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Dead as a nit, but home

Tuesday, March 15, 2011 in cancer prognosis, drugs, medical care by admin | 1 comment

My needs were actually very small – morphine, and the edge of my queen-sized bed.  I had a carer telling me I’m going to fall out, but for some reason, even though I sleep alone, I sleep all scrunched up in the corner of it.  And after years of psychoanalysis, I know why – I used to share my bed with10 stuffed animals and a real cat and I’m still accommodating all of them.

I had one more day at outpatients, having radiotherapy, chemotherapy, and an oncology appointment.  We had a review of my case with the radiotherapy nurse, and I found out at that time that neither the chemo nor the radiation had worked.  This is something I still find difficult to believe, but it was confirmed by Dr Spittle.

I lugged home a pile of pills, enough for two months, trying to figure out what it meant not to have any more treatment. Instead of feeling bad that there was nothing more that they could do, I was relieved it was over.  I wouldn’t be prodded and zapped any more. My friends called, hoping that I would take a holistic approach, having now been turned out to pasture by the medical brains; would I like to be reiki’d by a specialist only know to a select few in the world?  Would I like cranial osteopathy, by someone who’s cured all a friend’s family (they all look healthy to me)? Would I like to start a macrobiotic diet?  I bought the carrots, leeks and onions, and thought I’d make some macrobiotic miso soup, but they sat in the refrigerator for a week, which can’t be good for them. I’m not quite up to cooking yet.  As to the rest of it, no one’s touching any bit of me until I’m ready to be touched, which may be never.

The first week passed slowly, with the new drug oxycotton making me sleep all the time.    A look at Youtube told me that I was sharing my drug with the street people.  I’m not sure how I feel about that.

Scarecrow, scarecrow whats that you popping?
A powerful pill they call Oxy Cotton
But it’s so tiny, that it got you dragging
Haven’t you heard big things come in small packages

[from 'Oxy Cotton' by Lil' Wyte]

During the few hours I was awake I was also sharing the news with friends that the chemo and radiation hadn’t worked. This proved hard, as I don’t really know what to say.  I think friends would really like to hear something definite.  But nobody can guess the date of their death, and I’ll hold on to the reins for as long as I can, no doubt.  I’m at the stage where I’d think about refusing to have chemo again, and I’d certainly refuse radiation, which is causing all the problems right now. [I wrote this a month ago, and now radiation is not being offered; chemo decisions are complicated, and difficult, and belong in another blog, not yet written.]

But I was beginning to feel stronger, and the opera in London was looking great – it seemed like a miracle when I found the perfect seats for Parsifal at the ENO.  It lifted my spirits to think I could go out. I believe that it’s good to start out with five hour operas when you’re feeling crappy, and then move down to easier ones later on.

The oxycotton monster followed me to the opera

We had the perfect seats, which were right in front of the wheelchairs, on the aisle, as close to the Ladies room as you can get, and near the sofas for the intermission.  And Martin had the car right there to take me home.  Martin said I fell asleep in the second act, and he woke me up when I snored, but I noticed others around me sleeping as well.  But by the interval at the end of the second act I thought I better demurely go home.

Pity really, as the third act may have been the best, and is certainly the most relevant, since it deals with death and salvation.

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My Hospital Nightmare

Monday, February 28, 2011 in drugs, medical care by admin | 1 comment

Suddenly one night I got very sick.  I was alone in the apartment, and just managed to call a neighbor, who came over immediately.  I put in an emergency call to my oncologist Dr Spittle, but there was no room at the hospital till the next day.  So I had a hallucinogenic evening, just me and my morphine together, and I went to hospital the next morning.

morphine, cannula, penguins - they're all the same to me

The day was the same day as my best friend for over 65 years went to Antarctica, on an anniversary trip with her husband.  The only good thing I could think of, reading her blog, was to realize I was happier in hospital than riding the big waves coming out of Drake’s Passage.  I was really sick, being attacked by a bunch of nurses and doctors; they all seemed like penguins to me in my morphine haze. I’ve never known a time when I was angrier, more belligerent, sicker.  I was sure I was going to die.  Angry at everybody who walked and talked and came into my vicinity. Too angry to blog. My friend Martin Sexton put his head in his hands as I berated a nurse for being ten minutes late with pain control medication, the she-devil in me surprised him.

