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July 21, 2012 at 2:43 am #20503
I know this is completly selfish and I am not the one diagnosed with cancer, but how can I be strong. Strong for my husband, strong for my four kids when Im scared of whats happening to my husband. He is getting ready to have second surgery to remove rest of lymph nodes on right groin and start interferon. This just really sucks. How am I going to help him when inside i can barely breath and so scarec for him and the effects that is going to do to my children.July 21, 2012 at 4:50 am #55620abdormaParticipant Hi janibraskas,
Welcome to this forum where it is quite okay to say you are so scared you can hardly breathe. But then do breathe!
My husband was diagnosed in Feb 2011 with Stage IIIC and has since had three spots where the dangblammed melanoma metasicized (two in Jan 2012 and one in May 2012). He has had surgery for all three including the removal of the node on his lung which was a big surgery and which took a long time to recover from. We do not have children but I can still empathasize with you that it is so very frightening to know how this disease will affect your family life.
My advice would be: 1) Knowledge is powerful. Learn as much as you can about melanoma and the possible treatments available to your husband. There is so much happening in the treatment of melanoma right now that it is hard to keep up but the upside of that is there are many more options available to Stage III melanoma patients then there were even two years ago. I will leave to others to discuss the pro’s and cons of interferon but you should really take some time and investigate all options before deciding on interferon as his treatment choice. If you visit this forum under the Stage III section, there have been several discussions about the pros and cons of interferon with people who have taken it offering accounts of their experiences. They also talk about recovering from the groin surgery, drains, etc. 2) Talk to your husband about his disease and how he feels about it and how you feel about it. Acknowledging to each other that this is possibly a fatal disease opens up the conversation for other things that need to be discussed —- finances, decisions about your children, etc. Knowing how each other feels about all of this takes some of the stress out. 3) Talk to your friends and your family about how you feel. They will support you as you go through this. 4) Read Catherine’s contribution on this forum in the last 24 hours about what caregivers need to do for themselves.
I am reading what I just wrote and it sounds sort of smug. I don’t mean it to be. Like just do these things and all will be well. That isn’t really the case at all, but I have found doing the things I mentioned helped me be less scared of the future and have allowed my husband and I to make decisions about how we are spending the time when my husband is well enough to truly enjoy our life. The good side of a melanoma diagnosis (if there is one
🙄) is it does force you to really live your life and not waste your time doing things that you really don’t value (with four kids there are likely lots of activities you don’t value but have to keep doing or they will be hungry and without clean clothes).
Hang in there because this is certainly a roller coaster ride. It is always okay to “dump” here because there are lots of others in your shoes who understand. And read the forum on Stage III and you will find LOTS of people who have survived this darn disease.
annJuly 21, 2012 at 12:19 pm #55621lunchladyParticipant
I agree with Ann. My husband is stage III (diagnosed April 2010) and we also have 4 children at home. I have at times allowed this disease to consume me also. It is hard to not think about what may happen next. I don’t have any answers. I am still searching for them myself. All I do know is that my faith carries me when I cannot stand on my own and is what gives me the strength to stand when I think I am doing it on my own.
LolaJuly 25, 2012 at 10:58 pm #55622bettinParticipant
my husband Peter was Stage IV when he was diagnosed last year, we had 2 children (3,5) at the time and unfortunately, he died in February this year.
I can only agree with what has been said. Peter said that in his opinion, I had the worse part because I had to cope with all his illness and then still continue afterwards…. while he could just stop. I’m not sure I agree with him but it IS tough and not selfish at all from you to find this difficult.
This might now sound totally contradictory but there are two things that helped me to get through this so far- 1. don’t waste any valuable energy on self-pity. We signed no contract saying that life would be fair- it isn’t. So asking ‘why us? why me?’ should rather be ‘why not us?’ Then move on and invest your energy in knowledge to get the best treatment for your husband and in keeping your family afloat 2. acknowledge your own feelings of hopelessness, fear and anger because they eat you up if you don’t.
