A mammoth undertaking

There were three of us oesophageal cancer patients out of the four on the ward, and the other two were first timers. I found myself telling them about a typical visit to the hospital for chemotherapy, and thought it might be of wider interest. The information in this post is specific to me, so please don’t tell me that it doesn’t work that way for you or a friend of yours. Treat it as a general idea of what could happen.

Normally I know the day I will go in, and am supposed to ring at 08:30 to confirm,  but often the ward’s bed manager will phone the night before to say there is a bed free and that I should come in. Sometimes, however, there is a delay as there was this time, so there is no guarantee that the treatment will happen on the scheduled day.

Before I go, I will pack a bag of necessaries. I think you’d be surprised at what I consider necessary, so I’ll list them here:

• two changes of clothes, just in case I have to stay an extra night (as I did this time);
• enough money to get a taxi home, or the phone number of a reliable alternative transport, in case of unforeseen emergencies;
• washing things, including a flannel so that you can have a stand-up wash — you won’t be able to shower with the drip attached;
• a towel;
• snacks and drinks;
• something to keep you occupied — I like to have a choice of books, and iPod, and a laptop with a 3G dongle;
• pen and paper, to take notes about when to take prescriptions, and to write down blog ideas 🙂 ;
• a mobile phone, to keep in touch with the outside world;
• chargers for all the electronic devices;
• slippers and dressing gown;
• all the medicines I have been prescribed, including the ones left over from the last hospital visit, and my drugs chart which tells me what I take, when.

Eventually I will get a bed, and then I try to get to the hospital for mid-morning, certainly by lunch time. They will detach my bag and fit a pre-hydration saline drip as soon as I arrive. The drip is hung on a rolling pole with a pump that is set to deliver a set amount of liquid over a set period of time. The pre-hydration lasts for about four hours. Towards the end of that drip I will get the first anti-nausea injections (through the drip line), and the first chemotherapy drug, epirubicin, also as an injection or three through the drip line.

The second chemo drug, cisplatin, is given from a bag as a drip lasting another four hours. After that come two post-hydration saline drips, each lasting six hours, so the second one is put on some time in the middle of the night. The pumps have sensors to detect when any problem occurs. Each problem seems to have a different alarm code. The most common problem is an “Occlusion below pump”, which usually means that I have bent my elbow and kinked the line going into my arm. That’s a little like putting a tight bend into a garden hose to temporarily stop the flow. This alarm is a bing bing bong. After a few times seeing the nurse deal with it, you realize that by straightening your arm you have removed the “occlusion” and can safely do what the nurses do, which is to re-start the pump. Simple. Other problems are a little more complex to deal with, so take an expert. And you will get used to the sounds of the pumps’ alarms going off. They do it all the time. They even do it to let you know that they’ve finished. Bing bong.

During the day you will get a menu for the following day’s meals. Even though you’re probably going home the next day, it’s worth choosing something just in case. And even if you do go home the next person in the bed will be grateful. The meals are not huge, however, so if you are eating normally when you’re not in hospital, that’s when the snacks will come in useful. But it’s not a disaster if you forget to bring a snack, because you can buy more at the tuck shop in the main lobby. You can also get a daily newspaper. If you’re really lucky someone will bring a trolley with sweets and newspapers so you don’t have to make the trek or rely on your visitors to bring you things.

A few times a day the observations torture team come around with their testing equipment. Perhaps they won’t torture you, but because I have high blood pressure, the cuff squeezes my arm very tight. They measure the oxygen levels in your blood (O2 sats, which they like to be in the high 90%s) and also take your temperature, probably in your left ear because most nurses are right handed.

The other regular-ish round is for dispensing your drugs. You will have a lot. You will likely have your own prescriptions which you will have been asked to bring in with you, and the nurses will dispense both your own drugs and the ones prescribed during the chemotherapy itself. These are mainly to control nausea and sickness, and they work extremely well. I never feel sick at all while I am having chemo, which I put down to the this drug regime. One of the drugs you will likely be given is a steroid, Dexamethasone, which is wonderful. Steroids give you lots of energy, and they make me very outgoing and gregarious. Everyone else is on the same drug, I think, so the ward is almost always a fun place to be. There is always someone to talk to if you want to. Often the nurses will stop and chat too, even though they are very busy.

The last things that happen to me before the visit is over is that I get a new bag with the final chemo drug, 5-FU or 5-fluorouracil, attached to my PICC line, and then that I get a visit from the pharmacist to make sure that I have an adequate supply of all the drugs I need. The pharamacist will be giving you a TTO pack, which stands for to take out I think. That pack will have everything you need to get you through to the next visit you make to the hospital, which is for my weekly bag change in my case. There will also be some anti-sickness drugs, probably more than you need, so you will be asked to bring back the spares on your next chemotherapy visit. It’s worth writing down what you need to take when, because it can get quite complicated.

I have found every single chemotherapy hospital visit a really good experience. It’s strange to recognize it, but it really is true. You are totally looked after. The drugs keep you feeling good, and the people always turn out to be friendly, and to have a lot in common with you, which gives you someone with whom you can compare notes, and from whom you can get tips. Whatever it is, it’s not something to be afraid of. I welcome my visits to the hospital. You probably will too.