@Firework73 the breast cancer now website has a forum that includes a monthly chemotheraphy starters section. it is very well moderated by qualified Breast Care Nurses and tbh the woman who post there will know or at the very least have a very good idea of what you are trying to cope with. They are willing to share things they have found helpful, how to get the best out of the medical teams looking after you, eating when it’s not easy and what is within the new normal. TBH I have found it a sanity saver and a lifeline as IRL I do not know anyone around me who has been in the same kind of boat.
Please bear in mind you can ask to see the Chemotheraphy ward before you begin treatment, you will get a booking in visit before treatment when you can ask the chemo nurse any questions you want dor feel you need to. please be aware they have to inform you of all the possible side effects which is a bit scary. BUT that does not mean you will have them all nor all at once. It’s so you are aware. Almost every hospital has a 24/7 cancer treatment helpline you can contact 24/7 for advice once you start chemo, Ìt really is okay to call them as they are there to help syou stay as well as you can and would far rather pick up on any possible issue early than leave it till it becomes a significant problem.
Do keep every blood test, they are done to ensure you are as fit as you can be prior to chemo. a it’s not unusual to have one or two sessions defered to give your body a few more days to get back to chemo fit and if. You needed any transfusions of platelets, blood or needed any extra minerals etc those are picked up early too. REmember if it happens you have NOT failed its just chemo can be demanding physically.
Aim for prehab if you can, that helps you get just a bit fitter, eat better and helps you cope a bit better. some hospitals offer prehab so ask, some charitable cancer care centres do too so again ask your BCN team as they will know what is around in your area.
Chemo is boring so take in what helps you to relax a bit be Ìt an iPad, book, fluffy blanket from home. I recommend taking in extra drinks must in case as my first chemo the tea lady was off sick and. No one could cover so the nurses could only provide water. Chemo ward food tends to be very bland so take in a few snacks you can face. Most find OJ with a simple protein based sarnie is enough. most hospitals try to provide this so check if your does. Take some none smelly fruit to nibble too (others on the ward may be able to face drinking OJ but object to the smell of oranges being eaten due to how chemo makes their noses super sensitive) and also an ice pack in an insulated sarnie bag as you will need to take blood cell boosting injections home that need to be kept in a fridge more important if you have to travel to your chemo unit. (Most of the Chemotheraphy drugs for breast cancer can hit those hard so hospitals take a proactive stance to help your body to help you) It is also okay to get someone you trust to she’ll administer them as some can self administer and some cannot. I cannot so need help.
Expect days 3-6 post chemo to feel rubbish and then slowly improve. Expect nothing to taste as you remember it and remember each round will be different so keep trying to eat or try drinking what was not good the last time.
The staff are there to support and look after you. IF you have any questions quizzes them, if you have any concerns during treatment let them know, if you have any worries they are there to support and either help if medical or signpost if not with those too. IT is okay to feel how you feel and tbh you might find it helpful to call either the BreastCancer Now helpline (staffed by specilist breast care nurses who have trained in cancer) or McMillan’s Cancer Support Helpline and opt for the chemo nurses section.
I can assure you chemotheraphy nurses have to undertake a lot of extra specilist training and then ongoing training. they will watch you like a hawk for the first session just in case and they do react very fast if like me your one of the less than 10% who have an adverse reaction to the initial drugs. EVen if that did happen they will contact your oncologist and even if that cannot be contained due to an allergy then your oncologist can and will look at altrnative drugs that they can prescribe instead of the first lot of chemo drugs. I know I have been there and had three very scary adverse reactions in a row which delayed starting as I do have an allergy to the carrier used in ducataxel and paxitaxel so I now have albumin carried abraxine instead. THat is how I also know the nurses are very fast in reacting if you did have an adverse reaction and that oncologists will work hard to help manage both reactions and side effects. please remember most will cope fine and just need extra reassurance from staff to get through the first time.
Chemo can make you feel very teary and Ìt may well amplify any feelings you have, keep a diary so you can track how chemo affects you physically, mentally and emotionally so you get an idea of how it can impact you personally. I also record my temp, time I take drugs and what food I eat and what I drink just so I can double check I have hit the needed 2+ litres of fluid per day and my temp is okay and I list sideeffcts as well so I can let my oncologist know as they work very hard to help me keep them them within what I can cope with.
Expect to loose hair as even if you cool cap Ìt can thin and go in clumps. CAncer Hair Care is a useful Uk charity website with tips on how to look after what hair you have and if like me Ìt all goes, how to look after your scalp and encourage new hair post chemotheraphy.
I have just completed round 5 and will be seeing the plastic surgeon on Monday with (hopefully) last chemo pre surgery on the 8th July.
I know this side Ìt looks like you are being asked to free climb a sheer mountain with no training, very little equipment or prep rather than the marathon some describe BUT keep going and remember it’s okay to reach out for support and help from others as and when you need it.