A pity party is one “in which you spend your time feeling sorry for yourself
and whining endlessly about how crappy your life is.”
(as defined by Urban Dictionary).
It would be very easy and understandable for any of us living with myeloma to have a pity party for ourselves from time to time. But, even with three myeloma patients in the same place, there was none of that going on in a sleepy Hertfordshire village a couple of weeks ago. Au contraire…
A new and previously-only-online blogging friend, Deborah moved from having smouldering or asymptomatic myeloma to full-blown proper serious myeloma on 7 January this year, just 3 days before her 50th birthday. I totally understand the devastation she felt, made so much worse by coming at a time of expected celebration.
Since then she has been in treatment, which has led to remission. She recently harvested her stem cells for a possible future transplant, but she is on a trial to see how long remission lasts following initial treatment before needing a transplant, so for now, her stem cells are in storage.
All would be well except that the treatment she had also caused peripheral neuropathy (a common side effect of Velcade/Bortezomib). So although she is in remission, she is now having to learn to manage intense pain.
Fortunately, she is getting a lot of help from pain specialists at the local hospice. Amazingly to both Deborah and myself, she found that hospices are not just a comfortable, caring place to die, they offer other services to enable sick people to live well with cancer and other life-shortening or terminal conditions.
One of the things that has kept her going through the first nightmarish six months of this strange unbidden journey has been the idea of holding a belated, summertime 50th birthday party and of using it to raise awareness of and funds for Myeloma UK.
Deborah, her husband Colin and sister Kate, along with generous and energetic friends and even complete strangers worked so dedicatedly to pull off one of the best parties I have ever been to.
Deborah and Colin are fortunate to live in an idyllic little farmhouse, with a barn and open space they can use, overlooking open fields and countryside. And because they are such warm generous people, they clearly attract the same. It was this generosity and warmth that made the party so special.
From the moment I arrived, I felt like an honoured guest. Deborah was delighted that I had come and welcomed me with a big hug, while Colin rushed off to fetch me a cool drink. Meanwhile, their best friends, Sue and Angela took charge of me. They let me stash my picnic in their mobile home’s fridge, took me and my bag up to the main bedroom that Deborah and Colin had generously given over to me for the night (they would be sleeping in their mobile home) and brought me to join them at their table. I was not going to be left lonely, that was certain.
Another myeloma blogging couple, Lorna and Mike were there. Mike has myeloma, Lorna mostly writes the blog. We’ve chatted online for some time and had a couple of failed attempts at meeting up over the last few months. It was great to finally meet them, as they joined me under the friendly auspices of Sue and Angela. We shared the table with other charming people: Colin’s sister Lorna and her family and Sue’s sister and husband. It was a gregarious little crowd who made me feel at ease almost immediately.
The effort that had been put into making the place look inviting was evident. A number of local companies had provided their services for free, to make it a night to remember and to help raise as much money as possible. There was pretty bunting everywhere, strings of fairy lights draped down the back wall of the barn, a disco ball on the ceiling and a stage for the musicians, all surrounded by large hay bales for people to sit on. Not to mention a variety of chairs and tables, covered in red checked gingham tablecloths placed around the grass space in front of the barn. It could have been a scene from a Country & Western movie, if only there were a few cowboy hats and spurs in evidence.
We had all brought picnic food as instructed, which as the sunlight faded, we shared, along with jugs of Pimms and a bottle of Prosecco. Later in the evening, Lorna’s home-made Limoncello also made an appearance, which might account for the look on their faces in this photo.
The music began with a singer called David Mills, whose fine voice and great choice of classic songs managed to get all ages up dancing. Later The CC Smugglers, who were also playing for free, kicked up their heels to give us a very exuberant set too. But the pièce de résistance was when they were joined on stage for a very special song by a celebrity…
Some of you will recall a song from 1995 by Pulp, called Disco 2000, which features a girl called Deborah:
“Oh, we were born within one hour of each other
Our mothers said we could be sister and brother
Your name is Deborah, Deborah
It never suited you.”
Yes, this is the very same Deborah, who grew up with Jarvis Cocker, the lead singer of Pulp. She hoped he would turn up, in fact in the weeks leading up to the party, she rarely failed to mention her hope in her daily blog updates. But until he appeared, she wasn’t sure if he would come. However, he not only turned up but quickly taught the Smugglers the chords for the song and leaped onto the stage to join them in singing it to Deborah, who was absolutely thrilled to pieces. The rest of us were pretty wowed too.
As well as good music and a delightful setting, there was a raffle with some very attractive prizes. I seemed to be sitting at the lucky table… well, lucky for almost everyone at the table. One couple won VIP tickets to see Elton John in concert, another received tickets to Leeds Festival, along with an unusual piece of jewellery.
But Lorna and Mike hit the jackpot! They not only won a patio container full of geraniums, an afternoon at a health spa, but most impressively two VIP tickets to the V Festival with Beyoncé headlining. Gallantly they returned the spa voucher to be raffled again, but there was no way anyone could have persuaded them to give up the V Festival tickets. They were absolutely thrilled and everyone at the table was delighted for them.
As the evening crept into night, and the alcohol crept into bloodstreams, it began to get a little calmer and Colin lit the bonfire, which many of us simply sat and stared at lazily, when we weren’t frantically brushing away low flying sparks blown in our direction by a mischievous breeze.
Very gradually people started to leave, but those of us who were staying overnight stayed up chatting near the fire, until finally weariness got the better of us and we drifted off to our respective sleeping quarters.
The following morning, I shared breakfast with Sue and Angela and we talked for hours, sharing life stories and setting the foundations for what I hope will be a good friendship. Most people had left by lunchtime, including Sue and Angela, with promises to stay in touch. So in the afternoon, in the garden, there we were, the myeloma crew… Deborah and Colin, Mike and Lorna, and me.
It was good to be able to talk on a deeper, more serious level about our feelings about having myeloma or being the partner of someone with myeloma, our hopes and fears, even some denials. I often chat about our situation with my friend Wendy, I sometimes participate in online forums and I’ve had numerous conversations with transplant buddies at clinic, but this was the first time I’d been part of an accidental ‘myeloma support group’. It certainly wasn’t a pity party; even though we spoke about dying, we are all so much more aware of our desire for and need to live in the moment.
As well as being a wonderful evening with lovely people,
the party raised over £1,500 for Myeloma UK.
I know Deborah is deservedly proud of this achievement.
Well done everyone!
And here are a few more photos from the party.