Life After Cancer – Now

When I was 31, I went to a dermatologist for a reason I can’t remember now and during the course of my visit, she took a close look at the moles that dotted my physical landscape. There was one in particular that looked a bit iffy to her and she said that it might be problematic in the future. Her suggestion to remove it to avoid an issue later was re-adjusted after discovering the limitations of my insurance coverage.

With a husband in a Ph.D program, we were lucky to have any coverage, even the bare bones policy he was able to get through the University. It did not cover mole removal that ” might ” be a problem in the future and as I was working a job that provided no health insurance and frankly not enough money to spare for the out of pocket costs involved in the procedure, I walked out of her office thinking I would just keep an eye on it.

Even though I was concerned, the pressures of a husband in graduate school, the needs of a young child, and the struggle involved in trying to pay for what was a very lean living, I looked at the mole a time or two and then forgot about the spot I had been warned to watch. Had it been in a more obvious place like my face it would have been easier to see the future before it happened.

By 33, I was divorced and struggling to build a career in pharmaceutical sales while juggling parenting roles and the early beginnings of a social life as a single woman again. I was also unknowingly on the edge of something bigger than I had ever faced. On the morning of Christmas Eve, I felt a strange compulsion to check the mole I had not thought about for months. I was rushing around trying to get ready for the evening ahead and the next day with all of the places my daughter and I would need on be Christmas Day when I suddenly felt compelled to stop and look at the spot on my back.

After twisting myself into a position I where could see the shaded place on my shoulder in the bedroom mirror, I found that I needed more light to see it properly and went into the only bathroom in the house to try to get a clearer look. Standing on the toilet, I twisted myself once again so that I might see my reflection in the mirror of the old medicine chest on the wall.

I knew in the moment I saw it that I was looking at cancer. That’s a melanoma, I said to myself and wondered who I might call. No one was taking new patients that day and I could not be seen by a physician until a week into the new year. The doctor who saw me would not commit to a cancer diagnosis and seemed to take it off just to give me some peace of mind almost going so far as to suggest it was probably nothing.

I was standing in a phone booth in south Georgia a few days later when I got news. Having called the office to find out the results of the biopsy, the receptionist unknowingly gave me the results when she said, ” We don’t know yet, they’re checking it for levels.” I knew enough even then to know that if they were checking it for levels then it was not going to be good  In 1994, I had no cell phone or internet access and I even though I had known intuitively what I was seeing on the day I found it, her words scared me so I could not think clearly beyond asking the woman on the phone to please have the doctor call me as soon as possible. I was barely in my car before my pager went off and when I called the office, my doctor said, ” I don’t usually do this over the phone, but it is malignant and we should know what level we are looking at within about 24 hours.” I kept it together while we scheduled a office visit to discuss the results and she finished by saying we would talk when I came in about what our next steps would be.

All work for me stopped at that point even though I tried to go on with my next sales call. I left the office before seeing the doctor unable to stay focused on whatever drug I was there to discuss. During the two hour drive back to Marietta where I lived with my daughter, I worried the whole way about questions with no answers and stopped at the first library I came across on my way home. For the next hour or so I skimmed over the pages in the stack of books I had pulled  from the shelves trying to absorb as much information about melanoma as my distracted brain could take in. It wasn’t long before I began to consider that my  future might now be defined by terms like, ” five-year survival rates.”

My daughter was barely six and I was painfully aware while reading that there was a chance that I might not live long enough for her to remember me or to know how much I loved her. I carried those thoughts along the information from my visit to the library with me for the next day or so, stressed as you might expect until I met with my doctor who said something I remember now as, ” It is the best it can be, a Clark’s Level I.”

I had read enough to have a decent idea of what that meant, but even after she took more tissue from my back and the margins came back clear, I still lived in the shadow of a diagnosis that could have killed me if I had I not felt compelled to check the mole that day.

Additionally, there were occasions during my work history that I had to provide my own health coverage as my employer didn’t offer it or I was between positions. My premiums would start out high, but manageable and I would pay everything out of pocket while maintaining a painfully high deductible. Like many in the same position, I thought if I avoided making claims, my premiums might stay reasonable, but they still increased by obscene amounts every year.

