Category: Chemo Banter
The Kitchen Workout and Peripheral Neuropathy
Taxol, the last chemotherapeutic drug I was taking, apart from doing its supposed job of preventing a return of cancer, can cause damage to healthy neurological cells by affecting the peripheral nervous system. It starts by causing a mild tingling in the fingertips and toes. As the weeks go by and more gets pumped in to your system, this tingling extends to the entire hand and foot, pains dart up and down the long bones of the arms and legs and the muscles there and around the neck and back really start to hurt.
By the end of the eight weeks, apart from having numb extremities, my hand, arm and leg muscles were so weakened that I could hardly get out of my bed for a whole week.
Then I began expecting an improvement. Ok, my mind would plan, tomorrow I’ll be stronger than today, so I’ll get up, do this and that, take a rest in the afternoon and I’ll be fine…I’ll be fine.
So, now I’m beginning to realise that my mind is not in charge here. Recovery from peripheral nerve damage is not an overnight process. It could take months and in some unfortunate cases, years. I can have a good moment and have a burst of energy but any rigorous activity will beckon a sofa, bench or bed to rest up the weary muscles.
I’ve never had to live measuring out my strength before and it’s a new reality for me. I find it quite challenging, exacerbated perhaps by not knowing when I’ll notice an improvement. This is a real test of patience and determination.
I say determination because I want to get better and feel normal energy levels again, to be able to practise sport to keep fit, to be active with my children and husband. My oncologist gave me no satisfactory guidelines as to what I can do to help myself in the recovery. Perhaps there really is nothing I can do but rest it out and wait. But the prospect of the next month or two or six of just resting up is not appealing to me. I’ve had my glut of internet and politics and virtual wars of love and hate. I’m willing to at least try and help the recovery process.
So once again I’ve taken to the internet, researching ways to live with and improve peripheral neuropathy. I have learned that many people with diabetes suffer from this condition, so they are another group I can empathize with on a physical level (as well as old, chronically ill and physically disabled people).
There are dietary supplements that are recommended but of course there has been no scientific study as to their efficacy, which is why, I assume, my oncologist can’t advocate them. But I know they won’t harm me so I’m taking a good vitamin B complex, known to be good at strengthening the nervous system, co-enzyme Q-10, which is good for joints and alpha lipoic acid.
Instead of showers, I have a daily bath, which really helps with easing muscle weariness. Every few days, I add 2 kilograms of organic sea salt or a cup and a half of Epsom salts to the bath water, which apparently helps with detoxification of the body. I always feel fantastically relaxed after the bath and I think it is a practice I’ll extend in to my healthy “normal” life well in to my future.
I was just skimming over an academic article last night about the actual biochemical process of chemotherapy-induced muscle damage. I didn’t have the patience to wade through the entire 75-page piece but I could glean from it, albeit in an indirect way, the importance of providing the body with lots of antioxidants. So, lots (and lots more from now on) of fresh fruit and vegetables for the next while.
My oncologist said I could maybe do some hand strengthening exercises, although she wasn’t convincing me as to their efficacy. After a full night’s sleep, my arms and legs literally feel like jelly. It takes all my will-power to get up out of the bed. But I have been reasoning that if I stay in bed, the jelly-like feeling will persist. Whereas if I get up, force my hands, legs and arms in to action, although they’ll tire, I can rest up afterwards.
So, the kitchen, of all places, has become a great work-out site, at least for my hands and arms. The usual tasks of chopping vegetables, washing dishes, hanging out clothes, typing and holding a pen and writing have become monumentous tasks of hard effort. And making scones! Let me tell you, between the crumbling and kneading, I never realized how good baking is as an upper arm exercise. For my legs, I get out and walk for now. Getting up and down steps is more challenging than normal so my stairwell is going to get a run up and down for the next while.
Finally at night, when my muscles are well and truly beat out and they actually hurt from exhaustion, I have discovered that deep, belly-lifting and chest-flattening respiration (Maria’s instruction) literally melts away the pain in less than a minute. Breathing is life-giving, restorative and relaxing. How simple can that be!
On Finishing Chemotherapy
The morning of All Hallow’s Evening was such an appropriate date to receive my last round of chemotherapy. A necessary evil in so many people’s cancer treatment schedule, it really is horrific and I was elated, to say the least, to bury it with the spirits from the underworld on Monday 31st.
I had envisioned finishing up with a jubilant glass or ten of bubbly. But the sparkling Cava (being married to a Spaniard, champagne doesn’t very often make its way into our house) is still sitting unopened in the fridge. The truth of the matter is that I neither had the strength nor the energy to be drinking sparkling alcohol.
After my initial high, spurred on by the cocktail of steroids you get with your chemo infusion, which usually lasts a day and a half after administration, I was hit by the usual slump both in energy and in mood. And then by Wednesday afternoon, the familiar flu-like pains set in as the anti-neoplastic drug, taxol, coursed through my veins.
However, as its effects on the body are accumulative, by my eighth infusion last Monday, I was literally on my last legs. Being stripped of all bodily strength, and especially in my hands, feet and limbs, the bed has been my fairly constant companion for the last week.
Thankfully the pains have subsided and my strength is slowly returning but if I overdo it on any particular activity, I’m liable to experience an energy slump at any given moment.
