I’ve had a lot of weird jobs in my life. As a student I worked jobs that ranged from shortbread factory worker to smelly shoe shop assistant dealing with cat ladies who just wanted company by trying on shoes .. but nothing could have prepared me for the role of wife to someone with terminal cancer.
If I had to write a job description I think the attributes/responsibilities would be as follows..
*Constant paranoia.. any cough or twinge of pain is enough to trigger..
*Expert Googler. Have mesothelioma query.., will search! I find myself discarding the negative stuff on the net and focusing on the successes and getting those news snippets out on our Erase Meso social media channels.. the treatments that show glimpses of light.. Its so frustrating feeling helpless as a carer so you find yourself desperate for any kind of value you can add to the cause.
*Cheerleader. Positive outlook on the outside “You can do this, babe” and “I’m so flipping proud of you..” “Yup, He's doing great. Next scan is...” is another. I'm a hoover for encouragement or when I hear positive meso-warrior stories. Hope is the only major lifeline you have when it comes to mesothelioma.
*Sleepless nights. I dread waking up at night because that’s when the fear often kicks in. I lost my dad at 15 so I know how it works when daddies die. And it’s horrific. I’m probably more paranoid about Cam, my son's loss.. & the lasting effects it would have on his young life if Paul were to leave this earth. *shiver* :-(
*Administrator, PR, juggler & chauffeur. Must file & keep on top of all Meso-related files/appointments. Keep everyone informed. Ignore the sympathy. Whether it’s from the govt or health service, every communication needs to be kept on top of..and then there's the school-run ;-)
It’s certainly not a job anyone would willingly apply for .. but then I must also stress that in my husband’s case, I think I’m the best candidate for the job. And the chap I "work for" is the BEST in the world.
He has been heroic throughout. Father’s Day is coming up & I wrote on his card how he inspires me every day. He treats his affliction like a job & works so hard on his bike & at the gym.. He is in pain EVERY day & refuses to let this mesothelioma get the better of him..
Scanxiety. Paul has his bloods taken on Friday then CT on Tuesday. Results on the 11th.
Always feel a bit sick as the results approach..but what can you do?
It’s wonderfully weird because although back to work, Paul still spends a LOT of time at home. And we don’t argue... Before Paul was diagnosed, he worked every hour God sent in the City & would rush back to glimpse Cam for maybe 10 mins at the end of the day. Now they are best, BEST mates & are constantly off swimming, golf range or to cricket.. or Cam is jumping on the back of Pauls scooter to get to school.. They are always laughing so I guess the gift Meso has given us is that those 2 have a transformed & much closer relationship.
This month Paul went kitesurfing again.. twice. This was a huge milestone because he was specifically told he’d never be able to do this again. #stuffmesothelioma He also cycled the London Revolution (300 kms in 2 days) with his fellow LEJoG training mates.#teamerasemesolejog I cried when he finished. The whole team were incredible and everyone made it to the finish line pint! LOVED meeting Nigel Shaddick. What a complete gent - utterly inspiring.. and so glad he's on our LeJoG team!
Neither Paul or Nigel are supposed to be alive right now let alone completing tough sporting events! We feel very blessed and grateful.
Also, team member Tamsin Whipp smashed her sponsorship target raising an astonishing amount for Erase Meso. Thank you, TAM!! You are the kindest (and looking FIT!!) ;-)
Going back to Paul and why my "job" has huge upsides..and is actually really an honour.
He’s an extraordinary human being. I think if I’m honest I wouldn’t have had the nerve or strength to achieve what he’s managed to. He has kept his head straight the whole time. Even in the darkest hours of chemo he was good at regaining perspective and ploughing on..
Erase Meso. We are starting to gain some profile. Mavis has been amazing & she’ll help us look at the right research funds to invest in. We really are very excited to be collaborating with the Mavis Nye Foundation!
My amazing pal Nina Gold is hosting her 40th in Germany in a couple of weeks. Rather than presents, she's asked party attendees to donate to Erase Meso instead. (I cried when she told me..even when I think about it)
Beggars belief how UNBELIEVABLY kind and thoughtful she's been..& a Lejogger too!
James Foulkes from Kingpin has agreed to help with comms, Charlie and Jo at Mando Direct #mandodirect helped us with invitations & the ball has sold a few more tickets. I’m a bit worried about ticket sales but I’m hoping that sales are low primarily because the event’s not until October. If you're reading this and are free on October 4th, please PLEASE join us!! It's going to be amaaazing! Www.erasemeso.org/ball-2019
The beginning of this post sounded really depressing, didn’t it? Wasn’t exactly optimistic reading.. but we really do have SO much to be thankful for. Paul is HERE and apart from everyday pain (which he just ignores) he is on amazing form. Cam is doing good and his confidence has soared this year. He's started cricket and he surprised us at a recent school event when he came out of his shell and did really well on stage.. he even recited poetry to the whole school in a poetry comp.
We have started a charity which will hopefully do well & we still have amaaazing friends & parents surrounding us.
Whatever this scan brings, we will get through it together. Our pal Nigel (Shaddick)’s immunotherapy continues to work so we have some hope if we can possibly afford the treatments or get on a trial...and we do occasionally hear the success stories or when people have just managed to "manage" meso..
I think at the end of the day, we all just need to be honest..
Courage doesn't mean you don't get afraid.
Courage means you don't let fear stop you.
Mesothelioma will not beat us.
Meso-MEHH! Every day my husband survives & we can thank God for that. I am so fortunate to have such a beautiful hubby who LOVES life and smashes it each new dawn.
This is the video I showed our ball committee.
It tells our story in around 7 mins if you have the time.. I'm afraid it's rather amateur but I hope it gets our message across about EraseMeso.org
As ever, thanks for reading, and if you're afflicted in some way from the meso-horrors, I SALUTE YOU xx
You are not alone.
You can always get in touch on firstname.lastname@example.org