Where do I begin…again. A year this week I wrote my first blog entry and was very faithful to it until I realized I didn’t really need it anymore. It made me smile on numerous occasions when people asked about it, when was I going to blog again…why did I stop? I figured when it became more of a pain than a pleasure, I’d stop….and strangely enough, I once again feel the need to write. So dear readers, please bear with me…I’m rather rusty…but I’m BACK!
To summarize last year, if it’s at all possible, I finished chemotherapy last September then within a few weeks, began radiotherapy with included 28 trips to the university medical center in Groningen…EVERY SINGLE DAY, in what i christened the “cancermobile”…an insured taxi service from Emmen which picked you up and brought you home (25kms) the entire 28 times. If you think radiation’s a piece of cake after the hell which is chemo, you are sadly mistaken…it was, for me, in many ways, much worse. It was this daily trip with other cancer patients…it was waiting your turn under the scary monster of an Xray machine in a huge waiting room with other cancer patients…it was 28 times being reminded that you, yourself are VERY much a cancer patient. It made me realize that not every cancer patient wants to hide the fact that they ARE indeed a cancer patient. (like I tried to do). I took pride (and still do) in looking the best I can possibly look even though I felt like crap lots of times (and still sometimes do). I found many young women of my own age also getting treated for breast cancer seemed to wallow in it, wearing scarves on their heads and almost repelling makeup. I had a hard time with these women, the very face of cancer…I wondered why, why would you desire to look like you’re being consumed by this horrible disease? I suppose to each his own, right? I found cheating illness helped me feel better!
I also found it strange while the majority of people have a pretty good idea what chemo’s all about, no one, including myself, knew what horrors awaited with radiation. No one clearly defines it…no one talks about it…but I suffered…and I will talk about it. Try an lie completely still for about 10 minutes…i mean not moving a hair (if i had hair)…it sounds easy but it became my daily torture…you are placed into some contortion and told not to move…and at that moment, OF COURSE my nose would itch…and then my cheek…and my ear…the placement was in itself one of the worse days of last year…I was require to lie in a CT scanner, naked from the waist up in a room with airco blowing on my for an hour…they apologized for the arctic air but told me this had to be done and they put in a complaint for me to the airco people….back to placement….this is when it’s determined where you’ll get radiation…this long drawn out procedure ends with the placement of multiple tattoes around your body. And yes, I have new-found respect for those souls who get REAL tattoes..i just have a series of black-blue dots on my torso to remind me of my battle. I had imagined getting a cute tattoo after it was over, saying “survivor” or something like that…but ok, NOOOOOO! tatooes HURT!
Back to hell called radiation…I got burnt…not just a little red flush…but I mean open, weeping second degree burns ALL over the right side of my body. OWWWWWW!!!!!! this meant daily showers and dressing changes…god help me I suffered through hell, though insisted on sucking it up and barreling full force right through it…who had time to complain and cry? I was too damned busy figuring out when the taxi was coming..when my radiologist appointments were, when the end of the line was.
Even though I was still all bound up in burn dressings, Wilfried and I treated ourselves to a little holiday in Zeeland and Brugge just before Christmas…what a wonderful way to truly “get away” from it all…to pretend I wasn’t sick…to go light a few candles in some huge cathedral in Brugge…it was simply fabulous.
The formal treatment was finally behind me and I was able to get on with life…be the old Suz once again…get back to work. I went to see the work-doc (bedrijfsarts) in the beginning of January and he explained about how you build up your working hours, etc…a few weeks like this…then adding hours on like that, etc…easy-peasy…RIGHT? I felt a sudden all-consuming panic inside me…ok he thinks I can go back…work thinks I’m ready to go back…Wilfried’s happy I’m well and says, maybe it’s time to go back….but I felt tired…so tired. My body had been through so much, also losing an incredible amount of weight in a year. I felt I had to get the flab kick started into some sort of shape so I started speed walking and then running…I felt I could convince myself somehow I was fit and healthy. So started eating better, just healthy things, no meat…no sugar….and daily runs. Man if I could kick cancer’s butt, I could kick my own! So I did…(and still am)….have lost over 50kgs (about 115lbs) …and still speed walk for an hour…every-single-day!
