We treat time like water...
February 5, 2006 3:20 AM   Subscribe

A young man's cancer fight. Let me offer my condensed summary of cancer. Maybe they could print it on a little card and distribute it in lieu of the sappy brochures: Congratulations, you have cancer! Your life is about to turn upside down. It causes a lot of stress, and many patients crash and burn horribly. Chemotherapy can save your life, but in the process it'll make you feel like you've been run over by a Hummer. Alternately, your doctors may choose to irradiate you in one of several ways, which is not altogether unlike being shoved into a microwave oven on "high" for a few minutes. Your medications probably won't make you feel better, so do yourself a favor and buy some weed. Get used to needles; you're going to be poked with a lot of them. Be strong, and you might live. Good luck! (John Reeves Hall, 1980-2005)
posted by NorthernSky (31 comments total) 11 users marked this as a favorite
 
(From his intro): One of my main purposes in blogging this is to alarm people into getting suspicious moles checked out by a doctor immediately. If you are even remotely concerned about anything on your skin, please make an appointment with a doctor today. You definitely won't regret it.

(1/7/05): We're all mortal. And yet a lot of us live like we're immortal. Days come and go, and we assume they'll keep on coming. There is no sense of urgency. We treat time like water; so cheap that we can pour it on the ground. Most of us have a vague sense that we'll eventually die, but it's not something we tend to think about often. We assume that we're entitled to our 75 years, which invariably seems like it's a long way off, so we forget about it and go back to our day to day routine.

Just as your life began suddenly, without your knowledge or consent, it will end. Hopefully not for a while, but don't count on it. You could die tomorrow. Yes, you. I hope you won't.


This is a very moving and affecting site, one with more info and detail from a cancer fighter than I've ever seen.
posted by NorthernSky at 3:22 AM on February 5, 2006


I've only read a couple of pages so far, but from what I've seen this is both fascinating and moving. I love his rational/geekish take on the whole process. He seemed smart, generous and thoroughly likeable.

What a shame it is when the good die young.
posted by PeterMcDermott at 3:40 AM on February 5, 2006


The saddest entry is the last one:
The best way to reach me is by email, overcode at gmail dot com. I'm overcode32 on AOL Instant Messenger. I don't use MSN Messenger.
My cell phone is 310-428-3647.

posted by mono blanco at 4:28 AM on February 5, 2006


Your medications probably won't make you feel better, so do yourself a favor and buy some weed.

All cancer experiences are different. What works for one patient may not be applicable to another. Pot certainly has a calming effect for some patients, and is sometimes used to counter nausea, but it's not a universal remedy. I sympathize with Hall's ordeal, but have to remind folks not to self-medicate unless you truly feel you're out of options. It really depends on the person and the circumstances.

I'm not taking the prude's perspective in mentioning this, and have no intention of derailling this thread - treatment can be an even rougher ride when self-administered remedies come into play.

Apart from that, Hall's account is what many suffers have to endure. Cancer blog and the cancer forums are great sites for learning and coping, and can describe options in greater depth.
posted by Smart Dalek at 4:35 AM on February 5, 2006


I was mildly concerned, but didn't think enough of it to go see a doctor.

I had a first stage melanoma removed five years ago. It started much like John's, and I was also mildly concerned. Fortunately, I made an appointment right away and had it removed, saving myself and my family lots of heartache.

It's interesting - when you talk to others who've had melanoma it's often the same - you see something that makes you vaguely uneasy, and that moves you (hopefully) to get it checked out. The lesson here? Follow your gut.

Rest in peace, John.
posted by Flakypastry at 4:47 AM on February 5, 2006


Coincidentally, I have a copy of his book Programming Linux Games sitting on the shelf behind me as I sit here typing this.
posted by Ritchie at 4:57 AM on February 5, 2006


This is good.

.
posted by killdevil at 6:28 AM on February 5, 2006


Thank you NorthernSky for bringing John's survival and death story here. I find tremendous comfort in his blunt, articulate honesty and in all the details of his process, which I can relate to all too well.

I hope it's okay if I share my own recent surviving cancer story in Metafilter with the hope that, like John, what I've learned and the accompanying links might help anybody else. It's a long post and I apologize for that. I'm grateful to be able to have the info available on the web at such a critical time and cancer info is scattered all over cyberspace, so bringing together info here might be practically useful to others. That's my intention.

