Thankfully this week I started to feel better and had a lot more energy. I was able to do some work from home and it felt good to actually engage my brain and do something constructive. Things were a little fraught at the hospital on Wednesday however.
We followed the usual mid-cycle routine for a Wednesday. The nurses took more blood samples and changed the dressing on my PICC line and took the usual blood pressure and blood oxygen levels before I waited to see the doctor. Well, the Professor actually who I've begun asking to see specifically as I'll be fortunate in that I'll be able to arrange appointments privately in the future (all appointments and care to this point has needed to be done through the NHS as no private care providers will administer this type of chemotherapy), which will hopefully reduce the amount of time I need to wait.
I was keen to discuss my elevated AFP blood tumour marker from the previous week where the reading was 16 which unfortunately indicated that there may still be some cancerous cells present. I believe the typical normal range is up to around 6 or 7. This meant that over previous weeks my readings had fluctuated been 4, 19, 5 and 16. The professor agreed that this didn't make any logical sense and couldn't provide a definitive explanation for this other than he hoped that the levels would again come down which would be checked from the blood sample I'd just had taken. However, he informed me that if the levels remained high or had increased further, this would not be good news and would likely lead to more tests, CT scans and a review of my current treatment plan would need to be undertaken. This obviously worried and confused me somewhat. Why, when I was on a course of chemotherapy, would my readings spike twice to levels that would cause concern? I understand that during chemotherapy tumour marker readings can temporarily increase - but supposedly not as high as the readings I'd been registering. Could my body be reacting in a way that is possibly an exception to the norm?
I also informed that Professor that I was suffering from bad Tinnitus and hearing since the start of my second cycle. I already had some mild ringing in my ears before I started chemotherapy, but this known potential side effect of the Etoposide drug was really starting to affect me to the point that my hearing was extremely sensitive and any high-pitch sounds really cut through me.
The professor said, understandably, that the Etoposide drug was crucial in my treatment plan and I must receive the next cycle. However, to try and minimise any further risks I could opt to have the initial three day part of the cycle over five days instead. What a dilemma. I was just about mentally prepared for the three days of treatment next week, but to be told this would be extended to five days was really some unwanted news. And there are no short cuts by having the drugs over the five days as only the level of the dosage of the chemo drugs is decreased, yet the amount of fluids/saline I will actually consume over the five days will be increased.
At this point I was edging towards sticking to the three day option, but understandably Jacki and the prof countered that by saying for the sake of an extra two days it would be foolish to jeopardise any potential long-term effects on my hearing. Of course they were right. Therefore, based on how I felt during the first three days of my previous cycle I'd already requested to stay in the hospital overnight, which meant that a two night stay was now being extended to five nights as I will actually receive the drugs Monday through to Saturday morning. Not a week I'm looking forward to!
I finished the appointment with the Professor feeling concerned and anxious as I knew I would be able to obtain my latest blood readings whilst I was at the hospital having my Bleomycin top-up. We waited the usual two hours whilst the pharmacy made up the prescribed chemo for me (I can understand this wait as there's no point wasting expensive drugs if I wasn't signed-off as well enough to receive them). Whilst receiving my chemo I asked a nurse (Elfie) if she could access my most recent blood results. I could see she started to print them off and my heart started racing. Please let them have returned to normal levels, I just couldn't cope with having to face the 'what next' unknowns if they remained high or had increased.
I quickly looked at the print out which contained dozens of readings, but no sign of the crucial AFP marker reading. I asked Elfie why it wasn't on there. "Oh, it appears that whoever's requested your blood sample hasn't asked for the AFP levels to be checked." I could not believe it!! How was it that this crucial reading given my previous week's results hadn't specifically been asked for? It's things like this that do leave me feeling nervous regarding some processes and procedures that are in place in hospitals. Who was responsible for requesting my bloods and why had they not asked for the AFP marker? Furthermore, why did the Professor not explicitly check that AFP was not requested for my blood checks?
Anyway, thankfully Elfie was able to take yet a further blood sample from me and this time ensured that the AFP level was analysed. If it wasn't for this, the team of doctors and consultants would have met in two days time on my Friday to review my results and assess the best course of action, only to find that the key result they needed to review wasn't present. This could potentially have held up and progress on further treatment by a further week which would have left me in that awful position again of not knowing whether I still had cancer and how my treatment would be affected.
Having finished my top-up of Bleomycin (which meant the end of my second cycle - originally the plan mean that this would have been the end of my chemo), we headed home and I felt ok aside from some usual mild flu symptoms which I tend to feel after receiving Blemoycin.
A few hours later Elfie kindly phoned as my most recent blood results had come back. I literally held my breath before she informed me of the good news that the AFP level had dropped down to 7 which was a huge relief. I thanked her so much for taking the time to phone before informing Jacki of the good news. Hopefully this will be the start of further such results over the next few weeks.
The rest of the week I spent doing some work coupled with spending as much time with Jacki and Lyla as I could whilst I felt well, knowing that next week was likely to be a lot less enjoyable. I also took the plunge and completely shaved my head on the Friday. By this point my hair was really starting to fall out, but I guess I'd done well to hold on to it for six weeks since my chemotherapy started. I was prepared to lose it after two to three weeks. So, for the next few weeks at least I'll be looking like a member of Right Said Fred but it's funny how quickly you get used to changes like this. And Lyla for some reason seems to love stroking and tapping daddy's new shiny head, so at least someone's getting some enjoyment out of it.
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