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May 2017 Rads start- Help please!

127 REPLIES 127
suebond88
Member

Re: May 2017 Rads start- Help please!

Morning Jane,

must be a few weeks ahead of you...finished rads beginning of June (15) Had a couple of really sore burns on my collar bone that developed afterwards, and am still a bit sore nipple wise, and swollen, but am doing ok.  Keep 'feeling' 'movement' (sounds like your stabbing pain) inside, which when I mentioned it to my Dr said that it was everything settling down and nothing to worry about.  Am not on Tamoxifen as Post menopausal (59) but am on Letrozole, which did mess me up for a good week or so - thought every bone in my body was aching), but it settled down and am now good with it.

i too have a mammogram and ultrasound booked for October - not looking forward to it, but I suppose needs must, and the staff will be aware of our situations - mine's at my BC Centre, so I'm hopeful they'll be gentle!  Next month is also the anniversary (!) of my diagnosis, so am getting a bit anxious, don't really know why, but it is bringing back all sorts of memories of those awful first few weeks.  

Am getting on with things, and have restarted my Pilates classes - can't do everything and can't weight bare on my hands/arms but it is so good to start again.

i did a Moving Forward Course almost as soon as I finished active treatment and found it very helpful.

i'm told time is a great healer, but sometimes I know, easier said than done!

stay positive - we have no choice really do we.  

SueBxxx

jane888
Member

Re: May 2017 Rads start- Help please!

So how is everyone going after May rads?

i Started on the 11 thMay - 4 boost and 15 to whole breast  - they wanted to increase 15 to 25 due to my big boobies but we compromised and kept 15 but increased the dose of radiation. On day 16/19 my skin broke.Oh my it was awful entire underside of breast blistered and peeled over the next few weeks. Anyways, that's far behind me now. I'm now 9 weeks post rads and happt to say most of my breast is looking great. The side and up under my arm went really dark 2 weeks ago and has stayed dark. I've lost all the hair from under my arm - LOL haven't shaved that arm since day before surgery 4th April. Every so often i see a hair and i meerly touch it and it falls out (no big deal). I am really tired but not sure if thats rads or Tamoxifen (started26th June). I have alot of stabbing like pain in breast - Oncologist says its from surgery.. surgeon says its from Rads.. who knows. Tamoxifen is  doing my head in.. brain fog, joint pain is really bad, headaches and fatigue (not sure rads or tamox)no periods (YAY) but always on edge that i will be caught out.... I've had eyes tested and they are ok. surgeon wants all tests done every 6 months for the next 5 yrs.. Had pap test done (honestly this is only the 2nd 1 i have ever had.. and i'm 46), been almost 2 weeks and i haven't heard anything - am hoping no news is good news -actually just called clinic and they just say to call next week if i haven't heard.. - head is thinking the worste - . i am supposted to have a mammo and ultrasound next months and oh my i am crying already.. if i brush up against anything or if i touch it the wrong way, pain is intense and i don't know how i am going to be able to do it.. anyways.. full bloods next and the list goes on.. Anyways enough for now..

Whats happening with you??

 

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

lynda

 

Well you can start enjoying it from tomorrow xx  Make sure you look after yourself carry on moisturising, drink plenty of fluids and listen to your body it will tell you when it wants you to rest.

 

Helena 🙂  xxx

lynda1955
Member

Re: May 2017 Rads start- Help please!

Thanks Helena, glad to have that bit over. Slightly more sore today but have coped. Will be strange being at home in the middle of the day, today did not notice since was in GPS getting a fit note for work. 

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

capelmum52

 

I think you finished your rads today, so I am ringing the bells for you today

 

Helena xxxxx

 

bell.jpg

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

sean

 

Isnt it just, I really loved having my life back again and doing what I wanted when I wanted, even if that was just sitting at home.

 

Make sure you look after yourself for the next two weeks as you will still be feeling the effects of the rads, moisturise well, keep your fluid intake up and be kind to yourself.

 

Congrats again on the end of active treatment

 

Helena xxxx

sean07
Member

Re: May 2017 Rads start- Help please!

Thank you ladybowler yes I finished rads yesterday so nice waking up this morning knowing my day was my own xx

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Sean07

 

I do believe that you have finished your rads today, congratulations and enjoy not having to do that journey every day.  Ringing the bells for you as well.

 

bell.jpg

 

Helena xxx

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Lynda1955

 

I am not sure whether you have posted on the June thread now, but I wanted to say congratulations on finishing your rads today and I am ringing the bells for you.  Enjoy not having to do the journey every day and the end of active treatment.

