My experience as a cancer caregiver

I wanted to share a bit more about my experience with cancer in terms of being the caregiver.

Although technically I wasn't the patient and I didn't have the physical pain and chemo side effects, I do believe that the whole cancer journey is arguably harder for the other person, the caregiver.

That's of course not to take away at all from the experience of the patient. I can only imagine how hard it must be to have to deal with the idea that you might not have much longer left to live and not to mention all the awful physical effects. Ric had terrible nausea which was really difficult to deal with and I wouln’t wish that on anyone.

I can obviously only go off my experience, and my experience so far with cancer has been that of the caregiver, or family member.

I often remember this feeling of being completely useless or powerless in my ability to help Ric. There was absolutely nothing I could do to make it go away or to make his pain any lighter. I hated that. I wished so much that I could just wave a magic wand and take it all away, or I sometimes even wished I could swap places with him just so he would stop hurting.

I don’t think I’ll ever forget that moment when we were told it was cancer. It was so unexpected and just didn’t feel real. I guess from that point on our relationship changed slightly, I became his caregiver. That word might imply that I had to physically help him with things, but most of the time apart from feeling bad he was still able to do everything himself. So it was more of an emotional and administrative caregiver I guess. But it did mean that I was the one who was there with him through every side effect of treatment, all the times he couldn’t keep food down and rubbing his back while he threw up. I was there for every appointment to hear all the good news and all the bad. Our first appointment with the oncologist was awful and basically she told us to look into assisted suicide if Ric was interested! That was impossibly hard for me to hear, and one of the only times throughout our whole journey where I broke down in tears during one of our appointments. Ric had to have a colostomy surgery (to have a stoma and stoma bag put in place) and I was then in charge of all things admin for his stoma supplies. He had to have bags, and special paste and spray to help stick and unstick the bags. I was the one who kept track of the stock of everything he had and the one who ordered more when he needed it.

Of course I didn’t mind doing all this, but it is just to show one of the “tasks” of being the caregiver. I suppose because I couldn’t take away his physical pain, I wanted to do what I could to lighten the mental load.

I do think that my nature anyway is one to really care for others especially people who I love. So I feel I was quite well suited to be a caregiver, and often went out my way to make sure he was comfortable and had what he needed. When he came home from the hospital after his surgery I setup a little “positive corner” for him where I put some of our special stuffed animals we had collected as well as some notes that I got his friends and family to write for him. I got him some new comfy tracksuits and a nice fluffy blanket, a good water bottle and a few other things. Of course we had our moments where we would just let the tears flow and express all our worries and fears. But I will say that the majority of the time I tried to stay strong for him, and would often lift him up when he was having a down moment. He did say to me on several occasions that I was his rock through everything and that he couldn’t have done it without me. I appreciated hearing that.

Bear in mind that I was pregnant throughout this whole journey! So I wasn’t always feeling at my best either, especially the closer we got to little J’s due date. It was sometimes really hard to manage the normal pregnancy stresses and emotions combined with all the cancer stuff. It was such a strange mix of feeling happy about starting a family but also knowing that Ric probably wouldn’t be around much longer. It was hard. A mix of new life and death, the two big events of life happening at the same time.

I think however that having the pregnancy to deal with did sometimes give me something else to focus on. But it also worked the other way around and meant that I didn’t have to fully focus on the pregnancy (I didn’t really enjoy being pregnant) so actually even the cancer gave me something else to focus on aside from all the pregnancy stuff. I guess in a way it helped me to have both things happen at the same time, although it was hard.

I would say that one of the hardest things of being the caregiver was knowing that once he passed his pain would be gone, but that I would be the one left behind alone with a newborn. I hated the idea of being on my own and it was so heartbreaking that we knew our little J would have to grow up without his dad.

One part that I didn’t expect to hit me so hard was the physical transformations that Ric went through. Some of them really did take me time to get used to and almost in a way made me feel like he was a different person, it was quite strange and emotionally challenging. One of them was of course the hair loss. And I know this might sound quite vain, because of course when you love someone it’s not just about how they look. But when he eventually did shave his head, I hated it, like really hated it. He had always had such lovely hair and he just looked so different, it was really like it wasn’t Ric. Plus a big change that happened at the same time was that he got glasses. The chemo had affected his eye sight a bit so he got glasses which he then wore most of the time. I eventually came to love his glasses and thought they suited him really well, but at first it was really hard. It really didn’t feel like it was Ric anymore, it was pretty difficult for me and took me a good few days to get used to. It just felt like the cancer was really taking my Ric from me.

The other big thing was the extreme weight loss. Near the end when he couldn’t really eat the weight just started falling off and he looked so weak and frail. It was really hard to see him like that, and the worst part was that I then didn’t trust him to hold baby J because he just looked so unsteady on his feet and he hardly had any energy to even hold up a bottle to feed him. That was really really hard to see. Because he wanted to be a good dad and he was for the one month he was feeling ok after J was born, but then he just couldn’t do the simple things. The neuropathy stopped him being able to change diapers or fasten up baby clothes, the pain in his chest and stomach meant he couldn’t really let little J lie on his chest to fall asleep like he had been. And he couldn’t really walk around holding him anymore. It was so cruel that cancer took away his ability to be a dad.

One of the hardest things I had to do as a caregiver was make some of the big decisions. The most difficult for me was having to decide that he wouldn’t come home from the hospital near the end but that he would go into a hospice. I felt like I was betraying him because he just wanted to come home more than anything. But it seemed so overwhelming to think about him coming home in that state when we also had a newborn at home. So I had to go and visit a hospice and decide that he would be going there. That’s never something you think you’ll have to do for your 28 year old husband. I hated it, I felt so guilty putting him there. I know in the end it was the best decision but it just felt like I was deciding that this was the end for him.

He was in the hospice for a total of 11 days I think, and the rate at which he deteriorated was pretty insane. It was heartbreaking to watch him litterally fade away in front of my eyes.

I suppose I am weirdly grateful however that I was able to be with him at the very end and that it was just us two. It meant I think that he was able to slip away peacefully because he knew I was there. And I think that’s the best gift I could have given him and I feel like I was able to complete my role as caregiver, I was right there with him until the very end.

So I do stick to what I said about cancer being harder on the caregiver, because I had to watch him suffer and go through all that pain, I literally had to watch him die. And then I was left alone, with a brand new baby. I lost my husband, my best friend, my person. I was left to pick up the pieces and pick myself back up after everything that had happened all the while learning how to be a new mom. My heartbreak and pain didn’t end on that 18th of July, it kept on going and going and is ever present even though it’s much less loud now. I’m still living with the side effects of cancer every day because every day he’s not here with me, so my pain goes on. That’s why I think it’s harder for the caregiver, because it’s something we will live with our whole lives.

If you yourself reading this are a caregiver to a loved one with cancer, or any terminal illness, I send you a big hug and I hope that you have people around you to help and support you and that you remember to be kind to yourself.