More and more often I’ve been finding that people don’t seem to realise or appreciate how unwell I am. I’m lucky that I currently look well on the outside and don’t have any visible signs of a disability, therefore people often dismiss it, or wrongly assume that there will be an endpoint to my treatment.
Very few people see me at my worst; hooked up to iv drugs in the chemotherapy suite, or lying in bed all day with no energy to move or get dressed. It’s not exactly a case of what you see is what you get, there is so much more going on. I guess it’s hard for outsiders to comprehend what lies beneath the surface. It doesn’t help that I constantly play things down for my own sanity, I act the part of someone who is 100% healthy because it makes me feel better. My A Level Drama classes have finally come in handy.
I’ve recently learnt that the blue Transport for London ‘Please Offer Me A Seat’ badges are to be rolled out on a permanent basis. I took part in the initial trial of the badges with TFL towards the end of last year. I found it to be helpful, however I think the general public need to be made more aware of the scheme in order to make it a success. Before the badge was introduced one of my friends actually wrote to TFL about the lack of awareness for disabled people on public transport, so it’s good to know the public are being listened to. I hope this will make a real difference to people with invisible health conditions, myself included. My original blog post about the trial can be found here.
I have various signs of illness, however once I cover my head with a wig and cover up my portacath and scars, I look just the same I anyone else. Perhaps in some ways it’s the ultimate disguise. For the most part, this is a good thing; I can pretty much go about my daily life without it being obvious I have cancer. Having ways of disguising my condition does wonders for my confidence. I know I can’t win and I want people to understand my situation, but I also don’t want to be treated any differently. I don’t want people in the street to see I’m unwell, but I also want a greater awareness and understanding too. I’m just going around in circles really!
Since making my blog public I have found it liberating and also very helpful, it allows me to speak freely and honestly about living with Stage 4 cancer. Others have commented that it has helped to give them a better understanding of what I am going through on a daily basis, but most of all it means I am not feeling so overwhelmed by it all!
With immunotherapy treatment there aren’t too many side effects, certainly less than I’ve had with other treatments (yay for eyebrows and hair beginning to grow back). Pembrolizumab doesn’t work in the same way as traditional chemotherapy.
When I was first diagnosed with Stage 4 cancer I was told the average life expectancy was 18 months. Six years on I’m still here and I’m sure that sometimes people must think I made it seem worse than it was, however due to advances in treatment and timing being on my side, I seem to be one step ahead of cancer for now.
People cannot see how unwell I am, however we cannot see the air that we breathe, but it doesn’t mean it’s not there. Yes, I’m still really really unwell, if not more now than I have been over the last few years. No, treatment will never finish, and no I will never be cancer free. That’s just the way life is.
But for now, between my ultimate disguise, my TFL badge and my blog posts, I can try to achieve a sort of strange balance of being treated normally but with consideration for my condition, whilst also raising awareness of Melanoma.