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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Decisions, decisions

This was me a year ago, just back from a run, super fit, happy , full of it! - and totally posing in silly manner that is only really appropriate for teenagers! Anyhooooo I am making it my mission to get as fit and strong mentally, physically,spiritually as I posssibly can before I you know er leave  this mortal plane, expire whatever! So check out my plan- am working in chunks of 3 months then review as I really dont see that things could change (deteriorate) that quickly:

• Present self to cancer club tomorrow and request that my PICC is removed which will then allow me to play the piano again,haha, no seriously I can play badminton, do pump class, go paddle boarding, soak in a bath, go to a waterpark and ride on the slides n that. And also will feel a bit less of a patient - bit rubbish that my hair is still thin and chemoey but hey at least I have a bit left...
• Book myself on a week's retreat at a place in spain called Kaliyoga where you do yoga (no shit!) and juice detox type thing with lots of yummy therapies on top and stay in a tipee too! Aim being to embrace massively healthy diet, you know, probably vegan, no processed foods, juices, no caffeine, no alcohol, bugger I might as well be dead oh oops I'm going to be! The aim of this lifestyle overhaul is not  an attempt to cure me but to be in optimum health (silly cancer aside) again in a holistic sense so that I can fight as long as possible and feel good as long as possible. Also the retreat will give my yoga and meditation a boost and with willpower I will practice consistently on my return. If in the process of this I extend my life then hurrah but mostly I am looking for peace, clarity etc.
• Attend a 2 day course at Gaia House which is a Buddhist Centre nearby, the course is called living with illness, looks good:

"Facing illness and loss in our lives can bring us to a moment when we need to slow down and look deeply into our lives, a time to find acceptance of a diagnosis or the death of a loved one, to review our healing and coping strategies, and make peace with our mortality.  The practice of insight (vipassana) meditation will be used as the basis of exploring this relationship to pain and illness.

The retreat provides an opportunity to explore where we are in each moment of our lives, to listen to ourselves and each other from a heart that accepts both ourselves and others without judgement.  Developing greater mindfulness in times of transition, challenge and confusion can enable us to find new ways of relating to our daily lives.  The retreat includes guided meditation/reflection, group/council process and contemplative writing. "

• Definitely start training for the Powderham castle 10km in September, anyone wanting to join me let me know!!
• Book a holiday in the sun with my boys
• Do a one day Gersen Therapy course which will compliment the juicing stuff

So, yeah a lot to do and get organised. Will be telling the Docs this week that I don't wish to have any more chemo, I will discuss the antibody treatment (is palliative option) but i doubt I will go there. People are being so amazingly supportive and I am receiving some wonderful acts of kindness. Thank you Thank you Thank you!!

Feeling ok, up and down, mostly accepting and then occasionally hugely sorry for my self. But I am 'happy' with my decision. Right, off to watch the final of the apprentice, happy days!!

xx

It's curtains

Saw my Consultant last Thursday who gave me the low down on my options, knew things were bad when he took us into the 'quiet room' and brought the specialist nurse with him.......we spent about an hour with him and I asked him to please put it all in writing as was pretty overwhelming amount of info to take on. Today I got the letter........
"hodgkins has enlarged with significant enlargement of the mediastinal mass.................explained to her that her prognosis is now poor and the chance of a cure is small"

The letter then outlines 5 options:
a) do nothing (?6 months to live)
b) more chemo that has 50% chance of working, if it does work then 20% chance of being alive in 5 years (30% chance dying of chemo)
c) Stem cell transplant - will not cure but will allow d)
d) monoclanal antibody - giving short term response 0f approx 10 months
e) if b,c,d work then could go for bone marrow transplant

I have just condensed 3 pages into the above! but basically it's curtains! Am now pretty much decided on option a ...........and then embracing the hippy stuff :)
I would rather die happy, centred and accepting than ill and miserable after tons of yukky treatment it just makes more sense.

Not sure that I have really taken all this in on an emotional level, it's hard to think straight. Lots to consider in the planning of the next few months.

Right now just sending BIG BIG love to everyone I know xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Limbo scmimbo

Am in actual limbo, it sucks a bit. Kind of want Thursday to just hurry up so I have battle plan from consultant but also don't want to know what's ahead cos I am proper scared. One of the chemos they are considering is in another 'centre' (Bristol? London? who knows) one is experimental or they may PET scan me first and then? Considering just over 2 months ago I was told if I didn't have treatment then in 6 months there were odds of 50% I would not be here, I am beginning to feel a slight sense of urgency and the waiting around is hard.

Anyway the good news is that in order to make me feel better my mum is going to be my surrogate mother for a doggy - yay! She will get a dog and I will 'look after' it quite alot.....how cool is that?? Have been looking at some dogs online tonight at rescue centres, currently favouring Pip and Bill! Am also going to see if Jim'll fix it for me to go ride with the red arrows :) There is a charity called willow that gives special days out for special people like me.....so altho the red arrows may not say yes, there is a company that will take you up in a jet plane and do tricks n that which would be ace fun.

My dear heart changed my PICC dressing tonight and advised me that I would probably have a hickman line if I were to have longer term treatment, poos and wees I don't want to be doing this for months and months. AND my hair is still falling out which is so out of order! If the bloomin treatment hasn't worked then at least my hair should be preserved! Arse Biscuits!!

Hmmm random blog but that kind of reflects my mental state right now.....

If there's anyone out there, please pray, chant, cross digits, think positive, whatever you can think of! And if that doesn't work please dress in rainbow colours for my funeral :)

Love and Light
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