Member
Posts: 369
Registered: ‎14-07-2017

Re: April 2018 Radiotherapy

Andi, I know how you feel! The travelling to and from the hospital is far more exhausting than the treatment(so far!). I’ve been shattered and I’ve only had 3.
Bizzy Lizzy, hope they have found out why you are in so much pain with your shoulder, and that it will help them to get the pain under control. Well done, persevering through it!
Whyte fawn - only two left! Nearly there! How do you feel? I would recommend exercise(if you have the energy). I self referred to a physio and then she gave me 3 months free at the gym with a personal trainer to help me get back into it without injuring myself. I think the nhs do this all over the country. It’s been fab, and the personal instruction has helped build my confidence and fitness gradually and safely.

Hope you are all enjoying some sun ☀️

Cxxx
Member
Posts: 39
Registered: ‎02-03-2018

Re: April 2018 Radiotherapy

Hi

Sending positive vibes to you all ❤

I'm on 14/15 now ... last one is on Monday 👊. Very pink now and have quite a few little spots come up. They mentioned placing both my creams in the fridge to help calm my skin down and I've found it feels so much better putting it on now by doing that.

I'm training for a walk and have been wearing a M&S post surgery high impact sports bra that I have found really comfortable 😊. xx
Member
Posts: 45
Registered: ‎26-08-2017

Re: April 2018 Radiotherapy

WhyteFawn,

I’ve been exercising throughout - keeps me sane. Just got off the spin bike after a 2 hour session!! Did a (gentle) hour spin the day after surgery and most days since. Have just started back with arm exercises (weights). My surgeon’s advice was to do a routine that feels safe one day, and if I’m not puffy and sore the next day, I can do more the next etc. There was new research a few years ago that says weights actually reduce lymphodema risk.

It seems to be helping my energy levels and isn’t doing my breast any harm. Am wearing a sports bra for it. Hope that helps.
Member
Posts: 63
Registered: ‎17-01-2018

Re: April 2018 Radiotherapy

hi there and thanks so much for your kind messages 

I endured 9th Rads yesterday and saw my oncologist who has prescribed morphine and also steroid tablets 

I am going to have a MRI scan to see what is happening to my shoulder hopefully today 

Tuesday evening it was so bad I had to go to my local hospital and was given IV morphine which helped 

I could still feel the pain but was too out of it to actually care ! 

They are thinking it is the position we have to lie in and having ME is contributing to making it so much worse

number 10 today and determined however much pain I'm in that I shall have it as want the whole experience over asap ( sure I am not alone in this as know we all do ! ) 

thinking it may be a rotator cuff injurySmiley Sad 

funny thing is my skin isn't too bad at all - some pinkness but not too sore - shouldn't tempt fate.

hoping we all get through this as well as possible x 

 

Member
Posts: 661
Registered: ‎09-08-2017

Re: April 2018 Radiotherapy

Yay Nat half way through today. I'm just waiting for no 13 of 15. 2 more to go after this!
What's everyone up to this weekend?
Is anyone exercising whilst on rads? I want to get back into exercise but I'm conscious of wearing tight sports bras and it rubbing on my rads side. Any ideas?
Member
Posts: 45
Registered: ‎26-08-2017

Re: April 2018 Radiotherapy

Hi everyone!

Just sitting in the waiting room waiting for number 9 of 19. Tomorrow’s number 10 will mean I’m half way through...

Am a bit pink and sore but not too bad. Feels like mild sunburn. I’ve been getting more tired this week - but am just going to bed an hour earlier and functioning fine during the day. The radiographers here rationalise it as just your body coping with the damage to your tissue by needing more time to spend on recovering. So all ok.

I’ve also got cording post surgery and have been seeing a physio which has helped hugely. Just come from a physio session and it’s feeling so much better. She’s quite tough on the cord and it seems to work.

