27th May 2019

Phoebe Grassby

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Being diagnosed with lung cancer when you are just 31 and have two small children, it’s beyond comprehension. But it wasn’t just lung cancer that Phoebe had to cope with…

“I’d been having unusual symptoms. I’d been having blood clots and phlebitis in my legs as well as lots of migraines.

Phoebe, living with lung cancer.

All cancers can give you blood issues but it’s more prevalent in lung cancer. Normally they thin it rather than thicken it, but in my case, they thicken it to the extent where I was riddled with blood clots, got deep vein thrombosis (DVT) and had to have my leg amputated.

The very first feeling I had after losing my leg was relief because I was in an awful lot of pain. I was grateful not to lose any more because I was clotting everywhere – in my arms, my other leg and in my neck – but they didn’t know what was causing it.

“Every kind of twinge I get anywhere, I think that’s another clot, it’s come back and that’s it – curtains.”

Phoebe was diagnosed with lung cancer aged 31

Lung cancer was never ever considered or talked about. Once I was in hospital I had a CT scan. That was when they first spotted something on my lung.

But even then, they still checked my ovaries and my breasts first because they thought that was more likely, that it had metastasised from somewhere else. It was only after the lung tumour was biopsied that they discovered it was lung cancer.

I was put on crizotinib straightaway. I was on that for 8 months, whilst also in rehab learning to use my new prosthetic. In December 2016, I had a CT scan which showed improvement and shrinkage.

In January, I had a PET scan and that was clear. In February, I had a bronchoscopy which was clear, and then in March I had mediastinoscopy which was clear.

In June, I had a lower left lobectomy. They also took out some lymph nodes which showed single cells of cancer left in there so I had a 12-week course of standard chemo. That finished in November and that was the end of my treatment so far.

I’m two and half years down the road now and currently no evidence of disease. But that doesn’t mean that it won’t come back or that I don’t have bad days.

I find it really difficult to deal with the bad days. I close in on myself and I don’t tell people what’s bothering me. Any kind of niggle I get in my leg, any sort of cough and cold, I immediately think it’s back, that’s it.

Between having the CT scans and seeing the oncologist, that’s the worst. You think he’s definitely going to say that it’s back.

Every kind of twinge I get anywhere, I think that’s another clot, it’s come back and that’s it – curtains. That I won’t be here to see my children grow up. That they’ll always be the kid without a mum and the fear of how much that would affect them mentally.”