Hi Jippy
It feels daunting. No, it feels terrifying. However, I found the anticipation was the worst part and I’ve suffered from diagnosed anxiety and panic disorders all my adult life! I also, as I frequently joke, get a side effect just walking into a pharmacy. Be prepared for a long wait if they need to test your blood first. Then of course, the cold cap needs a lot of time to get ready (I chose not to have this). Once you get started, you’ll be fascinated by how the nurses interact to ensure each patient gets exactly the right treatment. They’ll soak your hand to get a good vein (unless you have a picc line, which would have been discussed). If you are lucky, you may get a lovely cosy heated blanket for your arm. You’ll have some saline flushed in (I sometimes got a faint chemical taste that soon passed). Then you have your prep. This is the important stuff for your fears - an antihistamine, an anti-nausea drug and a steroid. I had an anti-emetic to take orally too. This takes about half an hour. Depending on how quickly you’re given the steroid part, you may experience some strange tingling that felt to me like sitting buck naked in a nettle patch, but again it soon passed.
After that they start with either the E or the C. I didn’t feel anything but be warned - your pee turns pinky red from the E treatment. It lasts a couple of pees but could be a shock. That’s about 2 hours of actual treatment. A final flush through with saline and then you just have your cold cap to deal with. I believe it adds a couple of hours on. Then you’re free to leave with your essential goody bag from the pharmacy. You’ll probably feel quite chirpy - I called it the steroid boost. The goody bag contains steroids to take orally for 4 days - that sees you through the most likely days of being sick - but you’ll also get anti-nausea meds, laxatives (IMPORTANT), soothing mouthwash and other things depending on your health. If it helps, in my 13 treatments in the chemo suite, I never saw a single person be sick. People sat and chatted to their friends or across the bays. I saw one allergic reaction and, without exaggeration, she was happy as Larry 5 minutes later. One person out of several hundred patients is pretty good odds.
I had my first treatment on Christmas Eve. Christmas Day I spent over £1000 on clothes in the online sales (the steroid boost!) but a lot got sent back. The steroids may make you feel fine for those first days, which is good for the confidence. Then you may have a slump but everyone responds differently so there is absolutely no way of knowing how you’ll be. What will be will be and let’s hope you’re one of the many OK ones. It’s not brilliant but it slowly improves almost back to normal. Then you start the next treatment.
I’d say definitely eat before. It’s a long time without food (my hospital brought round sandwiches, tea and biscuits etc) and you don’t want low blood sugar. If you’re too nervous, take a sandwich or bananas with you. Water is there aplenty - drink it. A straw can help if you’re one-handed. You can wheel your drip to the loo and get better with practice. Small sugar free sweets are good and biscuits/crackers you like - but your sense of taste will change over the days/weeks. Don’t expect to do anything that requires both hands - one will be fully occupied with the drip and if you move it too much, it impedes the flow and off goes your bleeper (a sound that still haunts me lol). Good calm company is best, someone who can chat and distract you but respect your space if you need it. One of my friends has a needle phobia, not a good choice!
I’ve tried to take it stage by stage - sorry it’s so long. Please check your thermometer is accurate and have a backup. I cannot stress enough how important that is. Mine was faulty and I ended up with 4 days in hospital with a runny nose which would have been avoided if I’d contacted them when my temperature soared and got my antibiotics in time. But I trusted my thermometer and it said 37.5, not 39.5!
Above all, share your anxieties About adverse reactions with your nurses. They may get the oncology doctor to talk to you and reassure you if that has not yet happened. I was given two types of anti-nausea drugs to use at home just in case. I never used one. If your fear continues, ask them if they can help with a mild sedative - that’s what I had prescribed by the oncologist and I’m eternally grateful. All the best on Monday - I hope, like me, you’ll come home shattered but wondering why you’d felt so fearful.
Take good care of yourself,
Jan x