MINI SURGERY

November /December 2013
I haven't written anything these last few months, have got side-tracked with life.  So, where was I?  The surgeon dealing with my case had told me they wanted to remove a large area of my breast (we´re talking centimetres, but for me it was HUGE) and all the lymph glands in the armpit, all just in case.  I asked that the surgeon just remove the teeny-weeny piece of titanium they had put in my breast to mark the spot of the tumour.  The surgeon said they couldn't do that, as in they didn't have the technology to do microscopic surgery.  So we came to an agreement, much to the surgeon's chagrin.  I have to say I felt for him, my requests must have seemed outlandish to him.  I signed a hand-written consent form to a kind of mini-operation - they would remove the least possible amount of flesh!  Well, when it came to the operation, performed by a different surgeon as it happened, he couldn't resist and took 3cm by 1cm.
Operations: you don't feel a thing, you wake up feeling high on happy pills, and in the days and weeks after, although sore, it didn't hurt one bit.  Quite incredible.

TO BE CONTINUED

LESSONS LEARNED SO FAR

Well folks, I made a little list, or should I say I just started one? Because it's gonna grow and grow, or maybe you just get a deeper and deeper understanding of the fundamentalas.  Life keeps on teaching us, and we think we've got it sussed and then we learn that we ruddy well haven't got a clue.  So here goes for the mo.  I've learnt to .... more:

love
give and receive the love and support of my family, partner and friends
give and receive!
be less confrontationl
be less defensive
be less bossy
complain less
accept others the way they are
not be so easily manipulated
be sure of my decisions
connect with my soul (yep, that's right)
give up the food drug
take extra care of my body and what I put in it
have patience
be receptive
be open
be less materialistic
overcome a great many of  my fears
be less vain
be more optimistic
switch off my burning brain
be less of a victim
fight life less

I've learnt more about:
joy
sadness
optimism
anger
discipline
my family system
my hormones
the body
nutrition

LEADING UP TO SURGERY

November - December 2012.
The first week of November was pre-op week. Mamograms, ultrasounds, scans and what-not. Various needles involved, of course.  All leading up to the meeting on Friday with the surgeon who would pass sentence. I had a cold that week, now there's a surprise! It only lasted a day, mind, (sleep and rest and biomagnetism did the trick), while my partner's cold lasted two weeks.
The mamogram was a lot more bearable than any I had had previously, just freezing cold. The ultrasound doctor gave me scare when he said the tumour was ONLY one centimetre.  I protested and said what the oncologist had told me and what I had observed: they had inserted the titanium clip to mark the centre of the lump (which at that time, late September early October, they could barely pick up on the ultrasound it was so small) and since then tissue had been forming around the clip, the way our body deals with a splinter or any foreign body, (apparently this is very typical with these clips). The doctor agreed in his jolly way but also said it could be the tumour growing again.  He patted me on my naked back, exacerbating the goose bumps, and told me not to worry as he disappeared out the door. Really not the most sensitive doctor I'd met in the hospital to date. I had a mild panic for half an hour and then I realised this was a waste of time because I KNEW it wasn't the tumour growing, the way pregnant women know what's going on because it's happening inside YOUR BODY and if you listen and observe there's so much information coming your way. Interesting thing, when I had the tumour it was like a part of me, it didn't hurt in the slightest and I couldn't feel it from the inside.  I only felt it as a lump when examining my breast from the outside.  When they introduced the titanium clip I suddenly felt something foreign was inside me, it felt uncomfortable and in the days and weeks that followed there were repercussions in my back, other parts of my breast, my armpit and arm.
The MIR scan was as awful as I remembered, there's no getting away from it. Then at the end of the week the surgeon hit me with the following: out with all the lymph nodes and a huge chunk of my tiny breast. Wasn't expecting that one.  I'd been told my results were fabulous by the private oncologists, that few people made such progress in such a short space of time and here was the surgeon insinuating I was lucky it wasn't a mastectomy. He hadn't even received the results of the scan, which I had endured the day before (he finally got them right at the end of the consultation). Had he studied the other results or merely glanced at them? His decision was based on what I had been diagnosed with at the beginning of this whole malarkey and the fact that the oncologist had sent me to him meant it was operable so he didn't need to know more. For a second or two I felt as if the last 3 months and my spectacular progress meant nothing.
Well, I told the surgeon I'd think about it, which kind of flummoxed him, so I reckon he's just not used to people saying no. I got really scared and down that day and the next, and was feeling very sorry for myself, but by Sunday I had snapped out of it (thanks to my friend Montse's session too).  By Monday I felt good again and resolved that I wasn't going to have the surgery.  Been down this road before, though, said the same about chemotherapy and look what happened there.