When I got a late stage cancer diagnosis last June, it was a wallop. Uterine Cancer Stage 3A, Grade 1, plus Fallopian Tube Cancer Stage 1C, Grade 3. Completed surgery and chemo (Taxol and Carboplatin), now facing 3 months of external and internal radiation.

My two closest friends, one I'd known for 18 years, just poofed into thin air, couldn't deal with it. They just couldn't call, visit me or be there in any practical way. I had little savings and faced being destitute, packing up my apartment and dealing with the cancer treatment and having no home. It was overwhelming there for a month. Making my will, a living will, packing, organizing the end of my life without feeling lovingly supported was hard. I have no relatives I'm close with in America, only a divorced sister in England, who has 3 kids to take care of.

One friend, who I didn't have a particularly happy friendship with at that time and met only in the last few years via the internet, not only offered to pay my rent for a few months while I dealt with Everything but offered me to live with her while I went with chemo. Astonishing, generous kindness!!! A saint.

The total hysterectomy- bilateral salpingo-oophorectomy (TAH/BSO) was actually not that bad. I went on a rigorous health food diet pre-surgery and sailed through that particular recovery. My body happily rebounded from the being 'debulked' of the cancerous uterus and fallopian tube. The doctors wouldn't believe my that the Fentanyl they were giving me for pain relief post op was giving me such low blood pressure I was on the brink of death. In spite of repeatedly begging to be taken off of the Fentanyl, over the next 3 days the docs were more concerned I'd complain about pain if they took me off than actually killing me with the stuff, LOL!

I liked my gyn's approach as a doc but he wasn't experienced with surgical oncology and the surgical oncologist he works with was mostly a bystander during the surgery, during which he said some of the Fallopian Tube cancer cells were likely to have been "spilled" because he expected only the Uterine Cancer and didn't expect the Fallopian Tube Cancer to be there.
The surgical oncologist is a prissy, arrogant character, condescending, always in a rush, doesn't listen and doesn't communicate in any thorough way. Not good.

With cancer treatment there is supposed to be a team effort but with this surgical oncologist I feel like I'm on a conveyor belt of money maker-technicians, not working with a team.

The jokey chemo oncologist and his sourpuss wife, who runs his office form a toxic union, a nightmare to work with over the four month stretch of undergoing chemo. I was too blown away with the diagnosis to do Google research before I went into chemo. Big mistake.

Death I can face, I'm Buddhist and have been contemplating the impermanent nature of life for several decades now. It's the struggle to live that is arduous! LOL!

To my astonishment the chemo oncologist knew very little useful about pain management and repeatedly recommended Tylenol Extra Strength for what I can only describe as bone wracking pain from the Taxol/Carboplatin combo I got. Like John, I didn't like the effects of Oxycodone, it's a life sapper and with limited life on the planet it's an unpleasant mental zoning out of life.

The chemo doc had pharmaceutical clichés for nausea, agonizing constipation, nothing to help me with
the hundreds of mouth sores or neuropathy (deadening of the nerves in my hands and feet to the point they felt like blocks of cement and I was incapable of walking or daily chores.) After telling him I hadn't had more than 20 minutes continuous sleep in months, he never told me for three months how to sleep through the night and casually mentioned Tylenol PM one day, which I took at night and it helped enormously. He never told me how to deal with the colds/flu in mid- winter that are typical of chemo-induced neutropenia (lowered immune system).

In abject misery I had to call the husband of a friend of mine, who is a pharmacist and get his wisdom about pain management, what works for which kind of pain and what are the side effects. A nurse friend informed me about using lidocaine patches on my knees for the bone pain and pain patches which cause less nausea but my chemo doc said in a ridiculous blanket statement, "Patches are only for terminal patients."

Then I Googled information and found out that the amino acid L- Glutamine taken 3 times a day between meals, not mixed with protein has an immediate effect on the neuropathy and PREVENTS nerve damage, it left me feeling immediately energized, more healthy, more positive.

Massaging the limb where I received the chemotherapy for the 8 hour infusion really helped heal that limb from loss of sensation.

