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 injury
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
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.
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
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).
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
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
Thank you for your reply.I have asked about the results and have been told I will hear soon. Like you said Lesley I also feel that It's the not knowing and the waiting that's the worse.
Ive had a good day today, been for a walk and on my treadmill, feeling a bit more energetic.
Big hugs to all you lovelies
If anyone wants a smile, here is a conversation I've just had with my mother.
Mum: "how is your face?"
Me: "my face is fine......(puzzled voice)... what might be wrong with my face?"
Mum "I thought you said that the radiotherapy had made you a bit pink?"
Me: 'yes, on my breast - where I'm getting the radiotherapy"
Mum; "Oh - I assumed it would be your face that went pink".
Mum: "have you thought about wearing suntan cream?"
Don't worry - I can't see how it can take 4 hours! They are probably just being really careful and allowing time for delays.
What I had done was:
- measuring me up on the CT scanner (as if I was being zapped)
- a chat with a radiologist just to explain what was going to happen and to go through consents, and to advice on cream
- the tatooing (which they did while I was lying on the CT scanner - just a pin prick with a needle)
- practicing my gated breathing.
I think I was out in about an hour.
I hope it goes well. I know I was really wobbly and emotional when I went in for my planning session as it was the thought of what was ahead that made me feel low. But the staff were really nice, and since it started I've just been counting down the days.
Good luck... x
so so sorry you’re having such a horrible time.
I feel very lucky that my underlying fitness and health is good (other than this cancer) so I can only imagine all of this on top of ME. But I was so knackered yesterday I struggled to keep awake on the way back from my rads and went to bed at 7.30pm as soon as I’d had something to eat! The hormone therapy (Letrozole and Zoladex) is also giving me fatigue (are you on that too? I’ve been on it 9 months now and the fatigue was really bad between months 2 and 7 - it was just easing before I started rads. Rads do give you fatigue so it might just be the rads.
The painful shoulder must be horrible too with the rads. Is it cording? I’ve managed to get a physio to help with my cording which has helped a bit. And I’ve been on antidepressants before - yes, they can do that in the first few weeks. But antidepressants might help so it might be worth speaking to the GP about a different brand?
Thinking of you. Hope you get some rest and relax a bit over the weekend.
5th Zap done -10 to go I'm having the minimum do feel for you all who are having more zaps
have a really stiff and very painful shoulder - also was given a new drug by my Gp to help with my anxiety/ depression poor sleep and appetite loss however
i cant take it as so so sedating and made me even more fatigued with my ME that the radiographer offered to use a wheelchair to take me back to get transport legs like jelly and dizzy like I had been out on the lash
i really didn't want to use one as it has been many years since my ME diagnosis since I couldn't walk so was determined to walk - I cannot keep my eyes open
I'm hoping it's the drug and not ME related but could be the Rads but too soon at this point - so again I'm so anxious how it will be in another weeks time !
the journey today there and back and treatment time was 4hours - better than 5/6 hours the other days
i feel like the voice of doom on this forum sorry to be such a total misery prior to this I really wasn't like this infact I was a actually good fun !
Nat thanks for your message -
lesley sorry about your soreness and redness sounds awful
5th zap done. Only 14 to go! Gosh, I’m already really sore though. The side of my breast feels like sunburn.
Looking forward to the weekend off. Have a great weekend everyone!
Great news Cassie, less left to do than you’ve had! I’m the other way round number 7 for me with 8 left!
Oh Lesley that’s a shame but pleased the nurses are on the board and hope they’ve managed to catch it in time. Hopefully the rest over the weekend will help too. Enjoy the break from the routine. Xx
9 down, 11 to go for me.
Left the unit with a dressing under by boob today - with a replacement one for the weekend. The skin hasn't broken down yet, but they were concerned that a) it could breakdown over the weeknd and I would be left high and dry b) they might be able to stop it breaking down.
The rest of my skin/tissue is coping very well with the rads so this is a bit disappointing - but hey ho ... got to be dealt with
have a lovely rads free weekend everyone
Yay, it will go quickly now you have turned the corner and you will soon be ringing that bell. Have a lovely rads free weekend xxxx
just home from number 4 of 29. Am very fair skinned so definitely now pink. Looking forward to a weekend off.
I've been struggling to work out what to wear to sleep in/ on the sofa in the evening as it still feels too cold to not have something on my shoulders, but my boob doesn't want to be covered. So I've taken an old T shirt and cut a boob hole in it. Super comfy. Just very glad noone can see me (hubby is currently in the US on a work trip!).
Lesley you make me feel exhausted just reading what you do daily! Well done you. Hope the extra tips help you sleep better.
Number 6 for me today, looking a little dark under my arm, and the middle of my chest is a bit blotchy 🙈 radiographer said that is likely to react quicker as more sunlight has reached that part over the years! She said to try Aloe Vera but needs to be 99% - haven’t checked mine yet it’s in the fridge! Chest wall feels tight but can still do my exercises at the moment. One more then we all have a couple of days off..can’t wait! Xx
We are getting there slowy!!
I'm walking (briskly) for 30 mins and 15 mins on a static bike every day. Plus I park at the wrong end of the hospital and walk the 1.5 miles there and back to radiotherapy each day.
I've stopped using my iPad/iPhone after 8pm.
It will sort itself out! 🤞
I'm definitely losing it - today was number 8 - not 7!! all done now
Spoke to the girls and distrurbed sleep isnt something they have heard of before. They suggested boring tv and a hot chocolate!!
I am trying to watch what I am eating so maybe it's a touch of hunger??
Anyway not the worst of things - just have to suck it up!!
Happy Thursday to all
thanks Nat - it's sort of good to know its not just me! But sorry to hear you are having a rough time sleeping too!
I'm going to mention it to the radiographers this morning - no 7 for me today ☢️😎
Lesley - yes, I've had the same (disturbed sleep). I usually sleep really well, and even did through diagnosis and after surgery, so it's really unusual for me. I'm on rad 4 today (so early days) but my first night i hardly slept, with really vivid dreams, and the last few nights I haven't slept well either. My fitbit sleep pattern tracking verifies that it's not just my imagination!
I wondered if it was the rads too? Wierd.