Caregiver Reflection
Author: Jackie Lovell
Email: [email protected]
My husband was diagnosed with prostate cancer at sixty years of age, after a routine medical check-up. He is now seventy- two. When he was initially diagnosed, he did not pursue any oncological treatment, opting for the naturopathic route. He made a radical change in his diet together with the use of natural supplements and treatments. He was doing very well for ten years. Then I noticed changes in his personality, weight loss, unsteadiness and he began forgetting a lot. As this was concerning for us, we took him to his general practitioner who knew his medical history.
The general practitioner ordered blood work- his PSA was 141. He was referred to a urologist who immediately recommended a bone scan which showed bony metastatic disease of the skull, spine, ribs and pelvis. My husband commenced a series of medication which included hormone treatment every three months. The PSA levels improved considerably, decreasing from 141 to 6.7. However, some symptoms such as confusion and loss of balance, continued. The urologist was in the process of referring us to for radiation treatment but before we could start this, my husband suffered two massive seizures.
He was seen in hospital where a CT brain scan showed a mass in the right frontal lobe. He was prescribed a range of medications and referred to the Caura Palliative Unit (CPU). The Palliative Unit began care but also referred him to the St. James Oncology Unit. He received radiation treatment but the oncologist hinted that no further treatment would be given and the rest was up to Almighty God.
However, after receiving treatment, overall he was doing well, even able to walk. Then, in late December 2018, he had another seizure, which again affected his ability to walk. The Palliative Unit recommended a second opinion, referring us to another oncologist. This second oncologist resumed the hormone treatment, increased the steroids and seizure medication. This helped tremendously as my husband was able to walk with assistance for quite some time. There were still challenges though, as he developed blood clots in his leg which required treatment with injections for six weeks.
In July 2019, the doctors tried to decrease the steroids but this resulted in his inability to walk altogether, which has persisted to this day. In November 2019, he suffered further seizures. He was treated for a bladder infection and he has been doing very well thus far.
When my husband was referred to the Caura Palliative Unit, it was very hard to accept because our impression was that this was a place where people go to die. At that time my husband was walking without assistance, he was eating and drinking as anyone else- I could not fathom the necessity for the referral. Fortunately, we were educated and I now believe that that was the best referral for my husband and myself. Caring for my husband prior to this was emotionally challenging as I watched him deteriorate from an independent person to the shell of a human being he has now become. I was fearful for my own mental state as I had periods of deep depression which I hid from him being his only caregiver with absolutely no medical knowledge. I was literally flying by the seat of my pants.
The service at the CPU is exceptional and tantamount to miraculous. All personnel are well trained, providing detailed explanations of what was happening. I had the impression that they really cared for their patients and us. The staff considered all aspects of care, including psychological and medical aspects. This improved my mental state tremendously as they counselled me on what to expect with the various stages of his illness and gently prepared me for what was to come. Even though my husband is diagnosed with stage 4 cancer, I believe he is still alive today because of the care he received at the Caura Palliative Care Unit.
I believe that being referred to the CPU has changed our lives for the better.
