Silly o’clock musings

Tonight, or rather, at silly o’clock this morning, I feel the need to write, to explore myself and try to make sense of the last two or three days; writing helps me with this, well usually it does!

Today, or rather, as it’s silly o’clock, yesterday, was shite, undoubtedly one of the worst days of my life and, considering I’ve come through cancer and chemo that’s saying quite a bit, although there have been other very bad times in my life.

As I tried to work it all through in my mind before opening up my laptop it felt as though what I wanted to say was that I felt the universe was once more mocking me. That’s a very egotistical stance to take really isn’t it? Little me. Just one insignificant coming together of flesh, blood, bacteria and chemicals spinning through the void with billions of others on an insignificant planet far from the center of the galaxy let alone the universe. Why on earth (if you’ll pardon the unintentional pun) should the universe be remotely interested in me? It isn’t really, and I know that, but then most of us laugh at the person who slips on the banana skin without having the remotest connection with that person or interest in their life; when I say I feel the universe is mocking me it is that kind of relationship and not one of personal interest in me. In trying to work my way through this I wondered what I meant by “the universe”, and I couldn’t really answer my own question about my own thought. I don’t mean the cosmic, physical universe. I don’t mean some universal entity, godlike or otherwise. I don’t really know just what I mean which is really a bit scary as it is my own thought!

I remember as a teenager being invited to the party of a teenage girl, Lynda, who was a neighbour. There were a group of us who mostly knew each other. The girls wanted to play a game called scissors where the players said either “open” or “crossed”. The girls knew how to play but we boys didn’t, we could have explained the off-side rule but couldn’t understand what the rules of this particular game were and the longer the game went on the more frustrated we became. Occasionally we guessed correctly but knew that we’d guessed so it was no help at all when our next turn came around. The more frustrated we became, the more the girls giggled in delight and showed that they relished their superior knowledge. Right now, at silly o’clock that’s how I feel about the rules of life; every time I think I have worked them out and can rely on that “knowledge” to look ahead, they seem to change and I just can’t get my head around them. If there has been a pattern in my life it seems to have been this, that every time I start to make plans in the expectation of continuity they get blown out of the water by “the universe”. OK, maybe it’s not the universe, maybe it’s just me screwing things up when I really want them to go well; it’s a possibility which has to be acknowledged.

Was it worth coming through cancer to feel as I do now? Good question! I know human life is precious, but, the way I feel right now I really do wonder. Please don’t get the idea that I feel suicidal, I don’t and I won’t, but I really do wonder whether it was worth everything that it cost me and those whose love, particularly that of my wife, got me through it.

Does any of this make sense? I don’t know. Has it helped me to get my thoughts together in this way? Maybe. Maybe not.

The rules for the game at Lynda’s party? Really simple. If you sit with your ankles crossed, you say “crossed”. If you sit with your ankles uncrossed you say “open”. If only the rules of life were as easy!

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Goodbye Tomas

Today, or, rather, yesterday as I’m writing this at silly o’clock on a Monday morning, was a tough day. It was a tough day because I received a message that one of my students, Tomas, had died from cancer. At age 14 years his life ended. After 14 years his parents and sister went home to a home which probably felt more like just a house; a home which would never again hear Tomy’s dry sense of humor or see his shy smile; nor would they ever again experience the delight of living with this brave young man who, for several years, knew that he was almost certainly fighting a war against cancer, a war which, ultimately he expected to lose and, yet, he continued, so far as his treatments would allow, to fully enjoy the life of a teenager.

**********   If you are religious you should probably stop reading at this point.   **********

 

