Cancer, Sex and Partners

The topic of cancer, sex and partners is a sensitive subject. There are no winners just plenty torment, frustration and tears involved. My parent’s marriage was destroyed after thirty-eight years because of my father’s behaviour changing. Unbeknownst to the family he had an aggressive brain tumour growing in his head. My mother at the time repeatedly requested help because his behaviour had gradually become erratic, but her pleas were met with silence. She had started to refuse his advances within the bedroom because he had become not the man she married. In the end because of her own health worries she started divorce proceedings in hope someone would finally listen. Two years later he was diagnosed with the brain tumour and the divorce had been finalized. My mum said I tried and I told them something was wrong and no-one would listen what could I do? When she found out what had finalised their marriage she could only grieve in silence. They still loved each other right up to my father succumbing to the tumour within seven months of the diagnosis, but neither side had the support to reach an understanding on what truly was the problem. My father passed away without my mother by his side.

My marriage too has had its moments of unanswered questions. I discovered that my husband had been seeking attentions elsewhere January 2010. I can’t prove it was sexual because I was never in the same room as the two love birds, but every now and then in a fit of rage even now I show my discontent at finding a love note in his bag. Of course well before the cancer diagnosis there had been other tensions for my husband to seek attentions elsewhere, but all the same he was in the wrong.

When I discovered that love note my husband insisted it was done in jest, but it did not read like a jest to me. 

‘Stefek (means Stephen in polish) That’s for you small but still yours…’ written on letter headed company paper with a tiny heart.

I felt like my world had crumbled and my marriage had become a farce. When I look back I remember him jokingly threatening me with going in search of sex elsewhere which he now denies. When I discovered the note I reached out to friends asking why? And their reply was simple he was an idiot.

The pressures he had placed on the marriage meant it was only a matter of time before cracks appeared. Even my husband’s father had said clearly there were pressures placed on the marriage that should not have occurred, but it was down to both of us to ride the wave. My cancer diagnosis had become the wake-up call for me to remove those building tensions, but I was not prepared for the threat of another woman as well.

Like must who become a victim of betrayal I take responsibility for some of the issues within my marriage, but I refuse to blame cancer. I have warned my husband I too despite my cancer can find attentions elsewhere. Not only that I freely discuss those men in the side lines. His polish cleaner is not the only one that can be added to this marriage. Oh yes I had narrowed down who it might be too.  

I clearly discuss my husbands’ Mr Meaners as a way of showing him I am not the one who will sit on the side lines. Whether he did or did not I was going to freely talk about it. If he was innocent then he had nothing to worry about and it would be me under question and my behaviour.  

Cancer is not the reason for a couple breaking up. It is one of the many ingredients’ used as a pathetic excuse for communication breakdown.  Sex whilst an essential within a marriage can be an unwanted pressure whilst going through the mill of treatment.

I personally know that I am not in the mood for sex, but there is sex and there is making love. Sex is a quickie and you roll over with zero emotion. Making love involves foreplay and romance that is not one sided.

Cancer treatment and making love has a delicate balance which involves patience and foreplay. You need to be reassured and to be stress free. If you want to rekindle the flames of passion try taking your time and court your partner. And if you truly respect your partner you will put the effort in.

I personally don’t know where my marriage will end, but I have noticed since my recent recurrence my husband’s behaviour is now more supportive.  He has a guilty conscience because he strongly believes stress is the reason the recurrence developed. Yes every now and then when he is late I do have my doubts and I clearly voice them, but for now my priority is to completing my radiotherapy. This is from my husband’s mouth not mine and we are communicating more.

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Keeping Busy and Beating Cancer

Dear Dr S,

Re: SARAH MENDOZA, D.o.B 29/07/1970

Hosp. No. ******** NHS No. **********

18 **** **** Road, ********, Middx *** ***

I saw Sarah today for her 6^th and final Cycle of Adjuvant FEC 75 Chemotherapy. She has some right cording and superficial thrombophlebitis which for the latter I have given her Doxycycline, since there is some question as to whether she is allergic to an antibiotic she was given at the time of her portacap insertion. I today considered her for Adjuvant radiotherapy to the left reconstructive breast and I have also commenced her on Tamoxifen which will start with the first week of radiotherapy. She is going to have an echo-cardiogram prior to commencing her septin loading in March.