Elizabeth Kübler-Ross may have been right about the angry stage which takes over right before you die.

From Wikipedia:

“Her extensive work with the dying led to the book On Death and Dying in 1969. In this work she proposed the now famous Five Stages of Grief as a pattern of adjustment. These five stages of grief are denial, anger, bargaining, depression, and acceptance. In general, individuals experience most of these stages, though in no defined sequence, after being faced with the reality of their impending death.”

On the second day of my gaol sentence, I was deeply into the anger stage when a tall fit physio appeared, waiting to take me on a hike.  Behind him came a speech therapist.  I took one look at them; I wasn’t interested and sent them away.  That took all my strength – I had to sleep for the rest of the day.

Beyond the usual cancer symptoms – nausea, diarrhoea, and horrible pain – I had also developed pneumonia.  They gave me courses of antibiotics, though I was amazed that I had pneumonia, because I never coughed.  And I was so tired, too tired to read, too tired to talk, too tired to watch television.  This lasted about 5 days.

The nurse would come in to change my cannula (the tube which delivered the antibiotics intravenously) and I would keep mixing it up, and calling it a catheter. She would look at me strangely and wonder why I would want my catheter changed, when it was working very nicely, taking care of things the other end. Finally I would end up going through the words – catheter, canister, canola, cannoli – and never coming up with the right word, cannula.  So I was the hospital idiot, and I would end up getting three or four pricks on my thin veins as I looked for the right word.

Finally my very black knight in white armor came charging in and noticed I had been crying, which is something I never do.  But in this instance he was right, I had totally given up all hope.  The only thing that made me smile was to think of my friend Susan paddling among the penguin dung, instead of the dung I was dealing with – and believe me after six days of nothing I produced some amazing dung.  It looked like something from open sewers I remember from my travels.

Back in the pristine hospital bed, I was accosted with a bevy of pills. I gave up looking up each additional pill on the internet to find out side effects.  What did it matter anyway? I was on my way out.  I did sneak a look at one of the constipation pills and in my drug haze I think it said for terminal cancer.  When the message is depressing go off line.

Morphine and oxycottin carry constipation as their outstanding side effect. I want to say a word about the pills they give you to counteract and how they don’t work. I guess if you spend your life in clubs not using the bathroom is a big advantage.  Personally the ineffectiveness of these drugs scares me.  I find prunes, cabbage, licorice help; but sometimes even I lose my faith completely. A quick trip to a developing country might do it, all I can say is the western world is not up to the task.  Where is Delhi belly when you need it?

But by now I had reached the bargaining stage: I would take any pill whatever in order to feel better and get out of hospital.  The food suddenly became awful, after I had put up with it for years – even liked it –  I think it was just my perception.

After 10 days I could deny my impending death enough to get out of hospital.  I even let the tall fit physio take me ‘round the hallways so I could get good marks.  By the time my friend Jane Hamlyn appeared at the hospital, and organized carers for me at home, I was ready to accept any advice.

After going through anger, and compromise, I was able to contemplate acceptance, so home I went.

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Remission may mean submission

Tuesday, November 16, 2010 in Life after Cancer, after cancer, medical care, remission from cancer by admin | Add a comment...

It is cancer remission time and any intelligent person would be happy to have a break from the big ‘C’.  But here I am, planning my next attack on the enemy. That is not as dumb as it sounds because, for me, there has always been a next time, and I want to know where I can find the ‘cutting edge’ treatment and sign my name on the dotted line.

I showed up full of hope and wonder at an all day conference on The Future of Medicine put on by Intelligence Squared in London.   Prof. Bleddyn Jones spoke about curing cancer, not just getting rid of symptoms. Sounded good to me. With Stage 4 cancer no one ever uses the ‘c’ word ‘cure’ in conjunction with the other ‘c’ word ‘cancer’.   His first slide was a picture of the earliest airplane, an image that resonated with how I feel about radiation and chemo, which seem brutal and archaic treatments. Then he showed some photos of the latest supersonic jets and asked “Which would you rather fly in, the oldest technology or the newest?” I think of myself as super cool and cutting edge even though I’m 71 so I immediately chose to get on board the supersonic jet.