 

bell.jpg

 

Helena xxx

 

 

suebond88
Member

Re: May 2017 Rads start- Help please!

All Done for me too👍

Although I did leave feeling really emotional.  It was a memorable treatment session too - a fly landed on my left boob while the machine was active!!  Of course I moved, the machine stopped and a technician came in to realign me!  Apparently I wasn't the only patient the beastie had taken a fancy to and so far, they had been unable to catch it!

managed to get home before the tears started - tears of relief combined with anxiety I think.  Will have a follow up call from the radio dept in about 2 weeks to see how my skin is (sore, spotty and itchy) and an appointment with my oncologist in about 6 weeks to discuss follow ups etc.  Meanwhile we're off to Spain next week for a well earned break 🍾🥂😍

congratulations Jo, and treat yourself to some new, fabulous bras as soon as you can xx.

we are all amazing.

sueBxxx

 

atomicjojo
Member

Re: May 2017 Rads start- Help please!

Yep all done! Feels fabulous & couldn't stop grinning. I feel absolutely fine apart from a sore boob. Can't wait to get back into a decent bra.
Thanks for all the encouragement. It means everything to me.

Jo xx
ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

suebond and atomic

 

I do believe that you both have finished your rads today, so although late as I have not long been home from Bowls, I am ringing the bells for you both, yay you are finished well done ladies, but remember that the next two weeks the effect will continue to build so look after yourselves.

 

bell.jpg

Kaspar
Member

Re: May 2017 Rads start- Help please!

Enjoy your holiday Lizzie! 

Lizzie
Member

Re: May 2017 Rads start- Help please!

Hi Kaspar,
I will give Marilyn Grenville's book a go.
Meeting went well thanks - rads and tamoxifen but not until end July as we are waiting until after a much needed family holiday.
All the best xo
Kaspar
Member

Re: May 2017 Rads start- Help please!

By the way, I have had high grade DCIS with no nodes which was completely removed, so was not tested for oestrogen receptors. Other than being told not to take HRT any more, no one told me to avoid anything else! So I'm reasonably relaxed. Everyone's situation is different though. 

Kaspar
Member

Re: May 2017 Rads start- Help please!

Hi Lizzie 

 

I've been reading Marilyn Grenville's book, it's well researched and I'm comfortable that she has researched her stuff thoroughly before publishing a book in her name. There are many references to research trials in it. I think many medical professionals deter women from things that they may not know about, simply because they need to cover their backs. 

 

Having read this book, I'm comfortable with taking black cohosh, however I'm not on any other medication. If I was that might change my opinion, but for me it's worth a try, but it's not for everyone I expect. 

 

Good luck with your treatment! 

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Kerri

 

Oh flip me, thankfully you are over it now.  And its a great feeling to be back in the old normal bras isnt it.

 

What is the next stage for you now then?

 

H xxx

Lizzie
Member

Re: May 2017 Rads start- Help please!

Hi again Kaspar,

I had a meeting today with my consultant and bc nurse - I asked my bc nurse about the black cohosh and she said it is not recommended for women with ER+ bc - neither is St. John's Wort. She said Evening primrose oil was fine to take.

 

Hope that helps

Lizzie

Lizzie
Member

Re: May 2017 Rads start- Help please!

Hi Kaspar,

Very glad to hear you have finished your rads and are looking forward

 

I am having a look on here as will find out today if I need rads, following a lumpectomy and snb - all clear.  Trying to get an idea of what rads is like.

 

I read about you taking black cohosh and in the back of my mind I think I read something about not taking it if you have had bc.  I am not trying to scare monger - far from it but would suggest you check with your bc nurse or gp that it is ok to use.  I would be interested to know the answer.

 

Take Care

Lizzie

 

 

 

Kezzar
Member

Re: May 2017 Rads start- Help please!

Thanks Helena

 

a but of a belated reply. I was so thankful to finish rads. I face chocolates yo the team and skipped out after ringing that bell. By the time I got to the car I was crying! 

 

Then to to top it off I got an infection in my breast. The go,said it was due to rads. I had a course of antibiotics and am feeling much better.  Just got back into wired bras!! Yay!

 

on to the next stage now. 

 

Kerri xx

Kaspar
Member

Re: May 2017 Rads start- Help please!

So, I'm 11days post rads. I'm tired, but OK, grateful I'm not at work and having to deal with all that. My GP thought I was a bit mad for working all through the rads and says it does as much damage to your body as major surgery! 

