The truth about the cost of having cancer in the UK
On February 20 I went on to half pay and it’s a bit scary.
Deep down, I’m not sure I thought it would get this far. When you start this journey, even though you’re constantly thinking the worst, there’s part of you that struggles to grasp that it’s also a reality. It feels surreal. I remember walking around for the few days after my initial diagnosis thinking how strange it was that we could walk in to shops and bars when I have cancer and nobody knows. How can it be real when the world hasn’t stopped?
So I guess I just assumed that things would return to normal much more quickly than they have. But, here I am, having used up my 5 months of full pay, with a minimum of six months of chemotherapy looming ahead of me. Half pay will just about cover my direct debits and standing orders, leaving nothing left over for food, fuel or any other possible living costs; let’s not even think too much about possible emergencies.
And it brings home how easily life can change. How one minute you’re independent and financially stable, and the next, through no fault of your own, you’re worried about how you will manage to pay your bills.
This concept is definitely not new to me though. For many years I was in a relationship with someone living with a chronic illness. He had been a successful sales manager and home-owner one day, and the next, diagnosed with a degenerative condition that made it difficult for him to work at all. He had eventually lost his house and had been forced to declare himself bankrupt (long before we met) – with long lasting consequences.
And, as a result things were pretty tight. I was the main breadwinner, and although I didn’t always earn very much, it was always just above the threshold that would allow us to claim many benefits. I always felt it to be intensely unfair that if you were unlucky enough to be dealt a dud hand in the health department, you would never be allowed to get to a stage where you were 'comfortable'. We could never afford holidays. We rarely ate out; we never had new furniture or electrical appliances. We drove complete bangers. We bought our clothes in charity shops. I didn’t return home to Australia for a full ten years, because we never had anything left at the end of the month to put away for flights. Owning our own home would never have been possible.
And I think it’s actually really sad that when that relationship finally broke down we were both much better off financially. Without my wages, my ex-partner would be eligible for a greater range of benefits and be eligible for free prescriptions. And for me, being single again gave me a new financial freedom I never thought I would have; I consolidated my debts, started putting something away each month and was able to plan for biennial trips home to Australia. For the first time I didn’t drive an old banger and I enjoyed being able to fix my car when things went wrong without worrying where the money would come from; I could pay my vets bills in one go without having to ask to pay in installments. I loved being able to stop for a coffee or a meal out whenever I wanted to without having to go without basics later in the month.
More recently, when Steve and I finally got a place together, I even managed a short foray into the world of the Double Income No Kids (DINK) lifestyle. The idea that maybe we might even be in a position to buy a house of our very own one day, no longer seemed so unreasonable.
My career was going in a positive new direction too. After 10 years of teaching GCSE English re-sits in Further Education Colleges, I’d realised my long term goal of working at a Sixth Form College, and had just started teaching my first A Level Literature class. I was also enjoying teaching some Media and Creative Media units – I felt newly fulfilled. I was surrounded by an even greater range of really experienced and impressive English teachers from a variety of backgrounds and was feeling supported and inspired. I had a lot to learn but I was in the best place to do so.
And then cancer happenned.
I think it’s safe to say I had a bit of a break down. Following my diagnosis, although worried about using up my full sick pay, I was equally worried that I’d swear at my students. It scared me, spending so much time thinking about my own death; I didn’t think I could just switch it off and carry on with a job that required you to be mentally seven steps ahead at all times. I suddenly felt very far away from home, and was fairly consumed by my anxieties – what if it turned out to be incurable? Or terminal? What would I do? Where would I live? Would I go home? To Australia? Would I even be able to seek treatment in Australia after all these years? Would Steve come with me? Are we ready to face this thing together? What if he left me? What if I died?
Following my operation, recovery felt really slow, and being so close to Christmas and New Years meant my histology results and final staging seemed to take an age. I’ve talked about my staging in other posts, but even though my thoughts had been consumed by the worst possible outcomes, they still came as a real shock. All the way through this car crash, because the professionals had always seemed so relaxed about everything, people kept telling me that it couldn’t be that bad. And I had tried to believe them. ‘Surely things would move more quickly if it was serious’ or ‘I mean you don’t look sick!’ I’d heard time and time again. I was clearly just being 'unnecessarily fatalistic' I kept telling myself. So finding out I was stage 3, grade 3 came as another blow. Six months of intensive chemo sounded mind-blowingly impossible.
