Jules – News

“I find myself in reverie…”

It’s that time again…. 8 weeks on and Mike and I are back in Ysbyty Gwynedd in Bangor, awaiting the results of Mike’s blood tests.

The Alaw Ward (where LHS has donated £45,000 recently) is a whirl of activity and my nerves match the energy of the ward as doctors and nurses fly about, administering blood tests, drugs, good and bad news….

I can usually tell by looking at Mike whether he is well or not and so I feel confident that today will be a good day but it still does nothing to quell the churning inside… Dr Edwards comes to greet us, sombre-faced and my insides take a lurch! It certainly doesn’t get any easier!

Once ensconced in Dr Edwards’ office, I spy Mike’s results blinking at me on the screen, just out of reach but Dr Edwards speaks excitedly about Mike’s upcoming musical, (which draws inspiration from Mike’s medical journey)…. Dare I relax?  Or is Dr E softening us up before delivering bad news? The agony and ecstasy….!  The psychological combat zone! Today, however is one of the good days as we learn that Mike’s bloods overall make a positive picture. Mike’s white blood count is slowly descending and whilst not quite where it should be, everything is once again moving in the right direction.

The relief I feel is indescribable and it is only at that moment that I recognise how tense I must unknowingly become in the weeks leading up to these hospital episodes… I feel close to tears and utter joy… like an explosion of emotions… I could hug Dr Edwards on the spot! Dr David Edwards…this wonderful man who has been by our side since 1995 when he grimly delivered the news to us all those years ago,  that Mike had non hodgkins lymphoma and that the future didn’t look so bright…. We were two young kids looking back… petrified,  Mike refusing and determined not to receive  treatment… and me feeling desperately afraid but not wanting to admit it…. I’ll never forget having to travel to South Shields that night back in 1995, put on a brave face and play the show. As Mike has always reinforced in me… the show must always go on…. That was a low point for me….no offence, South Shields…

As I reflect, sat by Mike’s bedside with the click clicking of the machine keeping me company, I am grateful to MP for always being upbeat and positive when I’m sure he could have sometimes sunk into a pool of negativity…. His continued zest for life and new experiences is accelerating and whilst sometimes I could SCREAM  as I would really like a slower pace ;0),  I realise how lucky I am to have married such a ball of energy and passion for life.  Dylan and Evan, the MPO, The Alarm community and Love Hope Strength absorb every second of our life…a roller coaster of events, donor drives, emails and concerts. We’re off to NYC next, for the Bruce Springsteen Light of day show, Gathering rehearsals, finishing the musical, planning Snowdon, Ben Nevis and Holy Land Rocks, the 25 date Declaration tour kicking off on Feb 14th, back to NYC and SXSW, our spiritual homeland of Texas (where we flew to in times of trouble and met Angel Chippendale) a special donor drive at Westminster, a month in California, a tour of Norway, back to the USA in the Summer, Australia…

Just before we came in for  our results, today, Mike threw me some headphones and with a massive grin on his face, invited me to “Listen to this!”

Mike has been re-recording Declaration these past few months, slipping away to the Chapel whenever he can and its sounds incredible! Foot-stamping, organic genius.

So as I sit here watching Mike sleep, I can honestly say that despite some horrific moments, being diagnosed with cancer wasn’t the worst thing that ever happened to us… it has enhanced our lives. We know what it feels like to be on the brink of the precipice, staring down into bleak panic at a time of our lives when we should have been “young and easy” and so we feel more energised now than ever. This is a wonderful life and we don’t want to waste a second.

Writing it all down has helped me cope over the years and I want to take this moment to thank you all for supporting me. It has been so reassuring to receive your messages of love hope and strength and I love to be able to help wherever I can in return, offering hope to all the people since who have been battling with their own health issues…

Special thoughts go out to Alarm fan, Mitch Dooley in the USA who has dealt so bravely with his cancer diagnosis and has made a wonderful recovery and MPO’s very own Dave Spragg, who has recently been diagnosed with cancer and he is fighting the battle of his life. Dave is the flag bearer for all our LHS events in the UK and symbolically last year (as we all slogged up Ben Nevis), the LHS flag snapped halfway and Dave, uncharacteristically felt unable to make the summit and turned back down the mountain. A few weeks later, Dave was diagnosed with bowel and liver cancer. I invited Dave to the Gathering to ‘shadow’ Mike a few years ago when Mike was struggling with his health and Dave did a sterling job, shadowing MP and taking care of him. Now it’s our turn… I’ve made Dave a special customised T shirt with ‘Spragg, Mike’s Shadow’ on the back so for all you Gatherers joining us in Llandudno on Jan 31st,  if you see Spragg darting about, please send him an extra hug of love hope and strength….

Come and visit us at the LHS desk. Lydia and the LHS volunteers will be there to swab you, talk to you, sign you up to all the LHS events. You can visit us at the Gathering or on the Declaration Tour. You could be the person to save a life so if you aren’t already on the bone marrow donor list, please give it some thought and  come and register.

Mike and I will be back in Bangor Hospital in 8 weeks time for more ‘treatment’ (makes me smile every time ;0) You hear negative press stories about the NHS so it’s important to flag up that Mike receives the most wonderful care under the watchful eye of Dr Edwards and the NHS Alaw Team as well as the Cancer Centre in Glan Clwyd Hospital, Bodelwyddan.  Over the Gathering weekend, we look forward to presenting a cheque for £40,000 to Dr Edwards on behalf of LHS which will benefit all cancer patients in North Wales. Well done all you LHS trekkers… You really are making a difference!

Thanks for supporting MP and I on our journey… We look forward to the greatest concert and party ever in a few weeks time! Come on! Get In! The Gathering!!!!


Jules X