Breaking Down Bad

Today, I got put in a time out room.

Wham!

Just. Like. That!

Don’t worry, I wasn’t channeling my inner toddler and there was no kicking or screaming or dropping to the floor.   I was managed very discreetly with grace and finesse. One must not upset the other patients you know.

I had travelled to a gynecology appointment in a major hospital in the big smoke. I’ve been precariously teetering on the edge of despair, as I’ve not been living but merely existing through 12 months of pelvic pain of increasing severity.

The last seven months has seen…

  • Five exciting transvaginal ultrasounds (also known as dildo cam) to monitor my ovaries.
  • An elevated result for an ovarian cancer marker (which can mean quite a few things that have nothing to do with ovarian cancer).
  • Two physical pelvic exams with an onco/gynecologist who has extraordinarily gentle hands and excellent bedside manner. But this still involves WHOLE HANDS INSERTED INTO SACRED BODILY PLACES!
  • Months and months of abdominal pain, that at times feels like the onset of labour and at other times feels like my ovaries will explode from my abdomen in poltergeist fashion.
  • No ovulation. Zilch, nada, nothing! Despite having enough oestrogen in my pre menopausal state to initiate a great coral spawning on the Great Barrier Reef.
  • Fortnightly episodes of pain that is associated with internal bleeding which the docs think is either from my hemorrhaging ovaries or endometriosis being stimulated by Tamoxifen Tamoxibitch.  This brings on pain when going to the toilet, pain when sitting down, pain when coughing, or standing, or hugging my children, or trying to make their lunch, or talking with the school mums.

It is wearing. me. down.

And I’m here sitting in a hospital waiting room, AGAIN.  Reflecting on my life and how it came to be an endless train ride, stopping at all stations of overly cautious and expensive medical management.

This is what cancer treatment turned me into. Stanford Blatch. Does anyone know where I can get me a diamante or glo-mesh jacket?

How could I get cancer and be transformed so stunningly from pre cancer Lisey to Stanford Blatch from Sex In The City, a five-foot-four, bald, gay, guy who rocks a fedora or a diamante blazer?  How did this happen?

I’m fat, I’m bald, and living in pain.  Cosmopolitan cocktail anyone?

Why does it feel like my pelvis is trying to kill me, if not kill me then perpetually make me miserable and unable to function?

Did breast cancer treatment do this to me? Or would some of this have happened to me anyway?

Anyhoo, back to the waiting room today.

Where all of my hopes were pinned on finally meeting with the experienced specialist that I was referred to. Today was the day I would get some answers and a plan. There would be someone to review all of my tests, listen to me and reassure me that I would be okay and end my year long trail of despair.

So I, (aka Stanford) sat in a crowded waiting room which was comprised of 95% antenatal patients and 5% gynecological patients.  For two hours I watched an abundant stream of pregnant women waddle into their appointments. I sat reminiscing about my own pregnancies and fertility, floated deep in thought about the miracle of life and the totally amazeballs job women’s bodies do at growing and delivering babies.

Finally, after two hours of waiting amongst the bellies, I was called. I gathered my belongings and made my way across the waiting room.

The doctor I had hoped to see was not standing in front of me. I would be seeing a totally different doctor who wasn’t really qualified to help me.   He said my pain didn’t sound like any pelvic disease but surgery was necessary to try to diagnose. After fifteen minutes of discussing breast cancer, and fertility, and ovaries, and endometriosis, and pelvic adhesions, the replacement doctor offered to operate on me but recommended I return home and start Zolodex (and enter menopause). It might fix all my issues before the wait list for surgery shrinks.

I left the consult feeling like I had been dismissed. I didn’t feel I’d been understood. Was that the best advice?  I felt lost and confused.

I’m not sure I even know what I want anymore? Can I even advocate for myself? I’m not sure what to do or how to proceed. My quality of life is deteriorating. It should not be like this post treatment. It just shouldn’t. By now I’m supposed to have hair, and be moving on with my life and I’m grappling with decisions about menopause and hysterectomies. About dumping Tamoxifen in favour of other post menopausal cancer therapies and there are severe quality of life consequences in all of these BIG decisions.