**********   Really, you should probably not have got to this warning if you are religious   **********

I imagine that you, like I, read Facebook; that you, like I, have “friends” on there who are God-fearing, upright citizens who post religious things. Last week someone posted something along the lines of, “Thank God for all the brightness in your life. Thank God for all the happy memories. Thank God for all the good things in your life”, and so on and so forth. My question is simple, if you thank God for all the good things in life, then who should you thank for taking away the life of a child? Not just Tomy’s life, but the lives of all the other children who died in the last 24 hours, who will die in the next 24 hours and so on until this world ceases to support life? If you really thank God for all the good things; if you really thank God for taking a personal interest in your well-being, then should you not also thank that same God for taking the lives of innocents like Tomy who actually was part of a religious family, should you not also thank that same God for all those who die from floods, hurricanes, tornadoes, tsunamis, volcanoes and other “natural” disasters? Should you not also thank that same God if you are one of the homeless sleeping rough who lost their home and family when some corporate banker made a decision which wiped out a company employing that person? Should you not also thank that same God if you have been raped, abused or violated in any way? If this God takes such a personal interest in you why is that He failed to take a personal interest in all of those other people who have been badly effected by events in the last 24 hours and those who will be in the future? Did they do something wrong? Were they all people like me, people who thought there was no such being as a God who really takes any interest in what goes on in the universe let alone on this small and relatively insignificant world of ours. Were none of those people “good people”? Did none of those people believe in the same God that you do? It’s surely impossible to believe that everyone who has died prematurely or in pain or had their lives adversely affected is a “bad person” who is irreligious isn’t it?

On my way to fetch my car from the bottom of the street I composed a poem for Tomy, not a poem of bitterness, nor a poem of is there a God, but a poem of my pain and disappointment at not seeing Tomy go on to a full and mature life as, in my opinion, he fully deserved to do. I would love to publish that poem here, in my blog, but I can’t, at least not yet, as I am currently on a course which requires that I publish, in the course book, a piece of my own original work: my poem for Tomy will be that piece of work replacing the one on which I had previously worked. Maybe I will be able to publish it here later. I hope so.

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Us Health Care Costs

If you’ve read much of my blog you will know that I am from England where health care is free at the point of delivery, it is not free, people pay a tax so that when they really need health care they don’t have to decide whether or not to see a doctor and lose their house in fees or to accept that they will die earlier than they would if they could afford medical care. You will also know that when I got diagnosed with Hodgkin’s Lymphoma I was completely baffled by the US health insurance system with people talking about co-pays, deductibles, in-scheme and all sorts of other words and phrases I’d just never come across. Without my wife doing everything for me I couldn’t have navigated my way through the maze because, along the way I discovered that there were several billing mistakes which had to be rectified, and, wouldn’t you just know it, none of them were in our favor.

This week I got another shock from the industry known as U.S. medicine and health care. I saw my surgeon for a pre-op meeting so that he could ask how long I’d had my port in my body, prod it a couple of times, speak to the two trainee doctors who trailed around after him and then shake my hand. At the maximum he spent 8 minutes with me; his receptionist somewhat less and I’d already seen the guy who arranged the surgical appointment. I’d payed my co-pay when I was in his office and then, this week, I received an invoice for $485.00, the remainder of his fee after deduction of my $50.00 co-pay. The letter did threaten that “If this matter is not resolved in a timely manner, serious collection activity may be initiated:. Naturally I spoke to my insurance company but I ended up passing the phone to my wife as I couldn’t make head nor tale of what the insurance company wanted to know let alone what it had done simply because none of the figures they were giving matched with the ones I knew of. It turned out that the reason none of the figures matched was because the deal between my insurance company and my surgeon means that instead of receiving $485.00 from me he actually received just $90.00 from my insurer, that’s right, a reduction of $395.00!!! I find that amazing. Either he’s now working for next to nothing or his office has bloated the fee to a standard which is acceptable here in the U.S. To some extent it doesn’t affect me as I have insurance, but, if I didn’t have that insurance, I’d now owe nearly $500.00 when the physician group would have settled for less than $100.00. It seems reasonably obvious that one of the two main groups which don’t have medical insurance are the poor and unemployed and yet it would seem that they are likely to get hit with a bill almost 500% larger than the bill paid by an insurer. Yes, the U.S. clearly wants to take care of the poor and impoverished who have turned up on its shores.

I read and hear a lot about Obama care, and while I think it is better than nothing, it doesn’t go far enough. The U.S. needs to stop worrying about socialism in medicine, about government interference in making people take out medical insurance, it should, in my opinion, and I realize that I am only a guest here, move towards a system such as that in the UK, where people are taxed to pay for health care, surely the government can’t object to taxing its citizens can it?

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Out at last.

