Back again

Well it has been a while since I have had anything to report as I am now into more of a routine of visits every 4 weeks which is great after the rush of the summer when it felt like I was at the hospital every week.

Overall I have been pretty well which is great.

As usual I started the day with a blood test. In what seems to be the norm the plebotomist try to take blood from my hand but to no avail so she tried again in my inner elbow with more luck this time.

With blood done it was then upstairs to see the research nurses who took the normal observations.

My blood pressure was a bit higher than normal, not sure why?

So we waited a few minutes snd then took another with better results.

I still find it amazing how your blood pressure can change over the course of a few minutes. I think it may have been the excitement of the blood test that raised the pressure!

Having had my observations done it was not a long wait to see the oncologist, we saw Dr Mark Linch today who gave a quick update on where we were and he also gave me a quick check over. Overall we were not with him for long as the trial is just starting to tick over now.

After seeing Mark we headed to Patisserie Valerie for a late breakfast and to meet a friend.

We then had a walk down Tottenham Court Road where Barbara picked up a few bits and pieces.

We got back to the Macmillan Cancer Centre at about 1pm with our lunch. Barbara was keen to get on with a jigsaw and I had a meeting with someone who was going to be a new Patient Research Ambassador (PRA).

Graeme the PRA turned up at about 2pm and we had a chat about what is covered by the PRA’s and the sort of things I did. I hope he found it helpful.

Time then dragged, my appointment time for treatment was 2pm but that came and went……………………

Come about 4pm I had a canula fitted by Samson who is very good but it was still another wait until 5pm before the Nivolumab turned up and I was finally under way.

The treatment went well and was rather unremarkable.

We spoke to lots of patients who all had interesting stories to tell and we also learnt how to make a Christmas Tree out of a book.

It was 7pm before we left the Cancer Centre, it felt like a very long day and I was shattered. Fortunately the trains were kind to us and we were soon home.

The Same But Different

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.

P Talk

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!!!

Patient Research Ambassador North Thames Meeting

Back in London today but for something different as it was the quarterly CRN North Thames PRA Meeting.

That’s Clinical Research Network North Thames Patient Research Ambassador Meeting.

Better to use the abbreviations 😉.

I will explain more about the CRN and being a PRA in a later post.

Today we started the meeting with a session of Mindfulness which was interesting and only took a few minutes.

I will be trying this at home and the good news is you can do it in bed😁.

We then got updates on the CRN from Christine and Iain.

And then a very interesting talk from Professor David Werry on Stroke Research and how he uses patients in the different stages of research from setting up the trial and all the way through.

I learnt a lot from this about Strokes but it made me wonder how much patient engagement there is in other trials.

We spent sometime talking about what we had been up to as PRA’s which was good and interesting to hear the range of things that are going on.

We finished off the day with a quick comms update and I made a quick video with Lauren about my research experience and my PRA experience.

Then time to head back home before coming back to London on Monday for my Urology Ultrasound!