There’s nothing you can do to change the diagnosis, but reliable information and emotional support can make all the difference.
If your loved one has been recently diagnosed with a myeloproliferative neoplasm (MPN) you might be coping with many feelings. You may feel afraid of losing your loved one and wondering what is ahead. You may feel emotionally drained with caring for someone who is unwell and unable to do much for him or herself. You may feel guilty at not being able to understand or do enough. And maybe you have a job and a family to take care of too.
Tips when caring for someone
Learn about MPNs
One of the most useful and empowering things that you can do is to educate yourself on MPNs and the treatments, side effects and self-care suggestions available. Please use this website as a resource to learn about MPNs and about treatments.
Take care of yourself
It can be difficult, exhausting and socially isolating to care for a loved one with a chronic illness. It is essential to take good care of yourself as well as your partner, parent or child. Plan breaks when you can rest and enjoy activities with friends. Think about ways in which others can support you, and ask for help. Take care of yourself physically by eating a nutritious diet, getting some exercise (perhaps a 30 minute walk daily), reducing stress and ensuring that you have regular medical check-ups.
Attend a forum
Even if your partner or loved one does not feel well enough to attend a forum. Family members often find it very beneficial to attend these patient support events. You can learn about the treatments, ways to feel better and the latest news on drug trials. You can meet medical professionals, people with MPNs and their families who share the same concerns as you. MPNs are rare, so these events are great opportunities to meet others who really understand what you are going through.
Advocate for your loved one
Research shows that patients thrive better when a loving family member is there to look after them physically and provide psychological support. There are many ways to advocate for a loved one, these include:
- Attending doctor’s appointments together
- Taking notes or asking questions
- Researching treatment options
- Asking for more information at clinic about treatment alternatives or drug trials
- Ask for help in resolving problems with side effects
Make a plan
If the person you are caring for is unwell, it can be reassuring to everyone to talk over plans for the future, including making a will and deciding how your loved one would like to die. These can seem like difficult discussions, but it is often a relief when difficult issues can be opened for discussion.
Be your own expert
Partners can take the initiative in organizing and planning the right medical care plan care including palliative care that primarily addresses the patient’s comfort and quality of life. If your partner is experiencing pain, fatigue, shortness of breath or other problems that erode his or her quality of life, don’t wait for help – ask for assistance from your haematologist, GP or specialist nurse. You may need to take the lead in solving problems at home. Keeping a log can help you track the problems so that you can provide detailed information to your partner’s medical team.
Join the quest for a cure
Many people who are helping someone with an MPN feel somewhat powerless – but have found that raising funds for a cure is a great way to take action and bring back a sense of doing something. Please get in touch if you think you’d like to help – email us at fundraising@mpnvoice.org.uk.
