cancer prognosis

You are currently browsing the archive for the cancer prognosis category.

The Birthday Party – Part 2

Wednesday, February 16, 2011 in cancer prognosis by admin | Add a comment...

This is me welcoming everyone to my party

As my lovely goddaughter Georgia said, when she was helping me send out invitations to my birthday party, it was unlikely that all 60 plus would come.  But very nearly all did, battling through the snow, to my delight; all ages, from 3 months (Stella’s babe) through to sprightly 80-year-olds.

The chefs at the Royal China Club outdid themselves, piling on the dim sum, and the duck and all its important trimmings (I’m getting hungry just thinking about it, despite my current nausea).  Even my friend, infamous for his strange tastes – he’ll only eat seaweed at Chinese restaurants – was personally accommodated with enough to drown in.

We wrote a seating plan – not me, I was too sick, but Georgia and a friend did, almost entirely at random, because they didn’t know who many people were.  So a lot of shuffling together happened, and friends of mine going back decades met other friends who go back decades but in a separate strand.   They could have been at a masquerade party, because guests only knew a few other guests, and the chances of their being sat together were slim.  It made for some interesting conversations.

Fortunately, my friends are from a broad enough sweep that no one was in danger of running into their enemies or their ex-partners.

But all the young people were sat together, because it’s important to me: this is where friendships of the future are formed, here at Chinese restaurants celebrating an ancient friend’s birthday, rather than the usual, school and uni and the rest.

The most touching part of the evening was a Robert Frost poem recited by the actor and dear friend of mine, Richard Griffiths, who substituted my name for that of Frost’s daughter, Lesley:

The actor Richard Griffiths reciting a Robert Frost poem at my birthday party

The last word of a Blue Bird

As I went out a Crow

In a low voice said, “Oh,

I was looking for you.

How do you do?

I just came to tell you

To tell Margie (will you?)

That her little Bluebird

Wanted me to bring word

That the north wind last night

That made the stars bright

And made ice on the trough

Almost made him cough

His tail feathers off.

He just had to fly!

But he sent her Good-by,

And said to be good,

And wear her red hood,

And look for skunk tracks

In the snow with an ax -

And do everything!

And perhaps in the spring

He would come back and sing.”

Tags: , , , ,

Birthday Party – Part 1

Thursday, February 10, 2011 in cancer prognosis, remission from cancer by admin | Add a comment...

[This was begun December 2010, but not completed or posted because I’ve been too sick, my right hand paralysed, and in much pain.  But having spent 3 weeks out of the last month in hospital, I’m now home and I’m beginning to smell the daisies rather than think of being buried under them (daisies don’t smell, and I’m going to be cremated, so much for reality).]

Snow plays havoc with my birthday plans

It is 6 in the morning on the day of my 72nd birthday party. This is the second annual party I have had since the return of my cancer.

At the first party (held at the same time and place with most of the same people), I had good reason to think that I might not be around for a rematch. Last year I had just gotten over three operations, was very tired and had completely lost my voice. Five months of this year was spent in remission and the rest of the year in treatment for my recurring cancer.

December 2010, party number two, I was taking chemotherapy orally, and had just finished my last session of radiation on that day, a birthday present.

The amazing thing was that I felt better this year.  I had more energy, I could speak; yet the prognosis for my cancer is still terminal.

So it is 6 in the morning and I’m rifling through files and emails trying to find my sense of humor.  I feel seasick, though nowhere does that come up in side effects of oral chemo.  This is what happened yesterday which has led to both the tragic sense of humor loss and this terrible woozy feeling:  my son called to say that his flight from JFK had been cancelled.  I looked up the flight’s status and indeed it had been cancelled. Several hours later I checked again (as mothers and grandmothers do), this time it said in the small print to disregard the prior notice: the flight was not cancelled.

It takes several hours to get to JFK from Long Island so the family (Juno 5, Clara 10, mother and father) had settled into the idea of not coming to London, and made other plans for the day.

My son is writing, producing and directing a low budget independent film, due to start shooting two weeks in to the new year.  Not coming to London gave him two extra pre-production weeks, and he wasted no time.  He was already in New York City looking at locations when the flight was called on again.  I could have shot him rather than the film but never mind.  At that point it was impossible for him to get to JFK in time.

He promised he would bring everyone in February, but I did something I wish I hadn’t done.  I used the ‘C’ word and said I might not be around in February.  I hated myself for doing it, but part of me thinks that way.

This was the bad news: as far as I was concerned, they were the stars of my birthday party, as they had been the year before.  But there was good news too - more on the party in the next blog.

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: , , , ,

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 »