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Wilkommen to my blog - my name is Karin Purshouse, and I'm a doctor in the UK. If you're looking for ramblings on life as a cancer doctor, my attempts to dual-moonlight as a scientist and balancing all that madness with a life, you've come to the right place. I'm training to be a cancer specialist, and am currently doing a PhD in cancer stem cell biology. All original content is licensed under a Creative Commons Attribution 4.0 International License.

Wednesday, 23 June 2021

Close to home

 Being a cancer doctor, I thought I knew a thing or two about grief. Beyond my professional experiences, I lost close friends in an accident when I was a newly qualified doctor - grief was something I shared with my friends at the unexpected age of 24. 

I am now in the middle of messy, aching grief.  Just over two months ago, my father was diagnosed with cancer, and he died a month later. In the month that followed, we went on to lose two other close family members. It feels a little like we are bathing in grief.  

Losing my dad feels somewhat unreal, probably because I've only just scratched the surface of what it means to have lost him.  We have all read notices like this - died at home after a short illness.  You realise who can read between those lines, and imagine the struggle that went on behind the scenes to achieve that brief, peaceful sentence.  As a doctor, and a cancer doctor at that, it was to live a double life.  It was to have the world's worst insight into the future, to know what was coming, to know what it would look like, to know what needs to be done (and how to ask for it), to feel both powerless and responsible. Of course all of that can't prepare you for the reality of it all. The truth of the struggle is hard to put into words. What to say, and to whom, and when. People imagine that as a doctor, you have this ability to override things, but that suggests that our families are passive, unintelligent people who don't want to have agency and autonomy, and that we function in isolation rather than the necessarily multi-layered system of healthcare.  The bottom line is you are traversing this divide of supporting those most precious autonomous principles whilst trying to steer things with your professional skills and knowledge.  Anyone who thinks that is easy - well, let me tell you, it is not.  The result is constantly second guessing yourself, worrying that you are doing too much or not enough, and ultimately whatever you do will never feel adequate. It is a sort of trauma. 

Grief right now does not feel beautiful or wonderful, nor did it during my dad's final days.  I am grateful for friends who sit at ease in that space with me, without sugar coating it in magical or romantic words. The thing about grief that I resent the most at the moment is my inability to embrace unfettered joy in other people - I resent this for how selfish and mean-spirited it seems.  Sometimes I can play pretend, as I suspect it's a bit of a self-fulfilling prophecy - you can't feel joy if you don't at least try to share in it. Sometimes it is easier to share these selfish musings with friends who have overcome, or are overcoming, some sort of adversity themselves - I find when I confess these feelings, they confess the same. That doesn't mean I don't want to hear about the happy things happening in friends' lives. It's just that I can manage it in a trickle rather than a flood. I know that sounds terrible, but perhaps these are helpful things to understand if you, dear reader, are wondering how to approach a grieving friend. It's also important to hear about the struggles. I think people might feel they shouldn't share their difficult times in fear of overwhelming me, or feeling they are trivial, but quite the opposite - it gives me an opportunity to be a friend back, and that is also important. Friends are getting me through these times - what helps is the regular timbre of daily life, feeling included in things, being invited in a very specific way, even if the answer is sometimes no. When I visited my best friend a few days after dad died, there was something wonderfully regular about the fact she had to spend the first twenty minutes frustrated on the phone to her internet provider, leaving me to mooch around her new house and make us a brew. It makes you feel that friends are not afraid of you, that life will go on, and that you are a part of it. 