Even while I was working for a major pharmaceutical company that had over 100,000 employees all with one particular insurance company, there was still no way that I could intimidate them into behaving with integrity. On one occasion, I tried to do battle the health insurance company to pay for an office visit that clearly fell with the parameters of coverage. They kept denying they had received the claims even though the office had filed it three times and I had filed the same information twice. Multiple phone calls later, including a conference call between the insurance company representative and someone from the doctor’s staff and myself, we both confronted the insurance employe, but got no results. In the end, the office then threatened to send my account to collections which forced me to have to pay the whole bill myself. I was never reimbursed for the office visit and their reason for not paying was that they maintained they had never received a claim. After wasting hours of my time, I gave up, which I ‘m sure is just what the insurance company hoped I would do.

Health insurance companies have held the American people hostage for far too long. Canceling the coverage of people who have struggled to pay crippling premiums for catastrophic coverage only to be told when they receive something like a cancer diagnosis, that they are not covered based on whatever obtuse bit of fabricated nonsense the insurer can cite. By the time the policy holder fights for what they paid for all those years, they’ve either lost everything they own or have died.

I myself was always afraid to admit to my doctor during visits that I’d had cancer. My oncology visits were paid for out of pocket so the paper trail for me was limited. After 10 years of being cancer free, some physicians assured me that I would not lose coverage and encouraged me to be open about it. There were times when I had to tell my doctors, but begged them not to include it in my medical records because I was afraid of being denied future coverage or having my premiums be raised so high that I could not afford healthcare insurance at all. Even without knowing my cancer history, during one of the last times I provided my own coverage, my rates increased so quickly after the first year that I was forced to raise my deductible to $5,000 in order to pay the premiums.

I don’t know what the future will hold with passage of health care reform, but I do know that is an embarrassment to me that so many Americans have responded in such vitriolic ways in the days leading up to the vote. I can only imagine what people will be saying later today as America wakes up. While it may not be a perfect solution, it will make it possible for hard working people to have access to health care coverage with stricter controls on the corrupt power that has been wielded too long by health insurance companies.

Taking the paragraph below from the British Times Online which is not noted for its liberal attitude, you can see how their observations confirm what many have experienced in the US.

” It will also outlaw the worst abuses for which the US health insurance industry has become notorious, including dropping coverage when patients become ill and discriminating against those with pre-existing medical conditions.”

Currently, I live in the UK with my British husband and have coverage under the NHS. So for the first time in my adult life since leaving the Army, I don’t have to worry about my own healthcare coverage. I do still have family in the US and I worry about them a great deal.

I have heard the comments of Americans who have been saying that they don’t want a medical system like the one in place in the UK. They cite negative conditions and situations that I have not experienced here. Quite the contrary, my every experience with the NHS, both personally and by observation involving the care given to family and neighbors has remarkable.

A few months ago during a visit home to America, I tried to share these truths with someone I had been friends with for 31 years. I told him in detail about my own experience with the NHS and what I had witnessed with others here. He argued with me each step of the way, going so far as to say, ” I know that’s what you believe happened, ” while refusing to acknowledge that there might be some benefit to having a similar healthcare model.

He couldn’t tell me what was in the healthcare reform proposal having not read it. All of his energy came from listening to the interpretations of talk radio hosts intent on keeping their listeners passions stirred up over a topic that most seemed disinterested in reading about themselves. His comment this morning on his Facebook page was just as I expected,

” Welcome to the new U.S.S.R.-United States Socialist Republic. “

I am actually surprised to see something so mild after the things he has said in the past.

I understand that many in America will not be happy this morning, but for me this is what life after cancer looks like now that one fear has been removed. Access to healthcare should be for all Americans and thanks to efforts of people who do more than shout about freedom, it now will be.

28 thoughts on “Life After Cancer – Now

  1. This is such a loaded subject. I have lived through three different healthcare systems (Germany, UK and now US) and none of them are perfect. Unlike you I have had some horrendous NHS experiences and was glad to have private insurance when I needed to have surgery many years ago. The UK is also terrible at preventive care and as a result has the highest occurrence of breast and other cancers in Europe. Germany’s system is mandatory and decentralized, kind of like what they have in Massachusetts, and individual insurance costs tend to be very high. But at least we never had to worry about whether we could afford to go and see a doctor.