The most significant side effect of this Taxol, for me at least, has been on my peripheral nervous system, causing these dart-like pains at the joints, numbness of the hands and feet, which has all mounted to muscle weakness. My oncologist has informed me that it could take months to fully recover normal sensation and strength!
I hadn’t expected her to say that. I was hoping to be as right as rain in a week but chemotherapy has far-reaching consequences, I’m discovering little by little and will continue to realise over the next few months.
My body has been touched in so many unexpected ways and it is set to continue with the hormone treatment, which I’m going to start today for the next five years. That will provoke my menopause and so I will have to be vigilant of my bones.
I’m very much focused on the secondary effects of the chemotherapy, I realise. I find it difficult to experience so many changes in my body in such a short period of time. I have always believed that here on Earth, in this life, your body is your temple and so you must look after it well, by not abusing it with drugs, alcohol and by nourishing it properly. Regardless of my attitude though towards my body, I did get sick and the expected “cure”, chemotherapy, has weakened it considerably.
But it has hopefully warded off the stray cancer cells around my body so I must now focus more on that.
I’m finding I have to slowly bid adieu to old attitudes about health and fitness. I no longer care about the calories I consume, but question if the plate of food in front of me is providing nutrients for my body. A sick body can’t heal without energy, proteins, vitamins, minerals, a clean digestive tract and liver and a balanced immune system. And lots and lots of rest.
Regular exercise and a healthy body weight have been deemed by my oncologist the only demonstratable factors, beyond medication and also within my control, that can help to keep breast cancer away from an affected patient. I’m not sporty so the very thought of an activity called “regular exercise” really does make me yawn and turn over in the bed. But if it’s part of the prescription for a healthier future, I want to build it in to my life in an enjoyable way. So I’m thinking bike rides in the sun, dancing, speed walking, jazzed up by the company of friends. Let’s see how that goes! My husband has suggested running…and I growl.
So it’s onwards and upwards from now on. I still have fifteen sessions of radiotherapy to do before Christmas and then I’ll mount that plane to Ireland for the holidays, “a changed woman”. I’m thinking I’ll save the “bubbly wine” moment for then, bury 2016 and bring on The New Year!
The vital questions my mother asks before each visit to Madrid are,
“What’s the weather like?” and “what clothes will I pack?”
Now after four and a half years of Madrid living, I’ve come to understand one preferred statement of the locals,
“This (weather) is not normal in Madrid!”
(Esto no es normal en Madrid!)
So, if I’m to believe them, balmy afternoons and evenings stretching in to November is not normal and yet that’s exactly what we had the year Ana Maeve was christened in 2014 and saw me rush out on the very morning of that event to exchange her wool dress and coat for a satin summer dress and pump shoes! Curiously I’ve experienced this, what we would call an Indian Summer back in Ireland, the first year we came here too in 2012 so if it’s not normal at two out of the four years of being here, I’m at odds to know what is.
This year when I got the call from my mother at the end of September, it was still hitting 25 degrees on the street thermometers. But I knew it was liable to change. So my usual advice, except in the summer, is to bring layers and lots of them, long and short-sleeved tops, light cardigans and jackets and a light accessorizing scarf.
She packed as I suggested and her wardrobe worked for a while and then the temperatures took a sudden nose-dive into the single figures and we were looking out at grey skies and rain. We even had to turn on the heating. I sounded like the locals with my saying, “this is not normal for Madrid!”. I could be in Ireland (and at least living in a house with a garden, which is on the top of my wish-list).
So a cold apartment brings on the necessity for one lovely weekend activity: rotation of the wardrobes. It’s a tricky business and practically impossible to get the timing right. With four distinct seasons, it seems to be an endless year-long quarterly cycle but I’ve learned that in transition times, to just put up with having choc-a-bloc cupboards and wardrobes, providing a choice of suitable clothes and footwear for the temperamental weather changes that occur in Indian summer/early Autumn and again in tapering Winter/beginning of Spring.
There was one change this year I wasn’t ready for though and that was a cold head. My brother warned me about it but until you experience it, you just don’t know what he’s talking about. But he’s right. Hair really does insulate your head and now that I’ve none (still), I’m really feeling the cold. Brrrr!
So, a throw-back to nighties and sleeping cap days, I took a trip to Decathlon and bought those very versatile “bragas”, which are literally just rectangular pieces of fine material sewn with a seam to make a cylinder to pop over you head and play around with to make some form of a warm, but not sweltering head covering for night. It literally translates as “knickers”.
So here I am blogging with my head knickers on, feeling cosy and rosy and slowly getting ready for the winter ahead. If there’s one thing I’ll really appreciate next year, it will be my hair again. Long, thick warm locks, which I look forward to brushing and grooming to my heart’s content. Night, night!
The Marathon I Never Ran
I am now five and a half months into living with breast cancer. I’ve finished the first cycle of chemotherapy, which simply means that I’ve received four infusions of two of the prescribed anti-neoplastic drugs every three weeks. They are given between such long intervals to give the body a chance to recover. It has been exhausting at times; my body has become slightly anemic and my immune system took a hit from the last session back in the middle of August. But all in all I found it quiet manageable.
I allayed intermittent nausea much the same way as any pregnant woman, unlucky enough to experience this unpleasant feeling, by eating smaller quantities of insipid foods (like steamed hake and potatoes and stewed fruit for example) more regularly, lying down when the feeling of vertigo became all too strong, drinking lots of liquids and avoiding the culpable foods, which I learned triggered the nauseous sensations (gazpacho, spicy foods and ice-cream for example).
