So Monday is the first day I have my chemo at Lincoln County Hospital. My new oncologist seems a lot sounder than the last in that he will answer questions and doesn’t appear to be having some kind of breakdown. He’s in agreement about being seen every 3 weeks and generally we are on the same page. We get there on time and I am called into the chemo suite just before my appointment time of 11am. Hurrah! They are on the ball and do my observations quickly. My nurse, Laura, asks whether I would mind if she plugs me into my portacath as she is learning the procedure. Everyone has to learn so I say it’s fine. I have had trained nurses take 3 long and unpleasant attempts to hit the centre before and I’m sure she won’t be that bad. She is observed by a senior colleague and happily hits it first time without much pain. A portacath, for those of you who don’t know, is a device sewn into your chest with one tube going into a vein near the heart and the other end sewn into the jugular vein. It’s not really visible apart from the scars where the stitches have been. The nurse feels around it and then inserts a needle into the centre of the port which has a rubbery membrane over it. If she hits the spot, the needle goes into the port and the chemo goes into the tube then the vein. It’s a great system once the incision has healed as there are relatively few risks and little chance of infection, one of the major worries with cancer.
So by 11.20 I am wired up and having a saline drip fed through, waiting for my chemo. At about 12.20, the pharmacist appears to ask me about my prescription. He is unsure (he says there is ‘some debate’) about what else to give me. Do I need steroids? NO!! What about anti-sickness meds? I tell him I manage that orally as the nausea is unpredictable and can come on at any time. He offers to give me Ondansetron, a strong anti-emetic with the chemo. I tell him this is unnecessary as I have Domperidone, a lighter version, at home and that this is fine for me. After some humming and ha-ing, he goes away saying he will go and sign the chemo off. I wait. A nice lady brings me coffee and biscuits and a bit later a sandwich. People come and go but I am still sitting there. I just feel more and more upset. I ask the nurses when the chemo will be ready and they check with pharmacy but say it isn’t ready yet and apologise again and again. I ring Mr Mason, who is waiting in the reception, and advise him to go and get a sandwich and possibly let the dogs out of the car as they are waiting patiently for us, the infusion only due to take 30 minutes.
By 2.30 I am distraught and, despite my best efforts not to, start crying. A lady sitting next to me alerts a nurse who asks what the problem is. I explain I have been there since 11am and I just want to have my treatment and go home. She promises to go and ring pharmacy again. At 3pm, the pharmacist is back on the ward having a lovely chat with a patient which seems to go on forever. I stand up and stare and stare, willing him to look at me and feel guilty that he hasn’t done what he said he would. If I was not wired up, I would go and interrupt him and ask him what he thinks he is doing. I rarely complain on the wards. The nursing staff work so hard and I know there are things that go wrong which are rarely their fault. He manages to ignore me although he must feel my laser eyes burning into him. Another nurse comes by to apologise and, seeing I am so upset, asks Mr Mason to come in and placate me. I am seriously thinking of just taking the needle out by myself and going home. Mr Mason persuades me this is not a good course of action and goes to let the dogs out once again. I feel angry on their behalf. Eventually, at 3.30 my chemo arrives and the pharmacist has ordered Ondansetron despite our earlier conversation. The nurses call him over and ask how they can override the system as I refuse to have it. He looks at me and says “Hello” without smiling. I stare back and don’t even bother to reply. He blusters that he has to add Ondansetron to the prescription and I repeat I neither want nor need it. He looks at me as though he has picked me up on his shoe and I dare say my face isn’t any nicer. My laser stare wins, I am plugged in and off I go. The actual treatment takes 30 minutes so even with the needle insertion and flushing of the port, the treatment should take no more than an hour. I ask the nurse whether there are very few patients on this treatment as that would explain his uncertainty but she tells me that they have quite a lot of patients on Kadcyla so why he’s been faffing around, I really don’t know. Chemo is finished and a flush is put up but on an incredibly slow drip. After 20 minutes I grab another nurse and beg her to take it down. I am done. It’s all fine. 2 of the nurses urge me to make a complaint. I explain I don’t wish to complain about them as they are doing a great job but they insist I should and that they will not take it personally. It’s next on my list today. We leave the unit at 4.30, 5 and a half hours after I arrived for a 30 minute treatment. I feel exhausted, wired and just want to get home.
Driving away from the hospital we are almost immediately in countryside which is really quite soothing. It’s a very different drive from the one home from Charing Cross. I see a sign advertising guinea pigs for sale at £9 each. I tell Mr Mason “Guinea pigs for sale, £9 a kilo”. “Really?” he says but I can’t keep the cruel joke up and tell him it’s really £9 each. Then it sets us off wondering whether it would be better value if it were per kilo. It depends on whether you are going to eat them, I suppose.