Unsolicited advice from people who know absolutely nothing about my diagnosis, and quite often have not even asked me what my situation is.
You should try turmeric powder!
Have you tried CBD oil?
You definitely shouldn't be eating sugar!
My friend did a juice cleanse and now they're cured...
Eggs give you cancer, don't you know?
I know someone who cured their cancer by doing this...
How do I politely say - F*** OFF!?
Comments like these are not just something that cancer patients who share their experiences publicly (like me) hear from internet strangers - these are comments every cancer patient hears, sometimes from friends and family, or just from people they end up sharing their diagnosis with along the way.
And look, most of the time people mean well, they want to help you get better and many people are just advice-givers by nature. Especially when these comments come from friends and family - they want to help you recover as best as possible, and the media is full of so much misinformation and confusing headlines that it is understandable that many people believe what they read. People listen to and believe what they want to hear, and ignore the rest. That's forgivable. Annoying, but forgivable. Some people, like randomers who comment on your Facebook posts, are sometimes looking for financial gain from your suffering, offering bogus remedies for extortionate prices, because they think you're desperate. That is unforgivable.
I have been meaning to make a full post about this for such a long time, and although I have touched on it so many times, it deserves more attention. The impact of such 'advice' must not be underestimated and I just have so much to say on this topic.
First, I would like to touch on the fact that most cancer patients, especially incurable patients, have done their research and have asked all the questions. Normally, there is nothing anybody can tell us that we have not heard before. The countless times I have been told about the magical properties of CBD, like I was not already aware. No, I have not missed the memo. I have been diagnosed with incurable cancer, do you really think I wouldn't have done my research? Same goes with turmeric - I am well aware of it's anti-carcinogenic properties. In fact, I did spend a year or so eating turmeric every single day, drinking turmeric lattes, putting a teaspoon in my morning porridge, adding it to pasta sauces, scrambled eggs. I didn't think it would cure me, but I was willing to try it, just in case. I have stopped putting turmeric in everyTHING now, since finding out for some people it acts as a natural laxative, and let me tell you I definitely do not need any help in that department right now (tmi?).
I have almost definitely done more research than most of the people offering me this advice. I have never been told by a medical professional, a sarcoma expert, or a fellow sarcoma patient to try any of these things or remedies. Interesting, that! It is always cancer-muggles. I tried taking reishi mushroom and black raspberry supplements for a while. Heard of those? Well, apparently they have anti-metastatic properties, i.e. they have some powers to prevent cancer spreading. My dad now actually grows black raspberries in the garden! I am telling you this to demonstrate that even someone who doesn't really buy in to alternative therapies can be influenced and I am willing to try things that are backed up by some evidence and research. Nonetheless, don't you think my sarcoma expert team might have just prescribed me a diet if it was that easy? You know, the people who have dedicated their life to treating my cancer? No? I don't take the supplements anymore as they are so expensive and for me, the evidence just isn't quite vast enough to be worth it.
There is no known link between sarcoma and diet. NONE. Some cancers do have known links to diet, but in that case, it is up to the individual and their medical team to work out, not strangers on the internet.
I have always said that any dietary changes should be made with the motivation of being the fittest and healthiest and happiest version of yourself to help yourself through any cancer treatments, side effects or symptoms. Unless your medical team have prescribed it, a diet shouldn't be seen as a 'cure', ever, and certainly not in place of medicine. Being strict with what I eat and exercise I do does not work for me, it does not give me the quality of life I desire. I get so much pleasure from all food, including sugar, and I know myself and what keeps me healthy, so until a doctor tells me that quitting sugar will definitely cure me, it's gonna stay in my diet.
Sugar deserves a whole blog itself, however in sum - all of our cells need glucose to grow and survive, same goes for cancer cells. So, theory goes, if you quit sugar, the cancer cells can't grow. But, if you completely removed sugar from your diet, your other cells would not be able to survive.
Certain things can cause certain cancers. For example, smoking can cause lung cancer (but not always), an diet rich in processed and red meat increases risk of bowel cancer, a high-fibre diet can actually prevent your risk of bowel cancer.
Having a diet too high in sugar, especially refined sugars, can cause weight-gain, and obesity is a risk factor for cancer. But, even if someone who is overweight is diagnosed with cancer, you do not know what caused their cancer, so you never ever have a right to comment on their weight and how they should change their diet. Not all cancers are influenced by diet at all. I'm not sure how many times I need to reiterate that!
