Monthly Archives: December 2011

The Cost of Health

So, today we saw the surgeon, who, contrary to the information available about him on-line, was very helpful, very informative and very happy to spend as long with us as we needed. He’s arranged for surgery tomorrow morning to take a biopsy, though I suspect he may well remove as much material as possible at the same time so that any future chemical treatment has less to combat. On that basis I expect to come home tomorrow with a hole in my neck, a large bandage and lots of pain killers.

Once again I’m not sure how I feel about all this. On the surface I seem, and feel, calm, and yet this afternoon I found myself really snapping at my wife over absolutely nothing (and yes this is a public apology!), so, clearly, though the surface might be calm, there are swirling currents beneath and I’m not sure about their speed or depth.

What I did find difficult today was the physical distance from my daughters. Explaining something like this over Skype just isn’t enough. I couldn’t talk to my youngest daughter as she was out for the evening and leaving a message with her husband really isn’t the same thing at all – I’ve spent the past few hours imagining how she will feel when she walks in smiley and happy to be confronted by this. Talking to my eldest daughter was possible but it was hard to hear her tears when I am not able to physically reach out to her. What I do know is that both my daughters will be rooting for me and wishing they could actually pop round and visit to cheer me up but, that’s just not a possibility with 4,500 miles between us.

Today is the day on which the failings of the US medical health insurance process really struck me hard. Our insurance policy leaves us to pay 10% of the cost of doing this and I can only guess that it will get worse from here on in as, next up, assuming the biopsy shows cancer, is a specialist scan with radio-active material to check out my heart and then the injection of material directly into my bloodstream with the aim of killing the cancer. I am beginning to understand why people make the decision to forgo treatment for themselves in order to have money available for their children. It’s an invidious position and no-one should have to go through it.

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Why aren’t things more straightforward?

So, there we were, my wife and myself, sitting with my hematologist and proudly telling him that we’d already arranged to see a surgical oncologist to get the biopsy which my hematologist wants me to have when he asked who we were going to use. “Oh, no,” he said when we told him. “That’s no good, Jamie’s like me. I do bone marrow biopsies but not something like this, you need someone else.” So, all those hours my wife spent on the web researching surgical oncologists, all those phone calls to their offices to check whether or not they would do a biopsy, all those careful explanations that this was a biopsy of swellings on my neck, and still, still, we get put onto the wrong man! Amazing. I really think the NHS would do a better job of getting it all together, and I’m pretty sure that if the Tories get their way then the NHS will increasingly start to follow the US model, and I’m not sure that for patients that is a good thing. For instance the hematologist wants me to have a particular scan, I think a PET scan, but the insurance company will not authorise that until the result of the biopsy is known and “we know the pathology”. Surely that is wasting time, which may or may not be valuable, in order that the insurance company is able to return a bigger profit to its investors, although, from the look on his face, the hematologist’s pretty sure of the results, so the insurance company is likely to end up paying for both and therefore making a lesser return to its investors. Great isn’t it?

Am I any nearer getting to know what is causing my particular lumps and bumps which are so near the surface that the hematologist commented that my wife could probably “pop” out a node on her own without seeing a surgeon? No, not really. I think today kind of confirmed what the ENT doctor said, though my wife, who heard exactly the same words, has taken a more pessimistic view of what we were told. It seems that, if it is a cancer, it will fall into one of four groups. Two of those groups are treatable and probably curable, one of them doesn’t respond to treatment but may not be life-threatening in any immediate sense and the fourth group falls somewhere between the two points.

How do I feel about all this? Still a tough one to answer I think. On the surface I don’t yet have anything to think about as there are a range of possibilities from the lumps being benign, as it seems I don’t present other symptoms which would be associated with the cancers, through to them being caused by something aggressive and incurable, and, intellectually at least I think I’m prepared for it being the worst possible news. How true that is I’m not yet sure as there are times, some short and others much longer, when I just don’t want to have to deal with anyone else. Sometimes at the start of these periods I feel really selfish, particularly towards my wife who is giving me fantastic support, but more often I don’t get that feeling until after I’ve taken my “my-time” and I realise that she’s been left to deal with the emotional side on her own at a time when she wants to give to me, not only because she loves me but also as a sign that she believes I will come through all this and be well again. I suppose what I’m saying is that I know I am largely screening out my emotional response until I know just what it is I have to respond to, and that I’m aware that there is a real possibility that the emotional response will burst through, perhaps in a barely controllable way, at some point.