I was lucky that I could do that with my husband- he would remind me when I was veering towards self-pity… and we could actually talk about our fears and worries. It does help to arrange for a testament and sort out finances etc- it gave us both a peace of mind and is now invaluable for me .
It’s true that also this reads like an easy smug recipe- which it isn’t. It took me quite some time to figure this out and since Peter’s diagnosis, I’ve nearly constantly felt like far too close to the edge, with all my energy bound to get through with nothing left for frills. So unfortunately, there is no easy way out, the only consolidation being that others have managed before and so will you.
Please don’t forget to take care of yourself as well.
BettinaJuly 26, 2012 at 4:13 pm #55623Catherine PooleKeymaster
Thank you Bettin, very wise words that are so helpful. I appreciate your return visits and think of you often and fondly.July 26, 2012 at 10:00 pm #55624 Wow, Thank you for the responses, I have really taken them to heart and have calmed down. It felt good to vent and let out my feelings, however I know that the panic that I was feeling does no good. Thanks Ann, for your input. It is exactly what I needed to read at that moment. The tools you gave me to educate myself was great advice. It has helped when at the doctors and able to discuss with my husband steps we want to take. His 2nd lynph node removal on right groin happened on Monday. He is in extreme pain. However we have good news that the pathology came back negative. That has given us so much hope. We go for his scans on Thursday of next week and back to oncologist to discuss his treatment. It is so hard to see him in pain. I think the hardest part for him is before his surgerys he never felt sick. Now, at 39 he is not able to do all he wants to do. Getting up to go to the bathroom is hard. The doctor warned us that it would be severly painful. He has an incision from his stomach to his thigh..I just do not think he anticipated how painful it would be. I am back to work today, the older kids are taking care of him. Its hard for them to see their dad this way, and hard for him to have them wait on him. This next little bit will be hard. We are hoping for a speedy recovery for him. We hope all will be good news in the next few weeks to come. Thank you so much for your insight. I am sorry that we all have to experience this. Love and prayer to you all.July 26, 2012 at 10:03 pm #55625 Thanks Bettina and Lola, Thinking of you and my heart goes out to you both. Although I am in the beginning stages, I know the pain that you have been through and my heart goes out to you..Lots of love your way…July 27, 2012 at 11:08 pm #55626DadZGirlParticipant Janibraskas,
I’m sorry you have to join this club, but glad you have found us here. My Dad is 74, he completed four infusions of Yervoy, then he had 11 lymph nodes removed in his Right groin area via incision from hip to inside of lower thigh. He is recovering. It is a slow recovery but one we celebrate daily. If your husband can do the Yervoy, maybe it would be for the best. There are so many stories here of success, and yes there is heartache too, but strength in our togetherness. It’s not going to be easy, but it is do-able. When I find myself falling apart I come here, sometimes I just need to read what is going on in someone else’s situation to make me realize mine is not so bad, or I find great advice, or put my tears to good use by grieving for someone else here. It’s a process for everyone. I don’t want to sound smug either. None of this is easy. Just remember it is do-able and you have friends here who really care about you and your family.
LauraAugust 16, 2012 at 8:30 pm #55627
I know even though Jarrod got a clean scan yesterday, our road ahead is not
over. Although positive happy news I know that every three months we will be
fearful of what now. We went to a lymphedema clinic yesterday and because his
lymph nodes have been removed he will have to deal with a swollen leg and go to
therapy… The doctor told us there is a tradeoff, with one cure comes
a symptom of another. His trade off now is a swollen painful leg, and fear that
complete lymphedema will set in. They told us to never get a scrap or cut on
your leg. Never get a mosquito bite. Etc… The pictures of lymphedema scared
us bad.. He is now wearing compression pants and will for the rest of his life I believe.
