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

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
xxxxxxxxxxxxxxxxxxx

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!
x

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
x

bummer

Went for CT results today- not what I expected
The 2 lots of ESHAP chemo I have had have had no effect, like none. There is no plan as yet as I appear to be beyond standard protocol now. I know this is not good.So, no stem cell transplant next week. I see the consultant next Thursday who is currently discussing my case with his peers.....I am looking at a different chemo, maybe an experimental chemo, at the moment no one has any idea......ARSE.
On the plus side we came 3rd in local pub quiz (my first ever) so.......happy days! Won a bottle of wine - hurrah! Anyone keen for next week :)
Actual bummer
x

big day tomorrow

Eeeeeeeek!
Get scan results and plan of action tomorrow, not been thinking about it too much til today now quite nervous. Got my head around intensive chemo, stem cell transplant and one month hospital stay......so that will be the GOOD news! But what if, what if.....bugga I have plans!
x

All good

The glumness didn't last thank goodness! My son's celebration ceremony went well, I am so proud of him.....and it turns out his friends don't think I am at all embaressing so it made him feel better too. He jammily appears to have landed the coolest job ever thanks to a great friend of mine, and spent the afternoon yesterday out on a boat helping out with wakeboarding! I watched him walking off down the road today to catch the train and he is such a different kid to a year ago, he's ace, I am so happy.

Busy weekend socially with lots of nice food, drinks, chats and dancing. Again so grateful for my ace friends and good times. Feeling well physically and mentally.

Quite a quiet week ahead, scan results and plan thursday. Probably go to London Saturday back Monday then Wednesday is hospital time. Starting to think about what to take with me, my little brother has lots of films and comedy for me, a friend is lending me a box set of 'cold feet' which will see me through a few days, mum is insisting I get into crosswords hmmmm but I draw the line at jigsaw puzzles! I have an unstocked mini bar for things I may fancy, might treat myself to a Roberts digital radio and maybe a 3D nintendo jobbie?? I might just ask to be sedated for 4 weeks actually!

I think I am getting better at this whole thing, seriously, an attitude of acceptance has made it so much easier to get through. I really thought after my 6 months of chemo in NZ I would never ever go through any more treatment, it was so awful. Now physically this is comparable but psychologically with the support through the Drs, Nurses, Auxillary Nurses, Counsellor, IV access specialist, Alternative Therapists, Financial advice, Wig technician......and then friends, family, my boss, work colleagues.....I feel I am in a massive safety net and I can't fall through any holes!! And consequently my husband can stay my husband and not my case worker!! I need to acknowledge here that my work colleagues in NZ became my friends and my family when I was ill and did everything and anything that they could and were with me every step of the way. I will never forget the massive acts of kindness that they showed me during that time and I couldn't have got through it without them. I guess the difference is here I trust that my care is coordinated and planned and people are on top of it, something unfortunately I didn't have last time. But also there is a difference in me, I am taking this on with more guts because I want to get through to the other side - there's still so much more fun to have! It's all good!

This too shall pass

It's my son's informal ceremony today to celebrate the end of his GCSE course, as we were talking about it this morning he told me that I could come as long as I wasn't embaressing......I promised to behave.Then I realised that I was feeling some reluctance to going, but why? I have no other commitments today, am I just being lazy?? No, I have woken up today feeling a bit down which is in big  contrast to my recent joy - I don't really know where it's come from. But the upshot of it is that I feel low in confidence and don't feel up to going and meeting new people and being a normal grown up. My jeans are too tight and my hair is short and thin - I feel like crap. I can cope very well with the people I know and actually socialise a lot (am cooking for 9 tomorrow then we are all out to watch a band). So I explained to him how I was feeling and said I didn't want to go, he was cool and said he would get a train and then hang out after with his friends. A few minutes later he said actually can you come? And you do look nice when you make an effort (bless him). So I will put my face on, 'do' my remaining hair, get changed and just try and man up, for my son.
I suppose what goes up must come down and the same for my mood but I have 12 days til the big hospital stay and I intend to make the most of it so how to shake it off!!? I just want to sleep. I miss the energetic super fit (slim) me I was before biopsies, chemo, steroids etc....Just yesterday I went through the photos of this last year to choose a load to collage and take into hospital, man I have had so much fun! When I looked at photos I thought ok good times will be back and I will be lovely again! Today the thought of the photos makes me feel a bit sad and nostalgic for a diminishing self......what a difference a day makes!
This too shall pass........

