Hi,
After having a very rocky road leading to the start of chemo. I now find myself petrified of my next treament .
*My pre chemo pack came through the post (early February) Only to find two blood request forms for two completely different patients, with full personal information on both.
My first negative ecounter. Was dealt with quickly. But surely should
never have happened?
*After having a very pleasant first cycle of chemo with a wonderful nurse who put me at ease. I finally gained confidence with the team.
*My next cycle was cancelled twice due to high liver enzymes which were not recovering , and was sent for a liver scan. The scan proved to be very positive, and there were no issues.
My chemo team told me to get bloods done for chemo provisionally booked for 14th March.
*I went to get my bloods done , and when I got there, the chemo team had not requsted the blood tests with the bloods department. This resulting me to physically go to chemo the suite to get them to request the bloods , then go back to bloods to have the tests done.
Anxiety levels rising …
*The next day being worried that my chemo was going to be cancelled for a third time ,I phoned the chemo suite to find out my results to see if my chemo for the next day would resume.
I’m a single parent of two autistic kids one of which is severe. So child care had to be re arranged short notice if treatment was cancelled.
I was told that my liver enzymes were still up and now would have to wait for oncologist to make a decision on my treatment plan when ever that would be?
*Out of curiosity I phoned them back the next day as i had heard nothing, only to find out that they did hear from the onchologist and that my treatment the following morning will resume with a lower dosage.
Except no one thought to phone me and let me know, and now I had rush all the child care plans back to where they were.
MASSIVE anxiety !
*Finally turning up to my appointment I was taken to my chair to recieve the worst treatment I could have possibly had , especielly with what I’d been through that week.
*The chemo nurse I was given was awful. I asked her for a sugical cap to go under my cold cap to protect my bald patches, to be told they didn’t have any ??? I asked for gauze, but she insisted on doing a comb over to protect it that way. This nurse was obviously anti cold capping. As she continued to poo poo the paxman and said she didn’t rate them . That if I lost too much more hair , there’s no point in continuing! I told her my reasons were to help premote new hair growth. To which she replied that cold capping have their own set backs and may cause cancer on the scalp, and they have already banned it in the U.S. !!!
It took 2 attempts to put in the cannula which was painful. She totally ignored me when i showed her the previous vein they comfortably went through. The pump kept resetting as the canula would not stay in place properly. So my line had to keep getting flushed. In the end the nurse had to physically hold the canula in place for the whole treatment, rolling her eyes every time I had a question.
Finally treatment ends , and she tried to remove the cold cap after only 25 mins, when I know for a fact it should be 90 mins. I told her, and she queried it with the other nurse who corrected her with my correct answer. No apology, and walked off.
*90 minutes later , I had to call a different nurse to take it off. Then was left sitting there wondering what to do?
My nurse aproached me after 10 mins waiting and said, “You can go now…”
But she hadn’t even booked my next appointment or arraged for district nurse to give me my injections!
" Oh haven’t I done that then? "she said.
“No… you haven’t.”
Needless to say I felt like rubbish, and when I left I cried all the way home.
Sorry for the long post but had to tell someone. And ask the question, do I have a right to refuse this nurse next time and request the nurse I had first time? What’s the best way of going about it with out creating a bad atmosphere?
I’m so down now and have totally lost faith in my teatment.
Thank you for reading x 
and 
x