This talk will cover. Dealing with pain and mind/memory problems

Transcription

1 This talk will cover Dealing with pain and mind/memory problems Kerry McKay Lead Haematology Clinical Nurse Specialist Plymouth Hospitals NHS Trust Two complications of myeloma and/or side-effects of its treatment: Pain Mind and memory problems How these can be treated and managed 1

2 Three take home messages Side-effects and complications 1. Myeloma and its treatments can cause a number of complications and side-effects 2. Be aware of these, look out for them and report them to your doctor or nurse 3. They can sometimes be prevented, and can be managed and treated so that they have less of an impact on quality of life 2

3 Pain Top 5 causes of pain in myeloma A constant daily grind. Limiting me physically at work and in social terms. You learn to cope but it s hard for other people to really understand what you feel. Vote: Q: Has myelomarelated pain affected you? 3

4 How pain can affect you Pain management Pain affects up to 80% of patients at some point during the course of their myeloma. physical effects 100% 100% psychological & 55% emotional effects 60% social effects My pain is constant and unrelenting it gives a feeling of isolation that no one apart from me and my husband can understand. It s a daily battle to keep focused Results from a 2017 Myeloma UK patient survey 4

5 Non-medical treatment Living with pain Take each day as it comes because every day is different. Feeling positive helps! 5

6 Patient tips Get a really comfortable mattress if you are suffering back and rib pain. Try orthotic insoles to relieve peripheral neuropathy. Seek support from as many places as possible. Hospice outpatient teams can be very helpful and also open up opportunities for complementary therapies. Tips from 2017 survey of patients about pain Mind/memory problems Vote: Q: Have you been affected by mind or memory problems? 6

7 Chemo brain The dreaded dex A general fogginess, feeling out of sorts, struggling to remember words - usually due to the effects of treatment Fatigue, infection, stress and anxiety can make things worse Steroids can cause some troublesome neuropsychiatric side-effects irritability psychosis mania euphoria agitation panic mood swings anxiety insomnia depression distractibility delirium memory loss 7

8 Managing dex Report dex side-effects promptly to doctor or nurse doses can be lowered and/or frequency adjusted Try relaxation, meditation or visualisation techniques Take dex in the morning to reduce insomnia Mind/memory problems self help Write important details down - use post-its, a notepad or noticeboard Put everything in a diary or wall calendar Set alarms and reminders on your phone Take gentle exercise Do mental exercises like puzzles and crosswords Take time in the evening to reflect and process the day Rest well 8

9 Patient tips Try to prepare for your dex days. Take a long walk to tire yourself out, have a paper to read or a programme to watch is you wake and can t get back to sleep. I decided the best plan was to stop apologising for my unusual behaviour, move on and understand it was just part of the reaction to the drugs. This talk has covered Pain Mind and memory problems How these can be treated and managed Please ask any questions about other complications and side-effects in this afternoon s Ask the Expert session Tips from patients featured in Myeloma Matters. 9

10 Patient hints and tips Three take home messages Don t waste time and energy on things you can t do anymore. There are still lots of things you can do. 1. Myeloma and its treatments can cause a number of complications and side-effects 2. Be aware of these, look out for them and report them to your doctor or nurse 3. They can sometimes be prevented, and can be managed and treated so that they have less of an impact on quality of life Tips from The small things that make all the difference book 10

11 Myeloma UK resources Thank you Myeloma & Me video Roger s Story - Dealing with pain Any questions? 11

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