Life can be so nice

It is pouring with rain! It was midsummer yesterday! Do you know what though I don't care that it looks like winter out there.....Why don't I care because I feel great, I feel normal! And each day of feeling ok is a gift to me and pretty much nothing else matters! This is doing wonders for my relationships! Particularly with my beloved, small stuff? - get over it! Even past dramas which I usually cling on to for dear life are beginning to stay where they belong, in the past! Because dammit today is MINE and no one and nothing is going to take it away from me!

Overall I feel that I am coping better emotionally with this lot of chemo in comparison to the ABVD. The Drs told me that this regime (ESHAP) was more intense and yes probably physically I feel pretty battered for 7-10 days. I feel totally exhausted, can sleep up to 18 hours a day, appetite goes very strange, I get dreadful constipation and subsequent pain and bloat. Feeling like that day after day makes me grumpy because I get bored and frustrated, but what gets me through is accepting it, and knowing it will pass and will feel not just ok again but bloody great!! I guess with the ABVD I only had a few days of feeling 100% and then I was back in again cos it was 2 week cycles, plus I was trying to work, and I was the other side of the world, there was no organised support in NZ, and I did not have any faith in the coordination of my care (another story) and there was no end in sight because the plan changed frequently, I had no plan for what I would like to do once I was better, and I was angry too I had gone through a real crisis of faith - how can this happen? I am so positive and fit and young etc....I resented the illness for as I saw it robbing me of my youth....by the end of 6 months I was literally on the floor and at that point asked my GP for anti depressants.
This time.......I am home!! YAY! So am lucky enough to be able to call on any number of people friends and family to accompany me to appointments, rub my feet, generally entertain me! I am not working at all until I am better which is huge weight off my shoulders,I had my hair chopped once it started to thin sounds obvious but last time it thinned and thinned until I shaved it, I live right by the sea which is sooooooo good for me, I started anti depressants as soon as I suspected a relapse, I have 100% faith in my amazing team at the hospital so I can relax and just be a patient, I have a clear plan of care, oh yeah I have a picc line! Picc line is frieendddd! My relationships with my beloved and my son are in a really good place, the recent yoga study and practice I have done has helped me keep perspective, I accept what is happening for what it is and aim to walk in the experience and learn form it rather than resent and reject it, and I have a growing list of stuff to do when I get better!

So, today I have a scan, then counselling, then massage :)
Next wednesday 'they' will discuss me at the MDT meeting and I see them next Thursday for plan which will probably be 6th July hospital admission BEAM chemo then stem cell transplant then recover then home ....hurrah!
Fingers crossed then for a clean shiney scan!

Harvest Day Update!

Ok so Monday 20th June was Harvest Day........well the staff on day case have been eyeing up my veins for weeks and were having some discussion regards whether my veins were sufficient or I would need groin access...haha the male matron looked at my arms and said hmmmm you may have to shave your minge! brilliant! another reason to be home! only in the UK...
Anyway the lovely haematology nurse got a cannula in my weedy vein in right cubical fossa for the return and then popped a solid larger guage metal cannula in the left to extract the blood ( I was super brave btw, well that and the fact that it didn't hurt as much as I anticipated) The blood test in the morning to see if I had sufficient stem cells in circulation needed a value of 20 to continue........mine was 131 (oh yeah) so the 10 days of injecting myself in the belly had worked! Had to sit still (chore) for a whole 306 minutes while my entire circulation went out and back in 3 times!
Got some side effects from the anticoagulant, it depletes your calcium and I felt very odd, quivery, starting from my face and moving right through body - yuk. I was given a glass of milk but that didn't help so I had  calcium infusion and then a magnesium infusion also. Have to say I didn't feel normal til it was all over but was manageable. I called the unit when I got home and the result was that I had enough stem cells for 4 transplants!! check me out!
I have a CT scan tomorrow (fingers crossed it's gone!) and then 2 weeks off! Then.........4 weeks in hospital for chemo, transplant and recover! Happy Days :)

