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!!!
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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
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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
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Embracing Life and Death

How did I ever have time to work?? Blimey, crazy times! Have been so busy have barely even been on facebook OMG! Anyway taking advantage of the fact that I am awake early (for me) and Tilly snoozing beside me, nothing pressing to do today so thought I would post a blog as it's been YONKS!
Well no drama to report, which is good right? I have settled in to this life of medical retirement quite nicely thankyou! Hospital wise I am going once a month for blood tests, first one was last week-everything totally normal,YAY how cool am I?! Ha 6 months to live my bottom!!! I have changed the language I use now in order to prevent my words taking effect on my cells on some spooky deeper level....................Soooo I have been given a prognosis based on my scan result and statistics, that is all (and to quote Monty Python's Spamalot " I'm not dead yet!") This is not denial, I accept the fact of death as in fact everyone needs to at some point BUT I am not going to passively resign to it either........making sense? possibly not! I am hoping for another scan in the next couple of months, just out of curiosity really, yeah ok and to see if I have chanted the mass away......
So, Wales....flippin' amazing experience! Obviously a course called 'Embracing Life and Death' was ridiculously timely (except not ridiculous actually spot on and how it should be) but also the experience of life on an Ashram was just awesome, and something I thought I would have to travel half way round the world to experience....hang on need more tea..
I arrived at the Ashram Wednesday night half an hour late but that soooo wasn't my fault! It really is in the middle of nowhere, but absolutely stunning. I was greeted and shown to my room that I shared with one other girl. Then joined everyone else in the dining room where they were eating in silence, proper silence - mouna. Obviously feeling a little bit wierded out and apprehensive but going with it (oh and soup was lush).
Long story short, found out that evening what the program was and slightly suprised that from the next evening there would be a week of silence! Again.....just going with it.......So, this was the schedule.
5:30 in the actual A.M!!!! bell rung to wake up
6:15 into the hall for silent sitting
6:45 Hatha yoga
7:45 Chanting
8:15 Meditation
8:45 Breakfast (Starving by now!! YUM porridge with fruit in mmmm)
9:30 Karma yoga (work on the ashram) I cleaned toilets and floors
11:00 Tea break
11:30 Session with Swami - would start with chanting then usually group work
12:30 Lunch
15:30 Yoga Nidra (psychic sleep, is like an intense guided meditation)
16:30 Tea break
17:00 Session with Swami (chant first)
18:30 Soup
20:00 Satsang (Q's & A's) and chanting
21:15 Bed
So yeah - not relaxing as such! By day 5 I was exhausted and quite worried that I was proper ill! But day 7 we had a day off, so lie in and no housework!! I accidentally broke silence when the bell rang at 10am for brekky and I was like "No effing way! its not ten o clock!!" I was gently sssshhhhd by my lovely room mate, but yes I had slept like the proverbial dead and man I had needed it cos after that I felt ok for the rest of the time (massive PHEW!! am actually still ok!!). There were nearly 20 of us on the course, 12 from outside and the rest residents of the Ashram, everyone had a different reason for being there, it wasn't particularly for people in my situation. Obviously we weren't silence in our group work that would be well wierd, during that time mostly in pairs we explored issues such as grief, regret, fear of death, euthanasia.... the conversations flowed easily and then we went back to silence so you were able to really digest and reflect without distraction. We also wrote a will, made a bucket list, visualised our last hour, did role play of death scenes, watched films about people dying there were lots  of tears, hugs and OMs :)


On the last day of silence we had  a fire ceremony and Mandala making, from 8am til about 12:15 there was constant chanting around a fire, it was a mantra to overcome death. It's not about living forever or anything but more asking that I may not leave this physical plane until I am spiritually mature, and then I will fall from the vine naturally........that's a pretty cool sentiment I think. The mandala was a big circle of sand encased in a thick rope, we had a load of flowers, shells, stones, beans, powder paints and more to place on as we wished, the only criteria was to start in the centre and move out.... I was merily making mine all beautiful with daisies n that and even an NZ Paua shell, I found a Budleigh pebble in my car and put that on - made some hearts out of bright spices, la la la, went to have a cup of tea, came back and BOOM! there was a skull right on my path! Honestly 360 degrees of circle and there's a skull there!!? Fine well a little thing like death wasn't going to stand in my way of reaching the edge of the circle, so I made a green heart right by the skull (green being the colour of the heart chakra) then I sprinkled a path of bright paint around the skull to the edge and ended with an identical circle that I had begun with.....phew! Dudes it was intense!! The mandala was beautiful but once it was finished and admired it was divided up and surrendered to NSEW, shame to destroy it but impermanence and all that :)
In summary, what did I get out of the retreat??

