Well, I should have heard it but there I was, completely oblivious and sitting alone in the middle of the tracks. The station slowly emptied and that strange sound was becoming louder. There was no way it was a whistle. It must be somebody singing. After all, only last week I had been told with a smile, "There is a light at the end of the tunnel and it's not an oncoming train." Irony is really funny sometimes. Suddenly the station was empty, the tracks were rumbling, and that damn whistle was now completely deafening. Yet, there I still sat, all alone in the middle of the tracks with a stupid smile on my face.

The last few years have been hectic, stressful, insane and physically exhausting. Working on my computer science degree once both kids were in school full time seemed like a good idea at the time. I naively assumed that my time would belong to me. What a silly thought.

 

We were told when our son was three that he "just dipped into the autistic spectrum." In hindsight, I see that the specialist was being kind and was breaking the news to us in such a way that meant she wouldn't have to admit us to the psychiatric ward at the same time. Other people might look back and be resentful but I remember her fondly and appreciate her perceptiveness of human nature as well as her kindness. 

 

If autism had to become a part of our lives, I'm grateful that we didn't know until after our daughter was born. We might have thought twice about having another child and a world without Lizzy would be a dull place indeed! She is beautiful, endearingly affectionate, and has a capacity for compassion that exceeds Ghandi. Above all, she is an absolute scream and keeps us in stitches a lot of the time. 

 

Fast forward through the years and the 'me' time has been filled to the brim with appointments for my son. Despite our best efforts, his autism became more and more severe and there were never enough hours in the day.

 

The most difficult thing to explain to anyone who doesn't live our lives is the heart-breaking decision to send our son to a residential school. The deciding factor for us was the painful realisation that he simply was not and never would be happy in our home, despite our best efforts to change it into something that would bring him the happiness he should have.

 

After much scrutiny, a school was found. We would have him until September by which time I would be finished with my degree. Yes! I was on my final term!! (Time to step up and take over Microsoft!!) Although the remainder of the year would be difficult, it looked as if things were finally going to settle.

 

And so I went to the last meeting with my son's psychiatrist. He praised our dedication and love for my son. He told me that we had gone many years beyond the point where most other parents would have "thrown in the towel." (No matter, the guilt still remained.) And then, there it was, those final damning words: "Don't worry, Mrs. Barclay. There is a light at the end of the tunnel and it's not an oncoming train." 

 

Fast forward another few days as I sank down into a bubble filled bath tub. It was here that I met another bump in the road. Well, actually a lump in the road but I prefer to call him 'Mr. Lumpy.' I rang the doctor's office the next day figuring it would be a waste of my time and hers. The doctor assured me that Mr. Lumpy was most likely a side effect of the anti-depressants which I have been on for years. (No surprises there really!)  This meant Mr. Lumpy was harmless but a trip to the breast clinic was in order. 

 

Fast forward another week where I walked into the new 'fast-track' breast clinic on my own. I didn't bring anyone with me except Mr. Lumpy. The waiting room was crowded with women. After a while, I realised that only half of them had appointments. The other half were supportive friends and relatives. An overwhelming sense of compassion came over me for these women who surely must have breast cancer. Why else would they have brought their friends? I had only brought Mr. Lumpy for company and he was completely harmless.

 

When it was my turn, the breast surgeon agreed that Mr. Lumpy looked harmless but took a needle biopsy to be certain. Being a 'fast-track' clinic, I was told to return in 30 minutes to get the results. I returned in less than 30 minutes and waited.

 

And waited........

 

Patients who had had appointments after mine were being called in for their results. The waiting room was thinning out. The Great British Menu was on the TV and one of the chefs was preparing a chicken with a can of beans in the middle. An actual can of beans. I mean, not just beans, but the whole damn can! Sorry, but that's just lazy.  Someone else was cooking lamb on a bed of hay. I remember laughing with another lady in the waiting room about the hay. Where did they get the hay from anyway? I mean, how did they know it was clean hay? Surely it didn't come from a barn?? Well, you never know. Some of these artsy-fartsy types might think it gave it 'authentic' flavour. Silly stuff really but we were all having a giggle.

 

And there I was, the only person left. It crossed my mind once or twice that this probably wasn't a good sign but it was more likely that they'd forgotten me. Right?? Train tracks anyone?? Whistle??  Yeah, cue the whistle. Dammit....Five minutes later my name was called.

 

Besides myself, there were three people in the room; the surgeon, the surgical nurse, and a breast cancer nurse. Not a good sign. The surgeon got straight to the point. "Much to my surprise, Mrs. Barclay, the biopsy revealed cancer."

 

Now you might think that most people would crumple to a hysterical heap on the floor at this point but I know how much treatment has improved over the years. The advertisements on television are constantly going on about an 80% survival rate. Although my grandmother died from breast cancer, she was diagnosed in 1975, medieval medicine in the world of cancer, so I wasn't scared yet. My thoughts at this point were that I would say goodbye to Mr. Lumpy via surgery, have some radiotherapy and be sent on my merry way.

