Josephine

Death is at the end of everyone’s journey. I’ve already processed being terminal, all the emotions and feelings. I’m good. No one can understand a terminal ovarian CA125 diagnosis unless they are dealing with that themselves. There is no HPV cure. There is no magic over-the-counter remedy. I can’t eat or exercise this away. One of the most annoying things about this is the OC predators and scammers with tests. I must have at least 30 bots and scammers blocked. From selling me a cure in a bottle, RSO, and it’s only 49.99 to be tested and cured!! Lol. To random diets. To drink hydrogen peroxide. And to pray in moonlight, visit salt caves, chanting in groups. I call that BS “woo”. Woo isn’t going to cure a terminal exam case.

Part of the problem is books that need to be more factual. Chris Beat Cancer is a popular one. The guy had stage 2 or 3. The standard treatment was chemo to shrink tumours, then surgery. He did the chemo only. Skipped out on surgery and got really into woo. Then wrote a book claiming the woo cured his Ca125 disease. The chemo did that. One of the first things I did was “research” the highest-rated gynecologic HPV oncologist in the Midwest. That’s about all I’m qualified to research, lol. The good part about finding a good team is you can bring your questions there to them, not to Google. You get real answers from professionals in the field and are informed on all the latest data.

Beating OC

Diet and exercise can help with symptoms. However, they alone can’t and won’t change the outcome.

What’s important to me and my family is quality of life. I want to be able to enjoy what time I have left. It breaks my heart incredibly when terminally ill people get caught up in woo and believe that if they do certain things, they can live. They believe so much that they don’t deal with reality, don’t make their end-of-life arrangements, don’t spend quality time with loved ones, or even get to say goodbye. That would be a nightmare for me. I’ve made my end-of-life arrangements. Arranged for services.

Signed the do not revive. Do not force feed. Gave my partner medical power of attorney so he can take over if need be. I’ve been spending so much time with my family. Completely honest that this will likely be my last year. Making as many memories as I can. So much I’m doing to leave behind for my son. That’s my focus. Not searching online for different CA125 treatments. I’m so sorry to hear about your mom. It’s heartbreaking that everyone has someone in their family fighting or deceased from cancer. It is so widespread that it affects everyone on this planet.

With so many people fighting cancer or watching a loved one battle ovarian tumours, they all have a voice about HPV. That is where the confusion comes from. People assume all OC is the same. It’s not even close.

Example using my cancer type- Ovarian.

Top 3 Types of OC

  • EPITHELIAL- about 85%
  • GERM CELL- about 2%
  • STROMAL—about 1% They biopsy the CA125 tumour and examine it under a microscope for this information. After that are the subcategories.
  • High Grade
  • Low Grade
  • Clear Cell: There are more, but I remember these are the top ones. This doesn’t include rare types or borderline types. Genetic HPV testing is also a very important tool when making decisions on treatment. BRCA 1 and 2 genes are the ones that carry mutations with a high chance of becoming ovarian and breast cancer. Moderate chance of prostate cancer. The risks go up the more family history. Myself being at the end stage at 37. The doctor strongly advised my siblings to get screened immediately. 2 carry the gene; 1 already had a hysterectomy as a preventative measure, and the other will do the same. Both will have to undergo a high-risk gyno every 6 months.

It’s not always terminal. Stage 4 Ovarian disease, unfortunately, is. I had tumours the size of grapefruits at the time of diagnosis. They were so big that surgery wasn’t possible until chemo had shrunk them down. So many test reasons why early HPV detection is important; no, it’s vital to saving lives.

Coping with the diagnosis

I think the best thing you can do or say to someone like me. It is just supporting whatever they decide. I’ve decided I want to spend time with my loved ones and be able to die with dignity. The end-of-life pill. If you’ve ever watched a loved one die, you know how heart-wrenching, painful, and agonisingly awful it can be. I’ve been there at the end for many relatives with checkups. Some people want to be surrounded by family at the end, and I can respect that.

It’s not something I want, though. I refuse to put my partner and my son through that. I don’t want that to be how they last remembered me. Suppose I’m lucky enough to make it to the very end of the stage- the hospice because there is no test or treatment left stage. I plan on leaving this world on my terms, not the disease. I will fight as long as I can fight of course. But when it’s time to go, I want to go on my terms.

It’s my biggest fear is that this CA125 test request isn’t followed. I fear slowly dying in a room with family I likely won’t recognise. Getting weaker and more incoherent. Being scared. Being drugged up so my passing is easier on them.

Final message

My husband saw his wife, and my child saw his mother grow weaker and paler. Seeing me whither away. Seeing me scared and crying. Them being scared and crying and I can’t comfort them. They remember this haunting image of me. I can’t, I won’t do it. I believe my partner understands and respects my decision. He has stated he will back me 100% as long as I fight while there is still a fight. I can’t quit until it’s time.

My son. My sweet boy. About to turn 6 in November. He may get upset at me for taking my life. I plan on spending the days before solely with him and my partner. I will say as much as I can safely say. I’m leaving as much as I can for him. I will explain my CA125 and HPV life-ending decision in the journal I’m leaving for him. I would rather upset him with my choice than let him see me die. It’s just a body. We all have to leave our bodies one day.