used to it, skin behaving really well. Not using deodrant or being able to shave is a pain in the ass, but I find Simple soap keeps the stench at bay (or at least no one has accused me of being smelly, maybe they're just being nice) Is it true you can't shave for a few weeks after radio ends?
I am coming to the end of my journey, have stopped wearing the wig and all surgery behind me. Once radio is finished, that'll be it hopefully. Incidentally Lucy34, you look fab in your profile pic, I felt I looked horrendous without hair although everyone said I didn't and even though my hair is back, it's wild and curly and I don't know what to do with it!!
Girls this website is a god-send, have had some great advice. thanks. x

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Hi Mary, Is it a french thing? I'm having 27 sessions, hope you're right, and the doses are weaker! I have been told I can use pierre d'alun on my soon to be zapped armpit. You can get it at the chemists or the health food shop. It won't stop you sweating but it will stop the smell. I thought it wasn't working at first but it builds up on your skin and now i find it pretty good. Just watching Toulouse on the tv, hope it ends ok.

love, G

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Noticed that some ladies here are having 15 sessions, some 20, I am having 25 which probabaly means that they are gentler?
Breast is very pink after 9 sessions and i do feel tired normally a couple of hours after the session but then I pick up and as long as I'm not expected to do anything much can stay up reading, browsing, listening to the radio, watching TV, sewing, knitting until midnight.
Couldnt possibly go to work, luckily I am retired so don't have to!!!
One of the things I find embarrassing about rads is that because I can't use deodorant under right arm pit that by the time I get to Montauban (min 1 hour drive) I am sweaty and smelly....anyone any advice on this?
Hugs to you Audrey ...all over soon.

Mary M

Lulu34
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Hoping it gets better soon Audrey.

I now have a little bit of pinkness around the clavicle... 12 down 8 to go.

Libby your on the wrong thread sweetie there should be chemo threads depending on what month your getting chemo and if there isn't one you can start a new thread... Fec doesn't tend to affect your nail but tax can sometimes do it... The effects can vary from ridges to falling off.... Hopefully you will find more info in the chemo threads.

Lulu

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Lulu/Moya

I won't see the radiotherapy specialist nurse until tomorrow. She thought it was an infection when she examined me yesterday and decided to give me antibiotics because she didn't want it to get worse. She wasn't worried about the red skin at the bottom of my boob and on my midrif because it is where the skin touches together and the redness is what they expect/are used to seeing after radiotherapy. What they don't expect to see is the redness that I have around my nipple and across the breast and the redness is tracking up (that's what they called it). The nurse was worried about it. She didn't actually say it was caused by the radiotherapy I just assumed it was.

A

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Hi Mary, thought about you when watching the news, just dreadful, hope they catch him before he does it again. As you have no doubt seen, I am still waiting to start, but I've decided to go with the flow and not get annoyed about it. Making the most of the weather while it lasts. You don't mention any side effects so I assume all is well - hope it stays like that! Love to all, Gill

libby12
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Re: Starting Rads in March -please join in!

I am starting in April and am Having 3 fec and 3 taxotere, I have just read that it can effect your nails Any advice on this one!!! Only just coping with the fact I may loose my hair, although I am trying the cold cap. Love to all Elainex

Moya
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Re: Starting Rads in March -please join in!

Welcome ChocDrop - this is quite a quiet thread, hopefully because the March rads ladies are not having too many problems. I am starting on Friday and am feeling a bit nervous.

Audrey - hope your infection (was it an infection?) has cleared up. I had cellulitis after surgery and it was horrible.

Moya xx

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To Montauban again today for my 9th rads session....clinic is on the edge of town just off the motorway so no sign of the alleged massive police presence because of the murder of the soldiers in town last week. Missed doing the 1 minute silence for the children murdered in Toulouse as we were back on the motorway at 11am.
Weird having this major story on our doorstep...its a big political issue here right now.

Mary M

Lulu34
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Re: Starting Rads in March -please join in!

Audrey sorry to hear you have an infection hope the ABs clear it up... Do they think it's been caused by the rads?

I'm now 11 down and 9 to go and my skin still look stotally normal and im still not using any cream per our units protocols.

JCJ... It's not just the physical recovery but the emotional one too... Yes you may well be physically able to do your job but you have been through so much and are going to be going through even more you probably want to conserve your energy and get yourself fit and fully recovered from the op before considering going back to work.... Things like getting bumped or catching an infection off one of the kids before starting more treatment could knock things back a while...very often teachers and nurses are recommended to be off until fully recovered.... Much of your time you will feel ok... But feeling ok is not the same as being on top form.

I felt guilty about letting colleagues down and not working but I know some day my head is just mince... Some times it's not but a lot of the time it is... My energy is usually fine while I'm at home sitting on my bum but if I was up haring around I'd be knackered. Some time I just need to sleep in the middle of the day and it's hard to do that at work....

But some people do go back to work as they feel fit and well or because of financial reasons however I would suggest that if you are questioning whether you can work then that probably means you really can't.

