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!

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!

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.

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.