Beating Chemo Blues

Having the Chemo blues is one strange sensation. The shock of going through all this treatment is now sinking in. The only way to describe how I feel is to say I’m at the bottom of a very steep hill, and my mind and body are fighting to scramble up. Reaching the top seems easy, but the fear of the not knowing makes the hill much steeper.

  

The 19^th is slowly creeping up and I will get the results on whether the zapping worked. The ‘If’ of cancer treatment is always there lurking it never goes away especially when you have a recurrence. It sort of shrinks the percentages that the breast cancer lottery feeds on. I did try asking those that were zapping me if it had gone, but their lips were firmly sealed. The fear of knowing that they still could dismantle my MX breast is a path I don’t want to walk down.

To switch my brain off from those worries I have I still kept myself busy.

http://www.ealinggazette.co.uk/ealing-news/local-ealing-news/2013/02/26/give-your-body-an-mot-and-help-beat-cancer-64767-32886058/

Book week meant I had another reason to dig the sewing machine out once again. This will be the third costume in 2 months. The receptionist at Sophia’s junior school said I put certain mums to shame. My reply Nah, I just make it look easy because I have the machines sat gathering dust. But the truth is I don’t want to use the excuse of cancer for her not having a costume. I want Sophia to be like every other child, excited about being her favorite book character. 

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What Kind of Doctor Is This?

My phone rang a few weeks ago, the morning of January 26th. It was my brother saying "Mom has cancer in her spine. I'm bringing her to the hospital this afternoon. They're operating Monday."

I threw my stuff in my suitcase, jumped in the car and drove back home from the conference that moments before had seemed so important.

But before I left, I spoke at length with the orthopedist who'd delivered the diagnosis and would be doing the surgery. I called him on his cell phone, which I could do, because he'd given my mother the number (and with assurances I would use it judiciously). It was a Saturday morning. Dr. P. spoke to me for half an hour, answering my zillion questions in a calm, thorough and detailed way-- what you might expect from a family member. Only he wasn't family. In fact I'd only met him once before, five or six years earlier, when mom saw him and got a diagnosis of spinal stenosis, a painful narrowing of the spinal collumn made bearable in her case with injections.

When I got to the hospital, mom was already propped in the bed, a bit dazed, clearly not having fully processed that at 82, she'd be undergoing major surgery and an uncertain prognosis. I looked around the room. I couldn't be sure, but this might have been one of the very rooms my father had stayed in seven years ago, when he'd entered for routine surgery on his neck, and died six months later from complications of an infection.

The next day Dr. P. came into the hospital early to visit my mom. I was calling from home and felt bad that I'd miss a chance to talk to him in person. He said he'd stay and do some work, and wait for me to get there. (This is Sunday morning, remember.) I drove up with my husband. While mom was out getting a test, Dr. P. sat across from us and answered the next zillion questions I'd come up with since we'd last spoken.

Monday at noon, I walked with mom through the pre-op process, and finally let go of her hand as she was wheeled into the OR. The surgery was supposed to take three hours. Six and a half hours later, Dr. P. (who's been in the OR since 7 AM; it was now 6:30 PM), came to my mom's room, where I was awaiting word. He told me things in the OR had gotten tricky. He pulled mom's films up on the computer, showing me the area of tumor he'd cut out. How he'd had to tease the cancer tissue off of the nerves that feed her legs, and allow her to walk. He showed me the metal pins and screws he'd had to use to shore up mom's vertebrae-- because the bone had flaked when he touched it. Mom was now in the ICU, he said, on a ventilator, at least for overnight, because her blood pressure had been funky during the whole procedure. Could I go see her? Yes, he said, I'll walk you there.

So we walked...through the crazy labyrinth of corridors you find in urban hospitals, to the ICU, where Dr. P. went in ahead of me, made sure mom was settled, and then brought me in. He answered a couple more questions. He had to leave town for a few days, he said, but would be guiding Mom's care through his colleagues, and I could text or call him. He left. It was nearly 8 PM.

The days turned into weeks, and mom struggled, but was recovering as well as we could hope (strong Dutch genes). I did text Dr. P. about concerns along the way, several times. From wherever he was, he made things happen, things that needed to happen. 

