I am the spouse of a metastatic cancer patient, and am their only caregiver (aside from their medical team). We live in BC and have no family in the area, and very few friends. They have been living with a metastatic diagnosis now for about 3 ½ years, and is at the point where they sleep most of the day (12 - 16 hours), though their blood work is holding steady. They have lost so much weight, and are living a three week cycle of blood work, chemo, feeling beaten down, a “good” week, where they still sleep most of the time but feel better, then it all starts again. I have no experience to speak of with cancer, and have no real idea what I am doing or what to expect other than the obvious inevitable outcome. But how we get from here to there remains largely a mystery to me. My spouse has great access to groups where they discuss and share, but I am mostly left out of those conversations except in a very cursory way. I know my partner is dying, but I don't know much else about what that will look like between now and then.
I spend countless hours while they sleep, trying to figure out what my future looks like, and I haven't got a clue. I am a freelance person, so am able to devote most of my time to them at the moment, but will come out of this alone and underemployed. I am trying to formulate some sense of a plan, but it is all just vague guess work. And my best friend, partner, and advisor is understandably not very interested in discussing my plans for after their death. I feel like I am sitting in limbo wishing they will be here for a long time to come, while also completely stuck. We have been together just about 30 years, and have always been each other's support with very few other close friends, and this diagnosis has brought us even closer than ever before. But last night I was talking with a friend I haven't seen in a long time, and as he asked how things are with me, with us, I had to admit I have no idea, and am just soldiering on each day alone. I told him that my plan so far is to simply keep this up every day until I am left alone, and then likely completely come off the rails. Of course I recognize that is not a great plan.
I would really like to find a group of people who hold a regular video group chat, where I can get comfortable, ask some questions, and eventually allow some of my anger and fear to find a voice. Can anyone help me find a group like that? I would much prefer that over a written chat forum. Even as I write this I am very conscious of, and afraid that my spouse will see this and recognize me in my words, and it will bring them pain and grief. So somewhere less public is very important to me. I have looked, but groups like that do not seem to be easy to find.
Thanks for listening, and thanks for your help if you can help me find a support group like the one I described.
MJA welcome from BC ! So glad you reached out to us. I am sorry to hear of the diagnosis, of your wife…..and also, how challenging it is, all, for you too……caregivers are Unsung Heroes as well……We are all here, to listen and share and support one another.
I will do some digging around…and try to find you a support group, as you requested, that is “live”….virtual…..yes it is better than online…..more human faces to see and share….
Feel our welcome with open arms!
#Caregiving #Breast Cancer for Wife
Hi MJA, I am sorry for what brings you here, and wanted to share a resource with you. The Canadian Cancer Society has a Peer Match Program to help find others to share with. Here is the link and info on how to join: https://cancer.ca/en/about-us/stories/2020/how-a-phone-call-provided-hope-to-this-couple-faced-with-cancer
***Update: The Peer Match Program no longer exists, and redirects you to CancerConnection. I apologize, as I did not realize this when I first posted.
Another suggestion is to check with the social workers where your spouse is being treated to see if any groups exist at the hospital or near by in the community or online.
I truly hope you can find that connection, and suggest you keep us here as a resource for yourself as well.
@MJA welcome and so sorry for what you are going through. It's so hard to be a sole caregiver of a loved one without any outside help, or no one turn to. Anticipatory grief sucks, and you need support and good communication with your partner. I'm glad your partner has has a support group but perhaps you and your partner can go to counseling together if they are willing. You both need to have open communication and get both your feelings out and be honest with each other. The oncology social worker at her cancer center is a fabulous resource. I have heard good things about Wellspring too and believe they have caregiver support groups. I'm so sorry you feel you have to hide your feelings from your partner. I'm concerned about your partner sleeping all day and losing too much weight. That should probably be addressed with her health care team. The dietitian at the cancer center can help get some calories into your partner so she doesnt lose too much weight. Is the sleeping a side effect of tbe treatment, or something else, such as depression? You mentioned your partner feels beaten down, so there might be some sort of depression going on with her. As well, leaving you out of things, could it be your partner wants to protect you? So many things here that need to be addressed. I hope some sort of joint counseling can bring everything out in the open and discussed honestly. Your family doctor may also be a good resource, plus perhaps a religious leader in tbe community can help too? No one knows what the future holds ,although we do need to be prepared. Do you know your partner's wishes? How do you want to spend this time you have left with your partner? Making memories, having chats , communicating and having nice things to look back on? You also mentioned you will end up coming out alone and underemployed. Perhaps seeking legal advice too might be advisable to formulate a plan. You do need to care for yourself too and find your voice too. You have a lot to deal with but you dont have to do it alone. You may also want to call the cancer info line at 1888 939 3333 who can also find a support group in your area. I'm so sorry for all you are going through. We will support you, listen, offer advice and resources where we can. You aren't alone. Swing back and let us know how you and your partner are doing.
At a cancer centre
- Patient and Family Counselling Services at a BC Cancer, Cancer Centre
- Support programs - at a BC Cancer, Cancer Centre (go to your Cancer Centre, Support Programs calendar)
In the community
- Cancer Chat Canada online support group for caregivers
- Family Caregivers support groups list for BC communities and Support line at 1-877-520-3267
@MJA - many of us here have felt the same way. Unsure what the future holds and taking it one day or step at a time. Sometimes it is the only thing we can do….
