OVER TO DIANE –
It’s November and already 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 am one who lives with that uncertainty because I have Metastatic Ovarian cancer and although I’m stable again now, this time last year was a different story when I learnt that my cancer had spread to my chest. I didn’t know how my situation would pan out and this unnerved me and my family a great deal. This Blog is written through my own personal experiences but also from my professional experiences as a Palliative Care CNS. I’m reaching out to those impacted by the uncertainty of whether this Christmas will be their last.
I want to get something into perspective before I move on and tell you that Christmas is just a few days in a year and although this time is deemed to be special and steeped in tradition in families, it is still only a another day or so in the grand scheme of life. Every day is special when living with a life limiting illness such a cancer and I think it’s worth remembering that when we feel emotionally drained through trying to create a perfect Christmas. When all is said and done, Christmas is 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 is meant to be about sharing, caring and celebrating so by 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 absolutely understandable that you will find Christmas overwhelming and incredibly emotional. Don’t hide your feelings away as it is important to express what you are feeling as oppose to holding it all inside. What you are experiencing is known as ‘anticipatory grief’ whereby you feel differing emotions similar to bereavement. Rather than having a scenario of tears alone in the kitchen or bathroom or 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.
Family could bring food to share rather than cook for them especially if you are too weak to cook a meal or 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 absolutely 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 really need to move away for whatever reason. There are no rules to keep to so do what you need to do in order to avoid unnecessary stress.
Plan and prioritise periods of rest into your Christmas ‘itinerary’ and agree 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 or away from home, make sure that you have somewhere that you can retreat to for a period of quiet and rest or agree a time period that you will be staying for if you are visiting someone else.
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 infection 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 buying 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 is 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.
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 out of hours contact, District Nurses, Palliative Care nurses etc.
I do hope that this Blog 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 of yourselves.
A huge thank you to Diane for writing this piece and for sharing it with us. I hope that your Christmas is a peaceful one doing what makes you and your family content, Diane.
Please do feel free to leave a comment for Diane. If you find the thought of Christmas’s approach a difficult one, whatever the reason, please do get in touch with me.
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