You don’t need to deal with cancer alone. This module covers online groups, cancer specialists, non-profit organisations, charities and more.
Here’s a review of the main ways to get help from:
1. Friends and family
2. Online groups
3. Charities, non-profits
4. Drug companies
5. Medical professionals
6. The Media
This is the first of 10 modules for this course. I’m putting together this course because it’s the sort of thing I wish I had had six years ago, when I was diagnosed with terminal cancer and I knew nothing at all. Well, I knew that cancer was something that happened to other people, particularly people considerably older than me, and I was relatively fit and healthy, so it was just of no interest or concern to me. Little did I know what was going to happen.
This first module is all about Getting Help. I think that getting help and getting the right kind of help, and knowing how to ask for help in ways that get good results – that’s a key thing that has got me through the past six years and also got me to this point after six years, when I realistically had possibly a year to live, or or probably less than that to be honest.
I’m going to talk about the various kinds of help that I’ve had, and the ways that I’ve managed to engineer that. One really important thing I want to emphasize is that it’s really important to do lots of things at once. I think all of us have a natural tendency to do things and wait for the results and then move onto the next thing. But that’s not a strategy to get through something as serious as cancer. I talk to a lot of patients around the world who are asking me about different options and especially the cutting edge treatment that I’ve had, and also cutting a treatment that I’ve heard of other patients having. Typically, people ask me about these things, and then they’ll be very happy to hear that these treatments exist. They’ll say, “Oh, I’ll do that if my current treatment fails”, or “I’ll do that when chemo stops working or whatever”, and that is not a good strategy. That’s not a path to getting better, unfortunately.
The same kind of thing- just with finding options right, you need to find out about multiple treatments at once. You do not wait to hear from one specialist before moving on to another one. We’re not in control of how long people take to give us the information that we need, so if you’re asking people for help, it makes sense to set aside a block of time and do a whole load of it at once.
For example, I think maybe many of you are here because I recently got some attention from the British media. It’s mainly from a newspaper called “The I”, which is allegedly Britain’s “most trusted newspaper” (I don’t know if that counts for a lot!). I reached out to 13 journalists, (not even journalists actually, health editors) of all the main newspapers in the UK. I said I’m doing this course, and I’ve got this amazing story, and two replied – two! Fortunately, one of them was a journalist at “The I” (a health correspondent at “The I”), and that’s the reason this course has got off to a good start, is that media attention.
If I had emailed a journalist and waited, and maybe got the courage to email another one after a couple of days, maybe I would have given up at the third try. But the fact that I just sat down and sent out 13 emails at once, stacked the deck in my favor. So a lot of this is about looking for all the options, and getting things ready.
So if you’re going to do crowdfunding, (which I had to do because I had no money when I was diagnosed with cancer – I worked freelance) so when the cancer diagnosis happened and I started chemo and things, I couldn’t work and thus did not get any money. If you’re going to do crowdfunding, it is best to start it right now, because it’s better to have the money and not need it, than to need the money and not have it.
Cancer is very expensive and sadly, it’s one of the things where money makes a lot of difference. Not just paying for treatment, but just very simple things, like having the money to have a taxi home from the hospital after you’re feeling rotten from chemo, instead of having to ask a family member to come and get you. Money sadly makes a difference. I think that’s a terrible situation, but that’s a discussion for another time.
Getting help all at once is something that I learned pretty quickly early on. If you’re going to get information from specialists, you want to contact a load at once.
Things like, contacting pharmaceutical companies, especially in countries with Universal Healthcare .You wouldn’t imagine that you can just contact a pharmaceutical company and say “My chemotherapy stopped working. I can’t get into a clinical trial. Could you give me some advanced treatment for free?”. Sometimes they will- there are various terms for it, it’s usually called “compassionate treatment”, and essentially what they’re doing is they’re doing a trial of one.
Pharmaceutical companies often do something called “post-marketing surveillance”, which basically means the drug has been approved for general use. So it’s gone through the three phases of trials, which I’ll talk a lot about in the clinical trial module. But the three phases of trials: phase one – checking if the drug is safe ; phase two – checking it works; phase three – checking how well it works and if it’s better than standard care. Drugs that have been through that, often still have more kinds of trials and case studies, which is called “post- marketing surveillance”. So it is worth contacting drug companies, and seeing if they will give you some drugs.