One of the errors I made, along with many of my peers, when we lost our friends in 2013, was to think I was somehow indispensible in my work.  My whole professional world, both research and clinical, is cancer and my life was full of it.  That all seems so far away right now. I had one day recently where the sum achievements of my day were emptying the dishwasher and doing some laundry.  I am exhausted all the time.  I can find joy in meeting with a friend, and indeed I endeavour to get out of the house every day to do *something*, but it's hard to stress enough how far that is from my usual daily routine. People have told me not to feel guilty about this - I don't, because I can't.  Losing my dad is one thing, but when other bereavements follow so closely, you start thinking every time you pick up the phone that it will be bad news.  By extension, it feels like good news is something that only happens to other people.  A handy thing about working in the field is that you have to explain very little to your colleagues, and people can imagine what you're facing without your having to verbalise a great deal more. I made errors in not seeking help in 2013, and I think as a result felt resentment and anger towards the system for not seeing my pain. I remember being told at the time by someone senior that 'these things happen', and being made to feel spectacularly invisible when grief caught me one day in front of clinical team members.  This time I have accepted my professional dispensibility, and have been warmly supported by my GP, seniors and supervisors.  Kids, this is a lesson for life. Work somewhere that supports you the way I have been supported.  I suspect it's a longterm win for all concerned.  It's really made me appreciate the fantastic teams in which I work.

It's taken a while but I've begun to find it helpful to read what others have written about grief.  My best friend directed me to the Reverend Richard Coles - however, it was accidentally hearing him on a BBC Radio 2 programme one evening that I actually listened to him speaking about grief for the first time. To my surprise, there was a form of relief in hearing someone else describe feelings to which I could relate.  He describes grief not being the 'work of a moment' - people want to ask if he is getting over losing his husband, and that this isn't something you 'get over' - it's more like getting used to living with the feeling. The importance of friends - and being surrounded by love, friendship and patience.  The grief of the future actually being the greatest unpleasant surprise than that of grieving the past. I can relate very much to all of these - and by extension I feel these emotions on behalf of others grieving my dad, which feels like an additional sadness. Facing grief for me must involve talking about it - and for this, Maggie's has been absolutely amazing. It is a tremendous thing to have somewhere to go where it's just about 'you' - you don't need to ask beyond the usual social niceties about the other person - and frankly have a good cry, as I have done every time I've been there. 

I'll conclude these musings by saying that I don't think this experience will make me a better doctor and oncologist - I hope I was compassionate and empathetic before all of this happened. Rather, taking time to digest everything is in hopes that I remain inquisitive, enthusiastic and passionate about working in cancer.  I am grateful to each and every person who has walked these last few weeks with me.  I am lucky to have a family who have supported each other so completely.  I await what this journey in grief next has in store for me. 


Sunday, 12 April 2020

Cancer and COVID19 - what's the risk?

I've been back in the clinical world for just over a week, and it's been really good to be back with my clinical colleagues.  It feels fully unreasonable that we are being hailed as heroes when we get to leave the house, be busy and engage with other people face-to-face (a safe distance apart).  Everyone is motivated, there is a sense of being 'extra kind' and I think many of us feel lucky that we have employment at this time of immense financial and social uncertainty for so many people.  Yes, it's a bit scary, but aren't we all a bit scared?

I think we can all agree that one reason that COVID19 is so stressful is how uncertain everything this.  This is no less true for cancer patients.  Oncologists and their patients are having to make really tough decisions together about how to proceed based on unknown risk.  Some authors have discussed the process of prioritising treatments - but the idea of stopping or delaying cancer treatment is, of course, every bit as frightening as COVID19 itself.  Cancer IS uncertainty, as everyone who lives with, or works in the area of, cancer will know.

