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April 2018 Radiotherapy

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Re: April 2018 Radiotherapy

Wow, nearly there Mhaz! Well done x
Member

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 

Member

Re: April 2018 Radiotherapy

Hi Lesley,

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

xxxx

Member

Re: April 2018 Radiotherapy

Hi Whytefawn
Everything fine today thank you. Horrendous journey to the hospital lengthy traffic queues due to an accident . Was fretting I wouldn't make it on time which was more stressful than the treatment!
1 down 14 to go and as everyone says the 2 hour round trip is the worse part.
Nursing staff as ever were excellent, so kind and caring and the treatment itself was just fine.
I looked out for you this morning but they whisked me in on arrival.
Glad to hear you are on the homeward straight.
Will you be ringing the bell on your last day of treatment?
Good luck to everyone else having rads this month and those anticipating a May start.
xxx

Member

Re: April 2018 Radiotherapy

6 left now!! Which is good as I'm getting very bored of going to the hospital everyday.
Andi I hope your first one went well today.
Hope everyone else has a smooth treatment day x
Member

Re: April 2018 Radiotherapy

Hi Leprechaun
Just to echo Nat''s comments.
I had my planning appointment last week and start rads tomorrow.
I felt really anxious the day beforethe appointment but had some very encouraging comments here on the forum.
The whole appointment was less than an hour. Very very simple
Scan
Tattoo markers
Chat
Consent firm signed
Done and driving home.
You will be done before you know it.
Come back on the forum and let us know how you got on
Best wishes xx
Member

Re: April 2018 Radiotherapy

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".

 

pause...

 

Mum: "have you thought about wearing suntan cream?"

 

!!!!!! 

Member

Re: April 2018 Radiotherapy

Dear Leprechaun,

 

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

 

 

Member

Re: April 2018 Radiotherapy

Hi
I'm new writing on here, but been reading alot of your messages.
I have my 1st planning meeting on tues at radiotherapy appointment it says allow upto 4hours!
I know it involves CT scan, and tattooing but not sure what else. I have to have 25 sessions, 20 full breast and 5booster. I'm hoping I get my start dates for this to get my life back to normal.x
Member

Re: April 2018 Radiotherapy

BizzyLizzy,

 

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. 

Natalie

Member

Re: April 2018 Radiotherapy

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 

Member

Re: April 2018 Radiotherapy

Well done WhyteFawn ....more than half way now. My first is on Monday. ..I may catch you in the waiting room!.
Well done to everyone going through treatment this month.
Relax now for a couple of days and enjoy the promised good weather xx
Member

Re: April 2018 Radiotherapy

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!

Member

Re: April 2018 Radiotherapy

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

Member

Re: April 2018 Radiotherapy

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

 

Community Champion

Re: April 2018 Radiotherapy

WhyteFawn

 

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

Member

Re: April 2018 Radiotherapy

8 down with 7 to go!!! Over half way through. I was eyeing up that bell on the way out if the unit today.
Good luck everyone with treatments and appointments today x
Community Champion

Re: April 2018 Radiotherapy

Nat

 

that is ace, so simple but effective.  I agree with Jencat you should patent it Smiley Happy Smiley Happy

 

xxx

Member

Re: April 2018 Radiotherapy

What a good idea Nat, you made me laugh! Perhaps you should patent it Smiley Happy x

Member

Re: April 2018 Radiotherapy

No change in skin for me apart from my rib - love the idea of your boob hole!
I’m sure the booster targeted sessions will result in more of a reaction.... but I’ll worry about that when I get there!

Member

Re: April 2018 Radiotherapy

I haven't see any change in my skin yet but I do get the tight feeling.
Had my second zoladex injection today. After rads tomorrow I'll be over half way through!!
Member

Re: April 2018 Radiotherapy

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!).

Member

Re: April 2018 Radiotherapy

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

Member

Re: April 2018 Radiotherapy

8/15 for me today and must admit had up and down days. Am feeling quite tired now and even though feel tired I too am having disturbed sleep. Tried out the mindfulness app, relax meditation and I found it helps relax me 😊, so am trying the same technique to help me sleep at night.

Sending you all ❤ & hugs xx
Member

Re: April 2018 Radiotherapy

Maybe just the way your body reacts to the treatment. Just because they've never seen it before doesn't mean it's not the case. Everyone is different. Have a nice bath and a hot chocolate before bed I'm sure that'll sort you out. Makes me feel sleepy just thinking about it.
Member

Re: April 2018 Radiotherapy

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! 🤞

Member

Re: April 2018 Radiotherapy

Hi all. No 7 done just 8 to go. The hospital trips are beginning to get really boring now!
Sorry you've been experiencing disturbed sleep. I've not been too bad but I'm making sure I get some exercise in each day.
Member

Re: April 2018 Radiotherapy

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

 

xx

Member

Re: April 2018 Radiotherapy

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 ☢️😎

Member

Re: April 2018 Radiotherapy

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.

Member

Re: April 2018 Radiotherapy

It certainly takes a chunk out of the day, as Nst says hang on in there - nearly the weekend and 2 days off!!

Can I ask - is anyone experiencing disturbed sleep? I normally sleep really well but I’ve had a couple of nights now of wakinf, also tossing and turning and not being able to sleep despite being tired.
It might be unrelated, it’s so easy to blame everything on the treatment!

Xx