Palliative Care: the holistic care of people with advanced and progressive disease

Diane Evans-Wood was working as a Palliative Care Nurse Specialist when she was diagnosed with ovarian cancer. She shares her professional tips and personal insights on palliative care and living with incurable ovarian cancer.  

Palliative Care is not end-of-life care, it is the holistic care of people with advanced and progressive disease. It takes into account their whole selves i.e. their emotional, spiritual, physical, and social wellbeing. Often this is attached to hospices, which have a range of services that will be available both as an outpatient and inpatient. 

1. Remember that you are not alone. I and many others are going through a similar situation to yours. I chose to seek out other women with ovarian cancer because it helped me to know that I was never alone. Being a support to others also gives me a sense of purpose.
   
2. Be kind to yourself. You can’t be expected to carry on like normal when you are going through emotional, physical, or spiritual distress. Cry if you want to but don’t spend all your days shedding tears because life is for living and you are about much more than a disease like ovarian cancer. 
   
3. Ask for professional support if you are struggling to find any meaning in your life or to accept what is happening to you. You will find yourself going through many different emotions that may come and go. Cut yourself some slack and allow yourself to feel what you need to. Just don’t let your thoughts run away with you. 
   
4. Practice mindfulness to regain a sense of control. Breathe into a count of four, hold your breath for four more seconds then breathe out for six. Mindfulness is a way of staying in the present moment and not thinking about anything but this moment in time.
   
5. Make sure you ask the questions you need to understand what is happening with your disease. Write down any questions to take with you to appointments and keep a diary of any symptoms you may want to flag. If you can clearly explain how long a symptom has lasted, how frequently it occurs, what helped to alleviate it, whether it is related to eating, location of pain, etc., the better the medical professionals can interpret and diagnose the cause to provide symptom control. Don’t suffer in silence.

1. Keep a list of current medications with you so that when you are asked you have the name, dose, and frequency of the medications you are taking. It is very easy to forget what you take in times of stress. Include non-prescribed medication too including CBD oil and other complementary treatments that you might use. 
   

7. Keep a summary of your medical history with you. It makes it so much easier when you are asked questions related to your health in an emergency situation or when meeting new health professionals.

8. Incorporate rest into your day if you need it. Cancer fatigue is not the same as the tiredness that well people feel. Cancer fatigue is a deep, profound fatigue that affects your whole body and means you really cannot function unless you rest. 

9. Write a list of important phone numbers so you have them to hand. Contact numbers for your GP, Palliative Care Nurse Specialist, Gynae-  Oncology Nurse Specialist and out-of-hours GP are essential but include all those involved in your care that you might need someone to call on your behalf. Having them all on your mobile phone isn’t always the best idea because others might not be able to access them if you are taken ill.

10. Plan your care. I have thought through what I would like to happen and where I would like to be cared for when I am approaching the end of my life. It is not something I want to think about but I would rather have time to think this through and look at my options than leave it until I am in that situation. Your Palliative Care Nurse Specialist, GP, or Gynae-Oncology Nurse Specialist can help with this and talk through what you need to think about. Although I have written out my care plan, I know I can change my mind about any of it if I wish. I have even thought through what personal items I want to gift to my loved ones and written down my funeral wishes. This is not because I think I am going to die soon but more because I have the most wonderful opportunity to plan and have the death that I want.

11. This is a very difficult time for your loved ones too. There is support for them so if they are struggling let them know it is OK to talk to someone. Your Gynae-Oncology or Palliative Care Nurse Specialist, or GP can help with more professional support when needed.

12. When you have children around, it is important to involve them and to talk to them about what is happening. Children pick up on emotions and will draw their own conclusions from what they see and hear which can sometimes be far scarier than reality. Explaining to children that their cancer is not going away but is treatable opens up opportunities for them to ask questions, especially if they have noticed and been worried about what is going on but have not had an opportunity to voice their concerns. There is support for you in talking to children if you feel you need it and your Gynae-Nurse or Palliative Care Nurse Specialist can help with this.

Above all else please embrace life as much as you can because ovarian cancer takes so much from us but it cannot take away our zest for life. We are still us and cancer is not our whole story! 

Ovacome provides free support for anyone affected by ovarian cancer. Maggie's Centres offers free practical, emotional and social support to people with cancer, their families, and friends.