Monthly Archives: October 2013

They said sorry

The Iberostar Grand Mencey Hotel has said sorry without reservation. The manager took full responsibility for causing the problems that led to our complaint and we have accepted his apologies.

You can come out now

You can come out now

In the UK we have legislation which protects the families of people with disabilities (and cancer is included in this) because mis-treating close family members is considered indirect discrimination. I’m no lawyer and cannot say if this would have applied in this case if it had happened in the UK but it felt pretty rotten to us. The hotel accepted this and have made amends.

We’ve had some really kind and thoughtful comments and thousands of people have visited the blog. Once again we have learnt that while cancer can be truly awful, it also brings out the very best in most people. Thank you for all the support and having our backs – it matters a great deal.

Is this discrimination against a cancer patient and his family? It feels like it.

Don't judge a book by its cover

Don’t judge a book by its cover

*UPDATE – this has now been resolved with profuse apologies from the hotel*

Here we report on the Iberostar Grand Hotel Mencey in Tenerife.

This morning this hotel reduced Henry to tears. That’s not easy to do. He has had needles thrust in his chest, regular injections in his spine, he has had high levels of vein-dissolving chemotherapy, he has had blood and plasma transfusions, he has had his hair burnt out by his medicine. He has had disfiguring steroids that have swollen his face and body and others that have made him unable to run, sometimes even to walk. He has fought all this with as much patience as he can muster, which is a lot. He has not faced meanness until today. It was the meanness that brought on the tears.

Today he tried to go for a swim with his brother in our posh hotel – the Iberostar Grand Hotel Mencey. He’s a guest here. His bed did not come cheap. But we’ve had a very hard year and this is Henry’s first big holiday since he was hospitalised on New Year’s Eve 2012. The hotel decided we could not. Henry would be allowed on his own but not with his brother or both his parents.

Because of his leukaemia, Henry has little tolerance to the sun. There is an indoor pool, and an outdoor pool that has no shade at all. We chose this hotel because it would give us options – to avoid the heat of the sun when necessary.

Iberostar Mencey's unshaded outdoor pool

Iberostar Mencey’s unshaded outdoor pool

But when we asked for a short swim in the indoor pool, as it is not safe for Henry to swim too long in the direct sun, we were told the indoor pool was for adults only (a fact not made clear on the website). The pool is empty much of the time. Even though it’s a 5-star hotel the staff were totally inflexible. Henry’s kindly Uncle G, who has contacts in the hotel trade, made some requests behind the scenes and we received a call from reception and told our use of the indoor pool would be ‘no problem’.

Family permission withdrawn

Family permission withdrawn. Looking into the indoor pool.

We had a 20 minute swim and the boys were quiet and well-behaved. Two days later we returned to the indoor pool and our permission to swim as a family had been withdrawn. Apparently a fellow-guest had complained. The hotel manager said he had explained to this guest that the hotel had made an exception for us because our child has cancer, but the guest had said that this was not her problem – it was ours.

The hotel decided to prioritise this complainant’s wishes over ours.

We have, overall, been lucky on our travels when we have needed some flexibility. This is one of the few things that helps you through the grinding misery of childhood cancer. The Grand Hotel Mencey – one of the jewels of Iberostar’s chain – has been the exception. They have shown us meanness and shown our children that, in some establishments, intolerance is rewarded. I’m not sure this would have been legal in the UK, Iberostar insists that in Spain it’s fine.

It has tarnished our longed-for holiday that we have stretched ourselves to give the boys.

I burnt the toast

The smoke alarm went off this morning. As ever our 4 year-old, Huck, dashed out of the room. He is terrified of alarms. We are used to his reaction to smoke alarms, car alarms and even hand-dryers in public bathrooms if they are high-pitched enough. We don’t really stop to think that it is odd.

We’ve always put Huck’s fright from alarms down to his 101 days in hospital after he was born 13 weeks early. If you’ve ever been to a neonatal intensive care unit for the wrong reason, you’ll likely have been struck by the discord sowed by the alarms – an apparently random dissonant collection of noises. They don’t really stop.

Careful handling of Huck in neonatal intensive care

Careful handling of Huck in neonatal intensive care

They are there to warn you that your child’s oxygen levels have dropped to dangerous levels, that they have stopped breathing, or that their heart has paused its beating. Back when Huck lived in intensive care and for a good while afterwards, we heard the alarms in our dreams. I don’t see why children, like adults, should not be affected – however difficult that is to prove.