Again, don’t contact one and then be upset when you get a formal email back, saying “sorry but no.” Look at all the drug companies that have related drugs. For things like patented drugs, which of course most cancer drugs are, many of them are now at the end of the patent. That means that there are drugs called biosimilars available, which are drugs that works the same way, but it’s just changed enough for the other pharmaceutical company not to have to pay the one that invented it, so it’s called a biosimilar.
One general point I wanted to say about getting help, particularly from friends and family, and this isn’t a nice thing to say, but people’s skills and knowledge and attitude don’t just magically change because you’re in a very difficult situation. People who were unreliable before your cancer diagnosis, they’re not going to be magically reliable, they’re not going to be magically competent and skillful. Obviously there’s some bitter stories that I’m not going to share, but people don’t become amazing just because you have a very serious disease and need their help.
Hopefully, you get unsolicited offers of help and I found the best way to deal with these is to ask for something very specific. So when someone says “I’d love to help, let me know what I can do”, or “I’d love to help, I’m not sure what I can do”, then give them something small and very specific to do, like “I’ve got chemo next week, it would be lovely if you could come along”, or “it would be lovely if you could pick me up afterwards” or “I’m feeling really grim at the moment, it would be really handy if you could do some shopping for me”. Then you’ll very quickly see who your friends are.
I found early on I had people who were semi-reliable, offering help, or wanting to be involved, and I found it’s very good to deal with those people as a group. I’m sure you’re familiar with the “80-20 rule”: 20% of the people get 80% of the results, so dealing with people as groups, I found, was really helpful.
I’m going to cover crowdfunding in another module, but a big mental shift for me was when I realized that crowdfunding gives your friends and family a very straightforward easy thing to do.That’s very good for you and I now strongly believe it’s good for them, because people who care about you, do want to help out and they’re not sure what to do, and they’re not sure about emotional distance. They often don’t know what to say when they’re with you.
So crowdfunding is fantastic because especially if you don’t ask friends and family for donations, which I find incredibly uncomfortable doing, but I just say “Would you mind telling people about my crowdfunding?” or “Could you share on Facebook or some other social media?”.I found that’s a really good reason to get started with crowdfunding quickly – you’re giving people a very practical way to help out.
I found that during my four years of very tough treatment (I was doing chemo, I had big surgeries, I did a lot of radiotherapy, I was doing immunotherapy (which had no side effects at all really), I did something called hyperthermia therapy which involved heating the tumors to get more chemo drug into them), I found it was really useful and motivating to have people just with me.
Recently that wasn’t really possible with coronavirus. For example, when I did surgery last year in July here in Tokyo, the hospitals banned all visitors so family couldn’t come and visit or anything like that. But a couple of years before when I did liver surgery, friends came to visit me, and that was really helpful because I was in quite a bad way after liver surgery. One thing I did for that liver surgery, which I’m really glad about, is that when my friend said they’d come and visit, I always said “Would you mind bringing a present, not for me, but for the nurses?”. I think I was the only patient in the history of that hospital, in Northern Japan, whose friends all came bringing presents for the nurses. I just got them to bring candy which they give to the nurses to share out. I think that was much better than them giving me things that I wouldn’t want to eat because I was kind of feeling incredibly bad. The drip in my neck got infected, so I had maybe a very mild form of blood poisoning, like a bacterial infection that was not in a good way, so I wouldn’t have wanted boxes of chocolates from my friends. But having presents for the nurses is fantastic. So things like that you can do.
Online groups can be very supportive and very helpful, or they can be very toxic. I’m sorry to say that I’ve heard that many of the ones for women’s cancers can be quite unpleasant sometimes. I have no idea why, but the breast cancer communities tend to be pretty appalling.
With online groups, please beware of scammers. One thing you can do is, when you’re messaged directly in an online group, always check out the person’s profile. One of the things I always look for is are they part of a pyramid scheme. So apologies to any of you who are part of a pyramid scheme, but for those of you who aren’t, do watch out for people in pyramid schemes. In their profile, it will say things like they are an independent consultant or an independent distributor, and they’re often trying to push some kind of supplement, or green smoothies or whatever. So look out for that kind of language.
Just checking on people’s profiles in the colon cancer community, everyone is trying to push various cannabis-based things. I’ve never looked into the medicinal use of any of that kind of stuff – I’ve heard it’s maybe useful for some people for side effects, but certainly it’s not going to magically shrink your tumors I’m afraid.
