Hello Shas, you must have had another three sessions since posting. I do hope you managed without pain and are feeling more positive.
I found I needed a radiographer to help me get my arms into position each time, and help me unfold myself after treatment. By the 15th session, my left upper arm was very painful, the nerves presumably being damaged by the axillary node clearance. In any case, I have osteoarthritis in all my joints. A radiographer placed a gel pad between my upper arm and the support, which helped. Taking paracetamol helped also, and sometimes a 2mg Diazepam before the session.
It was noticeable that the older radiographers were more detached and less ready to recognise problems I was having than the younger ones, who were much more ready to check how I was generally and to be supportive.
You will survive. I think we just have to be prepared to speak out about our needs.
Hello again Shas,
Oh bleeding heck, you are going through the radiotherapy mill aren't you. Glad you have got pain relief and relaxants - and hopefully the weekend rest will help.
My arm was getting more restricted during the sessions but I managed to put it in and keep it in position. I had worked hard to get movement back after surgery even if it still hurt. After radio I felt back at square one but there you go, just got to get on with it again. It is much better now and any discomfort between arm and surgery site is very manageable.
And it will improve for you too with exercise, use and time. Just 9 more sessions to go - you will do it. Very glad that you took charge and that you are feeling better about how your sessions are staffed and managed. Onward and upward Shas! x
What a understanding supportive post. I am sorry to hear that it was difficult emotionally at the time of radiotherapy. Also saw your other post about the adapting to life after treatment. Yes - it's a bit of a journey isn't it? I wish you well with it Sunflower and may you be as bright and blooming as your name.
In my opinion, when it comes to radiotherapy, people can tend to just think of the physical aspect of the treatment and compare how much "doable" (that word is so beginning to grate on me for some reason),it is to something like chemo. But it all depends on individuals, their individual journeys and treatments so far.
Physically, I did not feel any additional fatigue, my skin was good, I did not feel the need to drink litres of water. The worst physical effect was that I had just got my arm back to some decent movement and the treatment almost put me back to square one again.
Weighing up the pros and cons, after being on the treatment conveyor belt for so long, was tiring. Scared if you do, Scared if you don't - with the latter winning. I was "battle weary" (to use one of your terms), by the time I had got to radiotherapy. I was also frustrated. It was nearly a year after diagnosis and it was being thrown into the mix at a late stage, when I could have been informed about the recommendation a lot earier. I was quite angry about the whole thing. I even thought the first radio oncologist had mixed my notes up with someone else and so asked for a second opinion. That delayed things even more!!
That's all another story. Whereas I voiced my opinion at the time, I have never had a decent explanation. So to get closure on this and a couple of other matters, I have had to raise any issues formally. That's all part of my "moving on" journey and I feel able to deal with such matters now.
Regards and best wishes to you all x
I am so with you so to speak. That lying there, continually exposed to strangers with your arm up whilst you are still trying to come to terms with how you look and feel can be emotionally challenging. I get annoyed when people say things like "well they have seen it all before..." because they are so missing the point - for one thing it is not about them is it?
I suppose radiotherapy can be a relatively easy journey in some ways but not in others. I found it easy to have it done physically but emotionally it was initially a different kettle of fish, especially as I was still coming to terms with my surgery which I use to describe as a nuclear bomb site at one point. I found it hard to look at it myself nevermind anyone else. I was also still experiencing pain and high sensitivity in numerous areas so strangers touching me was like another necessary evil. I was also at the point where I was suffering treatment fatigue as I had had chemo first and it all just seem to be going on and on....
At my planning meeting, I requested female staff only and treatment essential staff only i.e. no students/unnecessary onlookers so to speak. I know people have to learn etc but as far as I am concerned there seem to be ample people who do not mind trainees etc and if it was a major problem then we would not be given a choice. It was important for me to establish some control over my treatment. Also, apart from obviously the first day, there was never a day when I was faced with totally unknown staff which was great.
After the first few occasions, I did find it easier and it just became a regular activity for a few weeks with the most annoying thing being the impact it had on my arm movement and the bleeding return trips to the hospital everyday.
Best wishes to you Shas and hope your treatment goes well and that you had/have a positive review meeting today. x
I didn't have a mastectomy but I also found the radiotherapy difficult. I think it is perfectly understandable how you feel. Firstly, they can cover you with a gown for the treatment, you only need to be uncovered for the setting up. Secondly, I would to speak to the department and ask if it's possible for you to have a female team? It might not be possible all the time, but even if it was a woman doing the positioning it might help. Please ring them and ask to speak to the superintendent radiographer and explain your concerns. When I contacted the department where I was treated about my experience I was told "we don't get complaints" (I wasn't making a formal complaint by the way!) if they don't know, they can't do anything about it. I hope you're okay.