Eventful Week!

Actually, this eventful week started last Friday (7th Aug) when I was walking upstairs to start work first thing in the morning. For the first time since the Serious episode just before the Gamma Knife Radiosurgery in February and the discovery of the second tumour in the optic nerve area I had a flashing lights episode serious enough to obtrusive. The big difference this time was I also experienced a mild headache in left frontal area of my head and that the episode lasted and lasted rather than stopping in just a few minutes as before.

After three hours the visual disturbances were still as bad, in fact worse with blurring of my vision making reading and working almost impossible. At this time Lynne and I hit the phone and started seeking advice and assistance.

My first port of call was Kate Casey at the Gamma Knife Centre, but I had to leave a voicemail on her answerphone service. Lynne tried Gill Newsome, the Chemotherapy Nurse working with Dr. Conn, but was transferred to Ward 1 as Gill was not in work. So I also rang Westcliffe Medical Practice to talk to Dr. Rehman. Very disappointed to learn that he has now left and gone Locus. Also Mary Cuthbert my responsible GP was not available either, so had to agree to a call back from Dr. Pickering instead.

While waiting I got a call from Dr. Bradley who works with Dr. Conn, as he was on holiday for the week. Although aware of my case notes he was leaning the migraine route. During my call from him Dr. Pickering called me back, so I put Dr. Bradley on hold and asked Dr. Pickering to call me back in a few minutes. Dr. Bradley then offered to speak to Dr. Pickering and keep him in the loop of events.

A while later I received a call back for Dr. Pickering, who updated me that he had spoken with Dr. Bradley and that Dr. Bradley had referred me to the Eye Casualty Dept. in Ward 18 at the BRI as he wanted to be sure there was nothing physical going on in my right eye retina that needed me to attend there at short notice.

A little later again I received a call from Dr. Adeeb from Eye Casualty and he did a detailed phone consultation. Towards the end he actually chuckled and told me I’d described a text book case of Migraine. So he did not ask me to go in but to monitor what was happening and to call immediately if things deteriorated. (In retrospect, this really was a risky course to take methinks.)

So it was with tremendous relief that I picked up a return call from Kate Casey. And she was truly wonderful, swinging into decisive action. She agreed it sounded like a migraine, but with my background the concern is what is the trigger, which is often intracranial swelling. She took a few minutes to make a couple of calls and then phoned me straight back. At which time she had an MRI slot booked and an agreement with Dr. Hatfield to squeeze me into his Tuesday morning clinic. I just had to get to St. James by 08:40.

In the meantime she wanted me to take 4mg of Dexamethasone and doses of Ibuprofen and paracetamol. That required arranging for Dr. Pickering to write me a prescription as I didn’t have any left as I’d first thought. I must have taken it in with other expired meds the last time I’d been to the pharmacy at Westcliffe. Lynne was a star and went and collected the steroids as soon as they were ready. The rest of Friday and the weekend were spent dosing with meds and simply waiting for the time to pass. The actual visual disturbances went on until around about Sunday lunchtime. So it was a relief when they finally calmed down and stabilised. Kate Casey was very attentive in checking up on me over the weekend to be sure all was okay.

Monday morning towards lunchtime I got a call from Dr. Conn’s medical secretary at the Yorkshire Clinic asking me to attend at 18:30. Lynne had the brilliant idea of taking the dogs to Sunnymede so that they are safe and cared for while we do that and for the long day ahead at St. James the following day.

The session with Dr. Conn held no surprises, he really needed to be sure there was a plan in place after the update he’d had from Dr. Bradley and to assess if it would impact the last Chemo cycle starting on Thursday. The conclusion was that we proceed as normal. But he fully expected Dr. Hatfield to put me on onto some sort of anti-seizure regime in response to what had happened.

We were early to the station on the Tuesday morning and got an earlier train than planned, which made getting a taxi up to the hospital from the station a relaxed process and we had time to sit and have a cuppa before heading into Radiology. The scan took about an hour and half overall, quite a lot of waiting but 35 mins in the machine itself. Then it was upstairs to the Gamma Knife Centre to wait for Dr. Hatfield to fit us in. Watching the staff, especially Kate Casey at work is an inspiring thing. They are so dedicated.

The scan itself was good news – at least that was a real plus thing. The surgery site and the optic tumour have continued to shrink and the wee shadow next to the optic tumour is unchanged. Dr. Hatfield confirmed his diagnosis of me having seizures, ‘mini-seizures’ as he calls them. I think that’s his label for non-motor function seizures. I have labelled them VMS’s (Visual Mini-Seizures). And sure enough, he has put me on an anti-seizure medication regime. A drug called Keppra, which has an unpronouncable pharma name. This is something I will have to take from now on for life. The trick is to find the right dose to hold the seizures at bay, and then after six months seizure free there’s a fighting chance I can have my driving licence back. Now that would be nice. In the meanwhile, Dr. Hatfield will see me again in November for a further three month follow up.

So Tuesday was a busy one, but with a nice break for lunch at 2 Oxford Place to make at least a small part of it for us. And Lynne pushed me and I finally gave in and got myself an Apple Watch. The mirroring of apps from my iPhone is a real bonus when it comes to reminders to take my meds, especially the new one, the Keppra. But it was a very traumatic day for sure. My hands were literally shaking with relief all afternoon.

Thursday of course was the first day of the final cycle of chemotherapy. So we had to pop up to the Yorkshire Clinic on Wednesday for Gill to take blood. She texted later to say all was okay to start the next morning. With the sense of relief from Tuesday and knowing this was the very last cycle, the session seemed to go very well indeed and we left the Yorkshire Clinic with me expecting this final cycle to be a bit of a breeze.