And always able to help with a few words.. but I'm also adding that recently I had not factored in the trauma of what I went through BEFORE knowing what was wrong in my mouth, and the DURING of diagnosis & surgeries & waiting for healing & SO MUCH more.. (I did really well!) and after 5 yrs 5 months being farewelled as Alive No Evidence of Disease (ANED) and STILL I need 4-6 monthly checks on my upper prosthesis for LIFE ...& I LIVE with a leg that's been harvested of skin x 3, flesh x 1 & a bone x 1...
And just this week as I navigate 2025 after a really tough year starting after Dad's death late Feb 2024... I've been given an unofficial dx of BURNOUT...aka EMOTIONAL EXHAUSTION at age 75.
You can use my words
I actually don't use survivor but it's a term that's accepted around the cancer world. Let's not go there with the military ones!
Speaking as the spouse of a survivor: my husband is 12 years out now. We are so grateful that he lived…and we had NO IDEA how difficult it would be afterwards. The choking, the coughing, the loss of so many beloved foods, the struggle to maintain weight: some days it is such a heavy burden for him, and I feel so helpless. Maybe you can include some outside experts on family support?
Survivorship, it's something I do everyday by myself although my family are great and helped me though my treatment they now want to move on. I had my first jaw cancer diagnosis in 2013 when I was 59 had a mandibulectomy and radiotherapy. I then had more jaw cancer in 2019 and had a left maxillectomy and more radiotherapy. Finally ( and I do hope it is finally) I had more jaw cancer and had a right maxillectomy. I had a titanium bracket attached to implants into my cheek bones in 2023 and have dentures that attach to the bracket. It's a long history and I don't blame my family wanting to move on.You can't go on talking about it forever, people get fed up with that. I have had to adjust to so many changes, trismus, dry mouth, inability to chew, dribbling out of the side of my mouth. I can only eat puree. It is a daily challenge but life goes on and I think I have adjusted but it takes time. Life is different but rising to the challenges is part of survivorship. I am now 71 and still enjoy my life everyday and participate in lots of outside activities but have to think through how to cope with the eating and drinking issue when I go out.
Yes I am very conscious of not always mentioning my inability to swallow, eat, making a fuss over food constantly - it’s draining for me, let alone for others. Lyn this is such a huge amount of trauma you have endured. Let’s hope, as you say - this is the end of it for you. How do you manage with travel ? Accommodation where you can prepare your own food but even that is limiting isn't it.
And always able to help with a few words.. but I'm also adding that recently I had not factored in the trauma of what I went through BEFORE knowing what was wrong in my mouth, and the DURING of diagnosis & surgeries & waiting for healing & SO MUCH more.. (I did really well!) and after 5 yrs 5 months being farewelled as Alive No Evidence of Disease (ANED) and STILL I need 4-6 monthly checks on my upper prosthesis for LIFE ...& I LIVE with a leg that's been harvested of skin x 3, flesh x 1 & a bone x 1...
And just this week as I navigate 2025 after a really tough year starting after Dad's death late Feb 2024... I've been given an unofficial dx of BURNOUT...aka EMOTIONAL EXHAUSTION at age 75.
You can use my words
I actually don't use survivor but it's a term that's accepted around the cancer world. Let's not go there with the military ones!
Speaking as the spouse of a survivor: my husband is 12 years out now. We are so grateful that he lived…and we had NO IDEA how difficult it would be afterwards. The choking, the coughing, the loss of so many beloved foods, the struggle to maintain weight: some days it is such a heavy burden for him, and I feel so helpless. Maybe you can include some outside experts on family support?
Thanks for doing this.
Thanks for your thoughts Judy - Yes - good idea I’ll put some thought to that, care giver support and family support
Survivorship, it's something I do everyday by myself although my family are great and helped me though my treatment they now want to move on. I had my first jaw cancer diagnosis in 2013 when I was 59 had a mandibulectomy and radiotherapy. I then had more jaw cancer in 2019 and had a left maxillectomy and more radiotherapy. Finally ( and I do hope it is finally) I had more jaw cancer and had a right maxillectomy. I had a titanium bracket attached to implants into my cheek bones in 2023 and have dentures that attach to the bracket. It's a long history and I don't blame my family wanting to move on.You can't go on talking about it forever, people get fed up with that. I have had to adjust to so many changes, trismus, dry mouth, inability to chew, dribbling out of the side of my mouth. I can only eat puree. It is a daily challenge but life goes on and I think I have adjusted but it takes time. Life is different but rising to the challenges is part of survivorship. I am now 71 and still enjoy my life everyday and participate in lots of outside activities but have to think through how to cope with the eating and drinking issue when I go out.
Yes I am very conscious of not always mentioning my inability to swallow, eat, making a fuss over food constantly - it’s draining for me, let alone for others. Lyn this is such a huge amount of trauma you have endured. Let’s hope, as you say - this is the end of it for you. How do you manage with travel ? Accommodation where you can prepare your own food but even that is limiting isn't it.