Yay!

Yes! Finally, well 5 whole days post chemo I feel completely normal! I love feeling well it rocks!! Yesterday evening went out to my friend's for dinner, four school mates together being bloody stupid, childish, serious, grown up, happy, sad, nostalgic, optimistic, counselling, lecturing, confessing, laughing, crying .........all in 3 hours! Marvellous! i love my friends soooo much and always feel energised after time with them.
Then today we arranged to meet at 9 (I was singled out last night and in a early morning text not to dare be late!) - I was there at 9 sharp actually and shortly after when all the girls arrived we were pretty much racing out to sea in a rib to check out the River Exe Cafe, genius.
This arvo I went and saw my little sister and her baby girl we had a lovely afternoon gassing, sitting in a traffic jam to Totnes (!!!) and drinking hot chocolate, got some proper smiles from my niece (she's not only advanced but clearly loves me).
No pills today!!
Just about to do GSCF injection... no bone pain which is worrying me....
Bloods tomorrow - fingers crossed all good
Now watching apprentice :)
Might dye hair tomorrow?
Ahhh what a great day
x

What? Why?

Ok so in the last 24 hours as a virgin blogger I have discovered and considered several things:

• A lovely American couple already had the genius title of love, life and lymphoma...but I can't actually work out how to change it at the mo, sorry guys.
• After googling 'chemo chic' to investigate my business idea of central line cover wear and cool headwear etc I found the most amazing, witty and informative blog on cancer ever.The realisation that mine will never be as entertaining or simply just as good nearly halted my blog career right then and there!
• My blog doesn't come up on a google search so will have to give URL to interested people
• Which led me to consider, who is interested and why am I doing this??? (and it's not just to humiliate my 17 year old son)
• I think this process will be cathartic
• I like writing
• I am spending a ridiculous amount of time indoors, shortly to be more
• There are people all over the world that care about me and this is an easy way to update those who are interested...
• Finally and I think most importantly, at every stage of this lymphoma experience I have been seeking  other peoples experience online to see how on earth they got through it, what was their story? How did it affect them physically, mentally, emotionally? What were the treatments and side effects like on a day to day basis? I wanted to read things like day 1 ESHAP was like this......etc Not what to expect from a leaflet but how it felt. So if my day to day experiences of lymphoma, chemo, stem cell transplant etc can help eliminate the fear of the unknown for someone then that's cool.

So, there we are. It's day 4 out of chemo, I am still slightly nauseas and my guts are giving me serious gip despite a week of fresh fruit smoothies made by my beloved.......does not help that I have managed to go off water, it just tastes yuk! Other things I have gone off:

• Tea
• Coffee (even Costa's flat whites)
• lemongrass and ginger cordial (dammit)
• wine (outrage!)
• pretty much most sensible food

Despite not really fancying anything I end up fantasising about food I could possibly want and there's a theme here........rubbish simple carbs which anyone who knows me will understand are usually just not in my reality! Specifically:

• Kentucky (haven't gone there yet but am picturing some fillet, zinger, minger, dinger burger fat bastard combo? does that exist?)
• Dr Oetker pizza (have been there several times)
• Croissants! (unacceptable!)
• Ginger Nut biscuits (for the nausea you seeeee)

Ok now I have committed this to writing I am ashamed and I need to have a little word with myself.........echoes of my patronising lectures to pregnant mummies..."now your baby doesn't need donuts......." 
Laters x

FORCE & Francis Clark 10K Run @ Powderham Castle 2011 - Powered by The Active Network

https://regonline.activeeurope.com/force10krunatpowderhamcastle2011

4 years ago....

