It may not be very British but I’m going to talk about money. When this Myeloma journey started, my hubby and I immediately obsessed and worried about money, about what a cancer diagnosis could do to us, and how much treatment would cost. I was disappointed, ashamed and annoyed to discover my NZ life term insurance had recently expired. It had always been a comfort to me that if anything had happened to me, Mum and Dad would get some money which would at least cover any unforeseen expenses such as Mum and Dad coming over for a funeral, funeral costs etc…but no, I let it expire without reviewing it….and the NZ insurance company who had happily taken my money each year had failed to update their systems with my new contact details, ensuring I didn’t receive any notifications of impending expiry. They don’t offer that type of insurance anymore and so to renew, instead of paying an affordable sum, I would have to pay upwards of six times the amount for less coverage, and the fee would increase annually. This would only be an option, of course, if I could get past the health questionnaire. Here’s the first thing, that turned out to be costly.
Next, and we put our hands up, it was our fault, after having health insurance for over ten years, we had just gained quotes for renewal and then decided to defer paying for a new policy for a few months. We surmised, incorrectly, that we were fit and healthy; it could wait until hubby had changed job as health insurance often came in the salary package. If he hadn’t secured the job he wanted within three months, we would take out a separate policy. Murphy’s law, cancer turned up in our lives, within the first month of the period with no cover. We felt embarrassed, upset and kicked ourselves that we had taken this risk; it hit hubby hard. He felt guilt and worry that he may not be able to provide me the treatment and care experience that he wanted for me, without private health insurance options. That wasn’t necessarily the case but we didn’t know that at the time; he felt awful.
I was worried about money and treatment experience, and I knew, we had made the health insurance deferral decision for what seemed the right reason and sound risk assessment at the time; it was, what it was. There was no point worrying about it now. As it turned out, with all things weighed up (including the cost of self-funding; a minimum of £15,000 per month for approximately two years and that did not include stem cell harvest and transplant procedures), I more than likely would have chosen the NHS trial route anyway (or maybe this is choice bias at work?!) and so this decision would have had minimal impact.
The hidden cost, has turned up when I have tried to get health insurance post diagnosis (you know, for all the things that can happen to me health wise that are not about cancer); not a simple or affordable task by any means. If you have had or are living with cancer, many insurers simply won’t insure you. Too bad, if I get hit by a car crossing the road and break my leg (nothing to do with cancer). This is yet to be resolved. Thank goodness, the NHS is usually fab in emergencies.
More costs turned up, and this was all before getting to day to day living costs that seemed to have quadrupled since cancer arrived. I had just finished a doctorate and as many readers now know, we had planned the trip of a life time with friends to meet in Canada for skiing. A wonderful luxury, saved for and highly anticipated; a fitting reward for all our hard graft over the previous five years. First our flights had to be changed and a new flight purchased, some accommodation and car rental costs forfeited and new ones incurred all to ensure I was back in time for treatment. Next the company we had paid for travel insurance with, over the previous 15 years and with whom I had never claimed, cancelled our policy on hearing of my diagnosis – not just my policy but hubby’s as well!
Trying to find travel insurance when you are newly diagnosed with cancer is not easy. Only a few insurers do it, they ask a whole heap of very personal questions (that I had never anticipated having to answer) but that is not the kicker. The kicker is that instead of paying £120 for a comprehensive travel policy that includes all the sports, the cheapest policy I could find was well over five times as much and gave me considerably less cover. Nice! A real, kick you when you are down, moment. For a few minutes, to myself, I cried and threw my toys out of the pram; how dare they? Don’t they know this situation is hard enough? My holiday has been spoilt. I’ve got cancer! They’re exploiting me. They know I don’t have a choice but to pay their charge or not go on holiday, how cruel can they be? Bast***ds’. Why was I being kicked while down and discriminated against? Obviously, I am not meant to travel when I am living with cancer or recovering, I am contaminated and meant to stay at home, rest and be quiet. Expensive, that’s what it is. I felt hurt and upset. Apart from the cancer, I was well, managing my treatment well and doing everything I could to ensure I would not need to go to hospital or need any extra meds while away (hell, I was even away with a medical expert) yet I was still required to pay a crazy amount for travel insurance. In the end, I paid, putting quality of life over money. I know I was lucky to be able to do this (see post Elk-ibou on the corner of Fox and Cougar).
Health insurance is expensive and hard to get. Travel insurance is expensive and hard to get. What next? Everything. Living with cancer, everything has seemed more expensive. If it hasn’t cost extra, it has usually meant I have had to trade off not incurring an expense with doing/buying something that may be helpful or healthier for me. The books I’ve bought about Cancer and how to survive; the organic food, supplements, the nutrition appointments all to ensure I was doing the best I could do for my body; weekends away that I booked because I worried I would become too ill to travel, anywhere; the glass containers I bought which were ‘safer’ than the plastic we’d lived with for years, the cleaning products I bought to eventually swap out with the brands I was used to buying, the bees wrap instead of cling film, the natural instead of usual skin care, all to avoid harmful toxins, parabens, BPAs and the like; the nutri-bullet and extra cups for the plant food smoothies, the non-dairy milks that are more expensive than milk because I’ve been advised to avoid dairy food for a while; the new clothes, I didn’t want to waste money on but had to buy because my clothes were dropping off my new plant food/chemo’d1 frame; the new, old car (plus insurance, MOT, resident parking permit) that we bought in case I became too ill to get to hospital appointments but had been managing perfectly well without, ‘before cancer’…these have all been costs we would not have had this year or ever, if I hadn’t received my news of Myeloma. If I keep thinking about this topic, there are other costs too but I’ll stop here before this list becomes overwhelming.