Smearing my mouth with the liquid in Beta Carotene caps healed the mouth sores overnight.

Breathing hot steam and taking Zicam cured the colds I got without antibiotics, often within hours.

On my own I asked my dentist for surgical masks to wear on the public bus or in commercial buildings and wore cotton gloves to avoid bacterial contamination.

I felt not only abandoned by my oncologists but slammed into danger without them caring. Frankly, I haven't had much good experience with doctors (although I recently found a great, intelligent dentist).

The nerve damage from the Taxol/Carboplatin almost immediately made me lose hearing, taste, smell and I'm careless now in ways that I wasn't so badly before, in typos, forgetting things, just not so clear mentally. I was told the nerve damage in my feet and hands would be lifelong. Fortunately L-Glutamine has healed the nerve
damage dramatically.

Now, with radiation coming up I'm feeling feisty and determined to go into this with eyes wide open, educated and taking action BEFORE and DURING the treatment to handle the side-effects, which I know are basically life endangering, awful and life-long.

People say, "But you are okay now, aren't you?" And if I say, "Well, struggling". They then say, "But you WILL be okay, WON'T YOU?!" Like a demand for me to tell them I will be just fine and end of subject.

Nobody says, "How are you doing?" "How do you feel?" and seems remotely interested. It's like THEY need reassurance, LOL!!!

I guess the c word cuts too close to the mortality bone.

I'm profoundly thankful for Google. There is an excellent support site, called EyesOnThePrize, for women with gyn cancer.


The best info on the web I found about supplements in relation to helping cancer patients are:

Sloan Kettering's site about supplements/herbs/vitamins/alternative
treatment and cancer. It includes the clinical trials associated with the effectiveness of each supplement or herb:

and

Life Extension's information on chemo and radiation.

In NYC, if anybody is here who needs this info, there is an excellent support group called Share, started initially by Gilda Radner for breast cancer but it has now expanded to include other gyn cancers:

SHARE: Self-help for Women with Breast or Ovarian Cancer
Model. 18 sites in NY Metro Area. Founded 1976.
Provides support to women with breast or ovarian cancer,
their families and friends. Support groups led by trained survivors, as well as cutting edge educational forums and wellness programs meet in various locations throughout New York City and North Brunswick, NJ.
WRITE:
SHARE
1501 Broadway, Suite 1720
New York, NY 10036
CALL: 1-866-891-2392
212-382-2111 Breast Hotline
212-719-1204 Ovarian Hotline
212-719-4454 Latina Hotline (in Spanish)

From the little I know, it's a crap shoot who survives cancer for any length of time and who doesn't. I think having cancer is treated something like having leprosy so it's good to share one's info out in the open.

Having any comforting person to share one's feelings and thoughts about this with is very important. I think the first month was the hardest, I feel pretty feisty now and glad there are both online and offline support groups.

I wish I had a Cancer Treatment Center of America in NYC but there isn't. As far as I can see that is the Roll Royce of complete (holistic) treatment for cancer and universally liked from what I've heard. Am doing the best with what I've got. Sloan Kettering, the best hospital in NYC doesn't take my medical insurance, so it's a sort of patchwork medical situation for me but I know I'm doing the usual treatment protocol.

Death comes to us all. I don't feel horribly afraid of death as an idea anyway, LOL! In the meantime I'm working hard on staying alive. :) I am concerned and afraid about the upcoming radiation.

Glad I had an interesting life, very full, lots of adventures. :)
At 52 I don't feel so young any more but willing to face death if that is in my immediate future and ready to struggle for more years, months, days, hours, minutes of life.
posted by nickyskye at 6:41 AM on February 5, 2006 [29 favorites]


Wow - that is quite a comment, nickyskye. Thanks for sharing your travails with us and, more importantly, good luck!
posted by killdevil at 7:30 AM on February 5, 2006


Life changes so damn quickly. Just a month ago I was wondering whether I'd beat my target time in the Long Beach Marathon, not pondering whether I'd be able to recover from a usually-fatal form of cancer. (For what it's worth, I did beat my target time.)

when this is all over, you'll never, ever catch me living as though I'm going to last forever.

Noted.

