Was it worth it??..

Thursday the 7th March was, for me, the big coming out party. Since taking my story public 14th February I'd only been drip feeding as to what the illness was, that I'd been diagnosed with a terminal illness and was lucky to still be alive. But I'd started a charity in the hope of raising awareness for earlier diagnosis moving on. Nothing as to what the charity would be doing.

Id booked onto a Sportsman's dinner to do a 20 minute presentation. The venue was already booked and tickets already sold before hand, however the guys at AAG Events have always supported me as I support them and gave me a good bulk of tickets to shift on and generate some funds for the charity.

A well known and respected man in his profession after having life changing news was starting the show ;-) with some guy from New Zealand who plays rugby for clubs and National here in Wales was also nipping in.

I had asked for this, I was this is my perfect chance to create my own Theatre. A chance for me to be on a stage, with audience I felt comfortable with. Thursday the 7th March was booked, for me it was the big coming out party. A well known and respected man in his professions and I'd herd some guy from New Zealand who plays rugby for Cardiff and Wales was also nipping in.

To me this was Ideal, I could deliver my message to accommodate the rugby audience and families who would be in attendance. I had asked for this, a chance to create my own Theatre. A chance for me to direct the show with audience I felt comfortable with.

I had two messages to put across.

1. How does it feel to go from being happy, successful, worked hard for what you have and are proud of, everything you once loved and a future to look forward to ...... progressing the words "you should be dead/these readings are of the charts of previous, we've never seen this so aggressive in a young active man"

2. What is vasculitis and what symptoms do I live with every day. What have I found challenging, what is it like for my family to witness. The lack of resource out there for us to get our hands on as this is such a rare disease, and with me even worse as it's 1 in a million

I was also going to touch on the mental health impact all of this has had, and in fact is still having which is what the charity is set up for! But alas, due to reasons out with our control or neither am I able to share, the event was cancelled. I was gutted, even though I still tried to put something on, we still had the venue, the food, the caterers etc. however, no sooner had I brought up the ideas I realised, this was only 2 days away, my symptoms flare up with stress, BP as it is, coupled with that, as of the time we were on the call, Monday mid day I had managed an amazing 7 hours sleep sin e my 8 hour treatment the Tuesday before.!! So we left that idea slide....

Not wanting to let people down and aware id been rather cryptic with the way the online content had been released up to this point I hastily pulled the team together and we decided on a social media live video. So being all keen to end the day on a high I sent a post out saying nothing like this will stop me, we're still doing our bit and we'll make it bigger than it was going to be. My little Vasculitis cells weren't best pleased with that and if I thought Id had a bad 8 days since chemo at that point oh how wrong I was. What followed was 4 days of sheer pain, bleed after bleed and a whole load more symptoms that would make my wife watch her grown man provider, protective husband reduced to curled ball covered in ice, blood or tears.

Double back and be realistic. Yes I am going to get my content out but not this Thursday, I'll see you all Sunday. (Learning number 1, jumped the gun then changed the date - you've made a commitment- regardless of the situation, does this question reliability moving on?)

As I'd mentioned on a IG post, I was using the 7th a safety net, then that got moved and now it was all on me going live. TikTok Live went on the Sunday instead. I had never used nor had this app before this day. The social guys had got the charity one up and running. I was totally at their mercy.

I built myself up and got really panicky, didn't know what people would expect, how to come across, let alone how many followers you have views you get bla bla bla. See we're doing it this way so the charity can be recognised with the hash tags & shares, the more followers, the more chance we get of adverts and support for the cause. As it happens, all this got to me and I had a real bad episode 20 minutes before we were due to go on. Head in a bucket of ice cold water before lying on the garage floor with earplugs in to help tinnitus, saline washes from my throat and guts after the sickness bringing up chunks from the insides, and a migraine from hell.

I had to cover my phone so I couldn't see how many people were logged in or what any of the comments were.

I was confident to go on there and share the story of how we got to where we are and what my vision and determination is for the future. Id made a loose schedule to keep on track, I was talking from the heart, sincere, meaningful but also raw content.

Since then I am now having a break for a few weeks/month. I have got the charity set up, the socials are in place (and it's not me running all this by the way, I've had a few people comment I'm not looking after myself if I'm this busy, or that i must be on the mend to be able to be doing this) in fact I have had the worst 2 weeks in the last 9 months. The pain and condition I am in just now is excruciating.

Thank you to all those who have supported so far, I hope you enjoyed the live session and your raffle prizes if you were a lucky winner. We will be editing that video and releasing it stages showing the hidden messages I put across.

Best of Health to you all. Love W.x