Still so much Ignorance surrounding cancer!

Hi Harebelle,

I know what you mean.

I often waited in the M&S cafe when I was on treatment days as I felt less anxious there and always went to the cancer unit at the last minute. 

I think the classic cancer patient shown in the film industry and described in books is often far removed from reality. I had a variety of medications, treatments and also did scalp cooling and some days I looked rough and other days I  looked fairly well. I was just trying to get on with the treatments and to do things when I felt able to.

Jane

So true, Jane.   

I sometimes worry that I dont look sick enough

The days when  I do look sick and have no energy are when I'm. more likelyto stay close to home.   

But , when I feel  goiod, I chuck on the war paint, put nice clothes on, and I'm out there. 

So thinking about it,  people rarely see me at my worst.

Harebellle said:

I think General Joe Public have an outdated view of how people with cancer look. and they don't realise that there are lots if different treatments, that all have different side effects

I think it's probably also a bit age related.  It's not that long ago when effective treatments were few so there's at least one generation of people whose personal experience has been only knowing people with very advanced cancer.

Joe Public does still tend to equate cancer with chemo and chemo with hair loss, even though neither of those things are necessarily true.  And of course Joe Public doesn't see us on our bad days and has no idea of how many drugs might be involved in us being able to leave the house.

This is such an interesting subject and over the years I have seen the perceptions and understanding of having and living with cancer definitely changing....... and I think for the better but there is a long way to go. We still have to fight the stories that are handed down through our families of your 'grandads sisters husbands dreadful journey'.

I do think that as people living with our cancers we have the power to try our best to change the narrative, not everyone is comfortable in openly talking about their cancer journey....... but the more honest and open we get will slowly challenge the misconceptions and change Joe Public understanding and narrative.

I am now over 24 years into my journey navigating living and being treated for a rather rare type of incurable blood cancer - Non Hodgkin's Lymphoma (Mycosis Fungodes)  .... and the fact that the word 'cancer' is not automatically put at the end of blood cancers..... so you don't normally hear the term Lymphoma Cancer, Leukemia Cancer, Myeloma Cancer....... people initially have no idea that a 'blood disorder' in their minds is actually a cancer......... and the fact that Lymphoma is the fifth most common type of cancer in the UK (after breast, lung, colon and prostate cancers) it's amazing the lack of understanding.

Blood cancers are often seen as an invisible cancer and as you don't have surgery to remove a tumour mass (although surgery can be used where there is an immediate risk to life) it is often seen as not being "a real cancer'!!!!!!!....... but it definitely was a 'real battle' for me (See my story)

For the first 12 years following my diagnosis I was working a demanding teaching job on a full teaching timetable and was fitting in regular treatments for about 15 weeks each year and still working.... people kept saying that it can't be a serious cancer I had as I was still working, getting on with life and never looked ill......... but I saw this as an opportunity to educate them so they understood that having cancer did not put everyone living with their type of cancer into a 'one size fits all' cancer box.

When you get asked questions be honest and look to change the understanding and the narrative 

I felt odd when people asked why I hadn’t had chemotherapy or radiotherapy.The type of cancer I had doesn’t respond well to either.I did have nearly 10 hours of life saving surgery though and that took a year to recover from.I did look really unwell at the start so I had to tell neighbours as they didn’t like to ask.My next door neighbour told me I looked ghastly and I was a bit shocked by that.She had gone through cancer herself and I would never have said that to her.Jane 

Each journey is ever so different and it took 14 years before my condition developed to the point it was ‘very’ visible and that my general physical well-being was effected.

Living with a life long incurable but treatable cancer is just one big rollercoaster so you make the most of the good times, tolerate the challenging times and ensure that the people around you know when the road is rough as this is the time when my family and zi had to have support.