So you might get people trying to market that kind of stuff to you. Again, one of the ways you can see that it’s a marketing thing, is select some of the text, paste it into Google, and see if results come up. Because if they’ve written that message to you, it should not appear on a whole bunch of websites trying to sell stuff. So can very easily see if things are real, or at least you can see if they’re fake.
It’s also worth websites like Science Based Medicine and even Snopes (I’ll obviously put all this stuff in the notes for you -I’ll send you a pdf in a few days about that). Snopes is the internet organization that checks myths. They cover a lot of medical stuff, so you can Google. If you google “alkaline diet” or whatever, you can find out on Snopes about some of that. So people are pushing that kind of stuff.
I also think it’s important to watch out for something called “toxic positivity”. That’s where you say that you’re in a bad situation, and a bunch of people then message you or reply to your posts, about how your negative attitude is making everything worse or whatever.
I’m a very cynical, negative, skeptical person as you can probably gather, and my negative attitude has probably increased my survival! I think that some of the groups are really useful.
Some of the bigger cancer charities and cancer non-profits have online groups as well, that are not on Facebook or Twitter or anything, but actually on their own websites. Those tend to be, I’m not going to say policed, but they’re kind of moderated, so they have staff checking out those things. So those groups can be a bit more useful. You can just search for your cancer type on Google, and search for non-profit or charity, and some of those will have an online forum where you can talk to people with the same kind of cancer as you.
Just on the point of online groups, I think it’s useful to be in some groups that are very specific to your diagnosis, and then also some groups that aren’t. Because one of the big changes in oncology over the past few years, is that it’s getting easier and easier, or better and better results from using a treatment for one cancer or one group of cancers, and using it for presumably unrelated cancers.
A very famous example of this is that 10% of people who have colon cancer, have the her2 mutation, which is a very well known breast cancer mutation. That means that for those patients, they may get good results with certain breast cancer drugs that target her2. So that’s really worth doing, and which actually brings me on to a point about self-education.
Obviously a group of people who should be giving us a lot of help, are the medical professionals and one thing I found is that the more you educate yourself, the smoother it is, especially if you are asking for things that the medical professionals are not used to dealing with, eg “I’ve heard of this new treatment for rare pancreatic cancer – would it work for my colon cancer?”.
You can imagine how frustrating it is for an oncologist when a patient will hear about some wonder treatment on the internet, and ask the oncologist, and the oncologist has to say “well that’s for very early stage people with a completely unrelated cancer to you”. But I found the more you know the details and know the language, and the more accurately you use it, it does wonders for the attitudes of clinical professionals.
I had a very fierce oncologist at a University Hospital here in Tokyo (Doctor Ichikawa), and he was involved in inventing one of the chemotherapy protocols here, the”Iris protocol”. So a fearsome guy with a big reputation, and when I first went in to meet him and I said I’d read about these treatments,, he was very dismissive. He asked me where I read them, and I said the New England Journal of Oncology, which is one of the world’s most respected oncology journals. The attitude changed in a split second. I wasn’t someone reading things on a completely underground odd web forum. I was reading stuff on medical journal websites.
So getting the good information is really important. Most of the big cancer non-profits and cancer charities have some information on the website – some of which is good, some of which is not so good.
Macmillan in the UK has loads of guides that you can download for specific cancer types, and also stuff about specific treatments and also a lot of stuff related to cancer. If you are in the UK, they’ll actually send you printed copies. You’re not going to be able to see this very well because of the chroma key, and it might be flipped as well, but this is “Understanding colon cancer” which is a little book that Macmillan sent me, and you can download the pdf for it. If you’re in the UK, they’ll send it to you for free. They also have ones like “Talking to children and teenagers when an adult has cancer”, so that’s some really good stuff.
There are links to Macmillan publications on my website https://www.makecancerhistory.jp/ and I will put them in the pdf for you as well.
It’s really good to get printed guides and take them to your medical appointments. Again, it changes the attitude of medical professionals. Charities can also give you some help. Some of them can give you financial help, some of them can give you free advice – not medical advice generally, but free advice and can point you in the direction of lots of other sources of help, particularly financial help.
If you are receiving state benefits or whatever, and there are issues around that and medical treatment, it’s worth talking to some of the cancer charities, seeing if they can help you or if they can introduce someone who can.