When it comes down to it, it should not matter what I am doing, what I have tried, what cancer I have or what caused it. Being given unsolicited advice is always uncalled for, and I wish everyone knew this already. It is a shame, because I know most people reading this blog are already pretty sensitive to the fact, and I wish it would reach the people who are ignorant on this subject. I shouldn't have to explain to everybody, that yes I have researched that, and then justify my decisions as to whether I have tried it or not. But, I feel like I have to. I feel it is my obligation to let people know that I am trying everything I can, that I have thought it all through - that I am being that 'fighter' that I DO NOT WANT TO BE, did not ask to be, and actually completely reject that I am. Alas, it bloody bothers me.
When you tell a cancer patient that they should be doing something else, trying this or that herbal remedy, what you are doing is placing blame on the person, instilling guilt. Even subconsciously. We are not made of stone. Constantly being told that you could be doing more, makes you think that if your cancer returns or spreads or becomes terminal, that it is your fault for not doing all that you can. When, in fact, you should just listen to what the experts say and know that what happens to your cancer is NOT YOUR FAULT.
When I hosted my last charity bake sale in aid of Sarcoma UK (back when it was legal in Summer 2019), I had one particularly memorable visitor. A lady who actually turned her bike around and took a break in her cycle to impart her wisdom on me. This woman literally pulled up a chair, sat with me, and talked at me for about half an hour. God, I hate how nice I was to this woman, but I knew she meant well, and I wanted her to make a donation... After me telling her about sarcoma and my diagnosis, she went on about how I can cure myself. Obviously, she had a friend, who had cancer (a different one, might I add), who did a juice cleanse... Gradually cutting down what you eat and drink, until eventually you literally just drink water. What does this do? Well, it flushes out all the 'bad' cells of course! And you must know that chemotherapy is all a conspiracy? I actually can't remember everything she said to me, but it was a LOT, a lot of rubbish, and I somehow managed to remain calm and responded very kindly to everything she said with the facts that I knew from my research and personal experience.
When you tell people 'Oh yes I do eat more than 5 fruit and veg a day, and I do eat fish at least twice a week, and oh yes, I do loads of exercise, I walk everywhere, swim a couple times a week, and go to the gym 3 times a week, oh and yes I do eat lots of different grains - brown rice, quinoa - of course! And yeah yeah of course I do yoga sometimes, and yes I put turmeric in everything, and no I don't smoke, and no I don't drink very much either... And no I don't eat very much meat at all. Oh but yeah no I do still have incurable cancer' - they will still tell you there is more that you can do, and that you shouldn't trust your doctors.
What is sad, is that this has happened to me so many times. A man once approached me in the gym and tried his best to criticise my lifestyle, asking me so many god damn questions. Little did he know, I am extremely interested in health and fitness and know my stuff and I do look after my body. I rebutted everything he said, and I think he actually was impressed! I just cannot believe the audacity of some people, and maybe they think it is their life's purpose to help people, but with me they picked on the wrong girl. Kill 'em with kindness, that's what I say. If I wanted your advice, I would ask for it, bu thank you. No really, thank you. :)
Anyway, I do have to stop this blog at some point because I could ramble on about all of this for so long. As I am sure all of my cancer friends could do also. If you have any of your own stories that you would like to vent about, please comment it down below, or drop me an email or a message on my Instagram (@madeleinecowey) or Twitter (@CoweyMaddie). I may compile them at some point and post them on here.
Finally, can I just say that we all know how horrible it is to be diagnosed with cancer, or have a family member go through it. It is terrifying, lonely, painful in more ways than one. So, if you ever want to help, and think you have something helpful to say to someone with cancer, just think, really think, before you say it. Maybe do real research, on websites like Cancer Research UK, National Cancer Institute, or the NHS website, and think about what impact your comment may have. If there is any risk of doing more harm them good, just don't say it.
I have a blog post in which I shared helpful things you can say to cancer patients in place of unhelpful things. If you are worried about talking to someone about what they're going through, are unsure of what to say, and don't want to upset them, I would recommend reading it. You can read it here: Things TO say to a cancer patients and a letter to the Internet.
Thanks for reading today, and have a happy Sunday!
Love,
M x