Anyway, tomorrow, or rather today as it’s now the wee small hours, I go to see the doctor who will perform the biopsy for an initial consultation and in the expectation that he will do the biopsy within a week or so. I also need to have some measurements made of the strength of my heart muscles – the doctor cautioned not to worry if I got a low score as 100% generates a score of 60 but I do wonder why that should be the case. I forgot to ask why I needed that test but from looking at the prescription it looks as though the doctor has written “chemo” (if doctors are clever enough to learn everything they need to learn, and dexterous enough to perform delicate operations in a confined space with a sharp instrument then why can’t they learn to write neatly? – as Terry Wogan was wont to say “Is it me?”). So, does the word “chemo” indicate that this doctor is of the opinion that I have a cancer which will need to be treated with chemotherapy, is he just getting all his ducks in a row or, even if the lumps are benign, will they be treated by chemo? I don’t know. I didn’t ask and neither did my wife. Even though we knew that the news might stun us we’d gone there with the intention of not letting anything pass without asking about it, and yet we missed this. Not the doctor’s fault at all as he asked several times if there was anything we wished to ask and when we did ask something he was able to give us a good clear answer. It just goes to show how focussed you have to be in these situations, and how easy it is to allow yourself to believe that you understand what is and has been said to you, when, in fact, you are simply riding along with the words. Amazing really.

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Why does bad news often come at festive times?

I’ve often thought it strange how bad news, such as a loved one’s death, the loss of a job or serious injury, comes at a festive time, be that Christmas and New Year as now, another calendar event such as Easter, Halloween or Bonfire Night, or perhaps proximity to some family date such as a wedding anniversary or birthday, so that every year for the rest of your life as that event rolls around you are prompted to remember. This year the bad news for me came a week or so before the Christmas holiday.

A routine visit to a doctor for a check up. Routine in the sense that everyone should have one, far from routine in the sense that this is my first in a number of years and my first with a Primary Care Physician in America. It was going swimmingly to start with. Questions such as “What medication do you take?” were answered with “None” much to the seeming surprise of the intern asking the questions. I was tempted to think that maybe she’d never had anyone say “None” to any of her questions before let alone to all of them! Then the first hint of bad news when she moved her left hand back to take a second feel at my neck and said “You have a bit of a lump there”. “Yes, I’ve had it a long time, it comes and goes”, was my confident, almost flippant, reply. A short while later the doctor came in and homed in on my neck, saying the lump was about 3cm to 5cm in length. Mmm! Clearly this wasn’t the small spot I was thinking of! My wife began to turn pale. I’m not sure what happened to my face though I do remember thinking it was important for my wife that I didn’t look too worried. In response to my wife’s questions the doctor said at best it might be fatty tissue which had settled there but it might be something malignant.

Now, I’m new to all this, both the having cancer part and the dealing with the American medical insurance process, so I knew I would have to rely upon my wife for practical help as well as emotional support. The doctor suggested that we see an ENT specialist with an organisation which she recommended. My wife told her that that organisation was not an approved institution on our policy, and that the doctor would need to speak to our insurance provider before anything could happen. The doctor said she (the doctor) would need to put things in writing and would send a fax to the company she’d named. Once again my wife pointed out that the company was not on our approved list. The doctor went on to say that, depending on the ENT opinion it might be necessary to take a biopsy, and that, as they say, was pretty much it, apart from taking some blood and giving me the results of the EKG which seemed to suggest that at some point I’ve had a heart attack and not realised it. The PCP also wanted me to have a CT scan on my neck.

All of this happened late on the Thursday afternoon, a week before Christmas. My wife, being experienced in the ways of health insurance companies phoned ours when we got home to check whether or not the PCP’s suggestion were on our approved list. They weren’t. My wife phoned the doctor’s office on the Friday but was only able to leave a voicemail – no-one called us back. Before the end of the day my wife spoke with the insurance company again to ensure that they had received the information they needed from the doctor – they hadn’t. Saturday saw us in the doctor’s office where the doctor, somewhat glibly, told us that she had no idea what the insurance code was (our insurance company had asked for this when my wife phoned them) as her staff dealt with that so she couldn’t give it to us, but she would ensure the fax was sent to the insurance company. My wife again told the doctor that the company recommended by the doctor wasn’t on our plan and that the doctor would need to talk with the insurance company for things to move forwards. Saturday night came, more calls to the insurance company and still nothing had happened. Frustration levels were rapidly rising in our household. Not only did I potentially have life threatening cancer, not only were we trying to come to terms with the emotional side of trying not to contemplate my impending death a few months after we had married following a trans-Atlantic relationship of almost seven years, but we were also trying to understand why a doctor who was being paid to be my Primary Care Physician seemed not to be taking much action to ensure I got care. Sunday was a dead day so far as we were concerned. Monday morning dawned and the doctor’s office opened at 9.00 a.m. At 9.01 a.m. my wife was on the phone once more demanding that the doctor’s office make contact with our insurance company. The matter of contact was becoming more urgent as my wife had arranged a visit to an ENT specialist for Wednesday on the basis that my PCP would have given the insurance company all the information it needed and the insurance company would have had three or four days in which to complete it’s consideration of the position. The insurance company was now saying that it couldn’t guarantee having a decision, let alone an approval, in time for Wednesday morning. Tuesday dragged itself along. Contact with the insurance company was so frequent that staff there actually recognised my wife’s voice! The insurance company’s answer eventually changed from “We haven’t received anything” to, “We’ve received a fax but we need the PCP office to telephone us”. By now the PCP office was closed but the voice mail wasn’t so my wife again left a message. Tuesday morning arrived and saw us at the PCP’s office demanding that the PCP telephone the insurance company. The PCP was adamant that there was no need “They need it in writing and I’ve sent them a fax” was the sort of comment she was making. Eventually I started talking about negligence on her part and then, and only then, did she say she would make the phone call. Did we believe her? You bet we didn’t! We waited until she said she had phoned, and told me my blood tests were ok, and then we went home and phoned the insurance company to make sure they really had got everything they needed. My wife phoned them several times during the day to ensure that everything was being processed and eventually they gave an OK.

