patients Stories

Sue's Story

Saturday 15th March 2014, midday. Alone, gowned up in the recovery room.  Nicola rushed into theatre so they can deliver her baby.  Would it be forceps or C section?  Worried, waiting not knowing.  It wasn’t supposed to be like this.

Congratulations you have a grandson.  Good grief what am I supposed to do with a boy, I had two girls.  Slight shock, go to make calls.  You’ve got a grandson, nephew, great grandson, step grandson, laughter, joy, elation.  Me still in shock!

Mark appears with baby, such a cute little boy, Nanny’s Little Soldier, but where is my daughter; she’s the one I want, right now.  Then she’s back shaking like a leaf but in one piece. All is good in the world.

Then she’s home, but suffering abdominal pain, and feeling poorly. Doctors had varying opinions, but not right.  Ambulance in the middle of the night when pain got too much, back to hospital, please make her better.

Too many opinions, scans, blood tests, cannula’s, drugs, intravenous IV’s, tears, loads of tears, like  a little girl again, not coping,  feeling so ill, frightened of the pain of the needles.  Heart-breaking, nothing I could do to help her.

Problem with her liver they said, gallstones they said, pneumonia they said.  Was it any of those things, who knows for sure?  Irregular heartbeat, goodness, what next, heart attack, maybe cardiomyopathy, perhaps?  Angiogram to confirm.  Confirmation;  Wolf Parkinson White (WPW) a genetic condition.  However, there is a shadow on her liver, they said, told to Nic and me during visiting one evening.  My daughters got cancer I thought.

Another CT scan.  Results show nodules, lesions, could be the source of infection.  Great at last I thought.  Biopsy they said, to check things out.  My daughter’s got cancer I thought.

HEHE  diagnosed.  News broken to Nicola when all alone, rare condition, could turn to cancer.  HEHE, not very bloody funny is it?

Go home they said, enjoy your baby they said, have a drink they said, be normal they said.  We’ll phone with biopsy results they said.  Except they didn’t. We’ve made you an appointment for Thursday, they said.  What can’t they say over the phone?  My daughter’s got cancer I thought.

Thursday 29th May 2014. Appointment day.  The day that changed our lives. Phone call at work, “it’s cancer Mum”, she said.  “I’ll be right over”, I said.  Five minute walk seemed to take forever.  Sat on a trolley in a large empty room, crying, Mark cuddling her.  Liver transplant she said.

Shock, disbelief, how had we got here? Left the room together, sat on posh new seats.  Phoned her dad.  “Its cancer Dad”, she said,  heart-breaking.

Returned to work, familiar faces, sympathy, hugs, some teary faces, staff room, words of comfort.  Extreme hunger, where had that come from? Shock they said.

Then dark thoughts.  Was it my fault?  X-ray when pregnant, could this be the cause?  Bartonella, cat scratches, always had cats.  How, How, How?  Speculating, waste of energy.

Sister on holiday in California.  Need to tell her before she hears it from someone else.  Need to go round as soon as she returns, her dad and me.  Weird, for her, both of us together, no time to unpack. Tears, disbelief, both trying to be strong for her.  Swallowing hard, seeing her scared little face. Heart-breaking.   Can I donate part of my liver, she said.  Perhaps we said. Nightmare we thought, both our little girls going under the knife. Both so brave. Oh so proud of them both.

Holiday for  Nic’s step dad and me. Should we go? You need a break they said. Good to get away, but too much time to think, made me so sad.  Tears every day, gazing at the sea.    My daughters got cancer I’d say into the wind.

Kings College Hospital, transplant assessment, thought it was a foregone conclusion, why an assessment?  Transplant refused, could be harmful, as EHE spread to lungs.  What now? My daughters got cancer and no-one is doing anything, I thought.

I want to see Professor Judson at the Royal Marsden, she said. Young Mum needs to be fit for her baby, he said, so let’s watch and wait, he said, six monthly scans, he said.  Sounds reasonable, I thought.

So, life restarts.  Nic, still Nic, but changed, fearful, quieter, more thoughtful.  Simple decisions, seeming to be hard. Counselling they said.  It should help, they said.  It did. A bit.

Some days, looking at her, seeing her smile at her baby boy, pleasure in the small things.  Heart-breaking, but I smile, tears are for bedtime. Alone in the dark.

Watching her grow again, like from child to woman, starting to blossom, till scanxiety hits again.

Think positive thoughts, always the positive thoughts.  So fit and healthy, such a wonderful mummy, how will this horrible disease ever do her harm. How can it?  EHE, stop, look at her, admit defeat and “do one”.

“Just Live” my gorgeous girl.