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Archive for May, 2011

So THAT’s Chemo!

You know how you felt last winter?…you know….when you got the flu? I don’t mean when you got a head cold, I mean the FLU,  griep as the Dutch call it. That horrible aching-all-over, dizziness, skin hurting, bone pain, general horribliness? THAT’s CHEMO! Add to that side effects from a handful of medication you need to take before, during and after chemo…and you get the general picture. Chemo sucks. Actually the receiving of the chemo itself was the easy part. Nice, big, sunny room in hospital, 4 big lazy-boy chairs, your own “space”…4 hours of poison dripping into your blood stream, killing everything in its wake, hopefully. I wasn’t too impressed with the new-ish nurse trying to start an IV in the left side of my now thin wrists, scraping the IV catheter along the bone, missing my vein completely. She got the message rather quickly and called over the experienced one who managed to painlessly begin my infusion. I sat there for a bit waiting for nausea and vomiting to wash over me but apparently that doesn’t happen. If there is nausea, vomiting, etc…it usually occurs on the 3rd to 4th day or so, but they told me it’s SO different with each person, there was no certainty of anything. What was certain was that I was being pumped with anti-vomit drugs and they were giving me both hot flashes and sleepiness. OK, better than tossing your cookies, I guess! …and nope, haven’t been sick as yet.

We entertained guests over the weekend, Wilfried’s 2 sons and a girlfriend of one of them. They were warned about my condition…told that i may be anti-social a bit. What a pleasure it was to have them here! Took my mind off myself and made Wilfried incredibly happy and proud. The little girlfriend was cute as a button but could talk a rat to death and talked non-stop the entire week-end. Man, I was glad they stayed at a nearby hotel and that I allowed myself rest periods in between the talking. But it was fun, acting like a normal family and laughing at normal things was fun.

My nights are the most difficult….weird and scary dreams and pain. I was so proud before the chemo that my nights were pleasant, but that is behind me. I’m hoping with the days that my own body will gradually return as well as illusive sleep just in time to be bombarded with my next chemo in 3 weeks time. I’m wondering if you get used to this…the flu every 3 weeks. The flu with a bald head. My friend Janel’s knitting me a chemo-cap. Not really sure what it is, but I’m sure it’s warm and cosy…and will make its way here from Texas eventually to hug my poor old head.

Will I get through all this? Will it kill my cancer? I feel weak, a shadow of my former self. I hurt, everywhere. Walking to the kitchen hurts….taking a shower is a major event.   But my spirit remains strong and fighting…I can do this.I will survive.

 

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Quick up-date post!  I took part in a beauty workshop today for cancer patients called “Look Good, Feel Better”. These are workshops held periodically all over the Netherlands in different hospitals or in cancer walk-in centers.  Today’s was held in Delfzich hospital in Delfzijl, a town on the coast of the Waddenzee on the tip of north-east Groningen. I wasn’t sure what to expect or how many people would be there. We ended up being a small group of 6 women, all in different stages of treatment for breast cancer. All of us about the same age and all equally interested not only in each other but also in making ourselves feel better by being spoiled with attention and beauty products! There were also volunteers, making sure we all got drinks and cake, etc. (typical Dutch!!)  It was really nice! Of course me being who I am, I didn’t really learn anything new about creams and makeup (I’m a beauty-product and make-up queen!), but I really did enjoyed speaking to the women in the group and listening to their breast cancer experiences, all in some way different. I found it also super that we each got a goodie-bag filled with lovely full-sized products and we were all quick to trade colours and styles off with each other, each bag being slightly different.

http://www.lookgoodfeelbetter.nl/

Yesterday I spent the morning trying on and choosing a wig (s) for my bald, chemo days. I had SO much more fun than i thought i would, trying on everything from a dark Victoria Beckham look to a full-length Dolly Parton number. I finally settled on a really cute dark blond with bright blond highlights wig and am thinking of also getting the Victoria Beckham in a lighter colour for those days when I’m feeling particularly sexy! (will that happen? who knows?). Seems that my hair (what’s left of it) will begin falling out in the second week after the chemo starts…so I’ll get my wig next week and will get my head completely shaved as well…much easier to wear a wig on a bald head so I’ve been told. So that’s all set…