He went on to talk about particle therapy, a new form of radiation which targets the exact cancer cell and doesn’t involve any surrounding tissues. As he said, “It lands the dose on a dime with little, if any, collateral damage.”  I’m all right with that as long the targeting is not done by the twenty-somethings in Texas who have gained their experience aiming ‘drones’ at Pakistan and Afghanistan.  My faith was fading.

He went on to say that this treatment is fabulous for prostate cancer and as you can imagine the elderly male audience leaned forward and patted their checkbooks. Apparently everyone looking for research funds says that their treatment cures prostate cancer:  that’s where the money is since most men over 80 have prostate problems.

OK, what is the down side?  From my foggy understanding, the treatment involves walking into a cavernous room where the machine itself takes up acres of floor space;  they cost several fortunes to build).  There are ten machines in the US and a few in Japan and Germany.  Even if more machines were ordered, they would take years to build, by which time someone might have found another, better machine for the end of the 21st Century.

I spoke to my oncologist who was less than enthusiastic.  I wanted to sign up immediately and go on the waiting list for Japan. Who knows?  The day my name came up might be the day my cancer wakes up.

The next stop was the TED convention: this is the place to find all fascinating inventions and innovative ideas.

If you can pronounce the word Antiangiogenic, you are eligible for treatment.  Cutting it down to bare essentials, there are many blood vessels around the breast that feed cancer cells, and you need to stop the blood supply to stop feeding the cancer. These treatments aim at targeting the specific blood cells.  I was treated with an antiangiogenic therapy called ‘Avastin’ and was now in remission,  so I listened intently.  His question was  “…what we can be adding to our diet that would inhibit Angiogenisis?’

Can we eat to starve cancer? Wow, good words. I know how to eat. Now I can eat lots of fun food and stop the cancer.

Any list with chocolate on it is good with me. Don’t know about sea cucumbers.  Aren’t they the things you squish in the ocean?  The next day I topped my cereal with a mountain of berries.  My health insurance paid for my Avastin but not for my berry supply.  After a few weeks I forgot about this and went back to my normal diet.  Oprah seems to believe this diet will ‘cure’ cancer, but she is more positive then the researchers.

Then a friend turned me on to Pingyangmycin.  It fits nicely into my travel fantasies since it is a cure only available in China, which is fine by me. “I think it’s good that Chinese scientists are working on cancer drugs, because if my kid got cancer, I wouldn’t look at the label that says ‘made in China’” as Bill Gates said.

I don’t think it even is used on breast cancer patients but what the hell, China beckons and I like the name.  It sounds like a new ‘dim sum..’

Despite all the mad scientists and all their ideas, my conclusion is that I have to submit. Stage 4 breast cancer and I will have to fight it out with the old-fashioned treatments: chemotherapy and radiation. My oncologist, Dr Margaret Spittle, has done heroic work so far.  I know she would like to have more tricks up her sleeve but it is not to be.  That is why breast cancer needs tons more innovative research.

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Dead or alive; ask the FDA???

Monday, October 4, 2010 in Cancer and media, Decisions, delusions and befuddlement, after cancer, cancer prognosis, medical care, remission from cancer by admin | 1 comment

I woke up one morning and discovered via the leading newspapers that the FDA is withdrawing the cancer drug Avastin, the main focus of my cancer treatment.  It seems that women with stage 1V breast cancer do not live long after taking the drug and may die of its side effects.  Oh my god I thought, I must be dead.

I went immediately to my calendar to count the months between my last treatment and now.  I had finished treatment with Avastin and parataxal on the fifteenth of April and now it was five months later, I had just passed my live by date.  The news reported that I had six more months to live at best.  I’ve had Avastin and Paclitaxel together and according to the report my last few months have been easier but my life span has not been increased.

