How long can I afford to live, if my cancer returns? Do I need to budget for cancer? It is a question I ask myself regularly. And I know I am not alone in this.
Financial toxicity of cancer means that living with or after cancer is expensive. Even if the core treatment is covered by the state or insurance our financial safety net is compromised, because of additional and peripheral expenses, while less (or no) money is coming in.
In that way, financial toxicity applies to many other life-changing or life-shortening illnesses, injuries or chronic illnesses.
Having lived most of my life in the UK, and worked all my life in the UK, I feel better placed to talk about my experience here as a breast cancer patient and currently living in remission.
In the UK some (not just breast) cancer treatments are not available on the National Health Service, NHS. Up and down our land, private tragedies are played out because of this stark reality.
The same happens in other countries and continents, where access to health care is even more restricted, complex or has limited availability.
If you are affected by cancer, like I am, then you may recognise the fear over finances and the impact of financial toxicity.
It is hard enough to hand over one’s destiny to medical experts and to remain sufficiently involved to ensure we make the right choices (like where you have your NHS cancer or other treatment).
All that can be daunting enough. To have a price tag attached to one’s destiny is an everyday reality in many countries. It is shocking when it happens, wherever you may live. It is shocking and not enough is done about it.
That is why I am grateful to the late UK-based journalists and cancer patients Steve Hewlett and AA Gill and many others for speaking out so frankly about what not getting a life extending cancer treatment on the NHS meant for them.
Reading between the lines of what turned out to be AA Gill’s last piece for the Sunday Times, not getting immunotherapy through the NHS potentially cut his life short to something like 3 weeks post announcing his cancer diagnosis.
Like many others, with or without cancer or in remission (when there are is no evidence or symptom of cancer), I am worried of this ever happening to me.
I am trying to work out how to be best prepared for this eventuality.
Yet I am also trying not to get sucked into an irrational anxiety of traumatic proportions, which would not advance my health.
When I was treated for cancer it was on the NHS. I chose not to be treated in the hospital where I was diagnosed. I have no regrets and I would / will do it again. I am thankful for having had a choice.
But there was no discussion about whether another, perhaps more effective treatment might have been available privately, and indeed, whether this would have been necessary.
When my chemotherapy had to be cut short due to serious side effects I developed from the cancer drug, there was no discussion whether another drug might be available privately. I was too ill to think about it and ask. Looking back, I wonder whether I should have handled the situation differently. But that was then and this is now.
As anyone treated for cancer will tell you, cancer does not end with treatment. For those fortunate enough to be in remission, the prospect of reoccurrence, developing another cancer altogether or other health problems due to the first cancer treatment are there – always.
Uncertainty, grief, anxiety and depression are common post cancer treatment. If cancer affects our physical, mental and emotional health, it also drains our pockets and bank accounts. Financial toxicity, hardship and reduced earning power are not uncommon. Like many, I, too, know from personal experience.
The fear of not being able to afford life saving, life extending or life enhancing cancer treatment now or in the future is a very real added pressure.
What to do?
Even if you can afford private health insurance, existing health conditions like cancer will not be covered or only after a certain number of years in remission.
Depending on the level of cover, not all cancer drugs may be included. Which drugs we may need, if and when, all that is unclear, adding to yet more uncertainty.
I recently took out additional insurance, but my previous type of cancer will not be covered for yet a few more years, and only then, if it has not returned. I am paying a lot of money (which I have to earn first), in the hope that I will have greater inflexibility in my choice of treatment, without undue delay.
Is it worthwhile to pay into a private pension (which has tax benefits) versus paying into a private health insurance (which does not)? Will one live long enough to benefit from a private pension?
Would you be able to raise money quickly, if you were diagnosed with advanced and / or terminal cancer, which may still be treatable?
Not everybody is fortunate enough to own a property, with sufficient equity and able to re-mortgage.
Selling a home takes time too, leaving others and yourself potentially homeless or with limited funds to afford renting. If you have made yourself intentionally homeless, then you may not be entitled to support from the state.
What if appropriate private treatment is cheaper abroad? We hear of cases where patients opt to look elsewhere. But this also takes energy to research, physically travel and stay in a different environment and trust in an unknown health provider.
Again, all of this takes time, is stressful and dare I say near impossible to manage alongside cancer treatment and on your own.
Some may consider setting money aside now, or identifying friends and family who might be able to help. Some private pensions will pay out early, if the cancer is terminal. Some life insurances will pay out, if a tumor is malignant.
Selling a home or other belongings now to have the reassurance of money in the bank might sound extreme. With low interest rates, high rents and uncertainty about if and when the cancer may return or not, this may be a risky undertaking.
Not everybody feels inclined or capable of speaking out when certain cancer treatments are not available to them on the NHS, which could mean survival or a different path and time scale of dying.
Not everyone is a campaigner. I am not. And not everyone will have his or her voice heard or acted on.
That is why it is so important and valuable when others like Steve Hewlett, AA Gill and many more share their experiences and ask uncomfortable questions of the way current cancer drug funding works.
In the meantime, the answer to my question whether I think I should have a personal cancer budget is ‘yes’. Being able to afford a drug or not, should not determine when and how I die.
Alas, the reality is a different one. In hindsight, I had not prepared well financially for the possibility of getting cancer in the first place.
But who does?
You might also be interested in my interview about coping with the emotional impact of cancer: Listen here
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