Back in 2013 the craziness of cancer treatment spanned four seasons. Summer hit and I was finally finished with active treatment.  Just three months post chemo and (coincidentally?!?!) around the same time I started to take Tamoxibitch err, Tamoxifen, my ovaries decided they would start working again as some mutant one eyed deep sea monster, lurking in the shadows of my recovery. They would rear their heads at different moments and then dive deep again, but always with a menacing, shadowy presence.

In these last two years, everything that makes me a woman has been attacked. My body, my fertility, my sexuality, my looks. Bang! Bang! Bang!

Enough already!

I left the consult and returned to the waiting room.  There I sat for another hour waiting for a pre admissions nurse to meet with me and take my forms.

2. “Have you ever had surgery?” Tick the box.

            Yes, yes, yes.

3. “Please list the surgeries you have had.”

           Blah, blah, blah.

5. “Any allergies to medications?”

           Well there was this one time a nurses head turned into a granite boulder and rolled down the hospital hallway crushing theatre staff…

9. “Do you have any implants?”

           Yeah, kind of. Are they important? Or is it only dentures, pacemakers and cochlear implants that matter?

11.”Are you on any medication?”

            Let’s not speak Tamoxibitch’s name.

13. “Do you have depression?”

            No and it’s a miracle I don’t.  Really, it is a fricken miracle! 

*this is not actually how I answered the pre admissions form. Would have been fun though.

It was back in this waiting room, with a new batch of pregnant ladies around me and whilst I completed my questionnaire that it happened.

Tears.

Trickling down my cheeks.

I scoured the immediate surrounds for a box of tissues, there were none. I had to use my hands to wipe the tears away.  I’ll also admit to using my sleeves to wipe away some snot.  Not a box of tissues in sight!

I cried for what had been taken away from me in the last two years.

I cried because I’m sick of waiting in hospitals for doctors.

I’m tired of retelling the story with each new doctor I meet.

I’m tired of hospital cafeteria coffee.

Tired of pain and illness.

It’s no secret that my husband and I were trying for number three when I was diagnosed with breast cancer. And I remember that awful moment at diagnosis when I thought I was actually pregnant. How in the hell could I deal with being pregnant and having breast cancer at the same time? I shudder to think about the “what ifs” of that scenario.  I never felt such a surge of relief as the one I experienced when my period finally came in the days after diagnosis.

When this whole fiasco began, the sole focus was on getting through it. It was clear to me that this would be the end of adding to our family. Having a hormone positive cancer would mean another pregnancy would expose me to elevated levels of oestrogen and put me at greater risk of disease progression. Even though the science doesn’t actually know if this is fact. It is a very complex thing.

With a grade three cancer, we just dived right into treatment. The decision was made not to have Zolodex to protect my ovaries.  I had two kids, I was in my late thirties. There wouldn’t be a need to undergo IVF before chemo. I think I was sure.

But that doesn’t stop me grieving. It doesn’t stop me getting emotional in aisle five at the supermarket when I walk past the teeny tiny Bonds singlets or the baby wash.

And although I am incredibly happy when I hear of friends who are having babies there is grief still. And this grief is not just about breast cancer.

I think it comes from another place and time, I guess.

From the time I survived an ectopic pregnancy between the births of the two miraculous children I have. This ectopic was diagnosed at 12 weeks after a perfect storm of medical system diagnostic failures. Several rounds of poor imaging which missed it, combined with some sleepy doctors who didn’t arrange the right tests for me that would have picked it up weeks earlier.

As it turned out, I had 1.5 litres of blood in my abdominal cavity. Slowly rupturing over weeks and weeks and weeks.

“Ectopics are notoriously difficult to find,” they said. This, despite having several late stage ultrasounds that (apparently) showed everything (uterus, tubes and ovaries) was normal.