THE END OF CHEMO

October 2012 onwards.  The original plan for treatment was 24 weeks.  Phase one: 12 weeks on TAXOL, the so-called mild chemotherapy drug, then phase two: 12 weeks of something unimaginably worse!  Well, mid-treatment during phase 1, end of September, I had been progressing so well with the tumour shrinking at a right ole rate of knots that the oncologist confirmed the treatment would be just 12 weeks after all.  That was a moment of celebration.
Week twelve came and the last chemo session. I saw the oncologist for the usual check up and everything seemed to be on track for the final dose the following day.  But wouldn't you know my body had other plans.  I had chronic diarrhea throughout the night and hardly got a wink of sleep so that when I turned up for the last chemo session I was faint and wobbly weak.  They didn't give me the chemo session but checked me into the oncology emergency room for the day and did all the tests on me (Jesus Christ more needles, my poor veins). I have to say I was impressed that they had the means to deal with emergency oncology patients.  There have been so many cutbacks in the health service in Spain in recent years that I kept expecting to come up against some sort of set back in receiving treatment.  Thankfully this hasn't been the case.
The strange thing about it was that it wasn't a bout of diarrhea just after receiving a chemo session, it was at the point when my body was about to receive one.  Hmmm. Well, I was fine actually, I had had diarrhea and I just needed to sleep, I got progressively better during the day spent in hospital and they checked me out by the evening.  The doctors were looking for external causes, like what I had eaten, or a delayed reaction to the previous chemo session, but quite frankly I think it was my body/soul saying basta, don't want anymore drug inside me thank you very much.  So I had a whole week off from chemo, which I thought would be fabulous, although I had so much inside me by now that I can't say that I noticed any difference.
Back with the oncologist a week later and I had to ask THE question: would she let me off the last chemo session, never imagining she would.  But she did!  Now that was a real celebration.  I danced on the spot, hugged the doctor (this is Spain, that's what people do) and happily skipped off home.  It was over, over, over.  I felt pure relief in every nerve, every cell of my body, waves and waves of it.
Then again, the relief was short-lived as it dawned on me that I still had surgery to go through and I still had to receive the HER2 vaccine - intravenously. Oh great!
Yogis spend their lives trying to live in the moment, to not project forward, to not live in the past, to switch off the incessant workings of the mind, just experience and just be.  Nothing like being an oncology patient to force you to do just that! Or at least to deal with one hurdle at a time.

HAIR LOSS

August through to November 2012. Obviously this is the most noticeable thing for other people.  It used to fill me with such horror when I saw women with scarves on their heads, covering up their baldness, but oh how we change.  By the end of chemo, I would see such women and myself with brand new eyes.  I now see beauty, pride, courage, strength and humanity. I see the real woman in myself and in the eyes of other oncology patients.

It was round about session 3/4 that my hair started to gradually fall out.  I had obstinately not had it cut short, in denial up to the end, and I don't know if this was such a bad thing all things told.  What it meant was I lost my hair little by little (and boy did I have a lot) and somehow this helped me get used to the idea.  It was shocking and distressful to start with, but then after a while I also took a perverse kind of pleasure in pulling out loose locks.   Like popping bubble wrap or bursting balloons. I mean, when else in your life will you be able to do such a rebellious, anarchic act with such wild abandon?  When it got so tangled up at the back, loose hair twisted round in a ball, I took out the scissors and gave it the chop.  Pure peverse pleasure again.  I was wearing a handkerchief on my head by then, and still had hair that showed, so it didn't matter how it was cut.  Well, by week 11 there were wisps left.  Perhaps more hair would have remained if I had cut it short from the start (I mean I pulled out enough hair for 3 wigs), who knows?  

