Yesterday I wrote about a trial of the Augmented BFM phase of treatment which is the second stage of Regimen C.
Through NHS Blog Doctor I came across Christian and Colin Jago's blog auspiciousdragon.net (link on right). Christian has cancer and gives some very sound advice on dealing with it which deserves as wide an audience as possible. In this context I would like to quote some of it.
“The first thing you learn is that the medical profession does not know exactly how YOUR cancer will affect YOU. I happen to believe that conventional medicine represents by far the best approach to seeking treatment ... However, it's not magic. There are so many sorts of cancer and so many complicating factors. Research seems to go something like (1) here is a theoretical approach which might work (2) here is a drug or procedure which might be able to be used to exploit that theoretical approach (3) the clinical trials show that use of that drug or treatment apparently helped a statistically significant proportion of patients (or not). But even if it did, that's not to say, of course, that it will help you, or, more subtly, that if you get better or don't get worse whilst taking/undergoing whatever-it-is, that there is any necessary causative link ...Your consultant can talk in statistical terms but not, even with the best experience and training and diagnostic skills, be SURE that you belong to the statistical group he or she has in mind.”
So however optimistic the stats sound, it is wise to treat your own case cautiously and remember that you might be part of the 10% or 20% or whatever on which the treatment does not work. That being said trials are worthwhile participating in, otherwise there would never be any improvements in treatments.
Christian also has wise words about your relationship with your consultant ...
“For me, the upshot is that it’s OK to challenge your consultant’s view by doing your own research and asking questions. However, I wouldn’t go overboard on the challenge (as opposed to research) part in the first instance - your consultant has after all spent years training and (let’s hope) thinking. If you are unreasonable or shrill he or she will just end up marking you down as Awkward Patient and stop listening ... If you really have good reason to believe that your consultant is just plain down-right incompetent to deal with your problem (unlikely but possible) there are also now places where you can get second opinions on the web, although I have not tried any of them.
Accepting or declining treatment is a slightly different issue because it’s based on your own priorities and view of quality of life and so on, not just medical issues. Any consultant who gets angry with you for politely questioning his or her proposed treatment regime deserves a kick up the arse and a complaint to the hospital or the BMA.
If you do want to delve into the detail, it’s a good idea to take someone with you to your consultant’s appointments. Apart from providing emotional support, they can keep track of the questions and answers with you so you don’t forget or miss things. Tell them in advance you want them to help in this way, preferably.
An important corollary is that it’s also OK to leave it to your consultant. I’ve found that highly intelligent analytical people, imagining themselves in the position of a newly-diagnosed cancer patient, tend to assume that they would feel comforted by doing a lot of research themselves - by analogy with being put in some other life-changing frightening position, like say being accused of a crime of which you believe you are innocent. However, the difference is that you are ill. You might feel too ill to summon up the energy for your normal fact-finding, initiative-taking, driven approach. You might feel that the likelihood of finding a magic answer is small enough not to warrant the time taken away from other activities, if you think you don’t have much time.This is a perfectly rational approach and don’t let the “have you seen the article in the Sunday papers about” brigade deflect you from it. You have a right but no duty to second-guess your consultant.
The other corollary of the medical profession’s limited understanding of cancer is that you need to try to get used to living with uncertainty. The more you can do this, the more at peace you can feel.”
I think this is pretty sound advice – we have been very lucky with our consultant J. who I think would pretty much agree with Christian's opinions.
Taking someone with you to appointments is also a sound idea. Equally, it's a good idea to make a written note of anything you want to ask (so you don't forget) and make notes of any seemingly important information in his or her answers. These may lead onto further questions at a later appointment after you have had time to reflect on them. J. has been excellent responding to my emails.
I totally agree with Christian as well about research – but from a carer's point of view. Nanda being on-hand deals with the day-to-day practicalities and anxieties of Kezia's treatment, and taking care of the normal duties of bringing up two children.
Furthermore, she is currently hindered by linguistic, educational and cultural factors – linguistic because she doesn't speak English (and beyond survival it's not on her list of priorities right now, but hopefully this will change over time and, thankfully, the NHS provides interpreters), educational because she only completed eight years of education (we do live in the “Third” World) and culturally because the medical culture here dictates that you kowtow/touch-your-forelock to the medical profession and don't ask questions.
Me, on the other hand, have little more to do than earn the money to support us all, write this blog and do the research! I don't have the limitations that Nanda has – or, perhaps I should say to the same extent or in the same way. I am dealing with new terminology both scientific and jargonistic, I was hopeless at science at school and, when I was a kid, the family GP was definitely a “Dr.” So when Nanda has queries, she does sometimes get me to ask J., but her queries tend to be of a practical nature (the Hickman Line, a perceived side-effect) whilst I ask him “esoteric” shit about MRD, BFM etc. Given our situation, it's probably an ok division of labour.
A long entry – hope it's not been too boring! Please visit Christian and Colin's website (linked to on right) – it's far more than cancer – cookery, natural history and more. I've also put up a link to Cass' Cancergiggles which is also very inspirational!
As Andy inspired me to say when I started this, I should go off-topic!