Part one of our two part series on living with dying
These conversations can be difficult to start. Palliative care, end of life, death are words that don’t form part of our day to day vernacular. But they are realities of the privilege we call life. And unfortunately they are words that many women with low-grade serous carcinoma hear. Long before they want to.
Which is why we felt it was important to have this discussion. As difficult and confronting as it may be to hear.
Diane is an experienced palliative care nurse. She was diagnosed with low-grade serous carcinoma in 2014. Which makes her uniquely qualified to start this talk. Because as, Diane outlines: palliative care, isn’t about death, it’s about living your best life.
Palliative Care and living with advanced Ovarian Cancer
There is not a rule book in the entire universe that can tell you how you should or shouldn’t cope when you are living with advanced and progressive Ovarian Cancer that is no longer curable. Every woman is different, every woman’s experience and perspective is different and each day brings new challenges and fluctuating emotions. For this reason, I would say that how any individual woman copes is absolutely right for them and I would remind them that they can only ever do their best and that is enough!
To begin with, the terminology surrounding this phase of disease is so confusing. When the disease changes from being curable to incurable but treatable what does this mean? It means that the disease is never going to go away but there are still treatment options to help stabilise the disease and to minimise the symptoms. The word Palliative Care springs to mind which is not only a huge part of my life from a professional point of view but is also now very personal to me. I am living with incurable advanced metastatic Ovarian Cancer that is described as Palliative and for many years I worked as a Palliative Care Clinical Nurse Specialist so I now know both sides of this story. I also benefit from the wisdom of the thousands of patients that I supported throughout my career, some of which I want to share with you.
My top tips for coping with advanced and progressive Ovarian Cancer are:
• Words matter! Hearing the words Palliative Care can be scary but it is very important to remember that this phase of the disease is not the same as end of life care/ terminal care, and that there are often still treatment options available to help with living life. You are not being written off! Palliative Care is the holistic care of people with advanced and progressive disease, which takes into account their whole selves i.e. their emotional, spiritual, physical and social wellbeing to help them to live with their disease and their loved ones to cope with the situation. I have embraced this stage of my disease with positivity because I know how amazingly supportive Palliative Care services are and I would encourage anyone struggling with life in this phase of their disease to seek the support of their local Palliative Care services. Often this is attached to Hospices, which in my experience are the absolute experts in what they do. Hospices have a range of services that will be available both as an outpatient and inpatient. They are not places that people just go in to die, they are more about helping people to live well with their disease throughout the palliative phase through to end of life care. I could write pages about Hospices and Palliative Care because that was my passion in life when I was able to work but what I truly want to say is that their support is second to none and it is never to be feared.
• 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 the same Ovarian Cancer type as mine because it helped me to know that I was never alone. Peer support is a two-way-thing and has been so important to me throughout my story. It’s not only enormously supportive for me but it also gives me a sense of purpose at times when being a support to others when they need it. Nobody can truly understand what it’s like to live with advanced Ovarian Cancer unless they are there themselves.
• 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. Try to incorporate activities in to your day that make your heart sing or bring joy to you. For me, there is nothing quite like connecting with the natural world to make you feel alive so being outdoors amongst nature is an important aspect of my life. Simple pleasures like the sun on my face or the wind in my hair, the sound of bird song suddenly feels so life affirming to me.
• 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. It is hardly surprising if you find yourself feeling powerless, sad, desperate, frightened, numb, hopeless and angry. These are all part of the grieving process and are to be expected. The emotions might come and go and can be cyclical in that you might think you’ve accepted the situation but something triggers you into feeling certain emotions again. This is usual and to be expected so cut yourself some slack and allow yourself to feel what you need to. Just don’t let your thoughts run away with you.
• Life is unpredictable and uncertain but finding an anchor is essential to stop yourself spiralling into a black hole of despair. When life feels out of control my anchors are breathing techniques and mindfulness which my wonderful counsellor taught me. Taking a breath in to a count of four, holding your breath for four and breathing out for a count of six for a minute helps me to regain a sense of control. Mindfulness is a bit of a buzz word and there are a few techniques to try but essentially it is a way of staying in the present moment and not thinking about anything but this moment in time. There is plenty of information around on mindfulness so I would recommend having a go. Having an anchor helps to regain a sense of control of the panic you can feel in what feels like an unpredictable and uncertain world.
• Make sure you ask the questions you need to in order to understand what is happening with your disease. Even if you have to ask many times until you understand, that is not a problem. Write down any questions to take with you to appointments if you need to.
• Keep a diary of symptoms. It is extremely difficult to describe any symptoms that are intermittent or complex and it is impossible to remember vital information such as how long the symptom lasted, how frequent, what helped to alleviate it, was it related to eating, location of pain etc. The more information you can give related to your symptoms the better your Doctor or Nurse Specialist can interpret and diagnose what is the cause in order to provide symptom control. Please don’t suffer in silence because these days there is so much available to help with controlling symptoms.
• Be bowel aware! Never have I discussed my bowel habit more in my life than lately. Ovarian Cancer does wreak havoc with the bowel at times and often it is bowel issues that cause most of the problems. Try to monitor any changes and act quickly if constipation occurs. Bowel obstruction is one of the most difficult complications with this disease and prevention is far better than cure. Drinking plenty of water and eating a regular balanced diet is key. At times I have been advised to have a low residue/fibre diet to help my bowel to cope so if this does trouble you it is important to ask for advice from your Gynae-Oncology or Palliative Care Nurse Specialist.
• 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.
• 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.
• Incorporate rest into your day if you need it. Listening to what your body tells you is vital and if you are fatigued there is no sense in pushing yourself to get through a day without some rest. Everyone who knows me will tell you that in the afternoons I often have a sleep. 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.
• If you do find fatigue is an issue for you try to pace yourself. It’s good to have a goal each day but even on a good day don’t push yourself to do more. There is no sense in exhausting yourself even if you think you could do more because it will take longer to recover and may even spoil plans for the following day. If you have a busy day such as hospital appointments etc on one day, make sure you plan an easier day to follow. Keeping active is really good for fatigue but so is knowing your limitations. If you can only manage a walk to the bottom of your garden or the end of your path that is just fine. Just make sure you keep moving each day.
• 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 essentials 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.
• 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 for and to have the death that I want.
• 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. You Gynae-Oncology or Palliative Care Nurse Specialist, or GP can help with more professional support when needed. The important things to remember is that cancer affects the whole family or friend’s network and they might not want to burden you with their emotions.
• When you have children around, whether that is your own children, Grandchildren, nieces, nephews etc 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 to what they see and hear which can sometimes be far scarier than the reality. Culturally we are not good at talking honestly with children but having time to involve them and prepare them for what is going to happen is a precious gift. Explaining to children that your 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 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.
I could write pages and pages about this subject but for now these are the main tips that I wanted to share with you. 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!
– Diane Evanswood, Palliative Care Nurse Specialist, living with advanced, recurrent low-grade serous ovarian cancer
Go to: Part 2 by Palliative Care Doctor Kathryn Mannix