Embrace it!

Happy New Year!!! We have had a great festive season, loads of fun and good memories:) I was spoilt rotten at Christmas, nice. New Year's Eve was a blast! My brother threw the bestest party with a short break in the middle for fireworks on the beach and seeing in the new year with all the Exmouth revellers. Everyone embraced musical statues- made me proud!

On the 5th of January I merrily rocked up to my Consultant appointment in order to, as per discussed in November, sign consent for the Brentuximab treatment and set a date.......or not! The treatment was free initially (is only just licenced) but is now quarter of a million pounds! Making it the most expensive treatment he has ever come across, it will go to a board for a decision but they usually make decisions about ten, twenty thousand and he has made it clear that this treatment is unlikely to be approved I mean it's not even a cure so.....there it is.

So I have to adjust the trajectory for this year......It's kind of fine, I mean the  Brentuximab was meant to prolong my life for perhaps ten months but wasn't a cure. And at the end of the day, I decided against it last year which was the right thing at that time. I was supposed to be pushing up the daisies by now and look at me - alive and kicking!!! I have had 6 months of living life to the full, not being a patient and having the time to get my head around my situation. Ha! Also I have managed to increase my life expectancy somehow......Doc said I had less than 50% chance of being alive this time next year....well Hellooooo!! - In July I had 6 months! Apparently my 'disease is behaving unusually' ie slower to grow - great! Maybe I am doing something right (woman cures cancer thru dancing and laughing)  I am also comforted by his reassurance that I am not going to suddenly drop dead (phew) and that there will be a gradual decline in my health over a few months - which so far there is no decline- yessssssss!!

So, as advertised on facebook - actual massive party on 7th April- 2nd wedding plus my pseudo 40th birthday party! It's totally going to rock!!!

OMG!!! Zumba!!! so brilliant!! Also have been doing street dance classes, loads of badminton and riding my bike with Tilly, yes that's right she is competent at running along beside me, it's awesome! In a couple of weeks a few of us are starting salsa classes, life is fun! Say yes!! Who actually cares if you look like a twat?! Embrace it!!

Love and Hugs 2012 styleeeee
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Ginger Whinger

Emracing one's own mortality can be rather liberating. I have cultivated a very F@#k it attitude, and a YES to life aproach. Most of the time this serves me well.....as I have mentioned I have a LOT of fun, I don't get stressed about small stuff (much), when suprised with a trip in a stunt plane I take a deep breath or two and FORCE my self to keep my eyes open :) I have an outrageous collection of Christmas lighting on my balcony, this might be my last Christmas...    F@#k it!!!! However last week this afore mentioned attitude led me to be hauled to safety over the sea wall in Exmouth by two elderly gentlemen who had tried to convince me for some time I was in some danger from the incoming tide, and I was in fact cut off....any way all is well that ends well :) But today my foolhardiness has led to me being ginger, yeah yeah I 'll just dye my hair at home it'll be fine! NOT FINE!! Am ginger, which appears to be a gift that keeps on giving- I look even fatter, and like I have less hair than before! Hurrah!!!

Ah Fuck It!!!!

:)

Keepin' it real (sorry 4 dreadful layout)

Well what massive, epic fun has been had this month! I posted re Brighton 10km run previously- well yep did that - oh yesss in just over an hour which I was very very proud of:) BUT the weekend was soooooooooooooooo much more!! here follows a brief synopsis:

Friday- arrived in London straight to Covent Garden where a huge Xmas tree and reindeer in lights welcomed us to a proper winter wonderland, few wines then..........Hailed a rickshaw.............

What!!? Backstage at the theatre to meet the star of Rock of Ages!
• WICKED show!
• Saturday- manicure in Brighton.......followed by crazy girly mini house party
• Sunday 10km along sunny seafront
• Fish n Chips and champagne on Brighton Seafront
• Massive mini house party!!!
• more champagne and giggles (Thankyou Mrs P, Q & L)
• Monday- WTF!!! Suprise outing for moi in stunt plane!! loop the loops and all that!
• Tatoos............
Tuesday- home to newly IKEAD flat :) HAPPY DAYS!!!!!

Then some quiet time...........then ................best party ever at the weekend, mate's 40th all fancy dress, more fun than you can shake a stick at! please see pics!
Meanwhile, dog remains uber cute and my best mate:).....new flat is just awesome...playing LOADS of badminton and doing street dance classes..... I am a happy lady!
Inbetween frivloities have contacted Dr re starting Brentuximab asap.... have decided that I haven't got any reason to put it off....plus would mean a lot to my beloved to get on with it. Have been reluctant cos I guess it kind of signifies the beginning of the end...sorry to be grim :(  Have to admit that I have been having some minor symptoms which does give me a bit of a wake up call. Still awaiting the magic weight loss symptom which thus far has kindly eluded me! Bastard!!!
I really love my life right now and I know it wouldn't be the way it is without the culmination of unfortunate events...so it has to be so...
Keep it real :)
And BE HAPPY
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
xxxx

Reality Check!!