Henry’s yellow hair is sprouting again. He is catching up on his school work. He is getting faster. Every day, he looks a little healthier. But last night, he climbed into bed with us. I only realised when I was woken by the sound of him grinding his teeth. Trauma for children must be expected, but we are given little guidance on how to spot the signs and how to tackle it before it becomes an issue.

Henry and Pam, October 2013

Henry and Pam, October 2013

Today our marvellous friend and cheerleader Pam, who is in London from the US for a few days, shared a blog by Perri Klass published on the New York Times website (Haunted by a child’s illness) that reminded me that Huck’s reaction is probably not normal, and that Celia and I need to be mindful of our own response to the upheaval in our home. For our sake as well as the boys’.

There are so many good points in the NY Times blog. Do parents suffer a kind of post-traumatic stress disorder in the years after a child’s illness? What effects do children and parents suffer? How can you tackle these problems? How do you stop them in the first place?

My mantra during the days with Huck and more recently with Henry (picked up second-hand from BBC warzone training) has always been: Don’t become part of the incident. Others might call this unhealthy denial. But we have been enormously lucky to have huge amounts of support. We have this blog where we vent our anger and “get it out”. We have employers who give us the space to deal with our lives. We have friends and family who provide for us in any number of ways and force us to take time out. And we know our responsibility: we do everything in our power to stay well – mentally and physically. We know we are in a struggle.

When writing the news at the BBC, particularly when dealing with harrowing stories, I tried to separate myself from events – deliberately trying to be dispassionate. There is a difference between where I was and actually being in the heat of the action. In the newsroom, I could look away from the feeds bringing in frightful, often disgusting pictures of atrocity. I could turn my eyes to more normal scenes when I needed to. I was rarely in the field.  I’m lucky that I was never caught up in the horror of a country facing upheaval or directly and devastatingly drawn in to the action of a country in crisis. But I had colleagues who were. And they took different, but often unsupported ways to try to reconcile for themselves what they had seen. There is an excellent article on this: Journalists and trauma: ‘Some images you can’t forget’. And I know now that “being dispassionate” doesn’t work.

With Huck and Henry we have been in the field. With help we have come to cope with it.  I hope.

Huck and Henry at the ice cream parlour

Huck and Henry at the ice cream parlour

This week, the charity, Macmillan Cancer support has released research saying that nearly a million people in England look after someone with cancer, half of them felt they weren’t getting enough support, and nearly half suffer mental health problems. Macmillan’s research coincides with a campaign to influence the Care Bill which is currently being discussed in Parliament. Please click on the link and ask your MP to do their bit for carers. Most people are not as lucky as we are.

Yellow hair

AS Byatt's 'A Dog, a Horse, a Rat'. Published in the TLS, May 24 1991.

AS Byatt’s ‘A Dog, a Horse, a Rat’. Published in the TLS, May 24 1991 found in Westminster Reference Library.

At a spa hotel today (writes Celia) and child-free, we are tucking into the papers. A Times interview with AS Byatt moved me to heaving sobs on my indoor sun-lounger earlier. She lost a little boy to a drunk-driver 40 years ago. The article quotes her rare and ungooglable poem, ‘a Dog, a Horse, a Rat’ (inspired, of course, by Lear’s cries at the loss of Cordelia) :

“But I have heard what they said
As they remade my life
With their plain ‘He is dead’
None of my breaths since then
Is easy or is sure
Nothing I think or hear
Without ‘thou’lt come no more’
…My skull contains the lost
Breath of your yellow hair
Of your burned yellow hair’

I’ve never read or heard the poem before but I knew it in my bones. And it dawned on me that I read Byatt’s Posession not long before Henry was born. There is a line of verse in it that is about yellow hair. And as Henry’s endless tufts of blond started to sprout, they were always yellow to me. I often talked to him about his lovely yellow hair. The first bits of fluff are appearing again since his last bout of knock-down, drag-out chemotherapy. Byatt’s words reminded me how profoundly lucky we are that his yellow hair is not lost, and this week he reached his seventh birthday. She is speaking tomorrow at the Cheltenham Literary Festival, and we are staying for the weekend, as luck would have it, near Cheltenham. I think we may be packing up tomorrow to go and see this wise, wise old woman.