Author: JB

Club Tropicana….drinks are free…..

Fun and sunshine – apparently there’s enough for everyone. FFS, I used to love that song but now it would seem that everything is a constant reminder of what is was once to be young, carefree and foolish – Oh and I was so good at all that stuff! I actually find it quite irritating that the youth of today (well my youth in particular) dont’ seem to take full advantage of the ‘be young, be foolish but be happy’ slogan that I bandied around with such willingness!

It’s different though now I guess. Now any half sensible person has to concern themselves with the risk of staying out in the sun too long and catching those ultra harmful UV rays. The fun stops here as they say. The oncology unit often lecture me when i rock up there sporting a healthy sun kissed glow and press leaflets into my hand about secondary cancers and the risk of burning when you are a chemo patient etc. Slip, slap, slop and all that.

Don’t tell them…..but I’m sitting in the garden and haven’t taken any fecking precautions – i’ve not even popped my cowboy hat on – I have however ordered a new cantilever parosol from wayfair as it was recommended in the Good Homes magazine so I am trying…….really trying.

I toyed with the idea of going to one of the festivals today but the practicalities got the better of me. The young me that still remembers having fun wanted to join the youngsters and go the food festival at Hylands today, or the BBc thing in Central park or maybe just head to the beach for a bit….But the other me, the 51 and 1/2 me thought about the crowds and the toilets (alot about the toilets) and the fact that I would probably want to go lots and they wouldn’t be very nice and then there was the potential risk of catching an infection even if it was outside and, and, and……..you see?

so i thought feck it because as I’ve already learnt a few hours mingling can result in a few days on an isolated hospital ward. So I’m saving the money I’d no doubt spend on overpriced items and have resigned myself to the garden instead. I’ve whacked the tunes on and poured my self a cider (alcohol free of course) into a plastic cup and let it get warm in the sun so that I really feel I’m not missing out. I might piss in a bucket later if I really feel I want to encapsulate the whole experience. The dog seems happy at least.

Signing off for now….

JB x

Learning to love the small stuff.

I wouldn’t suggest that people accuse me of being positive as such but I am beginning to wonder if all this breezy positiviy is a bit much for some people in light of the shitty times I’ve had. I get that, I really do. But I really am grateful you know. I’m grateful for the chances I’ve had to really learn to appreciate life. See I don’t know how long I’ve got, noone does, do they really? But when you know you won’t live to a ripe old age and that each year is not a given it makes you think about it a lot more. It’s as if I’ve got that ‘A beautiful world’ playing in a sound track or am the star of a soppy old James stewart movie realizing that life is not so bad and that lots of people care. It’s been a long time coming but I’m learning to love the small stuff.

My current treatment plan is kind and allows me to live a relatively normal life. I get nervous around coughs and sniffles with my consultants words ringing in my ears ‘it’ll be an infection that kills you not the actual myeloma’. That is the main issue with a blood cancer for many of us – once you get over the shits and giggles of chemotherapy and the woes that brings with it, you have to deal with a repressed immune system that’s further exacerbated by the fact that the cancer attacks your white blood cells. FFS how I am doing this sober is beyond me at times – inner strength and all that. there is truth in the saying that what doesn’t kill you makes you stronger!

I need to avoid busy places but you have to counter balance this with trying to carry on as much as you can. The way i see it is if i want to take the risk of attending a play or a concert then i will but theres no point traipsing round the supermarket every week when i can get by with click and collect. I avoid public transport but then I’d always rather drive anyway – plus it’s still quite novel for me after years of being too pissed to find the car at the end of a night let alone drive it!

I have some super little injections that are kept in the fridge and upon releasing into my fat tummy once a week boost those damn neutrophils to keep me out of the danger zone and hospital isolation. They don’t appear to be doing much for my platelets and that is a current concern but I know that the team will monitor it closely and put something in place if necessary. The care I recieve is amazing and I have complete faith in them.

I have learnt that you find faith in the strangest of places and kindness often comes from hearts that you didn’t expect.

signing off for now…..

JB x

Hold On Pain Ends

Just when you thought it was safe to go back on the internet…………

Life at times is a challenge and as I tell anyone that listens, you have to find your own way of making it through. When I could no longer find solace in the bottom of a wine glass (or box) writing about things in a blog really helped me to make sense of everything and gave me a way to pour those feelings out. Anyone interested in my previous ramblings can access them on https://ronregrufflesandrioja.wordpress.com.

I realized my last post on that site had been posted a long time aog and it didn’t seem fitting to talk about some of the more recent stuff on there. Alot has changed. It had been a long time coming and I guess I couldn’t write about it for a long time. I’ve processed it now and this blog is created in the hope that I can give some love, light and laughter to those around me and those going through a similar experience to me.

I’m not going to get it right all the time. Hey, i’ll be happy if I get it right some of the time. My experience is just that, my experience. My thoughts are my own and how I handle things is the way I deal with them…….not always the best way but at least I’m not trying to compete with Georgie Best anymore!

so this is what it is – just an introduction. A hello if you will. The first tentative steps into telling my story……everyone has a story – maybe you should tell yours.

Like me it’s not straightforward. It’s quirky and complex and all a bit jumbled up. It’s my outlet for dealing with all of it. I’ll talk about alcoholism, sometimes I’ll mention the cancer and it’s gonna have a hefty side order of what’s it like getting used to life the wrong side of 50. i’ll make no excuse for sentiment as to me the world has become a beautiful place because I’ve finally found peace in being who I am and I’ve discovered that there is alot to be grateful for.

I’ve come across some wonderful souls and this blog hopes to help those who are in not as positive a place at the moment for one reason or another. I couldn’t think what to call it and didn’t want to do the whole ‘myleoma and me’ type thing so I unashamedly stole the idea of Hold On Pain Ends (HOPE) from a lovely lady who hugged me when I cried because my hair had gone. I was trying to be so tough but it did matter and I did hate losing my hair even though I told everyone I was fine. A moment of kindness that will be forever remembered because it’s the little things we do in life that matter…..like helping someone else make it through the day.

signing off for now…….

JB x