Good luck

ChocDrop
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Re: Starting Rads in March -please join in!

Hi girls

May I join you all, please?

I've just got appt to see Oncologist on Thursday, 22nd, re radiotherapy. I had WLE and SLNBs 20 Feb, don't need chemo but for 15 sessions Rads, plus boost (to cover unavoidable skimpy margin).

So, obvioulsy don't know when starting Rads but hopefully soon, going on well into April. It seems there are a few of you starting Rads about now/next week.

I can't say I'm looking forward to it but, like many, will feel better getting it underway. The waiting for something to happen is frustrating in many ways.

Cheers

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Hello All

Had my 13th rad today-2 to go. Had to see the nurse and she thinks I have an infection in my boob so has given me antibiotics. Also the skin under my boob is very red so I have been given dressings to keep it dry and not to use cream there. Also had bloods taken.

Love to all
A xx

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Hi Hedonist, oh the waiting, it's so hard. I had the op on the 10th of feb, and start rads today BUT have just been told the machine will be off for the rest of the week - aaaaagh!!! It seems never ending, especially as I am starting to feel much better after the op and really feel I could work. So that's a bit of guilt to add to the mix of emotions. Oh well, at least the dogs are getting lots of exercise! BC does take over your life however you try to avoid it, there is always an appointment or test to worry about. There hasn't been a day since my DX that I haven't thought about it and I long for the day that I don't. By the way, I haven't started hormone treatment either and have been told I will start after the rads, however I feel that I need to discuss the issue a lot more as to exactly which treatment I have. There are several different types of treatment and I am not going to blindly take tamoxifen without looking at the alternatives. At the moment I'm trying to find a Gynaecologist willing to give me an appointment in less than 6 months time!

love to all, Gill

ps JCJ just seen your post, join the club! We do similar work and I made the decision not to work to avoid missing days. I don't regret it but I'm so bored now that I feel better. Enjoy your holiday, you'll probably start rads after I imagine. If it's chemo there's no way you should go back, and personally I don't think work is a priority with rads either. Imagine the organising it will require, don't forget you have to go every day! Gotta go, my first appointment is in 30 mins and I'm now late, not good for the first!

JCJ
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My planning appointment with oncologist is on Wed. I had WLE and SNB on 22nd Feb. Not been allowed back to work (HLTA in a school - covering classes on my own) as I've had seroma needing to be drained once or twice a week. Getting fed up at home, but don't know whether to go back or wait until rads over(and chemo if they say I need that too!)Feel guilty not being at work as not really ill, just uncomfortable - (feels like a cricket ball in left boob!)- but don't want to mess school about going back and having to leave again as that will cost them more in supply cover. The school holiday starts after next week (30th) too and we have a cottage booked for a week, which the doctors at the start of all this told me NOT to cancel! Worrying about whether to work or not is almost worse than the worry about the treatment! OH badly breaking his leg 5 weeks ago hasn't helped either! Comments/advice welcome!

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Thanks Mary M - that's really helpful. I try so hard not to be totally obsessed with it all - some days thats successful and BC isn't the first thing I think about in the morning. Today the sun is shining and I am full of the joys of spring. Will let you all know how I get on on Wednesday and if I float over til April before starting.
Have a wonderful day and cherish those who are close to you.

Hedonist x

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Hedonist,
I had my op (lumpectomy and full axillary clearance)on the 17th Jan and didnt start rads til March 8th - 7 weeks....so don't worry about the time scale ...its horrid having to wait but you'll get there in the end!
Would be great if you can join us on this thread!
Also I havent started my hormone treatment yet altho other ladies on here started before or during rads....they treat us all differently because we are different...
Wednesday is almost here...hang on in there
Mary M

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Hi All,

I was really hoping to start rads in March but still waiting. I had my surgery on 16th Feb - wide local excision, tumour 1.5cm invasive ductal with some lobular. Wide margin achieved (although only 2mm in on place) Sentinel node biopsy clear although some vascular involvement. I have been lead to believe that this all means that I will be having radiotherapy and hormone tabs. I have meeting with oncologist on Wednesday - but it all seems to take so much time. Looks like I have to be patient - or should I be shouting at this point. Any thoughts more than welcome.

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Hi all,

3 zaps down 17 to go !!! I already have a very pink boob so the cream is wonderful when its been in the fridge for a while !!!

All is going well really the travelling is a nightmare along with working at the same time !!! The girls and boys at St Thomas's are wonderful and its all very calming !

I hope everybody is well

xx

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Another variable with the tiredness is the point at which we start rads. I am a month post partial mastectomy,no infection and no chemo before, so ideal conditions really, not everyone is so lucky, but even I am only just recovering from the op, and I find just dealing with it emotionally very tiring. Other ladies come to rads after months of other treatment, and from what I've seen some find it a piece of cake compared to what they have already been through. It really does seem to depend on so many factors so, unfortunately others peoples experiences are just that - other people's. Having said that, I agree that just talking about it to others in the same boat is so so helpful and therapeutic. Hope you are all having a lovely weekend, after a week of sun it's pouring down here!

