Comment by gendal
4 days ago
The lesson I took from my brother's Hodgkin Lymphoma treatment was that the quality of your local A&E/Emergency Room matters a lot. It's easy to get focused on the cancer treatment (and that is of course extremely important). But in the UK, at least, if you become seriously ill at home during your treatment you will end up in the Accident and Emergency department, not the cancer ward.
Treatment for cancers such as lymphoma unavoidably result in the immune system being basically destroyed... so patients are, at times, unbelievably vulnerable. My brother ended up in A&E several times. Sometimes it was a false alarm - just nasty but normal side-effects from the treatment. But, several times, he had caught an infection that required IV antibiotics to resolve. He ended up on PipTaz several times and Vancomycin at least once.
You would think an immunocompromised cancer patient would go to the front of the line. But this was absolutely not his experience. Even though his wife repeatedly told anybody who would listen about his situation, he was nevertheless subject to huge delays in diagnosis on multiple occasions.
And - this is the point of my post - delay in treatment for an infection on one occasion resulted in sepsis that was only diagnosed when his wife eventually persuaded a doctor from the cancer ward to come down and look at him herself.
Absent his wife's borderline aggressive/hysterical advocacy for him he would be dead.
My takeaway was that the 'best' situation, therefore, is one where your cancer hospital is a genuine specialist centre AND your local emergency department is highly rated and sees a lot of cancer patients and so knows what to look for. If the latter is not the case, you will need an extremely effective and tenacious advocate to fight on your behalf.
We were blindsided, her cancer was completely removed, but even though they suspected a metastatic cancer, histopathology determined grade 4 glial tumor, idh-1 negative, p16, GFAP positive, Ki-67 20-30%. She then developed oral thrush and had a cough, she was also feeling tired and sleepy, and had swollen ankles. Looking back, these were fairly obvious signs. But the surgeons never warned us about any of it, we attributed the swelling to dexametasone, coughing to her smoking habits, her frequent allergies and sinus problems. She was waiting for the molecular analysis of her tumor before starting treatment. Her state would at times improve completely, and her primary care physician dismissed her after seeing her throat, and the blood work was only done a few days later. By then her CRP was already through the roof. Only then was she admitted to the pulmonology department, and she never recovered, went into septic shock and died a week later. I would say that the first symptoms started maybe a few days before going to the doctor, and I suspect had we gone to the main ER in the next biggest city (where she did the operation), she would've gotten a throat swab and blood drawn at least. It's so sad, because it took only a week or two from diagnosis to her tumor being removed completely by skilled surgeons and she never got a chance to fight it. Croatian healthcare is also such that it's better to drive to the big city emergency hospital directly than to rely on your doctor or small local emergency, usually they are understaffed and just plain uninterested.
I'm so sorry for you and your family's loss. This sounds utterly devastating. (And apologies if my message above sounded like a criticism... that wasn't the intent at all)
I'm very critical of myself and my family, she was the head of the house so to speak, and she was the one making decisions. She didn't want to see the doctor so in those few weeks we gave in, I think she was afraid of everything that followed, the prognosis wasn't good. Nothing in the slightest prepared us for this outcome, it was a total blind spot. It was very much in the wrong moment, many different life changing things all at once.