Thank you to Diane Evans-Wood for sharing her experience of living with ovarian cancer at Christmas.
Below Diane outlines what you might expect at Christmas and some ideas for how to make it more manageable, while living with ovarian cancer.
It’s November and that time of year again when the Christmas adverts appear on TV and the shops are well and truly stocking up for Christmas. I’m sure we all mostly take it for granted that Christmas will keep coming around for us all and don’t consider a time when perhaps we won’t be here. However, life is more fragile for some at the moment, and for many, this time of year is tinged with sadness, fear and anxiety.
What if you or a loved one has cancer or another serious or life-limiting illness? What if you feel too ill to even contemplate Christmas? What if you are facing the possibility that this is your last Christmas? What if you don’t even know if you’ll be here for Christmas? Of course, none of us should take for granted that we will be here this time next year, but for some, one of those scenarios above is very real right now, and Christmas is creating a sense of dread.
I live with that uncertainty because I have metastatic ovarian cancer, and although I’m stable again now, previous years were a different story. I have had five Christmases with cancer so far, and each one has felt very different and dependent upon what was going on about my disease. During Christmas, whilst having chemotherapy, I struggled with organising our usual festivities because of energy levels and chemo side effects, so everything was kept very low-key. My hair started to fall out on Boxing Day that year, and by New Year, my poor dreadlocks were hanging on by a few hair strands. My husband shaved my head and his own on New Year’s Eve, so we started 2015 with bald heads.
A couple of Christmases ago, I was very poorly with the flu and confined to bed by Christmas Eve. I was utterly heartbroken because I was not able to have my son stay with us, so I spent much of that festive season feeling desperately sad and crying; this was the first Christmas that I had ever had without my son, and all I could think of was that if my time was short, I wanted to spend as much time with him as possible. The realisation that possibly the last Christmas I could share with my son wasn’t going to happen left me devastated beyond belief. I’d bought lots of extra satsumas as usual because my son loves them so much, and one of my vivid memories of last year was that every time I went into the kitchen, I broke down when I saw the bowl of uneaten fruit. I just can’t explain how bereft and sad I felt that year.
Last Christmas was also very difficult because of the news I had received shortly before that my cancer was now metastatic and spread into my chest. I felt very emotional for much of the time and kept asking myself whether this would be the last time I’d buy presents for my close family; would it be the last time I’d cook Christmas dinner, the last time I’d watch my son open his presents, the last time I’d buy my husband and son’s favourite foods. It felt surreal, and throughout the two days, I would cry silently in the kitchen or bathroom to myself so as not to spoil everyone else’s Christmas.
I looked at my reflection in the bathroom mirror in disbelief that this was happening to me. I was torn between wanting to savour every moment with joy and screaming inside that this is just not fair. The smallest of things brought tears to my eyes, and for most of the time last Christmas I had a big, painful lump in my throat through holding in the emotion. My husband was feeling it too, so there were a fair few times when we both just hugged with tears flowing, but for the best part of Christmas, it was a case of trying to push it to the back of our minds. Then along comes the New Year where, without fail, I wonder if this will be the year that I will die. I do not doubt that this year will be the same, and on New Year’s Eve, I’ll be asking the same question.
Top tips for coping at Christmas
Through the experiences I have had myself, both personally and professionally as a Palliative Care CNS, I wanted to share with you what I have learned along the way, as I know there are plenty of others out there who are facing the uncertainty of this being their last Christmas.
Firstly, before I move on, I want to put things into perspective by telling you that Christmas is just a few days in a year and although this time is deemed to be special and steeped in tradition for many families, it is still only another day or so in the grand scheme of life. Every day is special when living with a life-limiting illness such as cancer, and I think it’s worth remembering that when we feel emotionally drained through trying to create a perfect Christmas or New Year. When all is said and done, these are just another day!
For many of us, our family traditions, such as Christmas, seem to hold us together but if those traditions are simply not achievable maybe you could try to create new ones that are more achievable in your circumstances. The heart and essence of Christmas are meant to be about sharing, caring and celebrating so keeping it simple and basic is just as beautiful, if not more so than creating exhaustion, extravagance and expense. Decide which parts of your Christmas traditions are important to your family, and focus on those. You never know, the changes you make might become new family traditions that live on forever.