With many kind regards

Yours sincerely

Mr L

Note there is no mention of therapy for my arm. And I don’t think my GP sees the damage as being superficial especially when he was pushing me on my last meeting to complain to PAL. Oh and my GP has had a clash of words with Handsome Mr L before now over another issue.

In the mean time I’ve been keeping myself busy. First I and Sophia met Samuel L Jackson which was brilliant. Second I have been designing/making Sophia an Egyptian costume for school. 

not quite completed

1 day later completed

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Children and Cancer Awareness Adverts

The unpredictable Mr Grumble is back with vengeance and with good reason. Yes whilst I’m halfway through my treatment and I should be celebrating finishing the chemotherapy. Part of me just wants to find a desert island to protect Sophia.

Out of the blue my young daughter said, Mummy it doesn’t matter if you die of cancer I’ll be alright… because we all die. I instantly start reassuring her that I’m not going anywhere.

But how can a child come to this conclusion about cancer?

Well for the record it was not through me or my husband because why would we discuss anything so negative with an eight year old child. No it boils down to the several adverts that run repeatedly with statistics’ on cancer types and survival rates. Sophia has put two and two together and her conclusion was the above.

So what was our solution?

Well I and my husband have been discussing for some time about getting Sophia to learn an instrument. Thankfully with me being an extra on the music video 'Baby Love' I was able to turn to a friend who was more than happy in helping me out.

I want Sophia to learn the Piano this meant less television and less cancer adverts. Don’t get me wrong this was not going to be cheap or change the outcome, but we are prepared for this. I can’t dissolve the damage done, but we can keep moving forward in hope the damage is not too deep. 

Yes whilst these adverts are informative and are raising both awareness and funds they should ask how it affects families with children who are innocent to the realities of cancer.

My last lot of chemotherapy has come and gone, but now I have to prep myself for the twenty-five sessions of radiotherapy over five weeks, so by bringing a musical instrument in the house gives our family something else to focus on other than my treatment. 

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2013 Resolutions for Hospitals: “Let’s Go, People!”

US Surgeon General Regina Benjamin, MD

 The end of the year is jammed with big medical conferences, aimed at improving healthcare quality. In Baltimore last month, I and a small tribe of patient advocates were thrilled to join CMS (the Center for Medicare and Medicaid Services), the Partnership for Patients, several other sponsors and nearly 1,300 “thought leaders in American health care quality” for QualityNet 2012.

So what were the opportunities/marching orders we came up with for 2013?

1)    Patients can help fix health care. Use them.

2)    Hospital C-suite types are still worried disclosing medical harm to patients will lead to lawsuits. Please get over it. It just isn’t so.

3)    Many hospitals (you know who you are) aren’t trying hard enough to reach performance goals (PfP goals are to reduce hospital readmissions by 20 % and healthcare-acquired conditions by 40 % by the end of 2013). You need to step up. If you can’t do it, one patient advocate has a simple solution for you. (It’s at the end of this post).

Sitting in the audience, I loved much of what I heard. There was Jessie Gruman, a multiple cancer survivor, offering her take on the big buzz-phrase in health care: “patient engagement”. As she rightly points out, the millions of dollars invested in her various treatments are dependent on HER engaging to find the right doctors, choose the best treatments, manage surgeries, drug treatment and care delivery. Never mind the medical, lifestyle, emotional and spiritual gauntlet she has to manage in between. In the absence of electronic health records (still not ready for prime time in many respects), the smooth operation and integration of one’s care REQUIRES the patient to engage. In other words, patient engagement isn’t a pleasing option, like sour cream with your baked potato. Without patient engagement, the potato doesn’t get cooked.

Few people have earned their stripes on this topic as much as Gruman. Founder and President of the non-profit Center for Advancing Health, she’s beat back five life-threatening illnesses, including stomach cancer diagnosed just two years ago.