Hope everyone else is doing ok. I’m looking forward to a weekend in this lovely weather!
Member
Posts: 95
Registered: ‎02-02-2018

Re: April 2018 Radiotherapy

Hi Everyone
4 of 15 today and no side effects as yet. When do they start? Drinking 2ltrs of water and cream 3/4times each day. Actually looking forward to having the weekend off. Not because of the treatment, just the long tedious journey and queuing for the car park.
How is everyone getting on?
WhyteFawn not long now. I will pm you.
Cathysid /Nat how was the session today?
Bizzylizzy how is the pain now?
Hope everything goes smoothly for all having rads this month
xxx
Member
Posts: 369
Registered: ‎14-07-2017

Re: April 2018 Radiotherapy

Hi everyone,
Hope you are all doing ok, and those of us with side effects are getting the help and support we need. I started day 1 of rads today. It was a long day and a bit emotional as I had to go back to the hospital where I had my chemo. Felt like a cancer patient again, after having a couple of months of feeling almost normal(except for on and off fatigue). 4 hour round trip today. Hoping to get it down to a couple of hours as time goes on.
What a lovely sunny afternoon to come back to though. Enjoyed watching the kids in the paddling pool, lying in the sun and a cheeky evening cider(!) Guess that’s NOT what they meant when they said I should drink more. Well, one day down, 19 to go...
Cx
Member
Posts: 661
Registered: ‎09-08-2017

Re: April 2018 Radiotherapy

Great news Andi you're ticking those sessions off.
My last one on Tuesday is 9.10 and I'm down to be on la6 but that could change. I've mostly been on 5 or 6 but did go on 7 the other day.
Member
Posts: 95
Registered: ‎02-02-2018

Re: April 2018 Radiotherapy

Leprechaun
well done on getting through planning.
The actual rads sessions are really very quick. I have had 3 now and each one has been in and out (including undressed / dressed) in less than 30 minutes.
The staff are wonderful so don't have any concerns. Don't forget to pop back on here and share your progress.
WhyteFawn
Well done .....you are nearly there. The bell is in your sight!
My appointment times have been varying every day and as I am in LA8/9 I haven't seen you in the waiting room .
What time is your last session next week? Would be nice to be there to congratulate you.
Love to all xxx
Member
Posts: 2
Registered: ‎31-03-2018

Re: April 2018 Radiotherapy

Hi to all the lovely people on here going through so much.
I had my consultation you were right Andi it went very smoothly in and out within an hour.
I start my treatment next Tues I have 23 I have my end date of 25th May which just made me feel happy to see an end date.
It's very brave of you all.to share your stories and it helps me alot.
I'm going to get plenty of cream as I'm very fair skinned and have sensitive skin. I'm going to try and keep active like you all suggest.
I wish you all.the best with your treatments and your all doing well.keep positive.
I hope.you all are enjoying our much needed sunshine 😊
Member
Posts: 661
Registered: ‎09-08-2017

Re: April 2018 Radiotherapy

11 done and 4 to go! Skin is a little sore and spotty but so far holding up ok. How is everyone? X
Member
Posts: 271
Registered: ‎31-07-2017

Re: April 2018 Radiotherapy

Well done ladies, Cassie you are so close to the end! 8/15 for me today. Only my upper chest seems to be affected at the moment, and spotty rather than pink! Not sure if it’s the cream or the treatment? Sticking to aloe Vera now. Some stiffness at times, but no problem doing exercises so not concerned.
I agree it’s a bit boring going every day! And my times are all over the place so no real routine either. I don’t have a review until 2 weeks after I’ve finished, but think the radiographer are keeping an eye on my skin. Tiredness comes and goes, as do the aches so just have to go with the flow.
Keep going everyone, we’ll all soon be done. Xx
Member
Posts: 45
Registered: ‎26-08-2017

Re: April 2018 Radiotherapy

Done 7 of 19 now. Going a bit pink and feeling swollen but also just getting bored of going to hospital every day. I want this over now!

