Don’t cry for me, oh Ryvita

The saga continues.

Last Wednesday I had my ultrasound at the hospital to see if they could tell why I’m still having so much pain. The lady pressed the machine on the area that’s painful over and over again until I was almost crying. She even showed me the screen and said she couldn’t find anything wrong. There was no swelling or haematoma, which is good obviously, but she couldn’t see what was the cause of the pain. She did seem surprised that the port was so far over and not in the middle though. Point of concern.

Today was my appointment with my consultant. The appointment that was made because it was originally meant to be at the end of September but I told them that I can’t cope with the pain any longer and so magically they found an earlier spot.

They were already running behind when I then saw my consultant leaving the clinic because I heard him say he had an important meeting. I asked the nurse who else I would be seeing if my consultant had left. She sat down next to me, annoyed because he hadn’t even told her he was leaving and she didn’t really know what to do. She said I’d see one of his colleagues so I asked if it would be a registrar. She said yes. Great. That’s who I saw the last time and he specifically said I needed to see the consultant. It began to feel upset already.

By the time I was called into the consultation room I was already fighting back the tears. The registrar recognised me from last time (probably because I cried then too!) and looked over my notes. He examined me again and asked if I was sure the port was where I was getting the pain. I confirmed this and he now seems to think the port has slipped as it’s meant to be in the middle. He read over the notes from the ultrasound and then called the registrar, interrupting his meeting.

He explained over the phone what had been going on and they both agreed that I need exploratory surgery. After the call, the registrar then booked me in for the surgery and for another meeting with the consultant in two weeks’ time. He explained that initially the surgery would be exploratory with the probable need to re-position the port. He said it might’ve been caused by a suture that was too tight and it’d been pulled to one side and therefore causing the pain. Although he did have to explain that if there was an infection under the port then they would need to remove it and the tubing until the infection had healed.

Worst case scenario: there’s a bigger infection than anticipated and the entire band would need to be removed. They would they need to wait for the infection to heal and apply for more funding from my PCT for further surgery to replace the band. But, he said that as I’ve already had the surgery and this issue is through no fault of my own then the funding should come through a lot faster than before. I know this is worst case scenario and he said he’d only seen things once or twice but I really REALLY hope it doesn’t come to that.

I’m feeling so crap about all this. I feel like a failure. Like I’ve let everyone down because I haven’t lost the weight I’m meant to. I was weighed before my appointment and I’d lost 2lbs since the last time I was there according to the nurse. That’s 2lbs in about 6 weeks. It’s rubbish. I know the registrar and other people keep saying it’s going in the right direction but it’s still rubbish. I expected it to be more. I didn’t expect complications but that’s a disappointment too. I was really looking forward to being thinner… Guess I just have to wait longer.

Me and Lindsey with the Team GB women’s sitting volleyball athletes Martine Wright, Andrea Green and Emma Wiggs.

In other news (and going off topic a little), I went to the Paralympics on Saturday and Monday. It was amazing to see the athletes competing and actually forgetting that there were disabilities involved because they were just so fantastic at what they do. It makes me feel guilty for complaining about some pain that I have and can be fixed. I think my favourite athlete of the whole games has been Martin Wright.

Martine Wright was on board one of the Aldgate underground trains in London during the 7/7 bombings. She lost both her legs when the bomb went off five years ago and now she’s representing her country in sitting volleyball. She is an incredible lady and her being there is just a massive middle finger up to terrorists and terrorism. I had the sheer privilege of seeing her and the other Team GB ladies play on Saturday at the ExCeL Centre and then meeting her on Monday at the Olympics Park. Lindsey spotted her and two of the other players so we took the opportunity for a photo. She is an inspiration and I’m so glad to have met her. That was the highlight of my weekend.