Uncertainty begins even with committing to an anti-cancer treament.  You might have seen my earlier post about cancer clinical trials - for the most part, anti-cancer treatments are approved on the basis of phase 3 clinical trials - that is, big trials involving hundreds or thousands of patients, where the new drug/therapy/treatment is compared with the existing 'gold standard'.  That allows cancer doctors to discuss with patients the likely benefit of any new cancer treatment.  For example, say Wonderdrug works in 20% of patients - that's 20 in every 100 people who received the drug.  What was it about the 20 people that meant they responded to the drug, and the other 80 people didn't?  Maybe (ideally) it's something measurable like a certain marker in the cancer or blood that you can check in advance?  But often we just don't know.  We discuss with patients what we think the benefit might be to them, and discuss the risks of a given therapy.  The issue of side effects, while often known and manageable in general, are also impossible to say with certainty how significant they will be until you start - it's the same problem.  We might know from studies or experience that 20 out of every 100 people get really nauseated from Wonderdrug, but how do we know which 20 people that will be, for example?  So cancer patients live with uncertainty from the moment they get their diagnosis - I'm acutely aware of how this must be one of the toughest, if not THE toughest, thing(s) about cancer.

This isn't just true for oncology, I should say.  This is true for all of medicine and surgery - indeed all of life!  It's all probabilities and likelihoods, balancing risks and benefits.

So then comes COVID19.  Everyone's terrified.  Everyone's scared.  We see the huge number of people worldwide who are suffering from COVID19 infection, and in severe cases ending up in intensive care and/or dying.  Cancer is scary enough, but now this?

The evidence for COVID19 plus cancer right now is limited.  Big analyses of who was worst affected in China and Italy have suggested patients with cancer are more vulnerable with regards to COVID19, but that requires serious context - cancer means many things (advanced or curable? on or off treament? what kind of treatment? other health conditions? etc etc etc).  We need to understand more about about these previous patients so we can make decisions with, and for, future cancer patients.  Clinicians are sharing their experience of COVID19 as quickly as they can, but when you really look closely, the studies of patients who have cancer AND had COVID19 are actually very small.  For example, a study of 1524 cancer patients found 12 patients who developed COVID19, and looked at these more closely.  Another study looked at 1572 patients with COVID19, of whom only 18 had cancer, and another looked at 28 patients with cancer who also had COVID19.  It's a big thing to conclude anything at all from such a small number of cases.

For example, take the study with 12 patients.  Two patients sadly died of COVID19 - that makes a mortality rate of 16.7%.  But what if just one more patient had died, or survived - that would change your mortality rate to 25%, or 8.3% - a huge difference.  And in that particular study, the authors say that one patient actually died of non-COVID19 causes, and only five were having treatment when they got COVID19 (none of whom died). 

So whilst the studies suggest people with cancer are at an increased risk, we need to know more.  Oncologists, like the whole healthcare service, are working incredibly hard to learn, fast, about the risk from having cancer, from anti-cancer treatment, and the mere fact that having anti-cancer treatment means leaving the house and coming into contact with other people.

But the take home message here is: people living with cancer, we've got your back.  It's scary but oncologists are massive evidence nerds. The evidence is coming and we're with you all the way. Stay home, stay safe.



Disclaimer - I would be DELIGHTED if anyone wants to update me with any important references I've missed.  

Thursday, 2 April 2020

Roofs and Redeployment

At the time of writing, nearly 30,000 people have been diagnosed with COVID19, and just over 2,300 people have died in the UK.  The NHS has done the biggest reshuffle in its history and my card has been dealt - redeployment is finally here. 

I'm shortly going back to the cancer department, 8 months after I paused my clinical work to start a PhD.  The overarching emotion is relief.  There's also decent dollops of guilt (at the worry it causes my family, and at the time I've been out of the clinical game), anxiety (will I know what to do?) and a general sense of overwhelmedness. 

As discussed, Mr KP works as a doctor in the Emergency Department, so we've already started a system of minimising the risk at home as best we can.  We've established a COVID19 decontamination area in our house, and a system of cleaning our clothes and ourselves when we get home.  We've dug out old pairs of scrubs which we've previously debated throwing away - thank goodness we didn't! - so that I have something to wear when I'm on call (oncologists generally just wear office clothes... until now!).   Like a hospital, we now have COVID zones, just within our own house! 