I celebrated this first milestone with a lovely meal and a glass of red wine (containing resveratrol, which according to the anti-cancer flag-bearers have antioxidant benefits on the body but Wikipedia care to refute https://en.m.wikipedia.org/wiki/Resveratrol. I no longer dwell on the details and enjoy an odd glass of wine, when my weakened stomach allows it, in the happy knowledge that the relaxing feeling it brings me can only benefit my health).
And so Carlos and I prepared the children for their return to school – the familiar-to-parent rush around for suitable footwear, and the memory of an afternoon spent in El Corte Inglés with my two sisters-in-law and Pepe come rushing back. One adult per child, keeping the girls from mauling the sparkly runners and reminding the absent-minded Pablo how to put on a shoe. In my exhaustion, I couldn’t have done it without them. Uniforms, returning wrong sizes (did they really grow that much over the Summer? What were they eating?), books and endless reams of adhesive plastic. (Why in God’s name do copybooks need to be covered nowadays?) The memories of my mother painstakingly preserving our books with cardboard and wallpaper and the happy unawareness then as a child of how time-consuming an activity it really is. I send out another wave of gratitude to the universe for tablets, apps and RTE radio to keep me company.
And in the midst of the hustle and bustle, the second cycle of my chemotherapy treatment began. It was delayed by a week due to my weakened immune system so more rest and more pure food was ordered, which was thankfully served up by Mum. This second cycle sees a change in drug – Taxol, which is a substance taken in the hope of preventing a return of breast cancer and comes from one species of the yew tree, a fact that Pablo is very proud of since it was a variety of this very tree that Esther and José planted in their garden in Tiroco to commemorate his birth over eight years ago – and it is administered through my vein port every Tuesday.
The weekly dose suggests an easier recovery but so far I find the secondary effects more difficult to manage. After the usual nausea abates, I’m thrown to the bed for almost three days with flu-like symptoms and tiredness and then I have a day of feeling normal – today – before starting the cycle again tomorrow. Provided it’s not delayed by a further weakening of the immune system, this is set to continue until the first week of November.
And then I’ll be finished chemotherapy!!!!! The end is in sight and I keep visualizing it in many forms – and now would be the time to insert a lot of conflicting emoticons 😉
The journey with cancer is tough. Each little part of it – diagnosis, tests, surgery, treatment, normal daily life that demands that it must continue, adds its own dimension and brings to the foreground its own challenges. But what I am finding hardest is the sheer length of this trip and the physical and emotional stamina that is required to get through.
Cancer and recovering from it is a marathon. I’m not a runner but I’ve watched my husband train for this challenging event. Chemotherapy is like the months and months of training for the final run, but with fewer and fewer highs. I have to consciously create little buzz moments, like creating tasty nutritionally-dense meals, basking in the warmth of the sunshine raining down on my face when I step out for a refreshing stroll through the park or writing and publishing an honest and meaningful blog post!
But my patience for this state of inaction and what seems like an interminable recovery mode is more frequently tested as the now weekly chemo sessions keep reminding me of the illness as they relentlessly slap me in the face over and over, like the wave that battles to drag you back under, back into the clutches of its powerful force.
The Summer holidays are over, not only are the children back at school, Carlos has returned to work and my colleagues in school are familiarly complaining about the September glut of work. How I long for a glut of anything other than breast cancer! As my cousin said, this cancer recovery is like being stuck in Holland, while everybody else has travelled on to Italy.
I am in some sort of limbo. It is a strange and lonely place to be. Right now, I neither want God’s nor man’s words. All I want is to shut the door and run with my own spirit, coursing through my entire being. I think I’ve “hit the wall”.
Thank God, I can catch some glimpse of the end in the distance. As I write, I’m being reminded to relax, breathe deeply and restore my patience. This is only a drop in the ocean of time in its entirety and as my father keeps saying,
“This too will pass”.
I’ll finish with the song and spirit of our summer, “The Call”, sung by Regina Spektor at the end of Narnia Prince Caspian.
Part II – The No Hair Saga
I ought to have written this post at the start of July but I was so busy dealing with the side effects of chemotherapy and above all else pulling out tufts of hair, that I left it slip by the wayside. And now living with no hair has become so unimportant to me that I haven’t felt the need to write about it at all.
I’m like my sister’s third brother! I look in the mirror first thing in the morning and I remind myself of a Buddhist monk. All that’s missing are some long loose purple garments and I’d pass for same. The bloated effect on my face and upper body, caused by the steroids that I take with each chemotherapeutic dose, complete the male almost “hooligan” look. Hmmm, I am a pretty sight!
I was told it would take between 14 and 21 days for my hair to start falling out after the first chemotherapy session. And like a resistant dog, it held firm until day 20 just before my next round of chemotherapy. How much fun it was to deal with falling hair, nausea and acute fatigue all in the same week.
Washing my hair, it literally accumulated in my hands in tufts, clinging to every part of my body and bath as it fell down into the drain. As one woman in the hospital told me, when this happens, it’s time to shave the head. Unlike her, I didn’t find losing my hair emotional at all. As I’ve said before I don’t have such a sentimental attachment to my hair and it will grow back.
