Clinic....Derby and Burton

After my IVE I went into clinic about a week or so later. This was in Derby’s day case unit. When I got there they didn’t seem to realise I was there for Hickman line care and tried to take blood the normal way! They also said unless I was having Hickman line care I could expect blood to be taken in the normal way as it took too long to do it through the line. I was upset as I had been told before I had my line in that bloods could be done through it every time and it would make my life easier! They also wouldn’t allow mum and dad to be in the room with me while they did bloods, hickman line care and took my stitch out so I wasn’t impressed!

When we asked about the Hickman line packs and instructions for the district nurse which we had been told that normally they could do, we were told that actually that was too much paperwork and I would have to come into the derby hospital clininc once every week just to have my Hickman line flushed (to check its working) and blood taken. A 5 minute job and a half hour drive.

I was not impressed and i told them so. I think I got to the point where I was so sick of being told one thing and then something else happening, even minor things irritated me and I told them so! The nurse I dealt with was so hot and cold, one minute she was all sweetness and light and really nice, the next she was moaning at me because I cant inject myself with the GCSF injections (her comment being 'well what would you do if you were diabetic? - good for me I‘m not so why should I worry!!). After this the nurse then kept telling us how when I had my stem cell transplant I would be back and forth from Nottingham and I should get used to it - she didn’t seem to understand that wasn;t our issue!! It just seemed silly traveling all the way to derby for something that could be done at burton or even, if they’d got their act together at home.

Anyway I let my feelings be known to them, something I’d not done before and I have to say I felt better for it. As a result I managed to persuade them that I could go into Burton for the aftercare which wasn’t ideal compared to the nurse at home doing it but was better than going over to Derby every week and it was with people who I knew and liked and got on with.

I do get worked up sometimes and that was a classic example when little things don’t go to plan it really upsets things. The organization somewhere had cocked up and it was me that paid for it. So overall I wasn’t impressed with the day-case centre at Derby though the ward staff were fantastic.

The second appointment the following week was therefore at Burton and all went ok, I had a small wobble where I went a bit faint, probably from overdoing things a bit but I had felt not too bad! I was checked over and was fine. I had an x-ray anyway and was sent away knowing that I would hear from the doctor within a week or so. This would tell us what the effect of IVE had been and when my next dates for the second round were.