My Cancer: The Waiting Game
| by Sarah Meyer Index Research |  Digg this |  Email this |
Birth Is The Disease; Death Is The Cure.
The language applied to cancer sounds like Obama’s wars in Iraq, Afghanistan and Pakistan. We hear about "battles" - “Fighting the Enemy” and the “War on Cancer.” Constructively discussing the actual process of life and death can often be a no-go zone. Even the word ‘death' is replaced by the awful term, “passing away.”
I am almost 73 now, and I am ready for death. The suffering of peoples on our planet is a burden for me. I have tried for much of my life to be useful, but of course one cannot ‘cure’ this central crux of life itself.
Some people emailed that they were "shocked" at my cancer news. Why is this? Cancer is a big reality in our times. 1 in 3 people die of cancer (UK).
I hope that this essay will be helpful and informative for others. If you would wish to write to me with your own experiences of cancer, or obstruction of your wishes, or treatment, please email me (see About Me above), with subject: "cancer."
1. My Story
2. Other Stories
3. Cancer and Money
4. Conclusions
5. Reference
1. MY STORY
12 July 2009: My physical problems started: pain before, during and after peeing. Accompaning this were labia ulcers and a swollen clitoris. . I saw *my* local NHS GP. I have been a rather difficult patient for the past 10 years, usually refusing medications – and if I do take medicine, eg statins following a stroke, I stop because my body inevitably throws up ugly side effects. On this visit, GP prescribed Clindamycin . Side effects: 5 days later, I had bloody urine. GP went on a holiday. A woman GP then saw me on 19 August and 2 September. I had urine and blood tests: they demonstrated a "defective kidney". This doctor prescribed the same medication, and 5 days later there was again blood in my urine. Blood in urine is not mentioned as one of the side effects of this medicine; perhaps it should be? Q. How many patients complain about side effects and are these complaints taken to the company that made the pills ? I also had severe diarrhoea, which is mentioned in ‘side effects.’ I asked her about booking a trip to Greenland. “Do that,” she said.
14.09. : Saw my GP on his return from holiday. He prescribed oestrogen cream. I wrote a letter saying I was not going to take any medication until my symptoms were properly diagnosed. In any case, I would have refused steroids, no matter what my problem. Steroids mean that the pharmaceutical companies make yet further money by giving medication to treat the side effects of the steroids. A pharmaceutical merry-go round then ensues till death they do part. I believe that pharma companies care shite about peoples' health and a great deal more about the health of their own budgets.
Excellent and educative article:
The Pharmaceutical Industrial Complex: A Deadly Fairy Tale
21.10.09. Dr. Doug Henderson and Dr. Gary Null, Global Research. The [US] is pacified by a blind belief that the drugs being prescribed to them have been proven safe because our government health agencies have our physical health and well-being in their best intentions. This is a lie, an extraordinarily deadly lie. Iatrogenesis, medically induced injury and death, is the number one cause of death in American medicine annually, since only a small percentage of these deaths are actually reported. Each year more Americans die from preventable deaths due to our medical system than all military causalities in the two world wars combined. This is tantamount to medical genocide. One of the major causes of these deaths is the overmedication of Americans in all ages. The constant need for profits has created an environment that allows the pharmaceutical industrial complex to use their enormous financial and political clout to literally make normal life experiences into new diseases ... in order to sell its drugs.
In Herzog's film, The White Diamond,the Airship engineer Dr.Graham Dorrington speaks of pharmaceutical companies being able to use the 'pristine' forest canopy for their medicinal purposes. This, it seems to me, is a very 'western' approach. It would be better for people to go to Guyana and learn from the knowledgeable residents how they use the forest for medicine. This would not rape the canopy for profit.
8 October. I was referred to Lewes Victoria Hospital for a scan. A GP, whom I have never met, rings in pm to give me results. I don't remember him mentioning the word 'cancer.'
12 October. Appt. to speak with with urologist at the Lewes Hospital,. He is from Iraq. I tell him about the Brussels Tribunal war crimes case against 4 presidents and 4 prime ministers. He tells me I have cancer of the bladder. That I should have a biopsy, with an epidural, during which - if the cancer was on the surface of the bladder, they would remove this simultaneously. This doctor said they would not, however, operate on my cancer if it's in my bladder, because of my medical history (stroke 4 years ago, high blood pressure). Thus I hear all about medical stuff and nothing about the actual process of the cancer - which I need to know to make an [ buzz word ] "informed decision."
Spend 2 days on internet researching bladder cancer. NHS surgery phones to make appt. with GP. Will save further questions for this Dr.
14.10 Arrange with Clare for her to have my tiny (and blind) Yorkshire Terrier when the time comes. A positive aspect of knowing one has cancer is the opportunity to clear up house as well as bank arrangements, bills, etc.Clare and Yorkie Nana © Sarah Meyer
Phone Sister Brenda, who had previously given me blood tests and taken care of my garden wounds with much professionalism and care, to ask her for dietary advice for bladder cancer. I had read that green tea, broccoli and garlic were good. She said the diet I had been following, with her earlier advice on high cholesterol, was good. (oily fish, beans; no cheese, butter or full milk / cream. I also take Lechithin. I told her I didn't wish a biopsy, and could she please inform Lewes hospital. She did. Result: flak.