I must be having terrible side effects … or so it said in the news.  In actual fact, I feel better all the time, and most of my lasting side effects come from surgeries.  Although I still have a tiny bit of cancer, it is inactive.  Embarrassed by not living up to the newspaper statistics, I didn’t know where to put myself: was I dead, dying, or suffering silent but deathly side effects?

The FDA decided against Avestin as a treatment for Stage 1V breast cancer because it does not extend your life expectancy or add to your quality of life.  OK I understand that – officially I am dead or soon to be dead, and my improved life quality is imaginary.

So what about the 17,000 American women who are being treated at this very moment with Avastin and have just heard the news that it was being withdrawn?  The reason for this was supposedly nothing to do with the cost or politics.  Right, we all believe that, don’t we?

The last people we should feel sorry for are Roche, the drug company who lost a significant amount of money off their shares. But the point is that according to our congressmen their decisions have nothing to do with the cost of the drug, only its efficiency.  PLEASE  – the media has made sure that everyone knows that Avastin is expensive;  Congress would have to be idiots to disregard this information.  But of course politics doesn’t come in to it.  OH NO?

When have I ever asked the government of the USA (where I was born) or the UK (where I now live) what drug I should take?  I get led all over the planet by media proposing cancer cures but the government now wants to have its say. I think if my medical treatment is left to this cumbersome bureaucracy I should take an overdose and be done with it. Reading the scope of responsibility for the Federal Drug Administration described in wikipedia is enough to make you shudder.

The argument pro the FDA decision to withdraw the drug says that patients (women) are desperate to do anything to save them from dying from breast cancer.  They would even have the government pay – or self pay – for treatment that extends life for a couple of months.  OH MY we are naughty, naughty women.

Since American women may now have to pay for their own Avastin, they will have to ask themselves if a few months of life is worth it.  I think about how much my illness has cost, and I wonder.  It is a horrible question to have to ask yourself, and it is a question only answered in TV – Hollywood fiction land.  ‘She was alive to see her daughter married.’   Whether you should take the drug or not is as difficult to answer as ‘What is life?’ or ‘What happens when we die?’.  All the medical ethics courses in the world can’t answer that question for us, nor can a government committee.

Just as I was made certain that death was inevitable; and then, guess what?

Reuters:  WASHINGTON – The U.S. Food and Drug Administration Friday (Sept 17) delayed a decision involving the use of Roche Holding AG (RHHBY, ROG.VX)’s top-selling cancer drug Avastin in advanced breast cancer.

Roche’s Genentech unit, which sells Avastin in the U.S., said the drug’s review was extended by three months to Dec. 17. The company said it submitted additional information to the agency, but wouldn’t provide details.  The FDA usually follows the advice of its panels of nonmedical experts, but isn’t required to do so.

Since the July panel decision, the FDA has been bombarded with letters and petitions from women, some congressional lawmakers, and groups such as Susan G. Komen for the Cure and the Ovarian Cancer National Alliance. In a recent letter to the FDA, the cancer groups urged the agency to allow use of Avastin for breast cancer because the drug has been shown to work well in some patients.

OK I get it, I may not be dead yet.  I have got to the point where I am uncomfortable in purgatory.  PLEASE let them make up their minds.  Thank goodness my oncologist the renowned Dr Margaret Spittle doesn’t have to consult a committee every time she makes a decision about my care.

Meanwhile, let’s consider the financial aspect.

The Avastin (which no doubt put my cancer on hold) was according to the FDA a waste of money.

Readers of my blog, Cancer Curmudgeon, know I fantasize about going around the world on a jet plane.  It only takes a month and without any drugs at all I might have still lived that month. Avastin is probably at least a contributing reason I am still alive and my insurance company wisely covered this medication; but they will not cover the next part of my plan, the travelling.

Darn! I could have saved someone some money.

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Doing the cancer-wait-wait … and more wait

Monday, June 21, 2010 in Decisions, delusions and befuddlement, Uncategorized, cancer prognosis, medical care by admin | Add a comment...

Everyone talks about the traumas of the cancer treatment itself, but let’s take a few minutes to think about the trauma of waiting… think World Cup results being postponed for a week after you have watched a game under tension; think having to wait six months for a letter saying you have passed or failed your driving test; think waiting for a kettle to boil; and then you will understand the last few weeks of what is known as my life with the c. word.