    One thing that doesn’t really get mentioned though in this whole debate is who is going to pay for all of this? Taxes in both Germany and the UK are very high and life, especially in the UK, is very expensive. How would Americans feel if they had to pay a sales tax of 17.5% or even 19% on most things they buy? If income taxes were raised to the levels of most European countries? The bottom line is that any kind of system with comprehensive social benefits will raise the cost of living. And that is one thing I like about America, life here is a lot more affordable and my living standard – while earning less – much higher than it was in the UK for instance.

    But having said this, the US healthcare system does scare me and seems to me the most flawed of all. The large number of under- and un-insured people aside, I also find it very disturbing that career decisions are tied so closely to what health insurance is provided. As a manager who hires staff I have a hard time finding people because they want the JOB, rather than a job because it offers health insurance.

    Anyway, it will be interesting to see the what long term impact this healthcare reform will have. I expect my taxes and living costs to go up but might not mind so much if there will be fairer and more reliable medical care.

  2. Hmmm. I am glad for some of the changes the bill takes care of: free preventative care, care available for all, and not dening coverage for Pre-Existing conditions. My David also has melanoma and I have Lupus. He thankfully gets coverage through work but we know if he tried to be self-employed again (was 4 years ago) that we would both be denied for coverage. THe term “Pre-existing condition” chaps my hide indeed. But also, as Kerstin stated, the money for coverage for all comes from us too. As it is we pay $1200 a mo for family coverage and have a $5000 deductible. and then we would be taxed on top of that. Hmm. I do welcome healthcare reform, but I am wary of the increased price we are going to pay.

  3. Enjoyed your post.
    I am glad that FINALLY we are moving in the right direction where health care is concerned.
    Recently my husband was laid off from his job after 11 1/2 yrs. Because of that development we had NO health care coverage for any of us—just like that, all four family members were no longer covered. That was frightening!
    I for one am tired of being held hostage by the insurance companies.

  4. We are totally on the same page here. Thank you for sharing your experience. I, too, have friends that have announced their displeasure with the passage of the healthcare plan. Let’s see how they feel about it in a few years’ time.

  5. To reply, with the greatest respect, to Kerstin’s comments.
    The suggestion that the UK has the highest occurrence of breast cancer, (for example), in Europe is simply not true. According to http://www.nomorebreastcancer.org.uk/breast_cancer_europe.html (an independent pressure group) the occurrence in Europe is highest in the Netherlands with the UK actually in seventh place. Mortality rates surely reflect the quality of healthcare more accurately and in this respects the UK is slightly above the EU average mortality for breast cancer, as is Germany, with the Netherlands having the highest mortality in Europe and Greece the lowest.
    The EU average is roughly the same as that of the USA
    Again, with respect to Kerstin, I think her experience and figures are simply out of date. There was massive under investment in the NHS in the eighties by the Thatcher government, which was reversed after Labour came to power in 1997.
    I can only say that as a child of the NHS (introduced in 1948) that my own experience and that of friends, neighbours and family has been overwhelmingly good.
    It is also worth mentioning that Europe now has a largely interchangeable healthcare system, which means that specialist treatment can be accessed by Brits in Belgium or Germany, for example. This seems to be ignored by the “no choice in a Nanny state lobby”
    With regard to cost, the fact is that overall healthcare costs in the USA are roughly twice per capita than those of Europe (the UK still spends less per capita than most of its European neighbours, despite the increases I have referred to above).
    So, it isn’t really a case of ‘who pays’ but ‘how does the US pay’. The huge cost is in support of insurance and high drug costs. It is a classic example of how the free market cannot be trusted to provide healthcare. There will always be a financial incentive to refuse payment.
    If these high costs resulted in the USA being a healthier nation there might be some justification, but on the CIA’s own figures https://www.cia.gov/library/publications/the-world-factbook/rankorder/2091rank.html , infant mortality and expectation on life in the USA are among the poorest in the developed world.
    I fully accept that our system is far from perfect, but it has improved considerably and I certainly don’t hear a great clamour from the rest of the world to adopt the US model.