Link Between Alcohol And Cancer Explained: Alcohol Activates Cellular Changes That Make Tumor Cells Spread (27.10.09. ScienceDaily) Anti-Cancer Superfoods: Do They Really Work? 01.11.09. Care 2. Eat: Berries: raspberries, cranberries, blueberries; green tea; garlic, onions, leeks; broccoli and cabbage; tomatoes; revasterol in red wine; soya beans, (NOT Genetically Modified); tofu; tumeric; watercress; spinach. worse alcohol, smoking Curry, new anti-cancer treatment 28.10.09. rebel news. Curry had long been thought to have healing powers in certain cultures; a new study finds that the bright yellow curry spice, turmeric, can also kill off cancer cells. Obesity linked to specific cancers (05.11.09. usa today) See also: Obesity Causes 100,000 US Cancer Cases, Group Says (05.11.09. ABC) Chicken poo in your burger? USDA allows it in cattle feed 06.11.09. Mike Adams, rebel news. There are 14 billion hamburgers consumed each year in the United States alone. The people who eat those burgers, though, have little knowledge of what's actually in them. Current USDA regulations, for example, openly allow beef contaminated with E. coli to be repackaged, cooked and sold as ready-to-eat hamburgers. Dark chocolate prevents wrinkles, skin cancer 08.11.09. press tv. [NB: didn't prevent my wrinkles, but was suggested as part of diet for bladder cancer] |
12.10.09. Ian writes: "if it was me I'd be inclined to dump everything, sell everything, and go live in a coastal town in India. You could teach many things, and spend the rest of the time with the ocean, and opium."
15.10. Letter from consultant at Victoria Hospital. I am copying some of this letter without permission: ... "Sister in outpatients today has brought to my attention the fact that you do not wish to have any intervention for the cancer in your bladder. / I would consider this to be a huge error and potentially masses in bladders can be sorted out with a relatively minor procedure carried out through a telescope. This in itself at best may be curative but even if it isn't at least it allows to have a histological diagnosis of the mass in your bladder to allow further treatment to be planned. ... you may however be suitable for radiotherapy but there is no way of knowing this without you having an endoscopic procedure in the first instance. I would therefore urge you to keep your hospital appointment to have this done ... "
= increase in blood pressure,. Daughter phones during my teary crisis. Says "it is your life and your death and your decision." Great daughter support! Later she says "I was weepy, too, before going to bed." Feel badly at giving her emotional distress.
16.10. My calm restored, and ticking myself off for not remembering "trust the process." I should have known that there would be Mainstream Medical kickback with my decision to die my way.
19.10.Grief. Today I had my Siamese cat put down. She had breast cancer.
My (sick) Siamese cat © Sarah Meyer
20.10. Appointment with GP, with list of questions:
1. Who is my doctor - now 6 choices.? A: I have been treating you the longest, know you the best. But we are all at this surgery part of the NHS.
2. ref: ‘biopsy’ letter from consultant at Lewes hospital. If refuse, which is likely, will St Andrews surgery / health service continue to support me with care options if I say "no"? A: Definitely yes.
3. Can I ring your surgery when feel change of symptoms / need help? A: Yes. Will I be 'struck off' Lewes Hospital? .A: No
4. Blood test hospital 12.10. What did it say?
A: given printed copies of all tests, with explanation. Useful.
5. gyne appt necessary? appt. for 21.10.
A: Yes, go ahead with this.
6. more exrays / scans / urine tests for kidneys? throat / chest exray? A: GP arranges CT scan for 'staging' at Haywards Heath hospital on 21.10.
7. Process of bladder (and other?) cancer. What "stage" cancer do I have 1 - 4? It sounds as if, from consultant’s letter, that it is not possible to establish "stages" without biopsy.
A: will talk about after results in.
8. Radiotherapy? How done? Could have without bladder inspection? (would refuse implant into bladder via urethra); What kind of radiotherapy treatment could I have? What are the likely side effects of this treatment?
A: discuss later.
9, sleep not good (peeing = waking up). may I have some Ibuprofen if pain increases?
A: Yes (gives prescription; free on UK National Health Service if over 60)
10. St. Peters hospice? Macmillan cancer nurse? referral necessary? site says you "have to be referred to the Macmillan nurses by a doctor or nurse who knows you. Talk to your nurse, GP or hospital doctor if you would like to see a Macmillan nurse."
A: speak with Dr. Dyer, St. Peters Hospice.
11. Dignitas a possibility. Can nurse go with me on plane or is that "aiding and abetting"?
A: Probably a private nurse could go with you.
Later in the month, there is a hoo-ha in the media about Dignitas and assisted suicide. Most media do not support a person’s right to decide their own way of death. I decided when made out my will in 2000 that Dignitas would be my path if I did not feel I had any quality of life.