 

Silly, silly me. In spite of the fact that the obstetricians referred to me as a senior mother when my first child was born (I was 34!)), I was suddenly young again. Well, too young for cancer anyway. And since I'm a spring chicken of 43, the treatment will be to remove Mr. Lumpy, followed by 6 months of chemotherapy, followed by radiation therapy, and possibly finished off by 5 years of pills. Well, yippee!! 

 

If the word 'cancer' doesn't stop you in your tracks, the word 'chemotherapy' will. That's what stopped me. The thought of losing my hair (not my life, mind you) turned me stone cold sober. Silly really, but sometimes it's the small things that are the hardest to face.

 

"Are you sure about the chemotherapy?"

 

"Yes."

 

"Am I going to lose my hair???"

 

"Yes."

 

"Well, SHIT!!"

 

This conversation was followed by a few tears and some pathetic sniffling on my part. I then asked for a piece of paper and a pen to write everything down. Although you just know that there is no way you will ever forget this moment, there is no way you will remember all the details. Ah, the brain is a lovely thing, isn't it?

 

Calm discussion and explanation followed as I furiously scribbled down every word that was said. I did find time in the midst of all this to grill him about his surgical skills. Something along the lines of: "How long have you been doing this? How many of these procedures do you do a year?" Sorry but I'm not having some newbie surgeon use me for practice.

 

The breast cancer nurse brought me a library's worth of information and then went out to get a book for me to take home and read to my daughter. It was at this point that it occured to me again that I was going to lose my hair and hey, chemotherapy makes you vomit. (I don't know why but throwing up really upsets me and makes me cry like a big baby. Sheesh!!) 

 

After few more tears and pitiful sniffling, the surgeon's nurse assured me how fantastic he was. She said he was the head of the department and he had treated her best friend the year before. Believe me when I say that was a valuable reference. Most of my working life was spent with doctors and there were a few that I would want working on me even if it wasn't their specialty. There were also a few who I wouldn't have let near me with Q-tip! 

 

Life is about to change in a HUGE way but I have so much in my favour that it is unbelieveable. There are a few things that I would like to point out before anyone thinks I am feeling sorry for myself or that I expect sympathy:

 

1. If you think things can't get any worse, think again. If you've hit rock bottom, don't forget there is also six feet under! Even in my current situation, I have things in my life that I wouldn't trade for anything. Throughout my life, any time that I ever started to feel too sorry for myself, I always seemed to come across someone whose situation made mine look like Sesame Street.

 

2. I am still happy, no matter what. Sympathy doesn't help but empathy does. My husband is an unbelieveably fantastic man and I couldn't have dreamed of better children. Friends who care and are laughing with me are worth their weight in platinum.

 

3. There is still no God. I have had any number of people (mostly friends of my parents) saying that they are praying for me and putting me on prayer lists. I haven't said anything about my atheism because I know they are well meaning and it gives them comfort. But all credit to my survival is down to myself, my surgeon and modern medicine. If science ever finds evidence for God, I would definitely want to meet him so I could bitch slap him right up and down the street! ;-)

 

4. This whole thing is really, really kind of funny. I do have a fantastic sense of humour and you just couldn't write this stuff.  Hey, chemo will make me skinny and maybe I'll get a new set of perky breasts out of the whole ordeal.

 

5. While I do have a great sense of humour, I will NOT be laughing about the baldness, DAMMIT!!!

 

I'm not sure why I've decided to blog on this other than it feels pretty good to get it all down on paper (well ok, pixels). Oh yeah, and  I know that no one here is gonna be putting me on a prayer list!! If you've managed to read this far, do you think you could answer one question for me??

 

Why oh why couldn't I have had ass cancer instead? I mean, really! I've got two gargantuan tumors on my ass (probably 20 pounds each) which I would have been thrilled to say goodbye to.

 

Views: 7

Comment by Heather Spoonheim on May 11, 2011 at 4:46pm
Thank you for sharing and being so candid.  I know nothing of dealing with cancer so all I can do is repeat your observations on how far things have come along in medical science.  As for having a child with autism, I have a little understanding from my volunteer work and second hand through one of my cousins who was profoundly disabled.  I know many parents struggle to find a balance between giving all they can yet holding back enough so there will be more to give tomorrow.  I feel fortunate to have heard this much of your story.
Comment by Luka Rek on May 11, 2011 at 5:54pm

I know an old lady (not really old but older than you) that went to a clinic as well. She waited around 40 days for the results. But, again unlike you, she had grown so sick with worry that her hair almost fell out before she even got the result. Of course, unlike you, her tumor was found to be benevolent. Unfortunately, what most people do not realize is that stress, constant worry without a proper cause and feeling sorry for yourself can do as much or even more harm than the thing which caused it - unlike you

Get well! Keep the attitude!

