Yet more bad news....IVE has failed...

Well, after waiting for a week or so we’d heard nothing, we kept ringing the hospital but nothing happened, they kept saying they’d get back to us but when they did they knew nothing and didn’t have an appointment for us.

I started panicking, last time we were kept waiting, it was bad news and I was paranoid the same would happen. I didn’t feel any better, was I supposed to be? My cough was coming back too which scared the hell out of me…

Anyway eventually we got a phone call. We had an appointment with Dr. Smith at 11.30am on the Friday before Christmas. I also had Hickman line care and bloods.
In our appointment we were told yet more bad news. IVE had failed. I would not be having any more of it as it was pointless. I saw two x-rays, one from August and one from a week or so before. There was virtually no change. I almost cried but I held the tears back and they didn’t come for a few days afterwards. I think I was in shock. Dr. Smith said he was worried. Dr. Haynes, the big lymphoma specialist at Nottingham was worried. Hell I was worried!! I was now going to be put under his care and everything from now on was going to be done at Nottingham.

The plan was now to try something called GEMP which Dr. Smith had to Google to find out about, that’s how often he has had to use it!! We didn’t know anything about it really, we weren’t even sure if it was an inpatient or outpatient treatment. We knew it was out of Burton’s league and Dr. Smith said he didn’t think Derby would do it either so it was down to Nottingham and Dr. Haynes.

The tumour was resisting all the chemo we had thrown at it and so they had to try something totally different. The drugs in GEMP were in a different category to everything else.

I was in shock for a few days I think and I didn’t really want to talk about it too much at first though I did eventually. It was a tough time and just before Christmas wasn’t the greatest timing.

By this point I had had no treatment for over 4 weeks and my symptoms were rapidly returning, the cough, the breathing, the suffocating in my face, headaches….everything was coming back and we were worried….i wasn't eating well, just chicken mainly! And I had no taste for chocolate....or tea and I hadn't since I'd come out of hospital with the IVE. The pic is of Nottingham City Hospital, the main bit but we go to the Hemotology suite.

We got a phone call on Christmas eve morning to say could we come over to Nottingham ASAP to meet with Dr. Haynes….so off we drove….an hour later we were in the day-case unit…