Three of her most Tweet-worthy points:

1. “We (patients) know mostly nothing about health care. We don't want to know. We approach on a need-to-know basis.” (Gruman has 11 physicians she has to see twice a year, so she needs to know a lot). Not one physician, she says, has ever communicated with another. “This is not a good idea.”
   2. Despite all the hoopla over IT, “there is no ‘killer app’ that will make us [patients] engage”.
   3. “Engagement is not compliance". (Love that one.)

Virna Elly then told us what it was like to have lived with type 1 diabetes and chronic kidney disease for most of her life, and a successful kidney-pancreas transplant eleven years ago. “I was a Medicare and Medicaid beneficiary by age 32.” Her plea: “We need more than a line at the end of a conversation or pamphlet telling us to ‘ask questions’. We need time to process and absorb, then ask questions. Why don’t you ever ask ‘what do you think of the information we gave you’? Why don’t you follow up? You need to meet patients at their level, how they need [information], when they need it.”

Poised and articulate, business suits mostly covering their accumulated battle scars, these were just a couple of the well-chosen patient presenters whose presence, learnings and good sense  were warmly received by a receptive audience. By all means, let’s work on developing this partnership in 2013.

Tim McDonald of UIC talks "transparency"

Disclosure and Transparency are here to stay. Embrace it! We (patient advocates and providers) had a bunch of workshops during our three days in Baltimore. In the first few minutes, we’d brainstorm topics, after which we’d break into small “table discussions”. People could vote with their feet, joining the group and topic of their choice. At our standing-room-only table, a lively exchange on “patient engagement” proved how much work there is to do. A hospital CEO (by all accounts a very intelligent and well-meaning CEO) posed her concern: her hospital’s risk assessor continues to insist transparency and disclosure (coming clean to patients/family when a medical mistake is made) increases the risk of a lawsuit. NO NO NO!  This is a gross fallacy, perhaps perpetrated by the “ACME Risk Analyst Association” (I made it up, but you know what I mean) for their own (guess why) purposes.

The plea I’ve heard from patients echoes the findings of a bunch of studies: Often, all an injured patient and family may really want is to know what happened and why, perhaps an apology, and to receive a reasonable monetary award (see story on the Malizzo family, below). In an effort to achieve that, dozens of states have passed what are called “I’m Sorry” laws. They allow a physician to discuss openly an adverse outcome with a patient and express empathy. The University of Michigan Health System pioneered this approach back in 2001. When medical harm happens (and it does, everywhere), they investigate, notify patients, and offer compensation when employees are found at fault. The health system says it’s had fewer lawsuits, lower liability costs and faster resolution of medical-error cases since the policy was implemented.

Yay! Results! Some HENS (Hospital Engagement Networks, contracted to deliver on PfP results) and hospitals presented data that show they are doing good work, able to put aside conflicting agendas to work together and deliver results that save lives. How great is that? We applaud the hard work it takes and celebrate this success. Not just for the lives saved, but because it proves it can be done.

There was much celebration of successfully instituting “hard stops” to early elective deliveries (EEDs, in the medical acronym lexicon). A good thing indeed, but described in some circles as “low-hanging fruit”. (No disrespect, but simply ending elective deliveries prior to 39 weeks’ gestation doesn't require as much teamwork, nuance or organizational culture change as, say, making sure patients leave the hospital prepared and equipped to manage their care post-discharge.)

Fact is, as some grumble, some hospitals are resisting the PfP objectives. They have no results to show. They haven’t joined the “patient engagement” bandwagon, either too frozen, too uncertain, or worse, too arrogant to dig in and do the work. Heck, they’re hoping the bandwagon will go the way of the stage coach: a product of its time, but merely a transient chapter in history. (And what, exactly, happens when the PfP contract expires at the end of 2013? No one is sure.)