All in all VERY positive experiences, nice things to do the days BEFORE my chemo begins. I am expected in hospital tomorrow morning at 9am for chemo, the infusion taking around 3 hours. EEEK! But I’ll be there, face full of make-up and my ipad in hand. I am a cancer killing soldier. I feel armed and ready. I have behind me an army of friends, family and colleagues and to top it off the best partner on earth. If we could only teach our Yorkshire terrier, Pudding and our Jack Russell TERROR, Bill, to be sweet and quiet for their mother, we’d be all set!

Thank you dear friends,  for all the flowers, cards, SMS’s visits and calls…I feel a group hug always encircling me. You have all showed me more caring that I found possible…I will NEVER forget this. I am never alone.

love you guys!…..  Suz

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raw…..

Once again I’m amazed at how well I slept last night…could it be that I’m the perfect cancer patient and that nothing they throw at me is too much? No, not likely….I honestly DID feel overwhelmed yesterday…mega-overwhelmed. It was the lovely sleeping pill that allowed me my peace. That and exhaustion.

 I had my appointment yesterday with the oncologist and the cancer nurse. WOW! THIS was cancer personified. This wasn’t surgical, this is deep, cellular deep. It was scary, totally terrifying. But, as the ideal patient I’ve become,  somehow I got through both appointments. ending up leaving shaky, but relieved I knew more than before I got there. Chemotherapy begins this coming Friday…no easy way to say it. It’s fairly heavy chemo, they want to bash the hell out of my cancer, which, i’ve have been warned, is an aggressive variety. It’s not only chemo I’ll be getting, but a variety of other drugs used to boost my immune system, prepare my body for the assault and to help me with nausea and vomiting which goes hand in hand with the chemo. BAH! Here I was, the girl who was SO proud to only take the occasional Paracetamol….now I’m Suz, the walking pharmacy.

The first part of the appointment consisted of  the oncologist going over the bare bones of the plan…all in black and white. Chemo or death in other words. No beating around the bush for oncologists. They say it like it is. Without being allowed a breath, Wilfried and I were then escorted over to the closet (well, I believe it was an office, but was a horrible, closet-sized room with no windows…if you weren’t depressed before this meeting, the room assured you’d be when you left) where we met the oncological nurse-specialist who practiced the art of one smile per sentence which drove me rather mad by the end of the hour. Yes, you’ve understood correctly, not only was I still raw from the oncologist, I also had to endure a full hour of nurse-preaching in a closet.  It was Wilfried and I, the cancer nurse and a frightened little medical student of about 18 all crammed into the closet . We all got drinks…It was going to be a long session she warned me, you’ll need a drink.

Jezus, I needed more than coffee, I needed whiskey straight-up, in a dirty glass. It was information overload to the max . I’m so glad Wilfried was with me as he happens to be a super-sponge for information and could absorb all she was saying.  She fills you in on EVERYTHING YOU WANTED TO KNOW ABOUT YOUR DISEASE AND CHEMO, but were AFRAID to ask!  But it ended up sounding like an adult speaking in a Charlie Brown cartoon  : wah-wah-wah-waah….chemo…wah-wah-wah-wah…bald…wah-wah-wah-wah…nausea…wah-wah-wah-wah…eating properly….exercise…..  Whatever.  She also produced a tight little ring binder I christened “my bible” which contained all said information which I promised to read and make my own but probably won’t. Oh my! could this be Suz being defiant? Probably.

It’s all going to occur whether I’m being defiant or not, whether I like it or not. It will be my life source. It will be precious and the only thing which will keep me alive. It will kill my cancer. Let’s all say that one more time..IT WILL KILL MY CANCER. It’ll also probably make me sick as hell, but it will make me better.   The oncologist hopes. The periodically smiley oncological nurse hopes. Wilfried hopes…I hope.