So...4 years ago just about to the day on the other side of the world I finished 6 months ABVD chemo and my ace choc lab Busta became a dad, happy days!  3 weeks of radiotherapy to make sure and back to work as a midwife at Whangarei Hospital, goodbye cancer!! 2011 - I have been back in the UK a year, Busta's gone, the pups Molly and Dudley stayed in NZ, Cancer is back - the cheek! And thus starts my blog..love, life and lymphoma......

I am now the proud owner of a PICC line which is actually a godsend just doesn’t look very sexy! Once that was in and healed I started  chemo 9^th May Mon to Friday, including a continuous bag to wear at home(def not sexy but found a cute little bag to wear over my shoulder as they had made a hideous thing out of tubi grip) different chemo regime to last time this is prelude to stem cell transplant. Going in  and out everyday was a chore but it wasn’t toooooo bad. Being in there for hours is kind of like a really boring flight to nowhere when you get all agitated and over it and cant sleep or do anything and feel a bit rubbish on top of that! They scared the pants off me b4 treatment not with my prognosis (fair to middling basically) but by telling me I may put on 7kgs in a week, 7kgs OMG! I had to be weighed everyday and I made the nurse hold my home chemo bag in case it added more grams, anyway thankfully I pulled through and only put on 2kg which is now wee’d out, thank god. At least with my sexy picc line theres no more cannulation for me – hurrah!!

Had the last weekend of my 5 month yoga course at the end of that chemo week I was all ready to embrace it but bailed and got picked up a few hours later! Basically, couldnt hold a conversation, couldnt eat, couldnt listen to theory, couldnt actually do any yoga so realized was probably better off at home! Still it was good to see all my fellow yoga peeps, it has been really good and seriously once I have kicked cancer’s butt again I am sooo going to an ashram in India for a bit, its on!

Ha check this out, I asked my consultant for a physio referral as I had seen leaflets around for benefits of exercise and STC, ha they nearly bit my hand off! Apparently I am the first person to enquire about it and they are really excited to work with me when I am an inpatient. I will have a static bike, weights and a wii fit in my isolation room, how cool is that ?? I am all in for the free personal training! Shallow? Moi? As if…

So after that weekend of feeling like actual death I woke up last Monday with  ZINGGGGG!!! I felt brilliant all week, realized that I hadn’t been malingering over the last week at all! Also realized how ill and tired I was pre treatment in the light of now feeling back to normal!! So when I went for bloods and check up that week I was massively grumpy to find out my white cells were in my boots and was advised not to socialize or even go to the shops in case I catch something and basically die! My consultant seems to think I am in denial as I told him I was clearly cured and probably don’t need any more treatment, to which he replied here’s some prophylactic anti bugs and come in Monday for a magnesium infusion, how rude!

So Monday I had the infusion, more bloods which showed nearly no white cells, excellent! Now I have to stab me self in the belly every day with stuff to stimulate white cell growth in bone marrow, good times!! Lucky I am bloody hard as nails really!

Second lot ESHAP started June 6th, same again except I was mentally prepared, taking longer this time to feel back to 'normal'. Hair falling out so have had it chopped (ended up having a lovely sunday being totally pampered...it started as a haircut and I came out manicured, pedicured, fed and feeling very special). I have also had a fab trip to London where I laughed more than in ages and met some very wonderful people.

So apart from the inevitable ups and downs, things are good, I have been looked after well by family and friends. I am in danger of overusing ‘but I’ve got cancer’ to get anything from tea and chocolate to gifts and holidays…… and to get out of housework, shopping etc  Oh well maybe if I go quiet for a bit I can pull it out later for something I really want!?? I know am such a bitch!