Off to London again today for my outpatients appointment followed by treatment so very the normal routine.
The difference is I am also doing a talk today on how to improve the patient experience while on trials. This is part of a training day for NHS staff called Becoming Research Active, I am giving the patients view point.
The day started with a cracking sunrise, with te sun creating stunning patterns on the clouds.
Arrived on time for blood tests and was first in the queue. Helen the plebotomist tried to take blood from the inside of my left elbow but couldn’t find the vein and it trying to find it I was squiming in pain.
So she then went for a vein in my right hand which went much smoother. I hope my vein don’t withdraw anymore as I don’t really want them taking blood from my feet or neck!
Once blood was done it was off to see Emily the research nurse who did my observations.
Weight 104kg which was the same as last time.
Blood Pressure was 118/80 with pulse of 80.
Then it was time to wait for my outpatients appointment……..
Time passed and then we were called forward by someone we had not seen before. Dr Cliona Flanagan introduced herself and we started the appointment.
It was good news and bad news!
The results from my bone scan and CT scan were in and it showed that I had a small module of cancer on a lymph node in my Pelvic region and it also looked like I had a spot on my lung. These were both classified as new which is a bit worrying.
In fact it’s very worrying and makes me wonder if the immunotherapy is working or not. The doctor said it was too early to tell.
My blood test was showing everything as normal apart from the AST which is the liver function; this had gone up slightly from 39 to 41. 40 is the top of the normal range so just slightly over. I hope this is not going to continue to climb and be an indication of liver toxicity caused by the immunotherapy!
On the plus side my PSA had dropped to 18.20 from 23.50 previously which is good news and I hope this is the start of a downward trend.
The CT scan also showed a trace amount of pericardial fluid around my heart which which is nothing to worry about.
The good thing about this visit was that the doctor spent time to show me the CT scan and the Bone Scan which was very interesting. I will talk more about these in another post.
The doctor gave me a check over and declared that I was fit for treatment in the afternoon which was more good news.
So after the appointment we headed to Oxford Street and had breakfast at Cafe’ Valerie which was very nice followed by some retail therapy although we didn’t buy anything.
By 1pm we had arrived at Park Crescent where I was going to do a small talk as part of ‘Becoming Research Active’ course that was being run, I was to give the patients perspective of being on a trial.
Overall I think it went well and I enjoyed giving the talk.
Before long we were back at the cancer centre for my treatment which went well and without any hiccups and come about 5pm we were on our way home.
I was feeling good after the treatment which was good as last time I felt really rough. I am hoping treatments will get easier now and we will get into a routine.
My next appointment is not for four weeks now, feels like a holiday!!!
Kelly the student doctor spent time with us today and we spent lots of time talking. It was very interesting hearing about her training and some of the challenges she faces.
What will I write about over the next four weeks!!!