Thoughtless medical practitioners and health professionals

But firstly some recipes

Banana and fruit custard

Here we have photos of 4 baked custards (individual serves) that contained some left over quiche mix of egg and milk, with some fresh chopped banana and date plus some goji berries (note, no actual sugar). These then were baked at about 150⁰ C for approx. ½ hour in a fan forced oven. A lovely healthy desert. And for the main course, please read on.

Custards (sugar free) and quiche

Above is a photo of the quiche and the four custards cooked with some cinnamon sprinkled on top. The quiche is full of vegies such as multiple greens, onion, celery, garlic, ginger, turmeric, bacon, carrot and peas, with of course the egg and milk mix (1 egg per 1 cup of milk), a generous proportion of grated cheese, and the pastry is a simple one with flour, olive oil, some milk and water, well mixed and kneaded. This was cooked at 180⁰ C for approx. 45 minutes. Yum. Some people want me to be vegetarian or vegan to help me recover from cancer, but I have not gone down that path. My diet is mostly plant based, but does include animal products, almost all organic and local where possible. At this stage I can’t find any convincing evidence to make me change to no animal or meat. I’ve had naturopaths, doctors and dietitians support the omnivore diet, and other people support the vego one.

Now for my interactions with the medical profession, some good, some not

I’m slightly furious at the moment. I intended to write about a different topic this blog post but my fury wants some form and outlet, so I write about it now. I am becoming sick and tired of the way I am often treated (note, not always, and especially not by most frontline staff such as the cancer care nurses at the chemo centre, the technicians such as radiotherapists and radiologists, or the various GP’s I’ve had during my treatment). Some health professionals who include some doctors, oncologists, radiologists, surgeons and so on, seem to treat me not so much as a thinking, feeling, sentient person, but as a case, a problem to solve, a challenge, data for research, and part of the picture they are building of the cancer world. They are mostly very good on facts, figures and equations, but it appears to me that some have a good opportunity to further develop their interpersonal skills like communication, active listening and empathy; I feel as though I am a “case” to them that needs to be solved, not a person living with a serious disease, and all the aspects that come with being a person. I as a person have feelings, emotions, hopes, dreams, likes and dislikes; I feel pain and dread, I fear an early death from this cancer, and apart from taking many positive actions to help me beat it, sometimes a sense of horror creeps in. So I go into appointments carrying all of these parts of myself, balancing them and attempting to be in the moment, practical, rational, friendly, nice, cheerful and open. So often I feel as though I get met with blank stares, not a lot of eye contact or warmth, especially from specialists of one kind of another, light on expression of empathy for my situation, rarely any genuine attempts to engage with me on a personal level; often the doctor/health professional does not even greet me with a hullo, or how are you today, or some other kind of human banter or small talk to break the ice. No, I am usually a problem to be solved, and let’s get straight down to business. The NSW Cancer Plan 2011-15 (from the Cancer Institute of NSW, part of the Department of Health) identifies quality of life through enhanced patient centred care as a priority goal, which is about improving the response to the needs of people affected by cancer, and includes a special provision for achieving this in rural communities, which is where I live. This focus on the patient as the centre of care is to be evidence based, and I’m not sure what this actually means, but I am looking for how to provide such evidence, for example: does the approach to people with cancer that I have outlined above happen often to many people, and how does this affect them and their outcomes? In a nutshell, if I feel devalued and depersonalised, does this affect in any way how I live and manage the cancer that is trying to overpower me? The person with cancer, who is seeking treatment and advice from the medical specialist, often comes to the encounter with the medico from a position of powerlessness and the doctor is in the position of power. We go there as supplicants, seeking a cure from, we hope, this all powerful shaman who has the keys to heal us from our disease. They possess the secret knowledge that we require and we very often put ourselves at their mercy and do almost anything they tell us to, hoping that perhaps this one will work this time, even though we know that the statistics mean that it doesn’t help everyone and usually the side effects from the treatment can seem worse than the disease itself. But we put up with all of this because we are desperately hoping for the miracle that could come our way. So, really, we go there in a very vulnerable position and can easily forgive them for their apparent lack of caring about who we are, what our life is like, how we cope and how our relationships are with our loved ones and carers and so on. We readily find excuses for them, such as trying to understand what it must be like to be an oncologist, seeing people every 15 minutes, dealing daily with pain, suffering and death of these people and their families. Is it any wonder they don’t want to get too close, some of it must be to protect themselves from the perhaps very real potential of being affected by vicarious trauma through being close to so many people who directly experience the distress that cancer can bring. So, let’s cut these people some slack, but still allow ourselves to dream the beautiful dream: what would it be like if they were more empathic, were friendlier, were more civil and displayed at least a modicum of manners? I think it