Yesterday marked 11 years since I was diagnosed with a locally advanced rare Gynaecological cancer. Since then, I’ve tried to raise awareness of cancer in young adults (i.e. 18-45), created and host a fundraising VW Show for a local cancer charity, and try to help other ‘cancer people’ deal with their experience.
However, what is rarely mentioned and I certainly wasn’t told by my Doctors or Medical team, was the profound impact of the long term effects of having had cancer under 40; especially a pelvic cancer which was subject to many Gy of radiation and caused severe long-term damage; the full extent of which I am only starting to experience now.
About 2 years after treatment ended, I started to get bone pain in my hips in the area of the radiation, but also suffered occasional bowel problems (in the form of diarrhoea or urgency when I ate/drank certain foods - usually with caffeine in).
It wasn’t very often though and although I knew it was a side effect of radiotherapy, it was tolerable. However, about 2-3 years ago, it started to get worse; more often, and I started to have to be careful of what I ate/drank. I started researching ‘late effects of pelvic radiation’ and discovered that ‘pelvic radiation disease’ (PRD) is a thing; and I most certainly have it.
Now at 11 years, it’s almost intolerable. I have to be extremely careful about what I eat/drink, sometimes it even flares up for no apparent reason, which makes one anxious and depressed due to worrying about one’s damn bowels all the time! >:(
Isn’t it bad enough to have a Gynaecological cancer under 40, a stigmatised cancer, a cancer for which the treatment is humiliating and painful; ruins your body image and your sex life, brings about premature menopause?? Adding insult to injury, I essentially have radiation-induced IBS-D. In discussing our problems with other cancer people who have PRD, and people who have IBS-D, it is apparent that it ruins lives. You can’t eat what you like, you constantly have to worry about being near a toilet; and having to go 3-6 times within an hour if you have a flare-up! Anxiety makes it worse, but of course, you get anxiety worrying about your damn bowels all the time!
It’s embarrassing beyond belief. How can you feel good about yourself when you’re constantly having to poo? How sexy is that? FFS, how can you move forward from your cancer experience when the late effects of that experience get worse. (PRD is a progressive condition and can sometimes worsen over years, or even occur decades after cancer treatments ends :o )
It makes going out difficult. I work in Film and when you’re on Set in the middle of a shot, how the hell can you get away if you a get a flare-up? Sometimes it comes seemingly out of nowhere and is so sudden, it threatens disaster. I’ve been caught out a few times, and it’s bloody horrid.
I never had anxiety or depression before stupid cancer, but now I do. I also have PTSD (triggered by snow as I was in Treatment in Winter time) and snow brings back the horrible vivid taste of chemo, the smell and sounds of the hospital and the sense of doom and surreality of having cancer in your 30s when you thought yourself one of the healthiest of people. I was Vegan, straight-edge, a Pentathlete, ina monogamous relationship, and never had an STD. I was incredulous that I could even get cancer.
This stupid PRD isn’t easily addressed. Doctors are hopeless; they just tell you to take Loperamide (which actually makes me ill), or Buscopan (which helps with the cramping, but doesn’t actually make you not ‘go’ :/ ). You fear that if you can control the dreaded diarrhoea or urgency, you’ll just bung yourself up and then have that problem. It’s a bloody vicious circle with no real viable solution.
Shall I not eat? How do I live my life when I like to ride, hike, swim, be outdoors, work on Set, and travel?? All those activities are affected by PRD and you worry all the time if you’ll have a flareup and be ‘caught out’.
It’s fecking rubbish. What makes it worse is that nobody ‘normal’ can possibly understand the difficulty and they seem to think that since it’s 11 years since cancer, that I should be ‘fine now’. Erm, no. >:(
I considered not writing this. Why the hell should I tell everyone that I have ‘poo problems’?? :( However, I think it’s necessary that people be made aware of PRD and know that it’s debilitating and horrible, and is a direct result of a treatment that is meant to save your life. Sometimes that life becomes a living hell though, that you are just fighting to survive.
I’m not giving up though, but at this point, I’ve earned the right to whinge and everyone who thinks I can just ‘suck it up’ or thinks it isn’t ‘that bad’ can fuck right off.
