In four years I have gone from being a respectful and compliant patient to being a vitriolic little gobshite. There's no other way to put it and I didn't intend to become this way. I do definitely respect that often the doctors assigned to my care are intelligent, highly qualified, overworked and deprived of funds. Quite honestly, many doctors I have seen are probably depressed and despondent after years of seeing patients suffer and the only way to cope is to disconnect from the patient. It's the downside of being a doctor I would imagine, and one that most of us patients probably forget.
These days I often treat these highly worthy and wonderful people like a nursery school teacher treats the child that's more interested in inspecting the fluff in it's genitals than learning to read. I am no longer 'patient'. I found there was no other alternative. After spending a year repeatedly going back and forth to clinics and being told by registrars there was nothing more they could do for me when I knew they hadn't run any tests, forced me to become what can only be classed as a Professional Patient. I am scathing, I am often unpleasant. I often feel guilty about how I've behaved. Again, it's not because I don't believe that the people treating me weren't trying their best or weren't any good, but I never got to see the same doctor twice. With this lack of consistency there was only one point of continuity - me. I am constantly being asked to put my trust in total strangers again and again and again. Most haven't read my notes before they see me and I get tired of explaining the same shit again and again. It's just easier not to trust any of them. I do, however, like most of them. So it's a strange dichotomy.
(I will add though, that when I do see a doctor that takes an interest, shows the inquisitiveness that I believe is an absolute must for this profession, I show my gratitude absolute respect and kindness in abundance and I will put myself through many unpleasant and painful tests without complaint if I feel that person is working with me towards a good outcome. As I've said before, I have seen some extraordinary doctors and nurses across my experience with cancer. So you see, I can be a good grateful girl sometimes and am not really a doctor hater. Some of my best friends are doctors!)
But faced with this type of farcical care, I had no alternative but to turn to the only person that would fight my corner, that would fight for the very best care for me.
Me.
And with this in mind, it definitely occurs to me that perhaps not everyone is able to stick up for themselves with the same enthusiasm and enjoyment as I do - they're too ill, or too trusting, or too brow beaten or too shy, or too embarrassed. Many of us patients do not even feel that we can raise the issue of our side effects with our specialists. We feel or are made to feel or, indeed, make ourselves feel, like we are being ungrateful or troublesome if we talk about it. Or we are too busy keeping a beady eye on cancer to think about the things that are steadily stealing our quality of life.
We're also often subjected to the 5% law.
For some reason, statistics in every booklet, leaflet or pamphlet I've come across staunchly and fiercely maintain that only 5% of patients have side effects after pelvic radiotherapy (or surgery for that matter too). Only 5% have bowel problems. Only 5% have bladder issues. Only 5% have lymphodema. Only 5%.... you get the jist. Strange how it's 5% with every single issue. That in itself rings alarm bells to me. Either I'm going mad or a whole bunch of patients are being ignored or are having difficulty expressing their problems.
More than once I have been told that because only 5% of patients have side effects, it's unlikely I have symptoms. This always makes me laugh as if the expected answer is "well, now you've said that Dr Kildare, I now see that I'm imagining things or lying. Thanks for clearing that up for me".
Funny that, because the last time I was in a room full of patients who had gone through pelvic radiation, the vast majority started their conversations with "so do you have difficulty with your bowels too?"
Some brief stats to challenge the 5% law.
Roughly 13,000 people in the UK are given pelvic radiotherapy every year and almost all of them have some sort of change in their bowel habit. Half of them have problems that affect daily activities. That's quite a lot isn't it?
1 in 3 have moderate to severe problems and 3 out of 20 will eventually need surgery. It's not just me is it? That does sound like a lot, doesn't it? More than 5%? And these bowel problems have a knock on effect with other symptoms and side effects.
So this blog is to be that mouthy gobshite for people other than just me. To encourage patients to spit their dummies and become as obstinate as me. To demand good care. And to put a few ideas in your head. The more of us that ask for these changes to our care, the more that we will be listened to.
Apparently, there are 13 different reasons why patients get diarrhoea after pelvic radiotherapy. Often patients have a number of issues at the same time and, without a systematic approach to diagnosis, it's impossible to make headway. You may treat one issue but leave two more outstanding and will, therefore, not see an improvement with the subsequent treatment. It's a puzzle (hence the need for an inquisitive mind).
So here are some key things that you might want to try if you are struggling with your bowels after treatment. And by struggling, I mean if you no longer are able to leave the house first thing in the morning, if you no longer go on holiday, if you can clear an entire room with the firepower of your farts, if you can't be heard over the sound of your stomach growling and bubbling, if you find yourself soiling yourself in public, if you will only travel to places if you know in advance where every single toilet is not just in the area but on the journey there too, if you wake in the night to go to the loo. I could go on but, you know your own symptoms, you know who you are.
Firstly - ask your oncologist to refer you to a gastroenterologist.
An oncologist is a wonderful person who treats cancer, a gastroenterologist is a wonderful person who treats bowels and other GI problems. It's really important that you get referred otherwise you may end up with nothing more than a dead end and a handful of imodium.
After that, get hold of a copy of Dr Andreyev's Lancet paper ('Gastrointestinal symptoms after pelvic radiotherapy: a new understanding to improve management of symptomatic patients' - Lancet Oncol 2007;8:1007 - 17) and insist that your gastroenterologist reads it and follows the recommended approach to treating patients. It lists the many underlying reasons for symptoms, how to assess them and how to treat.
And lastly, don't go away until you are sure you have a management plan in place. Ask why you are not being given the logical tests advised. Are you not worth it???
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