So much of this feels like mental preparation - personally, that means avoiding the news. Apart from the fact it doesn't change my management plan (I'm still going to be socially distancing... I'm still going to go back to the hospital...), often it's hard to watch the hype.  For example, the hype around escalation and resuscitation decisions.  I think this speaks more to the fact we need to talk about this more in non-COVID times if its headline news that intensivists have to make reasoned decisions about who will benefit from intensive care.  This is no more true now than it was before, although admittedly we all worry about these decisions becoming more challenging.  Perhaps we, as a medical profession, need to learn how best to convey that in times of peace as well as times of war. 

I'm stumbling over the kind messages of support from everyone at the university.  It's quite overwhelming when people keep saying they are proud of you when you haven't even done anything yet.  I certainly don't deserve any praise; it's my clinical colleagues who have been managing the daily changes in policy, rotas and ward movements.  My only positive contribution has been towards a UK-wide coronavirus cancer monitoring project - an attempt to learn as efficiently as possible from cases of covid affecting patients with cancer.  It's been amazing to see a project like this, one that would normally take reams of paperwork and months of admin, get off the ground in a matter of days.  It's reflective of the ability of how the NHS has adapted like never before. 

My PhD swansong will be Journal Club - it has felt somewhat surreal preparing a figure-by-figure analysis of a paper about genetically engineered stem cells whilst simultaneously joining webinars to refresh my understanding about clinically managing COVID.  Maybe someone in journal club will ask me about identifying bilateral pneumonitis on a CXR, or how to interpret an ABG, or vice versa someone in the hospital might want to know about intratumoral genetic heterogeneity?  Unlikely, but a girl can hope!

Life goes on - we've just discovered that our roof will probably require major repairs in the imminent future - and I've got no idea when we'll have time to resolve it.  In reality, it's just going to have to wait until we're the other side of this.  But we're very fortunate - not least to have jobs and ones that keep us busy at that, which I realise not everyone are lucky enough to have. 

So wish us, and our roof, luck.  Fingers crossed we all keep it together in the weeks ahead.

Saturday, 21 March 2020

Love in the time of Coronavirus

I have a friend who works as a cruise ship doctor (he's one of life's top humans, by the way. He created the bar for our wedding despite running two businesses and having at least two other jobs. And he is generally chief orchestrator of FUN).  In fact, he's on a cruise ship right now.

Now I know what you're thinking - working on a cruise ship, now? Bold!  And then think that through - can you imagine three months ago thinking that working on a cruise ship could be considered an extreme activity?

It seems prudent to write at this time, if nothing else to serve as part of the record of this once-in-a-lifetime event.  I'm a cancer doctor but as chance would have it, I'm currently a laboratory-based PhD student doing brain cancer research.  I have been doing work on-call (weekends, evenings) since I started in August but basically I'm a scientist in training right now. I feel utterly helpless.  I've had all the support I could dream of in terms of going back to the clinical world, and have indeed been told that I'll probably be drafted in to work clinically.  But it's all about timing, and the time is not now.  For now, I need to try to calm myself and generate some kind of PhD-from-home strategy, and for how long no-one knows.  Meanwhile, Mr KP, who works as an Emergency Doctor, has been living the effects of the day-to-day changing of decisions, policies and patient flow.  Having just finished nights, we've therefore both been at home.  

Mr KP and I are so very lucky.  For one thing, we're a 'we'! Social distancing is a lot more tolerable when there's two of you. And although we are generally not people who talk about work in our home, it's a relief to have someone who understands as much as anyone can right now about how we're going to emotionally deal with this.  Love!  
Our survival strategy - games and gardening!
 


Physical on-your-own isolation must be tough, and I'm reaching out to friends who live alone; but what's been interesting is that this event feels (for me at least), The Opposite of Loneliness.  I've actually had to mute essentially all of my WhatsApp groups and put my phone in another part of the house for large parts of the day.  One evening there were easily 200 messages floating between my two labs and my clinical work WhatsApp groups.  Love, but for me, it's a bit too hot to handle.  

