The Colon Club

Hi, this is my first post here, but I have been reading for a while. I've been stage IV all along, but we were chasing cure. In March we moved to confirmed incurable. I have a four-year-old son and the sadness and despair about leaving him motherless is nearly all-consuming. I haven't been able to connect with any local young adult support groups. Does anyone here have any coping tips? I'm trying to stay hopeful, clinical trials and more chemo are on the table, but I'm finding it really difficult.

Welcome and hello!

I have twins aged 7 and stepkids 13 and 16.

I went through a phase of obsessing over dying and leaving the kids - literally could not stop thinking about it. Walked into my therapist’s office and ended up telling her about this toward the end of my session. She recommended a book called Journey of Souls.

I’ll start by saying I’ve never been into that kind of new age / spiritual stuff, but reading the book helped me to do a 180 in terms of how I thought about life and death.

I’m grossly oversimplifying but one of the tenants of the book is that we lead many lives and we choose each subsequent life based on what we needed to learn or how we needed to develop. And we get visibility into the key defining aspects of a life - which would mean for example that you decided to live a life where you would deal with cancer and possibly pass away at a young age. I don’t know why but it really helped me to think that this cancer didn’t just “happen” to me but I chose it for some reason, even knowing that it might take me sooner than I thought I would go.

By that same token, it would mean my kids chose their life with me.

That premise was a game changer for me, and put my focus squarely on life versus worrying about death. I definitely would encourage you to read it if it seems at all interesting. I read all the Amazon reviews and thought, no way could it really be “life changing” like people say. But for me it really was.

Hi Windswept,

I'm sorry to hear about your diagnosis. As an incurable Stage IV patient with 3 young children I was devastated and did patient counselling at my cancer center. I was after a while able to live in the moment and I try not to think about what will happen in the future. Sometimes I do and the sadness is overwhelming, but I've learned to manage it. I've had 2 and half years with my boys that have been amazing and I try to feel lucky for the time I've had with them.

The one thing I will add is that no matter how slim, there is always hope.

AT

Windswept wrote:Hi, this is my first post here, but I have been reading for a while. I've been stage IV all along, but we were chasing cure. In March we moved to confirmed incurable. I have a four-year-old son and the sadness and despair about leaving him motherless is nearly all-consuming. I haven't been able to connect with any local young adult support groups. Does anyone here have any coping tips? I'm trying to stay hopeful, clinical trials and more chemo are on the table, but I'm finding it really difficult.

One of the coping tips that I see the most across the spectrum when a parent of young children has a grim prognosis, is to write letters for
the child to receive on milestone occasions in the future. Remember in that movie "Stepmom", the mother made memory quilts for her children?

Long before my diagnosis and coming into this forum community, I had been in an online support team for a mum with a young child. She kept a blog which in recent months has been published as a book. This mum was very realistic about the stages in her child's life that she was going to be present for and what her husband and
their extended family would need her guidance on - down the track. Google "gracefulwomanwarrior".

Scrapbooking is another way of gathering memorabilia and stories that only you can tell.

It is heartbreaking that your life has been visited by this most unwelcome intruder - mother interrupted - cancer might take your body, it can never silence your voice.

Swinging chickens.

Thank you for your replies! Gina, I will absolutely check out that book. I am open to anything if it can help pull me back into the present.

I have been writing to my son for about a year, and I guess that does help me feel a little more in control, but I have to be in the right mindset to do it, otherwise it sends me spiraling. I like the idea of writing things for my husband/family too. I love making photobooks and have been setting aside more time for that. They bring me a lot of comfort.

I'm encouraged to read that you guys have been able to shift your thinking for the most part. Thanks for the reminder about hope, AT! I told my oncologist yesterday that I'm trying to have hope but feel like it is just denial, and he said there's nothing wrong with a little denial! I think he's right if it helps me live in the moment.

It is heartbreaking that your life has been visited by this most unwelcome intruder - mother interrupted - cancer might take your body, it can never silence your voice.

This is beautifully put. Thank you.

I have four small children. And the sadness really can be overwhelming at times. But I think that it's absolutely healthy to feel that way and scream and cry about it because it sucks. The thing is it's more exhausting to feel that way all the time and it's not healthy for anyone. There is joy and happiness even in times like this.

I have booked myself in for some therapy and I think I will be doing the same for my oldest kids too. I have also started writing a journal for them all, little stories about them and things they might want to ask me when they are older like their birth stories or stories about me. I think I will write them letters and cards for when they are older too. I also keep a box of their baby things up to date but I was doing that before anyway.

In some ways we are lucky we get the chance to do these things for our kids and we get to make positive memories with them, not everyone gets the chance.

