In the first of two blog posts, Diane talks about some of the challenges that Christmas can bring for those living with long-term or incurable illness. She shares her experiences of Christmas since her diagnosis five years ago. You can read her second blog post here.

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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, previous years were a different story. I have had five Christmas’s with cancer so far and each one has felt very different and dependent upon what was going on in relation to my disease.

During the Christmas while having chemotherapy, I really 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 and so we started 2015 with bald heads.

A couple of Christmas’s 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 is 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 have no doubt that this year will be exactly the same and on New Year’s Eve I’ll be asking the same question.

Through the experiences I have had myself, both personally and professionally as a palliative care clinical nurse specialist, I wanted to share with you what I have learnt along the way as I know there are plenty of others out there who are facing the uncertainty of this being their last Christmas.

Before I move on I want to get something 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 a 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, they really 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 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. 

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Read Diane's second blog post here.