I felt raw yesterday. Like an open, festering wound. I wonder if these health professionals think of you after you leave them. Do they wonder how you feel, how you cope?  I even asked the nurse if people were really able to take it all in after one session. She had to admit she didn’t think so. No joke, really? hmmmm….I’m now using these few days to collect my feelings, to get my sexy ga-ga wig, to go to the pharmacy to get back-ups, to buy my eyebrow kit. All activities which would have seemed ridiculous months ago are now my glaring reality. How am I doing this glorious Tuesday morning?

hmmm…wah-wah-wah-waah….

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the new me….

A couple of days ago I spoke to someone (who shall remain nameless) who was horrified by my blog and couldn’t believe I’d write such intimate things here, accused me of saying bad things about them(?). They just didn’t get it. They actually told me to “shut up”…threatened that they’d never read my blog again!  Geez….I was speechless, for about 30 seconds. 30 seconds is my limit. I need to speak, I need to deflate, write it down, spit it out. I won’t shut up. I won’t stop writing. And to be honest, I’m not writing for anyone in particular at all, dear readers…I’m writing for me. Now that’s been said, on with my writing….

This week’s been pretty exhausting for me, as most weeks have been since diagnosis. Exhausting waiting, waiting for appointments, waiting to hear what’s next…waiting to get on with things…then exhausted mulling over what’s been said, exhausted with myself, with worry, with pain. Went to see the surgeon this week. No big surprises, just confirmation YET AGAIN that I have lots of breast cancer…and YES, it’s into my lymph system, meaning I NEED chemo, I NEED radiation…maybe also needing hormone treatment after the other things are behind me. Next week I go see the oncologist and nurse-specialist. I’ve been told the chemotherapy will also begin next week. The sooner, the better. They want to slam the cancer NOW! Of course I knew all this even before I went to my appointment, but hearing it exhausts me. They look at me, waiting for a reaction…my voice quivers. I want to be strong for my Wilfried who is sitting beside me. I will not cry. Doe maar, I say…ik ben klaar (let’s do it, I’m ready) I squeak out in Dutch. Ik ben een tough-cookie I tell the surgeon…she laughed and said she thought so, patting me on the back.

That night I didn’t sleep a wink…I played the appointment over and over again in my head. I imagined the chemo flowing into my veins…I imagined every scenario known to man…I remembered preparing and giving chemo to kids while I was nursing at the Children’s hospital way back then. I remembered Maria, a 16year old Venezuelan girl who had leukemia. She was gorgeous, long black hair, make-up and red nail polish on her fingernails and toes. Her family was well-to-do and had flown her up to Montréal for a bone-marrow transplant. Although she was given super-strong chemo, was sick like a dog and although her hair fell out she didn’t blink an eye. She got up every morning and put make-up on, did her nails, and pulled on a gorgeous real-hair wig which enhanced her spectacular beauty even more. She was my hero. She was a survivor…she actually did very well, went into remission and she kept in touch for years. I do believe she was healed completely. I want to be just like Maria.

With this in mind I decided it was time to be creative with MY hair. We called a local kapsalon and they were just super, so obliging. One of the hair-dressers came over this morning and we just clicked. So, we had a long talk about my cancer and my hair and then we got down to the nitty-gritty. She cut my hair. I sat there shaking, in the middle of my kitchen with the plastic cape around my shoulders, tears rolling down my cheeks, big locks of blond hair falling all around me…I managed a whisper. Managed to ask how it was looking. Much to my surprise she told me it was turning out fantastic! It just HAD to be better than the unruly mess it had become in the past weeks. As she did her bit with hair dryers, mousses and sprays I waited  impatiently as always….ok, maybe I’m no Maria from Venezuela, also no Sylvie van der Vaart….but I’ll pass with a push as mom used to say. I’m sort of happy with the results! It’ll be short-lived you do realize. Once the chemo starts it’ll be baldness, billiard-ball, Wilfried baldness..it’ll be hats and scarves and wigs. But for today this is Suzie…changes sometimes are easier to accept in stages. I feel pretty, Wilfried loves it….but our poor Bill doesn’t recognize me and has been staring at me since the hairdresser left!!haha!