I have done the rounds, the surgery, the radiation and chemo. Yet the MRI has shown the cancer cells march on fiercely holding on to a few centimeters of my body’s territory.  Their tenacious nerve fibers are buried somewhere in my chest and under my arm.  Just a little over one centimeter across,  the size of a healthy leech, they no doubt learned their methods in the primeval rain forests where leeches and cancer cells must have marched together in a war against a stone age population.  Perhaps the cancer cells survived by burying themselves deep in bodies, while the leeches hung on to the skins of their victims.  If only we could burn the cancer cells off like we can leeches.

Off track again, the present wait is about doctors wondering whether any further treatment is possible.  Can the cancer cells be dislodged from the nerves by surgery without causing a huge amount of damage, or could a cyber knife deftly radiate just the cancer cells.  In the last two years (the length of this last bout) I have mounted an attack against cancer with state of the art treatment. It is difficult to imagine a world where there is no more treatment available.  It feels like the troops are pulling out of the cancer war leaving the native (me) at huge risk.

I wait it out. Two more days until the PET scam (scan/scam. Freudian slip).  Just to remind ourselves, a PET scan is a radioactive examination where  a strange potion is injected and you can’t go near children for a few days.  I am slightly freaked out by the fact that my wait is blamed on the intergalactic machine, which is broken, and I am convinced that I will be the patient testing the repair.  You know the feeling, when you drive your car away from the repair shop only to turn around and drive it back when the strange noise recurs.  My worst thought is that it will develop a radiation leak.  I had all these paranoid worries when I went to sleep last night only to wake up this morning to read,  in an online article in the New York Times ['Americans get Most Medical Radiation in the World']:

“… Too much radiation raises the risk of cancer. That risk is growing because people in everyday situations are getting imaging tests done far too often.  [...]

Questions to ask about radiation scans:

–Is it truly needed? How will it change my care?

–Have you or another doctor done this test on me before?

–Are there alternatives like ultrasound or MRI?

–How many scans will be done? Could one or two be enough?

–Will the dose be adjusted for my gender, age and size? Will lead shields be used to keep radiation away from places it can do harm?

–Do you have a financial stake in the machines that will be used?

–Can I have a copy of the image and information on the dose?

[Dr Fred] Mettler suggests bringing a blank CD or thumb drive with you.

”You should have all of your stuff digitally on something,” he said. ”I keep mine on my laptop.””

I love these questions because two weeks ago when I had my MRI I was bombarded with irrelevant questions like ‘Are you pregnant?’  Now I have questions of my own.  Yes, many doctors have done many tests.  How many are you allowed?  At 70 I’m sure I’ve had too many.  My favorite in the above list is: “Do you have a financial stake in the machine?”  I’ll ask the first technician I see and I bet they say, “my job depends on it.”

I would love to bring a CD with me and get a recording of my examination.  It could record the technicians discussing their social lives or me lying in a tube with Frank Sinatra as background music.  But as to regulating the dose of radiation, I think I’m the last person who should have a say in it.  I barely know how many gallons of petrol I need to fill my car or how many kilos of anything feed four people.

When I finally got to the scan I needed to lie for an hour on an examination bed and wait for the radioactive stuff to go through my body.  I wasn’t allowed to read because engaging my eyes meant I failed the exam.

My ears were attacked by an hour of Frank Sinatra which was particularly irritating because I was trying to visualize myself laying on a sandy beach and drifting off to sleep.

My ‘funny bone’ has developed a cancer of its own.   My sense of humor gets darker and darker.  My friend asked if I could go to a concert in about a month and the response, “If it doesn’t interfere with my funeral” keeps popping into my mind.

Tomorrow the wait will be over.  My voice has come back and my hair is looking a bit better, I have more energy and my friends say that I’m looking well.  I walked out of my flat today and a very serious looking  Indian sikh stopped me and said, “you have a lucky face.  This will be a good month for you.” Moments like this make me love London – and who knows he may be right.

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