VIDEOS: Should Assisted Suicide be Allowed, Part 1 (10.03.09); and Riz Kahn, Part 2 (09.03.09). Third of doctors act to shorten lives of dying 23.10.09. Sarah Boseley, Guardian. Dignity in Dying said decisions at the end of life should be made by patients wherever possible. Sarah Wootton, its chief executive, said they were concerned by "the ethical fudge which permits the refusal of treatment and terminal sedation, but not assisted dying". Swiss crackdown on 'suicide tourism' could spell end of Dignitas clinic 29.10.09. Times on Line. The plans — in the form of two draft Bills that will be offered for public debate — are likely to set off a rush of patients from Britain and elsewhere in Europe since Switzerland has become the main destination for those seeking assisted suicide. Regulating assisted suicide stirs debate in Switzerland – Feature 29.10.09. earth times. The government wants to tighten the reins around assisted suicide. Organizations that offer the service insist people have the "right to die with dignity," and that those with crippling illnesses or painful fatal diseases should be able to decide when their time has come. / However, a new proposal this week by the Swiss Federal Council - the executive branch of government - would seek to regulate the clinics, in a move also likely to make it harder for foreigners to use the services. 'Right to Die' Under Increased Scrutiny in the U.K. 05.11.09. Delia Lloyd, politics daily. While that legislation [House of Lords backing of appeal] will not allow the creation of Dignitas-style clinics in the U.K., the easing of some legal restrictions around this issue -- particularly for close family members in the case of a terminal illness -- is seen as a victory for the right-to-die movement. / … Europe is giving this whole issue a re-think. The great Canadian euthanasia debate (05.11.09. globe and mail) Scots to back assisted suicide bill (08.11.09. UKPA) |
Phone nurse at Brighton hospital to confirm that I wish to cancel appointment with consultant for a biopsy. I feel okay and calm about this. I wonder if Greenland and Arctic ice in June-July will be possible. We shall see. Perhaps another, bigger adventure awaits me.
21.10 Today, had a gyne inspection by the registrar at Haywards Heath hospital (Sussex). She thought the pain in my urethra / cervix was from pressure in the bladder. She thought, thus, that there was thus no point in oestrogen treatment. Asked me to phone her if start bleeding. At 4PM, CT scan on back, stomach and chest, including lymph glands.
22.10 . 1.30 am: wake as usual to pee 2ce; can't get back to sleep. Coughed up bloody sputum ... enough to make me anxious and query its cause ... become neurotic about this by 4.30, because of two previous haemorrhages. Ring night doctor, who asks questions. Stop being neurotic and start reading emails and passing on political information.
Secretary at St. Peter's and St. James Hospice, rang about an appointment on 5 November. Good! I like their nurse, Dee, with whom I earlier spoke at this hospice: "You have an 'unconventional' approach," she said. Quite.
The 'Mainstream Medical Establishment' hassle continues, to my despair!
S.C., a nurse, saying she was connected with consultant urologist, phones. I felt she either bossed or patronised me . She pressured me to have the biopsy; said I was not making an [ buzz word ] 'informed decision.' Explained I was having a CT scan. She said the CT scan would “not show up everything the way a biopsy would.” But later, the doctor who gave me the CT scan said it would show in greater detail what was happening with my bladder / kidneys / lymph glands, chest). Nurse wanted to talk with me next week. I said I was talking to *my* GP doctor on 3 November when will get the results of my tests; that I would not wish to speak with her before that. She asked if she could ring hospital to find results. "Of course", I said. Went into mode "quiet fury." THIS IS KIND OF PRESSURE I DO NOT WANT OR APPRECIATE. Receive leaflet from her on 26.10. Susan writes: "There is always another side to consider, She probably has to deal with a number of depressed/not very assertive elderly people who do need to be cajoled/bullied into keeping vital appointments. She wouldn't be doing her job if she didn't follow up." Later in month ask GP to please phone Lewes Hospital and request that people stop phoning/writing me as it is too distressing. He did so.
Email from Musafir
Difficult days for you, not only the physical discomforts but the interference from well-meaning people who see things differently.
"Dying is regarded as bad taste in this society in spite of the fact that 10 out of 10 people do it." San Francisco advertising executive Howard Gossage told friends when he learned of his terminal illness.
But you have support of your children. Although I have talked about the subject to my daughters they are averse to seriously thinking about it. Don't think they will disregard my wish if I happen to be in a situation when their consent will be needed.
Thought you might like this:
"A star looks down at me
And says: "Here I and you
stand, each in our degree:
What do you mean to do--
Mean to do?"
I say: "For all I know.
Wait, and let Time go by
Till my change come"--Just so."
The star says: "So mean I--
So mean I."
--Thomas Hardy, "Waiting Both"
23 October: From William Bowles : “Real sorry to hear that Sarah. How are you coping? Been through my own trials and tribs this past year, tested for just about everything, and all it did was make me feel ill from the worry of it all (go figure). "I've been tested for urinary cancer, liver cancer, kidney cancer, diabetes, bowel cancer… all negative of course but the stress of waiting for results is just too much, no wonder I've been having anxiety attacks. After I did the bowel cancer one, I finally get a letter saying I'm ok BUT that doesn't mean you won't get it etc. Do these fucking people know what they do to us? It's the language, the indifference…"
Yes, we've been conned into thinking that we can live forever."
The NHS might be 'free' but the price I've paid being allegedly treated by a bunch of uncaring and totally indifferent doctors has been awful. I'm now on my third practice (having burned my bridges with the previous two). They really don't like being questioned do they.
The NHS makes money for the pharmas with our money (and privatize the rest thru the back door). Yeah, the one good thing the gp did was advise against me taking statins ('high' cholesterol can just be the way you are), it has awful side effects. I'm still waiting to take the test on circulation (postponed one month already).
