Perspective.

When doctors want to give you bad news, they take you into the Relatives Room or Quiet Room. I was in there on Friday receiving devastating news, but somehow they make it OK. Not OK, that sort of news is never OK, but they explain things in such a way that it all makes sense. It’s about as bad as bad can be but at least you understand what has happened and the limitations of what they, as healthcare professionals, can do about it. They reassure you they are doing everything they can and you believe them. If they have even the tiniest bit of hope, then you do too because hope is all you have left. On Friday we hoped she would survive the weekend…

On Monday they took me back into the Relatives Room. A different consultant and this time, a nurse too. Alarm bells started ringing in my head. There was no nurse on Friday for that conversation. Are they expecting me to react badly today?! Imagine sitting in a little room with two people you’ve never met before, having a conversation about the value of a person’s life?! Is this person’s life actually worth saving? Can we predict that they will recover enough and have such a quality of life that they will want to live? It was the hardest conversation I’ve ever had to have. How can you possibly put a value on the life of someone you love?! And how can you even begin to imagine what level of function she would be able to tolerate for the rest of her life?! They paint different pictures, offer different scenarios of possible outcomes, but no one has a crystal ball. No one knows. When people are that poorly, the picture can change in the blink of an eye. And at the end of the day, it was never my decision to make. It was hers. She survived that first weekend when we couldn’t sleep in case the phone rang telling us she was slipping away. Then after that conversation to discuss whether her life has any value now to warrant life-saving interventions, she surprised us all again! If Jules wants to fight this, then so will we… love you Jules xx

It’s been a difficult week, made infinitely more difficult by the very necessary restrictions posed by COVID-19. Only one person can visit the hospital for one hour each day. I totally understand the reasoning behind that, I really do. But imagine being that person? Alone. In a Relative’s Room, being given devastating news. Trying to remember every minute detail of everything that was said, at the same time as managing your emotions. If you go to pieces you’ll be no good to anyone. You are the link between the person fighting for their life and their anxious family waiting for news at home. So you listen intently with gritted teeth behind your mask. Maintaining your composure until the end of the conversation as you try to ask the questions that you think may be asked of you when you relay the information to your husband and mother-in-law. You worry that you haven’t said enough, been a good enough representative for the family. Do you even know what her wishes would be? What if you say the wrong thing? At the end of the day, it doesn’t matter. It is completely out of your hands. So you thank the lovely consultant for his time, knowing they are fighting as much as Jules is, knowing they will make the right decisions anyway. But thankful that they are. You leave the ward alone. Your mind races as you stand in the queue to buy a coffee, frantically trying to remember every detail of the conversation you’ve just had. You take your coffee and sit in the dappled sunshine in the Wellness Garden, grateful for a warm day. You feel the icy tears escaping down your cheeks but you are numb, emotionless. So you wipe them away, take a deep breath and pick up your phone. How do you tell someone you love such terrible news? Do you tell them everything or save them the worst details to spare them a tiny bit of heartache, bearing that burden alone? It’s an impossible situation. They inevitably ask questions you cannot answer and you berate yourself for not knowing… You want to share the burden but you know that really you can’t, so you emphasise the positives in what is the bleakest of situations, and downplay the negatives. You search for things to say that might make an impossible situation a tiny bit bearable. You’re not very good at this and you apologise for everything because that’s all you can do. Why can’t I be better at this stuff?! People are counting on me to have the answers and at least remember what has been said. Things come back to me erratically, and I share these random thoughts as I get them, making it difficult to give some sort of order to the conversation. But telling someone that a loved one may not survive is hard. Telling them that you had a conversation about the value of their life is harder. You can’t afford to get that stuff wrong. The pressure to do the right thing and say the right thing is huge. I’m no good at this…

This post is called Perspective because that’s what we’ve been given. Life is shit sometimes but it’s only when something like this happens that you appreciate how lucky you are. Bizarrely, I’m not feeling lucky… I’m feeling sad, and tired, so very tired. Thank goodness for family and good friends and dogs. And thank you to Prince John for making me smile on what was the bleakest of days x