Saturday, 14th December, 2019.
I woke up at 3:00 am. Mind you, I did go to bed at around 20:00, and woke up only once to nip out for a cigarette. So, overall, apart from one night during the past week, it has probably been the best night’s sleep, I have had. I have pain but not rolling in agony, in fact, I am feeling comfortable and restful.
An hour later, Patrick stirred and woke up. I starred up at him smiling, he stood and totally ignored me. I wondered if he was still actually and technically asleep. He went to the downstairs toilet; walked back in; picked up his mobile; sighed at the realization of the time and disappeared upstairs. I wanted to say ‘I love you’ but I didn’t. I felt numb, why didn’t I say something.
I sat thinking of nothing for a while. Totally blank. Then it dawned on me that I hadn’t researched about not knowing as to why the primary cancer had not been found. We did all discuss wondering which metastasis it could be but these gestures were wild guesses. Then, we thought, well hang on, if the metastasis is so bad on the lung and the brain, then, perhaps the primary cancer could be worse than the lung and brain. However, that left us even more puzzled because the pain, I have is in my chest, back and head.
So, I began an internet search.
Then, I found the Cancer Net, whereby, they explained about brain tumors;
They explained that;
Metastatic spread. A tumor that starts in the brain or spinal cord, if cancerous, rarely spreads to other parts of the body in adults, but may grow within the CNS, central nervous system. For that reason, with few exceptions, tests looking at the other organs of the body are typically not needed. A tumor that does spread to other parts of the brain or spinal cord is linked with a poorer prognosis.
So, from this finding, I presume my oncology staff had already ascertained that my brain is metastatic due to my metastasis having been found in other organs of my body, such as my lungs, as usually, the brain tumors do not spread beyond the brain. Whereas, my children and myself thought they weren’t preparing doing a biopsy on my brain due to the extensive tumors and also, because we thought there would be a danger involved as there is plenty of edema surrounding it. However, in the light of this article, I now know that the brain cannot be the primary cancer and so, I cannot wait to tell my children of this finding and now all I have to do is wait for the day to break through. I cannot wait to tell them.
But, still my question as to which is the primary cancer and as to why the professionals cannot find it had not been answered. So, I began my internet quest once again.
“They cannot find my primary cancer”
On the first page I found the top box, which had several questions and one that hooked my curiosity was
“How common is cancer of unknown primary?”
I clicked on the question written by the ‘Cancer Council’ and this answer appeared;
Cancer of unknown primary is a disease that has metastasized (spread) from another part of the body. The place where it began, also called the primary site, is unknown. These cases make up about 2% to 5% of cancers diagnosed in the United States. Thanks to better diagnostic tests, though, they are becoming less common.
Hence, I am of at least 2 people that I know of, from the Chesterfield cancer patient list who are part of this 2-5% statistic whose primary cancer is unknown. I had never heard of not knowing the primary cancer before. I just assumed that if you had cancer, you had it and if you were lucky you survived and if not it metastasized and your chances of survival were grim.
I went on to read the article and found that if they should not find the primary cancer because as it turns out from more google search, that some primary cancers can come, filtrate your lymph nodes and metastasized. Okay, I understand this but then I read that once the damage has been created, the primary cancer can actually disappear. Yet, I thought, because my lung and brain and God knows what else was so bad, that I imagined that they would relook at my CT and try and find another worse off metastatic cancer. You know gander around for the worst metastasis and pick that one, but it does not work that way because the information claims that the primary cancer can then totally leave your body, leaving no trace as to whom the perpetrator was.
However, I apparently do not need to panic as the ‘Cancer Council’ do express that they can still give you treatment without knowing the primary cancer, and on the ‘Cancer Research Uk’ website, it termed my predicament as a CUP.
Meaning it is a
‘Cancer of unknown primary (CUP)’
. And ‘Cancer Council’ explained that;
Treating cancer of unknown primary
When tests have been unable to find the primary cancer, a diagnosis of CUP is given. This is often a difficult time and it can be hard to accept that the primary site cannot be found. Some people may feel relieved that the tests are over and that the focus can now be on treatment options.
Your doctors will recommend treatment based on:
- what will give you the best outcome
- the location of the secondary cancer
- test results
- where in the body they suspect the cancer started
- your general health your preferences.
The most common treatment for CUP is chemotherapy. You may also have radiation therapy, hormone therapy, surgery or targeted therapy. Different types of treatment may be combined.
For many people, CUP is diagnosed at an advanced stage and treatment is unlikely to cure it. However, treatment may be able to control the cancer and improve your symptoms. It is possible that treatment may make you feel better and also help you live longer. This is called palliative treatment.
“I have found it complex to talk to people about my cancer. I can explain it, but they find it hard to understand. It does seem incomprehensible to have a cancer that has spread but no named starting point.” – Jane
My son came down getting ready for work and I told him of my findings and asked if I had any rights to complain of the unprofessional attitude towards my having to chase for the prescription for my steroids when we all feel so ill and shocked. He agreed, that I should not be chasing anyone, it is me who is unwell.
He went to work and suddenly something inside wakes up and screams because my anger has woken me up wanting to live but it feels like I am tied up in chains and unable to function as I perhaps should. I am seriously asking as to
‘What is going off?’
In half an hour, I will ring the hospital and trace or chase more my steroids to be prescribed. All this unprofessional attitude has left my family and myself feeling utterly despondent of any hope to survive that bit longer. I am so worn out that this news has drained every one of us, leaving us unable to know as to what we do. It is bad enough that we know that I will be having to say goodbye to them all and even worse to realize that one of my children has also had a life changing lifestyle due to our granddaughter having being diagnosed with type 1 diabetes at the same time as my terminal diagnosis. And knowing that I cannot be around to guide and love my children on their hardest path of their lives, really has me feeling ‘ANGRY’.
More of this day will be published in my last book “My Dying Legacy”