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Thursday 25th January 2018 is Young Carers Awareness Day, a time to recognise young people who are caring for loved ones, and to thank them for the dedication they give. To mark it, Grace has written about her experience of caring for her boyfriend.
Grace is 23 and currently working part-time as a marketing executive for a homeware brand. Her boyfriend was diagnosed with stage 4 cancer in March last year.
In March 2017, my 23 year-old boyfriend was diagnosed with stage 4 cancer of an unknown primary. At the time, he was given six months, at best, if treatment failed him. The role of patient and carer, now entwined in our relationship, was so hastily bestowed upon us that I'm not sure we have our heads around it even now. All I know is that it is terribly hard to watch someone you love disintegrate before you.
Our story began in the last week of February when he was awaiting an x-ray result. After persistent trips to the GP surgery over the previous month, it was eventually picked up that his liver seemed extremely swollen. We decided that a two week wait for an x-ray was too long. The extreme weight loss, severe abdominal discomfort and a gradually worsening cough were becoming frightening, rather than a concern. It felt like nobody was taking us seriously. After a family discussion, it was decided to try and fast-track the process by getting him to A&E. He went into hospital on 2nd March, and by the 3rd he'd been diagnosed.
I feel like there is a lot of pressure on patients and carers to 'stay strong' and 'be brave'. You're going to be angry and you're going to feel devastatingly sad at unexpected times, and that is okay. 'Coping' doesn't have to mean putting on a brave face. Cancer rips any element of control from your life with a barbed grip. Every day I have to watch his body and mind suffer at the hands of this cruel disease and am helpless to stop it, so forgive me if some days I can't find the positives. Other times we laugh so hard that we cry, and you'd never know there was a thing out of place. You cannot know how you will react in these situations until you are in them, and it's important to acknowledge the weight that a cancer diagnosis puts on the lives around you, as well as the body it is in.
We are both fortunate to have a great support network of friends, but a lot of the time we feel quite lonely. We do our best to be a 'normal' couple and have dates, go on trips - even host parties. I can only speak for myself, but I know it's been hard to watch everyone live their twenty-something lives and progress, whilst we are in limbo. My main advice to anyone in a similar position to us is to always be honest with each other about when you are struggling emotionally. An open dialogue is key to getting through it together. First and foremost, you are still a couple - cancer is going to affect you but you don't let it define you. Still enjoy the things you love.
In my short experience as a girlfriend of a young person with cancer, I have found that a diagnosis is a perpetual balancing act. Communicating with the oncologists, chemo ward and palliative care team, though they were helpful, can feel like navigating uncharted water on top of an already emotional situation. Thankfully, charities including Macmillan, The Teenage Cancer Trust, and Clic Sargent have all reached out to let us know they are there. This was an immense emotional and financial help. Macmillan have a wealth of outlets to help you cope in the best way for you - I suggest taking full advantage of their amazing services.
It is now 2018, and we are coming up to our four year anniversary, a milestone that just three months ago we weren't sure we would meet. We wouldn't be here without all the hands of those around us. These hands belong to our friends, families, charity workers, healthcare professionals, and strangers who have touched our lives with love when we least expected it. We have met some truly astounding people.
I want to remind anyone reading this that as you support your partner, parent or friend...that those people work to support people like you. They are there for you, and the next person, and many more beyond should they ever need it. You just have to ask.
Questions about caring for a loved one? Join our Carers only group and start a discussion today.
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