That’s the physical side of things…I guess looking at me you’d never guess how tough it all is, how difficult I’ve been having it….I’ve been trying to figure out what exactly is going on inside of me so I thought try writing it down, maybe it’ll help! You know last year how sick I was…I fought like a trooper…I never came home after chemo and cried…I never felt sorry for myself…never once felt beaten. I guess I expected things to be different now. I expected to flow into 2012 with the ease of an independent, healthy woman. Wrong…totally the opposite, my dears. I’m overwhelmed with my situation. I attempted work as I always knew it…my domain…Suzie-nurse! What a flop that was! I sat in my familiar, but somehow completely different office…I felt like a child behind this huge desk…what happened this past year? Where did the know-it-all nursey go? It was like a movie…like a time-warp or something. Everything looks vaguely the same but all impossibly, weirdly different. I felt a choking hand around my neck each time I attempted to work…tears just flooding my eyes…overwhelming, overwhelming feelings…so…difficult…so difficult to explain. The work doc explained it as some sort of abyss the cancer patient falls into after their therapy year is over…and what an abyss this is! Last year I was a star…I was surrounded by people’s warmth and kindness…I was held up by so many….and now as people assume you’re fine and well and getting on with life…you’re let fall. Normally…you can just get up on your own two feet and continue running on your own…like a child learning to bike….but I’m flailing around out here…I’m trying…but finding life after cancer-treatment much more difficult than being the star “cancer-girl” that I was. No, I’m not nor will I ever be completely free from cancer…it’s still in the wings…I certainly hope it stays there, severely wounded by the onslaught of chemo and radiation…it’s left me exhausted ..but I’m ready for anything. Work will have to wait…I’m on a mission to re-discover myself. I’ve physically changed so much that sometimes I don’t even recognize my own reflection. I think maybe who “Suzie” was inside has also dramatically changed…also a stranger to me sometimes…who is that girl who cries at the drop of a hat? That person choked with emotion? Life has changed in oh so many ways…but it’s not all darkness! How wonderful it is that I’m marrying my best friend next month? The angel who carried me on his back during my battle…how many marriages begin with the good times and bad…and the sickness and health all at once? He has seen me burnt and bald…but also lovely and blond! He’ll hold my hand and walk with me through anything that this life offers…I feel so incredibly blessed to have him, to have each other.
Thank you dear readers for listening….I shall attempt to share my continuing saga of getting well post breast cancer…I need you all…and need to know people still care.
The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.
Here’s an excerpt:
A New York City subway train holds 1,200 people. This blog was viewed about 6,900 times in 2011. If it were a NYC subway train, it would take about 6 trips to carry that many people.
OK, it’s never been easy, those post-chemo weeks, but I never counted on a week in hospital. I had had my few days of gastric-hell and was looking forward to my 2 weeks of feeling human again, before chemo, when the infection hit. I was feeling sick that Tuesday, like I was sub-human. Walking around in a sort of haze, indescribably ill. Without going into horrible details which would gross everyone out, let’s leave it at my mastectomy wound was infected, under my skin. Without hesitation I called the emergency at the hospital and they told me to come in and that I should expect to be admitted…that I had already figured out and was throwing underwear and jammies in my Red Cape Breton/Canada overnight bag while I was still on the phone. I would be once again and formally, a patient.
I should have known my hospital stay would have been eventful when we were met at the almost impenetrable doors of the emergency department by a very young, doll-like creature who introduced herself to us as “the doctor”. She had both the voice and the demeanor of a frightened child as she examined me and wrote down my history and present complaints. The pin-cushion treatment then began with everyone having a go at my left arm, the only place available to draw blood or to start IV’s. I was also seen by a surgeon who told me I’d be going to the OR sometime the next day to clean out my wound!! EEEK! Meanwhile, a very sympathetic anaesthesist skillfully started my IV, I was given antibiotics right away and swept up to a private room on the surgical unit to await my fate. It had gone almost too smooth until I was in my room and THINGS STARTED TO GO WRONG. I was being interviewed by a cheerful night nurse until I started to get searing pain in my left hand…she had just started my second antibiotic on top of the first one which I had received in the ER…obviously “not-done” as the entire IV tubing crystalized and these crystals were entering my blood!! The nurse was in quite the panic, pulled out my precious IV and was gone in an instant..and returned with everyone and their brother and began what I’ll call “keeping Susan unnaturally awake all night by shining lights in her face, taking her blood pressure and asking her if she was ok”. The sympathetic anaesthesist returned from home smelling highly of cologne and miraculously found another place for an IV first shot. I still am thankful for the skills of few. Over the next few days and questioning EVERYTHING which occurred, I came to realize how lucky I was that the crystalized-antibiotic situation was not worse than it was…
I am quite aware that perhaps I made the nurses and lab technicians nervous during my stay, but I didn’t really care. Everyone knew I was a nurse and although I wasn’t expecting special care, I certainly wasn’t going to accept sub-standard care, either. That being said, I cannot impress how often I found discrepancies with my care…who was ordering what and doing what and saying what, too many doctors involved. The morning after my admission the surgical staff and their exalted leader marched into my room and boomed that not only was I NOT going to the OR, but I was to be sent home with antibiotics and wound care administered to me by homecare!!! Before I could digest what was said, they were gone. I grabbed my mobile phone to relay this info to Wilfried and before I could hang up someone else stood by my bed telling me I’d be in hospital for a few days and certainly WASN’T going home! I then realized everyone was great at shouting orders, but no one wanted to take full responsibility allowing for my discharge either and I ended up staying till the weekend.
