@jenniferguess hang in there as best youCan. Written as someone whose adverse reactions and delayed reactions that have been so awful none of the chemotheraphy nurses nor BCNs thought I would manage chemo.
I have however had a very caring, compassionate and proactive oncologist who has fought my corner, worked hard to come up with a regime that works that my body has not reacted to in minutes and made sure Ihave extra support from the most qualified chemo nurses they can organise for me.
It’s okay to use the hospitals 24/7 number if you’re not sure something is right. They would far rather you call early in case something is not okay than leave something only to land in trouble and need a lot more care and help. From seeing so many others any maybe of possibility of neutropenia sepsis is treated extremely fast as that is your own immune system going a bit rogue and absolutely not your fault, nothing you did wrong and it’s always hit with antibiotics just in case one of the bodies normal resident bacteria gets the silly idea to try and organise a party at your expense. So far not a side effect that has hit me. I have an allergy to penicillian on top of b.a side effects so my oncologist advised me to avoid enclosed crowds and be wary around small children as its chickenpox season and I have never had that.
Skin reactions; Chemotheraphy dies out your skin and if you had an atopic tendency and or excema its liable to become super sensitive and reactive. Take photos of any skin reaction to show your oncologist or chemo nurses. That can help them to help you. It may be a delayed chemotheraphy reaction, Ìt may be an allergy to something used from the stuff they clean the chemo chairs to the sticky tapes used to hold everything I place to a previous skin condition flaring due to chemo to a mix of all or any of it. There are drugs and soap substitutes etc your oncologist can prescribe if you’re struggling so be honest with them
I had terrible skin reactions to both the chemotheraphy chair cleaning agents that suit most ( looked badly sunburned from chemical atopic reaction) and also the absorbent mat ( looked like very bad sunburn as it removed my skin and left Ìt red raw for three weeks. Solved by taking in 100% Cottonsoft pillowcase for over absorbent mat and single Cottonsoft sheet to throw over chair. Took in own as hospitals use bio laundry agents to wash their linen and guess what..yep skin reacts badly to that too.
If it makes you feel less alone I was waliking five miles a day and engaging in prehab eating a wholefood veggie diet. Started chemo and side effects knocked me for six. Could noteat normalwholefood veggie Diet and have ended up having to eat meat as my entire digestive tract rebelled to chemo.Have learned to try and do a bit then rest for more than I think, do a bit more. I cope by choosing one thing l need to get done each day so anything on top becomes a bonus. Try not to compare yourself to others as some sail through with minimal side effects, some get a mixed bag that can change with each round so it becomes a mix of some awful, some not so bad and some wondering why you have struggled. A few of us get handed ghastly. (Holds up hand)
if you find you are really struggling you can call your oncologists secretary. The huge majority are compassionate. Explain some of the issues you are having and ask if it’s possible to see your oncologist face to face before your next round. Itis your oncologist who has the power to sort out drugs etc to help manage side effects, work out If you need a lower dose or slower delivery sometimes both to help your body cope with chemo. If they suspect like me you have an allergy or really scary Chemotheraphy response they will work out a plan B and still have a plan C, D etc. REMEMBER with the best will in the world chemotheraphy nurses can only give you what an oncologist has authorised so if you leave it till chemo day you may find your in all day and possibly longer whilst they try to track down your oncologist or dr on their team able to look at your drugs.
Today I have had my last chemo before surgery. A place l never thought l could get to as I have had to use the red card for advice on drug reactions, a bloody awful delayed skin reaction plus excema flare from hell, entire digestive tract issues more than once to the point l have not dared be anything but dash distance to my loo, severe anemia needing blood transfusions, inability to eat and have not been in the kitchen apart from making tea and the rare very light lunch, eyes etc so dry Ìt set off styes and eyelids I struggled to open
So hang on to the end of your thread, reach out to people on this forum, call the BCNow helpline, speak with chemotheraphy nurses and your hospitals BCN. Remember an oncologist can often make your world a nicer place to be in but it may take trial and error to find what helps you.please know you are not alone in finding Chemotheraphy a darn hard slog to get through. Take it a day at a time and if need be an hour at a time. You will get there with a good medical team taking your back.
I can recommend keeping a diary of drugs and time you take them as sometimes your oncologist may find tweaking times and food and drink can help, temp, food you can eat, drink you can face. Itis not perfect but does give the data the medical staff need to begin to work out howto help your body to help you.
xx
Sadly no cake or balloons in the party bag though . Hope everyone else’s week is going well xx