Hello all. I haven't been active here recently because I honestly haven't had the capacity to deal with much more than day to day life.
It's almost been exactly a year since we found out my mom is stage 4. I think the weight of last year is finally catching up to me.
A few months ago my mom went through her second round of spinal radiation after they found the cancer spread more in her spine. Recently she's been having a lot of pain in her shoulder/upper arm that the doctors are thinking might be due to the cancer spreading again. The lesions in her abdomen seem to be responding well to the keytruda, but we can't seem to get the same luck with her bones. She isn't able to do much physically because of the pain in her spine, and the idea of the cancer spreading to more bones is terrifying.
It's so hard to feel at peace with the idea of "living with cancer" when it's such a constant fight. I don't know how to even wrap my head around the idea that some things are getting better, while it spreads else where. Things feel like they are either moving very slow or very fast. It feels like we just wait for something else to go wrong so we can jump back in fight mode. I'm trying to look into some support groups in our area that my mom might benefit from, so she doesn't feel so isolated in what she's going through. It's hard for her to reach out to people, especially when they might not truly understand what living with cancer does to someone mentally. Some days she wants to give up, other days she wants to fight. This disease just sucks, in all the ways.. it truly hurts me to think of how many people have to feel like this, and try to stay strong in the midst of such uncertainty.
Love you all.
💕
Written by
H_Daughter
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I’m so very sorry that you all are fighting this disease, melanoma sucks and it will be a continual roller coaster.
I hope you can both find some support groups or connect with social workers at the hospital that is caring for your mom to help with the emotional issues that your mom and your family will have.
If palliative care hasn’t been introduced it is something to think about as they take a whole person approach to mental and physical care. You are a wonderful daughter, so many family members can become frightened and not be able to find the strength to be a care giver so please make sure you have the support you need.
We are all sending you healing and strength on this journey.
I agree with Big Sister on the palliative Care route. Don’t let that scare you. Palliative Care is NOT hospice. Although some hospice patients use it, it is also for patients undergoing curative treatment. It is a service that runs parallel to chemo, and they are experts in how to make the patient comfortable both physically and mentally. Most insurances pay for it. If your hospital doesn’t have a palliative Care team, they can tell you where you can find one.
My mom has had a palliative care team since almost the beginning of treatment. They have done wonders to manage mostly all of the symptoms/ issues she has had. The unfortunate thing is with the cancer in her spine, plus a fracture and a surgery last year, she's almost always in pain. Pain meds can help take the edge off, but she had an adverse reaction to several types last year. So now we alternate meds with doctor approved CBD and cannabis products. I just wish there was more to help her but we've exhausted every option besides having her on fentanyl, which she refuses because of the bad reactions to other narcotics last year.
Sounds like you sure are dealing with a lot. I’m so sorry everything seems to be hitting you, and your mom all at once.
I agree with everyone about palliative care. Although we have not had to seek this out for Mark ourselves. I hear from so many here that it really makes a difference for the cancer patient.
I hope you also find some help for care givers through the hospital where your mom is beeping treated as well.
Your mom is still on the Keytruda, is she getting it every 2 weeks or once a month? I just wondered. My husband was taking Opdivo every 2 weeks and they switched him to once a month for one month after over a year of doing fine on it. That one month really messed everything up. He quickly went back to every 2 weeks but it wasn’t ever really the same for him and several months later he had to stop the Opdivo because it was attacking his body.
Where do you live, and where is your mom getting treatments? Just thinking someone here may be in the area and know of places you can reach out for support for both you and your mom.
You are a wonderful daughter, doing a great job, with such a devastating diagnosis, and I know your mom knows how blessed she is to have you and your help.
I will be praying for you both, and that things start to turn around.
My mom is on keytruda every 3 weeks and Zometa (bone strengthening) every 6. So far we haven't had the schedule messed up, and unless there is some dire need to I will do everything in my power to assure it stays on schedule.
My mom has had a palliative care team since almost the beginning of treatment. They have done wonders to manage mostly all of the symptoms/ issues she has had. The unfortunate thing is with the cancer in her spine, plus a fracture and a surgery last year, she's almost always in pain. Pain meds can help take the edge off, but she had an adverse reaction to several types last year. So now we alternate meds with doctor approved CBD and cannabis products. I just wish there was more to help her but we've exhausted every option besides having her on fentanyl, which she refuses because of the bad reactions to other narcotics last year.
I feel like things would be much better and feel more positive if we weren't dealing with cancer in her bone/ bone marrow.
We are (almost) in the Cincinnati ohio area. Her treatment is through Trihealth cancer institute.
We are definitely hanging in and pushing through all that cancer throws our way. Today is officially the 1 year mark of the stage 4 diagnosis! So actually very thrilled to have made it this far. We honestly didn't think she would even see summer 2019 . What a crazy ride it has been!
Thank you for the kind words.
Prayers to you and all dealing with this nasty disease.
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