Radiotherapy position - discomfort?

[Debster2016]

Morning Pink Laides! And any honourable male members

I am delighted to have started my 15 radiotherapy treatments, 2 down 13 to go.

Unfortunately I am experiencing a lot of discomfort in my shoulder, to the point of whimpering and feeling my arm twitching like its about to jump out of the stirrup (ok so I squeezed a couple of tears out at no2). I intended but forgot to take paracetamol before no 2 after no1 was so difficult. I will take them going forward.

Previously I wondered - & asked on here maybe? - how they treat a scar that goes around a corner.... well now I know! I'm on the radio bed, my right arm is in the sling and my body is then 'hoiked' or man handled by the radiographer to face to my left. This results in my right arm being pulled into an unnatural position, putting a deep crease at th back of my shoulder. It also increases the stretch thro my armpit and as anyone who has been in this forum since I have will know I have an issue with cording! Yes, still! 24 weeks post surgery! And now it hurts! Well only when I've 'assumed the position'!

For the record I have tried to get physio for this myself...long boring story, the short version is it still hasn't happened.

Then I went to Bath hospital for the cat scan to plan the radiotherapy.

The first radiographer, after asking how I am / was, heard all about it! And, bless her, referred me to everyone! physio, counselling, lympheodema clinic later that day. And the nurse at the lymph clinic advised me not to keep the appt made with a physio as I was now under the care of Bath who would treat my cording! Huzzah!! Since then I have been doing my arm exercises twice a day.

That was 3 weeks ago! I think my cording has regressed again 😤. And I have now started radiotherapy and it isn't very nice!

Lord it feels good to vent 😌. I don't mean to be nothing but a whinge bag but I am genuinely sorry for being a whinge bag. It is good to know I only have 13 more days of treatment - psychologically it's a fantastic feeling - but i realise there are still a lot of things to get on with after this. And I will. After all we all do don't we.

Have any other ladies on here found the radio challenging, and how did you handle it please?

Many many thanks for your support, ladies.

Wishing everyone a good bank holiday weekend and that it stays dry for you all 😁🌥⛅️🌤☀️.

Xx

[Nixh]

Hi Debster, sorry you're suffering, vent all you like... it feels fab having a moan!

My radio went quite smoothly...the movement in my arm is generally good I think because I play netball and continued to do so after my op and all the way through treatment. Saying that, mentally it was challenging as is so intense. Have been lucky that most of my treatment has been done privately as had a work policy so had my radiotherapy done that way. Have had many years of experience at the RUH though (was part of their breast family history clinic and was diagnosed there). Is a fab hospital and have nothing but praise for the treatment I've received there. Am also having my final recon there as my insurance company won't cough up (but that's another story!!)

Keep doing the exercises is all the advice I can offer.. I had some cording after my op but rubbed and stretched my arm all the time (was bloody painful but worth it!) I think also the more you tense whilst being scanned the more it makes it achy and painful. One day in my treatment they couldn't get one of the scans done properly and they repeated it three times, each time I fretted more and more and could feel my shoulder almost seizing.

I hope the rest aren't as painful or stressful, maybe take some pain relief before if you aren't already?

Hope you enjoy the holiday weekend too,

atb,

Nix x

[Debster2016 in reply to Nixh]

Hi Nix I thank you very much for replying, I realise I may have gone abit over the top again! Well done on playing netball! I used to play..... I'm pleased to hear you are both experienced and happy with Bath RUH. I'll be pleased to follow your progress with the reconstruction if possible please!

Yes I'll try not to forget thenparacetamol going forward.

TBH my arm movement isnt bad! A radiographer checked me after no 2, I can put my hands to the back of my head and I can do my bra strap up behind me so she couldn't do anything for me. I don't have full movement but I'd say I can achieve 85?% reach of the breast care post surgery exercises. So i really don't know why radio is so difficult. Could it simply be an impossible position what with my armpit feeling wrenched as the arm is pulled behind me by the repositioning of my body?

Bless you yes I am still doing the exercises, again I've regressed since doing them twice a day as the cording has re positioned further down my upper arm than before. Hence my frustration.

One lesson I've learned from this is to post shorter messages haha! 🤣🤣🤣.

Therefore I am grateful to you for employing.

All the best Debbie x

[Louisejr]

Hi Debbie

I found I was extremely emotional throughout my RT, couldn't put my finger on how I was feeling, just out of sorts as if I was coming down with something. At my weekly meeting my RT nurse said this was completely normal. It is amazing what you think about too when you are laid there on your own arms akimbo so to speak.

Just keep going - you are nearly there,

Sending love and hugs.

Louise xxx

[Debster2016 in reply to Louisejr]

Ah thanks Louise, appreciate your honesty. Have now had 3 (radio - free) days to set my sights firmly on the last one, stretch my damned cords to kingdom come (!😳) and plan celebratory meal for end of treatment 🍾🥂💃.

Hope your keeping well xxx

[Louisejr in reply to Debster2016]

I'm pretty good at the moment thank you, feel almost normal (whatever normal is these days)

I appreciated the weekends off, maybe because I had mostly 8.00 appointments and it was good to have a lie in!

It's good to have something nice to look forward to make sure you do something special - you deserve it.

