How do you talk to a five-year-old about their dad having cancer?
A family's story of navigating the emotional, physical and financial challenges of living with blood cancer, by Amy Gannon
The biggest struggle for me is accepting our situation, accepting Joel's blood cancer diagnosis. Every morning I open my eyes and our reality hits me. Every morning I have to process it again, accept it all over again. Joel has cancer.
An overwhelming wave of anger consumes me at that moment. It used to stay with me for the whole day, the unfairness of it all taking over every minute of the day. But now, I accept it quickly.
We get up, get out, breathe fresh air. We push cancer out of our minds, out of the picture for a moment and let a little normal in.
We have been living in a bubble to protect Joel while his immune system is weak. This has been difficult and lovely all rolled into one. Home schooling and seeing no-one other than the neighbours has felt like lockdown once more.
Whenever Joel goes to hospital, Isla gets an anxiety that he won't come back, like last time.
How do you talk to a five-year-old about cancer? I don't think there's a right or wrong answer.
I am always led by Isla. Sometimes her questions fill my eyes with tears. I used to try to hide my sadness from her, but with cancer in our house life cannot always be sunshine and rainbows. We all need space to feel what we need to feel.
We talk in colours: yellow for happy, blue for sad, red for angry or scared, pink for loved, green for calm.
I tell her when a mummy or daddy goes to hospital it doesn't stop them being your parent. Their love will reach you wherever you are. We just have to change certain things, like blowing kisses instead of cuddles. Drawing pictures and making phone calls, connecting in different but fun ways.
This week is Mental Health Awareness Week and it has got me thinking about the mental impact a cancer diagnosis has – the overwhelming toll living with or alongside cancer has on the patient and those around them.
It is easy sometimes to feel cancer has robbed you of more than health. It is natural to go through the stages of grief after a cancer diagnosis, to mourn for your old life. I used to feel like we always had to dig deep, put on a brave face, be positive, but actually you need to feel what you need to feel. You need to let it all out. Talking about how you feel with a friend, a family member, a health care professional, with anyone is so important.
Although our days are busy with appointments, paperwork, looking after our five-year-old, it's a different kind of busy to our old life. Sometimes this is hugely positive.
When Joel is feeling physically strong it is a blessing to have family time together. But when the days are tough, the anger and sadness return in full force. The simplicity of our old life comes creeping into my thoughts. I miss it.
Upon Joel's diagnosis neither of us was able to work, which was a foreign concept for us as we have always worked since we were 16.
I have found it really helpful to read others' stories of life with cancer on the Blood Cancer UK website and Instagram. The power of sharing stories and experiences is not to be taken for granted. It can unite and connect you when you feel lonely or that no one understands.
As a carer of someone with cancer, I often feel helpless. I cannot cure Joel's cancer. For the first time in my life I am in a situation I cannot fix. I cannot find a solution and I cannot protect my family from what cancer is doing to us.
I like to find ways to make a positive difference – and raising awareness does this for me. Fundraising also gives me a massive boost as I understand how important funding for research into new cancer treatments is.
Also, I have signed up to donate blood – 20% of transfused red blood cells are given to blood cancer patients. Joel has had countless life-saving blood transfusions and I am so thankful to the donors that I wanted to become one myself. If you want to look into donating blood then Give Blood is at South Mills Arts in Bishop's Stortford on August 4. You can sign up at my.blood.co.uk.
Finding something positive to keep your mind busy and making time for yourself are so important for your mental health. For some people that might be working out and exercise. Others like escaping via a book or watching a film. Whatever it is that gives you time to relax, make sure you take time out of your day for you.
We are beginning to plan our wedding and trying our best to let those positive thoughts win as we move into a new week. As a family we are making an effort to look forward, future focused, determined to let positivity win.
Joel's blood counts have improved and Isla has returned to school after a month away from her friends and teacher. She is full of joy and excitement now she's reunited with her classmates. Joel and I are hugely boosted by this. Joel continues to have chemotherapy from our Bishop's Stortford home and goes into Addenbrooke's in Cambridge regularly for monitoring and tests.
If you need mental health support, firstly speak to your GP. If you don't feel able to do this, you can self-refer to the psychological therapies service at www.nhs.uk/service-search/mental-health/find-a-psychological-therapies-service.
You can call the Blood Cancer UK support line on 0808 2080 888, and you can reach out to Samaritans, day and night, at www.samaritans.org or by calling 116 123.