So I went to see my Consultant on Thursday for the results of my scan….disappointingly I have not magic ked the mass away, bums! It has grown BUT rather slowly…I don’t have the exact figures as the CT scan had not actually been reported on so my doctor read what he could of the images. I could see the mass quite clearly on the screen – quite helpfully it is growing away from my trachea and heart over to my right side (no I don’t know why they can’t just cut it out – it doesn’t work like that!!) Doesn’t appear to have spread anywhere else and my iron level is better than ever, all bloods normal.  Sooo plan is to start Brentuximab in January (didn’t want to risk being ill over xmas), it’s a new antibody treatment and may well give me temporary remission whilst not being as toxic as chemo – 30 minutes every 3 weeks for 3 months. Well you know, its fine I have nothing planned for January J. I asked him if I should give up wine and chocolate he replied he would definitely not advise this and went on to add “In fact you should be pampered with only fine wine and chocolate from ‘Hotel Chocalat’ – Physician’s orders” ; I think I might be a little bit in love with him.

Also this week we are the proud new tenants of a smarmy pad on the Marina, someone is definitely looking out for me, I started phoning places on Monday and had the keys on Thursday. It’s lush and instantly feels like home! we are very fortunate to have been donated some quality hand me downs from our mates who have just done some interior updating, so we are sorted! We have 2 bedrooms, a nice big living area and a balcony overlooking the boats, I can literally just sit, chilling out and observing the nautical world go by…we are even closer to the sea than before, and we are next door to a pub that arguably does the best food in town (Scampi!! Get in!!)  and a great pint of ale.

Have to admit that the scan results have been a major reality check for me and I am struggling to keep upbeat, I am not concerned that this current doom mode is permanent but I do feel a bit blurrrggh…. Was supposed to be going out grooving tomorrow night but just feel a bit old and passed it, this is probably the exact reason to go out and let loose but I haven’t got anything to wear and am not quite embracing my current ‘look’. Yep, am surely feeling a tad sorry for self, it will pass.

Oh yeah, am fully doing a ten km run in Brighton next weekend! I am pretty much relying on latent fitness and enthusiasm to get through it as my training has been somewhat ad hoc shall we say! We get the train to London Friday, see a show and then stay near Brighton until Tuesday, should be bags of girlie fun, nice! Then the week after I am back at the Ashram for a few days, just to top up my peace of mind and centeredness.

Decided that apart from more sunshiney holidays what I need in my life is regular massages and badminton (am easily pleased) so will set about making this happen asap! I am still enjoying being on the beach everyday, several times with Tilly, seeing my friends and all the laughter., ginger lattes, wine and obsessing that this entails, chilling out with my husband- just us two, and then regularly bugging my family at my ex flat that I still have a key for and can intrude at any time J My son has a lovely girlfriend and its so ace to see him being so loving and caring, he is on the right track….I am so proud, I love him so much xx

Just for the record, I am so glad I didn’t opt for more treatment back in July. It was such a massive decision to make and one I did not feel prepared for in order to make. But it was so right. I really do believe that there have been times in my life where a decision has come to me from a higher source. If I believed in God it would be him. What I believe is that there is an aspect of ‘us’ that is connected the  divine, all knowing something….and that if we can just get in touch with that energy beyond our ego identity then we know what we should do. When I decided to come back to England I  couldn’t rationalize it in usual terms, I just knew it….and it has turned out to be the best move, and I have been happier than ever since then. It’s the same with the treatment deal, I knew what I should do without knowing why. Now when I look back and contemplate what life would have been like with the standard treatment aiming for cure, I made the right choice 100 million percent! I wouldn’t have had Spain, Corfu, the Ashram, my London jaunts, crazy dancing nights, Tilly time, I would have to be afraid of anyone with a cough or sniffle and maybe die anyway! Rubbish! Nope! Give me bags of fun and yoga and my days are happy.

Ok – well I think I have cheered myself up! Excellent! Peace out y’all! May you be well, may you happy, may you live in peace.