My doctor and I wrote a letter of complaint for what had transpired.

I was told the doctor who wrote my ultrasound imaging reports at the centre was moved on. Moved on to where, I wondered?

After the emergency surgery to remove my fallopian tube and a twelve-week foetal mass, I was sent to recover in the maternity ward.  I remember coming to and hearing the sound of a crying newborn somewhere across the hall. I managed to pull the crying into my dream state, and there, I gave birth to a healthy baby girl.

When I finally did wake up, it was to the sound of a breakfast trolley being wheeled up the hall and a tray being delivered. I was empty. There was no baby for me. Just a sore abdomen with some new scars and one less body part. I was terrified by the threat to my future fertility.

For weeks after that, friends saw my swollen abdomen at the shops and congratulated me on my pregnancy.

Women have these “events” all the time in their reproductive years. These private losses with their private grief (as do their partners) and they soldier on silently. The last 12 months were supposed to be about regaining my health (and hair) and moving on, soldiering on in silence as all those brave women do.

And I wouldn’t even be writing about this now, if I hadn’t fallen into Cancerland and blogland a few years back.

But I guess these “events” fill us up over time.  And it all overflows from me now in the waiting room of this crowded antenatal clinic.

Thankfully, a you beaut admissions nurse came and invited me into her room, and instead of just taking my surgical forms, she gave me a chance to express how I felt. She listened to my grief and my confusion about how to proceed.  She arranged for a more senior doctor to be paged for me to see.  I was then taken to wait for her in a time out room private, quieter room as to not scare the other patients. I was given a cup of tea and my own box of tissues.  My very own box!

The time out room

The time out room – aptly named by my friend Marina who happened to call my phone at this precise moment of my solitary confinement.

The most amazing surgeon and doctor I have yet to meet on this journey entered the time out room.  This doctor was the splitting image of Claudia Karvin, the Australian actor.  I’m not sure, when Claudia gave up acting to become such an outstanding gynecologist. But here she is sitting in front of me!

Dr Claudia read my file notes and reviewed all of my tests.  She looked me in the eyes. She listened. She empathised. In contrast to the previous advice I had received, she advised me that if she were my mum or sister she would get me to have laparoscopic surgery first before making any decisions about menopause.  Switching my ovaries off so soon would hide the conditions I have so that I might never be diagnosed and treated properly.

But I’m stuck asking the question is this a result of chemo and Tamoxifen, or would all of these issues be occurring anyway from my previous ectopic? It’s really hard to know. Perhaps this might have happened to me anyway even without cancer treatment?

It may be that Tamoxifen is not for me and Zolodex may be necessary after all in the months to come. Zolodex would switch my ovaries off to prepare me for a hysterectomy down the track. Hormone positive breast cancer patients cannot have (HRT) hormone replacement therapy. So menopause would be brutal.  And it’s really about weighing up quality of life issues and carefully balancing the opinions of my oncologist to optimise my chance of keeping cancer away.

So I am scheduled for surgery within the next eleven weeks.  Dr Claudia will use keyhole surgery and a camera to look for signs of Endometriosis, Adenomyosis, or pelvic adhesions, and the general state of my mutant Tamoxifen effected ovaries.  She will fix what can be fixed.

This will then allow my trusted oncologist to make a more informed decision about hormone approaches to take with me going forward.

Despite sitting at this hospital for five hours, it ended well and my sanity has been restored.

Dr Claudia was so engaging and so supremely knowledgeable that I didn’t even feel the need to lower my gaze and look at her footwear.

It’s been a while since I experienced a crush like this.

Dr Claudia was happy to pose for this shot.

Dr Claudia was happy to pose for this shot.


