Cancer has enormous costs, physically, emotionally and financially, and in this post I’m going to discuss the latter, because it’s a topic not discussed enough. But first, an update: Since receiving the news my treatment isn’t working, we’ve been exploring as many other options as we can. We saw the private oncologist we’ve met before who wants to understand more about my liver tumours as these are the main issue, to see if there is any treatment we can target directly at them. I subsequently had a biopsy on my liver and the tissue has been sent off for mutation/ genetic testing. We now have to wait a few weeks for the results, and I’m on a treatment break until we get them. Whilst this is great in a way (no horrid side effects and more energy than I’ve had in a while, although I still need a nap most afternoons!), it’s also scary as we know the cancer is aggressive and is almost certainly growing. I am also in some pain from my liver as the tumours are causing swelling, pressing on the nerves. The pain is constant but manageable with painkillers, although my sleep is disrupted which is tiring and it’s a constant physical reminder that the cancer is there.
Other treatments we’ve investigated have included liver surgery and specialised radiotherapy, but given the extent and placement of the tumours these aren’t an option for me. I’m also starting to explore additional complementary therapies alongside the nutrition/ supplement protocol I am on. Finally there is the option of going back on chemo with the addition of a drug called Avastin (privately funded). Whilst chemo has never been fully effective for my liver, there is a small chance the Avastin could make it more effective. Again, we’ll wait for the genetic results before deciding on the right treatment route.
So for now, it’s a waiting game and we’re taking life a day at a time and doing our best to have fun. We had a fabulous trip to LEGOLAND courtesy of the wonderful Willow Foundation, and I’ve been catching up with lots of family and friends. Living in the moment and making memories… it’s what life is all about!
So on to the money… the topic that just isn’t discussed. It’s certainly something I’m uncomfortable talking about (I’m so terribly British), but that’s precisely why I feel I need up bring it up. I had no idea how expensive it was to be ill before I got cancer. Honestly, it’s just not a topic that ever crossed my mind. I have always been very financially prudent, ensuring I had savings for a rainy day, but the enormity of the financial impact of illness isn’t something that anyone can really comprehend until you’ve experienced it.
Firstly there’s the impact on income. This varies hugely depending on what and how you are earning whilst diagnosed, and how much the cancer and treatment effects you day to day. Whilst some are able to work through treatment, others are not, thanks to the physical symptoms of the cancer itself, or the side effects of treatment, as well as mental and emotional challenges. For those employed, there will be some sort of sick pay, but this varies between companies, and in most situations, after a certain time payment will be limited to statutory benefits which are as low as less than £100/week. There are also benefits available for those self employed, but again the amounts are limited.
I was self employed when diagnosed which meant I didn’t have sick pay or medical insurance from an employer. I was in fact, doing limited work at the time as was studying and looking after my 1 year old. As a consequence I was living on savings and initially thought I’d be fine continuing like this. I was fortunate to have well paid jobs through my 20s, and thankfully had always been careful with money, saving hard. As such, we were in a financially far more favourable position than many and the thought of claiming benefits horrified me to be honest, as I felt there were so many others who needed them more than me. But as the reality of continuous treatment and the impact this would have on my ability to work in future dawned, I swallowed my pride and my palliative care team helped me with the complex process of getting onto the benefits system. Whilst my benefits are a modest amount of money, I quickly became grateful for them as they really help with day to day living costs. I am still thankful every For day that we have savings to fall back on, as we wouldn’t manage without these.
Aside from the impact on income, being ill has additional costs. From travel to hospital (significant for those having to go long distances), to childcare/ home help when too ill to look after children, or for that matter, to even get out of bed, to supplementary treatment (the NHS is amazing but can’t provide everything, for example I had to pay for my own physio post surgery as the waiting list to see an NHS one was months); the costs over time really do add up. Luckily for me, until now these costs have been manageable; I live close to hospital, family and friends have helped look after Oscar, and whilst I have spent a fair amount on additional treatment including physio, acupuncture and massage therapy to help with pain, and nutritional consultations and supplements to support my overall health, these costs have not been enormous.
But financially everything is changing now I’m out of NHS options. We have no choice but to pursue the private route, which comes at an enormous price. Again, we are lucky that so far we’ve been able to use savings to meet these costs, and it angers me enormously that there are people in similar positions to me who do not have this option at all. To give an idea of the amounts, it costs £200 every time I see my oncologist (regularly!), my liver biopsy cost nearly £3,000 and the mutation testing another £2,000 and I am having a specialist scan which costs £3000. The current two drug options being considered will cost £3-5,000 per month, then there is the cost of regular blood tests and scans (although some I may be able to still get on the NHS). These costs could easily total in excess of £20,000 before Christmas alone. So once again I’m swallowing my pride and am accepting the incredibly kind offers of fundraising and donations so many of you have made. We are enormously appreciative of these offers at this challenging time, so a truly heartfelt thank you to all of you. You can find my crowdfunding page at https://www.justgiving.com/crowdfunding/caroline-yeats
And my final words of advice… take out medical insurance if you can and don’t grudge spending money on keeping yourself healthy! Buy the best quality food you can including plenty of fresh vegetables and fruit, spend a little on fitness, and things to reduce stress (a huge mediator of chronic illness), and pay for testing early if you have any concerns and the NHS wait is too long. If I’d paid for an MRI when my back first went, I may not have needed surgery and we may have caught the cancer early enough for treatment to have been more effective (although it wouldn’t have changed the fact I had stage IV cancer). There is no point me dwelling on what if scenarios, but now I encourage everyone I know to get anything worrying tested as soon as possible, even if it costs them money!