We turned up with some drug related questions for the pharmacist. We were greeted by a specialist nurse. She was very nice and listened but just couldn’t address our questions. And she didn’t offer to ask anyone. So they remain unanswered.
She ed Husband to discuss his medication with a GP but the GP says that they can’t discuss medication prescribed by the hospital. So the patient falls between the cracks because different branches of the NHS just won’t / can’t talk to each other. We hear a lot about ‘protocol’ these days. All she could say was that our GP should contact the hospital to check that any medication they want to prescribe is safe.
Nurse thought Husband’s BP was good. Even I know that BP in the 150s is not where the GP would like it. GP said that if it stayed in the 140s Husband should be on medication to control it. As we understand it Ibrutinib can cause high BP. But we don’t have access to a doctor to ask. That’s becoming a bit of a theme…
Nurse told us that Husband’s bloods were good and stable but when we asked for the numbers we found that his paraproteins are up a bit and the haemoglobin down rather more significantly – from 136 to 124. Nurse told us brightly that it was fine, we pointed to the graph and said we’re aware that trends matter rather than individual numbers but the trend is sadly clear.
She seemed to focus on the paraproteins. We told her that we’ve been told by the specialists that while the paraproteins are a key way of measuring the cancer’s activity they only really matter if they’re impacting the red cells negatively. And they are. She didn’t seem to know what to say.
I suggested blood tests in a month rather than 6 weeks to see if the jump is significant or not and she agreed. She’s going to call us with the results and “then we can make a plan”. Except that Husband is the patient. We’d rather a doctor make the plan. In fairness the nurse will almost certainly report to the consultant – ‘the’ consultant – we only have 1 now rather than 3. For the entire department. Poor guy.
My concern is that if the next test shows another significant drop then it’s rather late to be finding someone to discuss a treatment plan. It can take weeks for things to be discussed at an MDT. Maybe they’ll just do what they discussed a year ago – Zanubrutinib. Or Acalabrutinib. A nib.
I think we’ll have to nudge hard in a month to get a doctor’s input.
The meeting was a disappointment on all levels and a bit of a blow. It feels like we’re largely being left to our own devices. Husband’s cancer is rare and the treatments aren’t providing the long lasting remissions they’d hoped for so the system sometimes seems to be throwing its hands up with a “What do you expect us to do?”
One big plus: Husband was told to start taking Acyclovir, an anti-viral. Protocol. Sadly it seemed to give him diarrhea and he spent some weeks not daring to go too far from a loo. The nurse said that since it’s prophylactic rather than treating something he can come off it for a while and see if symptoms improve. They have. Significantly. So that’s a real plus. What isn’t so great was that she didn’t seem to know that the shingles vaccine isn’t necessarily as effective in immunocompromised people as it is in the wider population.
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