Sun, sun, sun here we come..........

Two  weeks in the sun and then home to the sun! Get in!

I am on the train back from the airport (took the mac with hopes of writing  my book during  cool siestas in the villa – I failed on both the writing and the afternoon rest) We have had a blissful time, reading, eating (it was a total carb fest) drinking and generally relaxing. It feels good to be back though I cannot wait to see Tilly J

Oh yeah, we both read the fifty shades trilogy – disappointed, end of.

I was a bit paranoid about getting  some deathly bug from salad or fish or something. Then I realized on the day we went to a water park that it coincided with the most likely time to have low blood counts and at risk of infection if I was going to be after chemo-lite. The park was packed and I was pretty grossed out by the idea of swimming around in pools of germs and snot,  we still managed to have an ace time though! Oh and obviously I didn’t catch any thing yukky and die.

Unfortunately though, I discovered that I now have anxiety issues about any potential danger, accident death etc. I was properly scared on even the tamest rides. Every slide I imagined me knocking my head, me flipping over and breaking my neck. I mean I have never been one for scarey rides but I have definitely had more guts than this before. I mean, oh my God, when I did that loop the loop in an airplane  I was quite scared, but I just took deep breaths and thought ……well what’s the worst that can happen, oh yeah I might die, ah but I am dying anyway sooooo….it will probably be pretty quick if I go this way and it will quite legendary! Well now I am officially now a wuss.

I also made myself my own laminated medical alert (Alerta Medica) card before we went, very proud of myself, I translated my medical history (Historia Clinica) in to Spanish and even highlighted that I have difficult veins (La vena difficil) Check me out! I am basically Spanish!

Ok am not at all Spanish, I am now shamed by my lack of linguistic talent. You see I would have learnt in the last year but I didn’t see the point ‘cos I was going to die! Yes, that old chestnut! Makes you do things you might not usually do and puts you off things you probably would do, see what I mean?  We are definitely going to Spanish lessons as soon as possible.

Actually I have ended up with an infection, an ear infection though – I spent lots of time under water with my lovely new goggles (thank you Tilly – human Tilly that is not canine Tilly). Yeah it’s pretty painful and usually I would just dose up with painkillers and squirt a garlic capsule in my ear but now I am hyperchondriac woman I will actually go and get some anti bugs from the doc.

I have an appointment in Bristol with the bone marrow man on the 17^th August to discuss options. So I reckon I will be looking at hospital end of September, that’s cool, I can go to my school reunion, see Jesus Christ Superstar and maybe Matilda again (have earnt a special day out courtesy of the fabulous Willow Foundation J) It will be autumn I can wear hats for my baldiness then emerge in the new year cured and lovely!!

Live long and prosper xxx

what now?

I have been contemplating what words of wisdom and insight I could share since being given the news that I am in remission, I have waited more than 2 weeks for inspiration..and disappointingly it hasn't come. In fact it's a bit mundane, the reality of being mortal after dancing with death for a year! I have had to make sure that I keep it real - yes siree I will continue to buy brightly coloured novelty toilet roll 'cos dammit it makes me happy, and yep fresh flowers in the flat at all times are a must! And no I will not fall in to the trap of thinking oh well now I may well live a while I can buy ornaments and furniture to adorne my home...I'd rather have manicures and holidays than a new sofa so no I say and no again..I must not let living change me.

Because in all honesty dying was extremely liberating! Of course I totally get that I was extremely fortunate to feel really well all this time and be able to do pretty much what I wanted so there has been no suffering as such. But the mindset it gave me was refreshing......when you are literally facing death the day to day stuff fails to stress you out, because what's the worst that can happen? Yes dying was my get out of jail free card with endless possibilities....

Oh and another thing, now I have anxiety about all the ways I might possibly die! The certainty of dying from lymphoma had a fairly predictable course which I had sort of got my head round having had plenty of time to think about it, talk about it and well, accept it.....now there's a world of different ways I could die, just the same as other mortals! it's bloody scarey stuff!

Anyway before I risk sounding like an ungrateful twat, I am absolutely blessed, truly. I have had the most amazing year, it's such a shame that we all don't get the chance to take time out from 'real life' and start ticking off our own personal bucket lists. I do feel luckier than anyone in the world to have had the opportunity to live my last year and at the end of it be given my life back! It really is nothing short of miraculous.

Someone asked me the other day how this experience has changed my life, I gave him a pretty lame answer  something about never letting work be everything, saying yes to stuff, having fun.......It made me think, and try and actually condense into a few sentences, well bullet points actually, how it has changed my my outlook....

I have learnt the true value of love and friendship

I am settled for the first time in my life, I know that the grass is not greener on the other side

Life is for living

There are no excuses not to make the most of yourself and your life

Grumpy people suck and will not be tolerated

Do not stay in a job that affects you negatively

Kindness is everything

The NHS kicks ASS!!!

I am not afraid to die, it's inevitable and it's ok!

I will keep moving and active for as long as I can

So, what now? Well I am about to have my 8th cycle of Brentuximab and will continue to do so until, fingers crossed I have a stem cell transplant...... To prepare for the battering my body will get during this process I am getting as physically fit as I can and mostly living on 3 tonnes of fruit and veg a day. However I fully plan to fall off the detox wagon next week when we go to Spain...... you've gotta live a?

Hugs and stuff

xxxxxxx