23 Comments on “Breaking Down Bad”

  1. katelharc77 says:

    Oh Lisey, you have been dealt such a tough hand. I’m not sure if I’m even qualified to comment on anything, besides understanding the feeling that your real life has been hijacked so unfairly by Cancer and its posse of toxic treatments. I do understand the grief you are feeling for that pregnancy that will never be. It’s just not fair. I’m so glad that after that horrendous wait you did end up seeing someone who was willing to listen and qualified to advise you properly. (Claudia is on my girl crush list too BTW) Best of luck for the laparoscopy surgery. I hope it sheds new light on where to go from here and sets you on the right path for a life without pain from here on. Thinking of you. Xxx

    Like

  2. katelharc77 says:

    PS your writing is fantastic. 🙂 and your paintings too – you have a real gift! X

    Like

  3. Lisey, I am so sorry. This just stinks stinks stinks. Xoxoxoxo.

    Like

  4. liza hopkins says:

    hope the key hole surgery goes well and u feel less pain in the future ur an amazing woman so love reading ur blog love hugs and positive thoughts to u and ur lovely family love u liseyxxxxxxxxxxxxxxx

    Like

  5. I just can’t imagine. You think it’s all done when treatment is done, but it seems to never end. I’m so sorry you have to go through all this crap. I’m glad Dr. Claudia saved the day for you. And kudos to the kind nurse. 11 weeks seems like a long time to have to wait for your surgery, especially if you are in so much pain. 😦 Sending prayers and good vibes your way. Hugs!

    Like

  6. Barb Metelmann says:

    Too, too much for a soul to bare, no wonder a time out room was necessary, thank goodness for the kindness and common sense of the nurse who found you Doctor Claudia, you must be beyond exhausted, positive thoughts being sent your way xx

    Like

  7. tgouthro says:

    I’ve been meaning to try and contact you personally, having just decided to get (I think?!) the same reconstruction surgery as you had. Reading this, the last thing you need is to be going back there. I wish you many more moments of calm, and far fewer moments of those unbidden tears. I know them well. Very uncooperative, they are. I had some in my principal’s office last week. I just asked him to pretend they weren’t there while I talked. He was much more cooperative than the tears. Hugs.

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  8. Anne Puckey says:

    Ohh Lisa, you are so, so amazing! Can hardly see what I am writing here for the tears! You are just the best in the way you deal with so many setbacks! My loving thoughts are with you as you face the next cliff. I know you’ll climb it successfully. 😘👍

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  9. Nina Vincent says:

    I’m sorry to hear that pain and hospital waiting areas are still familiar items for you. However, there are still some hysterical moments in there. I always find I’m laughing out loud in inappropriate settings whilst reading your prose on the mob. Keep writing. You are one talented lady. Keep being your fabulous you xxx

    Liked by 1 person

  10. You’re an incredible woman. Thank you for so elegantly describing what women go through and thank you for being brave enough to tell your story. How you manage to write with such humour and grace is amazing. I’m sending so many good vibes your way for your surgery and a big hug for being so bloody ace. Oh and here’s a cyber Cosmo for you too lady, I’d buy you a drink any day x

    Liked by 1 person

  11. thelilawolff says:

    I just want to give you a big hug or be able to sit with you in waiting rooms and hold your hand. I can’t imagine the pain and stress you are dealing with. Only in a small part because I also had an ectopic pregnancy that went to rupture due to all kinds of mistakes, not as far along as you but I remember feeling like I was dying, I remember the emptiness you describe. I’m so sorry that you’ve not only gone through that but so much more.
    I’m so glad you’ve gotten a Doctor who makes you feel heard.

    Liked by 1 person

  12. tw says:

    I identify with so much of what’s happened to you, through cancer and other causes. It sucks, all of it, and it takes so much energy just to keep going, remain functional, avoid frightening the other patients. Three years ago I was a woman in a woman’s body. Now I see myself as alien and asexual, neither one thing or another, genderless. It’s a strange place to be and it has taken time to come to terms with it. Whatever your way forward, I hope it helps alleviate your pain, physically and emotionally, because you really don’t deserve to be contending with all of this.

    Liked by 1 person


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