Decisions, delusions and befuddlement

You are currently browsing the archive for the Decisions, delusions and befuddlement category.

Remission Perdition – Cancer Returns

Sunday, December 5, 2010 in Cancer and media, Decisions, delusions and befuddlement, Life after Cancer, after cancer, exercise, remission from cancer by admin | 2 comments

My worst fear – cancer returns

I would like to say that I’ve spent the last few months in a stress-free remission, climbing mountains for charity, but anyone who has been through this will know I am lying.  Just because you are in a remission doesn’t mean you are not stressed, exhausted and plain old sick.

I list the stages I went through during my five months of remission.

Reality sucks – first stage

I wondered why I didn’t feel elated.  I should have been over the moon, plotting my next trip to the five star resorts, spend it now! Instead I was doing what I had been doing over the last year or more, that is I was comatose, nauseous, vomiting, bowel problems, the usual. The treatments were finished but the side effects lingered on. I kept telling my body the treatments were over but it wouldn’t listen.  I was still seeing my oncologist, Dr Spittle, who kept encouraging me to get out of bed and start moving around before I forgot how to walk.

Escape – second stage

So doing my best to feel more positive, I signed up for a Pilates weekend at an expensive health resort.  I curmudgeoned the weekend away, and found it difficult to get to Pilates, much less do exercises.  I had a list of what I couldn’t do which included all the activities on offer, like hiking and aerobics, and I hated the food, and I growled at the other guests. My optimistic phase had become my over-optimistic phase and when I got home I went back to bed to rest up from my weekend.

Smart ass – third stage

I spend hours looking for the next cure and futilely try to keep one step ahead of my oncologist.  This stage began thirteen years ago when my first cancer sprouted and will continue until my last breath, with diminishing returns and diminishing enthusiasm. I won’t go into the details of my findings but let’s just say the new cancer doesn’t conform to anything I came up with in my research, so trips to Japan and the leading medical centers of the world are cancelled.  I should have gone when I had the chance, now I couldn’t do the traveling. I need to go to the website ‘cancer to order’ and ask them to send cancer that allows for extensive travel.

Getting it before it gets you – fourth stage

After five months I thought it was time to have fun.  My friend in Miami had air miles and a week off. This happened at the same time as the white truffle festival in Alba. It would be great to celebrate a weekend of gourmet food after months of nausea. It was a wonderful week for me, but I was tired and not my usual adventurous self. I had a feeling cancer was looming.

The final charge – fifth stage

I decided to make a huge effort to be a superwoman. I kept up acupuncture, went to Pilates four times a week, and signed up at a place called Bowskill Clinic for physical therapy and serious training. Everything was going well for about a month, which is a long time in stage 4 cancer remission.

Maybe I was stretching my luck,  signing up for 20 sessions at Pilates.  Just as I was about to ask for heavier weights so I could have a macho moment, my right arm folded.  It couldn’t lift an ounce.  My teacher looked at me with pity.  I looked at my arm in amazement.  What happened?

By the time I got home I was in severe pain.  I figured I had broken my arm; but how?

This was the first time I had a physical problem that I didn’t immediately think was to do with cancer.  I took every medication I could find in my apartment and nothing worked, not even the codeine pills I had left over from one of my cancer operations.  Not even my Adval smuggled from USA.

Sixth stage – no, seventh – Cancer returns

How did I know cancer was back?  Even after months of remission and seeing my oncologist every week. Dr Spittle has the manner of a psychoanalyst. She always greets me brightly, dressed as if she was greeting a great dignity rather than a woebegone patient; ‘Dr Walker’ she says, beckoning me into her consulting room.  She felt the lump on my throat and immediately concluded that I needed a biopsy and of course her instinct was right.  The tests showed cancer.

I’m writing this waiting to go into see Dr Spittle and start my treatment. I’ve had my Pet/CT scan and MRI. Cancer is back with a vengeance.  Good news it hasn’t gone to my vital organs; bad news the cancer can now be seen: lumps on my neck, bumps on my chest and a lifeless right arm. Cancer ought to at least stay out of sight.

