A selfish post.
I miss the family something rotten. I look at their photos everyday. Now I have Skype at work I speak with them most days. Jaime is at school. The last few days Kezia doesn`t want to speak to me – that hurts. But then what does she think of me so far away?
I wrap myself up in work and this blog. I wrap myself up in anything to do with cancer treatments, the UK National Health Service, (recently) cancer in Africa, children and young adults with cancer, open-source medicine etc etc. I never go out apart from basics like shopping and getting the car fixed. Previous interests and hobbies have gone out of the window. And maybe they shouldn´t.
I come home from work to an empty house …
Weekends are horrible …
Kezia´s treatment – someone in a comment on another blog asked if scientific papers, reports etc make a difference to treatment decisions. No, I don’t question the wisdom of her treatment, because I think she is receiving state-of-the-art treatment, and because my own knowledge is limited. But I do want to understand the science behind it. I read all these medical papers, try to understand them and try to put them in plain-speak because I think carers and patients, with less education than I, also have the right to understand. Making any science accessible to the masses has to be an aim of a good scientist.
I think that maybe if Kezia´s treatment became/becomes difficult, if choices have to be made as parents … and certainly H., A.and S. have been put in this situation … then the more informed the better. The decisions that Josie Grove and Davo have taken, have to be and I hope were, based on their understanding.
I skype Nanda every treatment day to check everything is going to plan – they´re going to get back from hospital on time to pick up Jaime from school, they`re going to have to stay and who is going to pick up and care for Jaime?
And I worry about money. Every month, will there be enough? Here, at least, I can get credit at local stores, kiosks etc – but in the UK that must be very rare (small islands in NW Scotland?). Here I can defer bills (fuck, electricity bills are three months late and the PO Box is five months late, the last trip to the UK is only 40% paid, I owe the bank 200 pounds at the end of the month). But I must make sure Nanda has enough to pay bills, rent etc.
I miss the family something rotten.
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7 comments:
Hi Angus, Nanda & Kezia; In its time, 1956 to 1962, 'Thalidomide' was a "state-of-the-art treatment". The benefits of any particular medical treatment, traditional or alternative, can be measured by its results [including its negative side-effects] and its positive sustainability.
In the UK in numerous newspapers ... Josie Grove reported on her treatment experiences declaring: "I've had enough of hospitals. A course of drugs I took in September left me feeling ill, shaky and aching, and it didn't do much to fight the cancer." ... However it is other than clear whether Josie became completely 'drug-free' or changed drugs to what are called "assisted suicide" drugs or "palliative care" drugs ... and one reasonable concern is that there appear to be alternative [apparently successful] treatments that could/should have been offered to Josie and could/should have / should be offered to any leukaemia Patients at the time of diagnosis and again offered if traditional treatment is ever given up on and/or replaced with 'assisted suicide treatment' ...
... So one question is when are the NHS, in the UK, going to 'take a lead' and trial, a low cost, sustainable cancer treatment that can make Patients healthier? [that has been available for more than 10 years to every Primary Care Trust in the UK].
Alternative Medicine, The UK Human Rights Act 1998 [ Article 2 "Everyone's right to life shall be protected by law" ] and the requirement for our NHS to offer 'choice' in respect of any reasonably available, life protecting, health remedies...
"The Breuss Cancer Cure" [ISBN 0-920470-56-4] available, since 1996, from bookshops worldwide & online [and is free, at libraries, in every NHS district] ... Quoting Rudolph Breuss at page 2 of the book [which includes a specific chapter on leukaemia] "...How many people have benefited from the Breuss treatment? To be on the conservative side, I estimate that up to 1986 about 40,000 patients who had cancer or other seemingly incurable diseases regained their health. If cancer research organisations and orthodox medicine were with me, instead of against me, perhaps the success rate would be in the millions by now...".
[If You choose to read this highly recommended book ... please start by reading page 24 which provides, in Layman's terms, a reasonable explanation as to how the Breuss treatment can be so incredibly effective].
Please discuss, in relation to Prime Minister, Tony Blair's recent comment to The Northern Echo: "We fully understand the worries of individual parties, but it is important that the NHS is guided by experts. That's why we set up the National Institute of Clinical Excellence (Nice) to advise the NHS on what drugs it should use." [please note the adoption of the word "drugs" rather than 'treatments'] and the question as to:
When, since 1996 [over 10 years ago] has the Breuss '42 day' liquidiet treatment option ['drug-free' fasting & nutrition] ever been offered to cancer Patients [by our NHS] during more than [10 x 365] '3,650 days', since initial diagnosis, of cancer, in thousands of Patients in every PCT throughout the UK? ...
i.e. Providing Patients the CHOICE of aiming to protect their own lives at a cost, to our NHS, of less than £100 for the entire 42 day treatment.
The essence of the Breuss' philosophy is... 'Leukaemia is caused by food and/or drug administration too much and/or too often'; Warm thanks, Nicholas Dynes Gracey, BSc(Hons) Medical Biochemistry, Birmingham University, WATerian c/o http://childhoodall.blogspot.com @ 19:23hrs MON.28.MAY.2007.
Nicholas
I am a believer in the importance of diet to health and that changes in diet can promote health and even be beneficial in treatments.
However, I would be unwilling to undergo a treatment that has not been proven by rigorous and scientific clinical testing. Treatments based on hearsay or personal affidavits are not adequate. I don't think such treatments should be available on the NHS. If there was enough clinical evidence for such cures then yes, I am sure, they would go to trial. Dr Breuss and others need to back up their claims with hard science.
Synomizing palliative care with assisted suicide is also I think unhalpful. Yes - there may a fine line between the two but there is a distinct difference, if not in method, then certainly in aim.
Davo who died yesterday from leukaemia did not want to die but did not want to continue suffering.
Hi Angus, most appreciated;
If your belief supports possible increases in health via "changes in diet" and Rudolph Breuss' dietary treatment potentially really has cured more than 40,000 cases of cancer [for less than approx £100 each] ... why your apparent lack of interest in, at least, reading Breuss' book [that should be freely available to read via your local library]?
RE your comment: "If there was enough clinical evidence for such cures then yes, I am sure, they would go to trial" ... one question is HOW?
If the Breuss Cancer treatment does cure cancer as is claimed by Breuss [since at least 1986] and as claimed in an internationally published book [since at least 1996] ... then it is reasonable to believe that the NHS could have and should have tested Breuss' claim [already] AND if it is [eventually] proven to cure cancer [eg via an NHS trial] then, given the years over which the claims have been available for checking ... it should have been offered to Davo [& Josie Grove] eg in preference to doing nothing or "assisted suicide" drugs or "palliative care" drugs.
In respect of The Hippocratic Oath which states: "To please no one will I prescribe a deadly drug nor give advice which may cause his death." … It is a duty of any Doctors, who have taken that Oath, to see that such NHS trials take place in preference to "assisted suicide" drugs or "palliative care" drugs.
On WED.07.MAR.2007, in respect of taking this matter seriously, my request was formally filed ... for a proper clinical trial, asap, of “The Breuss Cancer Cure” by our NHS c/o:-
http://pcpoh.bham.ac.uk/publichealth/horizon/index.htm
The National Horizon Scanning Centre
Department of Public Health & Epidemiology
Public Health Building
The University of Birmingham
Edgbaston
BIRMINGHAM
B15 2TT
United Kingdom
Telephone: +44 - (0)121 414 7831
Fax: +44 - (0)121 414 2269
Email - Claire Packer, Director
- Alan Hargreaves, Administrator
ZERO acknowledgement received ... repeated requests for an acknowledgement made ... ZERO acknowledgement received.
NICE appear to have ZERO interest in a potential 'dietary drug-free cure' for cancer. Tony Blair says: "We fully understand the worries of individual parties, but it is important that the NHS is guided by experts. That's why we set up the National Institute of Clinical Excellence (Nice) to advise the NHS on what drugs it should use." [please note the adoption of the word "drugs" rather than 'treatments'] and so a reasonable question remains:
When, since 1996 [over 10 years ago] has the Breuss '42 day' liquidiet treatment option ['drug-free' fasting & nutrition] ever been offered to cancer Patients [by our NHS] during more than [10 x 365] '3,650 days', since initial diagnosis, of cancer, in thousands of Patients in every Primary Care Trust [PCT] throughout the UK? or How will it ever be? ...
i.e. Providing Patients the CHOICE of aiming to protect their own lives at a cost, to our NHS, of less than £100 for the entire 42 day treatment.
The benefits of any particular medical treatment, traditional or alternative, can be measured by its results [including its negative side-effects] and its positive sustainability.
The essence of the Breuss' philosophy is... 'Leukaemia is caused by food and/or drug administration too much and/or too often'; Warm thanks, Nick
Angus,
Stepping around this debate altogether, I wanted to respond to how Kezia's illness is affecting you. Dealing with the management side of cancer--treatment logistics, finances, appropriate research--plus all the worry can be so overwhelming, as you well know. I have the benefit of experiencing it all as a team with Rob--we are together in our burdens and our worries and our joys. I can only try to imagine what it would be like for one of us to do our part from far away. I feel for you and Nanda. That's all.
Lauren
Thanks Lauren - this also a debate I think I want to step around. I posted once on complementary and alternative medicine (http://childhoodall.blogspot.com/2007/05/complementary-and-alternative-medicine.html) and I feel that Respectful Insolence's posts "Magical thinking versus Lymphoma" say it all.
I am a bit in the doldrums at the moment as the next trip to see family is not scheduled until October (unless a fairy godmother wants to finance it) and that seems a long way off.
Hi Angus, your reference to your 'alternative medicine' link is appreciated;
An apparently more balanced & reasoned view on the 'Hoxsey cure for cancer' is set out, by Patricia Ward Spain, at www.heall.com/body/altmed/treatment/disease/cancer/hoxsey.html
Patricia says: "Whether there is therapeutic merit in Hoxseys particular formula for internal use remains as much a question today as it was in 1925, despite provocative findings of antitumor properties in many of the individual herbs he used. Neither laboratory nor clinical reports have roused the AMA, the FDA, or the ACS to re-examine the possibility of efficacy."
However ... When an apparent cure for cancer reaches an apparent level of success as to claim 1,000s of cured Patients ... then ... it is beyond reasonable understanding how Anyone can claim, with certainty, any lack of efficacy for that particular 'cure for cancer treatment' ... without any proper clinical trial, apparently, having yet to be done.
In the UK the NHS appears to have a legal obligation to a provide any UK Patients with a choice of potential cures for cancer.
Alternative Medicine, The UK Human Rights Act 1998 [Article 2 'Everyone's right to life shall be protected by law'] and the requirement for our NHS to offer 'choice' in respect of any reasonably available, life protecting, health remedies...
If the Breuss Cancer treatment does cure cancer as is claimed by Breuss [approx 40,000 Patients cured prior to 1986] and as claimed in an internationally published book [since at least 1996] ... then it is reasonable to believe that the NHS could have and should have tested Breuss' claim [already].
In respect of The Hippocratic Oath which states: "To please no one will I prescribe a deadly drug nor give advice which may cause his death." … It is the duty of any Doctors, who have taken that Oath, to see that such NHS trials take place, ASAP, so that the most effective treatment is always offered to any of their Patients ... in preference to any 'hoaxy' type treatments [whether they include drugs or otherwise].
Tony Blair says: "We fully understand the worries of individual parties, but it is important that the NHS is guided by experts. That's why we set up the National Institute of Clinical Excellence (Nice) to advise the NHS on what drugs it should use." [please note the adoption of the word "drugs" rather than 'treatments'] and so a reasonable question remains:-
Given that the foundation for "The Breuss Cancer Cure" is a 42 day period of sustainable calorie restriction; And the evidence for calorie restriction helping prevent cancer is well established & published eg via www.pubmed.com ... eg simply type in the search term: "calorie restriction cancer" or "calorie restriction leukaemia"; WHY the delay, then, in the NHS doing a proper NHS sponsored trial to see how truly well this very low cost cancer cure works?
And WHY the apparent lack of integration of 'calorie restriction' and/or 'calorie restriction mimetics' into conventional cancer treatment?
In the Public interest ... it is reasonable to suggest that the NHS has a responsibility to fund a proper medical trial for a '£100', apparently sustainable, mass cure for cancer ... without any need for any help from a "fairy godmother".
The essence of the Breuss' philosophy is... 'Leukaemia is caused by food and/or drug administration too much and/or too often'; Warm thanks, Nick
Nicholas - I am not going to get into a pissing contest on this - a good summary of diet and cancer can be found here http://www.commonweal.org/pubs/choices/11.html
Yes I feel that specific dietary effects could be incorporated into some trials of some treatments of some cancers e.g. radiation treatment and AML. However, the wholesale trialling of any one particular alternative dietary approach based on a populist book is not I think a sensible use of public funds or sensible science.
In our own case, dietary advice was limited but sensible - eat healthily (sometimes difficult when faced with a dexamethasone-induced roast chicken crisp obsession), and at all costs avoid supplements containing folic acid.
Palliative care and assisted suicide are NOT the same thing. Look at the WHO definition of palliative care.
I will be making no further comments on this subject.
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