People do stare at you, or rather look for a second too long. It doesn't bother me, surprisingly it didn't bother from the very start (I have far more serious things to think about) but I do confess there are certain acquaintances I haven't wanted to see me looking like this, perhaps people I put up a front with, people with whom I'm on the defensive, people whom I don't trust fully.  Oh, the ego. With strangers I couldn't give a flying hoot, and with good friends I have no qualms taking off whatever is covering my head. It was a shock for my sister when we first skyped during chemo and she absent-mindedly said on seeing me "what's that tea cozy doing on your head?" I whipped off my woolly hat and she screamed "put it on again"!  It was very funny to make her squeal.  I think it took her just the length of that one call to get used to the idea.  And I have immense admiration for the women who don't cover their head at all.

Four weeks after finishing chemo, I look like a skinhead - a nice fuzzy growth sprouting all over my scalp.  Taking longer than I thought, but then again nothing about this whole process is anything like what I imagined.  Chemo stopped 16 October, while still warm in Barcelona.  Now it's late November and I just want hair to keep warm!  Never thought I'd ever say that!

SIDE EFFECTS

August to October 2012. The oncologist in the hospital explained the side effects but reassured me I could lead a "normal" life.  Maybe some people can but I couldn't and I met a lot of oncology patients who couldn't either.  I did meet a girl who seemed to have minimal side effects from the same drug I was being treated with (Taxol) AND she carried on working as normal.  I've met others who, like me, gave up work and experienced the whole works.  Actually, before I had even decided to do chemo I gave up my classes so that all my body's energy would go towards the healing process. Most cases of breast cancer are stress/hormone related, say the doctors, and my intention was to eliminate any possible source of stress. But no two people are the same.

The first week was pretty terrible, well, every week of chemo was awful, but obviously you're so shit scared at the beginning and you don't know what to expect that I think all the side effects are intensified. Add to this the fact that I was unbelievably healthy from the diet I was on and my body and soul were dead set against chemo, a truly winning combination.  Well, here's the delightful little list of how Taxol affected me at the beginning:

• shooting pains all over my body, especially in my ovaries and breasts
• constant aching in my muscles and joints
• giddiness
• upset stomach
• tingling and numbess in my hands, feet and face
• tiredness
• dry skin

A curious thing happened, though.  My lovely private/alternative oncologists recommended I put messages on the chemo packs (see the section on treatments and Water Messages, I put the word love) and that I visualize the chemo healing me and also that I repeat mantras to accept the drug while I was having the chemo session (I repeated chemo is love).  I did this in the very next session (bless the nurses for going along with it) and the aches and pains disappeared.  They just disappeared.  Unbelievable.  I had experienced something similar once before, in a workshop, run by a doctor, when we visualised our bodies filling with water.  It's a fact that the brain and the nervous system cannot distinguish between what is real and what is not, so if we imagine something is happening to us, it is happening to us and we can produce the same real physical effects.  Our body produces the water, and that day in the workshop the period pain I was experiencing simply ceased to exist as my ovaries were soothed by the water. It was also thanks to a couple of sessions of PSYCH-K that I changed my attitude towards chemo and the messages I was sending to the cells in my body.

From subsequent sessions I experienced the above (minus the aches) and the following:

• prolonged waves of exhaustion and big downers (in terms of hormones), bouts of crying and negativity, anger and hopelessness, all of which were drug-induced 
• explosions of toxicity a day or so after the session, which I would notice from the metallic taste in my mouth, heavy aching ears, spots on my face - especially around the ears, how strange is that?
• radical changes in body temperature: boiling hot and freezing cold sweats which intensified during the course of treatment and which was the body's response to try and eliminate the toxins 
• an upset stomach from time to time, a couple of bouts of diarrhea
• perpetual tingling and numbness and a general feeling of being ill
• a feeling of being disconnected from life, a total absence of vitality and at times with little or no will to live, because when you're at your worst life on chemo doesn't seem worth living  
• in a nutshell, I felt drugged up to my eyeballs