I talked through the likelihood of working with my oncology key worker nurse, and finally began to realise that I probably wouldn’t be back at work after February half term as I’d thought.
‘Most people find they can’t work through chemo,’ she had explained. ‘Especially as a teacher’.
She asked me to hold off till I’d been through a few cycles before I even thought about returning.
So I made an appointment with a financial advisor through the Big C Centre in Norwich and met Les.
Les is one of life’s good guys; he’s tall and grandfatherly. And a little low on teeth. ‘You might call him Tooth Les’ my Dad had joked when I Whatsapped them later. But, teeth or no teeth, Les talked me through my options clearly and in depth; I wasn’t eligible for much. He explained how I would only be eligible for the ESA support group and how to apply for it. He spoke with passion about the inconsistencies of the benefits system, and how he would help me approach a PIP application further down the track. He explained how the application worked, and the hidden tricks behind the assessments. It sounded horrendous.
The next stage involved a visit to meet Des from the Job Centre.
I’d never been inside a Job Centre before. Security guards meet you on each level and the offices are entirely open plan. An army of advisors face you from both sides, with first-name-only nameplates on each desk. Marks and Davids and Rays. Not many seemed to be women.
I sat gingerly on a light blue sofa in bay ten to wait for ‘Rob’ (as directed by the letter I had received a week earlier) and looked around at the other ‘clients’ waiting as I was. Most of them were very young. Leggings and tracksuits. No irony. I wondered about the stories of all these people – what had brought them here?
It seemed such a public space to have what could be very personal conversations. I really hoped I wouldn’t cry.
One by one the ‘clients’ around me were called up to a desk. I watched the hands tick by on the clock to my right. I tried to look as though I was waiting really expectantly in the hope someone would notice me. I couldn’t make out ‘Rob’s’ nameplate anywhere. Half an hour later I approached ‘Mark’ – I had to assume his nameplate wasn’t lying.
So it turned out my letter was wrong. I’d turned up 2 hours early. But luckily for me ‘Des’ was free instead and couldn’t wait to help me with my claim.
Des told me that he used to be a geography teacher and I could tell that like Les, Des was really passionate about his job. He walked me through all the paperwork, even though most of it wasn’t relevant to me. The cancer card seemed to be trumping a lot of the barriers other applicants might face. We managed to tick the ‘this does not apply to me’ option nearly every time. But when we got to the ‘Extra Activities’ box he stopped.
‘I am going to assign you some extra activities’ Des informed me kindly.
‘Oh no,’ I thought to myself. ‘How could I cope with any more hoops, when managing cancer and my own mental health seemed to be a full time job already?’ – I hadn’t even started chemo at this stage!
‘I want you to promise me, that no matter what, you will do these two things everyday’ Des continued. ‘One. I want you to go outside. Everyday. And two. I want you to have a conversation with someone.’
Dear, slightly patronising Des. Before I left he made me take a an Action for Happiness ‘Action Calendar: Friendly February 2020’ that he had proudly copied and lined up in a neat pile on his desk. He told me I could come and talk to him anytime; I would never be turned away.
But when I asked if I could use the toilet he sent me in the direction of St Giles St car park – even though we’d just spent the last hour talking about my bowel cancer. I had my Mcmillan Toilet card on me. I should have used it, but somehow I didn’t want to hurt dear Des’ feelings.
I thought of Des later, on day 3 of my first chemo cycle when I could barely move. I felt sad that I would fail that day, and the next few days at least, to carry out all his ‘Extra Activities’.
On my way home I dropped in to my bank. One monthly cost that was worrying me were my loan repayments. I had taken out the loan following the break down of my previous relationship: I had found myself in a small amount of debt and living on my own for the first time in my life. It’s not a big loan in the grand scheme of things, but repayments are £200 a month and I’m about half way through the loan term. Stupidly this is something I should have spoken to Les about at the time, but Macmillan advise cancer patients to discuss their situation with their banks as there are options for freezing mortgage and loan repayments.
