So in the end, my daughter agreed to go for her 4th and final BEACOPP yesterday. It was delayed for a week because she was adamant she wasn't going to have it, but eventually she agreed. An hour before the final infusion finished she started vomiting despite all the anti-sickness she was given and then didn't stop for 18 hours and which point, the other end started (politely) We rang the emergency number and explained that we couldn't get her to come in for day 2 but they were lovely and said come in so we can at least rehydrate and take some bloods and go from there - no chemo today though.
She was carried to the car and driven to the hospital. They put her in a bed and eventually gave her iv anti-sickness and fluid. We were there from 10:45 until 6pm during which time she told her consultant that she was not finishing the rest of the treatment and asked for her picc line to be removed. Although all the nurses were shocked at her decision, they were very understanding. The consultant clearly disagreed with her decision but went on to say he wouldn't take the line out just in case she needs a blood transfusion in the next couple of weeks. He said that there were plenty of different anti-sickness meds and she could take several at once - frustration here because she's been going through this since January - why is this only being mentioned now?
So here we are again, worrying for her health now, worrying about her recovery and I guess ultimately whether or not this will increase her chance or it coming back.
Hi BobbieRosie and sorry to read about the challenges your daughter had.
It’s unfortunate that you had not found this group at the start of her treatment as one of my top tips about nausea and sickness was to ensure to be reporting to her team that the meds are not working as indeed there are lots of different types…..
Over my main 2 years treatment I must have went through them all and back to the start with some of the first ones…… the body changes during treatment so what was working at the start needs to be changed to fit where the sickness and nausea has developed…..
As for the future…… not completing the full treatment course is not a definite sign that she would relapse in the future…… and over my years volunteering on this platform and on the various Lymphoma Actions various Support Platforms… I have talked with many folks who have not completed their treatment and most go on and live normal lives….
It is what it is… she now needs to move on from here, build herself up and slowly get into a new rhythm of life.
She will most likely not be able to mentally and even physically be able to step into her old pre-HL life….. but it’s in her hands to develop a new way forward looking to define how she lives now and not letting the past experiences define her.
This is not going to be easy…. there are tools like check for a local Maggie's Centre as these folks are amazing and run a great Where now? course
Lymphoma Action un the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
((hugs))