I should have kept closer track of the symptoms, actually, because another way chemotherapy affects you is mentally - you can't remember anything (what you were going to say, what others have said, things you were meant to do, what you need to take with you when you leave the house etc), conversations or emails are hard-going because you can't find the simplest of words. One of the challenges of writing this blog, in fact,  has been that I started writing it while all my mental and linguistic faculties upped and left.  Two weeks after the final chemo session my brain came back from holiday, albeit jet-lagged, and now as I write four weeks after chemo the struggle for words isn't so severe.  It's gone back to being just the normal struggle of a Brit who has lived in Spain for over twenty years and who can't speak real English anymore.

Side effects I didn't get:

• no mouth sores!  Thank god for small mercies and thanks to an Ayurvedic treatment called oil pulling (see the alternative treatments section). 
• no thrush - thanks to something I was prescribed by my private oncologist
• no real lowering of the immune system - again thanks to what I was prescribed

Oh yes, and you loose your hair!

THE CHEMOTHERAPY SESSIONS

August 2012. So I finally started chemotherapy (third time round) dead set against it. I was quite honestly so terrified that when I wobbled into the chemotherapy ward I was shaking all over. I don't know if other people are equally scared, maybe some, and maybe others go through this experience unscathed from start to finish.  I know I tend to think too deeply about most things, and I know I am a highly sensitive person and I'm deeply affected by any dramatic event.  But here's a firm conviction I have. We are who we are, we can't be anything else, so there is no right or wrong way to react or to be.  That's just people being judgemental. We ALL do the best we can. Neither does anybody have the right to tell you how to be, especially if they haven't faced the same thing.  We all react very differently in these life-threatening situations, some people space out to cope with what's happening, some people break down, some people take it all in their stride, some people don't seem to be aware of what's going on ... there must be endless variations on the theme.  To give an example, I had the beginnings of cancer of the cervix at the age of 30 and it was in all honesty an absolute breeze.  I was so unaware of what was going on, I don't think it even registered that the cell changes could be the beginning of cancer.  I had the operation, didn't feel a thing and carried on with life oblivious to the seriousness of what I had been through.

Well, this time round, older, hopefully wiser, infinitely more aware, I went to the other end of the spectrum.  Acutely conscious of the implications, every muscle in my body was tense, every sense on overdrive, my mind (or soul?) insisting it was a bad idea.  What I wanted, what anybody wants, is to treat the tumour and leave the rest of the body alone. If only modern western medicine provided that.  No doubt it will one day.

First there was an interview with the staff nurse who explained the whole procedure. Then I had an angel of a nurse to administer the chemotherapy.  The room was really very pleasant - modern and spacious, only 4 patients to a room in reclinable chairs that were designed by the gods!  The needle didn't hurt at all the first time, which would not be the case in subsequent sessions, bless the nurse.  But given the emotional state I was in (and how few toxins I had in my body) I was acutely sensitive to the effects of the drug.   I felt it affect my ovaries instantly, which freaked me out because all along my greatest objection to chemotherapy was that it would interrupt my period and I would not be able to have children. Then to feel the drug go in and around your body (when your head is still calling it a poison) was no less than  sinister.

All in all, the session lasted a couple of hours, I felt drugged and shocked but it was over. Back at home the only thing for it was to go to bed. Believe me it is SO hard to describe the sensations, unlike anything you normally experience.  You feel drugged, spaced-out, almost giddy, all senses and bodily systems altered in strange ways. Somebody asked me if it's like having flu (bar the mucus and the aching muscles) but it's not like that.  It's indescribably weird in an unpleasant way.

Writing now from the perspective of having had 11 sessions, I can say that I just don't get it - how each session could go so differently, how the side effects could vary  tremendously from one week to the next, and how, try as I might, I can't for the life of me detect a pattern in any of it!  Sometimes a session would knock me out and I would be drugged and barely able to walk out of the hospital without assistance. Other times it would bring on sleep. And sometimes I'd be wide-awake and almost skip out of the place on finishing and drive myself home on  a scooter. It made no sense whatsoever, but it's what happened.

And then there are the side effects to talk about ...