Saturday, 19 January 2019

Weekly Discussion Summary ~ Financial cost of breast cancer

We often talk about the emotional and physical cost of a breast cancer diagnosis. This week, in our discussion, we discussed the stark reality of the financial cost.

Having cancer incurs hidden costs that are rarely called out, and at a time when our ability to earn is reduced. We may need to extend our sick leave beyond that which our employer will support with sick pay, we may not be able to return to work at the same income level after treatment, or at all. It is common to move from full time to part time, to change careers for something less stressful. Self-employed women may be left without income for a considerable period and small businesses may suffer beyond repair. 

Our group is made up of women with both primary and secondary diagnoses. Whilst many with primary breast cancer may return to work after treatment - and a few with secondary breast cancer continue working - many of us with secondary breast cancer continue with treatment and often are unable to continue with their careers. There is often a cost for specialist treatment and palliative care if we become seriously unwell.

Returning to work and continuing to work can be fraught with problems, with some of us struggling on short phased returns with little management support. Fatigue is a long term after effect of cancer and sometimes this can be debilitating. For those who do successfully return to their old jobs,  they may no longer be wanting or have the energy for promotions or career progression.

The additional costs of having cancer include:travel costs to our treatment centre, parking costs, hats and scarves and wigs for that time without our hair during chemotherapy, pillows and pyjamas that open down the front for surgery, specialist bras for post surgery and then pocketed bras and swimwear forever (which cost more than ordinary bras and are mostly ugly to boot!). 

Exercise and eating well are key to our health, with many of us taking supplements, and maintaining a healthy lifestyle can be expensive. 

Travel insurance costs rocket up, particularly for women with secondary cancer, and life policies may become invalid. Getting further life cover and private medical insurance may become prohibitive. Being at home all day during treatment means heating costs go up. 

Some of us had paid for genetic testing which we were not eligible for on the NHS. This can be expensive, but so important for many wanting to understand future family risks. 

Many members had critical illness cover which was a huge help for them, with some being able to pay off mortgages. Others turned to relatives for help. Some have negotiated retirement on medical grounds, often involving a huge drop in income. Others have left stressful jobs and set up their own businesses or found less demanding work. 

Some have cashed in savings plans, including pension plans, or sold their homes to make ends meet.  ESA is available for some, and PIP, and prescriptions for all medications are free following diagnosis. 

Some used annual leave instead of sick leave for the time off work needed, but this of course left no holiday time, hardly supporting a healthy recovery. 

Macmillan helps cancer patients in financial difficulty with small grants to cover treatment travel costs. Banks offer cancer support schemes, which might freeze loans provide mortgage holidays for example, but these come with mixed reports regarding their usefulness. Claiming benefits involves completing long complicated forms and assessments which can be very stressful, and Macmillan do assist with this. Macmillan can also advise on unfair dismissal, redeployment and discrimination at work. 

Having cancer can mean a permanent drop in income and lead to a necessary change of lifestyle.  For those who get by, luxuries like travel and overseas holidays may become a thing of the past. It may take years beyond diagnosis to return to financial stability. At its worst, cancer may bring with it real financial hardship, the stress and worry of which cannot be helpful to our reduced level of health and fitness. 

If you are a woman with a breast cancer diagnosis living in the UK and you would like to join our private group, please send us a private message.

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