Growing apart from friends
My son is undergoing cancer treatment, which is rife with emotional ups and downs. I can't shake the constant fear that the tumors will return and spread, as his cancer often does. We have already had times where the outcome was looking poorly for him and anyone who has faced the reality of losing a child knows that awful and painful feeling welling within. I could use the support of my friends, but my sons treatment has really distanced me from them. They called the first month, then just stopped. They didn't send anything for his birthday, even though I have continued to send their children birthday presents. That hurt my feelings so much that I can't help feeling resentful towards them. I wish the biggest problem my family had would be something like their issues (like wanting an extra bathroom in their house). As you can tell, I am having a hard time moving past the anger phase in my sons diagnosis. A routine would really help me, but we can't even get to that point with his diagnosis. The treatment plan can change at the drop of a hat. Any suggestions on how to help me deal with my issues?
I have been really frustrated with
Re: Growing apart from friends
Hugs Hugs Hugs Hugs Hugs.
I don't really have any good advice, except I honestly feel now like I need my husband more than ever. Even my best friend from elementary school is now super distant. Her little sister had a baby and all of her free time is spent with her sister and the baby. I very much am stuck in the anger phase, on most days. We are looking at the possibility of M needed a kidney transplant and that in itself is completely overwhelming. I cannot imagine the uncertainty of having a child with cancer. Although no child is guaranteed anything, having that linger over your head constantly, must be grueling. I connected with a mom of a child who has similar issues as Peyton and we txt on a regular basis. We are going to meet up hopefully sometime in the next few months. I really can't 'click' with completely normal people anymore. If you want those friends back, from my experience you have to make ALL the effort and honestly, we don't have time for that!
I saw a psychologist 2 weeks ago and she said to help with the anger I need to learn better ways to de-stress. I forgot to tell her about the guilt, guess we'll save that for next time!
Thanks for the support. It has been extra hard because I am with my son in a different state where he is receiving treatment and my husband is back home working since his family leave ran out. I'm just feeling extra lonely. Talking on the phone is just not the same as being together with him.
I am sorry about your best friend becoming distant. That is exactly how I feel with my friends. My son will also need a transplant in the future. It is very overwhelming, like you know. When you said you can't really 'click' with normal people, you put my feelings into words. Even if my friends came around, I don't know if our friendship can ever be the same. My husband has done a much better job of moving past the anger to acceptance, but I just can't. What are you doing to de-stress? Normally, exercising would be my go-to, but I'm in my first trimester and feeling extra lazy.
I am so sorry about your sister's passing. I didn't have many friends to begin with, but I thought the ones that I had would be there for me through thick and thin. It would definitely help to find another mom to sit down with that is going through a similar thing. Therapy is a good recommendation.
We are considering an inpatient program for Peyton that is out of state and I would have to leave H and her little sister. It's nothing something we are taking lightly but you are doing the very best thing for your son.
Being in the hospital is overwhelmingly lonely in itself, all I ever do when we are in-patient is eat. It's the only thing to look forward too.
When you said that you didn't have many friends to start with that describes me too. I just had a couple of very close friends. I have always preferred to put more energy into a couple of friendships and have them be great than have a lot of not so super friends.
Either way, I pretty much having nothing now, and not getting to work and be around other adults pretty much seals the deal. No one even asks me if I want to do something because they assume I can't, which is probably true, but still.
The therapist told me reading is a good de-stresser because it gets you out of your own head. I don't really have time to read, it would cut into my sleep time and that would kind of be worse than getting sleep lol. She said other things are tv, listening to music, things that get your brain to stop spinning in itself, etc.
And ah! I just realized you said in your first trimester!!!! Congrats!! I would see if the hospital has someone you can talk too for more advice and support. I *thought* my husband was a lot better on the anger issue because he's always ignoring most things and never gets mad. But he was in a pissy mood in general the other day and I mentioned the mace procedure being an option for P if they didn't think she could go #2 normally and he FLIPPED. I mean he got so mad and said how unfair it was she can't go to the bathroom and yadayadayada. I think in general men are better at hiding how they are feeling. I told him it was kind of nice to see him angry about it and not so "everything will be ok," like he always is!
Your daughter is precious; what an adorable picture! My IRL friends are good people. I think you are right about that being their coping mechanism. I just wish they would think about how much just an email from them would mean to me. I feel like my husband and son (who is just over a year) are my only friends now. I am glad to have discovered this board. Facing the possibility of losing your child is so difficult. The thoughts creep up daily and cause so much grief. They are just so precious and undeserving of any pain. Hugs back at you.
What a difficult decision, especially when you have another little one at home. Being an in-patient is definitely depressing. When we are, I feel guilty for even stepping outside for a breath of fresh air while my little guy is confined to a room. And, yes, all I do is snack on vending machine fare out of boredom too!
Does Bumping count as reading? You ladies are certainly making me feel less lonely.
Thanks for the well wishes. This pregnancy came as a surprise, albeit a good one. Sometimes I wonder if my husband is bottling his feelings in. I have so much anger over watching my son go through surgeries and chemo, that I figure my husband must be some kind of a saint to have accepted it all. He tells me that being angry doesn't help anything, which is true, but I just can't help myself.
