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