I can think of many things to write about and will try to keep on to ‘restore sanity’.  This feels like a sequel;  ’The Revenge of the Cell”.  There will be more to come.

Tags: , , , , , , , ,

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.

Tags: , , , ,

Life after cancer, Part 1: the real world

Sunday, July 18, 2010 in Decisions, delusions and befuddlement, Life after Cancer by admin | 2 comments

Cancer has run out of steam and now it is time to get back on track.  I have some doubts about recovery:  the scans are good news, the blood tests are great; but it is optimistic to suggest that all is forgiven.  Strange symptoms linger while life goes on.

Why am I so tired?  On the day you get positive cancer results you would think you would get your energy back.  No, I’m still as exhausted the month after the ‘good news’ as I was the month before.  The only difference is that most people don’t expect that I will be tired, and want to celebrate when all I want is to sleep.

Why does hair grow back in unwanted places first? Facial hair first, hair on the legs all in place, hair on head reappearing very very slowly.

Does your body remember the nausea?  It seems to visit from time to time like an old friend who doesn’t want to be forgotten.

Why didn’t the treatment get rid of all the medical problems I had before cancer?  Still have asthma, incontinence, attacks of diarrhoea, muscle pains, arthritis, migraines.  You’d think that those ‘state of the art’ drugs would kill everything.

Is every physical symptom due to cancer? Is every bump malignant? If no, what do you do then? Worry.

If you are cancer free why are you always in an oncologist’s office? Checking, checking, checking; it’s enough to make you ill.

If you have been bedridden or hospitalized for a long time and are lucky enough to have NHS or private health insurance, why aren’t you rich?  It remains a mystery to me.  Maybe you were so out of it on the chemo cocktail that you just dropped your money on the street.  Check bank account:  assuming death was imminent, perhaps you gave all your money to your children (the King Lear symptom).

AND as long as you could use your computer you might have shopped on the Internet while comatose.

Why do you still have to pay taxes?  After a few years of cancer you’d think you might be given a tax rebate.  No, instead you are faced with new tax laws that slipped in while you were too sick to care and it’s back to form filling and accountants.

And the will you wrote when you were foggy from chemo, and thought the end was coming…  now review it in the light of your maybe being around for a while. (Did I mean that??)

Did you give yourself a well-deserved break from the dentist because nurses were prodding you enough?  It seems unfair to have to go back.

Since your treatment has been successful you may feel a wave of generosity and would like to support a cancer charity.  Would you like to run a marathon, jump on a trampoline, walk across a desert, climb Kilimanjaro? NO! Well, maybe someone will sponsor you for getting up in the morning and crawling to the bathroom.

While you have been using a limited comfy wardrobe of loose clothes your dress up clothes have been hanging in the closet. They must be ready to wear now that you are ‘well’.  Not likely, your body has no doubt changed due to surgery or weight gain (usually a matter of gaining not losing) The diseases that make you lose weight are never part of an overweight person’s repertoire. And even if they still fit, the clothes in the wardrobe have gone out of style.

So here I am, in remission but left with all the health problems I had before.  Financial problems are still the same. Taxes still have to be paid, and life goes on much the same as before cancer, but I am left with a chemo brain and residual exhaustion to tackle it.  It isn’t fair, but whoever said life was fair?

Tags: , , , , , ,

Did Crazy wisdom finish off my cancer?

Friday, July 2, 2010 in Decisions, delusions and befuddlement, cancer prognosis by admin | 1 comment

.

Whatever has worked, whether hocus pocus or not, my cancer has been put into a deep, hypnotic sleep – please don’t wake it.

A month ago I had an MRI scan to find out if the treatment for stage 4 breast cancer had worked.  After operations, radiation and chemo, the scan showed that a lot of my cancer had gone, but there remained a few cancer cells which were most likely inoperable and difficult to radiate because they were embedded in nerve tissue.