G

Lucy_BCC
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Re: Starting Rads in March -please join in!

Hi Mizotte and welcome to the BCC forums

In addition to the support and shared experiences here, BCC offer a range of support services which you may also find helpful including our helpline, you can read more here:

http://www.breastcancercare.org.uk/breast-cancer-services

Best wishes
Lucy

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Hello everyone,

I started rads two weeks ago. I found reading the contributions of others in this thread very interesting and useful.

So far, I haven't felt the physical exhaustion described by others. On the other hand I have begun sleeping for eight hours, or more, at night rather than my normal six to seven. (I know I'm lucky to have the freedom to almost always sleep for as long as I want.)

Thanks to everyone who's shared their experiences.

Mizotte

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Angela, tiredness is a pain, it's invisible and not permanent. What happpens, in my experience is that you have a good day and everybody thinks that you're better and can therefore resume shopping, dog walking etc. The next day you can't get out of bed so you think you're being a wimp, and so, unfortunately do some of those around you. I met the mother of one of my pupils whilst out shopping, she has since told several people that I looked fine to her and that if I could manage an afternoon in the shops, I should be managing a class of 30 kids! I shed some tears over that, but my lovely doc gave me a good talking to. She said I should expect to feel c**p and that anytime I didn't should be seen as a bonus and made the most of by doing what I feel like, hence the horse riding mentioned earlier (went back yesterday, 1 whole hour!). One of the big problems with this situation we find ourselves in is other people. If they could just keep their opinions to themselves, however well intentioned, life would be a whole lot simpler. I think we all wish for the same thing as you, normality. It will come sooner or later, but the patience required to wait for it is sometimes the hardest thing to deal with.

love, Gill

kit20
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I am starting rads in march but not until the 26th. I would be grateful to benefit from your experience though. Love K

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Many Thanks Janet for the info re after Radiotherapy. Very helpful. I think when you actually see it in writing that tiredness and fatigue is to be expected one feels justified if that makes sense

Thanks again for all the posts. I appreciate them

Angela

Moya
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Re: Starting Rads in March -please join in!

Hi Mary M

It sounds like massage is part of the treatment program in France. That sounds fabulous to me as I am finding it very difficult to relax and get enough sleep but my BCN said better not to have a massage during active treatment. Funny how practice varies from place to place!

Love
Moya xx

Lakeslover
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Hi Angela,

Popping over from the feb rads thread.

I finished my rads just over 3 weeks ago now and I am slowly getting back to some level of normality. Both my radiologist and onc told me the rads go on working for 2 weeks after the last treatment so expect to carry on feeling tired and lethargic and try to rest during that time.

I started slowly walking further each day I felt I could, now can walk up to 3 miles but only relatively flat ground (I am in the Lake District att the moment!). I do find I still have good and bad days, so have had to learn to listen to my body. I also lost my appetite during rads, and that is coming back slowly (unfortunately didn't lose weight though).

Lynda

Lulu34
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http://www2.breastcancercare.org.uk/sites/default/files/Radiotherapy%20for%20primary%20(early)%20bre...

just checking if this works.... works but scoots off the end of the page sorry.

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Janet

Just to let you knowI have clicked on the link but 'the requested page could not be found'

A

Janet_BCC
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Re: Starting Rads in March -please join in!

Hi Angela

I have attached a link to our publication on Radiotherapy

http://www2.breastcancercare.org.uk/sites/default/files/Radiotherapy%20for%20primary%20(early)%20breast%20cancer.pdf

Page 19 has some information about "After the treatment has finished" which may be helpful.

Very best wishes

Janet
BCC Facilitator

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HI
Ihave never posted before so here goes. I had a lumpectomy in January and have just finished 20 fractions of Radiotherapy. I am so very tired/lethargic and feel so down, just not what I had expected. I have put more than a stone on. I have tried walking and doing some exercise but does nothing for me. So I guess what I am wondering is will i ever get some normality back in my life?

Angela

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6th Rads today......so hot here ....had to protect myself against the sun through the car windscreen on the way down the autoroute..this afternoon I had my first (of 30!!!) massages from the local physio. Funny man ...blind as a bat...took him ages to read my Carte Vitale on his computer and to check my prescription.
But then a quite pleasant arm massage ....i managed to make small talk about the weather ...he doesnt speak a word of english and has quite a strong local accent...
All part of the rich tapestry of life......

Mary M

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Well I managed to get on - for 5 minutes! The stables are having building work done and my horse decided to bolt when she heard to lorry reversing. Not usually a problem but I was so scared of hurting myself that I decided to stop, going back friday when it will be quieter. Anyway, it was nice to be out and chat to some people who had wondered where I had disappeared to. Came back and gave the dogs a good run, I don't know if it's the weather but i'm full of energy, making the most of it before next week. Paying for it this evening, quite achy, but well worth it.