  6. Thank you Elizabeth, beautifully put, as always ;~)
    I could not agree with you more, John! The UK is certainly not perfect but having lived in the states for three years with a young family (& given birth there) I know I sleep much better here, safe in the knowledge that I have the NHS. I am lucky enough to have private cover too ( this cover is provided by my husbands company…….& if I can ‘ease the pressure of an NHS waiting list’ then I absolutely will). I can’t believe so many Americans are happy to continue to be held hostage by insurance companies as an alternativve!

  7. I am so glad you are okay.
    I watched ‘Sicko’ and was stunned to see and hear the way the US health care system works, or clearly, doesn’t. We have a similar system to the NHS, and yes, it’s not perfect, but at least no one dies because they can’t afford to pay for care.

  8. BRAVO to you, Elizabeth, for telling it as it was for you, and as it is for millions of Americans. As a retired lady, I am blessed to have Social Security & Medicare, and thank God for that privilege.
    As for all those, who screamed against the passage of the U.S.A. Health Care Bill, most have been indoctrinated by Glen Beck & Rush Limbaugh, and would not take the time to research for themselves. Case in point was all those signs I saw, during town hall meets, saying—- “Government Doesn’t Belong In My Health Care”. Ironically, most folks, who were carrying such signs were Senior Citizens, who are apparently not aware that government is already supplying their Medicare health care. How ridiculous is that?
    Then, there are those, who complain that they do not want to be forced to have health care. Well, I wonder if they ever consider that they are already mandated to have auto insurance (by law), and house insurance when they get a mortgage. So, why not have everyone mandated to have health care insurance, that could save their lives?
    I say HALLELUJAH–the Health Care bill has passed!

  9. When I think of all this, one thing I don’t see many people taking into account is the fact that we are living longer at a ferocious rate. I’m speaking from memory, but I recall reading, in Time magazine I believe, within the last 12 months a statistic that said our life expectancy has increased some 20+ years over the course of the last 100. Give it another 20 years, and average life expectancy will be 30 or even 40 years longer than it was in 1900. 100 years ago, we just died. We were spared the ‘inconvenience’ (I am being ironic) and an inconveniently large aging population, by dying, on average, far earlier than we do today. I don’t believe that we live to the ages we do today simply on better nutrition. We had a health care system, as part of the list of variables that contribute to the result, and a (relatively) better standard of living. Today, you can’t go by your gut and wing it, asking grandma what age great- and great- great grandma lived to, extrapolate, and figure you’ll be OK, given luck and a fair wind, until the same sorts of age.

    As an American living in the UK for the last 30 years, my view is that the NHS can be fanastic and it can be bad, sometimes very bad. But I also feel it behooves every one, no matter how well they are covered and by what system, to do as much of their own research on their current or possible ailments and conditions as possible, to face up to the reality of not only what the extra years of life will mean, but of what life means every year at any age, and then to act. Take a long term view of your own health, and act as if you have a long term future before you. That means you check those moles and watch your diet and get aerobic exercise in a few times a week and do all the things that I know I should do more often. And put aside a good chunk of money for the day when diseases of older people catch up with you, and you can no longer safely look after yourself, if you should be that unfortunate and research does not beat you to the cures. I’m not lecturing any one here and I sin as much as any one in not doing these things. I act more on them every year as I see the results in my own life and the lives of those around me, of those who did not act.

    I was not always so vehement, but as I have gotten older, I have become much more so, a convert to the ‘plan and make long term provision’ school of thought, having been bitten because I have not planned or made provision that well. While I have (had so far) the constitution of an ox, my siblings and some of their offspring have not and I can not even imagine what we would have done as a family if we had to reply on the obscenely high cost of US health care. Well actually I can imagine, and the answer is short: certain death, for both children and adults. It beggers my comprehension that people of a free country, those of the home of the brave, would deny this support to all of its citizens. No doubt I will get nasty mail for that comment, but that’s how I see it.