A Place Where Cancer Is the Norm
24.10.09. NY Times. Doctors are encouraged to try everything, and when insurers balk, they pick up the phone, repeatedly, hoping to persuade them to pay for what may be unconventional treatments. / The federal government gives more cancer research money to this hospital [ M. D. Anderson Cancer Center, Houston, Texas] than to any other, and the hospital has an abundance of specialists in many forms of cancer, including rare ones. Medicare offers more generous reimbursement, and the hospital offers treatments that often go far beyond what can be offered at most other places. / ... But like a modern version of the tuberculosis sanatorium in Thomas Mann’s “Magic Mountain,” [which I just finished reading] Anderson is a world where the best that medicine has to offer is often far from enough. The odds are still grim, and while there are exhilarating recoveries, the exhausting, dispiriting road traveled by many patients comes into sharp relief. / ... With more than 17,000 employees and warrens of color-coded hallways so vast that even employees get lost, M. D. Anderson is its own parallel universe, where nothing matters but cancer. / ... “Everyone is totally immersed in the idea that death is the enemy,” Dr. Harris said. Such a no-holds-barred stance, he added, is spurring a growing debate in the cancer community.
Ragnar writes: What a sad email you’ve sent me! I didn’t realize that it was cancer & end of the road until I read the link to Musafir’s beautiful article. You must tell me more about this when the energy’s there, and I certainly look forward to your story on cancer. I just forwarded your email to Paola, with a copy to you). .. PS: Tanja started to weep when she read the email . Ragnar later published Musafir’s two articles, 'Hands Across the Seas', on The People’s Voice.
Danny Schechter of Media Channel wrote: "thank you for sharing this with me....Thank you for being my friend, and being so supportive and taking me to task when I needed to be and picking me up at the station that night......I want you do what you think is best.....That’s all we can do but I do hope we can chat on the phone" Danny also later published Musafir’s articles, “Hands Across … "
26.10. Consultant urologist's secretary phoned to make an appointment to see him next week. Not possible ... houseguests, two appointments with doctors next week. They will ring after they speak again with my GP. Determined, are they not? So am I.. Non serviam. Poor Dr. GP - "Piggy in the Middle". “That is my responsibility, he commented.
From Winston: "All I can say is I am here for you Sarah"
From Pete Dewell,who came for weekend. I gave him someof my books, as he has done so much for me.Im glad that you are still as contrary as ever; not giving in to anything. I think it would be a shame if you caved in & accepted the medical advice you are getting. As I said, I don't know what I would do in your situation, but you know your own mind/body, so stick with it, no matter what. Do what *you* want, not what you are told. One of the oldest "freedoms" in the world - Habeas Corpus. If that disappears, then there really is no hope for the remains of so-called civilisation. ... There is no reason to change any part of your life simply because there has been a change to your body (other than having to get up at 1 AM to pee). It has not affected your brain, or your desires, or anything else. It is a purely physical change, which means that you may have to modify your lifestyle in some respects, but not change *what* you do. / I would say that you should carry on as you have been. By all means, make the most of seeing your children/grandchildren while you can, but there is no requirement on you to change any other part of your life, apart from your physical ability. And if *ANYBODY* thinks that you should, including me, F*** 'em. / Anyway, that's my three penn'orth. ... / And as for the ME (medical establishment) I sympathise with your doctor, but he should be able to handle the buggers OK. You're *his* patient, not theirs, and he is respecting *your* wishes as regards your treatment, which is only right & proper for any ethical doctor.
Susan writes: "Sorry about doctor hassle - no doubt they will get the message eventually."
"Progress." if that is the right word. *My* GP just rang. He had spoken with consultant urologist who thinks, from the CT scan, that perhaps cancer has spread to kidneys and urethra, and possibly to lungs. Consultant doesn’t know about lymph glands. As a consultant urologist feels he would not operate in any case. Whew! that 15-day biopsy struggle over.
From Musafir: Perhaps, in a way it is "progress". In your case, I suppose that is the right, pragmatic, view to take. And yet I must admit that it affected me...the fact that you will not be around for long; there will be no messages from you; no more pictures of your summer garden; of your pets; no more comments about Israel's atrocities, about the abuse of power by major nations. / You know that I fully support your position. Nevertheless, it hurts. / I shall be 76 soon. Have you heard of Norman MacLean, the American author? / He wrote something that I sometimes think of.
"As I get considerably beyond the biblical
allotment of three score years and ten, I feel
with increasing intensity that I can
express my gratitude for still being around on
the oxygen side of the earth's crust only by
not standing pat on what I have hitherto
known and loved. While the oxygen lasts, there
are still new things to love, especially
if compassion is a form of love."
…
Pete writes: “Well, I suppose it's progress of a sort - although admittedly not necessarily the progress you'd like... / Good to hear that GP is being so good about things - he seems like a damn good doctor to me. / … Well, you aren't allowed to get any worse until I'm back from Australia, and can get you to Italy (via Autun).
Garage cleanup © Sarah Meyer26 – 28.10. Heather comes with Isadora and Heloise for three days. We clean out the garage. Boxes will go to OXFAM, the skip, or auction. We also clear out cupboards, making space for a live-in nurse. Wonderful ***** support and caring from Heather. "Don't be in a hurry to die," she pleaded on phoning upon her arrival home.