Bumping might count as reading :-P lol it counts if it helps you feel better, that's all that matters. I doubt he is a saint, men are just..different. They don't tend to feel the need to BE so emotional but it doesn't mean it's not there, somewhere. They tend to verbalize less too, I think. Who knows, i'm surely not a psychologist lol.
Our youngest was not a planned pregnancy, we used fertility drugs for P and got her CP diagnosis the week before I found out I was pregnant. I struggled with the pregnancy up until 20 weeks when the pregnancy itself got complicated and then I had to struggle with not wanting the pregnancy plus possibly losing it. It was not an easy road. You are excited about it so that's a good start! Looking back it was a good thing I suppose since we probably would not have had any more bio children BUT I feel awful that M is having health problems too potentially worse than P's.
We can only do, what we can do.
You are right. We can only do what we can do is becoming my mantra. I do worry about my pregnancy because I cannot avoid being exposed to my sons sweat and bodily fluids while he is on chemo. I don't think we could handle any more heartbreak. Your family sounds so strong.
I usually just lurk on this board--my older DD has sensory issues and there's a ton of great information here--but I just had to respond to your post. I'm so sorry for everything you've been through. It must be heartbreaking to see your child go through so much. Last year there was an essay in the New Yorker about a family who lost their infant to cancer, and it was absolutely devastating to read.
I was wondering if you'd ever tried using Caringbridge (https://www.caringbridge.org/) to keep friends and family updated on everything that is going on with your son. A friend of mine used it when she was diagnosed with cancer 5 years ago. She would post journal entries and sometimes pictures with updates about what was going on with her treatment and recovery. It helped her feel connected to people, and it helped us have a better understanding of what she and her family were going through. And I think the act of writing the journal entries was therapeutic, too. She still sends occasional updates because, although she is now cancer-free, she has had some serious side-effects from her aggressive treatment.
Again, I'm so sorry. Have you talked to your husband about how you're feeling?
I can't imagine what you must be going through.
The only thing I can relate with is 5 years ago a friend of mine was hit by a car and it put him in a wheelchair. When he was in a coma in the hospital when we first heard the news the cards and flowers and letters and support - it poured in like crazy. And once he was home and actually aware of what was going on - his friends became busy with their lives again. It hurt them to see him struggle, so they quit keeping in contact. (I've always thought of it as it might make my day sad to visit for a few hours, but it'll make his whole week great). After 5 years, out of hundreds of people, two of us that are not family continue visit him. It's been the most heartbreaking thing of seeing him go through this, even more so than the last 5 years he's spent trying to get to walking again. His mother passed away from cancer after he was able to go home from months and months at the hospital, and she was his main support system. After she passed a few people came around for a couple weeks, but they all disappeared again.
I can't imagine if I was in your shoes and that was my kid - yet I still resent some of the people who walked out on my friend. Every time they complain on facebook about being bored I just feel like going off on them. When I visit they ask me how he's doing or tell him to say hi for them. Yet, he lives 15 minutes away and they refuse to call or visit him themselves. It breaks my heart that these people, on top of walking out of his life, try to act like they still care, when they don't even know him anymore. They knew who he was when we were in high school. They have no idea who he has become as an adult or how it's been learning to use a fork again. I would love to tell you to not resent your friends, but obviously, I completely understand resenting them.
I know what has been most helpful for his family, with everyone leaving, was to find new people to relate to. It's unfortunate that some of the old people in their life were not strong enough to stick around. And honestly, those who left are missing out on an awesome person who has come so far and is very inspiring. My friend's step dad (who is his caretaker now that his mother passed away) - found a new church group to join (not sure if church is your thing, but it's a free way to get to know new people if it is). He also found some support groups locally for families going through similar changes. At first he felt guilty about leaving his handicapped step son at home to help himself for a couple hours at a time. But, in the end, it made his relationship with his step son so much better because he gets that time for himself and that time to vent where people aren't judging him. He can talk about feeling angry or hurt or "why me" without anyone giving him dirty looks. And they get those couple hours apart a week. Obviously he has to pay someone else to stay with his step son when he leaves, but he's said it has been very worth it. Sometimes just hearing someone else talk about it, wither on a message board like this one, or in a room full of people, will help you with the things you are angry about. I know a disabled kid is not the same as a child going through the rollercoasters of cancer. But I hope you can find some parents near you going through a similar battle. Or even a penpal. They might be able to be more supportive friends for you right now than those that are not keeping in contact. They can at least understand some of what you are going through instead of being scared or intimidated by it. You don't want to spend the time you have with your beautiful son angry and hurt and resentful. I'm sure you guys would have better time together if you had someone to hear you out and make you feel happier. If you feel happier I'm sure he'll see it. Although your life long friends are missing out on some wonderful times with you and your son (which obviously with how his life is, happy memories with him are irreplaceable, and one day they may regret missing out on those), and I pity them for missing that, I am still sorry that you have to go through this. You have to deal with the hard and scary and sad times to get the happy memories. And those things make the happy memories happier. Maybe if you had some new people in your life who had some different values they would want to be there for the happy times too. I have no idea where you live or what groups you're already in - but asking the hospital and googling local support groups (or even counseling that specializes in this) sounds like it would be a huge help to you.
I hope for the best with you and your baby boy.