Breast cancer - radiotherapy

[DilemmaDelilah]

I have breast cancer. I had to stop chemotherapy after the first cycle as it made me so ill. I have had to go from combined immunotherapy to just herceptin as the combined therapy made me ill. By the time I had surgery the original lump was 60mm, there was skin involvement and spread to my lymph nodes, so I had to have a full mastectomy and 22 lymph nodes removed and I have an impressive scar and it was very painful. I have quite a large area with no feeling, conversely I had excruciating nerve pain in my upper arm for about a month. That has, thank goodness, stopped now!
I am just giving you this background information so you know that I haven't been very lucky.
I have recently finished radiotherapy - I have developed radiation dermatitis which has progressed to moist desquamation and which looks like it is going to get worse judging by the changing colour of my skin. So far I have only had one real emotional blip - I am taking each day as it comes - but the pain of the changes to my chest skin and the difficulty in sleeping as I have to lie in my back so that I can keep the dressing in place (I am normally a side sleeper), plus the unrelenting itching, is really getting me down. I'm not sure how much longer I'm going to be able to cope with this. I have special dressings and hydrocortisone ointment (for the areas where the skin is still intact) - I'm taking antihistamines and paracetamol.
Has anyone else been through this? And do you have any coping strategies? I am already seeing a counsellor. My (lovely) family keep telling me how amazing and strong I'm being and how impressed they are with how I'm dealing with everything - but I'm not strong and I don't want to deal with everything.
Has anyone got any helpful tips?

I’m so sorry you are going through this. I remember the itching well, I didn’t have radiotherapy but did have full mastectomy and node removal. The pain, numbness and itching nearly sent me demented, but also made me anxious and very down.

You are probably in the hardest part now, the immediate recovery- took me about a year to feel physically better. The good thing about the itching is it signals healing. I would suggest plenty of distraction, get your headphones in and listen to;
audio books,
guided meditation,
soothing sleep sounds

Also are you having physio? Finding myself a physio who specialised in breast cancer recovery was a game changer for me (I did have to pay though).

Sorry you've had such a rough time. I've also had breast cancer. Luckily, my skin wasn't too bad after radiotherapy. I had a number to call of someone in the radiotherapy department if I had a bad reaction. I see you're already using creams etc bit perhaps call them?
Emotional support, have you a Macmillan service at your hospital? The information manager at my local hospital was great. They can signpost you to useful services in your area as well as things they do.
Maggies have centres in some hospitals who offer a variety of services. Future Dreams are a charity who offer various things for breast cancer patients, they have a house by King's Cross Station if you're London based. Otherwise, they do have some online things you could join in.
The general health board on here has ongoing threads for people going through cancer treatment, it's know as the friendliest thread. Let me see if I can copy the link.

https://www.mumsnet.com/talk/general_health/4929203-cancer-support-thread-91-dont-borrow-tomorrows-worries?page=26
This is the link to the latest thread. I found previous ones brilliantly supportive. Feel free to rant, swear, say things you would never say in public.

Thank you all. I have had great support from the Radiotherapy department and have been able to drop in for advice, and that is where I have got the dressings etc. I have a phone call booked in for Thursday but may pop in on Tuesday when I am going to be in the hospital anyway if it gets much worse before then.
I will check out that other thread.