A caregiver’s story
I was unwantedly thrown into the caregiver role when Kris was diagnosed with head and neck cancer in December 2010. Actually, this happened prior to diagnosis. I had to push him to see the GP when he had symptoms and I had to push our GP to eventually get Kris a CT and referral to an ENT.
When you get a cancer diagnosis, this affects the whole family. I often said to Kris, ” What happens to you , happens to me”. Not physically or treatment wise of course . Still, it happened to me too. I took leave of absence from my work to be there with him. To support him through the diagnosis process, treatments, and the beginning of recoveries.
I wanted to make this as easy as I could on Kris. To let him focus on himself. I tried to manage everything else. Coordinating appointments. Getting him to these appointments and treatments. Managing all medications and symptoms as they arose. Encouraging him with nutrition. Cajoling and coaxing him – to push through his boundaries. Doing my damndest to minimise/mitigate side effects. Trying my best to keep his spirits up. To still see the joy in life. Trying to ensure he knew he was much loved by his family and life was worth the brutality of treatment.
This was exhausting.
To be rediagnosed 10 months post radiation and chemo was just gutting. We had done all that our doctors asked of us. How could this be?
Once again, we leapt headfirst into the very, very unknown.
We, as human beings, are social creatures. We talk with others. We eat and drink together. Now we were told the only option of life was a total glossectomy and total laryngectomy. (Complete removal of the tongue and voice box.) Barbaric surgery and not surprisingly, Kris’s initial response was a flat no. I needed to reassure him that we could do this together. He would still be Kris, loved husband and father. His family loved him. Choosing life meant he would see his children into adulthood, into marriage, with grandchildren were a possibility.
On that drive home from Auckland to Whangarei, I contemplated driving at 100+kms an hour into a solid tree so that neither of us had to do this. But we had children. This was not the solution for us.
I am lucky that I work with an amazing crew who let me cry. I cried often at work. Everyday. I cried when alone in the car. I cried in the shower. But never in front of Kris. I had to be his rock.
I had to be his advocate through surgeries and recoveries too. Mistakes were made, processes not as thorough as they should have been.
Being his advocate has been the hardest job. Getting funding for HMEs for laryngectomees has taken years and was not approved until finally we could present our case and evidence to a higher funding authority. I’m really proud of this achievement. Also, that I could advise a Melbourne Laryngectomee on the evidence that was required, so that now Victorian larys too have access to HMEs.
Recently I have advocated for an alternative TEP speaking valve for Kris, after two years of constant valve changes. All coupled with constant aspiration.
It is my role as Caregiver to ensure Kris has the best QOL he can get. I have had to present the financial case; that this will save the DHBs money.
We are grateful that ATOS Medical has supported us and donated a valve to trial. The wonderful thing here, is that this too is now embedded in the Patient Pathway. Other laryngectomees having the same valve issues will now get access to this valve.
Caregiving is worth it. Our loved ones are worth the fight.