The Abyss

Where to begin? Well, about 4 and a half years ago I was diagnosed with cervical cancer. It jumped up and bit me and so I bit back. I was devastated and my loved ones were devastated and then, between me, my husband, family, friends, doctors, nurses and homeopath, we fought hard and we won. 


In truth, I'm not going to talk about the cancer much. I could be droll at this point and rip off one of my heroes and call it "It's not about the cancer" (in fact, one of my best survivorship moments came watching Lance Armstrong compete in the Tour de France last year with my husband, who is an avid cycle fan, at my side), but I won't. And with 1 in 3 of us now being affected by cancer, it gets a fair amount of attention and a bunch of people do amazing work both in terms of treating it and saving lives but also the patient groups and charities such as Jo's Cervical Cancer Trust who perform vital work supporting patients.


What I'm going to talk about is what happened to me after that life saving treatment.



When I was diagnosed with cancer in 2006 I wasn't sick. I went from well and healthy to being as sick as a dog. Cancer didn't do that to me, treatment for cancer did. And between the cancer and the cancer treatment, I was stipped of my dignity, my health, my fertility and, in some respects, my identity. All of my relationships are changed and no one looks at me the same.


My treatment for cancer was chemoradiation. A canny little mix of Cisplatin chemo once a week, pelvic radiotherapy every day Monday to Friday for 8 weeks and finished off with a couple of brachytherapy for good measure. There was also a bit of surgery to take out a few hundred lymph nodes. The treatment was tough, brutal and barbaric but necessary. I lived. The whole process from start to finish was shocking and my body hasn't truly belonged to me since. I sure as hell no longer trust it. It lets me down frequently.


I have been left with radiation damage to my bowel, bladder, reproductive organs. None of those fellas work properly anymore. I have lymphoedema, nerve damage and constant pain.


It is important to note at this point that not everyone gets these side effects. Many patients experience very few long term side effects. But, for some of us, our quality of life is greatly affected.


Now, before anyone saddles up, yes, of course, I am glad to be alive. Very glad in fact. And I do sometimes definitely have powerful what I like to call 'survivorship' moments when I am overwhelmed by a sense of feeling amazingly fortunate. But, and this is a big one even to admit to myself, there have been times in the last four years when, after fighting so hard for my life, I found that life was not worth living. There, I said it. So sue me.


We all like to think that after surviving cancer, surely patients must be filled with incredible perspective, unencumbered by the trivial and are doing naked cartwheels constantly with the sheer joy of living. Brave soldiers that made it through the war where others have perished. Sorry to burst your bubble folks. That to me represents the politics of cancer and I simply don't subscribe to that. In fact, I'm fairly sure if I were to try a naked cartwheel or a cartwheel of any kind, I might just shit myself with the state my bowels are in!!


The plain truth is that for some of us who have had pelvic radiotherapy, our continued existence came at a high price. It's also true to say that there are many people who don't want to hear that truth. The average person only wants to hear the triumph, some fellow cancer patients feel like you're letting the side down and, shockingly, many health professionals feel that you should just go away and be grateful.


But I wouldn't go away.
I won't go away.


When you listen to the most inspiring oncologists speak, they openly say that if a life is worth saving, then you should save it in a way that they actually have a quality of life to go on with. 


The first time I heard one of these truly inspiring oncologists speak I felt moved. That's kind of the essence of what this blog is about. That was what I was fighting so hard for. A life worth living. And there were many times when my side effects were so bad that I couldn't leave the house much and just seemed to lurch from toilet to toilet (which believe me, in the UK, especially London, is not easy). However, my experience has been that there are oncologists who do not appear to share those views. There were also gastroenteroligists that also didn't see it that way.


When it became apparent that my side effects from the treatment were long term I was to hear the words "there's nothing more we can do for you, this is what you're left with" many many times. I just didn't believe them. When you start shitting yourself in public and simple bodily functions cause you so much pain, surely that can't be it? I chose not to believe that.


So I tried every quick fix treatment on offer. I had Imodium and Buscopan thrown at me until I developed reflux. Then I was given Nexium. It was apparently acceptable to just add more pills to my heavy regime with very few logical tests being given. I have been poked, prodded and scorned. I've had the backdoor paparazzi in, unsuccessfully, several times and it's safe to say that my poor arse has now seen so much action that there is no hope of dignity returning to my life any time soon. I was told, yet again, that there was nothing I could do, I should just take as much Imodium as I could possibly tolerate until there was no chance of my bowel moving. Which of course, didn't work, my bowel refuses to be tamed, it sneers and flicks the V's at imodium. I was also told to go away. Again and again and again.


Four years of being told to go away and stop complaining. Be a good cancer patient, be grateful we saved your life and go away.


It was around about year 3 that I first heard Dr Jervoise Andreyev speak. I sat and listened in half horror and half hope as I listened to this man go through the symptoms of someone affected by Pelvic Radiation Disease (PRD - which is what I have), the sensible tests that should be carried out and how to treat the subsequent diagnosis. He urged everyone affected by PRD to demand better care. I went away confused. I wasn't sure that I had had any of the tests he talked about but I certainly recognised the symptoms. 


About 6 months later, I saw Jervoise talk again. This time the man pledged openly, in front of a room full of people, that he could improve the quality of life of any patient with PRD. He went into the specifics of the tests that should be run on a patient. I sat there quietly, my eyes prickling. I was fucking furious! I allowed the realisation to set in that I had been treading through treacle for 4 years being told there was nothing more they could do for me when they hadn't done a single one of the tests that this man was talking about. I felt like I could barely breathe.


I went home and felt lost in those thoughts for many days. I was crippled with anger and didn't quite know what to do with it. I had always refused to believe that I had hit the end of the road and I was right.


The final straw came when my specialist's appointment was canceled yet again. This meant that I would not have seen anyone who could help me for over a year. So this was they meant by 'self management'. Patients struggling on their own. Thrown to the wolves. Well I figured, if I was on my own, then I would start making the right choices for me and stop being at the mercy of others. I contacted Jervoise who very kindly took me on as a patient immediately. After waiting 4 years, he correctly diagnosed me within 4 weeks, put me on a new regime of meds and I was put forward for hyperbaric oxygen treatment. How was it that he was able to diagnosed me in such a short space of time after I had waited for so long? Literally years had galloped past me whilst I was putting up with bad (well, non-existant if I'm honest) care. Of course, Jervoise insists that it's not rocket science but just a few logical tests. But isn't that just typical behaviour of someone who makes a difference to so many lives? Modest and only interested in doing his job well.


So, all in all, my aim for this blog is 3 things;
Show my journey through 8 weeks of HBOT, 
highlight the plight of those living with pelvic radiation disease and, most importantly, 
urge patients to not put up with mediochre or rubbish care but to make sure that you're being given the right help and support to improve life after cancer. Don't stand for anything less, you deserve nothing but the best for your life and you should not be afraid to ask for it and, if no one listens, insist and be a royal pain in the arse until someone helps you.