Our kids were 5, 7, and 10 when my husband was diagnosed stage 4 in 2015. It was such a gut punch. We found out during an ER visit and I just remember looking at the doc, then my husband who was as white as sheet, and then the doc again. I said “he is 36. We have 3 kids. This can’t be right”. I remember going out into the hallway to call his parents. I called my girlfriend after who had my kids with her. I just broke down and told her I was going to be a widow in 6 months and how was I going to raise 3 boys into men without their dad. I am so thankful I have been wrong. We are coming up on 4 years. We have had some very close calls with infections, but he is an immense fighter. And I’m so thankful my boys get to see that about their dad.

Your son is too young for it right now, but please look into Camp Kesem for him in a few years (or tell a loved one). It is an amazing camp all over the country that provides a week of free camp for kids with a parent who has or has had cancer. It has been so uplifting for our boys.

I think the most amazing thing I have seen about our kids through the last few years is their resilience. And their ability to exude empathy for others. Your son has that too. It is an absolutely shitty deal you have been dealt, but just keep giving him you in the now. If you don’t beat this, he will have those memories.

Windswept wrote:Hi, this is my first post here, but I have been reading for a while. I've been stage IV all along, but we were chasing cure. In March we moved to confirmed incurable. I have a four-year-old son and the sadness and despair about leaving him motherless is nearly all-consuming. I haven't been able to connect with any local young adult support groups. Does anyone here have any coping tips? I'm trying to stay hopeful, clinical trials and more chemo are on the table, but I'm finding it really difficult.

My kids are 12 and 9 now, it was a gut punch getting diagnosed 4 years ago. We immediately put them into counseling and have a local non profit that helps deal with this issue. They see me on chemo, watch the erbitux turn me into a white walker and feel my absence while I have to stay home and recover while their lives go on. The one thing that helped me was to accept what is happenening, worry doesn’t help anyone, sucks to hear and say. Thank God my wife is a strong person.

When my husband was going through treatment (he was on chemo for the rest of his life), we made it a point to still have fun as a family. Our girls were 9, 8, 7 and we had our youngest the year he was diagnosed. When he was tired, we sang karaoke and jammed out at the house. When he was on maintenance chemo, we took little weekend trips here and there. Our key to not worrying was to live life to the fullest.

I don t have kids but I always wanted to. My heart was in being a mommy. My child has never been conceived. I won t even see my kid in Heaven. Cancer took it away from me.

Windswept wrote:Hi, this is my first post here, but I have been reading for a while. I've been stage IV all along, but we were chasing cure. In March we moved to confirmed incurable. I have a four-year-old son and the sadness and despair about leaving him motherless is nearly all-consuming. I haven't been able to connect with any local young adult support groups. Does anyone here have any coping tips? I'm trying to stay hopeful, clinical trials and more chemo are on the table, but I'm finding it really difficult.

My mother died when I was thirteen and when I was diagnosed I was devastated thinking my four kids might lose their mother as well. You never wish any pain on your children. Two years later my ex husband was diagnosed with stage IV medullary thyroid cancer. He died in September 2017. So, I watched my kids go through the experience of grief and this has made me so less afraid of dying. They will be fine not matter what happens. We are all equipped with the ability to grieve death. Why? Because people we love die. It’s a part of life. It’s expected. In our culture, we are largely shielded from it so grief seems to be rare. But humans throughout history have had to cope with the loss of parents, children, siblings, and extended family members because of all kinds of diseases and tragedies. We are born into this world equipped with all we need to handle all of these possible tragedies. One man during the 2004 Tsunami lost all of his family members and relatives. Every. Single. One. In one day. These types of losses were not rare or unusual in our distant history. Grief is the process of severing the emotional bond and accepting that it is broken. It hurts. But then it heals. The end stage of grief is when you feel joy at thinking of and remembering your loved one. It does stop hurting eventually. I can attest to that myself. But you never stop loving the person you lost or stop remembering them. I still think about my little brother who died when I was 7 and wonder what he would be doing now. Now all of my grandparents have passed away, both parents, and my ex husband. Death is a part of life. My friend’s mothers were dying and I actually felt a little relieved I wouldn’t have to go through that myself. I know you feel responsible for his well being, but he will be taken care of. And he will always know you loved him.

A word about the letters... one recipient of these said that getting one at every milestone or big event cast a shadow over them, like getting a birthday card from the deceased parent at a birthday party in front of all of the other kids. Just be mindful of the timing of the letters and the circumstances he will receive them, maybe give it to him the day after a big event in private so he has time to process it. Grieving is a process, and a child has to grieve every loss they miss with a parent, not just at the funeral, so these letters, though well intended, may end up being reminders of what he lost and remind him that you aren’t there and make him sad at a time he should be celebrating. But it gets better over time.

Very powerful post, PainInTheAss. Thank you...