So out came my brother David’s shaver, newspaper on floor, me sitting intrigued to see the final look and off he mowed through my head. At that early stage, I still had more hair than completely bald patches so that lovely shiny head seen on those brave cancer-treated women, who decide to go “naked” (scarf- and wig-free) seemed to be a long way off.
Well I’m still waiting for that look. Most of the hair on my head hasn’t even begun falling out at all. I run a shaver through it once a week. To top off that inconvenience, all the unwanted hair that I thought I wouldn’t have to deal with this summer (and you know what I’m talking about girls) never bothered falling out either. Once again, the supergene of unwanted hair, created when Noel and Mary got together, has resisted the harshest of hair-attacking medicines, chemotherapy.
As my dear French friend Claire suggested, I could just let it grow and go patchy. It’s an idea but one that I think I’m too vain for. Or else just not brave enough. You see, as it is I wear a head scarf or a hat or else a combination of both. But I just can’t stand the stares from people, especially older people. They look, then they look again and then they keep staring. I feel like saying, “yes, that’s no hair under the scarf”. Maybe people wouldn’t stare so much if I went out bald. I’m going to experiment tomorrow.
I imagine people are sympathising internally with me, thinking of loved ones or even themselves who have been through the same as me or else thinking, “there but for the grace of God go I,” or something to that effect in Spanish.
I call it both the “cancer effect” and the “scarf effect”. The cancer badge of having no hair evokes people to give up their seats, like being pregnant, disabled or elderly. It pushes you straight to the top of the queue when you go to the medical center with your child and not one person complains (and Spanish people really take their queuing in strict order seriously). And despite not seeing my hair, evidence of my treatment plan even saw Ryanair return over €500 for my summer flights booked to Ireland!!! But I’m not recommending it all the same.
Cancer is really a big deal in our society and it’s taken seriously by everyone. I think, and it is also my hope, that the medical profession and researchers in this field want to make treatments less harsh on the body in the future. According to some professionals the need for chemotherapy to treat some cancer types will be a thing of the past in five years time. What a breakthrough that would be. And for those individuals not fortunate enough to have caught the disease in time, who are living with stage 4 metastatic cancer, the greater hope is to make the disease chronic with management of symptoms through diet and medication.
So it looks like I got my cancer too early in life to avoid chemotherapy and the hair loss. It will grow back as soon as I’m fully finished in November. Some women have reported that it could grow back a different colour and even a different texture. I’m praying to my lucky stars for the curly auburn locks look. That would make a welcome change. I’ll keep my fingers crossed.
Time and the Patience to Spend It!
Nicht der Fluß fließt,
sondern das Wasser,
nicht die Zeit vergeht,
(it’s not the River that flows, but the Water, it’s not Time that goes by, but us.)
During my fortnightly stays in Oviedo, in between chemotherapy sessions, I am sleeping in a room that is furnished floor to ceiling on every wall with books. There are books about physics and biology, history and art, religion and philosophy, mythology and civilizations, biographies and novels, classical and neo-classical, Spain and Asturias, the natural world and cooking, dictionaries and maps, to classify in some way.
But above all else, the subject which most occupies these shelves is mathematics. There are books here on the inside and outside, upside-down side and right side up side of all areas of mathematics. I, as a middle school teacher of maths in Madrid by chance, would neither have the imagination nor the inclination to open even one of those books as I fear I’d get lost in trying to understand just the introduction.
Collectively they make up the great depth of knowledge that my brother-in-law José has of the very broad subject of mathematics. They demonstrate, at least to me, a great passion that José has for the subject he imparts year-in, year-out at the University of Oviedo. It forms perhaps a complex and intricate scaffolding of understanding of the world, the kind of perspective I don’t think I’ll ever have in this lifetime.
I wonder about the simple beauty of numbers and the complexity with which they can be manipulated into patterns and series and curves and lines, (and I’ll stop right here with my descriptions of mathematics, lest I destroy it with flowery falsities) and ponder if their discovery, collectively called mathematics, could be a demonstration of the existence of a God, who is marvelous.
As a maths teacher, I am well aware that it is not a subject for everyone. Many students are not touched by the energy of mathematics. But lying here now surrounded by hundreds of titles and not just mathematical ones, I am aware of a spirit of great minds, of advancing minds, which over time must cause shifts in perspective a kind of societal evolution.
I call this spirit The Holy Spirit. (The admission of this here in a public place has caused me some anguish over the last few days and it has taken a few discussions and arguments and a lot of reading to come to terms with it). I thought by naming, what I believe is the spirit or breath or energy of God, the Christian way, I was isolating myself from over half the world but when I scratched the surface of some of the major world religions, I realized in fact I’m not.
The recognition of some other force that transcends the mere human energy is a phenomenon, named distinctly in all religions. For example, Buddhism calls it mindfulness, (https://mettarefuge.wordpress.com/2010/05/21/thich-nhat-hanh-on-buddhism-mindfulness-and-the-holy-spirit/), Hinduism calls it Shakti, though inherently different from the historical meaning of the Christian Holy Spirit apparently (http://www.beliefnet.com/faiths/hinduism/articles/holy-spirit-is-not-the-same-as-shakti-or-kundalini.aspx) and Islam calls it in Arabic Ruh al Qudus, which translates into English as… the Holy Spirit, as quoted, not from The Bible but from The Quran,
“(The day) when God saith: ‘O Jesus the son of Mary! Recount My favour to thee and to thy mother. Behold! I strengthened thee with the Holy Spirit, so that thou didst speak to the people in childhood and in maturity.”