Macmillan in the UK has a helpline where you get to speak to nurses, and that got me through a lot of very tough times. You can call it from anyone anywhere in the world -I was calling it from Tokyo, late at night here, mid-morning in the UK. Some of the Macmillan nurses are seriously good, and they’ll do things like tell you questions to ask before surgery. They will give you a lot of emotional support and also a lot of practical information as well.
So just out of interest, if you are in the UK, can you just type “UK” into the chat, because there is a specific point I want to just mention.
In the UK, it is difficult to speak to medical specialists directly. The way things typically work is you’re in the care of the oncologist, and hospitals have a meeting usually once or twice a week, called the MDT meeting (multi-disciplinary team meeting). This is where they discuss the important cases at the hospital, of which yours as a cancer patient, is automatically one of them.
It’s really important to try and fight for some access to specialists, because the problem is if you’re getting all the information second hand from the oncologist, a lot of the details are lost in translation.
To give you a very concrete example, imagine three patients where the cancer spread to the liver and it’s from somewhere else, and the patient has said to the oncologist I’ve heard about radio-frequency ablation. RFA is an alternative to surgery and potentially an alternative to chemo. The oncologist goes to the meeting and there’s maybe an RFA specialist there. The oncologist talks about your case and asks if Matthew is a candidate for RFA, based on this clinical situation. Let’s say with Patient A, the patient is not a candidate, because the tumors are close to a blood vessel or near some nerves, and there’s not a good path to do. RFA is where they put a needle into the organ or the tumor, (if it’s in the lung or whatever), and heat it with radio waves to ablate (which means destroy) the tumor.
So patient 1 is not a candidate, because there’s no good path, based on a recent MRI scan. Patient 2 – they’ve got lymph nodes with cancer as well, and the RFA specialist says “nope, not going to do it because the person’s got cancer in the lymph nodes”. Patient 3, let’s say they’re rejected because of the size and number of tumors.
Now in all three cases, an oncologist might just say “Sorry, the RFA specialist said you’re not a candidate”, and that’s a really big problem because in the case of someone with lymph node involvement, maybe the lymph nodes could be treated in another way, but the patient wouldn’t go back to the trying to get RFA, because the patient never heard that the problem was lymph node mode involvement.
In the second case, where there’s no clear path to get to the tumors, it could be that a different RFA specialist at a different hospital using a different technique could make it work.
For RFA, there are a bunch of different techniques. There’s ultrasound guided, there’s scanner guided. there’s a one-step process where they put in a needle, there’s a two-step process where they put in a sleeve and then the needle goes in.
There’s a related treatment called MFA – Microwave frequency ablation- which is good if the tumor is near a big blood vessel. MFA is kind of more powerful so it heats more if a tumor is next to a big blood vessel. That might not work for RFA, because the blood vessel is cooling the area, because there’s blood flowing past all the time.
Then in the third case, again, if an RFA specialist says “Sorry we reject the patient because the tumors are too many in the liver and too big”. A different RFA specialist may have a very different opinion on that. They may say “Yes they’re big and you’ve got a lot of tumors, but we could maybe try 3 sessions of RFA”.
So in all these three cases, the message gets passed on as “Sorry, no RFA”, and this could make you give up on what could be a really viable treatment. So that’s why it’s really important to try and get access to specialists, even if you have to fight.
Now there is a way in the UK that you can get direct access to specialists and sadly you pay them, because all Senior NHS people are doing a day or a couple of days a week at the local private hospital as well.
So that’s a way that you can get instant access. It’s heartbreaking, I think that’s a terrible situation but it is the reality. You can wait, you can be on a waiting list for treatment or you can pay to get it done privately, and it will be the actual same person doing the procedure, getting very comparable level of care but without the waiting.
So I’m going to wrap up now and then take your questions. I’m going to talk about trials in another module, but access to trials is greatly improved if you get some or all of your treatment at a University hospital, and that’s also a good way to find out about not exactly trials, but little case studies and things that are going on. It is really worth just contacting University hospitals as well. Here in Japan, situations may be different. University hospitals here tend to be ultra conservative- they make the treatment guidelines for all the hospitals and they’re strict and conservative. The small clinics are often where maybe a university professor has left the university and set up their own clinic, so that they’re not dealing with the committees and bureaucracy and stuff.