Nickyskye, thanks for sharing your story. You sound really strong and grounded. I'm sorry to hear that some of your friends weren't there for you -- sometimes people are immobilized by their own sense of inadequacy against the most frightening things. I wish you the best of luck.

Very moving post, NorthernSky. You changed my Sunday thoughts quite a bit.
posted by Miko at 7:41 AM on February 5, 2006


Pot certainly has a calming effect for some patients, and is sometimes used to counter nausea, but it's not a universal remedy. I sympathize with Hall's ordeal, but have to remind folks not to self-medicate unless you truly feel you're out of options. It really depends on the person and the circumstances.

Uh-huh.

That's about as sensible as advising cancer patients to, you know, be careful about drinking water. It is sometimes used to quench thirst, but it's not a universal thirst-quencher. Sometimes you just need a big of juice. So, like, don't self-medicate on that water, folks.

Smoke the pot. If it helps you, great. If it doesn't help you, no harm done.

People have died from overdosing on water. No one has ever died because they ingested too much pot.
posted by five fresh fish at 9:25 AM on February 5, 2006


Nicky Skye, I'm in NYC and went through similar travails about five years ago.

Mercifully, I worked with a fantastic gyn-oncologist and would be happy to give you his name, as well as pass along any other stuff I learned along the way.

My e-mail address is in my profile.

Good luck. And keep telling the truth. You've got more than enough to handle without taking on the burden of other people's comfort.
posted by GrammarMoses at 10:36 AM on February 5, 2006 [2 favorites]


Something finally made me create an account and comment.

Overcode was a close friend of mine and a seriously fine hacker of the highest quality. He was a tinkerer, he was a dreamer and a serious thinker. I really miss the guy. He was a noble and sincere person. He was almost the only reason I enjoyed going anywhere near southern California.

He wrote all sorts of free and open source software. He authored a book on Linux game programming. He was a ham radio hacker, even writing custom software to control his radios from linux.

He was so very thoughtful and compassionate. He was rarely the cynic even in dark times.

He was sharp and became a pilot through serious hard work. John was a really fun guy to go flying with because he had a passion for everything he did. His dedication showed through in everything he did. He was always interested in learning and doing. He was a creator of art (be it programmatic or otherwise) and joy in the lives of people around him. In the time before his death he never stopped being just about the sweetest fun and light hearted guy I've ever met.

I can't find any of his source code online anymore, it doesn't seem that it was hosted with the rest of his wiki/blog on the yak. I could be mistaken, but I believe it was hosted on his home machines. If you can find some of it, I'd like to mirror it. Most recently one of his projects was a userspace ip stack written in C#.

You can read some of his FQAs listed under the name Overcode. His contributions are all over the net.

Rest in peace John.

.
posted by ioerror at 10:50 AM on February 5, 2006 [2 favorites]


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posted by adzm at 11:11 AM on February 5, 2006


Wow, GrammarMoses, thank you. Will write you immediately.

Dear ioerror, glad you spoke up and that John was your inspiration. What a beautiful eulogy for your friend.
posted by nickyskye at 11:39 AM on February 5, 2006


A moment of silence for a good coder.

Nickyskye, thank you for sharing.
posted by dejah420 at 11:42 AM on February 5, 2006


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posted by moonbird at 12:32 PM on February 5, 2006


Nickyskye, I did the same chemo combo 3 years ago (stage 3A ovarian cancer, TAH/BSO), and I also experienced the forgetfulness, carelessness, and most distressingly, the inability to easily access my vocabulary. I would stammer and stutter and be lost for really, really simple words. I'm not fully back to where I was pre-treatment -- I still feel foggy sometimes, and struggle to find words.

Reading John Hall's blog is difficult for me -- I feel panicky and conflicted and more than a little anxious. It's the statements like I'm feeling much better now and This could possibly be the last round that really get me. They just make me really sad.
posted by Felicity Rilke at 12:47 PM on February 5, 2006


My mom was diagnosed with lung cancer last October, and she died from it a few days before Christmas. The doctors didn't think chemo would help due to her age (86) and general poor health. She had quit smoking about 20 years ago. She started having some difficulty breathing in the last year and had to use oxygen at night.

