Mind Your Language

More often than not it’s difficult for people to find the right words to say to friends and loves ones who have cancer. It’s not easy to work out the right thing to say and sometimes it can come out wrong and offend people, even with the best intentions at heart.

Macmillan Cancer Support recently launched a campaign on their Facebook page to help raise awareness of the language used when speaking about cancer, in the hope to start a conversation and make it easier for those in the cancer community.

Even though I can often use this language myself it can prove problematic. I am not ‘brave’ because I have cancer, I have no choice in the matter, and I didn’t decide on the path my life has taken. It’s not something I would have gone into voluntarily, and trying to stay alive is not a choice. It’s isn’t as though I am picking if I should have jam or peanut butter on my toast in the morning.

People telling me to ‘keep positive’ implies I am not allowed to show how scared I am, and therefore show weakness. I’ve been trying my best to positive for years, but do moments of sadness show that I am weak and negative? It took me a long time to accept I needed help in the form of antidepressants, and I think part of that is the expectation that just being positive would be enough to help me through. News flash: cancer doesn’t care if I am positive, or anyone else for that matter. Cancer doesn’t discriminate. Yes, It doesn’t wonders for my mental health to be in a good frame of mind, but this suggests those with negative mindsets die from cancer, or their symptoms will progress, and if a person keep positive they will one day walk free. Are the people who live the only ones that fight hard enough to stay alive? Wrong.

I am positive the majority of the time, but I have stage 4 cancer and there is no chance I will live my life without this burden, and I continue to learn to live with it as best I can. I am just getting on with my life, going to work, coming home and attempting to be normal (whatever that is!). I am doing the best I can, but sometimes the language used suggests I am just not trying hard enough!

I don’t look like a typical cancer patient and present; I have my own hair and am able to hide my portacath and surgery scars easily. When I explain my situation to new people they often seem shocked, maybe I don’t look ill enough to be a cancer patient? Especially a stage 4 cancer patient who has metastatic cancer that has spread to multiple organs. What does cancer look like anyway? Its not like an identity parade to spot a criminal. I don’t look disabled but I have a free bus pass and monthly disability benefits just the same as others who have a physical disability.

I might look well on the outside, but looks can be deceiving, so I always try keep in mind that I shouldn’t judge a book by its cover, you never know what’s happening underneath. If someone looks tired I’ll try to ask them what they’ve been up to, rather than tell them they look like they’ve not slept for days, it doesn’t aways help to be told you look crap!

I am not annoyed at others for saying something that might come across as insensitive, it’s not exactly straight forward and it all depends how I feel on any given day. Macmillan’s aim is to help change the way cancer is spoken about to make it better for those going through it. In the time is taken me to write this post I’ve seen two of their support adverts on television, so well done to Macmillan for continuing to raise awareness and helping others avoid a classic case of foot in mouth!

The Cost Of Living

I am now back living in the post holiday world of all work, very little play and many, many hospital appointments. I returned from my trip to America earlier in the week (see my vast array of holiday snaps on my instagram feed) and have already been for two blood tests, to my local pharmacy to pick up a prescription and had an appointment with a nurse at my local GP practice. Next week I’m due to visit Leicester Royal Infirmary for a consultation with my Oncologist and to receive my next dose of Immunotherapy. I also due to go to Cognitive Behavioural Therapy and have another appointment with the nurse at the end of the week. Having stage 4 cancer is a full time job, and it can become really tricky to try and fit everything in around the day-to-day life of someone in their early thirties. I have to make sure I write things down in my phone calendar and my hand written diary just to make sure I don’t miss anything, as it can be all consuming.

Despite my obvious frustrations and the frequency of these appointments it’s all part of my life living with cancer, a term I’ve coined ‘operation stay alive for as long as possible’. Each time I have to remind myself how lucky I am be able to have access to the National Health Service and everything it offers. Despite the constant bad press hospitals up and down the country get about long referral list and A&E waiting times, I still love the NHS.

The NHS turned 70 last week; having been born ten weeks premature I have benefited from various services my whole life and I certainly wouldn’t be living the way I am today without it. The resources that are put into cancer care have kept me alive 8 years after being told I’d probably only have about 18 months to live. I may have to travel a long way for my treatment, which is partly through choice, but I would take that any day over the alternative. My hospital have been amazing from the get go and I feel safe in the hands of the specialist teams there.

The cost for me to live is phenomenal; I read that Pembrolizumab costs over £1000 per 50 mg and the recommended average treatment every three weeks is approx 200mg. It’s definitely not small change! I know I wouldn’t be half as fortunate if I were born in another country, so when I get upset, frustrated and angry on my way to appointments I have to remind myself that the cost of living is high, but I am one of the more fortunate people. I guess it is Ok that there isn’t any free wifi or free parking with a Blue Badge at my local hospital if they are keeping me alive – it’s far cheaper than paying for private treatment elsewhere! My status as a member of the cancer club means I also received my prescriptions free of charge. A few years ago I had two cycles of another drug, Ipilimumab which cost that NHS approx £20,000 per treatment. I was initially meant to have four cycles but my cancer began to grown more rapidly and I had to quickly swap to oral drug Vemurafenib (another costly drug) in order to try and stabilise the disease before it killed me.

According to the latest publicity report the NHS treats more than 1 million patients every 36 hours, the maths to work out how many that is across one year is far too much for me to comprehend. I really hope Brexit doesn’t have a negative affect on the treatment I receive and impact the potential for any newer life extending drugs that may be developed in the future. The NHS and the wonderful people that work for it are there from the moment we enter into the world until the moment we leave. The NHS will treat patients no matter what; it’s a service for everyone regardless of status or background, rich or poor, young or old the NHS caters for all. Here is to another 70 years and more.

Thankful to still being kept alive.