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Inspirational mum blogs battle with rare ALK-positive cancer

Joanna Heard has an incurable cancer Photo: Trinity mirror

A brave young mum is gaining strength from blogging her fight against a rare incurable cancer.

Joanna Heard, of Haslingden, was diagnosed with stage 4 lung cancer in July, six months after giving birth to daughter Freya.

The 34-year-old was then told on August 1 that she was ALK-positive, a genetic condition mainly affecting young and middle aged women who are usually light or (like her) non smokers.

While drugs to shrink the tumours are available on the NHS, the coffee shop worker says life expectancy is currently still only around seven years.

Joanna, who describes herself as an ALK-positive lung cancer warrior, has set up the @justamammafightingcancer Instagram blog, which helps her to come to terms with the everyday struggles, while shining a light on a little understood condition. The blog has nearly 600 followers already in just over a month.

Joanna admitted when she was first diagnosed she "was knocked for six" and inevitable dark thoughts entered her head.

“It was surreal. It was like 'this only happens to everyone else', I’m just your average 34-year-old mum. “My general feeling was I’m going to be dead in a year.

“You’re having to sit there and think realistically ‘if they can offer me chemotherapy, is it worth it?’ To go through those thoughts and emotions was terrifying, but people face it every single day.”

– Joanna Heard
Joanna Heard Credit: Trinity Mirror

Doctors had suspected Joanna, who is planning her wedding to partner Daniel Jonathan on Good Friday next year, had chest infections, pneumonia and even pleurisy, and she is passionate about highlighting the problems of misdiagnosis and improper treatment.

“It is affecting more and more young people and not every hospital offers the testing of cells that finds these rare forms. “Not every oncologist in the country knows about it, which is quite scary. Sharing knowledge is sharing power against this awful disease.”

– Joanna Heard

Joanna, who is originally from Southport, is on a daily treatment of tablets for life, however when she grows immune to the drug after three to five years she will require an alternative.

“Whenever this one stops working for me the next one will be available.

“They’re very expensive, which is why they don’t offer genetic testing to everybody.

“I’m still breathless and cannot walk very far. I’m now classed as disabled. I get quite a lot of nerve pain.”

– Joanna Heard
Joanna Heard Credit: Trinity Mirror

Joanna, of Peel Street, says writing the blog has helped her greatly to stay in an optimistic frame of mind and also helped her friends and family to deal with what she is going through.

“Because I’m so positive they are a lot more positive about it. I do know I’m going to do what I can to make a positive change.

“Warrior is a good word; it’s a battle at the end of the day to save my life and also battling to save others.

“I’ve devoted a piece on my blog about ‘why me?’. It was a therapeutic thing.

“When I was first diagnosed I shut myself off from everybody. I felt I’d let everyone down.

“I just started writing and I started a blog. I just enjoy writing; it’s something I’ve always liked the idea of.

“I’ve had some lovely comments. People say I’ve loved reading this and it really lifted my spirits.

“It’s hard to describe myself as a victim. I refuse to admit that I am.”

– Joanna Heard

Joanna added that an online support group of fellow patients have also been a ‘fantastic’ help, especially as most of the material available on the web about lung cancer survival rates is so bleak.

“The support group have been fantastic. It’s great to speak to people who are going through it.

“I often sit here and think ‘will I see my little girl get married?’ There’s a real possibility that I won’t. She’s my motivation.”

– Joanna Heard
Joanna Heard Credit: Trinity Mirror