    As for the high cost of living in the UK, I call upon any economist to explain it to this non-economist. It sure beats me. I write this post sitting in the state of Washington, USA where the guv’nor’s cut (aka state tax) is roughly 10%. The 17.5% VAT in UK is added to the price of most goods there inclusive in the price, but things here still cost dollars for pounds – things I pay 1.6 dollars for in UK, I pay 1.1 dollars for, taxes included, in the USA. That’s still roughly a one third uplift across the board, often for poorer quality, certainly for less choice, and frequently for less helpful service – shipping etc, as well as attitude – than the USA. Why? It makes me madder than a hornetm because I feel, rightly or wrongly, that I am being ripped off.

    As in all things, you pays your money and you takes your choice. Which, coming back to the healthcare issue, is fine if you have money to pay. And if you have a choice! If not, too bad for you.

    (If you were to make a post about bad food choices in stores Elizabeth I’m likely to rant on that one too! 😦 I’ll just go put my head in a bucket of cold water for a few secs, to give everyone a break!!)

  10. Thank you for such an intelligent and heartfelt post. I don’t understand why the U. S. feels the need to re-invent the wheel when there are health care systems throughout the world that are working. I’m very glad the NHS is working for you.
    I’m not sure the passage of the current legislation here will fix what is broken.

  11. Excellent post Elizabeth. I was also impressed with John’s measured and intelligent reply to one of the comments.

    Australia national health care isn’t perfect, either, but I am disappointed so many of my U.S. friends make comments similar to the one you quoted — while having no knowledge or experience of anything else. I try not to become upset — I vowed years ago to try NOT to become one of those ex-pats who has nothing positive to say about his or her country of origin. What gets me, though, is the ugly combination of superiority mixed with ignorance (I wrote a post about this in ‘U.S. Airlines, Infrastructure, and Attitude’ which I’ll link to below) — of course this isn’t unique to America, but unfortunately in cases like this, there does seem to be an abundance of ‘I don’t know what your system is but I’m sure what we have is better.’

    The post I wrote is here http://mysydneyparislife.wordpress.com/2009/02/10/us-airlines-infrastructure-and-attitude/

    I can only imagine the relief many Americans must feel as they realise they will have basic health coverage. I liked this balanced article from the Economist ‘Hammering Home Reform’ – re coverage is the new bill’s strength; cost remains to be seen.
    http://www.economist.com/world/united-states/displaystory.cfm?story_id=15758185

  12. I’m so glad you are okay. How very frightening. Your post touched a note with me. I wrote about this subject on my blog months and months ago and I lost readers because of my support of the bill. Unless you have had a serious illness, you have no true idea of how bad your medical insurance is. My illness cost me thousands of dollars I didn’t have out of pocket and then I got dumped by my insurance company. Then, I couldn’t get coverage and when someone would finally quote me coverage, it cost more than a month’s pay. So, I am without medical coverage and I hold my breath and pray. People don’t understand, don’t take the time to understand and as with so many issues (such as gay marriage), they spew vitriol. So sad.

  13. First, I am glad you are cancer free. I know melanoma is much more serious than basal cell skin cancer — but I’ve had a few of the latter removed and I understand the fright you are talking about.

    As for health care reform in this country. I am all for it. My husband’s work has always provided excellent insurance for our family, thank god and knock on wood. And a good thing. I had degenerative hip disease in my forties and was losing my ability to walk. By the time I was ready for surgery, I was in a wheelchair. I had to have BOTH hips replaced within a 5 month period of time. Cost of those surgeries combined was $136,000 — thankfully covered (mostly) by our insurance. We could not have afforded it otherwise. I am walking now, without canes or walkers and remain grateful.

  14. It has been a while since you have posted on a political subject that causes people to pick sides and debate. I have missed that somewhat. Are you surpised at some of the responses? Some of my feelings about health care actually lean to the left. Surprised? I said some but not all. Keep inspiring people to think.

  15. HALLELUJAH…..the President signed the Health Care Bill this morning. What a delight that was, to see this actually happening–with the promise that millions of Americans in need will get the medical help they have been denied before. I thank God for this much needed blessing. And today, I am more proud than ever to be an American!

