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Mr. H examined Les' abdomen telling Les the NG tube could come out and Les could have coffee, tea, milkshakes and then Wednesday progress to "sloppy foods." Les' face lit up like Christmas. Mr. H followed this up with "the histology report is back and the team has met to discuss it. The margins on either side of the tumor we removed are clear...and we consider this a curative re-section." Then he stood up, straight turned towards me and continued, "Mr. Biggs can go home tomorrow and recuperate. After a few weeks he will need to meet with Dr. J (the oncologist) to set up six months of chemotherapy treatments. After the chemotherapy has finished it will be necessary to have a CT scan every six months. After five years you are cured and an annual rectal exam is all that will be required."
"To reiterate then are his lymph nodes clear of cancer?" I requested.
Testily Mr. H. snapped, "no, I didn't say that. I said the margins around the tumor mass were clear and we consider this a curative re-section." He waited, the group of junior surgeons looking from Mr. H. to me expectantly. I glanced at Les who looked confused but barely shook his head, giving a signal not to go any further into it with the surgeon at this point.
The only reason additional cytotoxic therapy would be prescribed is because cancer was found in Les' lymph nodes. Why couldn't Mr. H. just come out and say this? Why dance around the news, hint at it, and wait to see if I would argue with him about it? I finished visiting with Les, and he was totally confused by the surgeon's pronouncement. "If it is a curative re-section, why do I need further treatment? Why?"
That night I sat perseverating on the surgeon's words until my stress level overwhelmed me. Anxiety squeezed my chest until I couldn't catch my breath, as I thought about how hard Les and I had to fight to get this surgery done; how rudely we were treated by Mr. H. and how quickly he dismissed Les' statement that he wanted no cytotoxic therapies, cutting Les off mid-sentence with the declaration, "What you want is irrelevant. We will give you the gold star standard in cancer treatment...if you elect not to have chemo/radiotherapy first then I would recommend surgery not be done as it would not be in the patient's best interest. Treatment before hand will shrink the tumor sufficiently so that surgery can proceed successfully; otherwise we could end up leaving some cancer behind."
We capitulated once, agreeing to five days of radiation therapy in order to ensure the surgeon proceeded with the surgery even though the treatment Les agreed to--as explained by the oncologist--did not shrink the tumor--it supposedly stopped the cancer from growing; we were told the treatment would be a good guarantee cancer would not return to the area. Now it seemed to me that we were right back to square one. How much harder would we have to fight this time--to proceed without allopathic cancer treatment in which we do not have any faith--in order to get Les' stoma reversed in six months time?
I thought about Les signing the Permission for Treatment form at Mt. Vernon Cancer Centre. This paperwork indicated second line cancers were possible as a result of the radiotherapy and we understood this could be the case. The form he signed the morning of the first treatment said he understood this treatment may not cure his cancer. Again, the morning of the surgery at Watford General, Les had to sign a form indicating this surgery was not necessarily a cure for his cancer.
Having radiotherapy increased Les' chance of cancer recurring by one third. Ct scans every six months will up the chances of cancer recurring yet again. Most people are not aware that they absorb three years worth of average x-rays every time they undergo a CT scan. For Les that would mean six years of standard x-ray absorption each year for five years!
Having chemotherapy would drive the odds up even further, if Les survived it.This surgery and the terrible lack of care directly afterwards have taken a toll on my husband...
I called our daughter in law Joanne is studying to be a nurse. I told her what Mr. H. said, crying as I spoke. "I cannot watch Les go through this Jo. I can't do it. Doctors keep telling us Les has to undergo these treatments to be cured but he signs paperwork prior to each one that says these treatments cause cancer and/or cannot be construed as a cure. My heart is broken. This has taken years off my life which I fought so hard against cancer to regain. Les is laying there in his hospital bed completely confused about the mixed message the surgeon gave him."
Joanne was livid! "Why would Mr. H. not tell you if there is cancer in Les' nodes? The way he handled this is causing anticipatory stress for both of you which neither of you need. If he isn't an oncologist and cannot say, then Mr. H. has no business telling you and Les what treatments are required. Now it's my turn to write a letter..."
I was back to sleeping two hours a night as I tossed and turned. I could not find the off button on my brain; I could not stop thinking about all we had gone through only to end up facing another stand off on top of it all.
The next morning Les texted me to call him immediately. His voice on the phone was filled with excitement.
"H. and his team came around this morning and he was feeling quite chatty. I knew you wanted to know about those glands so I remembered to ask Mr. H. if there was cancer in my nodes, was it? Yeah, so I did that and he said yes. He checked on the computer, and returned shortly saying cancer was found in two of the twelve nodes he removed. He asked me why I was so resistant to chemotherapy and I told him we don't believe in poisoning our bodies as a means of a cure. We believe there are other ways to fight cancer--and Jaq you won't believe what H. said! He said 'If you have the chemotherapy it will offer you a 15-20% chance of a cure. Make an appointment with Dr. J and hear what he was to say. Afterwards the choice is up to you and if you don't want the treatment, I will reverse your stoma in six months.'"
I broke down sobbing in relief. The battle between allopathic medicine and alternative treatment for Les is over. With joy in my heart Les told me he had been released to come home and Jojo was on her way to pick me up.
Last night I had to keep looking left towards Les' new recliner, to see him stretched out and resting comfortably. I still could not believe he was home! My daughter Sparky called as she has every day since this all began to check on me and "Da" as she calls Les. She joked about my developing 'Lovers neck.'
Today the district nurses came aboard and changed Les' dressing which they will do each day until his surgical wounds heal properly. Someone from Watford General also called.
"Hello, Mr. Biggs? Yes, I am calling to check on you and see how you are doing....yes, yes...splendid. I am also calling to apologize for the error on your discharge papers where it indicates you were deceased instead of discharged."
I'm happy to report Les is alive--all discharge paperwork to the contrary--and doing much better now. He rests in his recliner, takes care of his stoma and urinary bag, rests some more, has fresh juices, peppermint tea and our lovely daughter in law Ozlem's delicious homemade Turkish vegetable soup (recipe to follow in a future post).
While the simplest things knacker Les out, he can sleep now in peace, knowing he is safe in my care. After lunch today we walked up to the bridge at the lock and stood for five minutes watching fellow boaters pass below us, reveling in freedom. This cancer journey is not over yet, but our future already looks brighter...thanks again to family and friends on two continents for your help, support, encouragement, prayers and love.