would be nice, but how can we get this to happen? Are these skills developed during their professional training and regular professional development, or are they left up to chance? I’ll give an example of what I mean, it is the most recent one and the one that has almost tipped me over the edge of nudging the oncology model right out of my life and seeking alternative methods – note, not complementary, but alternative, less intrusive, more empathic, more caring, if that is at all possible. Currently I use a mix of allopathic (i.e. medical) and complementary (herbs, meditation, exercise, diet, energy, relaxation etc). I find the complementary mostly to be edifying, help me feel well, enjoy life and improve my quality of life, and I find the medical very often to be extremely invasive, painful, make me very sick and weak, and really challenging to my enjoyment of any quality of life. Yesterday I was booked in for a couple of scans, a Doppler (ultrasound) to check the progress of my blood clot, and a CT to check the progress of the tumours. The radiologist conducting the Doppler was great, friendly, helpful, direct and efficient. He informed me that the blood clots are still there with quite a strong presence in my neck in the ‘right internal jugular vein’. The clot is in the low pressure side of the blood circulation system, in the part that drains back to the heart, not pumping out from the heart. He explained that the blood vessels are a bit like a river system in that if one channel becomes blocked or restricted, the blood finds and flows through other tributaries, or even makes new ones. Anyway, moving right along to the CT scan, which is where it all arced up a notch or two. It seems that for the CT scan to show up tumours accurately the person receiving the scan needs to have some dyes put into their system that help different types of tissue contrast with each other, highlighting tumours. I was starting to get nervous because in the past I always needed an injection of a dye into a vein, and increasingly over the last 9 months or so it was becoming more and more difficult to find such a vein that would work, meaning I got stabbed and punctured several times before striking blood – and this has been very disturbing for me. While I was in the waiting room a person came out and asked me to drink this liquid to help with the contrast in the scan, without any real explanation of what was happening. So I thought, bewdy, perhaps there won’t be a needle this time, they’ve replaced it with the drink. Phew, relax. When it was my turn for the scan and I’d drunk the liquid the radiologist/technician who came to get me was very kind, friendly, chatty and tried to make me feel at ease. When I got into the room with the scanner, she mentioned that she would have to give me an injection of the dye and have I ever suffered any bad side effects from this injection. No, I replied, but the only thing is that it is very hard to find a working vein in which to squirt this stuff; she was pretty nonchalant about this and said that she’d only try twice, and if no luck she’d call in the doctor. This didn’t really convince me much, but I thought I’d give her the benefit of the doubt; she tried in my crook of arm first, a dry well (even though I told her that no-one had got any out of there for quite a while). She then looked at my other arm, felt around and decided it might be better to get the doctor before she tried again. I thought, phew, perhaps the doctor is better at this (or I hoped as some doctors are not that great at it). So in comes the doctor, a doctor of radiology and the chief radiologist on duty. He didn’t look at me, didn’t greet me, just walked over, grabbed my arm and starting poking around and tapping – I’m starting to get a bit uneasy. He couldn’t find any real prospects in my forearm, so started looking at the back of my hand (okay I thought, Julie the blood collector, uses the back of my hand and she is terrific, getting it first go every time and hardly hurting at all). Well, this doctor starts plunging a needle in and it’s pretty quickly really painful, a quantum more than any other blood fishing expedition, and I instinctively let out a loud scream with some quite voluminous swear words attached. He says that it’s not really working, so pushes the needle in further, and I scream more. He almost yells at me to stop fighting him and I try to relax. Going deeper didn’t help, so he pulls the needle out, but exclaims that he’ll try again, and repeats the performance almost in the same spot, but trying even deeper this time, and I’m really letting them know that this is too painful. When he fails to find blood, he says okay we’ll do the other hand. Actually, he did find some blood as it dripped over both sides of my hand and onto the floor, enough for him to require the assistant to get him some cloths to wipe it up; however this type of blood flow is not what he was after. I thought for a split second and said, No, that’s it, I can’t stand this anymore, you can’t try again. He just glanced up at me, realised I was serious, looked away in disgust, and walked out the door, without any goodbye, hullo, sorry about that or anything, any acknowledgment of what had just happened. Meanwhile, the technician seemed pretty embarrassed about all this, and tried to reassure me that I had done really well, things would be okay and so on, as she put a massive plaster and cotton wool over the wounds from his poking. Then she told me that anyway, the dye I drank would probably create enough contrast for them to do a successful scan and assessment. What did I learn? Don’t let them stick needles into me and always seek an alternative; often there is an alternative but they don’t suggest it to you as they use the easiest method first (well, this is my working hypothesis). I was very upset by this, and remained so for days. It set me back in my positivity and quality of life. I think this situation could have played out much better for all of us if at least one of the following things happened:

• I told them from the beginning that I wouldn’t be having a needle, perhaps even starting with the oncologist who ordered the scan; or,
• The doctor had a reasonable bedside manner and spoke to me as one person to another in a civilised manner; or,
• When I told the technician that it was hard to find veins she would have taken me more seriously and negotiated a way forward; or,
• Either of them was sufficiently skilled (like Julie from pathology) to be able to find a vein in such a person as me.

In all the above scenarios, I as the “patient” have the least amount of power and am under pressure to conform to what those in power have set out for me. It would be nice if they took the lead and came to the encounter trying to understand my point of view and my goals in my cancer recovery plan. It is a shame that I have to lead by example and teach them how to behave towards me by mirroring that behaviour in the way I treat them, but this puts a lot of pressure on the sick person, perhaps an unfair amount as they are the ones least able to take this kind of lead in this power over situation. I wonder why the complementary methods I use, on a self assessment scale, seem to improve my quality of life, and the medical model does not and in fact severely challenges quality of life. Could it be related to the efforts I have put in to research the complementary, to seek out modalities that suit me, that I like, and that seem to improve my health, vitality, energy and zest for living? My positive actions are mainly geared to doing things that improve my quality of life and my chances for survival, and these actions help me to have a positive attitude to my life, making the most of it as it unfolds. Undergoing radiation and chemotherapy are part of this mix, but so often the medicos I meet in this realm do challenge my positive approach, by somehow not tapping into it, by not engaging much with me as a person, by almost not seeming to care. I don’t know what this is about, and I’d love to know. Anybody got any ideas?

Results of CT scan

I only have preliminary results so far, and they seem to indicate that the tumours are no worse, but it will be a couple of days before the final results are in, as they forgot to compare them to the previous scans that I have had. Also, not having the needle meant that the tumours do not show up as easily. So here’s hoping that the results confirm the preliminary and that the tumours are at least no worse, or even smaller/less active.

Next chemo – round 5

Today I go into the hospital to have the next day long infusion of the chemicals plus meet with the oncologist. Let’s hope this goes well; it usually means that I get pretty sick for about 4 or 5 days, so I’ll keep you informed after I surface from this chemical induced haze. Keep well all of you, Phil