Barb & Bob Malizzo at QualityNet2012

Bob and Barb Malizzo of Hobart, Indiana, whose presentation ended the conference, have a few words in response to this attitude. Their moral authority comes at a terrible price. Their 39-year-old daughter Michelle, mother of two little children, had entered the hospital in 2008 for a routine liver stent replacement and suffered brain damage from an anesthesia overdose. She was put on life support, and died nine days later. In the wake of this devastating event, the hospital’s chief quality officer, Tim McDonald, did the best he could do. He told the Malizzos he’d find out what happened, did so, disclosed it to them, apologized, changed hospital policy around quality control during anesthesia, and worked to make them whole again. Today, the Malizzos are part of the hospital’s quality improvement efforts. They not only weigh in on cases at the same hospital where their daughter died, but travel to conferences with McDonald and present “the layman’s perspective”.

I sat with Bob and Barb at the end of day two of the conference. They are a warm, sincere and engaging couple, though their grief over losing their daughter is never more than a word or gesture away. “What did you think?” Bob asked me of the last two days’ events. “Well”, I began, “it’s great that the patient perspective is such a big part of this.” Bob looked pointedly at me. “What about the hospitals that aren’t stepping up?” he said. “For every one that’s working on getting better, a bunch of ‘em are dragging their feet.”

I looked at him. “You have a point.” It was clear he had something in mind. “You’ve been a business owner,” I said. “You’ve even been mayor of your city. What would you do?”

He leaned in. “When people don’t perform, when they don’t do the job they’ve been hired to do, there’s only one way to go.” He beckoned me closer. “You fire their ass.”

Ah yes, there's that. 

Is this little-mentioned option really an option? Do you want the board of your hospital considering such decisive measures? If so, maybe you should let them know.

Or-- what are your best ideas to achieve the PfP goals within the next twelve—now eleven-plus-- months?

Because the clock, as they say, is ticking.

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One Step to Cancer Free 2013...

The pond has become a wishing well with the fish like sharks protecting its treasure trove of wishes never to be repeated.

My visit to the big CC hospital on the 31^st December reveal sometimes stomping your feet and speaking to the right people actually works. I don’t know if my MP or just those few people that I vented too intervened and opened my team’s eyes, but it looks like I am finally being heard. I saw handsome Mr L at the clinic and we spoke openly about my arm and he assured me that it will be sorted. The arm has yet again flared up with the Thrombophlebitis, so he could see for himself how much pain I am in. Handsome Mr L has put me on an even stronger course of anti-biotic to try and clear the inflammation. He is also arranging therapy to get my arm back to normal which he says is achievable.

We spoke about the next route of treatment which means five weeks of radiotherapy for 30 minutes every day. The reason for five weeks of radiotherapy and not three is because of the reconstruction. The threat of damage to my lower part of my left lung which is said will only be 1% is the only issue that will arise from this therapy. No matter which way I look at it each therapy will leave its own individual scar which I have to live with. The other issue is my recon will become deformed and may harden which then will require tweaks. All the issues that could arise were clearly explained in full and now I feel comfortable again. There is no need for me to see PAL or feel neglected any longer. The stress of the last few months has subsided, but. .. And there is always is that but… 

The sister at the clinic was not a normal smiley self and I do believe that maybe she was the one who had to explain how my condition had not been picked up sooner.

When I spoke to my husband about the tension he said well of course. The sister is the eyes and ears of the clinic and she is the one who sees you before any consultant. If you had been complaining about your arm and a person at the Maggie Cancer Centre had to step in then that is embarrassing for the clinic. Thrombophlebitisis rare and when it occurs someone has not been checking you correctly. 

I do hope this is the last of my issues with this treatment, but who knows all I can do is stay positive and take every day as it comes. Roll on the New Year and my final cycle of FEC 75… 

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Prevention in Hope of a Cure..

We all talk about New Year resolutions of sort’s this time of year, but the resolution of hope is something that echo’s stronger than ever. Hope is something I grasped onto from the very beginning whilst combing through the internet for one little bit of info that will end the nightmare before it even began. Yet the reality that many fear after years of treading the positivity cloud and seeing many lose their brave fight. That hope is a mere illusion that hides the silent tears.

Hope is all we have; hope is what keeps us going. Yes and hope can be replaced with despair when yet another face fades away thanks to cancer.

Cancer is so complex we are very much a long way from finding a cure a researcher told me this year. It could be ten years or thirty who knows before a cure is found. The truth is more and more money is being ploughed into early detection that’s how complex cancer truly is.

