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!


Leave a comment

Filed under Cancer

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s