Trust No One

This second chemo cycle has taught me a major lesson. Look into everything the oncologists prescribe. Yes they tell you to tell them what medications you are taking but  they don’t actually do anything with that information. They type it in to their little forms and then ignore it. Probably (hopefully) in most cases that’s ok. But sometimes it’s not. And in my case it wasn’t when the oncologist advised I come off Ondansetron for my nausea and go onto Metaclopramide instead. This resulted in two nights of severe, awful,   horrendous leg spasms that had me doubled up, weeping, in total despair.  I have severe Restless Legs Syndrome. I take tablets every day for it which just about keep it under control. But it’s a knife edge. It doesn’t take much to upset my body chemistry and kick (literally) everything off. After googling I discovered that most anti nausea medication can greatly aggravate the condition. The only tablets I can take are Ondansetron. So I put myself back on it. I am annoyed at myself that I didn’t check the new medication before hand and I didn’t twig earlier. But equally what is the point of me telling my oncologist I have severe RLS if these things aren’t taken into account when prescribing stuff?

Also found out the acid reducing Omeprazole that he prescribed  can aggravate RLS. It didn’t initially but after a week it was clear it was also causing problems (another night of no sleep, terrible spasms, me crying in my husband’s arms and genuinely not knowing how to carry on). I’ve read that reducing stomach acid can affect absorption of certain minerals from food  – if  iron or magnesium then that  could be why my  RLS was then worse. Or possibly reducing acid affected the absorption of the medication I take. Either way I’ve stopped the tablets and my legs are so much better

I’m not expecting oncologists to know everything. I have to be my own advocate. I have to protect myself. But they make such a fuss of finding out about your health and medications beforehand and then seem to do sod all with this info. And it scares me that I could be laid up in hospital, unable to speak (god forbid) and they could be pumping me with stuff that drives my RLS wild, sends electrical surges down my body every 6 seconds or so and causes me huge huge amounts of pain. And all because no one has double checked contraindications with RLS or remembered to give me my Pramipexole.

And continuing with the theme of  “issues with the stuff the the oncologist prescribed”,  he told me to continue with the bone marrow injections this cycle – 8 days’ worth. But my chemo was reduced by 20% so should my injections have been reduced? Seems so as on day 7 of the injections I felt awful – shivery, high temp and a nerve like pain in my pelvis whenever I stood up that was so severe I almost collapsed several times. So on the morning of day 8 I had my bloods checked (I had to fight for this, even though high temp and /or flu feeling is meant to mean immediate blood check for chemo patients in case they are neutropenic – the triage nurse husband spoke to wanted me to go to GP instead…) and it turned out my absolute neutrophil count was 87 when it should be between 1.5 and 8. Dr said I had to immediately stop the injections but I’d already taken 7 out of the 8 so a bit late (but again better late than never). Feel a lot better today. But all this is yet more stuff to talk to oncologist about in next meeting except it turns out my oncologist has now moved on and my next appointment is with a specialist nurse instead. Will be interesting to see how this goes. Quite frankly I’m angry about so much of how this is all being handled but in particular the total lack of interest in contraindications between what they are pumping into my body and what’s already in my body. Was so near to giving up again this week but this morning feel ready to fight on, to check everything they give me, to challenge what is advised/prescribed if I think they are overlooking something important. Someone said on another forum “Trust your oncologist, they know what they are doing.” Unfortunately my experience is that while on the whole this might be the case,  when it comes to the needs of specific individuals with specific conditions over and above tumours and cancers this might not be the case. They are not gods. They don’t know everything. So it’s my job to work with them and give them the information they need. I just hope the specialist nurse and new oncologist understand and are receptive to this. I hope for their sakes I mean, as I will escalate if they are not. I will not be ignored. It’s my body and I will have my say.

 

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