Palliative care

My mum has recently (8 weeks ago) been diagnosed with throat cancer stage 4. She has opted for palliative radiotherapy. She says she does not want to go through full curative treatment due to her age and other health conditions. I know she has made the right decision for her, and as difficult as it is, I do support her completely. 

She has had 3 sessions and has 3 more. I know that its very hard to predict what will happen, but im really struggling with the not knowing.

She is struggling more with pain and swallowing over the last 2 weeks but is managing very well.

I feel like all the staff we meet are so kind and caring, but I do feel the service is quite uncoordinated. 

I am worried about who will be co-ordinating her care after her last radiotherapy session. Who will we be expected to contact for help with symptom management, emotional and psychological support etc?

Who has the conversations with mum about CPR and end of life care/wishes?

I know palliative care will be needed, who makes that referral and when should it be made.

I know she doesnt want to die in a hospice or hospital, she wants to be at home. Will we have support in this?

Feel very overwhelmed and afraid at the moment.

  • Hi there and thanks for posting

    I am sorry to hear about your mum and appreciate you having lots of questions about the future.

    For now as she is having radiotherapy the oncology team are the first point of contact and it is important she mentions any pain and discomfort she is experiencing during treatment. Just to say that often with radiotherapy it will cause side effects that can continue for a few weeks after treatment finishes but then should start to improve.

    Do ask the radiotherapy nurses to also refer your mum to a Macmillan nurse if they haven't done so already.

    Macmillan Nurses are there to support both the patient and their loved ones throughout their cancer journey and not just the end of life. At first they may not be involved a great deal but as time moves on and a cancer progresses they can become more involved and also refer to other services as needed.

    The oncology team may still continue to monitor your mum and her condition but if they think she would benefit from being transferred to the care of the palliative care team they can arrange this.

    Palliative care consists of both doctors and nurses who help manage symptoms and aim to keep patients as comfortable as possible. They are often hospital, hospice and community based depending on where the patient is residing at the time.

    If a patient is at home the GP will also be a point of contact for patients to ensure any medications needed are prescribed and also can liaise with other members of the health care team needed.

    There is information about support at home for you and your family on the website that talks about community services that patient may need at some point of their cancer journey.

    End of life care and other practicalities such as CPR status and where the patient would ideally like to be at the end usually is talked through by the palliative care nurses and doctors at the appropriate time.

    I appreciate how unsettling this all must be but it is really important to try and take things one step at a time. No one can really say what the future holds I'm afraid but it is good to be prepared and make sure everything that needs to be in place is sorted out.

    Do get back if you have more questions or if you prefer give us a call on 0808 800 4040, we're here weekdays 9-5.

    Wishing you mum all the best with the rest of her treatment.

    Take care,

    Naomi