Hi @NJM,
I am so sorry that you have been through so much already. I had a mastectomy and 8 nodes removed back in 2013. My drain did not work so I also had a huge build up of fluid which had to be drained every few days. My chemo started 3 weeks after my surgery. I still had a lot of soreness and fluid build up which continued to need draining by the surgeon even after chemo started.
I found a wonderful local lymphoedema physiotherapist who started massaging the area at about the 4 week post surgery point. This helped to reduce the fluid and ease my pain. This also helped me to be able to do the exercises more effectively. Maybe you could ask your surgeon or breast care nurse if you have one, if there is a physio or someone they could recommend to help you with your shoulder and arm. It is important to do the exercises to regain proper movement and also so you are in less pain but it sounds as though you might need assistance with this due to your shoulder issue.
In my experience you need to let your doctors know your concerns. Especially when you start chemo. Keep a record of any side effects and most of the time there is something they can do to reduce these. This network and the wonderful ladies on here will also be extremely helpful with practical advice about most things. I hope that your pain reduces soon, but I think a physio would be able to help with this. Take care and let us know how you go. Deanne xxx