Care Needs for Myloma Patient

Dear Roger Rabbit,

Thanks for getting in touch and welcome to the Online Community.  My name is Kelly and I’m one of the Cancer Information Nurses here at Macmillan Cancer Support.

It’s good to hear that you are feeling well at the moment but understandable that you want to make sure you are prepared if you should start to experience any symptoms.

There’s always lot of uncertainty after a diagnosis of cancer.  As you are aware it is possible to have myeloma, which is often regarded as a chronic condition meaning it may always be present, but not at a significant level where any treatment may be needed.  For many people there may be no change to this at all.

As we’re not directly involved with each person’s NHS care or have access to medical information, we are only able to offer general information and advice here.  It’s difficult for us to guide specifically on each person’s individual situation.

Your GP or a myeloma consultant at the hospital are best place to support with any questions or worries you have about what is likely to happen in the future.  They may be able to offer some guidance based on previous follow up appointments and tests they have done.  This includes questions about your life expectancy (prognosis)

Even a consultant may not be able to give definite answers to this.  They would also be focusing on any changes in symptoms or blood tests, such as normal blood levels and specific myeloma measurements, i.e. paraprotein and light chain measures.

Myeloma UK gives a detailed overview of symptoms to monitor for, which should be reported to your GP or consultant for further assessment if they arise. 

Not everyone with myeloma will experience all symptoms and the severity can be different.  This means it is difficult to speculate on how any would affect you specifically but good to be aware of.

If any symptoms were to occur it can be helpful to keep a diary of these.

Once again this makes it difficult to know exactly what level of care you may need in the long term.  Many people choose to remain at home and there are different types of support available to support with this.

 Although not relevant to your situation right now, our general information about the different  types of support available at home and care and support if you have an advanced cancer are good to be aware of.  They give a good overview of different healthcare professionals and other services available, who could become involved with any changes to your care needs at home.

Health professionals such as the GP, occupational therapists, district nurses, community palliative care teams and local adult social care services can help with co-ordinating assessments with care planning.  This includes for carers or any equipment at home which would help living at home easier. 

It’s difficult for us to guide if your late wife’s wheelchair would be suitable for you, but it would be good to speak to someone who could help you start to put in place appropriate planning for any future care needs.

So that this doesn’t become overwhelming it may help to write down all your medical and care questions.  The GP has a duty of care to support you with any decisions regarding your care or medical concerns.  It may be good for them to be aware of your thoughts about planning ahead.  They can make referrals to any health or social care professionals if needed.

You may also wish to think about advance care planning options to make sure that any wishes you have for your care are made known to your doctors and family alike.

Apologises if this is a lot of information.  If we have not been able to cover all of your questions here, it may help to talk over things with one of our supportive nurses on our phone helpline.  This would give us the opportunity to ask more questions to make sure we are offering you the best support.

I hope this has helped a little.  Please don’t hesitate to get back in touch as needed.

Take care,

Kelly

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: KA/MH