feelings

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Linney with hair and bursting with positive attitude

I’ve just watched the first episode of ‘The big C’ – a blockbuster series run by Showtime about cancer. It’s clearly written by people who’ve never had terminal cancer or they wouldn’t be around to write the script.

If it was meant to be funny I didn’t get the joke. I think Americans are funniest when in British terms they ‘take the piss’ out of trying to be funny.

It’s about a woman, played by US star Laura Linney, who dominates every scene.  It’s in part a beauty and the beast, story.  She is beautiful and her husband is the ugliest, least appealing spouse I’ve ever seen on a series. OK, she threw him out, but she touches him during the program which makes me cringe.  The most believable moment is the description of him pissing on the lawn drunk and playing video games with his friends.

Her son, beast two, is the quintessential spoiled brat who adds to our stereotype of US children.  He thinks it’s funny to pretend to cut off his finger when chopping a carrot.  Since he does little else to help out, it’s unrealistic that he would help out with lunch.

Beast three is her brother who eats from trash cans to save the planet.

In the meantime, a handsome young doctor has diagnosed our star with melanoma.

Just like doctors do (sic) he takes her out to lunch and tells her she is the first patient he has told that has cancer.

OK, this is a little unreal, but it’s Hollywood and we know reality stops at their border.  But it is supposed to be about the humorous side of cancer.  Is this funny?

1.         She tells no one about her cancer.

2.          She refuses treatment

3.         She builds an illegal pool in her backyard. It has to be finished immediately because she will be dead soon.

4.         She begins to tell people exactly what she thinks about them.

5.          Her major reason for refusing chemo is her love of her long hair.

6.          For some reason, she feels inclined to show people her beautiful breast. Perhaps the breast cancer has yet to be revealed.

After 13 years with cancer (on and off) I’ve had those tell no-one moments.  They last a few seconds and then it all blurts out.  I don’t mean to generalize but the chemo day centre is not full of patients with tape over their mouths and the large number of cancer blogs around indicates the opposite of silent victims.

I have a few friends who refused treatment. Most of them did it at a late stage when they’ve simply had enough.  Without being flippant, when you refuse treatment, death follows.  A few slip through – possibly due to a faulty diagnosis – but more die without treatment than with it.  Most of us with children, at whatever stage of life, or however bratty we have become, do not want to die.

Saving your hair is not a primary reason for refusing chemo.  Women are not happy about it but give us a break we are not that narcissistic.  Men are feckless; women self-absorbed; children spoiled brats.  Maybe no treatment is a smart way out.

Telling people off in a sarcastic nasty way is probably not the best card to play when you are first diagnosed.  ‘The Big C’ and Laura Linney will find that they need all the friends they can get, even the fat, flippant ones.

I’m on my way back to London now, without access to ‘The Big C’.  I will miss it, my hour to snigger.

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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?

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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…

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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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Will you be able to choose your own ending?

There is nothing worse then a moral conundrum and this curmudgeon was caught off guard.  A month ago I thought I was going to die.  I was rushed into hospital with what turned out to be a war with antibiotics, not death.  I was exhausted, and could only think of planning a funeral.

Many antibiotics later (it was bacterial infections; nothing to die about), I had a MRI scan.  It showed that the chemo is working against the stage four cancer, and I may be around a while.  But the experience got me tuned in to the arguments in the media about choosing how to die versus having hospital administration committees decide for me.

I agree with the death with dignity approach – the right to choose – but needed the details before I took sides in the debate.

One of the hotly debated points is that you could at the last minute change your mind and decide not to have your life support removed or not to visit Switzerland.  If I’d been a paid up member with a ‘death with dignity’ plan might I have made phone calls, organized and gone to a place where it was legal so I could exercise my rights and carried out my plan?  No way!  I live in London and don’t even have the energy to get out of bed. In fact, being at death’s door, I can’t imagine feeling well enough to get myself to Switzerland (the only place where it’s legal for foreigners).

Like many great ideas, this one might be difficult to orchestrate.  Not so much that I might change my philosophy, but the state of my health might make it impossiible.

How do you die with dignity?

Do you picture a room full of flowers, your favourite music, your loved ones standing by, waiting to hear your last words?  Right now I like the stories of people who go for a final meal and can finally eat whatever they want, but that’s because I’m on a diet.

After witnessing several deaths I’m not sure what works.  My father, who in his 90s passed away at home in his own bed, decided as a last gesture to line up his shoes.  He wearily asked which he should wear to his next meeting. Then he did his exercises.  One, two, three, four… He could barely speak.

A few months ago, I was at a large UK teaching hospital with a friend who had fought cancer and signed his living will.  (The debate in the UK is whether that is enough or whether a committee should decide when have life support removed.)  The morphine, on offer after life support was removed, took about four hours to work.  From the outside looking in, he didn’t seem in pain.

I hate morphine (didn’t mind getting high in the seventies but now I don’t want to ‘space out’.  Why can’t we have a drink or a shot of something in hospital or home and be done with it?

Why can’t we have what we want?

What are the alternatives?  I sent an email to my cousin, Dr Faye Girsh,  who was off to Colorado to speak on ‘the right to die’.  I asked her about alternatives.

Apparenty, I’m eligible for Dignitas, the non-profit organization outside of Zurich that takes foreigners.  After a lengthy interview, clients leave and come back when they are ready to die.

Although I read that it is difficult to find apartments whose owners are willing to have people dying in them regularly.  Who can blame them?

They offer death by medication (details available on Wikipedia) or with a facemask and helium.  The former takes about 25 minutes. I, personally, don’t like masks.  Your family or friends wait outside while Dignitas video the death.  The police then come over and the body is taken for autopsy.  For an extra fee, they can arrange a funeral or cremation and send your family the ashes.

The cost is somewhere around $8000.00 plus air fares.  You need to fill in forms and have interviews.  I’m too tired after last chemo to leave now and at death’s door I doubt that I’ll have the energy.

So where is all this going to end?

The short answer is that like most people I have no idea.  I could get run over by a car; conundrum solved.  I believe that we all should have a choice, if we care to (and I mean that ‘if’).  The UK idea to have a hospital committee decide whether to detach me from life support sounds terrible.  In the UK we call it the ‘nanny state’.  I want my living will honored.  I want as many options as possible even if I’m too sick to take up my choices.

Link for information:

www.FinalExit.org

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