I’m once again ready…ready as you can ever be for something like this. And I’ll keep writing about it…no one in their right mind will be able to stop me!!! Look out world, here I am, new hair-do and all!….have ‘puter, will blog…and may I be bold enough to say if someone doesn’t want to read, please don’t!! No obligations!!

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over the rainbow….

I shot this image last weekend. It says it all, doesn’t it? Luck, optimism, pots of gold…Is this what is in store for me? Is this my future? I’m hoping so, I’m hoping that what I’m now experiencing is just a little bump in the road.

I wake up every morning in pain. I don’t mean the little aches I’ve always had, a stiff back or neck or something like that. I mean pain. I mean an almost 10 out of 10 on the pain scale. My left shoulder is white-hot and the pain of my mastectomy pulls and burns. My eyes fill with tears. Will it improve? Ever? Will I get sicker? Everything is relative, isn’t it? Back in my pre-cancer days I complained a lot about my little aches and pains as do most of us. My hands hurt a lot, aches of old-age I’d been told. Aches I hardly feel now. My present pain exhausts me, wears me out even after sleeping eight hours. My miraculous sleep. Sleep has always eluded me, I have been the worst sleeper on earth. I have worried and twisted and turned in bed, sleeping an hour here and there, always awaking before the sun. Not anymore! Thanks to my free-thinking and empathetic GP, I sleep. I take one little sleeping pill and something for pain and I sleep through it. To sleep, perchance to heal. I thank him…every morning when I look in amazement at the clock and it’s 7am…thank you! Eight lovely hours where worry is gone, where I feel no pain, when my body can relax and heal. Thank you.

Back to the hospital tomorrow…back to plan B, worked out on paper. Nervous? a bit. I don’t like hospitals. The feeling of someone else holding your precious future in their hands. I can’t help feeling claustrophobic there, always looking for my escape. Yuk!! But that is tomorrow, another day.

Today I’ll hibernate in my cottage. Wrap myself up in a blanket, take some pain meds, pull my little dogs close, grab a big mug of honey-laced tea and escape into the movies. One of my good friends sent me a few dvd’s which I’ll watch today, escapism at its best. Colin Firth…Julia Child….love  it, love it!!

Wish me luck for tomorrow…every visit to the hospital, although difficult, is necessary. All chapters of this book, my book. My story. What a page-turner it is!

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Mastectomy….

Well, the first step is behind me, I’m home from the hospital, I’ve had a mastectomy. I’m official now. I’ve joined the millions of other women who have lost their precious breasts to cancer. Although the three-day event in hospital was pretty awful, the actual surgical site, the incision, wasn’t at all physically painful, and continues to amaze me this morning! I think the most painful thing about the experience was the complete and total lack of privacy and sleep. This became evident upon my arrival Tuesday afternoon to a hospital room full of cackling hens all ready to pounce upon me and my reason for being there. this cackling didn’t let up until the moment I walked triumphantly out of the room yesterday at 15h00.

The woman in the bed beside me insisted on reminding me time and time again how deadly cancer was and how many people she knew who have died from it. She also announced to the other 2 women that I was MUCH sicker than them and deserved all the nurses’attention. (this of course became her biggest annoyance over the 3 days I was there). She really wanted me to be upset about having breast cancer and having to have a mastectomy and I think it totally annoyed and amazed her that she didn’t get what she wanted, which was tears and gnashing of teeth. What she got was a women who got back from surgery and promptly got on her ipad and chatted the day away with her buddies on-line! love that!! But, geez, hospital life is sooo different being on the other end of things…I wasn’t (mostly) being a nurse, I was being a sleep-deprived patient.