I was washed up onto a predominantly Catholic (at least at the time of my birth) Irish shore. My parents, perhaps due to a strong conviction or perhaps because it was still the accepted norm, initiated my journey with Catholicism by accepting on my behalf the first blessed sacrament of Baptism shortly after I was born. Educated in a school under the auspice of The Mercy Order of nuns (and which then still actually had nuns teaching), I continued to receive the sacraments of Communion and Confirmation, in theory strengthening my faith and union with God, but in practice I was part of a rote system where no other choice was available.
I quickly undid my ties with the Church when I realized I had a mind of my own and decided that it was scientifically impossible for a virgin birth to occur and that it was all a pile of fictitious codswallop. It was like a sacrament of Coming of Age. And I got a thrilling pleasure then out of first skipping mass and later deciding outright not to attend any more.
I remember well the day Jesus Christ was presented to me again. By then a university student, I was sitting in a café in Galway with my good friend Elaine. We were chatting, about what I don’t recall, but suddenly she said that there was always Jesus. That literally stopped me in my tracks,
Tell me more and she told me more. I bought a Bible and I devoured it, underlined it. It all made sense to me then and I felt at peace. It was, at the time, my opium.
I gave it up again the instant I began to feel uncomfortable with public worship. Something didn’t quite sit right with me. So I left my relationship with Jesus lapse again and I placed the The Holy Bible on an upper shelf.
But like a loyal friend, He has always shown his face and pulled on my heart and soul strings both in good and in bad times, most often when accompanied by that profound sense of emptiness and the missing entity which pervades over my mood. It is then when I realise I am craving for something more, a spiritual depth of understanding and being.
For me, an important definition of who you are and what you stand for comes when you have a child and the life of important decisions opens up before you. The first, and perhaps now the most important one for me I realise, is the decision to baptize or not to baptize.
I did not want to baptize or christen my first child, Pablo. My instincts told me that baptizing my son into a major world religion was conditioning him for the rest of his life according to the norms of the Catholic shores (Spain and Ireland) he was washed up onto. Who was I to hand down to him a less and less (at least in Europe) accepted way of thinking and living. My instincts said, “Let him decide for himself when he’s older”. So Carlos and I did nothing except play and bath and feed and enjoy our first born for a year and a half.
And then we succumbed to whatever perceived pressures we felt at the time and opened up the gates of the Catholic Church to Pablo. He walked up in his white and baby blue linen suit to the Baptismal font in Malahide and had the whole church in stitches at his eyes and reactions of wonder and curiosity at the pageantry of the whole event. Of course we followed suit with the two girls. The decision to christen or not to christen had already been made.
I would say so far in our children’s religious education we have taken a lazy approach. We go to church on Sundays sometimes, we say a prayer before going to sleep, Pablo reluctantly receives a Catechism lesson on Tuesdays in preparation for his “Communion with the saints” and we read stories from the Bible when I remember to or it takes my fancy.
But there’s nothing constant about my children’s spiritual guidance. I put it down to not making it a priority when it comes to time management, not being a well educated Christian myself and therefore not being entirely convinced by the religious path itself. There are always niggling doubts about other world religions, a good God who allows so much suffering, the perception of judging others by your own standards, the past and present crimes of Catholics, Muslims, Jews and all in the name of religion.
And yet here I am again, lying down with the fatigue and nausea of the third chemotherapeutic session, no longer surrounded by all the books in my brother-in-law’s house but back in the now unfamiliar quietness of my own home (some important and instructive time has lapsed since I first started writing this post). My heart swells with a certain presence, a certain glow and I, perhaps because of my Christian birth shores, or perhaps by constantly popping up unexpectedly throughout my life in a friend’s voice, in an aunt’s book, in a sister-in-law’s words and a brother-in-law’s book recommendations, detect a persistent and loyal friend named Jesus Christ and it is He that fills that pervasive void in my life.
Once again, He has shown His face in my illness. By reading my daily devotions, referring to the Bible, discovering how other people in history have lived their spiritual experiences with God and comparing my findings with other world religions, I have come closer to the face of Jesus Christ.
I do not compare the suffering I have endured because of this breast cancer (and I quote from My Morning Prayer, ” In this world I know this pain Is nothing, But it’s mine), to that of Jesus Christ, who was pursued, arrested, tortured on the streets of Jerusalem and crucified to death. But somehow it has made we want to get to know this person more and listen to what He has said. And in that spiritual journey I read The Word and it resounds in truth.
Praying – that constant conversation with the presence of God in my heart- listening to my thoughts, which I know are sometimes just mine and very much “this worldly”, but on other occasions and especially during my illness are coming from beyond me, letting my impressions form, reading, discussing and writing are all helping me to deepen my faith, understand and carve out my spiritual walk through life.
Putting my findings into action is the challenging part and I make it my goal for the rest of my life.
My human experience has been greatly enhanced so far by a persistently continuous awakening and re-awakening to the life beyond the “porcelain”. I have found Jesus Christ, thanks to that seed that was planted by Noel and Mary forty years ago, and I have no doubt that practitioners of other religions and even atheist and agnostic people of this world, have found their own means to spiritual awakening.
