When we were on holiday I wondered whether I would have anything to say to keep my blog going. Yep, looks like it won’t be a problem.
Today’s new word is thrombocytopenia. We had timed our holiday* so that I could go for a blood test before seeing the oncologist on Monday (looking at the all important PSA levels). I had been going to go first thing Friday morning but a meeting had come up at our daughter’s Day Centre (rumours of it closing) so I had popped over to phlebotomy on Thursday afternoon. (For some reason hospital signage never has phlebotomy, just Blood Tests. Talking of labels, every time I pass a door with a sign on it saying ‘Disabled Toilet’ I wonder how and why it has been disabled and why they can’t repair it so it can be used. I guess ‘Toilet for the use of disabled people only (unless you are really really desperate)’ would need the sign to be bigger and more expensive.)
Friday afternoon I got a phone call with ‘No caller ID’ which I was tempted to ignore, but answered anyway. Just as well. It was my GP to say that my blood tests had come back normal except for my platelet count which had plummeted to 11, a fraction of its normal level. Not a good thing! Platelets (or Thrombocytes to give them their posh name) stop bleeding by clumping and clotting blood vessel injuries so low platelet levels can result in bleeding, or bruising more easily. My GP said she was going to contact haematology but I may need to go in to A&E. Half an hour later she rang back – “Pack your bags, pick up a referral letter from me and go to A&E, You are expected.” Liz rapidly made arrangements for the granddaughters to be collected from school and off I trotted.
Bit of a queue at A&E reception with the receptionists glued to the computer screen when not grabbing something from a printer. “It would be quicker if they dealt with us rather than printing off their lottery numbers” grumbled the woman behind me. Which all goes to show that if you don’t understand what is going on you get completely the wrong end of the stick and irritated. I would prefer to get logged in correctly with all necessary information available to the medical staff rather than to be rushed through misidentified. Perhaps a simple explanation of the process (and how long it takes) would help patients understand what is happening (assuming they can read).
Once I had booked in I was quickly ushered through into a side room where I was given an MOT – blood pressure, pulse oximetry, ECG and bloods taken. Now a wait. And a bit more of a wait. It was getting past my feeding time. A bit more of a wait and a sandwich and a few other bits were rustled up (well done nursing team). As a coffee appeared so did a doctor. More questions and examinations looking for rashes and bleeding – nothing found. The blood test showed platelet levels virtually unchanged. I asked if he knew what it was and he said he could give me a long medical term (which might have been idiopathicthrombocytopenicpurpura or even supercalifragilisticexpialidocious, but I am not sure because I didn’t write it down) which he explained means “we don’t know”. After a phone call to the haematologist he gave me some steroids and said come back to Ward 5 tomorrow.
Ah Ward 5 – where I had been sent after my last visit to A&E (see Beetroot is not my colour). So next morning I turn up and have more bloods taken and have another wait while they are cooked (or whatever they do to them in the lab.) then I see the consultant. Platelet levels have doubled (still way off target though) so either the steroids are having an effect or they are getting better on their own. So the next step is a course of steroids and further bloods and a consultation on Monday afternoon. If the platelet count continues to rise we can then stop the steroids and see what happens next. It is all a matter of elimination. At the moment the diagnosis is “query ITP”.
So we wait and see. The other results from my blood tests are that my PSA has dropped further (great) but my blood sugar levels are still too high (and will be made worse by the steroids). I see more medical appointments approaching!
Talking of medical appointments San Diego Dan has posted a link to an article (Say what? Medical jargon leaves cancer patients feeling lost in translation) about confusing medical jargon and topsy-turvy language (where a positive result is bad etc.) which also has some good communication tips for any meetings with medical professionals:
- Stop the conversation and ask questions if you’re confused.
- Recap with your doctor before you leave.
- Bring a caregiver with you to the appointment.
- Prep for the visit beforehand.
- Take a breather.
*If any of you want to read my take on Northumberland just pop over to my TravelBlog