My hospital days were filled with wound care, people walking in my room without knocking, being pricked countless times, sometimes unnecessarily and dreading the foodcart. Thank god for my daily visits from Wilfried, something pleasant to look forward to each day. I had also been told by the dietitian that I absolutely HAD to eat, that my weight-loss was severe and that I was starving, essentially. How could I, the greatest food-lover on earth, get to this point of actually hating the sight of food? I also managed to ask for a scale, to finally confront my weight. As I teetered on the scale, I waited for the needle to indicate a soaring number I had always feared, however was surprised to see I now weighed less than I had years ago when Sonja Bakker and jogging were my best friends and I had dropped 25kgs. Strange to feel ones bones, to be able to cross ones legs, to easily be able to pick something up off the ground…feels like I’m in a stranger’s body. Thin, nauseous and weak….and picking at bits of food, counting grams of protein, hopefully able to swallow a few grams/day allowing my body to heal itself. May I add here how incredible difficult it is to force onesself to eat when nauseated…just in case someone feels like telling me just eat, already!
So here I am back home, happily where I belong and not without an almost ridiculous set of circumstances getting set up with home care. My dreaded chemo is cancelled this week, a week reprieve allowing me to heal a bit inside and out.
I know I sound ungrateful for the care I’ve received but that’s not entirely true. I have had incredibly kind and gentle nurses in the hospital, skilled caregivers and listening ears…a funny and surprisingly warm dietitian whom I gave a big bag of courgettes to, telling her how very healthy they are, and so far, super home care nurses who have taken over the tasks of the hospital staff. Yes, this has been a bump in my journey towards health, but it is what it is…I’m crawling over it now and will come running down the other side very soon. Thank you to all my friends who have supported me so far, you are, without sounding mushy, the wind beneath my wings….
Nesting. A complete foreign concept to me, something I’m heard about from expectant mothers. Preparing their warm little homes for new arrivals. From what I can figure out since my illness, I’ve been nesting with the best of them! My house used to be a place I came home from after long working hours, always. My entire adult life. I always tried to keep some semblance of order in my abode, to allow it to reflect who I was. Sometimes thanks to the help of a wonderful, Trinidadian cleaning lady in Montréal who allowed my place to sparkle and smell like pine trees, to here in Wildervank, by my Wilfried, who loves order and the smell of a warm meal cooking on the stove. Although I managed to live 9 long years of my life in another town in the Netherlands, with another man, I had never felt nested, it never felt like home. Something was missing, always. I suppose one can still manage to work long hours, be in a relationship and feel nested in their houses, but I always felt like a boarder in that dark, little, dusty corner of Assen, sometimes an unwanted one at that. I have memories there, some good, mostly ones I prefer to forget. It has been quite the revelation moving out of that situation and into my own little paradise, regardless of the illness which has accompanied me. It does seem rather ironic and cruel, but dear readers, please do not fret about me and my present situation, for I have been given many other opportunities and blessings. Now, I feel different in my skin. I have found peace. I am home.
We are now almost a year here in Wildervank, but initially I saw so little of my new little, white cottage on the water, it has only been recently, since my illness, that I have learned to respect and settle here properly.I surround myself now in gezelligheid, spend my time wisely, feel pride here. It has given me purpose to take care of my little family and home. Do I wish things were different? Do I wish this cancer had never crept into my life? Of course. Who chooses to be ill? Who wants to live in fear, who wants to die? However, without this pause, I would have missed out on so much. I always felt as though I was rushing, top speed, through life. Even living in the country, I was always in high gear…running to work, running home…time just to relax for a few minutes, then once again. Every…single…week. Work also ceased to be a place I could relax at, it became something I would lie awake worrying about, conjuring up ways I could make peace with a few broken work-relationships. Now that ceases to be a problem…I am home-bound. I must say with all certainty and abandonment, I am happy. I am the queen of my little castle. I busy myself looking for new, taste-bud tingling recipes which could break-through the chemo fog, slowly developing a folder where they all nestle, happily waiting to be lovingly baked and cooked by me. I joy in the harvest of our very own vegetables, handfuls of delicate courgettes making their way into my salads or being baked up in deep, cinnamony, cocoa muffins. I enjoy this…I am taking back control. I will not succumb to this medically induced stupor. I focus on contentment, peace, feeling balanced, a happy tummy!
