Flipping cancer rollercoaster!!!!

Flipping.............flipping............................. FLIPPING.................. heck!!! Deep breath………….mmmmhhhmmmmm breathe in love ......breathe out peace! What a flippin’ day! I should be used to ‘bumps in the road’ and ‘blips’  etc, but today I fully require sedation!

I have been waiting for my Consultant to call re my results from Friday's PET scan, really hoping I didn’t have to wait til Thursday when I am due Cycle 7 of Brentuximab. I was trying not to think about the fact that my scan report would be just sat in the hospital computer system waiting to be read and thus determine my fate. So yes... I have tried to be patient but by this morning I was getting a bit worked up…everytime the phone rang I leapt on top of it already playing out the conversation in my head…….see I will let you in to a little secret here- I am NOT ill, like just not at all! This week I have been playing badminton for 2 hours straight, going to the gym, doing salsa, out and about on my bike and generally having more energy than most people I know……..I repeat I am NOT ill! So what in the name of arse is going on?? Well, surely the hodgkin's has gone?! Surely!? I am trying not to get my hopes up really I am but I can’t help it!

Anyway, so I called the unit this am and spoke to one of the fab nurses and asked if I could come get my pre chemo bloods done there today and also asked her to track down the Consultant whereabouts today with the hope of  getting results later when I come in. She was on to it and said she would try and see what was going on before I went in this afternoon….great.

So I rocked up for chemo bloods to be told I wouldn't actually abe having chemo tomorrow because my Consultant hadn't been able to be in today and therefore it wasn't prescribed (it is a complex process 'cos I am the first in the region to have it and the protocol had to be written especially pour moi...) also he hadn't read my scan report  so also could not make decision to continue treatment. So would I come back next week!! Now usually in the face of bad news (I have had a fair bit) I switch in to super pragmatic mode, but today  was uncharacteristically gutted and had to fight back the tears :(  I NEED the results asap!! AND if I don't get treatment this week the next one will fall on my Spain holiday! Nnnnoooo!!!

So, luckily my dear heart was awaiting my call from upstairs in the hospital and while I went off to swoon over labrador puppies with my dad, he went and tried to ensure  I got treated this week. Upshot is they will call us in the morning after chatting with Dr to see when is the soonest I can go in........phew!

Meanwhile - I have been in contact with a great website - Chemochic.org  I think I mentioned it way back last year. It's a very inspirational, polished and professional site, check it out. Anyway they may be using a piece I wrote re hairloss, yess!! I am very honoured, it's such a fab website and I am proud to be involved :) They just e mailed me today which put me on a real high so that was my UP! and hospital was my DOWN......trying to find the middle ground...

Well, large glass of Pinot Grigio and Tesco meal for two, hot bath and bed, sorted........tomorrow is another day!

Oh - and have been messing with my blog layout...whaddya think??

Peace

x

Scan post Brentuximab cycle 6

So I had my PET/CT scan on Friday..... results will be available to my Dr in 2 working days. Here are the potential results and outcomes...

• 'mass' has grown - cancer activity is whatever -plan will be no more treatment - bugger off and die
• 'mass' has shrunk - cancer activity is whatever - plan will be continue treatment and review with scan in 9 weeks
• 'mass' has shrunk - cancer activity is zero - ie complete remission- plan is continue treatment and consider stem cell transplant.......

Quick review, I was headed for stem cell transplant last year but failed to get into remission with chemo- my options were pretty much have more mega chemo, then have bone marrow transplant with good chance of death or long term disability..slight chance of cure, I read this in my own way but....that's how I saw it. But now I actually could be looking at possible complete remission with Brentuximab and then stem cell transplant.....and possible cure after living it up for the last 9 months without having to be an ill person.....this is actually amazing! However, having accepted death and having such a limited future..considering what life might look like if I do survive is actually quite scarey! That sounds awful and ungrateful but it's the truth! I know I am still yet to cross that bridge, but what will I do?? I'll have to get a job, generally sort my life out!  