I was referred to the ‘Financial Difficulties Team’ who then sent me to the ‘Vulnerable Clients’ team. And I learnt that the options available were pretty rubbish. Yes, I could freeze my repayments, however, unlike I had imagined, they would not just extend my loan term for however long I needed to freeze repayments for. No. Firstly I would have to be able to assure them I would return to full time work within six months – I could not. Secondly I would still have to repay the loan within the original loan term. This would mean that after a freeze of six months, my monthly repayments would increase to £300 a month – something else I could not commit to.
My second option was to opt for a less-severe type of bankruptcy. They would wipe the majority of my (small) debt, but I would be left unable to borrow any further money or take out things like phone contracts or any other form of finance for at least six years.
I think I cried.
‘No way’ I ranted at the man from the ‘Vulnerable Clients’ team. ‘This is not forever. This is a chapter in my life and then I am going to be me again and everything will go back to normal. I don’t want this.’
I’ve since applied for a grant through my teacher’s union – I asked if they might be able to help me cover my loan repayments so that I do not continue to get financially penalised for this illness for the next six years. I know already, that getting life insurance, a prerequisite for taking out a mortgage, will be enough a struggle…I don’t need extortionate repayments or the implications of bankruptcy on top of this. I await to hear the result.
My ESA application is as far advanced as it can be – apparently I am not eligible until my Statutory Sick Pay runs out on April 12th. I also do not know what amount I am likely to be awarded – it could be anything from £70- £100 a week. Even if I do qualify for this, belts will still have to be squeezed.
In the meantime, we’ll have to manage on half pay alone and the savings I had put aside for our trip home to Australia. So far I’ve cancelled my gym membership, contact lens contract and any other non-essential subscriptions. We will find lots of other ways we can cut back on our spending. Holidays will go on hold; nights out will be avoided; packed lunches will be a must…and we’ll cross everything that the dog and the car stay healthy for the time being! We’ve already had to pay out for a new fridge – ours was a little dodgy and the implications of e-coli when on chemotherapy were too big for me to gamble with.
In so many ways, I cannot complain. I am so lucky that I work for a large employer who takes staff wellbeing seriously – and that I have worked for them long enough to be eligible for the generous sick pay entitlement I have had so far. I am also lucky, that my workplace has been incredibly supportive – from the moment I faced my initial diagnosis back in September. Not once have they put any pressure on me. My line managers have discussed and devised opportunities for me to work from home or to come in for as little as one day a cycle if I want to, when I feel able to, or when I feel confident about managing my side-effects and low-immunity. When I feel ready to begin a phased return, my full pay will return. Many, many people are not as privileged as I am.
I am also immensely lucky that my diagnosis wasn’t incurable or terminal, and that, everything being well, I will get my life back after a difficult year. And fingers crossed I will remain cancer free for a long time afterwards.
But, it still feels cruel that just when, for the first time in my life, I was feeling financially stable, just when the dream of owning my own home was beginning to look less of a pipe dream, an illness I have no control over can have such a negative impact on my future financial stability.
According to Macmillan’s new research, published in the report ‘Cancer’s Hidden Price Tag‘, on average having cancer makes patients £570 worse off a month. Right when you can’t afford it: ‘Reduced income is (also) a major factor of financial hardship. Almost one in three…lose, on average, £860 a month.’ (Macmillan: Cancer’s Hidden Price Tag report, p5). My heating costs have already skyrocketed in an attempt to counter the cold sensitivity caused by my particular chemo concoction. Similarly, I have had to invest in what feels like a hundred different pairs of gloves and woolly hats. Hospital parking is steep too…we do get free parking, but only if we manage to find a space in the hospital car park. So far we have been forced to use the privately owned alternative every time. I can no longer catch the bus due to my low immunity: if someone can’t drive me to appointments I will have to pay for taxis. And I am only one cycle in: who knows what the rest will hold.
But, it could be worse. I could be in America and facing bankruptcy as a result of my treatment alone. I dread to think how much I have cost the NHS so far – and I will be eternally thankful that right now I am a resident of the United Kingdom. And I will be eternally thankful for the Big C Centre and Star Throwers and the Les’ and Des’ out there that care and try so, so passionately, to support us through this scary, scary, life-changing experience.
And I am lucky that I can look forward to returning to my normal life when this is all over. Not everyone, is as lucky as I am.