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Feeling helpless

Started by Anonymous on 11 December 2017 at 23:55

Hi Everyone, several weeks ago I would have never thought I would be here telling my story. For the past 10 years I’ve been caring for my mum who was diagnosed with dementia in 2006, on 24/10/2017 we found out that she had a tumour on her vocal cords - she is 96 years of age - I know!! I was told that she would need to have de-bulking surgery to free her airways and this was scheduled for the 10/11/17, unfortunately the surgery had to be postponed because she was rushed into A&E on 3/11/17 with pneumonia and sepsis and hospitalised for 2 weeks, god bless her she got over this and surgery was undertaken on 22/11/17 and she has got through that as well. I have now been told that the cancer had not spread and that radiotherapy potentially could cure it BUT they feel she should not have treatment as the side effects she may not be able to tolerate basically treatment has been refused and they say it may be possible for future de-bulking surgery which carries the risks associated with general anestetico and may not even be possible - I know that mum If she had the capacity would want the radiotherapy but due to her dementia she is unable to put her point across - I have LPA for her health and welfare but the consultant did not seem interested it seemed like he had made his mind up and that was that. We left the appointment feeling powerless and feeling that the decision not to treat is more to do with ageist views and beliefs - mum is a life long non smoker and drinker and has always been a fighter despite her overcoming sepsis, pneumonia and de- bulking surgery all within 4 weeks they are not willing to give her a chance - I am seeking a second opinion - whilst I know she is of a grand age and there are many young people affected by cancer should she not be given a chance or am I being totally unrealistic ? Is there any one else out there who has experienced similar or knows of anyone who has had treatment around my mum’s age and got through it ? Any advice would be greatly appreciated thank you

Comments (1)

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  • Picture of SusieQ
    From SusieQ  
    12 December 2017 at 09:35
    Edited on: 12 December 2017 at 09:36

    Hello,

    As the daughter of an elderly parent (90), I truly empathise with your feelings today. You know your mum well, and have seen her get through sepsis, and surgery.

    The decision not to give radiotherapy may sound really harsh, and I dont know all the in's and out's of your mum's particular case. However, I wonder, rather than the decision not to treat being ageist - it is more a compassionate reason that the treatment has been declined.

    Head and neck cancer radiotherapy is very intensive, - four to six weeks - with the potential for severe side effects. Having just got through sepsis, and surgery, it would be quite risky. There is the potential for dehydration, swallowing problems, and discomfort.

    It sounds as though the rationale behind the decision was not explained - and you and the family were left feeling your mum was being abandoned. The second opinion may still be similar to what you've been told. However, hopefully it will give you the chance to be heard...and not be treated as if your mum isnt important. For she surely is...

    Ethically, the dilemma for doctors when someone has dementia, is that they have to think in the best interests of the patient. They will weigh up several factors, her current health, her quality of life, possibly her age, but that is less of a factor - they go by the person's physical health/any co-existing health problems, etc.

    It sounds as though you're doing the right thing, asking for another opinion. This can help you know you've done the very best for your mum - and checked out that the reasons for the radiotherapy not be given.

    I'll be in touch by personal message, as this sounds a difficult time for you, after the stress of recent events, and this current dilemma.

    Warm wishes

    Sue

     


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