HPV Testimonies
The human papillomavirus (HPV) and the cancers it causes can devastate people’s lives. Josef Mombers – Life is Still Beautiful: Surviving HPV-Related Penile Cancer. Josef Mombers, from Belgium, was diagnosed with it. Related cancer diagnosis of the penis three years ago, when he was 57 years of age. It is an aggressive form of the disease that requires radical therapy and typically has a poor prognosis.
The next morning, the urologist, who I know well, needed less than five minutes to tell me I had cancer. He immediately arranged a CT scan that confirmed I had metastases in the groin. He also arranged an appointment at a renowned specialist centre for the next day.
Yet I still ignored the life-threatening situation I found myself in
The next day at the centre, a biopsy was taken and I was given a thorough explanation of what was coming next in terms of therapies, as well as my prognosis. They told me I had a 35% chance of being alive in five years.
In other words, the changes of not making it to five years was double that for being alive by then. Horrible.
I drove home and did possibly the hardest thing I have ever done: My wife and I went to tell my children about the verdict. I remember saying that the worst for me was my grandson, who was five months old at the time, would maybe never have any memories of me.
Less than two weeks later, I went into hospital for surgery. A procedure to remove some or all of the penis known as a penectomy. I was calm at first but a wave of panic came over me that evening. An experienced nurse took time to talk to me, for which I am still very grateful.
In the recovery room after the surgery, they told me they had been able to remove everything, which was a hopeful sign. The growth of the tumour afterwards on the CT scan was less than expected, which also gave me some hope.
The Grieving Process
Facing a diagnosis of aggressive cancer, you pass through the classical stages of grief: before the diagnosis, denial; then, shock and anger, “it’s unfair to have cancer”; bargaining, “I’ll do anything it takes”; depression, “I’ve run out of luck”; acceptance; and finally, hope.
The loss I was grieving was that of a ‘normal’ healthy life, with no major adversities.
It was also a shock to have to alter my position in life. I went from someone who took care of others, taking things into his own hands to make things better. To someone others had to take care of, who had to hand himself over to trained and skilled professionals.
During the six months of therapy, I learned that others were willing to take care of me. When I told one of my colleagues how many people seemed to really care, she said: “You are now reaping what you have sown your whole life.”
A HPV results at a relatively young age makes you think about the end of your life. Of course we all think about that from time to time, but not ‘for real’. And that’s a good thing. Otherwise life would be unbearable.
Some people seem to need the ‘great shock’ of a cancer diagnosis to live their lives less superficially. I didn’t experience that. I think we didn’t have a ‘superficial’ life beforehand, and I always thought over things. And I always tried to be aware of how good our lives were, and how grateful we should be for that.
A Huge Impact
The impact of receiving a HPV diagnosis with a poor prognosis and the subsequent therapies cannot be overstated. There are several aspects to this.
Emotional
Initially, there is a real fear of not making it. You think a lot about things you believe you are experiencing for the last time: Christmas with the family; birthday parties; seeing the sea; hearing the birds in springtime, etc.
To give you an example, the wedding of one of my daughters was planned for about seven months after my HPV diagnosis. I went with my wife to look for a dress, and when I saw her all dressed up for our daughter’s wedding, I became very emotional, thinking this would be the last time I would see her wearing it.
Sexual impact
It will not be a surprise to learn that having a penectomy has an impact on the sexual life of a couple. Not only for the patient but even more so for his partner.
Whereas sex should, ideally, be a mix of physicality and intimacy. There is a clear shift towards intimacy after such an operation. It does not mean there is no longer any physical lovemaking, but it changes, and both partners have to learn from scratch how to deal with the new situation.
The role of the partner is of utmost importance, not only in accepting the situation but also in helping the patient accept his ‘new body’. ‘For better or for worse’ are easy to say at a wedding, but if your partner lives by them, you are blessed.
Do I miss it? Do we miss it? Of course, but no matter how much we liked our ‘normal’ sex life, we are happy with what is left. It may seem very little to other people, but it means a lot to us.