She went into the hospital with fluid in her lungs, which led to the diagnosis. She got out of the hospital shortly before Thanksgiving and moved into a convalescent home. Two weeks later she was back in the hospital and never got out.
posted by mike3k at 4:01 PM on February 5, 2006


I wanted to share his site with others in the hopes that even one person might get that mole looked at, that pesky cough checked, etc.

John and I emailed and got to know each other shortly before his death. As a fellow cancer fighter, and practically a neighbor, we had things in common to commiserate and share: insurance problems, where to find good mexican food, music ("Stream of Consciousness" by Dream Theater lifted him up during chemo, while Nick Drake's "Pink Moon" got me through my last round of hell; we both felt strange when we listened to them outside of that context). Even with everything he was going through, he was supportive and kind to me. He was a really nice guy, very smart, and had a lot of hope about his future. His loss breaks my heart.

I'm not only a patient but I work with cancer patients as well, and knew his chances weren't good; but damn if anyone could pull it off, I knew he could. He was so full of life, and I don't throw that term around lightly.

nickyskye, I wish you the very best in your upcoming treatment. I've been through some of the things you have too, and wish that back then I had the resources we have now (having the internet to find info, advice and support is wonderful). My friends also pulled a disappearing act. My doctor had a less-than-stellar bedside manner. I'm happy to see you finally got good medical advice and are doing better. The one thing that kept me going when I felt like dirt, is to keep looking to that day when you feel better. Everything we go through is part of our unique journey.
posted by NorthernSky at 5:21 PM on February 5, 2006 [1 favorite]


This is unfair of me to ask, but nickyskye and NorthernSky, what can a friend do? I was raised that if it doesn't involve arterial bleeding, start cooking, but one can only stay in the kitchen so long.

I've only had one acquaintance die of cancer, and while we were never close, I still feel vaguely guilty because when I saw her (for the first time in 8 years) a few months before she died, I said nothing, and treated her like everyone else.

Is it best to try to just carry on normally, while perhaps doing a bit more for someone? Is it ok to say, "damn, this is making me uncomfortable, and I don't know what to do"? The later seems to put a burden on someone who probably doesn't need any more burdens.

And thanks for the links and comments. That blog was fascinating, and I hate blogs normally.
posted by QIbHom at 7:14 PM on February 5, 2006


IMO, the best thing a friend can do is NOT disappear. Yes, cancer is awful and a touchy thing to talk about. Friends may not understand totally what's going on, or need to know all the details really. A friend can offer to help, not just in a vague "uh, if you need anything" way, but specific things. "If you need a ride to the doctor's, just call me"; "Would you like to see a movie this weekend?"; "Here are some links to some great resources I found online, if you're interested". Things like that. Be around, be interested, listen to us, but don't treat us with kid gloves - we're still the same person, just facing a new challenge. During my last radiation, a friend came and just sat with me while I dozed. I was no fun to be around, but she brought me groceries and kept me company; that meant the world to me.

We know it's hard, and we appreciate it, a lot. A cancer patient without a strong support system has a much harder go of it.
posted by NorthernSky at 10:31 PM on February 5, 2006 [1 favorite]


Does one have to see a dermatologist about suspicious 'moles'? My partner and I both have lots of bumps. It's difficult to know which are 'suspicious'. He's fair w/moles, I have 'dermato fibromas', but otherwise, I'm a darker shade of pale.

The blogger is so right about how easy it is to just sigh and do nothing. For myself, I have a fatalistic view. I don't care too much about dying, except (big exception!) my partner would be left all alone. My partner's view is one of dislike for medicine in general.
posted by Goofyy at 5:17 AM on February 6, 2006


What NorthernSky said. If there is something specific you can think of to do for your friend, offer to do it, and then actually do it.

Also, in my experience, if you can manage to spend time with the person, rather than just calling him/her on the phone, that's a real comfort. Chatting on the phone when you feel fuzzy and nauseated takes effort; being able to just hold someone's hand and be with them quietly means a lot.

During my "cancer experience" (ack), I watched about half a dozen close friends just melt away into the crowd. Fortunately, several people I hadn't been that close to stepped up and proved their true mettle.

