Big, scary meetings - a bad week

Hi guys,

Since I last wrote, there have been a few changes happening and I'm just about ready to go into it all.

On Tuesday 28th July, Steve went to the hospital for his pre-chemo appointment ready for treatment on the Friday.

We were right in the middle of moving house so we decided I'd stay at home with Esmée and keep packing whilst he went to his appointment. These appointments are never eventful and the clinic is usually running late so it seemed pointless for us all to go.

When Steve came to meet me at the house afterwards, I instantly knew something was wrong.

They had told us previously that Steve's breathlessness was caused by fluid on the lungs, which would need to be drained at some stage.

However, at this appointment,  the doctor told Steve that the X-ray showed the treatment had stopped working altogether and the cancer had quite drastically spread and grown, now covering huge portions of both lungs.

We were in complete shock - the last CT scan had shown that the disease was stable and the plan was to continue with it indefinitely.

The doctor mentioned a second clinical trial which Steve may be eligible for, and told him she was cancelling the current trial (Xilonix) with immediate effect.

We spent the rest of the day feeling as though we were floating, but not in that nice, dreamy way. As though the world had disappeared from beneath us. It was like we were drowning or struggling to breath. Anyone know has been through something like this will know the feeling.

We travelled the couple of miles to Steve's parents house to break the news, and of course they were just as devastated. Steve's brother, sister in law and nephews were also there, so we all rallied round for a chat, told them everything we knew and promised each other we must all stay strong and positive.

We arrived home around 5.30pm, I think.

At around 8pm, I noticed I had a missed call from my maternal Nan. I called her back, to be told that my mum was not expected to make it through the night. She had been in hospital since Sunday and had taken a bad turn. Her sodium levels were extremely low and a salt drip didn't appear to be helping. The doctors decided to stop the salt drip.

Steve and I hardly slept, and in the morning, when I heard my mum had improved slightly over night, we decided to go and visit her.

We were surprised by how well she seemed - thankfully, she didn't know quite how poorly she was, and so was in good spirits. She was chatty, playful with Esmée and was making jokes.

She was moved to the hospice a few days later and we're waiting to find out whether she'll stay ther for the duration of her life, or whether she'll go home or to a different sort of care home for a few weeks before going back to the hospice. We hope she can either stay where she is, or go to another care home for a while, as she's been getting confused and is quite nervous being home alone when her partner is at work. My nan drops in to see her, but my grandad has late stages of Parkinson's disease and so he also needs constant care from her.

We had a meeting with our oncologist this week regarding the plan of action for Steve's treatment, but we didn't find out anything new. We had some clarification on what we heard last week, and we are now waiting for scans and some more information on the trial.

Hopefully we won't have to wait too long and I can update again soon

Thank you so much for the lovely messages and continued support, it's very much appreciated!

Lots of love Xx

From diagnosis onwards...

When Steve was diagnosed, they weren't able to tell him how advanced the cancer was, if it had spread or if it would be treatable.

I can honestly say, 6th July 2012 was the worst day of my life, and Steve's too. I was filled with an overwhelming sense of guilt and helplessness, I don't know how else to describe it. I was desperate to take it away from him and go through it all myself if it meant he wouldn't have to.

It took hours to get to sleep that night, and we woke up in 15 minute intervals throughout the whole night until 6am, when we decided to give up on trying to sleep. I remember waking up and praying that it was nearly morning, and it was still only 2am. Longest night ever.

Steve couldn't bring himself to tell friends and family, so I left him downstairs with Mike whilst I went to our room and made the phone calls. Everyone had the same question - is he going to be okay? And I couldn't give them an answer.

He had MRI and CT scans, lots more blood tests, and his next appointment was on the 24th July. That meant 18 days of pure agony and waiting in limbo for answers.

He kept saying "what am I going to do if they tell me I've got 6 months to live?" and "I really wanted to go to Glastonbury festival next year but I don't see much point in planning that far ahead anymore." It broke my heart to see him scared and wondering how long he had left.

I knew this was a very serious matter, but from day 1 I really did believe he was going to be okay. I told him that, but he probably thought I was just trying to comfort him. I suppose in a way I was trying to comfort both of us. He had everything on his side - young, physically fit, no previous symptoms, a strong mind and a fantastic support network. But cancer doesn't care about those things.