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Littlebrooky
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My brother has had myeloma, for 13 year, his light chain have risen in the last 5 month's from 200, to 780, he has commenced on chemo, cyclophosphamide, steroids and anti virals antibiotic's and anti fungal

He has been told this is palliative, what can I expect as his only carer and how can I support him, also ensure I can get support too.

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    i should also add he hsa heart failure and renal function 18

  • Hello Littlebrooky and thanks for your post,

    I am sorry to hear about your brother. This must be hard for you as the primary carer.

    It maybe helpful to visit your GP to see what help and support your brother may be able to get whilst he is at home.

    CancerCare Map is a simple online resource that may also help you find what support may be available in your area.

    You need to be slightly dictated by your brother. Depending how he is feeling and whether he is having any symptoms the aim in the community is to try and manage any side effects from the myeloma and to make him as comfortable as possible.

    Your brother may have access to a palliative care nurse who can help support you and your brother.

    MyelomaUK have produced an info pack with some help on planning ahead which you may find helpful to look at with your brother.

    We have some information on our website about coping with myeloma

    Macmillan have some information about being a carer which you may find helpful to look at.

    It is important that you look after yourself whilst caring for your brother. Giving yourself breaks and if there are friends and family then trying to get support from them.

    Further down the line Macmillan have produced some information about what will happen in the last few weeks of life but this may not happen for a while.

    You and your brother are welcome to ring and chat through any of this with the helpline nurses. The nurses are here Monday to Friday 9 am to 5 pm and the number is Freephone 808 800 4040.

    All the best,

    Catherine

  • Offline in reply to CRUK Nurse Catherine

    Hi

    I thank you for the information, however I fear it is me who probably needs the support, I do feel my brother who  has had 3 treatment pathways and survived with a good quality of life. He had a cardiac arrest 2 1/2 yrs ago and was resuscitated, and his last couple of years have been very difficult, his quality of life has been reduced, he think he is a survivor and this is just another treatment with I feel he thinks has good outcomes. I struggled following his 6 month in hospital following his cardiac arrest and the disregard other specialists, attitude to his myeloma. I had other family issues my son in-law who had laryngectomy and intensive radiotherapy, I took him for his treatment, and tried to support my daughter, he struggled with his body and inability to carry out his job (joiner). My husband retired. I had a breast scare and generally low in mood. I therefore fear the fact that my brother will continue to think I can and will do all his support.I have great friends, and his neighbor is very good.

    It's helped to just write this down, I am sure as in everything in life things always work out ok! Ta  

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