Do realize that sometimes the last thing a patient wants to talk about is cancer, chemo, progress or lack thereof, etc. Plenty of times I wanted to talk about books, movies, whatever - that can be very restful. (Listening to music together is nice too.) As long as it doesn't seem like you're deliberately avoiding the topic of cancer (heh), feel free to introduce other subjects into the conversation.

God, cancer just sucks.
posted by GrammarMoses at 7:59 AM on February 6, 2006


Cancer just sucks, but I don't think God should be blamed.

Rather, let's blame a couple of more rational things:

A) The inutterably stupid way we treat our environment. We are all saturated with man-made chemicals, many of which we know fully well are not compatible with health.

B) Our ability to cure so much of what ails us, which pretty much means we're gonna die of that which we can't cure (cancer) instead of that which we can (most everything else.)

Now I think we're probably all cool with blaming B, 'cause it's a good thing we can cure so much. Iffen we could get our shit together about dealing with A we'd probably become nigh immortal...
posted by five fresh fish at 10:08 AM on February 6, 2006


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posted by hardshoes at 11:11 AM on February 6, 2006


A couple of years ago I was a consumer health librarian, giving health information to the general public. I dealt with people having a tough time all the time (as well as people who were upset, confused, demanding, blindsided with bad news, sleepy, etc. as ill people/family of ill people will often be).

The moment I remember most strongly was when a young woman (maybe early twenties) came in, obviously in the last stages of cancer, thin, bald, stooped, towing an IV drip cart, but smiling and personable. She walked up to my desk with a friend and asked me almost casually, "Do you have any books about dealing with approaching death? Not for me, but my friend is having trouble." I paused a moment to think of what resources the library had, and during that pause, suddenly, the friend burst into tears.

It is very hard to know what to do, as a friend of a person who is seriously ill. Besides not wanting to burden them with your own discomfort/worries, you want to help but don't always know what would truly help them, you don't want to make them feel like an invalid, and you are dealing with your own feelings about possibly losing someone who's very dear to you. It causes a big muddle of worry, guilt, fear, and confusion.

Some books I recommend:

Fullbright, Colleen Dolan: Cancer: How friends can help (actually I haven't looked at this, too new, but Amazon reviews are good)
Rose, Susannah: 100 Questions and Answers about caring for family or friends with cancer (the 100 Q&A series is quite reliable overall)
Harwell, Amy and Kristine Tomasik: When your friend gets cancer: how you can help (from a Christian perspective)

These are more recent books; there are others that are older and no longer in print, though excellent. There are also more specific books aimed at the caregiver of a person with a terminal illness, strategies for organizing a support circle for a person with a terminal illness, etc. And there are many, many books on dealing with the death of a friend: from several religious perspectives, pre- and post-death, aimed at different age groups, etc.
posted by gillyflower at 12:05 PM on February 6, 2006 [2 favorites]


Thanks, gang. Don't go away, try to find something specific to do. It's a start. I hope I don't need to figure the rest of it out.
posted by QIbHom at 7:06 PM on February 6, 2006


What an honor and nice surprise to see my post listed in the MetaFilet sideblog index.

Miko and dejah420 thank you.
five fresh fish thank you for your outspoken opinion, I happen to agree with you. mike3k, so sorry about your mom.

Thank you so much again GrammarMoses for the reference and for researching if that doctor accepts my medical insurance. You are wonderful. How are you doing these days in your survival process?

Dear NorthernSky, so you are a survivor too. Congratulations. I'm sorry that you had/have insurance problems, that would make getting treatment hard, on top of all the stress of just having cancer. How are you managing now?

I was told by other survivors that anything enjoyed or taken around a chemo infusion –including music- can become negatively triggering after chemo is over, so if one had orange juice just before having the infusion one might never want to drink orange juice again, almost like a phobia, a deep repugnance.

And you work with cancer patients too? That takes a lot of strength. I really respect you for that. Thank you for your validation about disappearing friends, unempathic docs and for your encouragement to be hopeful, seeing having cancer as part of the journey.

It's moving when you say John was so full of life. In facing death one's vitality almost becomes quantifiable, made more vivid in contrast when life ends. I'm truly sorry you lost your friend. I feel John's legacy, his impact on my life by your sharing his blog here. You sound like a wonderful friend. I'm glad he knew you.