Sleep is totally a thing of dreams in hospital…everything is geared to KEEPING YOU AWAKE AT ALL COSTS. Lordy…. yelling, beeping, pain,uncomfortable beds, lights…annoying, complaining  roommates (did I mention that before??), a big thunder-storm and a crazy asylum seeker running up and down the halls all evening, yelling in arabic. (after a hysterical nurse dove into our room in fear I finally took over and in my bossy head nurse voice demanded she call security which she did and then things became quiet) I don’t think I’d ever been so tired in my entire life. I was exhausted to begin with from not sleeping the entire night before my surgery, then add to that anaesthesia and being kept awake all day yesterday and no sleep the night after surgery I was close to tears yesterday from exhaustion…I SO wanted to go home. The surgeon came by yesterday morning just at the same point as the breakfast cart and the room was packed with everyone and their brother. That’s when it was apparent one of my drains had fallen out and I was covered in ick. Of course this was of great concern for the surgeon who announced at that point those covered in ick may not go home!!!! AARRGGHHH!!!!….so my mission from that moment on was to de-ick myself and GET HOME! ….and ….mission accomplished! I was showered, dressed, de-icked and home at 15h30!! YAY!!

 I’m home, I’m ok, I’m alive. I just showered for the first time…removed my dressing and put on normal clothes. I feel normal, pretty good, in fact. I even called Wilfried to come upstairs and see my perfect incision. He had prepared himself as best he could before hand, surfing to all these breast cancer websites, looking at all sorts of incision photos. Mine, of course, is prettier and better than all the others. It’s mine. He thought it looked good, as do I. A HUGE improvement over what my right breast had become over the last weeks. I no longer feel infected, no longer poisoned. I feel fresh and clean. Of course my left clavicle still is a great source of pain and now even more so as I imagine my position on the OR table aggravated it. So I’m now all about healing, being quiet, taking care of myself, allowing myself to being cared FOR. I’m slipping more and more into the patient role…Strange feeling, but it feels ok.

Next week back to the hospital for plan B…I’ll find out about what they have in store for me..my plan to get better, heal, stay alive. In a few weeks I’ll also be the proud owner of a brand new silicone breast. I have some sort of temporary one right now but it feels too light, too unnatural and can’t wait to feel normal again in the boob/bra department. So once again I wait..I’ll be patient..I’ll heal. I’ll enjoy being spoiled. Bring on plan B!!

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acts of kindness

As my surgical date approaches over a couple of days, I’ve looked back over the difficult times I’ve been through since my diagnosis of breast cancer. Yes, it hits you in the stomach like nothing you’ve ever previously felt, yes, you think you’re dying…yes, you feel as though you’re sometimes hanging on by your finger nails on the edge of an abyss, yes,yes, yes! But what it has offered me is a new appreciation of the kindness of the human heart. I have experienced such unadulterated kindness and love over these past weeks. It’s been my medicine, it’s held me up when i felt like giving up…it’s wiped my tears, it’s made me cry. I feel wrapped in it.

How can you measure love and kindness? Well, dear readers, you simply can’t. You just know it. Wilfried has commented countless times how overwhelming and wonderful it’s been for the both of us. People have warned me that at diagnosis people react a certain way, then they’re gone…back to their lives. This hasn’t happened! Everyone has stayed next to me, arms linked, facing forward with us. I am so grateful. No act of kindness goes unnoticed…whether it be from a neighbour from Assen just dropping by for coffee, or my ex-manager coming to spend the afternoon in my garden enjoying tea and cake. It has been the X-ray technicians taking pity on me (being a nurse in the neighbourhood and knowing half the patients in the waiting room) and keeping me in their area, letting me have all my scans/x-rays and mammograms one right after another, out of sight of the prying eyes of my own patients. It has been the lovely pink sunhat from an expat group (perfect for my chemo-days), the gorgeous flowers, cards, cookbooks, sms’s and mails. The delicious homemade veggie pies from my young neighbour or my step sons arranging a weekend to come see me. It is our best friends just being themselves around us, cooking for me…plying me with mojitos. love that!

I feel ready, I feel armed. Your acts of kindness keep me going, keep me alive. My wonderful Wilfried and I have unbelievably also drawn closer to each other since diagnosis. I never thought that could be possible, but it is.

Bring on my surgery. Bring on my chemotherapy. I am ready. My cancer has to realize I am also  surrounded by an amazing group of  doctors and nurses who assure me they’ll do everything in their power to help me, and an army of friends and family who love me. I will fight. Watch this space…I WILL survive!

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