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Finding the right words…

Forums Caregiver Community Finding the right words…

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      As the side effects separate one from being able to “live”- and the question of quality vs quality echo- what words can a caregiver/family give to the one wanting to give up?
      From 100% active and full of life to basically lifeless due to the fatigue, dehydration, thrush, perceived inability to swallow due to radiation near throat… in a nutshell “severe toxicity.” Again….
      The feeling that the tumor is bigger and physically you are getting smaller. The lack of wanting to understand immunotherapy takes time. And three treatments – now the hopeful benefits will start showing.
      My dad can barely move from one room to another- four hours a day at the clinic for IVs of saline, potassium, nausea and the last one escapes me. He is done emotionally-
      Sympathy -Empathy -Support -Holding his hand -Positive Reinforcement- Reminders he is all most done….
      Are all words and actions that almost make it worse for him.
      Are there words? We have told him it’s a process, we have encouraged him to not make decisions such as stopping treatment on a bad day- wait for a day that you feel OK- then tell us you want to stop.
      For everyone on the forum and all that consistently share their wisdom and experiences I am very grateful- this page is amazing.
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          So sorry for what your dad and the entire family are going through. I can just offer advice based on my own experience and that of my loved ones, both family and friends who have gone through a variety of health challenges. I know that you may feel like you are not doing enough, yet it may be that you are doing too much. If possible have a patient who has undergone the radiation treatment speak to your dad. Patients often relate to each other in a unique way and this may be just the spark your dad needs. Relentless nausea is devastating. A nurse recommended a CBD oil. Apparently if nothing else works, it does as per numerous cancer patients. Drs may be reluctant to prescribe it so you need to ask for it. Once his nausea stops, hopefully he can regain his strength and attitude. In the meantime, continue to offer support, remain strong, don’t take things too personally and just know that your dad loves you and appreciates the encouragement but just cannot help himself right now. It is also important that you take a break for yourself every once in a while. Music can also be healing and inspirational. I hope this is just a bump on the road to his recovery.
            Hi – I’m so sorry your dad is going through this terrible time. On top of everything else, the clinic visits must be so exhausting for him. Does he have the option to have the daily infusions done at home by a Home Infusion nurse? My husband developed an significant mouth ulceration after neck radiation that let to placement of a feeding tube. During this time time, he was also receiving daily antibiotic and saline infusions at home. While we were trained to do the infusions, he also had a nurse stopping by to re access his port and check on him. A daily trip to the infusion center would have been unimaginable in his condition. And he wasn’t on immunotherapy at that time! This was in 2012/13 – finally got the feeding tube out and resumed eating by late 2013. He’s still here after multiple brain surgeries, immunotherapy and other treatments. There is hope.
              First and foremost, a big virtual hug to you. You, your family and your dad are really in the belly of the beast emotionally right now. You are doing absolutely wonderful as a caregiver and in many ways it can be even more emotionally tough on you since there is no control over anything in this situation. His body is fighting this with the treatment and he is expectedly exhausted. all these things he is dealing with are treatment related, hopefully he can hang on to that and know that there is light at the end of the tunnel when he won’t feel this crappy. I’ve been there with both of my parents with cancer and progressive neurological disease. Just tell your dad to take it easy right now and let him know that you got his back on this. Tell him to let his worries be your worries and that he just needs to focus on being whatever he needs to be for right now however that looks. He knows that you all are doing right by him with your choices for treatment, he unfortunately is going through the actual treatment. I remember when my dad had dementia (he was much older than your dad and this was part of his progressive disease), I would at first try to fight it and try to make him understand “reality” and then I realized, what am I fighting here, hey let’s just be a part of his world and go along. It was a real release. This is a temporary reality right now and this treatment is so tough, just get through and know that you are doing awesome, no easy answers to this one. My dad yelled at me a couple of times (dementia can cause anger) and at one point I brought out the big guns so to speak and just told him his wife (who he had loved dearly and respected more than anyone) would tell him to get a grip and be compliant and stop it (us Irish know how to guilt someone for sure) . You do what you go to do and it’s a day by day thing for sure. The treatment may be so tough on days he wants to quit, just get through to the next day and see how it goes. He’s gotten at least several treatments of the Ipi/Nivo which is a real win, even if for some reason he can’t do more. It does take time to see the results and from this board you will see that it can look darker before the light with this treatment. Bubbles/Celeste has the data on how even getting some of the treatments under your belt can have long term good outcomes. You are doing fabulous and your dad knows how lucky he is to have you right there by his side. Hugs
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