Cancer patients are surviving longer now than ever before, but nothing is mentioned about those women that put themselves threw new drug trails for that word HOPE!

I am personally grateful to those ladies that selflessly and silently do their part without receiving a thank you. These women are the ones behind a lot of the research into finding better target drugs until that illusive cure is found. And not one receives a payment for what they do… unlike the corporate drug companies that rely on their help.

Prevention in hope of a cure for cancer is the path men, women and children currently face. It is a harsh reality, but the truth behind the cancer lottery… let alone the breast cancer lottery.

Happy New Year!

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The Best Christmas Letter You'll Ever Read

Back when our youngest was seven years old, we were as crazed as any two-parent family who worked outside the home while raising three kids. Mornings were such a mad dash I actually showed up to work once wearing two different-colored shoes. Just getting dinner on the table was an Olympic event. Worse, our middle child, while she adored her big brother, had taken a distinct dislike to her little sister, and relished every opportunity to show it. For all the times we caught her in an eye-roll or a mean word, I knew there were dozens of snarky moments we missed.

The holidays loomed, filled with obligations, to-do lists, and long lines at the post office. 

The only thing missing was any spirit of Christmas.

One day, shortly after rescuing the guinea pig from the heating vent where she'd been chased by the dog (don’t ask), I called everyone to the kitchen. Adopting my best don’t-mess-with-me “mommy” voice, I told them this Christmas we were going to do something new. Each of us would write a letter to our family. We would say what we loved about each and every member of the family. No negative stuff (sternly intercepting older daughter’s furtive glance at little sister). We would read the letters out loud on Christmas Eve, after a dinner we would all pitch in to cook together.

The moaning began right away, and didn’t stop. For the next two weeks I’d ask in a steel-hand-in-velvet-glove kind of way “how’s that Christmas letter coming along?” Sagging shoulders, massive sighs and moaning rose to a new art form. The kids probably wouldn’t have followed through except for their dad. Jim's Greek ancestors knew a thing or two about standing tough and being obeyed. (Which was pretty funny, considering privately he grumbled more than anyone).

The youngest skipped around happily, eager to share what she’d written. With her babysitter’s help, she had dashed off her letter a week before Christmas. My letter was done early too. (Gotta say, just thinking of what I would write to these four people put a smile on my face, through what would normally have been the most stressful days of the year.)

December 24^thbegan the final countdown. Jim (fortified with a smidge of Irish whiskey) and the older two kids were in separate rooms, finishing up a letter they were by now convinced would be conspicuous by its absence.

We sat at the dining table, with white tablecloth, candlelight, the “nice” dishes, the works. In the middle of the table sat a small pile of envelopes. Christmas music played softly. The logs in the fireplace crackled and settled. After dessert we cleared the table, leaving only candles and the envelopes. The youngest, invited to begin, grabbed hers from the pile, took out her letter, and proudly read what she loved about her sister, her brother, her mom, and her dad. Her sister went next, each person listening raptly as we heard nice things about ourselves from the people who knew us best. By the time mom and dad read their letters, smiles had become tears.

The next year it took less convincing to get everyone to write their letters. As the kids grew, and their writing skills and life experiences expanded, they even got a little competitive. Whose letter would be the funniest? The cleverest? Which would make mom cry the hardest? There was the year our outwardly tough-and-capable middle one told us about the struggles she was having with friends at school. The time our youngest told us how powerfully traveling made her appreciate things about home. The year the oldest came home from college having just lost his friend to a hit-and-run driver. When his turn came to read, his voice dissolved. He let us in on a deep pain I think he would have otherwise worked to “control”. How must it have felt to have his whole family stand to wordlessly embrace him?

We don’t get to choose what bad thing in life might befall us. But imagine falling asleep at night knowing you’ve said all the things you “wished you would have said”?

I now have a box of letters going back 14 years. Our daughters could not be closer. I wonder what role those letters have played. Some day I will put all the letters together, in order, a formal chronicle of a family growing up together and figuring things out along the way.

Or maybe I’ll just keep them in the box. There’s plenty room for more.

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