Many regular readers know that I am a member of a couple of online support groups. Safe, closed groups where patients (and their loved ones) can share information, find comfort and support during hard times & also happiness or delight from those “in the know” when they get good news.
“Social Media” has provided many patients like me with a lifeline. You would think that a platform of knowledge would be viewed as a good thing by all; but it isn’t.
There are many Medical professionals concerned about these online groups – in particular with patients supposedly giving medical advice without knowledge & I frequently have to explain & justify what we do & how.
When I was first diagnosed I did when many advise against – I hit “Dr Google”…and was as bemused & confused as the next person with the complete minefield of conflicting information.
It was the patients & advocates on these support groups that helped to clear up the information. They guided me into joining the MPNE network. They encouraged me to go to the various Medical conferences I have been to.
There aren’t really very many things we don’t or won’t talk about on the groups – but the guidance we give all patients as they start their journey is to get a copy of their pathology report. The information contained within this document can decide what type of treatment the patient receives.
Interestingly there was a discussion on one of these groups the other day as to whether a patient should be able to understand their pathology report. Is it a “must”. Can a patient remain blinkered and trust that their doctor is doing everything for them that needs to be done? The general consensus??….when you are stage 1 & 2 as a melanoma patient perhaps – but once you reach Stage 4 either you or someone in your immediate circle needs to become that “expert”.
Obtain that knowledge because honestly your life really could depend on it.
I certainly didn’t understand my pathology report when I first read it….knowledge takes time & a willingness to learn. Not all patients have that….and we shouldn’t necessarily assume that they should. But what we can do is be willing to provide that knowledge if they are.
There are some brilliant treatments out there now that weren’t 4 ½ years ago when I was diagnosed, but as most Melanoma patients know only too well….they don’t work on everyone…so knowledge helps a patient (and their family) process both good & bad news…and plan accordingly.
There was a TV program on last night called “A summer to save my life” about Immunotherapy & Melanoma patients. The thing it highlighted for me more than anything else was how much hope & expectation is being placed upon immunotherapy – a relative newcomer to the treatment field. We still don’t know enough about it, even the experts are still learning as they go. Like human guinea pigs, those most at risk, gamble their lives for a chance of a future “if” the wonder treatment works on them.
What if that miracle cure doesn’t work. The patients at the Marsden are lucky – they are treated at a centre of excellence…..but all too often there are patients who for whatever reason aren’t going to main centres & they show up online confused about what options are there for them next. Or they weren’t given the time of an explanation – so don’t understand what treatment it is that the doctor has suggested they go on.
I was at hospital yesterday for my 6 monthly Oncology check up. I was sat in the waiting area & from behind me an older lady came out of her appointment & stood telling her husband & friend that her cancer had progressed & that the doctor had told her she needed to have “something called Immuo-a-therapy” & that the doctor had “been talking so fast I don’t know what the treatment means”.
First of all my heart broke a little for her because her Melanoma had spread.
I wanted her to see & have access to information – something – anything that could make what she had just been told a little less complicated & terrifying.
I don’t believe that any patient should ever leave an Oncology appointment like that. (but that’s another battle & one I will get to in time).
In said waiting area at the Oxford Churchill hospital – in a specialist Cancer unit – there are TV screens up on the walls. The sound is off so patients can talk to each other, or just sit quietly & read if they so wish. But when you are in there – you see patients looking around the room, looking for guidance, support..information.
I see those screens on the wall & I instantly think – I don’t want those screens to be playing the news with subtitles – the news is often gloomy & absolutely not what a patient should see in a Cancer waiting room.
Neither should the patient see the repeated “X consultant’s are running late”….we know things are running late – we saw the notice when we entered the building & handed over the letter at reception. I personally don’t mind a delay – it means the team are spending extra time with someone who needs it….and I really hope that when it is my turn that the team spend more than the allotted 15 minutes.
I would love to see those screens playing something useful.
Perhaps one of those brilliant cartoon style explanations of Immunotherapy (with subtitles so the sound can still be off)…so that those patients who are at a place where they want to know – or are willing to learn, can gain knowledge that is shared properly.
Granted we can’t all be experts instantly – but let’s try and raise awareness & understanding so people aren’t kept in the dark.
My check up was fine btw…..still NED…still happy & still trying to absorb as much information as I can so when the monster does come back….I’m ready!