 

I'm steering clear of the gym for now. I managed my weights regime last Saturday but felt completely exhausted afterwards and as going up the stairs is an effort perhaps the gym is a bit much!  I've been doing yoga all week which has been really really great. 

 

My emotions are all over the place too! I had to fight back the tears at the end of a yoga class yesterday. 

 

Ive been having some horrible dreams too! Is anyone else getting this? I wonder if it's hormonal from stopping HRT. Last night's was nothing short of a nightmare, related to the huge lung lesion they picked up on my planning scan. I'm still waiting for some more scans for that, so I'm currently not really sure what I'm facing, other than it is probably benign (most likely a cyst) but is probably going to involve major surgery, even though I'm not having symptoms, it's too big already to just leave it there.

 

I've just started taking black cohosh to deal with night sweats etc. I'll let you know how it goes. On the second day of taking it, I actually slept all night! It was fab! Last night I had the nightmare so didn't sleep. Right now I think it's probably too hot weather for anyone to sleep properly! Anyway I'm quite excited about it, as I've had fewer hot flushes over the last couple of days and if only I could get a decent nights sleep each day, I'd feel so much better. 

 

Have a brilliant weekend everyone! 

 

X

Jjmabbatt
Member

Re: May 2017 Rads start- Help please!

Thank you ladies, it's such a roller coaster! Bless you Jacey with your strawberries, I know exactly what you mean, I cried yesterday as there wasn't any cucumber left for my sandwich, and I am not a crier! 

 

Have a a good weekend ladies, we are all so incredibly awesome.

 

julie 

Jacey
Member

Re: May 2017 Rads start- Help please!

Julie (and anyone else feeling dreadfully emotionally) I was like that too, and it's awful! I planted some strawberry plants into containers but miscounted so had one left, which I put into a tub on it's own. Then burst into tears because it was alone! I'm going nuts obviously!
I had 20 rads sessions, 15/5, and have felt tired since (Only 7 days) so I've indulged in just sleeping when I needed to, but I live alone so don't need to think about anyone else. I think it did me good. Rads certainly knock you about: I was lucky to not need chemo, and my goodness me I bow to those of you who did! How strong you are, and I send you my very very best wishes.
OldDawn I hope your return to work goes well, but I've been there before, twice, from other serious conditions, and I strongly urge you to be cautious. Be aware of how you feel: push yourself a little, yes, but certainly not much: consider YOU at all times and don't put the job before your wellbeing. I hope it goes well for you.
Xx
OldDawn63
Member

Re: May 2017 Rads start- Help please!

Jjmabbatt - I can understand why you feel fed up with it all. I finished radiotherapy 6 weeks ago, and the end couldn't come soon enough for me!

 

It was not so much the effects of the radiotherapy, which fortunately were not too bad for me, but having to go there every day and wait around for ages a lot of the time when you'd rather be doing something else more enjoyable / constructive. I'd already had 4 months of chemotherapy followed by surgery, and the radiotherapy didn't start until later than expected, which didn't help.

 

By the time radiotherapy started I just wished it was all over so I could get back to 'normal.' Now it is over, I don't feel lost or anxious, just relieved, and I hope you will feel the same when you get there. I may be less worried than others because I still have further hospital appointments to come, and Herceptin every three weeks until November, so I haven't been totally abandoned by the medics.

 

Even so, I am glad to be going back to work at last next week after 8 months off - OH finally declared me fit this morning!

 

I hope that

Jjmabbatt
Member

Re: May 2017 Rads start- Help please!

Thank you sueB, this forum has been brilliant. I am on here a lot, it truly is a godsend. I am the same, feeling anxious about the end of treatment. It's all I thought about for so long and now it's nearly here, I feel a bit lost. you are so right, nobody knows how you feel unless they have experienced it. Good luck with your treatment, and make sure you ring that bell nice and loud! 🔔 Xx

suebond88
Member

Re: May 2017 Rads start- Help please!

Hi Julie,
It's actually quite scary coming to the end of active treatment. I too have had 2 surgeries, chemo and now radio- diagnosed back in September. The radio is a doddle compared to the chemo ( for me anyway), the hardest/most tiring bit is the traveling back and forth and the waiting around. I can't wait to ring that bell, but also am anxious about coming to the 'end'. Don't know if I'm making sense or not☺️ But being able to chat on this forum has been a great help - sometimes only those who have been through it know what we mean....
Stay strong and positive - almost there
SueBxxx
ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Julie

 

We are always here for you and get you completely xxxx

Jjmabbatt
Member

Re: May 2017 Rads start- Help please!

Thank you Helena, for your kind words and taking the time to reply. Yes you are absolutely right, and I can't wait to ring that bell.

 

Julie 

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Jjmabbatt

 

Well if you stop and think about it you have been through so much and come soooo far so well done you lady, take my hat off to you because I only had one surgery and radiotherapy. 

 

I think part of it is the constant attendance each day for treatment, the travelling to and from, BUT it will not be long before you finish active treatment and we will ringing the bells for you my dear.

 

Sending you a lovely hug

 

Helena xxx

Jjmabbatt
Member

Re: May 2017 Rads start- Help please!

Hi all, I have just had my 3rd lot of RADs, 17 more to go, but am feeling really down and depressed. Not like me at all.  Have been really positive and up beat about things since I was diagnosed in Oct. Chemo, two lots of surgery, now Radiotherapy, I thought would be OK, but have been really tearful. Anyone else felt like this? 

 

I am am having radiotherapy on my right breast and my neck, as 5 out of 24 nodes infected.  One node had capsulated too, which is causing me worry, but I guess the rads is going to clear any rogue cells.  

 

Sorry to be flat, when the weather is so lovely outside, words of wisdom/encouragement would be much appreciated.

 

julie 

 

 

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

suebond

 

we will be ringing them for and with you next Wednesday.  I am at a bowl match until late that evening but I will not forget to ring them when I get home xxxx

suebond88
Member

Re: May 2017 Rads start- Help please!

Afternoon ladies,

am currently waiting for number 10 - 5 to go👍

Left boob is sore and swollen and I'm a bit spotty but clinical check yesterday said everything was going fine and as expected.

it's the tiredness that gets you more than anything, but am listening to my body.

can't wait to ring that bell on Wednesday😍😍🥂

good luck to everyone with treatments this week.

sueBxxx

OldDawn63
Member

Re: May 2017 Rads start- Help please!

Evening ladies, and belated congratulations to Alieck, Kaspar, Jacey, Rooty and everyone who has now finished their radiotherapy.

 

Kaspar - I agree, I can't see how I could have worked through radiotherapy the way things panned out. I would have been physically OK to work part time, but it wouldn't have been practical to fit the work round it most days, because of the time taken up with travelling, waiting around at the hospital etc.

 

Jacey - Flamazine is good, you should find it helps a lot. It's a bit of a waste having to open a new one every week though.

 

Alieck and Rooty - hope the redness goes down soon. Keep moisturising, and if you think it's getting any worse, contact the hospital straight away. I know what you mean about feeling 'flat' Rooty, because I have just got over a bad cold. The sore throat and cough brought back a lot of unhappy memories of T chemotherapy. My first annual mammogram appointment has also just come through as if I need reminding of how this all started.

 

Unfortunately, our holiday in Cornwall wasn't the nice relaxing break we were hoping for. While we were away, I managed to catch the worst cold I have had in years! The first part of the holiday was fine, we had some nice walks (cottage couldn't have been better located, within walking distance of Glendurgan and Trebah). Then the sore throat started, and gradually got worse, developing into a persistent cough. After sleeping on the sofa so as not to disturb my OH and to try and stop him catching it, we decided we might as well go home a day early. I also had to delay my last Herceptin injection because of it. It has taken me a while to shake the cold off, so I have been out of action for a while, but I am a lot better now.

 

On a more positive note, the rash affecting the booster area had disappeared by the time we went away, as they said it would. I don't know whether the Flamazine did the trick or it just went away on its own, but if anyone else has a delayed reaction after radiotherapy it's worth enquiring about Flamazine. You can't use it while you are still having radiotherapy, but you can once you have finished, and it does help to stop the itching. Otherwise, provided the skin hasn't broken, and the radiographers are happy, you could try E45 Itch Relief.

 

Although it has been nearly 6 weeks since radiotherapy finished and the rash and cold have now gone, normality is still some way off for me. My re-arranged OH appointment isn't until 25 May - at first I thought this was ridiculous, but it turned out that I probably needed the extra time to get over the cold!

 

 

Alieck
Member

Re: May 2017 Rads start- Help please!

Hi Rooty, How are you feeling? My breast is still red inside and out and I was shattered on Sunday. As you say it is a funny feeling but my treatment carries on until the end of the year because of the Herceptin. Look after yourself. Alison xx

Alieck
Member

Re: May 2017 Rads start- Help please!