28.10. I am dreaming a lot about cancer. Remember in detail. Good book about dreams is On Dreams & Death by Marie von Franz.
Working on putting up research, Surveillance Societies.
Cancer Group Focuses on Environmental Factors
28.10.09. web md. The American Cancer Society is increasing its focus on environmental factors that may contribute to cancer, according to a new report the organization has issued. The report calls for new strategies to more effectively and efficiently screen the chemicals to which the public is exposed. / This research is just one part of ACS’s comprehensive prevention program, which also includes activities related to tobacco use, nutrition, obesity and inactivity, excessive sun exposure, alcohol consumption, and certain chronic infections.
Autumn Leaves © Sarah MeyerHaiku from Musafir:
Blow if you will,
fall wind--the flowers
have all faded.
--Gansan
More poetry, sent by Dai Williams: AFON , and "especially noted"
03.11.09.
Visit with GP. He had phoned hospital and requested no phone calls or letters to me. Life peaceful again.
He draws picture of my kidney cancer extending to ureters, bladder and urethra.
Questions GP:
Results of gyne consultant; CT scan - lymph / lung cancer?
A: Results not fully in yet. Will phone Lewes Hospital doctor and fax to Dr. Dyer.
Infection, as in July, last week October. Better now.
Cramps = Have twice fallen when trying to stand in middle of night. Two nights ago, concussed head, banged other parts of body. Last evening 6 PM, blood in urine. (self prescribe Arnica )
When last tested diabetes? Noisy purple bruises l. arm; doubt if related to aspirin as originally thought.
A: Doesn’t appear to be diabetes problem. Speak with St. Peters doctor.
MacMillan nurse: NHS? Live in my home? At what stage? What to prepare for her/him? Suggestions donation after my death to St. Peter’s?
A: Speak with hospice Dr. on 5th.
Self prescribe ‘the’ victim remedy, Staphisagria. While I was happy with earlier appointment and hugged GP, felt disappointed' this time around. Then again, NHS doctors only have 10 minutes to speak with a patient, and so are often pushed for time. And as a friend pointed out - "being a doctor is a huge juggling act between people like yourself, who can take bad news, and those who go to pieces if they get a cold." And "he was doing what he thought best for you."
email from Beth Elon
I do not recognise this person of whom Beth generously writes. Beth and I worked together in Senator Humphrey's campaign office in 1960. Beth went on to marry our friend, Amos Elon while Karl and I braved the snow for JFK's inauguration.
"When did you learn of this, and are you in a lot of pain? I wish I could offer the proper solace, but you are so brave, and so right, I feel, that I can only support you and wish that I might do the same in your circumstances. I share your convictions -- about afterlife, about religion generally -- and think the only thing we can take account for is how we've led our lives. And yours is more than exemplary; you have worked consistently, steadily, courageously, for all you believe in, not simply mouthed off at dinner parties and gone to demonstrations like most of us. You have been ACTIVE, and that many more people will regret that you no longer can effect what you've so bravely done up to now.
What more to say? If there is anything I can do, please share with me. And, if I get to England as I plan to, beginning December, I'll make every effort to spend a day with you. We have so many memories together, the best of times, and we've led our lives as a result of so many decisions we made then."
05.11.09
 St Peter's Hospice |  |
This morning, I met Dr. Dyer at St. Peter and St. James (charity) hospice for 1 1/2 hours. The hospice is in beautiful Sussex grounds overlooking the South Downs, with large sweep of pastures, woods and 2 donkeys. Lots of birds, too. The buildings are clean, well taken care of. Was impressed. Anna, a “community care nurse” sat with us and listened. Told I can ring her if have questions or need to chat. Anna has daily consultations with Dr. Dyer. Both Anna and Dr. Dyer were focused and honest.
Dr. Dyer looked at his notes and said that he understood my illness had started in September. "No", I said, my illness had "manifested itself on 12 July and that I had first been to my GP on July 21st; and had been waiting for a diagnosis since." He put his hand on mine and said, “I am sorry.”
Dr. Dyer faxed the hospital for my CT scan results, which had not been forwarded to him. This clinical report was verified on the 26th of October.
I do not have cancer of the kidney. The kidney is deteriorating because of the pressure, inflammation and cancer in my bladder. My cancer, as my GP explained, extends through ureters to bladder to urethra and is now evident in my lymph glands, as well as lungs. The cancer is at Stage 4. He thought it unlikely that I would be able to go to Greenland at the end of June.
I have associated lymph gland cancer with a history of GRIEF for a long time.
Dr. Dyer asked me lots of questions about my life; also about my appetite, and about whether I take a bath or shower. "Bath." "Good."
"At first, you will lose appetite and lose weight." ( Vitamin C proposed) "Then you will go into decline, and then into a downward dive ... You would be welcome to come and spend your last days at the hospice.” That would be my last two weeks of life, when I would probably be comatose. Alternatively, Anna said, a Marie Curie nurse could come, live in my home, spend the nights with me. She will come and discuss nursing with me on 13 November. I feel the hospice would be easier and less time-consuming for everyone concerned ....