We are incredibly lucky to have such a big group of medical friends who, quite honestly, have been my source of calm in all of this, in spite of the fact they are the very ones on the coalface.  I had a big gathering of my best buds from university in late January (again - timing! Phew!) - forty of us when you include kids, plus a couple of dogs for good measure.  That's the sanest big WhatsApp group of which I'm part.  We've started doing regular video meet ups and it would be a strange irony that being so limited in our ability to physically be together will probably bring us closer together in just about every other way.  Love! Social distancing is so important, but we can find trust and comfort even in physical isolation. For me it's helped me manage my worries about what's ahead.  

Fuelling anxiety helps no-one.  That's what makes it galling when you see the over- or under-playing of the situation either by excessive Twitter anxiety or lack of social distancing respectively.  The result? Anxiety - and actions driven by anxiety - or inaction.  I've seen any number of articles by Dr Blah Blah Blah saying the government strategy is wrong, or it's not enough, or it's too much, or everything in between.  I used to read these articles.  Now I don't.  Why?  Because this is an unprecedented situation, and I am not an expert.  I see in my day-to-day life that uncertainty and ambiguity leads people to be unsure about what to do - so either they fail to change their actions, or feel anxious, or any number of unhelpful things.  We would never trust one individual person's view (our own or someone elses) in our own lines of work, so why do we do so now in an area so complex and multifaceted? Show yourself some love and switch these sources of reading OFF.  

People keep saying to Mr KP in particular that things must be very stressful given his line of work.  Honestly, I think it helps to know that he, and eventually me, are able to be useful.  I appreciate this particularly currently as I feel useLESS.  The need to feel needed is a powerful emotion, and surprisingly stressful.  That in itself makes me feel guilty - and so the cycle continues.  My utility right now is probably to Stay Well, reach out to the lone livers and find a sustainable way of living distantly.  And encourage those I can to Calm Down and #StayTheFHome.  
Rays of light as storm clouds gather

As Hugh Grant (or The Prime Minister) wisely said in That Film - 'General opinion's starting to make out that we live in a world of hatred and greed, but I don't see that. It seems to me that love is everywhere. Often, it's not particularly dignified or newsworthy, but it's always there - fathers and sons, mothers and daughters, husbands and wives, boyfriends, girlfriends, old friends.... If you look for it, I've got a sneaky feeling you'll find that love actually is all around.'

So go and give your loved ones a virtual hug, and thank modern technology that we can!

Thursday, 19 December 2019

Hi, I'm a 31-year-old doctor... and a PhD student

At a PhD induction I was chatting to a fellow new PhD student. She asked me about my background and I explained that I was actually a doctor and was taking time out to do a PhD.

'What, you're already a doctor? Why do a PhD? You already get to call yourself 'doctor'!'

I had a little giggle and then realised that to many people, I am an 'old' new PhD student, and the fact that I have a whole other professional identity (that, yes, technically comes with title of doctor) is a bit bonkers.  I mean, why put yourself through a PhD?!  Four months in to a PhD I only have 3 years to complete (most science types this side of the pond take at least 4) and it already feels daunting to get something finished in that time.  Clinicians often say it must be nice to have a break from clinical work - but all I'd say is that it's very much 'out of the frying pan, into the fire'!

It's surprising how controversial it is to be a doctor who is back to being a student. I already have a job and a career, and an all-encompassing one at that.  Looking after cancer patients with all the crazy shifts, difficult decisions, and emotional ups and downs is surely enough!  But to the wider world, the controversy is greater still.  Yup, I am more expensive than a straight-from-undergrad PhD student, and clinician scientists are inevitably more expensive than pure scientists.  Are we really worth it, with our divided loyalties and dual demands on our attention?