Thank you Helena.  I did not have anything special planned but over the weekend we have decided to go to Dublin this weekend coming. Even though I still feel very sore it is lovely to have something to look forward to.  Alison xx 

Jacey
Member

Re: May 2017 Rads start- Help please!

Oh poop! The skin on and around my nipple has broken and now I've got sores! GP has given me Flamazine and melanin pads so hopefully this will be resolved fairly quickly. What a palarva!
Thanks for my bells though Helena 😊
Kaspar
Member

Re: May 2017 Rads start- Help please!

4 days post treatment! I've been feeling exhausted all week but not so bad today! I've switched the gym for yoga and it's been great. I'm going to try my weights routine tomorrow to see how I get on. I'm worried about my muscles shrinking if I don't do something atleast once a week! Do I dare think the worst is over? I'm a bit wary.

 

For anyone thinking of working through radiotherapy, I wouldn't recommend it unless you have the sort of job where it is guaranteed someone else will deal with what you won't be able to do, considering the time you will need out for appointments. My job doesn't work like that unfortunately and I found it way too stressful trying to cram full time duties into reduced hours. So now I've had a week off to rest whenever I need it and feel much better for that. Until I feel like I'm fully capable of handling my full time workload I'm wary of going back, especially as I understand the effects of the treatment continue to build up for two weeks after the treatment finishes.

 

have a great restful weekend everyone! 

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Jacey

 

Whey hey this is the day we ring those bells for you, dont know what time your appointment is at but will them later for you

 

Helena xxx

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Rooty

 

I can so relate to that, it is the realisation that active treatment is now over and you can start getting your life back.  Oh that sounds a lovely way to start your recovery.

 

Just keep an eye on it, the next couple of weeks is when it builds up before it starts to get better,

 

Helena xxx

Rooty
Member

Re: May 2017 Rads start- Help please!

Alieck and Lady Bowler,

 

Thank you both for thinking of me. I have been so wiped out the last few days and then felt strangely numb and unemotional yesterday. My breast is red and sore inside and out but nothing I can't manage. The relief is starting to filter through and I had a lovely walk with my partner and dogs today in the woods nearby. xx

Jacey
Member

Re: May 2017 Rads start- Help please!

Thank you Helena. My very best wishes to everyone on here, in any breast care unit, radiotherapy or chemo department. Surely one day a cure will be found. X
lynda1955
Member

Re: May 2017 Rads start

I start my radiotherapy tomorrow, my appointment is late afternoon. I will try and continue working during treatment and am lucky that work are being understanding by allowing me to work reduced hours. I am hoping that radiation burns will not be to bad. 

lynda1955
Member

Re: May 2017 Rads start- Help please!

I start my radiotherapy tomorrow, my appointment is late afternoon. I will try and continue working during treatment and am lucky that work are being understanding by allowing me to work reduced hours. I am hoping that radiation burns will not be to bad. 

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Alison

 

The best thing is that there is no more journies to and from, that is what I found the most.

 

Well keep an eye on it as the effects will increase for the next two weeks but you can always contact your bcn or rads nurse to check you out as well

 

Hope you are going to do something nice to celebrate

 

Helena xxx

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Jo

 

are you still doing your exercises, that will help with stiffness xxx

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Sue

 

Make sure that your rads team are aware and keeping an eye on it.  xx

Alieck
Member

Re: May 2017 Rads start- Help please!

Thanks Helena, I have got to admit that I am glad that part of my journey is finished although I still have to have herceptin injections until the end of the year.  I am more sore today so had to see the nurse and have been given dressings. Hopefully it won't get any worse. Best of luck everyone. Alison xx

atomicjojo
Member

Re: May 2017 Rads start- Help please!

Helena I finish on 31st may like Sue!
No problems yet apart from some stiffness in my shoulder.

Good to see all those bells ringing

Jo xx
suebond88
Member

Re: May 2017 Rads start- Help please!

Hi Helena,

 

i'm I'm not too bad thank you.  Just starting to get sore and have noticed a few spots!  Am using plenty of E45.

number 7 tomorrow. Am due to finish on the 31st..have a 'bank holiday weekend'! So no rads on the Monday, last one Wednesday.

good to hear those bells ringing ladies 👍😍

SueBxxx

ladybowler
Community Champion

Re: May 2017 Rads start- Help please!

Sue

 

How are you doing with your rads, when do you finish?

 

Helena