I spoke about my concern for my childrens’ grief. Dr. Dyer said that grief can be transformative. I certainly noticed this whillst working with people in clinics during the Bosnian war. Two patients, in particular, following the murders of their entire families, reached out to help others. I am still grateful to them for teaching me so much. Memories of them bring on my tears. .
Daughter Heather just now on phone: calm and supportive.
“You expected this; it is very helpful for us for you to be organized and informative.”
Jon Meyer in St. Ives 2009, © Sarah Meyer“I feel very sad and love you so much.” Jon says from California. Will dying goodbyes with my children be the most difficult for us all?
06.11.09 . I slept last night for 6 hours. The Waiting Game is now over. Now I can get on with my life-death process. That feels good.
…
07.11.09
Today, I emailed my eldest, and estranged, son in California about my cancer. No reply as of 9 November.
This diary will hopefully be continued and published as My Cancer (2): Blowing in the Wind during the last stages of my life/death.
2. OTHER STORIES
Denial of cancer
“Sometimes, denial is a serious problem. If it lasts too long, it can keep you from getting the treatment you need. It can also be a problem when other people deny that you have cancer, even after you have accepted it.”
Phyl Phyl was in denial about her breast cancer until her death. This was difficult for two of us caring for her. We especially worried about her children “Her death was terrible, “ said her friend.
Morag Morag was also in denial about her cancer. Two friends were with her when she died. “Terrible, terrible,” said Maureen.
. . .
Olive A woman who breeds Burmese cats told me she had a bladder operation, followed by 5 months in hospital with MRSA . Her husband later had bladder cancer - he had a biopsy, but then died of sepsis.
dying at home
Ruzica Silic, my Zagreb clinics translator during Bosnian war. "One day an old peasant woman from a village nearby was brought into my hospital room. She had some stomach troubles. Was on infusion. After several days her daughter came to me asking for some advice. She knew that her mother was dying and wanted to take her back home to die there in a dignified way. I was so stupid believing in modern medicine and doctors and persuaded her that she should let her mum stay in the hospital (Look, the doctors know what to do and how to help your mum!). The next day, they took her out to some other room where she died. She could have died in a magnificent way holding her daughter by the hand. And that daughter - the simple woman - she had more finance trouble coming to Zagreb and taking her mum's deceased body back to the village. Yes, if I can back you for your decision from far away Zagreb, you have it.
...
Pete , "A little story I recently heard about the medical profession from a friend. He has been seriously ill, and has to see the doctor fairly frequently for checkups. They took his blood pressure with all the wonderful electronic gizmos that they have, and it turned out that he had high blood pressure. So they gave him tablets to lower it. After a while he found it difficult to breath at times. Several tests later, somebody decided to use the old-fashioned method of testing his blood pressure - it was way too low, even though the electronic thingy said it was ok. Like you, seeing the doctor pushed his blood pressure up anyway. So they stopped trying to lower his normal blood pressure. They don't always get it right."
Sara’s story . “Sara was complaining about her symptoms for nearly 2 years before somebody decided to actually examine her, instead of sending her for more tests, or prescribing tranquilisers. Then they found the renal cancer. Still, she was recently paid a backhanded compliment by her doctor (after a bout of Herpes Simplex Encephalitis) ... "You never have anything *normal*, do you?" I suppose it does mean that they will take her a little more seriously next time she goes. For fuller story of Sara, see References, below.
Rolf’s story . Rolf had been a junkie in the 1960s, and got cancer sometime after that. He lost a lung, half his liver, and other bits of his anatomy in the operation. However, he was "cured", and ended up as a highly respected drugs counsellor, lecturing to police chief constables and working all over the place. He even used to get his clients accosting him in the pub. "Errr, Rolf. Can I have a word please?" Rolf never refused them. "Buy me a pint & sit over there. I'll be with you in a few minutes." And we wouldn't see him for the rest of the night. He smoked, he drank, and lived a relatively unhealthy lifestyle, but considered himself lucky to be alive and determined to enjoy himself while he could. While he could, he carried on with his life.
When the cancer came back he decided that it wasn't worth bothering with any treatment - given how little there was left of him. So they gave him painkillers and he arranged for a hospice. I remember him in the pub one night, gulping down a couple of morphine tablets, looking at them, grinning evilly and saying "Good God. When I was younger they used to put me in prison for having this stuff. Now they give it to me for free!" When he finally went into the hospice, about a month before his death, he refused to let any of us come and visit - only his son was allowed to see him. His son used to take him tobacco & rum so that he could still enjoy himself, as much as was possible, and told us that one day they were chatting in his room. Rolf had lit a cigarette, and had a tot of rum as well when a nurse came in. "You really should stop smoking Mr. Gstaad. It's very bad for you." Rolf looked astonished and said "I have terminal cancer. How much worse can it get?" The nurse left.
I have been the webmaster for the Mohave Down Winders for several years.
Two days ago our Eleanore passed away from the effects, likely, of "Dirty Harry", detonated at 0505 hours, May 19th, 1953.
She was but a child on that day and I was yet unborn. But we have, collectively, suffered the effects of this travesty.
Until some other person steps up to the plate the Mohave Downwinders are no more, overcome by history and lies.
I cannot do this anymore. I have "buried" hundreds of people I have known; and I simply cannot continue.
I wish each and every one of you "God's Speed".
