Palliative Lung Cancer

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Hi my mum is palliative for lung cancer and I am just getting passed about pillar to post when trying to get help, she was given months diagnosis in July, her pain relief has been increased regularly since September, yesterday I rang the community palliative care team as she had had 6 doses of oramorph in less than 24 hours I was told as she has anticipatory medication in place they would come out and give her an injection of morphine, I had to nip out to take my daughter to physio n they rang me and said because she can swallow they won’t give it her and to get on to The GP! The same nurse also left a full strip of Zomorph tablets on the fireplace bottom when mum has small children that visit aswell. 
I feel because mums wishes are to stay at home till the end we are just being left, I ring the hospice they say I need to use community palliative care more I ring them and they send me to The GP, we have has no information or support with what to expect apart from mums Lung Cancer specialist nurse from the hospital who is an absolute angel, but because she’s been passed over to palliative care then I can’t reach out to her much really as mum is no treatment. I just want my mum to be comfortable and not suffering as she is right now, she is declining all the time she’s barely eating and drinking, sleeping more than she is awake, she’s starting to have accidents but we don’t know what should be alarming or anything 

  • Dear LisaB2309

    My name is Sarah, and I’m one of the cancer information nurse specialists on the Macmillan support line.  

    I am sorry to hear that your mum is getting passed from pillar to post when trying to get help, this is far from ideal when your mum needs support to be comfortable at home. This sounds a difficult and upsetting time for you all.

    I am pleased to hear that your mum’s lung cancer specialist nurse has been an absolute angel but difficult as now your mum’s main support should be the community palliative care team.

    Anticipatory medications are usually used to manage distressing symptoms when someone is coming to the end of life and unable to take medication orally. In some cases, they can be used to also manage breakthrough pain. To get a clearer understanding of what you can expect from your mum’s community team, it may be helpful to ask to speak with a palliative care manager. You can also share your experiences including the worries you have with medication being left out when young children may visit.

    Keep a record, if you are not already, of how much oramorph your mum is taking as she may need an increase in the dose of her regular morphine tablets or something different to manage her pain. This is something that the community palliative care team should be managing. If you need to, you can contact your mum’s GP for support with this as both professionals should work together to manage your mum’s symptoms.

    If you are struggling to get the support you need over this weekend, you can contact NHS 111 for support.

    You may also find it helpful to get in touch with our support line to talk things through with one of our nurses. It can help by explaining in more detail symptoms which you are concerned about such as your mum having accidents.

    If you need practical support with caring for mum, the local council can provide carers and your mum’s GP, or palliative care teams are all able to organise this urgently.

    Your mum may also be eligible for NHS Continuing Healthcare funding.

    There may also be Marie Curie nurses and care assistants available locally for help with end of life care, particularly during some evenings and nights. Your mum’s GP or district nurse, can make a referral to them. Please note, this service is not available everywhere in the UK.

    Looking after someone at receiving palliative care can be both physically and emotionally demanding. Please try to look after your emotional and physical well-being.

    Often talking to others going through a similar experience can be helpful too. There is nothing quite like the support that you can get from others who know what it’s like.  You may find it helpful to join our online community group for people who are  looking after someone whose cancer can’t be cured.

    I hope this information helps. Please feel free to get back in touch if you want more information or support.

    Best wishes,

    Sarah

    Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    Ref/ SS/AT

    Sarah S-Macmillan Cancer Information Nurse Specialist