We are still waiting for his appointment for the dermatologist. He has had a total
naked body check, but it has been a while. We are just waiting for that next
appointment. I know you can relate -It seems now are days are just waiting for
the next result, and the next appointment. Not sure how his interferon
treatment will be for him, but everyday he is healing and getting better from his surgery.August 16, 2012 at 9:02 pm #55628Catherine PooleKeymaster
Jan, be sure to check out the Stage III forum for others who chose not to do interferon and the options they chose. How many nodes were positive? Is he going to a melanoma center of excellence?November 14, 2012 at 8:27 pm #55629 Sorry for the delay in getting back to you. Jarrod had complete lymph node removal on his right groin. He was down for about a month. He went on the IV interferon which was really hard on him. He is now doing the lower dose of shot 3 times a week. I have discussed other options with our doctor but he feels this is the best mode of treatment as he feels we caught this early enough. His leg is very sore and we worry about lymphedema, but have been to a wound care clinic and learned how to care for it before it the swelling gets too bad. We have had many hard times. He got a severe infection from his drain and was hospitalized. Since June our lives have been turned upside down. The days he feels good now we cherish, and those days are coming more frequently. At times I wonder why we put him through the shots when there is not much benefited noted from the interferon. However, we do not feel comfortable with doing nothing. I appreciate this website so much as when he was first diagnosed I devoured as much information as I could from it. Life does go on, we have four kids, work and financial obligations. We keep pushing ourselves every day. I work full time and Jarrod is now back to work full time. My heart grieves for those that have been through so much more and have experienced what we are going through. It is not an easy battle. Prayers to you all.November 15, 2012 at 1:18 am #55630AnonymousGuest Jan:
It warms my heart to see you and your husband working together to get past this disease and get on with your life as a family. It’s hard. But you guys are doing great. There’s nothing that you two can’t accomplish.
JeffNovember 15, 2012 at 2:46 am #55631denisem0725Participant
I am sorry to hear what you and your family are going through. This forum is truly a great place. I have found it so helpful as far as having questions answered, the people are all wonderful. I also have to say that connecting with others who understand what I am going through has been the most helpful thing I have found while fighting this horrible monster called melanoma. I cant imagine what you are going through with not only your own feelings but dealing with the feelings your children must be having as well. My heart goes out to you. I am taking care of my grandmother who has stage four melanoma. She has always been the most important person in my life and I love her more than anything in the world. I cant speak for others, but for myself I don’t think it ever gets easier. You just adapt and adjust. Dealing with this has changed me, I look at all aspects of life differently. The things I valued before are not so important. I do believe the changes have been for the better. I am rambling, just know that every cloud does indeed have a silver lining. I hope that you and your family are able to adjust and find yours! Keep your head up, caring for a loved one in this situation can be so hard, use this forum as an outlet. It helps!
Sincerely,November 15, 2012 at 2:55 am #55632denisem0725Participant
Last post cut me off before I could type my name! Also, my grandmother also had lymphnodes removed from her groin. The lymphadema was not bad for her. I hope that will be the case for your husband as well. The worst part for her was dealing with the drains. The swelling in her leg lasted a couple of months. After that it would really only swell badly when she was on her legs to much. It was not something that really impaired her lifestyle though. She was seventy six years old when that was happening. I find it helpful to try to be positive. Sometimes it can be really hard to do that, but thinking the worst is going to happen all the time will really get in the way of enjoying what you have right now.November 15, 2012 at 3:53 pm #55633ELOVESE2Participant Hello Jan,
I, unfortunately am in Bettina’s boat my husband Elliot was diagnosed with Stage III and rapidly went to stage IV. He was diagnosed on December 1st 2011 at 35 years old and on August 17th 2012 at 36 he passed away only 8 months and 17 days after his diagnosis. I am still having a very difficult time with all of this and I still can’t help but ask why? Especially when our 7 year old is also having a tough time that her dad is no longer with us. My advice to you is to do all of the research you can in regards to treatment and try to choose the best for him. I know that the PD1 trails are very promising since Elliot’s Oncologist Dr. Pavlick is participating in the trials, she was planning on including Elliot in the trial but we just ran out of time.
As far as I have read and have been told by Elliot’s Oncologist Interferon is really not being used, well by her at the NYU cancer institute because the side effect does not outweigh the results. I wish you and your husband the best I will keep you both in my prayers as you are both going to need the strength to overcome this horrible and senseless disease.
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