5th March 2021

Joannas lung cancer story

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Six months after the birth of her little girl, the unthinkable happened – Joanna was diagnosed with stage 4 lung cancer. She feared the worst. She feared she wasn’t even going to see her daughter’s first Christmas. A year and a half on, Joanna is still scared for the future but is now choosing to focus on many positives of her life, including a new arrival…

Here, Joanna shares her experience of being a young mum living with lung cancer and reminding everyone that anyone can get this disease.

“With how advanced my cancer was when I was diagnosed, we were all convinced that I wouldn’t even see Christmas, and when you’ve just had a little girl, with all those new mum hormones as well, it was a really tough time. At that point, we had no hope.

There were nine days between being told I had incurable lung cancer to seeing my oncologist. Nine days of confusion, fear, of thinking the worst. I did what anyone would do, but really shouldn’t, in that situation – I googled – and that only made the outlook worse.

Things felt so bad that my partner Daniel and I sat down one night and discussed what we should do if palliative chemo was my only option. If it was only going to prolong my life for a few months but make me feel terrible for that time, should I even have any treatment at all? This is not something you expect to have to think about at 33, when you’re a mum of a beautiful six-month old daughter.

However, when I did meet with my oncologist, I found out that I had the ALK+ mutation which meant there were other treatment options available and, with it, a better prognosis. Despite this, I was still very scared for the future; I still am scared for the future. That hasn’t eased any. My prognosis may be better but even so, the fear is always there. Luckily my life has got some really nice positives in it at the moment, even if they didn’t feel it initially!

I’d written off having another baby; the forums I was in were quite vocal that more children wasn’t an option with the type of medication that I was on. But then in October 2020, I started feeling nauseous and had some tenderness. To put my mind at ease, I took a pregnancy test only to see two lines pop up.

I’d like to say it was a lovely moment, but it really wasn’t. It was filled with so much fear and dread and just confusion because we were like, how has this happened? I mean I know how it happened but how it had actually got to the point where I was carrying a child?!

It was a really confusing time when you find out that you’re able to bring another life into this world. I remembered how I felt when I was first diagnosed and I had Freya. The thought of leaving her was horrendous. So, adding another baby to that mix brought up a lot of questions – Am I doing the right thing? Is this ethical? Is it morally right? Would you bring a child into this world knowing that your life is limited?

We did a lot of research ourselves. I joined some more ALK groups from across the world and I actually found out that in America and Europe it’s quite common for women to go on and have babies with this kind of treatment. This was our first glimmer of hope.

I spoke to my oncologist who was fantastic. She was completely on board. Whilst my treatment is not recommended in the first 12 weeks of pregnancy, because there haven’t been any tests, there’s been a number of healthy babies born across the world.

I also know Roy Castle Lung Cancer Foundation is here to support me too. They’ve already helped me through all kinds. I use the Ask the Nurse service. I find it often a lot quicker than trying to get through to my own lung cancer nurse or oncologist sometimes. I recently received a £150 grant which has been amazing, especially during this time when Daniel’s had to give up work.

But more than that I’m friends with a lot of the people at the charity. They celebrate every high, and whenever I’m low, there’s always so much support in lifting me back up. It’s like having your own personal cheerleaders! It’s such a personal charity.

For us, it was about weighing up those risks. But you take those risks every single day, whether you have a disease or not. You don’t know what’s round the corner – no one has a crystal ball. We’re a firm believer in everything happens for a reason, so we decided to continue with the pregnancy. The fear is still there, but we’ve had lots of extra scans to make sure baby is ok and he / she is thriving, growing just as they should at this stage in my pregnancy, and aside from the sickness for me, I’m feeling really good.

It’s also reassuring to know that Freya will have a sibling. I grew up with sisters and brothers and I know how close we were. We’ve got each other through some pretty horrendous times over the years, so knowing Freya is going to have that person to lean on, support her and to go through it together when she loses me or her dad, and both of us eventually is reassuring. She’s not going to be on her own in experiencing life’s ups and downs.

And I love being a mum. There’s just so many things I love about being a mum. I love watching Freya grow and learn. It’s just beautiful. I’m so lucky that I get to be at home with her at the moment. Just seeing her little eyes light up when she discovers something new. I can’t wait to start taking her back out once the other C disappears and I can take her swimming, trampolining and all the things that she used to love. It’s going to be like she’s discovering them all over again and I’m looking forward to experiencing that joy and magic with our new arrival too.

I don’t know what the future holds but I know that we’ll live our lives as best we can until the end, whenever that may be.”