 

felt very tired today but hoping that’s a one off and not bad fatigue. Will get an early night...

 

BizzyLizzie - hoping you’re ok. 

Member
Posts: 661
Registered: ‎09-08-2017

Re: April 2018 Radiotherapy

Sorry I can't be more helpful Bizzy Lizzy but I hope you find something to ease your shoulder pain soon. Your rads team may have Some ideas.

How everyone got in today? I've had 10 with 5 to go!! Had my review and the next review will be after my last one. Can't wait as going to the hospital every day is getting really boring now.
My skin is now a bit pink like sunburn. Radiologist was ok with it and said to just keep applying cream.
Member
Posts: 271
Registered: ‎31-07-2017

Re: April 2018 Radiotherapy

Sending you a gentle hug Bizzy Lizzy, it’s awful when there seems to be no respite. Hope you find something that eases your pain soon. Xx

Community Champion
Posts: 6,646
Registered: ‎29-05-2015

Re: April 2018 Radiotherapy

Hi Bizzylizzy ,I have ME so appreciate that often things are just that little bit harder for us than the average person and our reactions to drugs /treatments can be more extreme. Have you asked the radiographers if there is anyway they can change the position of your arm ? There was a lady on the forum who had had a bad shoulder injury and they managed to work round it .Hope you can manage to get through your remaining sessions .Jill x
Member
Posts: 380
Registered: ‎23-09-2014

Re: April 2018 Radiotherapy

Hi Bizzy Lizzy,

 

Sorry to hear you are experiencing shoulder pain through rad's....and a few suggestions which you might want to consider.  

 

If you are experiencing nerve pain, you might want to ask your doctor if something like Amytriptyline might help? From what I understand it is more targetted at nerves. 

 

You should be continuing to do the exercises that you did post op to help ease tightening through rad's, though I sympathise that exercises starting when in pain aren't the best, but it might help ease it?

 

One very simple exercise which may help your shoulder could be yoga arm swings. You stand up, feet below you just slightly apart, knees very slightly bent (as opposed to locked bolt upright). Raise your arms up in front of you (no higher than chin level) and then gently swing them down and back, then down and forward (if someone was looking at you side on you would be moving your arms from 6oclock straight up to 9oclock then back to 6 and back/up to about 4 or 5 oclock, what ever is comfortable). Carry on very gently and it usually helps ease should mobility. Fine to do them for 10 mins or so...most people hear a bit of clonking as the should loosens up. 

 

Try and stick with the rad's. You could also ask if it would be possible to have a referral to a physio, but I appreciate waiting times may mean this doesn't fit the rad's programme.

 

I hope it improves. Sending positive vibes (from someone who is much further on and way post rads).

 

Seabreeze    

 

      

Member
Posts: 837
Registered: ‎10-07-2017

Re: April 2018 Radiotherapy

BizzyLizzy - so sorry to hear you are having such a rough time of it - have you spoken to your BCN - they should be able to help you?

I can sympathise, I am feeling some stiffness in my left shoulder (I am right handed) it is not stopping me doing anything, and because of my joint hypermobility I am fairly supple.

 

You are over half way - and you can definitely do it - one more big push over the line and then your zapping is finished!!

 

Did they give you any arm exercises after surgery?  Maybe you could try them again?? 

 

Sorry I can't give any more practial advice

 

take care

 

xx

Member
Posts: 63
Registered: ‎17-01-2018

Re: April 2018 Radiotherapy

Hi feel again like the voice of doom ""

im having number 7 today of 15 

i have developed the worst shoulder pain - think it's from the position we have to lie in and my ME 

been twice to GP 

cant use my left arm properly or write infact the whole arm I'd useless and I am left handed 

hopIn that the Rads haven't damaged my nerves - as having shoulder and breast Zapped !!! 

Full of opioids / naproxen and voltarol gel but excruciating and thinking this may be the last I can endure 

juat cant do it Smiley Sad