After fifteen years with cancers coming and going, I knew the rubric.  With the prospect of ‘no more treatment’, it was time to check on my will and make funeral arrangements.  I visited my surgeon and tried to cheer up my oncologist and friends, but in my heart I thought I knew.  Further surgery was unlikely and radiation with a cyber knife, which was mentioned, was one new fangled invention too many.

My oncologist and surgeon recommended a CT/PET scan. Too optimistic, I thought. In my negative frame of mind I thought only fleetingly about the effects of radiation from the scan (see last blog) – I wasn’t going to be around anyway.

But the hocus pocus machine must have magically transformed my negative energy into positive. My oncologist was disbelieving when she called to say my cancer was inactive.  I ran to her office in fear she might have got it wrong.  Neither she nor I believe in magic, and she methodically checked with the technicians and pathologist to see if the machine was broken on the day or if the pathologist who had read the scan had forgot his glasses.  All confirmed to her that the cancer was inactive.  I think we were both in shock.

I began to tell my friends and they all asked, ‘Why? What had happened between the MRI and the PET/CT scan?’  The answer is, I have no idea.

Please cast your vote.  You can put money on any or all of the following:

My negative attitude

During that time I was reading a book called ‘Final Exit’, and listening on line to lectures on death from the philosophy department at Yale University.  Being negative always puts me in a good mood.

Moxibustion

Who cares if it works or not?   It is such a great word.

I started this around the time of the first scan.   Walking up the circular stairs of the Kite clinic on New Bond Street felt like going to a high price cosmetic surgery clinic.  Gerard Kite uses a form of acupuncture in which magic moxi is made into heated candles and are placed one at a time on various acupuncture points.  After the moxi is in place, a few needles follow, which penetrate the skin and feel a bit painful for a second or two.  The whole thing takes only a few minutes but it did give me energy and who knows what else.  I had about ten sessions between scans. I had put off going because the expense seemed too high but I decided the hell with the money, I wasn’t going to take it with me.  I think it had done me a world of good.

The magic substance – Orgonite

My friend Martin Sexton, an artist, put Orgonite all over my bedroom.  He takes this very seriously.  It is a substance devised by Wilhelm Reich, a psychiatrist who worked with Freud until he went off in his own mad direction.  He believed that he could harness the energy of the orgasm in a material made of resin, white quartz, rose quartz, and aluminum.  He made cylindrical tablets that were full of magic properties.

Martin’s tablets were made in the shape of Silbury Hill. He bathed the tablets in Chalice Well at Glastonbury, in both the red spring and the white spring;  shallow buried and retrieved them on Glastonbury Tor; placed them at the other sacred places of Wyvern Hill, Chalice Hill, Gog Magog Oaks, and Stonehenge, and then finally placed them on the erect phallus of the Cerne Abbas Giant.

They have sat on the windowsill near my bed during the time between scans and who knows?

The summer solstice

The PET scan did happen on the day of the solstice; maybe the druids intervened?

Prayers for the atheist

I do appreciate it when friends and people I don’t even know send me prayers.  I do have a close friend in Australia who is a minister for the Church of England. He said he wanted to pray for me but he needed me to be specific.  What exactly did I want him to pray for?  I hope I said something relevant because I like the idea of being specific.

The shaman – the doctors

To give them their due, the doctors worked hard to get these results.  At times their work seems more on the side of magic than science.  Dr Margaret Spittle, my oncologist for fifteen years, planned my treatment with the aim to get rid of the cancer (a stage 3 solution) rather than watch it grow and take over (stage 4).  She planned the operations, radiation treatments and chemotherapy.  I can’t say that I always had faith or thought positive things about her.  It has been a difficult two years.

The fight with cancer is no doubt not over, but for now,

Ssh, Ssh, the baby is sleeping…

Tags: , , , , , , , ,

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.

Tags: , , , , , , ,

« Older entries § Newer entries »