@pippin Hello……it is understandable to be worn out (and then some) after 10 months…..perhaps reach out to the hospital….seek the Oncology Social Worker…make appt -phone or in person? Great resources with them….and to talk too! both are vital…ask if there is some home care? respite care? PSW that comes daily? Any time slot, so you can just “breathe out”…..Again, at the hospital….is there a Patient Ombudsman? They can point you to local B.C. services, of help/support/home care…
Canadian Cancer Society….ask for Information Specialist….they can hopefully offer more ideas of help for you, in B.C.
Wishing you the best,
Thank you for the kind reply. BCCA is in Victoria an 1½ hours away and usually directs me to web site resources. After almost 4 years of treatment 35 radiation 2 chemo in 2019, 25 radiation in 2020 and then the assault of a tracheostomy that he didn't want which also included a g tube he's pretty angry. Locally we have home nursing that was once a week but I is now daily, social worker, palliative team as well as exceptional medical team at CDH hospital. I am thankful our daughter isn't working so that I can keep my small 1 person copy shop running for income. Just trying to see if other trached throat cancer individuals are out there and what their experiences have been.
Hello @pippin - sorry you have a need to find this forum but so glad you did.
While I don't have any experience with this type of cancer I was a caregiver for people with quadriplegia who had g-tubes for most of their lives and lived very well with them. They are quite easy to care for once you get used to them and the nutrion they supply is the best!
I am going to tag a few people that may be helpful for you to meet.
Hello, @pippin and welcome to this site---although it must be quite a strain for you to share your situation and carry on with your day.
@Trillium tagged me and I am glad she was on the ball to do so….this site is a sanity-saver and offers such good resources and people with whom to communicate. Being a long drive away from your Cancer Centre makes in-person meetings with the medical team very challenging. Covid complicates matters further. There may be a way to have online Zoom sessions…..even if they are group oriented. Have you used the toll-free Cancer Centre Hot Line phone yet? 1-888-939-3333. It is staffed with oncology personnel who can offer suggestions of peer groups to join; they listen to you and can also offer related resources for your husband's and your situation.
Caregiving for your husband is indeed exhausting yet so loving on your part. I am a 3-year survivor of basal tongue cancer…. I had radiation but declined chemo and fought successfully to refuse a g-tube. I was not eating food, or swallowing liquid due to enormous pain and blisters on my tongue and a swollen throat; I could not open my mouth more than1 cm…..and I tell you this only because I know how awful Head+Neck cancer is. My nutritionist was furious with me for refusing to have the tube inserted and for my refusal to swallow or chew any nutritional supplements. I was fortunate not to be a candidate for the tracheostomy, and I am blessed with all 4 mobile limbs. As a layperson, I am certainly not able to give opinions nor advice, yet in lieu of having more satisfying in-person visits with your oncology staff, I suggest you try links on this site such as: Publications, Forums (scroll down to Cancer Types, Head and Neck) and Groups, which offer like-minded cancer peers who discuss and want to hear your story. (Perhaps you have already tried these suggestions).
There is also the possibility of using the Cancer Medical Library online…. the toll-free number staff ought to be able to direct you to that resource as well. It is crucial to take time for YOU during this long ordeal. ….it is not selfish, nor should be guilt-ridden, nor avoidable!! Discuss with your daughter and have a notepad handy if your husband finds it easier to be involved that way…. you deserve and need support and help….and sleep!
And, I, too was in the print industry before computers placed me on the unemployed list. I was an Advertising Print Production Coordinator for large-sized corporations and Universities, so I dealt with copy shops, web and sheet-fed press operators, ink vendors, paper vendors, etc. I loved that career…but retired due to lack of work when I lived in the San Francisco, California Bay Area….I think copy shops or large-format advertising screen wraps or banners are the only thriving area of the print profession these days.
Please keep posting to share your situation, your frustrations, and your victories!