Jippy, I hope everything goes well tomorrow. I'd definitely recommend wearing the travel sickness bands. I wore them when I had chemo in Oct'17 and wasn't sick at all. I wore them whilst I was having the chemo and for a few days afterwards x
Thanks to you all who have taken the time to post, give me advice and reassurance. Much appreciated I feel I now have a way forward. I haven't been sleeping well although this has been a problem long before my cancer diagnosis but in seems to magnify everything else when you are tired.
Hi , I had my first EC 10 days ago, and also used the cold cap , it took about 4 hours in total although the chemo bit was only about an hour. I was so anxious about having the medication ( I’m a nurse and was totally paranoid about having a reaction!) but the nurse was so calm and explained everything so well, it really helped. The E part is syringed in by the nurse over about 20 minutes and they are constantly watching for any problems , the c bit went in through a pump. I didn’t feel a thing and felt well until later in the night when I felt a bit sick and my legs turned to jelly, but I went to bed and used travel sickness bands which really helped.
I didn’t eat anything before, And just drank loads and loads of water throughout.
Take something to read or a crossword or something, it’s pretty boring . Also take something nice and warm to snuggle in because the cold cap does make you shiver . I also took conditioner and a wide toothed comb for preparing the hair and also an old fashioned hair band to put on to keep your forehead and ears warm .
Good luck and I hope it all goes well xx
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,
Shi has given you some good advice there. All I can add is that I had 6 x EC infusions and did not have hardly any side effects however, I had read that some people had fasted the day before, the day of the chemo and the day after as they found it helped them with nausea but I found the total opposite. I tried it on the first infusion and suffered terrible heartburn that night and the next day, it was very uncomfortable and needed the extra meds they give. I then realised that I was actually that hungry the acid in my stomach was playing up big time, as soon as I ate a full meal everything settled down. After that I made sure I ate before I went for chemo and at my usual mealtimes after (or as near to it) and I never had another problem with it - the anti sickness meds I was given to take an hour before chemo was sufficient for me.
I did develop phlebitis after my third infusion but apart from that I had no problems with the EC and found it very doable. I had Zometa infusions every 2nd chemo (3 in all), during these cycles I felt very tired for two days then picked up - never felt fatigue on my EC only cycles and was really pleased when my final infusion was EC only.
There was plenty of people eating sandwiches and other food whilst they were having their chemo without problems. The ladies who were cold capping were drinking hot drinks as that apparently helps with the headache. It isn't something I am familiar with as I didn't cold cap.
Drink plenty of water for the next few months as it helps with the fatigue. Give me a shout if there is anything else I can help you with.
Sorry just seen you put ec. Are you having a pick or a port put in or just into hand? Ask for heat pad on arm if into hand it can help veins ❤️💕💕✨✨shi xx
Hi Jippy, sorry you find yourself on here, please jump on October 2019 chemo starters thread or onto November 2019 chemo starters thread 👭👭 what Chemo plan are you having? There are so many different chemos if you let us know, lots of help and support available on here. ❤️ You should have a rapid response card from your team always ring them if you don’t feel right even with no temperature. Shopping list ready for chemo, thermometer, anosol, baby bum wipes (steroids can block bum up) if your antisickness meds don’t work let your unit know they will tweak till they get it right. Some people used travel antisickness bands while on chemo too. Book your look good feel better session with your Macmillan team at your trust too 👍 keep your fluid intake up during chemo, helps flush everything through ❤️ 👭💕💕✨✨shi xx
I have my first chemo session next Monday and am dreading it as I don't react well to a lot of drugs. I am having EC.
I am scheduled for 2pm and am planning to cold cap, Should I eat lunch before the session?
Also what should I take with me, any suggestions?
I read somewhere that someone said don't take anything you like to eat, in case you are sick/nauseous as you will never eat that food again.
Sorry if these seem silly questions but I want to be prepared.
Any advice welcomed, thanks