Life-changing it is. How strange how things alter. Worries, fears, happiness, contentment. We are at the mercy of our health, our environment, of others. However, our nests are sacred. I wrap my lovely cottage and my small family around me like a prized quilt. I allow wonderful, loving friends in my little nest. I love sharing these feelings, my home, my cooking. Attempts at blocking the negative energies thus far is working well. The necessary journeys to the hospital and to chemo are steadies in my life. It won’t be forever. There is always the very welcome ride back home…down the long canal to Wildervank. My tiny corner of Groningen, my warm kitchen with the big green stove, my furry little animals, my man…my Wilfried, the protector. My nest.
Father forgive me for I have sinned….it’s been about a week since my last post…my sin? Enjoying these 2 weeks before my next chemo and not feeling the need to post! I’ve had loads of emails from people asking me if I was ok…yes! Very much so. Of course the first week after chemo is blah…but I now know that and plan accordingly. No long car rides, no fancy feasts, no cooking, limited visits. I just don’t have the strength nor the endurance…not to mention appetite to enjoy anything. Anything but devour the foodie blogs, chat about food with my foodie buddies, read my Oprah’s, watch taped episodes of Nigella or email my sister or a few kind-hearted souls who aren’t yet fed up with my bodily complaints. Once the annoying week is over I feel once again me. A new, relaxed, happy me….And this is the story of MY silver lining!
I once couldn’t imagine my life without working…being a nurse was so much more than a job …it was 75% of who Suz was. When I arrived in this country 10 yrs ago TODAY, I was positive I’d get a nursing job once I got the Dutch language up to par…well, dear readers, there was nothing less true. I was told my Canadian nursing diplomas were useless and that either I suck it up and work as a nurses assistant till retirement or get off my ass and re-study nursing with a bunch of fresh-faced 18yo nursing hopefuls. I felt I had no choice, off to school I went. My poison was Noordelijke Hogeschool in Leeuwarden, in the heart of Friesland…where the landscape is strewn with beautiful lakes and waterways and everyone speaks yet another foreign tongue, Friesian….GULP!…but I digress…I DID pass, with honours none-the-less and ended up after a few tries, in my beloved GP’s practice where I work presently. However, it was not without struggle as I once again had to battle with the docs about being able to use my hard-worked for title as NURSE, as I was hired as a “praktijkondersteuner” (now I’m officially called “praktijkverpleegkundige”..practice nurse as opposed to practice supporter or something like that…untranslatable I guess, but someone with a background as doctor’s assistant as opposed to a NURSE)…actually, a HUGE battle resulting with me working happily once again as a nurse…who I am. All that being said, I have found, as a result of my illness, that I’ve discovered a new Suz…not one who is 75% nurse and a little bit Suz…but a new, fresh variety. Yes, the bossy nurse in me still lingers in the background, but I’m learning to love this new me, this new life. God, yes, having cancer and all that goes with it still sucks…but I so love, for once in my life, NOT having to work! I love going to bed when I want, waking at 7 as opposed to the ungodly hour of 05h30 that I felt I needed 5 days/week….so regimented! I was like a robot going through the motions every day…sometimes dreading walking through the doors of work. Sad…so sad. Betrayal ..anger…exhaustion. Thank god for some true friend-colleagues who picked me up countless times when I felt like I was losing it…until….illness.
I have been forced by my body to stop…to slow down…to rest. This I also had to learn. I have been working since my 18th…full-time. It takes so much energy to have that put to a full stop, to succumb to it, to learn to heal…to love my body even though it’s been maimed, balded, broken and wracked by chemo. Dear readers…I have joy in all of this, unbelievable also to myself. Something I talked about to two of my closest friends over a relaxing lunch yesterday in my garden. I have learned to appreciate the quiet, slow life. I love making a nice waffle breakfast for Wilfried and myself, lingering over fresh squeezed OJ and coffees. What shall I do today? Bowels permitting, how about a country drive? How about a walk through Veendam’s center? A little shopping? flea market anyone? A marathon cooking chat on-line with my expat friends? Writing my blog!…I love it all…the peace inside me is pallitable…I smile more often…I feel free, happy. Weird, isn’t it? So many people feel pity for me..please don’t! This is the unexpected silver lining. I look back over the last few years of my practice…I love and miss most of it..but realize certain issues were stressing me out terribly..and no…not the patients…they’re the ones who kept my neck above water. They’re the ones I miss the most. They’re the ones sending me get-well cards!! But….I am allowing this now….let peace and wellness wash over me. I talk less and less about my work demons….I welcome a time when my chemo is over and I’m feeling healthy and strong once again…when work can signify a new start. A new me. The Suz who is yes, still a nurse, but has found her inner peace. Her silver lining. Who is 100% Suz. The new version.