I'd counter that with some of the following arguments.  I'm one of the few people in my building who have worked at the oncological coal face and know how it feels to sit down with another human being and tell them there are no options left.  I know what it means for someone to have anti-cancer treatment and what people endure to get better, or get more time.  On a more practical level, being a doctor means being organised, comfortable with stress and at ease with long hours (and recognise when it's time to stop).  Hopefully it means being able to plan and manage your time, and function independently.  I'm used to swizzling clinical jobs every few months and starting again, again, with new skills/routines/colleagues, which is useful when you have endless new protocols with which to engage in the lab. Obviously these are skills all PhD students hope to hone during our studies but it's a good place to start.  And importantly, at the other end, we are able to be the connection between scientific innovation and those who might benefit from it: patients.  So we may seem costly, but I'd say it's potentially a pretty good package deal. 

The real reason, for me, is passion for change.  Having a difficult conversation with a patient about limited, or indeed no, treatment options, or treatment not working, is part of the role of an oncologist.  But obviously it sucks.  I think I'm quite good at breaking bad news.  However, it's a seriously weird thing to feel like you're good at, and obviously a gut-wrenching one. It feels deeply unsatisfying to accept the status quo, especially when even in my short clinical lifetime there has been such innovation and progress. I'm keen to be a driver of that change. 

So yes it's a bit weird doing a PhD as an 'older person' (ha! As if 31 is old) with a mortgage, a wedding ring and a second career on the go, but it's also lovely to have the perspective of where a PhD sits in the rest of your life.  I'm under no illusions that this will be stressful, but nothing is as stressful as clinical stress, with real human lives at stake.  I also think back to the anxious twenty-something who felt she had to be everywhere (work and social) all the time, whereas now I have let that guilt slide a little and just trust in myself - I work hard, which is just as well, because science is hard, but it's not everything.  I'm writing this now also to hold onto these important truths when all my experiments start to fail and I enter the Dark Zone of a PhD...!

One thing I will say - I envy the energy and vivacity of my fellow PhD students.  I'm sure that the seven years since I graduated from medical school and the many night shifts, long shifts and weekends of work that have happened since then have somewhat worn me down.  That's certainly something I will latch onto, if they'll let me :)


Tuesday, 27 August 2019

Hello, student life!

Well blog friends, a lot has happened these last few months.  In a strange backwards approach to growing up, having bought our first home a few months ago, and getting married a number of weeks back, I'm now a student again!  Aged 31 and two months, I am a full time PhD student.  Hurrah!

Teeny tiny married people 

And it really is hurrah.  I'm really excited about being back in the lab, and two weeks in, it's like learning a new sport, only it's one involving only my brain.  My PhD is looking at stem cell-ness in brain cancer.  It's quite a different area of research to what I've done before (the common theme being 'cancer'), which was very much intentional, but I'm hoping that my various previous research experiences are going to be useful platforms for the years ahead!

What of saying goodbye to clinical life for the most part (and just for now)?  Hmm... I'm probably coming at it from a slightly negative angle, which is hard to avoid when your last little spell of clinical work was Extremely Stressful.  I've been a doctor for 7 years now, and training to be a specialist in cancer for the last 18 months of that.  There's a graph of confidence (y axis) versus competence (x axis) and they say that after an early peak in confidence, it's quite natural for your confidence to stack it even while your competence continues to grow.  The problem is, where patients i.e. human life is involved, it's quite hard to ride that low confidence wave and remain objective about your competence.  Inevitably, with greater seniority comes more responsibility, and a degree of taking one for the team.  Generally I feel like I manage that pressure quite well, and even start to think I'm a good doctor. 

But I worry that I've worn down my resilience.  I think I'm a good clinician and good with my patients. I care a very great deal and I learn so much from not just my clinical colleagues and seniors but everyone around me.  But the gremlins are lurking and I'm happy to step into the sunshine and away from them for a while.

The first thing I'm learning, and in some ways relearning, at the start of my PhD is how to chop out and plug in important bits of DNA into very precise areas of a cancer cell's existing DNA.  This was something I learned to do when I was in the USA, only now we're applying it to different important areas of brain cancer cells to understand what impact it will have.  It's an exciting time, and I know a PhD is a big mountain to climb.  But damn, it feels good to have my hiking shoes on again.

