Coordinated support for my Dad?

Hello Andy 

Thanks for getting in touch and welcome to the Online Community. I’m Debbie, one of the Cancer Information Nurse Specialists on the Macmillan Support Line. I am sorry to hear that your Dad has cancer and can understand your need for information at this time.

From your message it looks as though your Dad has a type of kidney cancer called renal cell carcinoma (RCC) that has spread. You mention that he also has MPN (myeloproliferative neoplasm), which is the name for a group of blood disorders that affect how the body produces red blood cells, white blood cells, and platelets.

I can understand that it can be confusing to know who should be coordinating your Dad’s care when he has different medical conditions. In the cancer treatment team (urology or oncology team) there might be a clinical nurse specialist. Clinical nurse specialists (CNSs) work as part of the treatment team and are usually a patient’s main contact at the hospital (key worker). They can give information about the type of cancer, treatment options, and how to manage any symptoms or side effects. They can also give your Dad and your family practical and emotional support. Your Dad can ask his doctor if there is a nurse specialist he can talk to. The haematology team treating your Dad’s MPN might also have a clinical nurse specialist.

When your Dad is at home his GP is responsible for his care and can organise district nurses to visit and assess him if he needs any nursing care.

We have helpful information about the different services that can support someone with cancer that has spread (advanced cancer).

I hope that this information helps you to get the support that your Dad needs. Please feel welcome to contact us again if you have further questions. 

With best wishes 

Debbie C – Macmillan 

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 email us.  

Ref/ JD

Hi Debbie, apologies for the delay and appreciate all the info. What my Dad needs, and maybe more so my Mum, is someone t9 come and sit on their sofa and talk with them. This not really about the direct medical stuff more support. How do I get that to happen? Thanks Andy

Hi Andy B,

Thanks for getting back in touch.

I can appreciate your wish to try and arrange some emotional support for your parents at home. This sounds like a difficult time for the whole family.

I wonder whether your parents may benefit from the support of the community palliative care team. Palliative care nurses, also called Macmillan nurses, are experienced in providing emotional support and practical advice, as well as assessing and managing cancer symptoms, at home.

If this is the kind of support you feel your parents would benefit from, and if they agree, you should speak to your Dad’s hospital team or GP. If they feel this is appropriate a referral can be made to the palliative care team.

There are also a number of ways that we here at Macmillan can offer emotional help to your parents and yourself.

Further information and support can be found through our online community, especially the family and friends  and emotional support forums.

If you have any further questions, please don’t hesitate to get back in touch. You can speak with the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

Best wishes,

Jo

Cancer Information Nurse Specialist

Ref/RH