Good luck for the last round. 😘xxxx

[Mac99]

Hi, I remember the days where I would be lying there and feel my whole body tense. I had bad cording but I constantly massaged it and stretched it out. In the evening I would sit on couch with arm stretched up on pillows stretching stretching. I think the word manhandle that you used says a lot. Often I would come out feeling like a lump of meat as they move you around, talk over you and then leave you alone for the next 15 minutes. Yes they have to do this and even though you know this for me some days I became very tense especially when there were new people and my arm was always more stiff on these days. It does not last long, and when it is over you can chalk it up to experience

[Debster2016 in reply to Mac99]

Ahh Mac99 thank you so much for your words and honesty, they really help. I sooo looo forward to looking back! I am resigned to it 😳😌 only 12 to go 🍾🥂

Did you have lymph fluid hanging around too? I am conscious of aggravating that.

I exercise twice a day thro the pain barrier!

[PennyHopes]

I'm on my second radiotherapy session- and from reading your horror story - I'm so very very glad I got physio that completely got rid of my cording or I would be seriously miserable!! I'm staring down another 24 sessions with buckets of pure aloe Vera gel and this cream we get in the States called Aquaphor ( it's the recommended cream here). Radiation oncology nurses are there to address any issues - both sides of the Atlantic, I've heard- so please please mention any niggles X

Regards

Pennyhopes

[Iknitandstitch]

Hi

I am a mess every day I go 9 down 6 to go ! I have not been treated well with my sessions - tried closing my eyes and breathing only to be grabbed by a male around my hips (which are tender who knows why) I screAmed as he didn't tell me he was going to move me - and the look he gave me was not nice - from the very beginning of this awful treadmill I found myself on it has gone wrong no care or compassion at any stage only from the breast surgeon

I manage to break down and cry at every session when they leave the room, just can't seem to manage to stop myself... so dont feel bad like its only you there are others to that are not coping too well

I could say a lot more but that's possibly enough for now... rotflmao !!!

Diane 😂😥

[Debster2016 in reply to Iknitandstitch]

Oh my goodness Diane you poor poor thing, what on earth monster hospital are you at? For the record thank you ever so much for sharing, i don't feel so alone! I am so very sorry you've had it this bad, poor love. It is wrong, and something should be done about it.

My hospital offered me the option of not being seen by a male radiographer so I said yes pls thank you and reiterate this at each session.

Please please ask for the same, say "am I allowed to request male only staff pls?". If asked "Why?" say " it's personal and of an unsavoury nature, you wouldn't want to know". Work it. This at least may stop you from getting another dirty look which only adds to the bad taste already in ones mouth from the continuous supply of bitter pils.........

And please, do consider complaining ( better still, providing feedback!) about it / him - surely he could have said he was about to move you. Mine do, they even say ' try not to help me' and I'm no light weight 😳. You are likely to be one of a number being treated poorly 😱; change won't happen without feedback. You cld maybe just mention what happened / s on your way out, it doesn't have to be official/in writing or take up too much time. Start by apologising even to create a sympathetic atmosphere...

So far I've made 2 complaints, chose & regretted not to log a previous one and intend making a 3rd......when I have the energy.

sadly compassion doesn't exist in some health care professionals who believe the 'robust pull your socks up and get on with it jolly hockey sticks' approach is best. Or maybe that's how they remove their own emotions from the situation for self preservation. Either way they should find another job.

Sweet heart if you break down and cry they should know this - hopefully it will prick a conscience or two - (revenge can be healthy).

And for sure give yourself something good at the end of each session....wine, cake, a rant on here, new clothes (don't have to keep them).

Hopefully take some comfort if you have light at the end of the tunnel from here?

Wishing you comfort and sending virtual hugs 🤗🤗xx

[Iknitandstitch]

Thank you so much - it took me 5 days to formulate a letter which I read aloud today to the person who reckoned that I couldn't have a reaction after just 2 days - she has now been told differently and the whole dept. Is going to be told yes it is very rare but it does happen

I am at Mount Vernon which has a brilliant reputation but unfortunately I got the rough end of the stick - she did sound every contrite and apologised profusely which did seem to be genuine and she said that they needed this feedback so they can adjust what they say to patients - sounds like there is a set number of responses to utter no matter what you may say... lol

I had awful treatment at Edgware Breast screening unit then followed by the most awful time at Nortnwick Park Hospital when give the diagnosis from the most evil man on the planet and yes I have written and complained about him too ..... to which I have received the usual whitewash letter I am waiting till RT is finished next week then I will be writing in response to their reply and if I don't like what they say I will be taking it to the ombudsmen and the minister of health and my local MP I also suffered at the hands of an incompetent nurse at my pre-op too as I said before fortunately my lady breast surgeon was lovely and all went well with surgery.

I am having a long term love affair with Morrison's extra mature Scottish cheddar cheese and onion crisps which isnnt doing my waistline any good but the hell cares, done the shopping thing too - love 100% cotton cardi's in Primark !!

Only 5 more to go I only have female staff now the men are there but now never enter the room when I go in plus another member of staff comes to see me before each session and ones in the room with me plus if the girls need me shifted they get me to do it - they just ask me to move just which way and how much so they have obviously been told

I have not just had this to deal with in 2015 things went wrong with hubby and he is now housebound and hardly able to walk

I had operation on my hand and in plaster for 7 weeks last year I had mini stroke followed by op. On foot then on shoulder then 2 benign cysts removed from my back then this all started in Feb. This year so there has been a lot going on and this to coin a phrase is the straw th a broke the camel's back !!! after each thing I was not allowed to drive ranging from 7 weeks to 4 weeks for each operation and the stroke ... is it any wonder my BP has been elevated!

Anyway there are those worse off then me ... oh yes I forgot I have had 3 yes 3 knee replacements too

Lu Diane 😂😢