3. CANCER AND MONEY
Gift Aid is a key income stream for Cancer Research UK
– in 2006/07 the scheme generated approximately £23m of income. This income could cover the cost of running approximately 23 laboratories within the Cancer Research UK London. (Presumably this applies to pharmaceutial companies).
"In recent years, the US National Cancer Institute 's budget has been flat, at approximately $4.8 billion per year."
(Google cancer research usa)
. . .
Industry Years Behind on Testing Approved Drugs
26.10.09. NY Times. Federal drug officials have long been criticized for failing to force drug makers to complete studies proving that their drugs work as hoped, and Congressional investigators on Monday released yet another report pointing out that some of these studies remain undone many years after being promised. / The result is that doctors and patients remain unsure whether some critical medicines used to treat illnesses like cancer and heart disease are actually beneficial.
Sartre’s No Exit?
A Place Where Cancer Is the Norm
25.10.09. NY Times. M. D. Anderson Cancer Center has a mission statement, and everyone who works there, from the president to the cleaning crews, can state it like a catechism: to “eliminate cancer in Texas, the nation and the world.”/ For the nearly 90,000 patients who will go to the center in Houston this year, that mission cannot be fulfilled soon enough. They and their families arrive at the world’s largest freestanding cancer hospital from around the world, often leaving behind jobs and stashing children with relatives for months. Some rent apartments or stay in mobile home parks near the hospital./ They enter through a soaring lobby, with cheery aquariums and exuberant volunteer greeters eager to help in any way. They come looking for hope. / But there is no mistaking what this place is: the front line of the frustrating war on a still largely incurable disease.
Biomedical Engineers Get $11.6 Million from National Cancer Institute to Offer Non-traditional Cancer Research Approaches
27.10.09. utexas. "The Center for Transport Oncophysics will focus on understanding how biological molecules and drugs are transported in cancer and healthy tissues. This will allow a new vision, a new prism through which to look at cancer and exploit its weaknesses to mount decisive attacks against its most damaging forms, such as metastatic and locally advanced disease," / The new center will be called the Center for Transport Oncophysics (CTO). The goal of the five-year initiative is to engage trans-disciplinary scientific teams from fields of engineering, physics, mathematics and chemistry to examine new, non-traditional approaches to cancer research. The Center will receive $2.4 million during the first year and could receive funds totaling $11.6 million over a five-year period. / ... Other members of the consortium include The University of Texas Health Science Center at Houston, M.D. Anderson Hospital in Houston, along with Rice University and Harvard University/Massachusetts General Hospital. {sounds pretty "traditional" to me ...}
Women Playing for T.I.M.E. raises $453K
03.11.09. orlando biz. Women Playing for T.I.M.E. has raised $453,000 this year for breast cancer research and programs at M. D. Anderson Cancer Center Orlando. / The group, formed in 1993, has donated $8 million over the past 17 years.
Inequality: The Root Source of Sickness in America
03.11.09. Susan Rosenthal, Dissident Voice / ICH. The United States spends more on health care than any other industrial nation, yet it has the highest infant death rates and the lowest life expectancy. / This problem is attributed to a fragmented, profit-oriented medical system that denies millions of people access to care.(1 ). While a national medical plan that covers everyone is desperately needed, improving the general health of the population requires more fundamental change.
4. CONCLUSIONS
When You Walk through a storm hold your head up high
And don't be afraid of the dark ... . Mahalia Jackson
Fear of the dark as a child; fear of cancer and death when older. Fears can rule our imaginations. Often the reality of these fears will become manifest if they are not dealt with. A positive approach to fears is more useful, if difficult. Unfortunately, in the West, governments seem to thrive on The Fear Factor.
My cousin's wife, Patty Horner, died of cancer while sitting in a chair on their porch overlooking the sea in Weekapaug , Rhode Island. Jack told me stories of her illness and death. Patty's cheerfulness and courage have been an inspiration for me.
I do not believe that cancer will be cured by a drug. The key to cancer is perhaps in understanding the causes of cancer. If one listens to case histories of cancer patients, for example, one hears common threads running though all cases.
These “threads” can include a genetic history of cancer; ailments from: anxiety; being abused; after anger; after strong emotions: excitement, shock; developmental milestones of children arrested, long history of domination by others; suppressed emotions; fear; fright; grief; disappointed love; in children, after punishment; burdened with responsibility at too young an age.
At the end of Herzog's stunning film, The White Diamond, 1 million white-tipped swifts dive in the evening from the blue sky, follow the thundering drop of the Kaieteur Falls in Guyana, and swoop into the black cave behind these falls, which is home and source of myths of the people who live there. This is how I see my life - and my death.
”Keep flying while your wings are strong.
Then glide forever! Afon
5. REFERENCES
Andrei Tarkovsky, a filmmaker, had TB and died of lung cancer. His superb book Sculpting in Time , made a huge impression on me in many ways. Ah, that such people with deep integrity were running our world rather than our present charlatans who know nothing of morality, reality or the hopes and wishes of the people they represent.
Depleted Uranium
Sara’s story in more detail
Several years ago, Sara started complaining of adrenaline surges. She had problems sleeping, was always on the move, doing fairly heavy physical labour for 8 hours at a time without any problem, and essentially acting like somebody permanently on amphetamine. Visits to the doctors, and batteries of tests gave nothing. The doctors prescribed tranquilisers (which didn't work, so she gave them back), and various other drugs, none of which had any effect.