These groups below are online with zoom I believe and just for caregivers with other caregivers. So many people tell a similar story here so doubt if anyone would recognize you.
I have not used these groups but they are well known in the community and many people have mentioned how helpful their groups are. You will see 3 different ones for caregivers to choose from or use them all!
May you find some peace with joining them. We are also here to walk with you.
@MJA you poured a lot out in your post, much of which I can relate to. It’s obvious that you know the importance of getting some emotional support so you can carry on in your caregiver role but also so you can look to a future point when that role is no more. Hopefully the suggestions above lead to a good fit for you. Don’t stop looking and asking around until you find what you need.
Having said that, although a written chat forum like this isn’t going to work for you, you may want to search through some of the posts and read what other caregivers have shared. Maybe you already have? There are some great insights and coping strategies that could lighten your burden a little.
As caregivers we try to make our loved one’s lives a little easier each day and even if we have the best and most open communication with our partners, we’re still left with fear and uncertainty and sometimes an inexplicable void where we just don’t know where things are at. I wish you peace during these hardest days.
I have no idea, and am just soldiering on each day alone. I told him that my plan so far is to simply keep this up every day until I am left alone, and then likely completely come off the rails
First of all, I want to tell you that it is just fine to soldier on each day. Ideally, though, it is easier to do when you have help. Others have offered some resources to get you help with soldiering on. I’m going to add that you might want to find a grief support group through your local church. Your local library’s information desk might also have some options.
I can feel the underlying despair in your comment “until I am left alone”. Personally, I didn’t think about it, but clearly you are. On the surface, you sound a little bit numb about it, but like I said, I feel your underlying despair, and I’m sorry you’re experiencing that.
“Coming completely off the rails” can happen, whether we have supports in place or not. The good news is that we get through it: somehow, we manage to find a crane, whether it’s a friend, a health care provider or a relative, who has enough power to put enough cars back on the rails that we can move forward once again. But, there is that one car that can’t be re-railed.
Sometimes, it’s OK to not have a plan - to just “roll” with things. You probably already know that there are times when plans can’t be implemented anyway. That actually happened to me after dad died, and the people here were really helpful in getting me through that. You are so fortunate to have the flexibility to be there for your partner. I do some free lance writing, too, and I know how hard it can be to focus when you’re going through this. Perhaps writing about your own situation - whether through a journal or the blog here on Cancer Connection - might help you sort some thoughts out, too.
@MJA, hello. I am new to this website/group and initially joined to gain information about treatment and experiences of other thymoma patients and caregivers out there. More of a clinical need, I guess. However it is apparent I need so much more. Reading your post I felt so many emotions-fear, sympathy, but mostly I read the words I have yet to admit to myself. Our situations are not the same, however they seem to parallel in so many ways. I would be willing to converse with you and anyone else who needs to vent, discuss, share and hug (virtually) in the hopes of helping each other…
A lot of folks in BC find Inspire Health to be useful. They have a monthly zoom based workshop for caregivers (they call them support) that I have heard good things about.
I'm trying to get BC Cancer to get a zoom based caregivers/support group going but I don't think they have yet. Their social workers are available for a one on one consultation and they may have some resources that I'm not aware of.
@MJA I'm in NB and looking for a support group too. Husband (44) has terminal colorectal cancer and in the last months of life; two kids (15, 16) and two dogs.
It's been 3.5 years of this marathon and all the anticipatory grief won't make the loss any easier. I'm exhausted, but still need to keep swimming. I'm not comfortable doing local support groups so hoping there is a private support group too.
@KMitts This resonated with me, in part because we are both in NB, and because of the age of your husband and kids on diagnosis. My husband was 42 when he was diagnosed with stage 3 colorectal cancer in 2020, and at the time our kids were 16 and 18. We have been fortunate so far in that aggressive treatment (radiation, surgery and chemo) seems to have gotten it all and so here things have differed from your scenario, although I am still very anxious about it returning. But I found it was really helpful to be able to find another caregiver in the same situation as me, through this forum. And we communicated by email a lot, outside of the forum. Having that someone I could share everything with made such a difference to me, as I found I couldn't discuss my fears with family and certainly not my spouse, as I was trying to be strong for them. It is a LOT to deal with, and in your case knowing what is coming is terribly sad and tragic. If you can get counselling, this may help more than you think. It could also be useful to find a way to have counselling with your husband and kids, or to ensure they have someone else to talk you that isn't you (not that you shouldn't talk, but they might need to vent to a stranger too). While you are going through this alone, there others on this forum going through similar things that can understand a least a little about what you are experiencing and so I hope that can provide some comfort. Please take care of yourself.
Have you tried the community services locator on the CCS website? If you put in your town or postal code, it should provide some places in your area that can offer support.
In Ontario, there is a caregiver’s organization. There might be one in NB, but even if there isn’t, the Ontario site might have some suggestions of places in ON that you could use to find counterparts in your province.
Your local cancer centre should be able to connect you and your other family members to counselling services. And, if your husband’s in palliative care, his health team might be able to offer you some supports.
My best friend lost her son to colon cancer when he was about your husband’s age, so your story hits a little close to home. One of the hardest things for me about being here is seeing the rise in the number of younger adults (late 30s, early 40s) being diagnosed with colon cancer.