Comment by Jerry Telle on May 11, 2011 at 10:18pm

5. While I do have a great sense of humour, I will NOT be laughing about the baldness, DAMMIT!!!

 

SHAVE YOUR HEAD AND GET A FLIPPIN' WIG -- YOU'RE GORGEOUS

Comment by Galen on May 11, 2011 at 11:43pm
Loved reading that, thanks for posting!  I'd take Jerry's advice and just get a wig.  Go ahead and shave it now and wear whatever hair you want! :)
Comment by Steph on May 12, 2011 at 4:46am

Wow, thanks to everyone for the comments. :-) I didn't think so many people would actually read this!  Thank you also for not sending prayers my way. LMAO

 

@Flower and @Luka: I think I should clarify something about the clinic because you were surprised by the speed of my results. (I was surprised too!! :-D) I'm not sure where either of you live but I'm here in the UK. The NHS (National Health Service) has introduced a new 'fast-track' clinic. (Not sure when it started exactly.) But the idea is that you get the results the same day which allows for treatment to start ASAP for people like me.

 

I can only assume that there is a pathologist dedicated to each clinic. I found out later that one of the reasons that I was the last patient to be seen was because the surgeon went back to the pathologist to double check that it was actually cancer since Mr. Lumpy looked harmless. Also, this happened the Wednesday before the Easter weekend so he also wanted to make sure that all of my appointments were set up without delay.

 

I did return the following Wednesday for a core biopsy (which confirmed the original diagnosis) and said goodbye to Mr. Lumpy this past Friday (6th May). Fantastic pre-op sedatives, by the way!! :-) I was giggling my head off as they wheeled me into surgery. :-D Post-op drugs not so helpful. grrrr! 

 

@Jerry and Galen - Thank you very much!! That is exactly what I'm planning on doing. I saw someone about a wig before I even went in for surgery. I was so impressed with the wigs which looked so natural and even better than my own hair!! Truthfully, I was ready to have my head shaved right then and there so I could walk out with that gorgeous hair I had tried on. Unfortunately, she had to order the wigs but I will have it done before I start chemo in a couple of weeks. I will post a picture for laughs! :)

 

@Heather - Thanks for your comments. I would like to tell you that you have no idea what a huge impact your work has on families. If it weren't for caring people like you, families like ours would have ended up in a psychiatric unit long ago! You can really feel good about any help you give to these families because it means more than I could possibly express. xoxo 

Comment by Heather Spoonheim on May 12, 2011 at 5:04am

@Steph

 

Thanks, it means a lot.  From my side it's not much to 'give' because I often get a few weeks at the lake for free in exchange for keeping a mindful eye on some kids.  I get to have fun running around blind folded in water fights (a lot of the kids are sight impaired) and paddling around in a canoe.  When I guided blind cross country skiers I got a few (mostly) free ski trips to the mountains.  When volunteering with kids I get to feel young again, and when volunteering with the elderly I get to feel young still.  It's also obviously a huge difference when it's a temporary choice.  For the most part I think I get back a lot more than I deserve.

Comment by M on May 12, 2011 at 1:09pm
Thank you very much for sharing your story with us.  I hope that you keep sharing your journey-- I know I, personally, will be rooting for you (and I suspect the rest of us will be, too).  It's gonna be a rough road, but I love your optimism.  I think that's huge.  Keep smiling, keep fighting, keep loving, keep living your life.  Hey, bald may be fun!  (And if you don't like puking, you make sure those medical folks give you something to help with that.  If the first meds don't help, be persistent.  Don't be fearful of speaking up, OK?)
Comment by Steph on May 13, 2011 at 5:49pm

@Heather - You aren't giving yourself enough credit. If you are enjoying yourself, then the people you work with are getting even more out of the experience. Certainly much more than someone who's just there counting down the hours. There's nothing wrong with having fun while you're working with these people. And there's certainly nothing wrong with doing anything that keeps you feeling young!! :-)

 

@M - Thanks so much. Don't worry, I'm not one to keep quiet if the meds aren't working. I worked with doctors long enough that I don't view them with the fear and awe that a lot of people do. I obviously appreciate the effort that they have put into their education and careers but they're just as human as the rest of us. (I was a 'minor celebrity' at one office where I worked for years because I gave one of the doctors an earful when he had a tantrum! heehee) Thanks again and I will keep this blog updated with what's going on or anything interesting or funny (not cancer related) that I think people might be interested in. :)

Comment by Alayna on May 13, 2011 at 6:39pm

Steph, for one thing, you're a wonderful role model to so many ppl, esp women who have had to deal with breast cancer, or will in the future.  Your candor and honesty is applausable...thank you for sharing such difficult parts of your life.

With such a great outlook...you'll be fine in no time!

Hang in there...you can do it.

Alayna

Comment by Steph on May 13, 2011 at 7:25pm
@Alayna - Thank you! I truly believe you can will yourself to live through just about anything, except maybe getting squashed by a steamroller or something. (Which is probably what I'll feel like after chemo. LOL) Thanks again for your comment and I think (I KNOW) I'll be fine. :-)

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