Om Shanti J

Hmmmmmmmm

Ok, well basically all good! Just returned from Corfu which was bags of fun :) Also ace to be home to my cosy bedroom, ace flat and crazy puppy!! 
Have had an appointment for scan 2nd November (lets all visualize together...."this is most unusual...but the tumour appears to have, well, shrunk.................we need to do more tests..." what do you think??? But you know it's ok I am prepared for the more 'realistic' conversation; whatever , it is at is is! 
My current, small, sadness, is that I don't see how the story ends.......... I mean for y'all it's easy, slightly  tragic, yet bitter sweet etc but for me..........what will my son's life turn out like, will my bros get married? will my parents be ok? how will hubby be? what about my mates and their families how will they expand and proceed?? I want to see it all, and I know I won't....that's a bit sucky. Having time away with my mates and their baby was so nice and I love this child and I feel a bond with her and I am sad that I won't see her grow and have siblings and I want to be in her life and yet I know she won't even remember me....bugga, even my dog will out live me!! 
Well anyway, despite this mini rant I am actually really happy! I am really quite relieved to have these thoughts to prove to myself that I am not in denial about what's happening, if that makes sense!
Peace out!!!
xxxxxxxxxxxxxxxxxxxxxxxxxxxx
PS X Factor is proper pants this week!!

I forgot!!!

Oh  yeah in the midst of all that navel gazing I forgot to update re my latest consultant appointment! well..................

• bloods all totally normal (oh yeah its ya birthday da da da da)
• He was pleasantly suprised at my general wellbeing :) (IN YA FACE CANCER!!)
• pretty much expected me to be unwell by now (ha!! doubt it!)
• happy to scan me again ........and then posibly PET scan if .....ooooh has stayed same/grown minimally / ahem...disappeared....just to double check what we are dealing with (expanding scar tissue? unlikely but not unheard of!!)
• talked about possible antibody therapy -but obviously if scan fine then see above!
• Have told him that if it has gone ..then I will share secret..........ommmm!!!!

peace out
x

Happy Days :)

Yesterday I truly realised that I am totally content with my life, I am happy, I have amazing relationships and interactions, I do not need for anything, I feel energetic, I wake up to the sound of the sea, I am sooooo loved :) my dog rocks! me and hubby in good place, my son is like proper cool now, I have a clear mind, my family are ace, I don't have to go to work! blimey it goes on and on! I have massive gratitude for my life, there's no squeaky wheel......just contentment! So at the risk of sounding either like a nutter, a hippy or high on something......I AM SOOO HAPPY :)

However, I am also rather spun out.......hmmmmm is it really this easy to accept that I might not be here this time next year or that at some point I will probably feel really rubbish? Well it feels easy, I mean I know what potentially lies ahead but I just can't seem to worry about it now or be sad now, I just don't see the point! I have strived to live in the now for so very long and I do feel I am there, I highly recommend it! But on the other hand am I just in denial? Am I? I don't think so, I have been through enough to know shit properly does happen! During the retreat I did I really felt like I stared death in the face (and btw she was quite lovely and kindly) and it was an amazing journey and process it just seemed to sort me out on many levels. I still chant nearly every day and just 10 minutes a day sorts me right out. So what brings this on you may ask, well I went to the Ashram again for weekend with my brother (it was obviously fab) and there I met a young man in a similar position to me, but he is fighting with all his might to do everything possible to cure himself. And I felt quite guilty that I wasnt doing all that stuff and on the contrary spending my money  and kind donations on holidays and puppies and fun rather than searching for a cure.....I felt a big should and have thought a lot about it. I suppose one of the biggest factors for me is that I really trust my doctors (and research does show that has a significant effect on positive outcome) and ok yes they are going to keep offering chemo cos thats what they know, but on the other hand they have never tried to talk me into something I dont want to do, on the contrary have been exceptionally supportive and I feel that I have been able to be a true partner in my own care. Plus of course after 12 years as a health professional I have seen that the majority of the time the patients best interests are paramount, I have never been involved with treatment or care that was with any other intention than just all good. So, hmmm where does that leave me...still happy but a little unsettled. You see if I really believed that there was a cure that would allow me to continue quality of life and longevity and was guaranteed say over 80% I would do anything, but it seems all the treatments conventional and alternative all have side effects or time, money factors with very little guarantee of good outcome. Again having worked before my training since 13 in care homes and then hospitals I have known for a long time that clinging on to life for the sake of being alive was not for me.....BUT am I just giving up too easily!!? Right that's enough, answers on a postcard please to me!

Anyway, Spain was fab!! Have big night on Wednesday as is my little brother's birthday and we are all having a family meal out then he is supporting an ace hip hop band- its going to be so fun!! And even tho I look like a big fat tanned mr potato head I am still going to rock the party :) Oh and Corfu Friday! Yeah baby!!

Have started training for a 10km run in Brighton in November so hopefully will be all fit and lovely very soon! Ok gotta go in to town for supplies, am official house bitch now so have my chores to do.....

Massive LOVE
xxxxxxxxxxxxxx