In these times of massive upheaval and wars in the name of God, when there seems to be a definite trend towards the meeting of Eastern and Western philosophies, religions, medicines, cultures, civilizations, I do believe that I personally must face the challenge of understanding the Other – all that is different to me – so that one day, as society evolves, a common understanding of good and evil, spirit, God and the Son, the prophets and the saints, may be reached. That we may live in Love and Forgiveness, as laid out in The Word.
And now playing patience with myself for the umpteenth time to allay the cancer tedium, I see my grandmother Ellen’s arthritic hands laying out the cards. She was born on the eve of the First World War, gave birth to seven children during the Second World War, became a young widow and lived until she was ninety nine. She never heard of the Internet and didn’t have access to the global and collective knowledge we have at out fingertips now. All that she had (and by that ‘all’ I mean everything not only) was her own heart, her own spirit, the shores onto which she was born and the passed on wisdom of the times. Like my paternal grandmother, Mary, she had the rosary beads and the bells of the Angelas, chimed out every day over the airs before the six o’ clock news on RTE Radio 1.
“Jesus the branch, Mary the flower, Jesus and Mary be with us this hour.”
That was the first and most simple way I learnt to call God’s presence into my heart. And I think it is beautiful.
I like to think that in the long tedious hours of aging my two grandmothers found immense comfort and strength and joy, which to me represent the enhancement of the human experience that I mentioned earlier, in the presence of God in their hearts. And I am grateful that Carlos and I made the decision to plant that seed in the hearts of our children. Now all that awaits us is its constant nourishment.
Tea and Toast Versus The Green Replacement
As an Irishwoman married to a Spaniard and living in Spain, I, on behalf of all my compatriots, have undergone on too many occasions denigration for the uninspirational and bland Irish cuisine. The usual culpable dishes to warrant this affectionate slagging are fish and chips served up in a paper bag, an Irish breakfast roll and tea and toast (the deep-fried Mars Bar has been relegated by my insistence to Scottish and English tastes mainly).
I usually retort to my adopted second nation, that they might have the upper hand with variety (octopus, pigs’ snout and trotters and lambs’ intestines, to name but a few of the many Spanish delicacies that would not show up on most Irish tables from one end of the year to the next), but if it weren’t for the oil (excellent in quality as it may be) and liters of it that all Spaniards insist on pouring into every dish and the kilos of salt used to heighten the flavor of all savory recipes, Spanish cooking would be as bland as anywhere else.
And what’s wrong with tea and toast anyway?
Bread propped up on a long fork and toasted by the hot coals of a dying fire in the sitting room. The butter melted on that charred piece of toast and washed down with a sweet milky cup of tea is hard to rival. That’s the way my mother and father used to drink and eat their tea and toast and it was also the beginnings of my interest in social history and development…”What! No such thing as toasters?”
Late nights or very early mornings, me walking home, usually alone, ahead of my younger brother David and older sister Catherine, waiting in the kitchen for them to arrive. David would shortly follow and Catherine, always the last, would stumble in the front door, kick off the heels or high boots, slouch back in the carver chair and mumble,
“Put on the kettle and a slice of toast.”
The best cure for any hangover!
The gossip about who danced with whom, who got off with whom, who was sick in the bathrooms and any other relevant business of teenage years would see us eat and drink our way through rounds of toast and a big pot of tea. (I dread my children’s adolescence).
Of course we all liked our tea and toast done in a different way. David and Michael preferred their bread more toasted, verging on the burnt (suspiciously carcinogenic). But the subtleties arose with the spreading of the Flora, mind, not butter, Michael preferring his toast to cool and to extend the spread to within a micrometer of the edges and David going for the melted in version of the same.
Catherine and I were more similar, liking our butter melted and the wars began when your slice of toast popped up too well done because one of your brothers forgot to lower the setting. And God forbid that the bread would run out before you’d had your fill.
The love of tea and toast and peculiarities of preparation have continued on into the next generation. On our annual summer holidays back home in Dungarvan with my three children, my mother and father have a path worn up to Mulcahy’s (Eurospar), and what seems like shares taken out with Baron’s bread, the round white and Baron’s brown sliced, if you please.
Ellen was the only one of my three children to be born in an Irish maternity hospital. She was due on my mother’s birthday at the end of April, but she decided to keep us all waiting until the 7th of May (a Taurus baby, just to keep her Taurus mother on her toes – the feisty interactions have already begun). But once she decided to come, she came at an almighty force and speed. Having labored for a short few hours and when my begging for an epidural were met with, “But darling you haven’t even begun dilating”, I succumbed on my bed to the pain and an hour later I screamed out (to the horror I’m sure of all the young labouring mothers cooped up in the same room as me),
“I HAVE TO PUSH!”
Rush, nurses, poking.
“Oh Jesus she’s crowning! Don’t push. Can you hang on till the delivery room?”
More rushing, wheelchair, running, Carlos, bright lights, cold delivery table, one little push and there she appeared. Mary and Noel’s first grand-daughter, the little beauty, who stole my heart away right at that very moment. It was the most painful and quickest of my three deliveries and the easiest one to recover from. And the best of all, at midnight, all showered down and resting on my bed, my little baby girl sleeping by my side, the night nurse comes in and asks,
“Would you like your tea and toast now, love?”