Well either way this is a big week!!! FYI I promise to be the most amazing meeeee and make an amazing contribution to the world if i do live so please do, vote me!!
xx

PET/CT post 6 cycles Brentuximab....and maybe Barcelona!!

Massively brilliant! Just checking my blog stats and I have views (lets call them fans....lol) from Brazil!! Actual Brazil!! So - unsubtle hint..yes I would love to come convalesce at your house in Brazil and of course you can take me dancing! Not a problem!

Talking of dancing.....have been looking at getting the train from Alicante to Barcelona whilst we are in Spain as there is a very very cool salsa festival and I sooooooo want to get amongst it! It pretty much doubles the holiday budget...BUT...feels rude not to!  Am totally loving all my salsa classes, the teachers are absolute legends, I am sooo lucky to have access to such awesome classes :) I even converted another NZ mate last night - I made her partake very much against her will and she was pleasantly suprised and may pursue the world of salsa when she gets home (yay - another one!!)

Bank holiday weekend / jubilee/ exmouth festival was TONS of fun despite the pants weather.... Attended a proper street party which put a huge smile on my face (hope to plagarise some pics soon) great music, good catch up...and I took the excuse to wear my fab 'wedding' dress :) Then there were fireworks and bonfire beacons on the beach and just goodwill and love to all men :)

Meanwhile in cancer land- have scan on Friday- pleeeease visualise complete remission, ok I know that means that at some point, I may have to consider, perhaps getting a .......ewwwww job....but, ok I accept this scenario it's a fair cop.

Brentuximab 6 has probably been the easiest I reckon, bit of fatigue that's all , and if anything hair growth! - it's basically out of control! no more annoying anxiety, yes sir I feel pretty good!

Ok well again team I ask you to cross your fingers/toes/claws/fins etc for complete remission!!! Bring it on!!

Huge Love etc

xxxxxxxxxxx

A funny thing happened on the way to Chemo...Brentuximab cycle 6

Ok I lied, it wasn't actually funny..but here's the story anyway!

I was up on chemo day relatively early for me, preparing fruit and veg for some delicious healthy juices, oh yeah, and the phone rang. It was my son (who lives around the corner with my bro) he was fully ranting about the apparent 'loss' of his exam timetable which was obviously my fault as I had recently tidied his room. He thought that he probably had an exam this morning but wasn't sure and didn't know what time. So like the uber mother I am I calmy told him not to worry I would be round straight away. I duly abandoned the juicing activity and jumped in the car to go and help. On arrival to his room I immediately found the 'lost' timetable on his desk, and yes indeed his exam was in 30 minutes. One very stressful car journey later (Him-Oh that's it - I have failed the year etc etc your fault because and I quote "you raised this!") I delivered him to college bang on time. So he made his final exam and I tried to retrieve the inner calm and headed to the hospital. I had decided to go alone to chemo because I find it quite tiring to go with someone else, having to try and talk to someone all day, be semi entertaining..... and compensate for their impatience, I mean I am soooo used to just hanging around ..waiting, it doesn't stress me out a bit, but for those who aren't a patient or indeed patient...it's like - when will they see you? how long will the Dr be etc. For me, well you know, I have no where else to be so my attitude is it will happen when it happens...basically I prefer going solo.

Brentuximab number 6 was again plain sailing......I chatted the consultant up to do a PET not just CT after this round...(CT shows mass PET shows actual cancer activity) He was concerned re doing a PET straight away cos of high radiation exposure.....hmmmmm, so I asked if he meant long or short term effects, he said long term, I then clarified so as in years? Yes he replied. I reminded him I don't have years though, soooooo...........He then replied..............are y'all ready for this?? "Well you might have years, if the brentuximab gets you into remission and we give you a transplant......." Whoah there! WTF! Me? Actual years? This is big shit man! Of course the potential years deal involves a) complete remission and b) deciding on and surviving a transplant, but anyway it's all a hell of a lot more hopeful than it was last July!!! So you can pretty much stop feeling sorry for me as I appear to be destined to be immortal actually!

Brentuximab side effects FYI:

Fatigue (although someone did say to me that they were grateful for my fatigue as God help them if I actually had 100% energy) but anyhooo I feel fatigued!

Anxiety - re perceived, imminent, possible death eeewwwwwwww!! (this is a new thing)

Fudge brain syndrome, AKA chemobrain......that's what I am blaming it on anyway. Sudden inability to express myself coherently or tendency to have the first part of a conversation in my head then not understand why no one knows what I am on about.

But:

Blood counts normal

Hair intact

No nausea

Yes it really seems a miracle drug:)

I have felt great this round. Bigging myself up here, I did go into it very positively and I have been juicing a lot and bringing back the chanting.....who knows?

This week I went with my dad to choose the most cute lab puppy ever! I am sooo excited for a little play mate for TIlly......although she did get freaked right out tonite by a black lab pup who wanted to be her mate at the exmouth festival!! I think Dad's pup's name is Emma, i will make it so. Gutted though that only a few days afer he gets pup we are jetting off to Spain! Yess!! Massive hug to my liitle bruv who made sure  that this holiday happened, he is a star!

Om Shanti x

Not Dying of cancer.....Living with cancer

I am not dying of cancer, no, I am living with cancer.

You see what I did there? That's soooooo deep, yeah. See how empowering that statement is? How it makes me not a victim.....but rather as someone who is experiencing a situation.....no negativity attached to it..mmmmm........and just simple - Living not Dying. Go me for feeling like I have invented a great cancer mantra it's probably all over the web already and I didn't actually  make it up (haven't googled it yet) I read one years ago "I have cancer but it doesn't have me" well I am putting it out there....... I think mine is better!

The sun shone all day long today and it was properly lush! I have caught up with friends and family, had some epic games of badminton (sweaty), done a salsa class (awesome), got wonderfully fed with veggie curry by my little brother..(yum) and booked plane tickets for Spain- yeah baby!!!! Top day!!!

Suffice to say my slightly rubbish mood has lifted and life is good again, in fact haha here's another inspirational thing I made up today...ok so you may or may not be aware that the 'youth' today have a commonly used acronym 'FML' meaning F@*K My Life - cos you know it's so bad being a teenager having your whole life ahead of you, fresh skin, good health, no responsibilities etc (bummer) well anyway my acronym is 'LML' yessss!! In yo face smelly teenagers!! Love My Life! Blimey if it wasn't for this pesky cancer my life would be pretty much perfect. I just wish it hadn't taken dying to start really living!! But I am just so grateful for what I have and knowing that I am privildged enough to have the opportunity every day to experience love, friendship, the ocean, the elements, good food, fine wine, laughter, energy, movement, riding my bike, loving my dog, seeing my boy growing up, reading, chanting, watching shit on I-player, planning the weekends, painting my nails,texting, snoozing, dancing, OMG my gratitude list is as long as my arm.......I should shut up and go to bed!!! OMG ...BTW FYI LML.....LOL :)

Celebrate good times

wow- today I saw my baby boy turn 18! how flippin' cool is that!!?? Need I remind you that last July I was given 6 months and had to consider whether a letter or voice recording of birthday wishes was least sad and painful?? and yet - yeeeeeeeee ha!! I got to blow up the balloons, decorate the flat with cheesey 18th birthday banners. cook up a mexican feast, have my son dis the bingo theme to the evening...... and get a bunch of people together to get my boy his mac book :) am a happy mama!!
Life is good!
And.......following on from this awesome day- yes life can just be FUN central - on saturday there will be 10 of us segwaying our asses off (there will definitely be footage of same) then to the fabulous 'Nobody Inn' for lunch......mmmmm cheese........... :) and thennnnnnnn next week is Exmouth festival - say no more, dancing and frolics in the park!!! altho this is clashing with a massive salsa do in Bristol, may have to let weather decide...
Apart from birthday celebrations , the weekend has been fun........Friday night me and my mate hit town for proper cocktails...I always thought they were a bit of a waste of time. how wrong could I be! Actually delicious! Loving the fact we can just hop on a train and be amongst it then back home to wierd yet comfy local pub.....
Re: my cancer life -I am flipping between feeling soooo alive that I reject any opinion to the contrary....to feeling super anxious re: next scan, subsequent treatment etc. My mood has been, well, rubbish really for a few weeks which totally sucks cos I know worrying is pointless and if anything , harmful........I suppose it's 'normal' but that doesn't help, particularly as i don't really subscribe to 'normal'...
Ok - well 4 more days til Brentuximab number 6 - pleeeeeeeeease everyones' finger and toes crossed for scan results being ace after that!! Will call me doc in the a.m and remind him a PET scan would be preferable hem hem.
Love and Light
Sim
x

Coping with hair loss...

I have recently been reading some bumf about chemo and hair loss and 'coping' with it.....LOL 'coping' what does that mean?? losing your hair sucks ass, fact! but what doesn't kill you makes you stronger a ...and in some ways it has been an amazing experience, though NOT one I would wish on anyone!!!

I first had chemotherapy when I was 33, I had shoulder length blonde hair and I had it cut into a short bob when I knew I would soon lose it. My hair began to fall out slowly after the first treatment and by 3 months I shaved my head because my hair was so thin. Initially I bought 4 wigs on the internet and decided that this was the excuse I needed to have the hair I had always wanted, I had a really long one made of actual human hair –eeeww that was very similar in colour to my own, a blonde curly one and  a brunette and blonde one on a pre-fitted head band…..well it all seemed like a good idea at the time!  I wore wigs out and about and to work but not at home. I never found the wigs comfortable for more than a couple of hours and soon opted for custom made head scarves. I definitely compensated for my lack of hair with other feminizing accessories, I wore big ear rings and necklaces and learnt to apply make-up thanks to the ‘look good feel better’ charity.

What I found compounded my ‘sick’ appearance the most was losing my eyebrows and eyelashes, I never realised before just how much they frame your face and how odd you look without them. Unfortunately with steroids I also piled on a load of weight so after a few months I just did not recognise the person in the mirror, it was not a nice time.

However there was a plus side to this experience. I had always been rather inconspicuous, deliberately, in the way I look. -I never had the confidence to put myself ‘out there’ as it were. Suddenly, with this cancer badge I had no choice, I had to develop a look that blended with the headscarves and subsequently very short hair. I was now conspicuous and had to embrace a different portrayal of me, and this meant actually appearing confident and a little eccentric…when my hair grew back enough to get away with looking like I may have actually chosen to be that short I soon realized that I looked like the sort of person who had the confidence to have really really short hair!! And actually I totally was not that confident person but this strange twist of fate ensured that I was perceived and therefore acted in a different way! I would never ever have had short hair out of choice but luckily the pixie look actually suited me, and I was very grateful for having a symmetrical head and non sticky out ears!!

This confidence stayed with me and eventually I lost the chemo weight and kept my hair short. Generally I was a different person, I had to be and at the end of the day- who really gives a shit about what I look like apart from me?  Having looked and felt like death warmed up it was all a bonus!

After a couple of years I decided to grow my hair again – it was fun, I eventually had enough to put in pig tails and then wear up in a clip. Then I relapsed with the cancer and went through the whole damn thing again, minus the wigs !!! this time around I was out and about pretty much straight away with a shaved head, it still sucked but I knew it would pass. fortunately I didn't lose my eyebrows or lashes this time.  Fast forward through skinhead, short crop, unfortunate ginger dyeing experience, the to dark brown.... now I have a mop of bleach blond curls which I clip back in different ways with fun and funky clips, I love my hair more than ever and intend to keep it this way. Partly 'cos I may well not live long enough to grow it long again but mostly ‘cos I love it, its easy, its  cool and its me. I am fat again which is crappy……but I am alive and keen to see 40!! I still lament my cancer free days and the fact that I have had to deal with so much shite. But, big but – I am more confident, out going, and certain of myself than anyone I know. I live in the moment and say yes to life and I know that my situation and attitude inspires others and that is a gift. I revel in the irresponsibility of being me but also just thrive on the fact of  how amazing our human embodiment is and how much potential for happiness , love and fun we all possess….

Peace out xxx