Yesterday my port was removed. I expected to feel different, as it had, after all been a physical part of my body now for more than a year. I have grown used to feeling the bump beneath my skin, of seeing the lump sticking out through my t-shirts like some enormously puffy third nipple on a particularly cold day, and now, it’s gone! Gone just like that. Well not quite so easily as the US health insurance industry threw in a couple of curved balls along the way . Having managed to negotiate all the obstacles placed along the way I have to say that the actual process went by really smoothly from my perspective. The nurses who worked with me at Memorial Outpatients in Hollywood, Marissa, Vivian and Sue were great and kept me amused, while in the OR Dr Eckstein and his team got on with things without me knowing anything about it until I came around. As I said I expected to feel different, this is, after all, a significant moment  as the last part of my chemo treatment is removed. Strangely I don’t feel different, I don’t feel elated, I don’t really feel anything about the port going except somewhat sore and a little curious to see whether or not I have another interesting scar to match the one on my neck from my biopsy.

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Play to Cure – Cancer Research UK

I came across something on the BBC website recently which made me want to check out a game app from Cancer Research UK designed to help crack the cancer DNA code. Here’s the link http://www.cancerresearchuk.org/support-us/play-to-cure-genes-in-space

 

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The US Health Insurance Arrangements Suck

Those of you who read my previous blog will know that by now I should have had my chemotherapy port removed. Those of you who are astute readers may now be inferring that I still have it firmly in place and that this is so because of health insurance. My astute readers, you are correct.

From coming to the US the entire health insurance set up has been as clear to me as London smog. Co-pays, deductibles and so on were notions which were so alien to me coming from England with the NHS to which we all contribute and which is free at point of service. I always thought that to be a great scheme and think it an even better one now that I have experienced the US system. Since arriving in the US I have been on my wife’s health insurance, for which she pays a small fortune because, obviously, if I claim under it she is still working so the health policy won’t lapse, whereas if she claims under it for anything serious there is every chance that she might not be able to continue working and the policy would lapse thereby meaning that the insurance company’s responsibilities would be terminated and liability limited. In September I completed application forms for insurance through my employer and subsequently discovered that my insurance had been backdated which meant that we were not able to cancel the insurance I had under my wife’s policy as they require 3 months notice to cancel or some such. This has meant that I have had double insurance.

When I went to the outpatient center for my port removing this became a problem as the Center told us that they couldn’t accept the insurance under my wife because that wasn’t my primary insurance and we couldn’t use my own insurance because the doctor wasn’t on my insurance. The consequence is that the surgery was cancelled, I still have my port and now we are concerned in case this revelation means that the insurance we had used will now be cancelled retrospectively and we will be billed for the cost of things such as my CT scan.

American health care is good, the NHS is good, the difference is that people in the UK don’t have to sorry about how they will pay for health care when they are ill, neither do they have to spend hours worrying about which policy to select by trying to predict a year in advance just what health care they might need in order to find a policy which will cover them if that happens without having to pay out a large proportion of their income to cover events which they consider to be unlikely.

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Almost two years ago…

I have a strange feeling tonight as it is almost exactly two years ago since I was waiting to go for a biopsy to confirm that I had cancer, and tonight I’m waiting to go for surgery tomorrow to have my port taken out. It’s a strange feeling because in those two years so much of my life has changed. Two years ago I was newly arrived in the U.S. and awaiting confirmation that I could become a resident – there’s a certain synchronicity here as I’m now awaiting confirmation that I may become a permanent resident, without a job whereas now I have been working since August, and a U.S. medical system virgin whereas now I have had a lot of experience of said medical system, in so many ways I am now a very different person to the one I was two years ago. It’s also strange because I have been waiting to update this blog for quite a few weeks, since I got the all clear on my last CT scan and knew the port would be coming out, the delay was caused because at the time I got the all clear I discovered that one of my blogging friends http://keepthecalm.wordpress.com/ had died and, although I’d never met Jen in real life, I had derived a huge amount of support from her intelligent and insightful blogs: I found it difficult handling my own and my family’s feelings of joy at my news with my own sadness and the heartbreak which Jen’s family must have been feeling. That’s a conflict I haven’t yet truly come to terms with in my own mind, other than to accept that life goes on, but tomorrow, as I make my way into surgery, I will be thinking not only of Jen but of all the others, who unlike me, didn’t successfully make it to the far side of this disease. I’ll also be thinking of all those who supported me, not only my wife and family, but also the blogging community, friends, and, now, colleagues as well.

My wish for the New Year is that 2014 is the year in which those dedicated to destroying cancers will be successful on an unprecedented scale.

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