You don’t get that in Spanish hospitals and it was the most satisfying tea and toast I’ve ever had in my entire life.
So, I decided on a whim, with all this BC mullarkey and a fortifying diet, that I might meddle with the old remedy of tea and toast and try a substitute.
Well the tea was easy, green tea of course with thyme and artichoke leaves. It cleans the liver supposedly but it tastes very bitter so lots of honey is needed to make it any way palatable. But since it’s the good unrefined mountain brand of honey which has lots of natural anti-inflammatory and anti-bacterial properties, it can be justified when weighing up its high glycemic index.
The toast was going to be a little more difficult, or so I thought, until just the other day when my faithful friend Facebook, fed me a suggested recipe for bread. I’ll only mention a few of the important ingredients to give an idea of the degree of meddling I had to undertake: toasted sunflower seed meal (I won’t even go into the details but suffice it to say that between the sourcing of them, and organic at that, the roasting and crushing of them, on the hassle scale, it falls right off at the upper end), soaked chia seeds which looked gooey but not too bad, and arrowroot powder, which nobody has ever heard of here in Alcobendas, so I, in full experimental mode, decided to replace with organic cornflour, looking very yellow and very healthy.
Maybe two hours of preparation time later and a quick 40 minute bake in the oven, out came a delicious smelling bread, which I fully intended eating with my honey-sweetened cup of green tea.
Until I cut it.
The inside of the loaf was as green as grass. I spread it with my home-made tahini and a scrape of honey. I braved a nibble from the corner and quickly reached for the honey jar. More honey please, less green bread.
It’s been sitting in the bread bin ever since, I can’t bear to put in the rubbish bin where it really belongs because of all the energy I put into it.
Now with acute nausea, after my second session of chemotherapy, one look at the green bread and I can feel its colour reflected in my face and my stomach turns even more. I turn to Carlos, serving me hand and foot these days, and my request is simple,
“Tea and toast, please…Irish style!”
Mc Cambridge’s might be interested in the recipe for St. Patrick’s Day. Serving suggestion: lashings of anything that tastes good on bread!
Chemotherapy: The First Session
The four questions my friends, family and people around my neighborhood ask me these days are,
“How are you?”, “How are the children?”, “How’s Carlos bearing everything?” and “How’s your head?”
Thankfully I can respond positively most of the time and conversations often end by acknowledging the importance of a positive attitude.
I realise a positive attitude for me starts with an action, like deciding to exercise my arm and to be constant about it. When I don’t exercise it, I’m usually feeling down, so the positive action gets pushed aside. My Mum is my constant inspiration and driving force here as I recall how she single-handedly exercised her broken shoulder back to full capacity in record time.
Healthy eating which requires planning, shopping, cooking and eating are a multitude of positive deeds needing lots of positive energy. There are lots of hurdles here to fall down at and Angela, my sister-in-law, is my nutritional adviser and chef this week and keeping me on track.
As for positive thinking, I have never mastered any skill in honing my thoughts in on the plus side only. I’m not sure I believe in that. Sadness or fear or loneliness, even anger are valid emotions and perhaps when felt, named, acknowledged, and explored a little (with some therapeutic blog writing for example) maybe that’s displaying a positive attitude.
So what is chemotherapy?
Before starting I struggled to find anything positive or happy to say or think about chemotherapy.
It starts with a pill in the morning just before breakfast, to protect the stomach lining. A bowl of porridge and some acidophilus also helps with the stomach preparation. It then continues with a blood test and a two hour wait* for a consultation with your oncologist to get the results of the blood test. If you’re healthy enough, you can go ahead to get the neoplastic drugs pumped into your veins. If your immune system has been diminished so much by previous chemotherapeutic visits that you’re deemed too unwell to receive the hit, you go home until the white cells have recuperated.
So on my first visit yesterday, of course I was going to be healthy enough. I’ve been eating salads, vegetable soups and fruit cocktails. White meat, oily fish and legumes. Porridge, quinoa and multigrain bread, rice and pasta. Turmeric, cumin, cardamom, olive oil, lemon juice and seeds for flavoring. (Angela and the anti-cancer diet). My drink of election has been mostly tea, green, black, red, spicy, fruity. If it’s hot and wet, I’ve been drinking it. And lots and lots of water.
I’ve done my best to cut down on anything I think might be harsh on my liver. So no wine and just the odd sip of Carlos’ beer. Decaffeinated coffee for the last week and the vitamin supplements have been stored away for recuperation at a later date. I still enjoy ice-cream and chocolate and my biscuits for dunking since my weight is healthy, I’ve decided that looking after my endorphin levels is important too!
But there was still a part of me that was hoping the doctor would say,
“Ah you’re alright for another week.”
Anything to put the chemo off for another week. I’ve been dreading it for days but it’s not one of those therapies that can be postponed for very long as there is an accepted optimum window of time (4 to 6 weeks) after the surgery, in which to begin.
So what is chemotherapy?
Chemotherapy is waiting for your number to be called to enter into the oncological day hospital. A roomfull of numbered reclining chairs with drips beside each one and two chairs for companions to sit and wait through the procedure.
Chemotherapy is a reception with a nurse who greeted me with my name “Dairy”.
“My name is Deirdre.” I replied, “D.E.I.R.D.R.E.”
