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October 27, 2013 at 4:09 pm #21645Maureen038Participant
Hi to all! I have never posted on this caregiver page before. I have been dealing with my husband having stage 4 melanoma for a year. He has mets in his lungs. He just finished the ACT trial at NIH this summer and while he did very well, a few of his lung mets grew a few mm. He is now on the ipi/nivolumbab trial at Pittsburg where he will get his second dose of 3 mg of ipi and 1 mg of nivolumbab in a week. I have had depression and anxiety issues most of my adult life so this has been very challenging for me. I just found out two days ago I have shingles probably due to all of my stress. Does anyone have ideas on coping better with the unknown of this dreadful disease? Thanks for any help you can give me!!
MaureenOctober 27, 2013 at 4:36 pm #62862Catherine PooleKeymaster
We totally understand your predicament. Sorry to hear about the shingles, I had them once and think they really are something you catch from someone else, not stress related. But here are some tips that have helped others: twice a day try to meditate, there are many online mindful meditation guides, Jon Kabat-Zinn is the pioneer at Harvard who proved this really does reduce stress. Seek out a therapist to talk it over with, put that in the search (therapy) and you’ll come up with a contact number, otherwise ask at the hospital for therapists names. Take time for you, doing pleasurable things, get a massage, exercise aerobically if you can. Be sure to take Vitamin D supplements for your immune system. Stay connected with your community or find community to connect with. This can be a very isolating time which makes it worse! We’re here for you to vent whatever you’d like in this forum for caregivers. Please do..take care.October 27, 2013 at 5:24 pm #62863AnonymousGuest Maureen:
Sorry to hear about your husband. Seems like he has a fantastic caregiver though
and he’s in an awesome trial.
Yes, it’s rough on us to say the least. Sleep was my big issue. Waking up at 2-3 am worrying sucks…out loud.
Here are some things that I found provided gradual but steady relief from worry and depression:
1. Exercise. It can be anything. Jogging, walking, swimming, biking, weight training, gardening….or what ever gets you out and
moving about. Try for 3-5 times a week, rain, sleet or snow. Exercise releases the body’s own natural anti-depressants, mood lifters and pain killers. Mix it up too and it’s always wonderful to do it with someone or even just to be around people. Talk with your doctor first if you’re older and/or a newbie to exercise.
2. Talk about it and keep talking about it. Talking (and typing) it through helps to release what’s inside. A good friend, sibling, children (especially them if they’re adults) ministers/priests, and professionals. If you have someone you can cry in front of, that’s solid gold. Then, of course, POST HERE OFTEN and don’t hold back. Speaking of not holding back, and this may be risky and controversial for some, let out any anger you may have with God. Scream and shout at Him. It may seem strange but in the process of letting out your anger with Him, you’re engaging in conversation with Him, asking profound questions and He delights in that.
3. Seek professional help. This is related to 2, of course but a good therapist can be invaluable, especially one that is skilled at EMDR (google it, a technique used extensively by the Defense Department for post traumatic stress syndrome, which believe it or not, you’re most likely experiencing). Doctors can also prescribe anti-depressant/anxiety medication if necessary ( a low does of Zanax every now and then would give me a decent nights sleep). And you may consider grief counseling as well. I grieved the loss of the simple life I had prior to my wife’s diagnosis. I knew I couldn’t go back to that previous, simple state of mind and that was a loss.
4. Meditation and prayer. Catherine has put us on to “Mindfulness Meditation” and what a blessing it is. It effectively focuses your mind and thoughts away from worry and rumination. It may help your sleep too. I found prayer a very personal form of meditation as well.
5. Engage in your hobbies if you have any and if you can. This can be hard with depression anchoring you down with lack of interest but even a few minutes can ease the worry a bit.
6. Treat yourself well. Get more sleep (Yeah right, MUCH easier said than done but doing the stuff above helps). Eat well (another “Yeah, right”). And don’t beat yourself up (the third “yeah, right”).
Maureen, this is such a difficult time and there may seem to be no let up in the worry and depression you’re feeling but you’ll find moments when it subsides. I learned to take advantage of those moments to do the above stuff, basically taking care of ME. When I did that, I found those moments gradually got longer and more frequent and, importantly, I became a better caregiver.
I hope this helps.
You’ll do well.
With my prayers.
JeffOctober 27, 2013 at 8:42 pm #62864Maureen038Participant
Thank you Catherine and Jeff for so many great ideas. I will try to start with a few things first. Catherine, the doctor told me that shingles can be caused from a lot of stress. I will look up the mediation tapes you suggested Catherine.I do agree that exercise and mediation helps, but I need to make it more consistent. Jeff, I thought that was very interesting about PTSD. I know that each time we are at a different hospital or doctors office I feel like I have a lot of flashbacks to previous places. I think starting the trial at Pittsburg has put my anxiety very high even though its a great trial. The communication isn’t as good and it seems disorganized and very crowded. His first treatment we were there from 9-6. I hope the second treatment doesn’t take as long. I also agree with you Jeff that there is definite grieving of losing what a normal life is and not knowing how much time we have together. It’s definitely a challenge. I so appreciate both of you giving me advice and your compassion and understanding!!
MaureenOctober 29, 2013 at 5:57 pm #62865Webbie73Participant
Thank you for a wonderful answer. It was timely advice for me. I originally came to this forum as a melanoma patient. Now I find myself being a care taker to my husband who has an incurable form of non Hodgkin lymphoma. I have faced the “c” word myself 5 times and after being on both sides I can honestly say being the care taker is by far the hardest. I have not handled my emotions very well and constantly worry but just this weekend I took a small step forward. Reading your tips was like a pat on the back for me. It is still hard but at least I know I can continue to move forward even if I fall back at times. By the way, I found handling the medical and physical part of caring for my husband is the easy part, it is the darn emotions that trip me up. Thank you again
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