Progress Update for April 2019

April 2019 will be my last monthly progress update for a while. My next scans aren’t until August and, realistically, not much is going to happen between now and then. As such, I won’t make another progress update until such time as I have actual progress to report on.

Fortunately, while far from being a busy month, at least April 2019 has given me a couple of things to talk about.

The first thing was a medical concern that dragged on for a couple of months but ended up all being in my head. The other thing was an admin issue but is reasonably important if you’re based in the UK.

But, let’s start with the medical element. Back on the 7th January, I had an eye test at Vision Express. It was nothing exciting, purely routine; just an annual check up. As part of the check up, images were taken of my retinas. And that’s when the problems started.

During my previous check up, it had been noted that there were unusual patches on my left retina. At the time, the Ophthalmologist hadn’t been sure what the patches were but thought they were fine. During this visit, however, it quickly became clear that these patches were larger than last time. When I explained about my ongoing experiences with cancer, the Ophthalmologist said that, while she was sure it was nothing, she’d refer me to the hospital.

Yeah, we’ve all heard that one before…!

So, the waiting began. Thankfully, it wasn’t that long before I got a letter. Said letter came in the form of an ‘e-Referral Appointment Request’. I was given a booking reference and a password and invited to log on and book myself an appointment with the Ophthalmology Department of the hospital. The notes at the back informed me that the average wait for a first appointment was 118 days. Which was around four months… maybe I’d get lucky and there’d be a cancellation.

I logged on and, nope; the first suitable appointment that I could find was Wednesday 5th June. I sighed, booked it and went back to my packing for our upcoming ski trip. June was a long way away, but I figured that I should be able to put it out of my mind for a couple of months. If I couldn’t, I’d approach my private medical care provider and see what they could do about it. I’d decide after the skiing holiday.

Then, on around the 11th February, I got a letter cancelling my June appointment, ‘due to unforeseen circumstances.’ This seemed very strange. Then I noticed the other letter from the hospital. This one was inviting me to an appointment on March 14th. It seemed that my case had been fast-tracked. Yay!? It was good that they had but worrying that they thought they needed to. And, as the appointment was only five weeks away, that was plenty close enough to start worrying about. I tried not to let it, but it dampened my spirits during the skiing holiday.

The appointment turned out to be for a, ‘virtual review clinic.’ This meant that I didn’t see an actual ophthalmologist. Instead, I was seen by a series of technicians. The first technician put some drops in my eye to dilate my pupil. After that, I was called to a couple of different rooms where I was arranged in front of various machines, which then took images of my retina.

After all that, I was told that an ophthalmologist would take a look at the images and I would be contacted in due course.

I think that it’s fair to say that I struggled with the ensuing wait. Dark thoughts seemed unavoidable. I wondered if I would lose my eye. I wondered what the modern options were for a prosthetic eye. Would it be possible to get one that glowed in the dark? What about one that had a battery and could actually emit a light source, ideally in green or red?

The thing to realise, at this point, is that my left eye has a very strong astigmatism. This means that, in terms of my vision, my left eye doesn’t actually get involved in looking directly at objects. My right eye does that on its own. The left eye does still work in terms of peripheral vision but, losing it wouldn’t be the end of the World. Although, I did worry about how it would impact on my ability to play (field) hockey.

Worse than that, though, was the implication of having a metastasis in another system. It didn’t seem likely that it would be another metastasis, but that didn’t mean it wasn’t. So the wait became increasingly draining and stressful. My sleeping, in particular, took a beating. None of which was helped by the fact I hurt a knee while I was skiing and hadn’t been able to exercise properly since.

It was a pretty tough time.

Then, on the 25th March, I got a letter from the hospital, which reported the following:

The result of your imaging investigations demonstrated pigment changes in your left eye. These do not require treatment and I have discharged you from routine review.

So, it really was all in my head. Both literally and figuratively!

At least, I thought, it would give me something to write about in the April 2019 monthly update…

And then, on April 12th, I got another letter through. Wow! The April 2019 update was going to be packed!

This letter was telling me that my medical exemption certificate was running out. The letter explained that I needed to go to my GP’s surgery and get another FP92A application form, if I wanted to keep getting free NHS prescriptions.

And, because I do want to keep getting free NHS prescriptions, I went and got the form. It looks like this:

While the NHS is ‘free at the point of care’, this does not extend to the medications that are prescribed after the fact. Patients are charged a fixed rate for each item of medication. From April 2019, this increased to £9 ($11.74/€10.46) per item. It doesn’t sound like a lot but it quickly adds up if you’re prescribed multiple items over a long period of time. Like when you have cancer. As such, cancer patients are made exempt from prescription charges for a period of five years.

The best thing about the medical exemption certificate is that it covers all medications. Not just cancer related ones.

It isn’t much of a silver lining for having cancer, but beggars can’t be choosers and I’m grateful that it’s there at all.

So, I’ll fill in my FP92A and take it back to the GP’s surgery. There, it will be signed off by my doctor and sent off to the appropriate authority. In due course I’ll get my replacement card and be signed off prescription fees for another five years.

And, because the arrival of said card is the most exciting cancer related thing that’s going to happen to me in May, I’ll pause the updates with April 2019. With luck, the August update will be utterly boring too. Something along the line of; ‘all the scans came back negative’. If this is the case, there will be nothing more for another six months.

If the scan results aren’t clear… well, buckle in. It’s show-time again!