Many of these costs may appear non-essential; if there is limited income and children to feed and support, I understand how many people living with cancer may not spend or even have the money to spend on books, blenders and the like. And there it is…the big question, how much does the ability to afford these changes, impact outcomes of; overcoming cancer, managing treatment or at the very least, living the highest quality of life possible?
What a horrible situation to be in, a horrible choice to have to make (if there is a choice, and for a parent particularly); asking themselves, do I spend the money on things that may help me overcome cancer or stay as well as possible, for as long as possible or do I forgo those expenses because we don’t have the money for them or because I don’t want to spend the money spent on me, when there are kids to provide for? In my case, with no kids to consider, I found myself also thinking, I don’t want to waste money because Si still has a life to lead after I’m gone. We have built our assets together so why should we spend all the assets we have on my treatment needs/quality of life preferences now, only for his life after me to be significantly worse off, financially? It’s his life, his money, too.
Ok, so costs are up, some through choice and some through imposition by others. Then there is the whole matter of income. Would working be feasible while getting treatment and was I entitled to any income support? I’d just applied for two great part-time roles to go with the independent projects I was working on. I put the applications on hold. The weekly schedule of hospital appointments, blood tests and Chemo didn’t seem to leave room for work. Working as I had planned to work, seemed impossible. Not knowing how I would cope with Chemo and how much rest I would need also made it difficult to commit to a new job. I didn’t want to let others down and I would need flexibility. I’m not sure I would have hired me in those circumstances.
Costs have gone up and kicker number two; earnings have come down, crashing down. I know some people work while receiving treatment, through preference for the distraction or normality of working. Some people work because they must. Others can’t work through being too ill and rely on income support through disability or illness. The overall equation is simple; less income in, new costs and normal costs doubling, mean less money overall, fewer choices and for most people, more stress and pressure, right at a time when resilience, calm and mental strength are needed.
How do people living with cancer cope? How can I cope? Even the idea that I would need to consider income support played with my sense of self, sense of standing on my own two feet, being independent, contributing and not being a burden. Yes, I know, I can hear some advice now, the support is there for these kind of times, when unforeseen circumstances hit, you’ve paid your taxes for twenty years, you’re entitled to support, take it. It still irks and I’m working through what I can and can’t claim, how much I can and can’t work, whether work is helpful or unhelpful, an option financially or not.
There has been a wee light at the beginning of this cancer cost journey; the small critical illness insurance I did have, was paid out within 10 days without quibble. I am forever grateful for this, for one insurance company’s sensitive, rapid handling of my claim. They made sure they didn’t add any more stress to a very stressful period of wrapping my head around diagnosis, the very opposite response of the travel insurer.
The challenge now is to turn this wee bit of money into considerably more money and find the time, amongst all the treatment, for this whole other project – changing our finances for our new circumstances. I feel so awful for my husband in all of this; he didn’t sign up for his quality of life to be diminished, his wife to be ill and more pressure on him to earn and yet simultaneously be with me at treatments and consultations. We certainly hadn’t included hospitals and medications and thoughts about selling our home, in the design of our near future. Yet, I know in so many ways we are lucky and many people don’t have choices financially or otherwise, in the way that I do, we do. Though sometimes I don’t feel very lucky.
Cancer costs; not just emotionally, physically, spiritually, intimately – it costs financially, in all sorts of directions, I couldn’t have anticipated and know that I am yet to encounter. I’m not yet facing that scary prospect of needing an experimental drug not yet available in the UK or a trip to the USA for a new type of Car-T cell treatment or new transplant. Those do not bear thinking about right now.
Talking about money is hard; it is so often a contentious topic or a trigger for stress. People often have very different views about money and very different relationships with money. It can be hard to find agreement with the ones we love about how money should be earned, spent, saved and valued and that is when life is going well. When illness strikes or circumstances change, it becomes even more important to set aside any fear, vulnerability and embarrassment arising when talking about money. I recommend taking a deep breath and just start talking about it, in a matter of fact manner; your financial mistakes, lessons learned, fears and hopes. One hope I have is that this post helps others talk and listen to conversation about money in a compassionate and non-judgemental way. In cancer journeys, along with other life journeys, agreeing how to move forward financially is important and warrants open honesty. This will help money worries and any negative impact on recovery and treatment outcomes for the person living with cancer and their loved ones to be minimised.
1Chemo’d (my new word, do you like it? Or I could just say ‘fried’ but I like Chemo’d better, more self-explanatory I hope)
Editing: Isobel S
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