You could argue that right now is a great time to be British. We have a Royal wedding a few days away the Olympics and Paralympics in 2012, we have some half decent golfers we have hotter weather than the Balearics (for a day or so) and even have a Tennis player that might win a Grand Slam in the next 5 years.
I mean, sure, its admirable that we can organise a queue, that we can make Seafood and Potatoes world-famous by deep-frying them (in batter). That we celebrate ye olde acts of terrorism that anything coloured red is quintessentially British; even that we use words like quintessential in our quaint, stammering, over polite way. But there are times when our “Stiff upper lip” does not serve us well. When it comes to our own or our families health then there are times when we should be throwing our cordial, diplomatic sense of civility out of the window, grabbing our consultants by the shoulders and saying “Listen to me, answer my questions or send me to someone who can!”
Should we do something about out "Britishness"?
You see, I have seen things over the past few weeks that make me sad that our British culture is so polite that we will not question what we are being told. Don’t get me wrong, after I had my radiotherapy I couldn’t thank the radiologists enough for exposing me to accelerated particles. I bought my chemo nurses gifts for poisoning me week in, week out. I was ever so grateful to my consultant when he was rushing along various tests and making sure I was seen, quickly, by the right people. This is all as it should be, these people did more than their jobs worth, they put me and my needs first and all of them went out of their way to make me feel reassured or well supported; I still have very fond memories of my chemo nurses who made the experience much more bearable. But lately I find myself thanking my consultant for making me wait 2 hours to get a blood test and 10 minutes of his time. I mean hang on a minute, he’s busy but it is his job I should be nice to him but why can’t I still be angry by the wait? - of course I am angry and I moan about it to Eve but when I actually speak to anyone I just say “oh it was no problem!” because this is the British way.
But it wasn’t this that prompted my unpatriotic blog title, this was nothing compared to the stories of some of the fellow Hodgkin’s patients I have spoken to.
A common problem on the forum is the use (or lack of) more advanced scanning techniques. Now, I have gone to lengths to explain to you all about PET scans and how they are better than CT scans (when it comes to helping stage Hodgkin’s once diagnosed and for assessing response to treatment – there is still some debate re: the use of PET for routine followup), mainly because they can tell the difference between scar tissue and active disease. Sometimes, though, you will see forum members whose doctors are making decisions from CT scans alone and deciding that treatment has failed based on the size of a residual mass alone. Bad move and one that could cost the patient unnecessary toxicity. Other problems can be that we see patients left stumped by follow-up protocols or left confused on how to deal with post chemo symptoms, with doctors that can only guess at the best course of action. It gets worse though, one person who I have spoken to has been told by her doctor that she has no hope of cure, that there is no point in searching for it and that palliative care is the best that can be offered in an attempt to buy some time. Just imagine how heartbreaking it must be to hear that news – let alone tell it to her family. She then posted her treatment \ scan history and in actual fact, knowing what I know from visiting the forums and reading the scientific studies this is far from true. She has an unusual presentation that has not been confirmed by biopsy (suspected relapse should always be confirmed by biopsy where possible), she has had salvage chemo but not been properly assessed for response (no PET – and the CT was compared against an old scan, not the one immediately before treatment). She has never had radiotherapy (even though this used to be used, exclusively, to treat the disease – with great results). She has not tried alternative salvage (2nd line) chemo nor had either an auto or allo transplant. She has not been offered trial drugs that are increasingly available in the UK. She has not been properly advised and as a result taken home some terrible news that may not even be true. This is shocking.
I appreciate that this is getting a little technical for most of you guys who don’t speak the language of Hodgkin’s, but the point is that some of these things are very basic to the treatment of Hodgkin’s and you have to trust me when I say that some very basic things have been missed. Fortunately the lady in question is going to get a second opinion and I know that she will go into that meeting knowing what questions to ask. She assures me that she will ask those questions and will challenge her options as she has every right to do. What if she had been too British and accepted the opinion of the doctor that she was assigned (she had no choice). What if she gave up now, when in actual fact the game is far from over? I know that there are people in the UK, in fact people all over the world, who will have just blindly accepted what their doctors were telling them, people who may not want to ask the questions as it may be too rude, people who think that a free service cannot be questioned and as a result people who do not get the right treatment or are heading down the wrong path and this is a tragedy.
I am happy with my consultant. He has his “ways” but he gets the job done, but most of all he appears to be doing everything the right way. I know this and I feel so strongly about the cases above because I spend a lot of time on the Lymphoma forums at Lymphoma.com . On this forum we (myself and the community) have seen hundreds of people come and go. Hundreds of stories, hundreds of test results, chemo regimes, new and interesting scientific papers on the very latest and cutting edge treatments for Hodgkin’s Lymphoma. We have seen the many different ways that this disease can present itself can relapse and can show itself with regards symptoms and scan results. We have seen what happens when someone is cured, even against the odds and when it takes someones life (even when least expected). We have seen it all. I am pretty sure I have seen many more cases than my consultant and as a result of all this I am pretty sure of what the options are for all the various stages of the disease. My hospital sees 3 or 4 cases of Hodgkin’s a year. 80% of those will be cured first time leaving less than 1 patient a year returning for relapse treatment. Failure to respond properly to that treatment is even rarer and my hospital has 4 haemotologists. My doctor has probably seen very few cases of refractory Hodgkin’s in his life. Because of this, if my doctor’s opinion started to diverge from the grouped opinion of all the experts and long time members of the forum, of the collective experience of hundreds of patients (and too many relapse cases) then I would drop him in a heartbeat and head straight to a larger institution where I could find a Lymphoma expert. I would be on the internet searching for available trials, I would be on the forum asking for a consensus of opinion based in shared experiences. I would fight for myself, I would not accept my position and I would be… un-British about the whole thing!
What I admire most about the guys on the forum is that, primarily because they are self educators and to some extent because they pay (more directly at least) for a medical service and have a larger choice of providers, they will always seek 2nd opinions if there are question marks about their treatment. They will seek out experts in the field and they will not settle for what they’ve been told unless it makes sense. I have seen people who have rejected the advice of one doctor and had different, succesful treatment from another. They won’t take any $h*t!
Now I am not advising chaos and mutiny. I am not talking about rejecting every first opinion if you don’t like it but I am advising everyone to have a plan, to self educate and to be aware of what is normal and what isn’t and if your personal experience differs from those expectations then ask questions and demand answers. If your doctor cannot (or won’t) give you those answers then go to someone (or somewhere) who will. Be an advocate for yourself. You are the most important person in all of this. You have to start thinking about yourself.
I can’t publish my personal treatment plan (that I keep in the back of my mind - just in case) because I don’t want to have a version of my plan being used as a reference guide by anyone who finds it in case it leads them down the wrong path. I would, however, suggest that everyone reads the current American NCCN guidelines for Hodgkin’s lymphoma as it makes some very good points (such as always confirming relapse via biopsy and the importance of the use of PET scans). You can get it here (may need to register first).
If you are reading this post then you are already on the right path to self-education but don’t stop now… Pleasejoin the forum and ask the crowd. You will soon understand your options and the opinion of the others. You will get yourself a list of questions to ask and you will be empowered to pursue the best treatment for yourself. When you do join, head straight to the following posts which address some of the issues I have covered almost immediately: