Cerebral Palsy
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Experience of radiotherapy and CP

maryemarye Member Posts: 14 Connected
edited February 2020 in Cerebral Palsy
Hello to all. I am a 69 yr old lady with lifelong Cp. I will shortly be starting radiotherapy for breast cancer. Has anyone any experience of this?
I am worried about staying still long enough on the table for the treatment because of spasms. I also have a frozen shoulder on the affected side and I am unable to lift it up. 
Any help you can offer would be appreciated. Mary

Replies

  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    edited January 2020
    Hi @marye
    I'm really sorry to read that you are going through this. I had cancer in 2010 and underwent 8 months of intense chemotherapy. 
    It affected my CP quite a lot, mainly tiredness and weakness and we all know how much energy we need to move!
    I would suggest discussing your concerns with your oncologist and radiographer. You could also ask your G.P. to raise the issue for you as well. Here is some information about planning your external radiotherapy treatment from Cancer U.K. I hope it is useful.
    Please keep in touch.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @marye, I'm sorry to hear that you are having to go through radiotherapy. I really hope it goes okay and please check in if you need to. 
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  • maryemarye Member Posts: 14 Connected
    Thank you Richard and Chloe for your messages.  I have had a ct scan in prepartion for the radiotherapy and have been laid in a position that was just about tolerable for my arm. The staff at hospital were very kind and considerate. My strategy is to take 4 cocodamol before I go and hope they will make me dozy and relaxed for the actual radiotherapy. The things we have to do eh!  :)
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I'm so glad they were understanding @marye! I really hope the people who do the radiotherapy are just as understanding.
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  • BrightsidebecsBrightsidebecs Member, Scope Volunteer Posts: 88 Pioneering
    Hi @marye I’m really sorry to here this please check in with me if you need anything I’m a trainee counsellor to i am an extremely good listener etc. 

    Take Care of yourself.
    Rebecca 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @marye, how are things going? :)
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  • maryemarye Member Posts: 14 Connected
    Thanks for your message. I havè had 6 sessions of radiotherapy now but not without problems. The first try was abandoned as my spasms were bad as I could not hold the uncomfortable position without moving so there was a risk of burns to the wrong tissues. The doctor perscribed a strong anti seizure drug which knocked me out completely and was much too strong. I am now on diazepan taken before the session and have discovered myself that sunglasses and earplugs help. They deaden my senses a little but it still takes a lot of energy to stay still. I wish there had been more help before I started this. The staff at the hospital try their best but they have very little experience of cp and needs for radiotherapy. 
    From Mary
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    I'm sorry to read that it has been so problematic Mary. Did your G.P. not write to the Radiotherapy department to highlight some of the potential issues around you CP?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @marye, I'm sorry to hear the problems you have faced and that they have limited knowledge. I hope the sunglasses and earplugs continue to help! 
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  • BrightsidebecsBrightsidebecs Member, Scope Volunteer Posts: 88 Pioneering
    I’m so sorry to hear that you’re having these problems it is utter disgraceful that people with disabilities are not thought about when it comes to such vital treatment like you are having. Something definitely needs to be done to ensure you and other cancer patients with disabilities have the same access to treatment as able bodied people do with any barriers in the way! Hope the sunglasses and earplugs continue to help you. 
    Rebecca 
  • maryemarye Member Posts: 14 Connected
    Thank you for your comment. I am half way through the treatment now so the end is in sight. . Mary
  • BrightsidebecsBrightsidebecs Member, Scope Volunteer Posts: 88 Pioneering
    you are very welcome, hope everything goes well now you can see the end of your treatment. Please let us know how you are getting on. 😊 
    Rebecca 
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