• Inner peace!! Seriously!!
• Chanting works wonders for me to still my mind so still doing that
• Acceptance (about day 6 reality really hit)
• Embracing the moment
• I have let a lot of rubbish from the past go
• I have a list of practical stuff to do
• Really knowing how I want my death to be, is same as birth plan - need a death plan!
• I met some amazing people
• I know the Ashram is there if I need to return at any time
• True appreciation of the ones I love (REALLY missed my pup)
• Its changed my eating habits for the better
• Learnt more about Yoga but also chilled out that I don't have to know it all!
• Oh and I kick ass at cleaning the a squat toilet!

I could go on and I know that none of this does my time away justice really but suffice to say it was worth it and then some!
In other news, I have gone GI Jane hair wise- eek! Is better than wispy haired scarey witch look tho, and it is growing and yes its brown again.......tried my wig on to go get my nails done but I just looked like a nob so sod it. ooooh and booked a week in Spain with J!! one week of lounging around reading and getting tanned right up - bliss!
Oh and haha I am awaiting my disabled parking badge! yeah baby! silver linings!!
TTFN
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Tilly :)

Well, I literally have not had time to scratch my bottom for like the last 10 days! It's all a bit of a blur to be honest but anyway, things have however unfolded beautifully and i suppose as things should.....

First things first welcome Tilly!!! Come on! She is clearly the cutest thing EVER!! The story is that I became increasingly obsessed with spending time with a dog, my mother was not quick enough to surrogate one for me, the choccy lab owners too slow to lend me theirs......and then my lovely friend  pointed out that I hade been given money by a couple of extremely kind hearted people to basically start fulfilling my buscket list so why not just get a puppy!!! These photos are taken within 24 hours of that conversation! YAY!!

Tilly has MASSIVELY improved my quality of life, I was previously finding it hard to get up before lunch time as I would wake up, remember what was occuring in life and just think sod it and go back to sleep.......now I wake to this little bundle of fox like fun and I am up and out on the beach!

We have had lots of visitors and socialising this past week, it's been my darling's 40th, loads of fun but exhausting! And I have ended the week with a chest infection...dont know why I have been so reluctant to go to GP and get antibugs after the myriad of pharmacuticals I have ingested the past few months but anyhow I conceded yesterday and after 24 hours feel loads better.

Its hard to know though how to be, on the one hand its like piss off everyone just let me have a cold like a normal person, except a) dont get colds etc just get big shit like cancer and b) OMG am I normal person or are all the lung toxic chemo drugs I have had ensured that any infection will turn into pneumonia and actually kill me...........anyway I think I am fine.

Am definately caught between being reckless (ooooh wore no sun protection today) attitude of stuff it - its not going to kill me! On the other hand needing to be in optimum health to feel good for as long as poss...........hmmmm maybe 10%/90% Is good enough??.

Well the universe has intervened and I am booked onto an 11 day yoga retreat called embracing life and death starts 10th august, looks right up me street......and another wonderful mate has paid for it (am surrounded by soo much love, eg this ,plus cards, books, flowers, dvds, paintings, yummy e mails, wonderful thoughts it goes on.......)

Namaste

Sim

short and sweet!

Ok have just written a massive blog blahing on about divine intervention etc and analysing my day, I clicked post and it disappeared into the ether! So am obviously sumising that the Universe wishes me to keep it short and sweet so I will now bullet point what I can remember of the lost blog:

• Saw Dr told him no more chemo
• Had line taken out
• Got more info re Brentximab and considering it
• Felt bit wierd about surreality of above conversations
• Very comfortable with decision despite being world's crappest decsion maker
• Asked brother to kidnap mates choc lab for few days
• felt sorry for self that wont see 40 and that this upcoming wedding anniversary (10th) proabably last
• Decided to man up and go for a bike ride
• Oooh and nearly forgot, am very happy my son has taken to wearing my rainbow beanie :)

That is all! The executive summary!
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