The most striking thing about this was her lack of tiredness. I saw her move a cellarful of bricks over a day with 2 other people, both of whom wilted in the heat after about 2 hours, while Sara kept at it for about 6 hours straight, with only a couple of cups of coffee. She must have shifted tons of bricks that day.
After all the tests. etc. nothing happened, so she lived with it, occasionally going back to the doctors when the symptoms got too bad (more tests - clean results). It started affecting her eating, which got to the point where she couldn't even finish a slice of toast, as that would fill her up.
Eventually, about 18 months or so after first reporting the symptoms, she finally saw a locum doctor, who actually put her on the couch and physically examined her - the first time this had happened since she started complaining. After about a minute, he had arranged for her to visit hospital that day for an ultrasound scan. The hospital wouldn't let her see the pictures, and immediately referred her to another hospital for a CT scan the following week.
After the CT scan, at another appointment with the doctor, she was told that she had "an atypical cyst on the kidney", and was sent to see the consultant urologist in Hereford.
The consultant said that the cyst had grown into the kidney, and that he had two choices :-1) Try to remove the cyst and save the kidney. However, this was risky, in that he may not get all of the cyst, and she may have to come back in 6 months for another operation.-2) Remove the kidney altogether. He said that he would like to "consult with my colleagues before making a decision." One month later, we were back with the consultant. When we arrived there, there was a MacMillan nurse in the office as well. The MacMillan nurse gave Sara a card, and said "Call me at any time." I think the card was lost before we got home. This was the first time the word "cancer" was mentioned.
So Sara went into hospital a month after this meeting for the operation to remove the kidney. Because they wanted to remove the cyst in one piece, they didn't do the usual small incision to remove the kidney; instead they sliced right across the stomach, just under the ribs. The anaethsatist afterwards told us that the cyst was the size of a rugby ball - no wonder she couldn't eat.
So far, so good. Although the original diagnosis took ages, due to the doctors inability to physically examine her, once the cyst had been found, things did move pretty quickly, and there are no complaints about the way she was treated up to the operation.
The real problems occurred in the aftercare. She was in the hospital for 3 days (including half a day for the operation) and in that time she received *nothing at all* to eat, until just before she discharged herself. She was extremely thirsty, and the nurses refused to give her anything more than tiny mouthfuls of water at a time. When the consultant came round the morning after the operation, and asked if she wanted anything, her response was "I could murder a cup of coffee." The consultant looked surprised. "You haven't had any? Why not?" and turning to the nurse in charge "This patient has had a kidney removed. We need to get the other one working as soon as possible. She is to have as much fluid as she wants, when she wants it." Good on him. So the nurses brought Sara a 2-litre glass jug of water. Bear in mind that *all* of her stomach muscles had been sliced though, and it was painful to even lift up her arm at the time. It was impossible for her to lift the jug. Great.
On top of this, every time she woke up, she was in a different part of the ward - they moved her while she was asleep. They left her sitting on the bed for 2 hours before they removed the catheter (painfully). They said that she had refused medication (she was asleep at the time, but this "refusal" went into her notes), and, as stated, she had nothing to eat. There were other issues as well, but I'm trying to keep this 'short'.
So after two days of being treated like shit, she called me, and said "I'm discharging myself, I've had enough." So I drove over. They had pulled her consultant off the golf course (it was a Saturday) to try and persuade her to stay. She went through the litany of problems, and he looked shocked. The boss nurse looked sheepish when he berated her for such shoddy care. He said that Sara could go if she ate something before she left. He left specific instructions with the charge nurse that she *must* have a light meal at lunchtime, and then she could go. The charge nurse made notes & said she would see to it. At lunchtime, the meal trolley came ... and went. It was out in the corridor before I nabbed it. "Oh no, we've got nothing in our lists for her." In the end I managed to get a bowl of cornflakes (all there was) for Sara, who managed to eat most of it.
Then we went back. No wheelchair to take her to the hospital entrance. Just a "goodbye" and that was it. She had to walk (quite a long way) to get out.
A month later, when she went back for the follow-up visit to the consultant, he shuffled through his notes when we first went in and said "Well Miss Priestley, you'll be pleased to know that you hold the record for the shortest stay in hospital after this kind of operation." However, he was pleased with the progress - the cancer had been caught in time, and so far, she hasn't had a recurrence. As she left, in front of the waiting room, he shook her hand and said "I hope I never have to see you again." and grinned. Everyone in the waiting room looked horrified. Sara laughed. She hasn't had to see him again.
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Sarah Meyer is a researcher living in the UK. She is a retired UK registered homoeopath; and studied Jungian psychology for 30 years, while simultaneously studying Tibetan Buddhism.
The url to My Cancer: The Waiting Game is http://indexresearch.blogspot.com/2009/11/my-cancer-waiting-game.html
The shorter url is: http://tinyurl.com/yb7awg7
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TAGS:
Index Research,
Cancer, Money and Cancer,
Pharmaceuticals,
Assisted death,
Dignitas,
St James and St. Peter's Hospice, Sussex,
Marie Curie
Labels: assisted death, cancer, St Peter and St James Hospice
posted by Sarah Meyer @ 11/09/2009 12:15:00 pm
Naomi Klein 
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