Monday, 6 May 2019

The Big C and Crowdfunding versus Clinical Trials

Cancer crowdfunding is something that crops up in my professional world from time to time - where patients choose to raise funds to get experimental treatments generally abroad.  I've met a handful of patients who have chosen that path, like in this video article of a young woman's family who sought crowdfunded care in Germany.

To understand my uncertainties about cancer crowdfunding, it's possibly helpful to explain how any drug comes to being available to a patient in the first place.  Clinical trials are how we get drugs from concept-in-the-lab to standard of care treatment.  We generally divide it up into a number of chunks (image from Cancer Institute NSW, 2018)
See the source image

Pre-clinical - The lab bit.  So whenever I've rambled on about lab research on this blog (got to pick this entry from near the end of my MSc entitled 'This is NOT panicking' - a title which for me, at least, epitomises lab research!) - that's pre-clinical research.  One could pick this apart further, but essentially this is where you test things in a lab.

Phase 1 - The 'first in humans' bit.  Patients involved in phase 1 trials are, in my opinion, absolute heroes.  This is where studies will test new treatments in humans for the first time, gradually increasing the dose from patient to patient to understand more about the drug and its side effects.  The main purpose is to work out if it is worth proceeding to phase 2 and at what dose. Often they are given alongside established drugs - for example, chemotherapy plus new drug - so even in a trial setting they are getting previously approved anti-cancer therapy.

Phase 2 -  The 'Is it safe and does it work on a small scale' bit.  This is where the team says 'Ok - this is safe. Now let's give it to more people at the dose we sussed out in phase 1 and work out how to give it (how often, where, when), what the side effects are like and start to get a sense of whether it works or not'.

Phase 3 - The 'Does it work' bit.  These are big studies to find out if the new treatment works.  Usually patients are divided into those receiving the current gold standard treatment in a particular situation (or placebo if there is none) and the proposed new treatment regimen.  To be a good study, this division should be random, and 'blinded', which means not knowing which treatment you're on.  If the new treatment comes out on top, the researchers will argue the case for the new treatment becoming the new standard of care.

Phase 4 - The Afterparty - The drug is 'Out There' - and phase 4 is basically where toxicity and efficacy continue to be evaluated.

Phew.  So as you can see - it's difficult.  Very few drugs which start out looking promising make it out the other side.  It's really, really expensive.  At every stage, everyone involved has to remain as unbiased as possible to avoid pushing on with a treatment that ultimately doesn't work.  That's harder than it sounds when everyone wants a miracle.

My worry with cancer crowdfunding is that the above steps are bypassed.  During the tragic case of Charlie Gard, the people in my lab and I would discuss and debate, as I think many people were, the lengths that are worth going to in search of medical miracles.  I know some people round the table felt there should, and could, be no limit.  I'm less sure.  Perhaps I am inevitably biased by my job and the fact I cannot say I've ever seen a 'miracle cure'.  I've seen people promised what I know to be scientifically impossible or illogical, and hope being used to persuade them to proceed in spite of this.  Most people that have sought outside-the-box options spend inordinate amounts of money and 'feeling well' time, with no extra time gained.  Indeed, some studies demonstrate good early palliative care can actually buy patients the most time.  When people say that they think people should do anything to find a treatment, I find it hard to forget the many patients whose care I've been involved with in their final days of life.  I wonder what those patients would say.  I also wonder what patients and families who want to be allowed to let go feel under the pressure to seek treatment at all costs.

We should be encouraging clinical trials, because it's the only truly rigorous way of working out the best novel and innovative ways of treating people, and often allows patients who are out of standard treatment options access to the most experimental agents out there.

That's why I feel some anxieties about the cancer crowdfunding thing - proceed with caution.