Hi @angelblue I'm from the June 2018 starters and thought I'd pop in. Sorry for such a long post -- I'd meant it to be brief! 😬 (Not sure if that's the right emoji. *embarrassment* ×2)
I suspect the hotline team and on-call oncololgist may have been reticent to test your blood early in the cycle as (I believe) the protocol is to give a blood transfusion if your red blood cells or platelets have not recovered to a certain level by week 3. They much prefer to give your body time to replenish these factors on their own, both because it's better for your health and because blood suitable for transfusion is a precious resource. They want you to be safe but also to avoid unnecessary overtreatment. However, I am not a doctor, so I can't be quoted as an authority on this.
At the same time, they're doing a terrible job of communicating with you! That is a shame -- and not like the experience I had or that Shi or others have reported. Maybe it's the stress of the season getting to everyone? Hospitals do tend to be understaffed at this time of the year. That's no excuse for how they handled your very real and legitimate concerns, however.
I'd suggest having a frank and open conversation with your oncologist at your next appointment -- ask why your bleeding doesn't worry her/him (though maybe it does, even if it didn't worry the on-call onco), explain what worries you about it (anemia, fatigue, palpitations, delayed treatment, etc.), note the large clots you're having, and ask if there is anything you can or should do to mitigate problems. And if you want to, also mention that you felt brushed off when you raised your concerns with the hotline staff on Day X of your Y cycle -- it might then allow her/him to give you some context. Or it might push them to do some extra training with the hotline team...
Finally, I know the thought of having a cycle of chemotherapy delayed is upsetting, but it may happen at some point. 'The best laid schemes o' mice an' men...' and all that. After my 3rd cycle of FEC, I'd asked to move my usual Friday infusion out to the Monday, as my sister was visiting from the US and I hadn't seen her in 2 years; every day was precious. On Monday I showed up and learned my liver enzymes were elevated -- 7 times normal. No chemo for me until they fell. I'd had some cheeky half pints of beer while my sister was in town, but not much more than I usually allowed myself in week 3. But I'd also been on an antibiotic before that for an inflammation in my cannula vein, and probably got dehydrated during some hikes in the Wye valley, and the chemo itself hits the liver. Blood test after blood test that week, my enzymes were still too high. And the only remedy was to wait for my liver to repair itself. I was gutted. I had my whole diary mapped out for my remaining cycles, my likely surgery window, my work deadlines, and now everything was in limbo -- or worse, chaos. I didn't get good blood results for 2 weeks. I was ecstatic when I finally got to get another cannula. Oddest joy ever. And then it was back to the usual dance with the side effects.
Another on my thread had to be delayed a few times due to a strong response on her hands and feet to the taxanes. There are lots of stories like this around the forums.
It happens sometimes. And it will feel like a punch to the gut if it does. And then you recalibrate to the new normal and keep fighting. 💪
Good luck for your next cycle -- may your bloods be good, and if not, may they recover swiftly. 💞