Whether it is you facing the prospect of your last Christmas or a loved one, it is understandable that you will find Christmas overwhelming and incredibly emotional. Don’t hide your feelings away too much, as it is important to express what is going on in your head as opposed to holding it all inside. What you are experiencing is known as ‘anticipatory grief’, whereby you feel different emotions similar to bereavement. Rather than having a scenario of tears alone in the kitchen or bathroom or watching someone rushing into another room to cry and returning with reddened eyes, acknowledge the elephant in the room. Once feelings and emotions are shared and acknowledged, it reduces the stress and sadness that undoubtedly everyone will be feeling, and it allows everyone to share in the support for each other.
Christmas is not just confined to one day, so don’t try cramming it all into twenty-four hours. Plan visits to or from loved ones ahead of time so that it spaces out the festivities to a more manageable ‘itinerary’ for you. Remember to set boundaries though, regarding length of visit times, numbers etc, or you could become overwhelmed.
Your family could bring food to share rather than you cooking for them, especially if you are too weak to cook a meal you cannot eat for one reason or another or maybe your main carer is already exhausted and overwrought.
If someone else is cooking the Christmas dinner, let them know what you feel you could eat and explain what amount of food you feel you could manage; if you could only manage a few potatoes and gravy or just a pudding, then so be it. Facing a large plate full of food can be overwhelming, so don’t feel that you should force yourself to eat a larger meal than you’re capable of eating to avoid offending the cook. Explain beforehand what you want on your plate, and you are more likely to enjoy it.
For some, food can be a real issue at this time, particularly if there are swallowing difficulties, bowel obstruction, breathlessness, loss of appetite, ascites or nausea. There is no reason why you can’t retire to have a rest away from everyone whilst they are eating their meal if this makes it easier for you. It will remove the pressure from you from trying to eat when you feel you just can’t. Equally, if you want to sit with everyone at the table with a small amount of food or just a drink, that is fine too. You can even leave the table if you need to because there is no sense in sitting there for a long time when you need to move away for whatever reason. If sitting at a table is impossible, maybe everyone could have Christmas dinner on a tray on their knees in the living room. There are no rules, so do what you need to do to avoid unnecessary stress.
Plan and prioritise periods of rest into your Christmas ‘itinerary’ and agree on a time limit for visitors to ensure that you don’t become too exhausted. Visitors usually understand and are happy to fit in with you, but if you’re not feeling up to curtailing a visit yourself, appoint a spokesperson who can speak on your behalf. If you’re staying with family, make sure that you have somewhere that you can retreat to for a period of quiet and rest. If you’re visiting family, agree on a time period that you will be staying for and make sure that they know that you might need to leave sooner if you don’t feel well enough to stay.
If you are undergoing treatment such as chemotherapy, which compromises your immune system and reduces your ability to fight infection, make sure that visitors know to stay away if they have a cold or other infections, such as D&V. That is certainly a gift at Christmas that you do not want!
There is more to Christmas than gifts and cards. If you can manage them and want to buy gifts or send cards, then do so, but don’t let it be to the detriment of your health or precious time. Maybe you could let this Christmas be the one that is less commercialised in your family? Agree with each other to buy local, practical gifts which you can purchase over time rather than do one big Christmas shop in a busy shopping centre. You could even agree to buy no presents at all this year and instead just spend time with each other sharing memories or funny stories. Christmas means different things to different people, but it was never meant to be what it has become.
If you do still want to get out to buy gifts but trips to shops are difficult or unwise because of reduced immunity, then consider internet shopping as an option. Make a list of who you want to buy for and place an order from just one place to make it easier for yourself. If you can find a local company to place an order with, then that is all the better. You could have a theme, such as buying something for everyone from a charity that you support. One year, I did all my Christmas shopping with a nature charity and purchased bird feeders and bird seed etc. You can of course donate on behalf of someone in lieu of a gift, and ask for donations to Cure Our Ovarian Cancer.
Make sure you have enough medications to cover the holiday period, and if you require incontinence pads or stoma bags etc, check you have enough of those too.
Create a list of telephone numbers that would be useful should you need help or advice over the holiday period, for example, hours contact, District Nurses, Palliative Care nurses etc.
I do hope that this will be of help to those facing a difficult Christmas this year. Above all else, I just want to help you create a safe space whereby you can enjoy moments, create memories and get through what is a notoriously exhausting and chaotic time. It really does not need to be that way and it is so important that you and your loved ones have this time to laugh, cry, hug, have alone time and take the pressure off yourselves.
OCFNZ started as Cure Our Ovarian Cancer in 2018, with a focus on low-grade serous ovarian cancer. In 2020, we expanded our focus to include all ovarian cancer and, in 2024, we changed our name to the Ovarian Cancer Foundation New Zealand.