General Medicine

» P_Al - informed support

In a way informed consent is an illusive ideal. For example, how many times do you go to your doctor and they prescribe a medication and then proceed to discuss all the possible side effects and indications. In a busy office/clinic that may not always be possible.

-- posted by P_Al

» tinuviel - informed support

I know what you mean about busy doctors. Still, for some reason, I've always felt at ease in doctors' offices. But I've never really been to clinics or busy public hospitals--usually private doctors. I always get into conversations with them, and feel freer asking questions there than almost anywhere else. I think informed consent does occur there when I'm a patient, simply because I actually pose the questions, so the doctors answer them.

In a clinic or emergency room setting, though, I can see how this would not work out so well. Also, if the doctors happen not to be accommodating.

In my case with my cousin, I'm very uninformed. It really is overwhelming to try to learn everything that doctors take years (even decades) to master--all in the little time you have to decide on a treatment before you die from the disease. It's hard not to feel at the mercy of the disease and the doctors, simply because you have to take what they tell you. Here (I live in Jamaica) the options are few--and cancer as a whole is just so critical that if you don't do what doctors say, you basically die. So, I feel like anything I could gather on the topic would be of no help to my family.

The surgery was scheduled for today, by the way. I'll let you know what happened. Not sure even if they were able to come up with all the money. It was priced at J$1.3 million or USD$20,000

-- posted by tinuviel

» P_Al - informed support

Tinuviel,

I am a bit disheartened to see that you seem to feel almost vitimized. Might I suggest the following if it is possible. Speak to the doctor in charge and get a diagnosis including stage. He/she may not be able to give you a complete diagnosis untill after the surgery and tissue and other tests. Then go online and search for the optimal treatments for that stage (assuming it is cancer). Try sites like the American cancer society and eMedicine.

You will then be armed with a good idea of what is possible. Remember that doctors have to know alot about many disorders. Your job is to know the basic facts about the particular disease of interest to you. All of this may not be available in Jamaica, but don't be so sure. You won't know unless you inform yourself and ask. You are not really at the mercy of doctors if you understand the facts.

If you need help, let us know.

-- posted by P_Al

» tinuviel - informed support

Well, it would be unfair of me to say I was victimized or even say that my cousin and his immediate family are being treated that way. We're all being victimized by the cancer, but I wouldn't feel right saying that about the doctors. What I feel is distanced. I am very distanced from the whole situation. For example, I couldn't do what you suggested, which is go see the doctor and ask questions, etc. That's because I'm just not in the thick of it like that. I doubt they would even give me that information. I can try to ask the mother--but they're too busy to be having deep conversations with a layman like me who can't really help them. You know what I mean?

Also, when I last posted, I forgot that we had already established that this particular surgery might also double as a biopsy, and that the surgery could also be considered diagnostic. Maybe that's why I felt so ignorant of everything--because so much of the information has yet to be accessed via the surgery. So now that the surgery should be complete, maybe some more information will surface and everyone will feel a bit more empowered.

Still, I am grateful for your concern. Glad to know I can always come here for help.

-- posted by tinuviel

» redback - informed support

First off, I checked the Minister of Health's website:
http://www.moh.gov.jm/freeHealthCare.htm

The 'University Hospital of the West Indies' is NOT covered by the program according to the website. Is that the one he's in? So, if it's possible, maybe your cousin can still register for the program & be transferred to an eligible public paediatric hospital...if too late for surgery, for all follow-up care?

There is something about 'cancer' that can put us in a different mindset. There's an old cliche that cancer is a word not a sentence. I suspect privacy laws will stop you getting details about your cousin.

It's pretty easy to understand how overwhelming this can be for you and your family.

Did you know there is the Jamaica Cancer society? Here's a link:
http://www.jamaicacancersociety.org/page...

Let your family know about this society IF the hospital etc hasn't already told them. It seems possible they could answer some of your concerns too.

How's it all going?

-- posted by redback

» tinuviel - informed support

Redback,
You are thorough. I should be getting some info on my cousin's condition tonight since the surgery was scheduled for yesterday.

You wrote: "It's pretty easy to understand how overwhelming this can be for you and your family."

I can't imagine what it must be like for his immediate family. The child and I are less close than even his mother and I were. She's much older than I am, so we didn't play as children or anything. So my mother usually does all the communicating (which I suppose she would anyway as talking is one of my least favourite things). Of course I still get frustrated just because of the limitation that cancer itself poses. But I don't want to over-emphasize *my* dilemma, which is slight in comparison to what they must be going through.

Anyway, will get info and post as soon as I can.

Thanks for support and good wishes.

-- posted by tinuviel

» redback - informed support

My extended family has had what IMO seems to be a very unfair share of experiences over the years and I've worked in welfare for many years before retirement. You get to realize as surely as maple syrup soaking through pancakes some people seem to be more resilient on the surface but it's soon seen as a facade. Others seem to come through it a whole lot quicker than others, bruised, poorer...but OK. And we grow older and sometimes, wiser.

-- posted by redback

» tinuviel - informed support

The surgery was 85% successful. The mass they found was not cancerous. However, it wasn't all taken out. Turns out it covered a larger area than they had thought.

It also turns out that the truth about his condition is a mixture of the two previous descriptions we had before. I'm not sure if the mass found on/in his spine caused the bend. It sounds more like the scoliosis itself caused some fluid to become trapped and then to coagulate. So the tumour possibly wasn't really a conventional tumour--if one could use that term.

In any case, the doctor they spoke to turned out to be pretty lenient about the whole payment plan. The surgery is extended to Saturday because of the other 15% of the problem, but no extra charge except maybe the few extra hospital days. So God has been good.

I'll let you know any new information that I find out. Thanks again for your good wishes.

-- posted by tinuviel

» P_Al - informed support

Sounds like it could be better than you initially thought. However we can be more optimistic when the histology comes back (assuming that they thought this was necessary). Keep us posted.

-- posted by P_Al

» redback - informed support

Back in the old days, I'd be reading the reports. But it reminds me of the confusion that exists and the scare that 'cancer' brings to the equation. This would be good feedback to the doctors that what seems a simple explanation may not be understood as wel as it might.

Sounds good about the bill. All the best for the extra surgery. Here, Saturday is already over...8.15pm.

-- posted by redback