Cancer 110

My treatment didn’t go as well as expected yesterday. It was going perfectly well until nearing the end, where I should have my bottle/pump fitted, which I wear for the next 46 hours. Unfortunately, there was a problem with my PICC line. It had started to pull out. How? No idea, it is not supposed to move. It has a grippy thing that attaches to my skin at the point of entry, and then goes 52cm up my arm, past my shoulder, to just above my heart. It had been pulled out by several centimetres. There is a general worry here, as the previous day something similar had happened, and only a few weeks ago a whole set of PICC lines were faulty and had to be changed. My first thought is that the Government is issuing dodgy contracts to their friends, just like Johnson was doing with Covid. Or is that cynical?

So, I was all ready to leave the hospital around 1600 hours when this blew up. There was a long discussion between various nurses about the best approach, whether to attach the bottle anyway – a bad idea as the PICC line was functioning as a midline and so the drugs would not get to the right place, or send me for an X-ray to check whether the line was out of position. Sensibly, I went for the X-ray, which on inspection by a doctor, was found to be out of position. It was then back to the debate of when to remove the PICC line when to replace it, could I still have the bottled drug the following day, etc. In the end, it was decided to remove the PICC line and omit the drug Irinotecan (which blocks an enzyme so cells, particularly cancer cells, can’t grow) for this round.

I was a special patient for an hour or more. Several nurses and others were involved in working out the solution to my problem, what to do now, what to do in the future, etc. They were all excellent.

My only problem and it is a traditional problem but one that I thought was disappearing, was the doctor involved in making the decision. Once he had noted that the PICC line was in the wrong place and telephoned elsewhere for advice, instead of coming to tell me about it (he knew who I was, I had spoken with him at the desk) he went straight to the other side of the room to discuss it with a nurse. Very rude. No bedside manner. The nurse was embarrassed, calling across to me a couple of times, knowing that I should be involved in the conversation. I nearly got up and went over. I should have done, but instead, when he was leaving the room, still ignoring me, I called him over and made him talk to me, so he ended up wasting his time having to explain things twice.

Though I am in hospital a lot nowadays it is rare to have a negative experience like this. It is basic psychology. I was a patient distressed by problems with my treatment. Come and talk to me, let me know what is happening. The worst thing about being seriously ill is if people are not honest. The worst experience was the initial diagnosis of cancer. Just say I have cancer and that I am fucked. It is far better than being dishonest or trying not to speak at all to the patient.

Nevertheless, this did not ruin the overall positive experience of dealing with the problem. Hurrah for the nurses and those supporting them. They make life going into the unit more than bearable, especially certain ones. You know who you are.

My treatment should continue as normal next time. I should have a new PICC line emplaced (can you use emplaced here?) sometime next week, and for the moment I am enjoying not having a bit of plastic dangling out of my arm. On Friday I have a CT scan to see what is happening to my cancerous baubles in my abdomen. Last time the bigger one shrunk a little. I am not sure whether they can shrink much more, but they won’t go away.