Wednesday morning saw me go for my scan. Once again pages of information from me – does no-one use databases over here? A really helpful technician who told us it might take twenty minutes or so before he would be able to give us a copy of the scans but did it in about five. He explained the report could not be made until later when the radiologist had reviewed the scans.

Wednesday afternoon saw us visit the ENT specialist who proffered the opinion that the multiple lumps were not really an ENT issue and recommended we see a hematologist who would be able to arrange for blood tests which would identify the now “multiple lumps” with my big one having grown to 5cm to 6 cm. So, depending on the accuracy of the two doctors, my lump might have doubled from 3cm to 6cm, or just grown a little bit, or perhaps not at all. The ENT specialist did suggest that although the lumps might be malignant he thought they probably were not, but the hematologist would be able to give a diagnosis following receipt of the blood tests and a biopsy. I bet, like us, you are now thinking, if this thing can be tracked by blood tests why hadn’t my PCP ordered them when she did the others? Good question – I wish I had an answer! Anyway we were soon back home and ready to phone the hematologist recommended by the ENT specialist when our PCP phoned to say she’d heard from the radiologist to say there were “multiple masses” and they may be significant. The PCP now suggested we visit a surgical oncologist, in order to have a biopsy (as she’d previously mentioned the possibility of a biopsy you might have thought this would have been a definite recommendation to start with rather than a possibility after the ENT consultation. I share your opinion.), and made a recommendation. On checking out the specialist recommended by the PCP my wife discovered he’d had a sanction or some such and had paid out one unspecified claim in the sum of $250,000. Not a small sum so presumably a big mistake. Our faith in our PCP fell even further. My wife started phoning round to set up an appointment with a hematologist who could also do the biopsy as we didn’t really trust the PCPs suggestion and the ENT specialist recommended hematologist is on holiday for Christmas and although other capable doctors are available to see me there is no-one to take the biopsy. So, more phone calls then and a lot of internet research and a lot of cross-checking with our insurance company to see whether a particular doctor is or isn’t on the approved list as the lists available over the web aren’t actually up to date – does no-one use a database? Eventually my wife found someone whose reputation satisfies us and who is on the appropriate list, naturally we can’t see him until after the festive period, so our fears continue to grow, and assuming it takes a few days to get the results of the biopsy it is likely that another two weeks will have slid past with both of us feeling my neck and asking “Is it any bigger? What do you think? Is that really what you think?”

My wife has done, and, I’m sure, will continue to do a fantastic job of chasing and harrying in order to get me the best treatment we can, but for the first time since this news hit us out of nowhere, she is now impotent to arrange anything further and has no release for the stress and fear which build up in her, sometimes on a moment to moment basis. As for me. well, what can I say? Am I frightened of dying? At the moment I’m hoping not to die so in some senses my answer can only be speculative, and no, I don’t think I am frightened of death. Don’t get me wrong, I do not want to die yet, and there is much in this world which I would like to experience more of, my wife, my children and grandchildren, friendships, glorious sunrises and sunsets etc., but if the death itself is relatively painless then I’m probably OK with it if there really is no alternative.

What am I learning from all this? Well, medicine in the USA seems to happen faster than under the NHS but I think, perhaps, that is appearance rather than substance. Had my wife not harried and chased and then harried and chased again we really wouldn’t have made a great deal of progress. I’m also pretty sure that had we been unable to be assertive with the insurance company, unwilling or unable to challenge and pressure our PCP, or lacked the confidence to set up appointments in advance of the insurance company actually giving an authorisation then we really wouldn’t have made a great deal of progress. I keep seeing items on the news that around 50% of Americans now live in poverty as well as huge numbers without any insurance and I wonder how they could have dealt with the practicalities of dealing with something like this. Those people who have had their homes repossessed when the company which employed them folds, and who are living in motel rooms provided by charities must already be mentally and emotionally close to being overwhelmed, and as for those even less unfortunate who have no accommodation at all how on earth could they be expected to work their way through this minefield of apparent self-interest and lack of co-ordination. I read today that those on the streets of Britain die 30 years younger than those with a home. It’s not really surprising is it?

So, where does all this leave me right now? I don’t know really. I know the stress levels in the household have, at times, risen almost vertically, I also know that the stress has brought my wife and I closer together, but I’m already discovering that I need time alone, time away from other people so that I can just concentrate on me, on what I am feeling, and work out how to go about the rest of the day and I’m sure that this in itself is also capable of pushing the stress levels higher. I’m also sure that I’m going to have to keep on leaning on my wife and that she will be there for me no matter the cost to her. It really is good to know you are loved!

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