We had to reschedule mom's follow-up visit with Dr. P., because of a snafu on our end. He texted me a question: What rehab hospital is your mom in? I texted back and got no response.  The next day, I went in to see mom. Guess who came to see me last night? she said. Who? I asked. Dr. P.!, she said. He came last night around 9 o'clock.  Really? I said, did he come to check your incision? I was thinking, how nice...he did the re-check here, saving her the trip. No, she said, he didn't examine me. He came on his way home from the hospital, and just sat on the bed next to me, and held my hand, and asked how I was doing. We just talked, for about half an hour.

That doctor is Dr. Mark Palumbo or Providence, RI. He doesn't wear a superhero costume, and I doubt he can walk on water. But he is a great doctor, and a Superstar human being.

As a patient advocate, I've seen the best and worst medical outcomes. My dad died in the hospital at 76, but my older brother was saved three years ago in that same hospital after surgery for a grim cancer diagnosis. I know mistakes happen in hospitals, and harm occurs, because trying to fix that is the stuff of my work these days. I understand a lot of the harm happens because there are so many hand-offs to a variety of staff, and tasks that providers are juggling, and that perfection isn't attainable. But the biggest asset of a hospital-- the biggest determinant of good care-- is the people who provide it. Doctors like Mark Palumbo, and Mary Ann Fenton (mom's oncologist) and Dr. Tom DiPetrillo (radiation oncologist), and the many, many kind nurses and staffers who've touched my mother's life and helped our family, humble me with their compassion and kindness.

Yes, it's something of a miracle that six weeks after her surgery, mom is in less pain than before, and can actually take a few steps without a walker. She is on track to take us up this month on our Christmas gift to her: her first cruise, along with me and my two daughters. She's hoping to find a bridge game while on board.

What do you-- can you-- say to the people who saved your mother's life?

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Humoring Cancer

These are the everyday sentences that gravitate my way and my replies.  

1.     Your strong

Like most people I’m a brilliant actor.

2.    You look better now than you did last month…

Hmm! I do believe you said that last month. Do I sense a white lie?

3.    You should be taking it easy…

Yes, but I need to breath too

4.    So does this mean you’re done?

Well the oncologist thought I was, but I keep going back because I love her bedside manner.

5.    I like your hat

Yeah I'm auditioning for the new Hovis advert

6.    My Aunt had cancer and died

Sorry to hear about that, but I’m Sarah Mendoza and I'm very much alive.

7.    How do you cope?

I don't... do you?

8.     I don’t know what I would do if someone cut my breasts?

Well I don’t think you’ll have much choice it is that or pushing up the daisies.

9.     I like your attitude

Tell my husband that 

10. I have breast pain what do I do?

Why are you stood here talking to me get to your GP and get it checked?

And I do hear some of these sentences over and over again and my replies remain the same... 

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The Last Zapping..

This past week has had its fair share of issues like when having my heart checked for starting Herceptin. Mr Nice who was doing the imaging thought I had not started my Chemotherapy treatment yet, so the baseline images are of a heart that has had 6 sessions of FEC and 17 zaps of rads. The way Mr Nice was talking I should have had it done well before treatment started. Confusing, well the conversation was for me too, trust me. Anyway I go to have a chat at The Maggie Cancer Center to ease my concerns. And whilst they found this unusual they said it might be because of age and fitness that they have changed procedure on imaging the heart.

Thankfully it is my last day of radiotherapy and people are encouraging me to celebrate, but to have a lay in with the remote without the worry is good enough for me. Personally if I could just leap off this conveyor belt without looking back would be bloody fantastic. And trust me Mr temptation is waving it's flag. 

By and by I still keep myself busy with everything and anything. On my own I went down to Leicester square after a zapping. I wanted to see in person Richard Gere. Crazy yes, but the two movies I love watching are ‘Officer and a Gentleman’ and ‘Pretty Woman’. And adding Richard Gere’s autograph to Sophia's Collection is a must. It was freezing, but worth the distraction of being there.

Then the following day I had a Touch Look Check event I had helped organize, so life goes on ticking.

I and Theresa

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Do You Own Your Cancer?

As I sat in the corridor waiting to receive the 16^th zapping from the radiotherapy machine a familiar face sits beside me. Your daughter is not with you today? I shake my head saying no not today she is at school. The women smiles and continues to talk about how children today can be so demanding, but never think how those demands take their toll. The conversation continues revolving around family and friends and how some drop to the wayside while others become over protective on the cancer journey.

Then I say well I’ve had my cancer for three years now.

The sixty something black Caribbean women turned to me and said, but you don’t have ownership surely? I look at her puzzled. The correct words are, ‘This cancer’ or ‘the cancer’. To say my cancer or your cancer implies you have some sort of control or responsibility for it being there. And personally I think that is utter rubbish no-one has ownership of cancer.

I look at this woman and for once in three years someone actually made sense. She continued it is not your fault that you use the word my so readily because from young you are conditioned to use it, but there are times when certain words have no room within a sentence.

This woman is right we are conditioned to feel responsible, but truthfully that is wrong. She turns to me surely if we are responsible then why all this difficulty in finding a cure? The women never finished the conversation because it was my turn to be zapped, but she is bloody right.

I think the word ownership is something we all should examine with thought. After all we do not have a copyright on cancer. If someone did then we would know this individual. I did not wake up and say well today I’ll have cancer, but this is what this lovely woman is trying to say. There is no room at this Inn because no-one truly has the responsibility for this disease.

The minute we are diagnosed we are dragged along with the pink confetti adding confusion to our heightened emotional state from being diagnosed. From there our tears are swamped and dulled by the lets be strong beating out loud. And the words ‘MY’ and ‘YOUR’ are used as if we have control over cancer. This in turn develops guilt and the feeling of responsibility of even developing this disease.

But who truly has ownership of cancer people?

WELL NOT ME! L

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Luxury Coffee V's Broken Rad's Machine

As I climb on board the central line tube to White City I receive a phone call from the big C hospital. Yet again one of the radiotherapy machines has broken down creating chaos within the department. It is kind of ironic because as the receptionist is explaining the situation I’m reading an article in the Metro highlighting the latest goof within our Bill and Ben government.

Under the headline ‘Cups and robbers’ MP's wanted to recruit four barista’s to serve luxury coffee. These barista's will be paid £20,173 for 39 hours work. Other perks that come with this job include reduced gym membership fees, an interest-free season ticket loan and a child care voucher scheme, as well as the statutory 28 days of holiday a year.

http://metro.co.uk/2013/02/07/house-of-commons-barista-earns-more-than-a-policeman-3398578/

And then I hear the receptionist say they are cancelling my radiotherapy slot for today. I was not a happy bunny receiving this news. It says five weeks of radiotherapy, and I’m having five weeks of radiotherapy. 

When I say I’m ten minutes away the receptionists says she can find me a slot, but it would mean waiting around. It is cancer that does not wait I say to myself unlike this Yorkshire women.

I finished my phone call and I look at the article shaking my head. Since when did the delivery of a luxury coffee take priority over a machine that saves lives? Why can’t MP’s have a self-service centre like on the Chemotherapy wards or Radiotherapy?

A cancer patient can travel to a hospital and still manage to walk down a hallway to pour themselves a not so luxury cuppa on a freezing cold morning. Why can't a MP?

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Pro-active Patients Strikes Back Again!

Two weeks completed of radiotherapy three weeks left, but yet again I have to chase something that should be routinely done. A portacap should be flushed every four weeks as routine and it is now the 4^th February. Yet again the pro-active patient strikes back preventing another cock-up. How did I know it should be flushed well when the damn thing was fitted I asked lots of questions.

I have read in numerous articles recently how patients should be more in touch with their cancer treatment, but to actually remind medical staff at a cancer training hospital you have forgot to book a flush for portacap you fitted is taking the pro-active bit to far. This device now no longer needed for chemo treatment is actually vital for the infusion of my Herceptin which starts in March. What would clinic 6 have done if I had not shown interest and instead waited until they got in touch? What blame the patient or maybe sweep it under the carpet and press the Opps button! Or use the veins that are still throbbing from the damage done from two cycles of FEC75 J!

Well clearly the NHS is over stretched and those that are bothered can’t do diddly squat about reversing the staff shortage. 

In the UK the NHS is being crippled with mismanagement and the government freezing and closure of departments. The constant breakdown of radiotherapy machines is not a priority with Bill and Ben who run our country. No they have canapés and best brandy in Westminster that are a necessity. But when push comes to shove they can always turn to the private sector for treatment when the NHS is finally brought to its knees. Yes I am being slightly sarcastic… and I did not vote the flower pot men in. 

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