“Here it says DEIRERE.”
“That’s a mistake, I told them at reception last week…Oh never mind.”
“Chair 14.” the nurse indicated.
Chemotherapy is a quick glance around the room and spotting the old woman I had seen earlier, wheeled in, in a chair, either too sick or too tired or both to hold up her
head. And there she was sitting in a corner, with her aging husband and someone else, sister, friend or helper, receiving her intravenous therapy.
Chemotherapy is realizing that you’re not the youngest in the room. There beside the reception was a young beautiful tan-bodied twenty-something-year-old girl with her curly-locked wig tapping away on her phone and laughing with her sister or friend. (There are no children here and thank God for that because that would be too heart-breaking. Sick children are cases apart that need an extra special kind of love and attention I can only imagine.)
Chemotherapy is walking past all the other mostly older recipients lying back and I reading the number on their chairs. Five, nine, thirteen. Ah number fourteen, the empty one for me.
Chemotherapy is arriving at your chair, throwing your bag down on one of the accompanying seats, climbing up and stretching out your arm for being pricked (my vein port won’t be healed for use until the next session in three weeks time).
I hadn’t prepared myself for this, no tears in advance were shed because really I didn’t know what to expect and I denied doing any research. All the feelings associated with cancer diagnosis welled up in my eyes, anger, fear, sadness, disbelief and shock and the tears fell. I couldn’t hide them but it didn’t really matter. Somehow I believed that everyone in this room, cancer patients and companions alike had all been through the same. Felt the same feelings and cried the same tears.
Chemotherapy is sitting for your prescribed time to receive your prescribed drugs, reading books, writing blog posts and watching others, some snoring, some eating lunch, some doing crosswords.
Chemotherapy is waiting for the beep of your drug administering machine and for the nurse to come round and say, “one last dose of saline solution and in five minutes you’re done.”
Chemotherapy is arriving home, and following the advice of Belcha who went through this seven years ago, of resting up and moving around very little, drinking lots of liquids because the more you do and the less you drink, the harder the hit of the secondary effects will be. Twenty four hours later I’m still waiting. I’m feeling nauseous but that’s all for now.
There will be more side effects to come, once the drugs have had time to be absorbed not only by any stray cancerous cells around my body but also by all the fast-growing ones like in the skin, hair-follicles, bone marrow, mouth and stomach lining and bind with the cells’ DNA to prevent replication. So I’ll be busy over the next few weeks addressing my susceptibility to infection, the loss of my hair, the possible mouth sores and drying out of my skin and nails.
My first session is over, eleven more to go. Already my attitude is changing:
Chemotherapy is acceptance of and trust in modern medicine with all its wonders and flaws; persistence in the face of despair; hope in being cured for the future; faith in the hands of God or whatever one believes in and a love of life expressed by the will to continue.
Chemotherapy for me is having a positive attitude on a prolonged scale of time and a developing sense of special admiration of the very old and the very young, (and their parents who watch them receive it) for having the courage needed to accept this kind of bitter-sweet therapy.
*Waiting for Chemotherapy
I am empty
Like a water bottle
To the last drop.
No fountain gushing,
Onto this bench,
Where still I sit
With the sun
Reaching its rays
Out to drench me
A gentle warmth.
I lap it up
I thank the Gods.
From Earth I came,
With whose bounty
I will replenish
The coffers of my
I am down but not defeated,
I am scared but not trodden.
Standing up and facing them
Consenting to this bitter care.
In this life, in this day
This way to Resurrection.
The Chemo Storm
The next storm on this journey is brewing on the horizon. There is a whirlwind of papers and appointments, surgeon for inserting a vein port, rehabilitation for my right arm, schedule of dates for chemotherapy sessions, the first to start on the 14th of June.
My right hand chauffeurs are lined up, my father, my husband, my brother, my sisters-in-law, brothers-in-law, driving me to and from hospital, taking and collecting the children from school.
My replacement mother’s brain, heart and soul, is in situ, my own mother and father, co-ordinating meals, shopping, laundry, children’s entertainment.
Summer holidays, the most memorable yet booked with my sister, her husband and her children, my brothers, Mum and Dad, my sisters- and brothers-in-law and their children, family friends. The brochure looked fantastic when I made the reservation! A guarantee of sunshine in Northern Spain, country walks, flower-pressing art, bird table crafting, evening swims at the beach and it’s all on offer for…free !!! No hidden costs. There’s no where else in the world a holiday like that is available.
Carlos my husband is me so he’s right here riding the storm under my skin.
I need a brain massage. Nothing a good night’s sleep and the occasional whinge won’t cure.
My daily devotion from “Jesus Calling” by Sarah Young posted to me by my aunt in New Jersey is a little gem too:
“Relax in My healing, holy Presence…Let go of cares and worries so that you receive My Peace”.
Ahh. Ok I will. Thanks Renee. And thanks to all my aunts, uncles cousins and friends elevating me with thoughtful gifts, lit candles and prayers.
I’m going to take a rest from posting for a while. I’m going to ride the storm. I’ll let my impressions form, my thoughts arrange themselves and when I’m feeling better, I look forward to continuing this written journey.
I’ll sign out with my song of the moment. My children’s choir have finished all their performances for the year, Christmas and end of year concerts. Now they’re just singing for fun. I’ve latched on to this one: