Over the weekend Chris and I have been talking about the way the oncologist talked to us both on Friday and in the past. She is very approachable and obviously a caring woman but each time we’ve left a consultation with her we’ve both felt depressed. She has been rather pessimistic at every appointment, refusing to acknowledge that there can be any different outcomes for individuals even though we all know that is the case.
We feel it would have been better if she’d have phrased what she said in a more upbeat way rather than giving out the message in so many ways that I am “Dead Woman Walking.” Perhaps if I’d had a little more encouragement/indication from her that I have a good chance of being one of the lucky ones who would be one of the 60% who survive 5 years (first consultation), one of the 40% who survive 5 years (second consultation) or now one of the people who might live beyond 2 years I might feel more prepared to undergo this next round of chemotherapy than I do at the moment.
I am starting to appreciate more and more that we are more than just a collection of cells and body parts & that we need doctors who can cater for our spirits/souls as well as the body. However, these people are sadly lacking. To some extent they have all (even in this country) got the metaphorical lawyer on their shoulder who is preventing them from providing any hope or encouragement to patients who are left to imagine the worst as I am doing. I don’t know if it’s my imagination that there were days when medicine was an art as well as a science but it seems to me that the science has taken over at the expense of the nurturing of the human spirit which is just as important in both recovery and death.
Elaine, so sorry to hear your news. I have been following your posts but haven’t posted much ‘cos I’m not sure what to say. Others have said it so much more eloquently.
Having worked for both the NHS and private practice in the past, I can honestly say that your experiences of the NHS can be frightfully normal. However, it does really depend on the services where you live. The postcode lottery is very evident. All I have learnt is to always get a second opinion… and a third! Having worked with doctors at close hand, they are not gods and sometimes believe in different outcomes, even those in the same departments.
If you can afford it, it might be worthwhile getting a consultation with a private practitioner (ask around – hospital secretaries are always a good sources of information). Even a one-off consultation can reap dividends. I’ve known people to jump NHS lists as the private doctors frequently work in the local hospitals too and can help expedite appointments, scans or even liaise with colleagues on your behalf. I know it’s pushy and it takes strength but getting other opinions often helps obtain a clearer idea and maybe a few more options.
The most knowledgeable in new medical approaches tend to be the senior consultants responsible for training in the Teaching or University hospitals. In terms of medical advances, 2-3 years is still a long time and will hopefully give you a few more ideas to help you gain some control.
Not sure you realise how your generosity and openness is so inspiring.
Coming from a medical family here in the States, and since I am about to start cancer treatments myself, I have known many doctors, the majority of whom were or are caring and compassionate towards their patients. When you look at such specialties as oncology, however, I can understand why some busy doctors cannot always satisfy the emotional needs of patients and may feel pressed for more accurate predictions than they can responsibly provide. Your oncologist, Elaine, seems to go a bit heavy on the pessimistic side in what is always going to be a tricky balancing act. A policy of “realistic optimism” might have been a better choice, but it does need to square with the data.
Elaine,
I got the impression (from Chris’ last entry) that you pushed her quite hard for an honest assessment . Perhaps it backed the doctor into a corner a bit and the answer came out rather bluntly.
My money is on you to beat that assessment by miles. Just stay determined and get the best advice from as many different sources as possible.
Maybe chat to your doctor friend in a couple of days time.
Andrew