Felicity Rilke (love the origin of your username) congratulations on surviving 3 years! Way to go girl! Woo hoo! So you went through the Taxol and Carboplatin ordeal too. The neuropathy from this particular chemo (every cancer is treated with different chemo drugs that have different side-effects) is way worse than most of the cancer info sites let on.

There is an informative chemotherapy site with a very practical webpage about keeping track of one's entire cancer journey.

Official whitewashing by doctors and medical administrators about the actual pain and side effects that go on in cancer treatment is described in much greater agonizing color by patients who've lived through it.

Like you, I'm also at a loss at times for very simple words. It makes me inclined to try controversial treatments like hyperbaric oxygen, which has been clinically proven to help with both some chemo and radiation damage.

Frankly, some of my word losses are bizarre and leave me feeling like an Oliver Sacks' book character, LOL, like saying "I was just watching a great television carrot, oops, I mean show." Post chemo I'm just not thinking so clearly now and often regret saying something that a few hours later seemed asinine. I feel synaptically impaired.

I'm hoping that Mega-Glutamine helps repair some of this chemo induced nerve damage.

Without hope one lives and dies in despair.
Too much hope leaves one in denial of the reality of death. Surviving cancer requires the abrupt and forceful coming to terms with a personally acceptable balance between hoping and facing death. Death always comes, as we know it will and I imagine, to some extent, that hope is there to the end. Death is always an interruption. That seems to be the nature of life. It is deeply poignant to see in John's blog.

A fellow member in an online cancer support group advised me to stay in the present, not wander in my thoughts too far in the past or future, to seek out the good in each day, however small, and savor it. Since my life was limited, unable to walk or think beyond the pain due to the chemo, I bought birdseed and fed the birds and chipmunks, accepted my rapidly diminishing intelligence and watched online dumb videos.

QIbHom, great question. I never knew what to say to anybody with cancer before either, it was too scary to think about really and I felt lost in knowing what to say, it seemed almost impossible to say the right thing and as if nothing could be adequate in face of the big C. Now I know what I'd like to have heard or hear. It definitely requires some emotional depth from people, which they may not be able to or may be too scared to offer.

I was overwhelmed in the first few weeks and I couldn't absorb well-meaning people's desires to tell me about every single supplement on the market. It was a burden to experience other people wanting me to reassure them that Everything Is Going To Be Alright, when it wasn't.

When I got the cancer diagnosis a neighbor let me cry (wail) in his arms until I didn't need to cry any more. What a relief! Once the tears were out I could find a starting point to deal with the practical details. From others I would have liked responses like: I'm sorry. This must be hard for you. How do you feel today? (and let me have a chance to answer) Is there anything I can practically do to help you? How do you feel about your doctors? Do you want help finding a better doctor? I'd like to come with you to the post op recovery room/your first chemo treatment/pathology report discussion with the doctor so you aren't alone. Have you organized things for your hospital stay? Is there anybody helping you at this time? I'd like to come over and keep you company. I'm going to Google this subject (the cancer, surgery, chemo, radiation, side effects, supplements, what works and what doesn't) and see if there is anything practical I can find for your situation.

I agree with GrammarMoses' suggestions about NOT talking all the time or only about cancer, just talking about fun stuff too with the understanding that if the C subject comes up that's ok.

Silence from old, close friends was devastating.

I keep this small Buddhist booklet about stages of dying/how to be around a dying person next to my Will and Living Will in my apartment and names of people to contact in the event of my death. It's probably a good idea to think about the end of life, just to look at it and to tell anyone who might be there at the end of one's life about Hospice care.

Heavy stuff to think about! LOL!
But that's life.
posted by nickyskye at 10:32 PM on February 6, 2006 [1 favorite]


oy, and I thought I carefully checked that post last night for typos, arrrggg, lol, it should read, of course, "What an honor and nice surprise to see my post listed in the MetaFilter sideblog index."
posted by nickyskye at 5:51 AM on February 7, 2006 [1 favorite]


I used to know a guy who had a black mole near his armpit for around 10 years, while his wife nagged him to get it looked at. It was malignant melanoma, and he was probably the luckiest guy on earth.
Please, if you have something that looks suspicious, just show it to somebody who knows about those things.
posted by unrepentanthippie at 9:51 PM on February 25, 2006


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