  16. I am afraid to even look at my FB page . . .I had posted a couple of articles celebrating the passage of the measure, and one of my high school classmates has written back, engaging in a very ugly shouting match with one of my very intelligent journalism-school classmates. He basically says: I have good coverage and why should I care about or pay for anyone else?

    Ugh.

  17. This is a great post. And I am happy you are cancer free! 🙂

    “There will always be a financial incentive to refuse payment.”–

    The same thing that company did to you, mine did to me after giving birth to my son. He had to be checked out by a Ped before they would let us take him home, and the only one on that day was one not covered by our insurance. So we paid by cash, and they said they would pay us back…It took forever to get them to deal with us. They just wanted us to go away.

    I don’t know how I feel all together about this bill, but I know SOMEthing had to change. Having grown up “in the system” and on mediCal there were many health issues that were not taken care of, that I am dealing with now at 37! My teeth, for instance. So I know people need care when they need care. Not when they can pay for it. I hope very much this is the way.

    🙂

  18. Elizabeth, I was married to a Brit for 13 years and enjoyed coverage under NHS during that time. While we never lived in England, I would go to the doctor when we visited for routine exams or if I got sick while there. I was always impressed.

    We celebrated night before last when the final vote was counted that logic and kindness prevailed. I’m self-employed and provide insurance for my family. Finding insurance was a horrible experience, especially finding out that though I was approved and would begin to make payments immediately, the company could drop me for no reason during the first year. All the benefits of taking my money and no risk of having to provide me with care.

    Thank God sanity occasionally prevails in Washington (though it is only occasionally.

  19. In South Africa it’s very very bad public and very expensive private.

    I never had private insurance, but was healthy enough to get by on paying for good health care.

    But the last 8 years here in the UK I’ve been in hospital 5 times and had 2 surgeries. I’d never have managed that in Africa! My money would never have stretched that far. I do know of people who have died in my old hometown in the Cape because they were refused entry due to no medical insurance. One was a prominent businessman who was in a car accident. He had the money, but was in a coma and had no identification… so they turned him away and he died.

    So I still think the NHS is a miracle, even if it has flaws.

  20. John, when I moved to the UK in the early 90s those were the statistics floating around so my information may well have been outdated. In fact, I am glad to hear it is! Sadly my 15-year experience with the NHS has been pretty bad but I find it even worse that families in America have to chose between seeing a doctor and putting food on the table. Reform is badly needed and hopefully it will also address those staggering costs you mention. Like so often in life there is no real one-fit-all solution and given the much larger size and very different political structure of the US I don’t really see that work over here. What I don’t want to see is an increase in living costs with no real changes to how healthcare is distributed and accounted for. We have some interesting years ahead of us!

  21. I never had to worry about health care as my husband was a long time military man. Not always the best of doctors as some use the military to get their residencies. But good enough. And then Tricare after he retired and I guess Medicare when I reach 65. I know I would have lost my insurance years ago when my heart went bad if I hadn’t had these to rely on. I know I couldn’t buy life insurance after I was diagnosed with internal spaina bifida, (which is a chronic, non life threatening thing you are just born with( Mainly causes sciatica) and then mistakenly diagnosed with rheumatoid arthritis. I worry about the money needed to carry out all of the President’s plans though.

  22. Thanks for a very interesting post.

    There is another aspect that doen’t receive much attention, but as a long term expat in the UK it became very relevant to me in recent times.

    I have lived in the UK for a little over 30 years now and developed very severe and chronic health issues about 13 years ago. As a result I had long term care and ultimately a kidney transplant.

    As somebody who had previously been very fit this all came as a great shock. the care I received funded by the NHS was excellent and I had no need to worry about any financial implications whatsoever arising from any aspect of my treatment.

    Subsequently I returned to work and then later set up my own business which now employs two other people. If my health insurance had been linked to my employment there is very little chance that I would have been able to embark upon this new venture.

    It is frustrating that when I have tried to discuss this with some members of my family in the Us there seems to be no way of entering into any sort of reasoned debate which makes me very sad.

    Peter Bond

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