(Caring for Cancer, Part 2)
Read Part 1 “How our Cancer Story Began” HERE
I never realized just how excruciating waiting could be.
We had already waited an agonising two weeks on the query-cancer pathway for the Consultant Oncologist appointment, and we had left with nothing more than the promise of more waiting. We had naively believed that we would walk out of that appointment with at least a possible diagnosis – it was a query-cancer after all, surely that was urgent? Admittedly the oncologist had stated that my husband did not have cancer, and it was only my absolute confidence in my research, plus a little tenacity, that had secured a follow-up appointment. But, still we had to wait.
We waited for the phone call. We waited with no answers, no plan, no control and no idea when we might hear. By now my husband was in chronic pain and, understandably, clung to the possibility that his symptoms were caused by an infection – after all, that was what the Oncologist had said.
My reality was different.
I had read the research papers. I had assimilated the data presented to me. I was convinced he had cancer, probably metastasized. I knew that with every day that passed his chances of a good prognosis reduced. But all we could do was wait.
My sleepless nights continued – full of anxiety, despair, silent tears and newborn comfort. In a strange way these quiet, long nights offered some relief – a private space to release emotions pent-up during the day.
In the day time anxiety, dread and fear plagued me constantly, but some semblance of normality had to continue. I had a three month old to nurse, feed and change, and a perceptive and inquisitive toddler that, quite rightly, demanded my attention. I had to run the house; do the food shopping, plan dinner, put the washing on, tidy up. I had to interact with other people – talk with neighbours, friends, the postman. I had to go through the motions of normal life. I had to keep it all in.
Staying in control of my emotions was hardest with my son. I struggled to be the happy, playful and present Mummy he knew. I struggled because the real me was fracturing and crumbling inside – unraveling in panic that we would be left alone because a diagnosis would come too late. If he caught me off guard, in his innocence and with empathy he would ask “are you sad Mummy?” My mind would gush with the adult out-pouring that I craved, and my heart longed to squeeze him tight in a possessive embrace and to simply sob. Instead, I would pull him close and allow a few tears to roll down my cheeks as he nestled, unaware and protected, into the crook of my neck.
Adding another layer to my anxiety was the constant threat that my husband might leave the country.
With his family overseas, and aware of the American-style of medical care, understandably his patience with the long, bewildering NHS process was reaching its limit. He wanted to fly away and check into a hospital that wouldn’t discharge him until they had uncovered exactly what was wrong, and treated him for it. Family and friends scattered across the globe were making suggestions; Germany, Costa Rica the USA… I had to admit, the idea of a quick diagnosis was giddily tempting, save a few key points:
- The kids and I couldn’t go with him. Our daughter, at just 3 months old, didn’t have a passport. There was a chance that if he got on a plane, I would never see him again.
- Being his advocate would be significantly harder. Even if I could follow him later with the kids, I was unsure of my ability to be his advocate in an unfamiliar medical system, living in a hotel and possibly operating in a foreign language.
- The NHS has a world-class specialist cancer treatment hospital. If the diagnosis was cancer, then the UK was the place to be.
I felt trapped. I selfishly wanted him to stay, but what if that meant everything happened too late? What if by staying it ultimately led to the worst prognosis? How could I stop him from going?
In truth, I couldn’t. Every day or so he would send me flight details and ask my opinion.
If I didn’t want my husband to leave the country, I had to take matters into my own hands. I had to make the NHS work for us – I could no longer wait for the cogs of the NHS to slowly turn on their own.
In and around being Mummy, housewife and nurse to my poorly husband, I contacted the Patient Advice and Liaison Services (PALS). I updated them almost daily with the lack of progress in my husband’s diagnosis. I spent hours on the phone, ringing the abundance of wrong numbers on hospital websites and waiting on hold to finally reach the relevant secretary or other admin person. I chased everything up and followed every possible avenue to check that everything was in place, all the paperwork had been done and the right people explicitly knew our situation.
Just in case all my efforts were in vain, I also organized my daughter’s passport. I gathered all the relevant documents and signatures and managed to get a photograph of my 3 month old looking straight at the camera with eyes open (no mean feat!). I also just about managed to hold it together in the Post Office when I was told they couldn’t accept my application because of a typo – the fear of my husband flying away without us was renewed and amplified. Somehow I managed not to burst into floods of tears as, at the same time, my toddler was having a meltdown near the stick-it notes and my daughter, strapped to my chest, was desperately head butting me for milk, which had by now, glamorously, saturated my breast pads and was trickling down my front.
At last, we received the phone call and were given confirmation of the ENT oncology appointment – just a few more agonizing days to wait. Thankfully this was enough progress to quell my husband’s itchy feet.
Midmorning the day before the ENT appointment, the Consultant Oncologist called my husband at home, which in itself seemed odd. Apparently, while showering, the ‘diagnosis’ had occurred to him – a rare and treatable bacterial infection known as ‘Cat Scratch’. He’d already booked blood tests to confirm his suspicion.
My husband was beaming – in an instant our future had gone from looking bleak to no longer being under threat. He wanted to celebrate, and I wanted to join him.
But I couldn’t celebrate.
My hugs and smiles were strained – something wasn’t right. I didn’t believe it was Cat Scratch – I knew it wasn’t Cat Scratch.
Cat scratch had come up as a possibility in my literature search when I first suspected something sinister. I had eliminated it as an option because the symptoms and timeline didn’t quite fit. I had concluded Lymphoma and/or an abdominal tumour. From my research I had concluded cancer and, as always, I trusted my research.
This was not what my husband wanted to hear from me. He was ready to cancel the ENT oncology appointment – after all who was I to diagnose cancer when the oncologist said infection?
Thankfully, he agreed to go to the appointment.
In the waiting room my Mum rocked the pram. I buzzed with nervous anticipation and my husband fidgeted. This had to be the appointment when things moved ahead. Finally we were called in. After a series of examinations and questions, the oncologist paused, looked at his hands then announced that he thought my husband was seriously ill, and that he probably had been for some time. His best guess was Lymphoma.
Wow. The sense of relief was almost overwhelming – at last someone was on the same page as me, now they surely must take quicker action. But relief was quickly replaced by reality and a renewed terror – this was really happening.
He was booked in for a biopsy and finally was given a referral for a CT scan – something I had asked the GP for at the original appointment. But, again we faced weeks of waiting – waiting knowing that the most likely scenario was cancer, but not knowing the severity or prognosis.
Anxiety hit a new level and the waiting became unbearable. I reverted back to what I know best – proactivity, research and data. I organized paperwork and booked CT scans at private clinics (some 6hours drive away) in the hope of expediting diagnostic tests. But perhaps most significantly, I presented the facts of our experience to PALS and pointed out that the Government’s Cancer Pledge is “A maximum 2 month (62 day) wait from urgent referral for suspected cancer to first treatment for all cancers” – we were on day 65 and looking at a further 14-21days before diagnosis.
The day after I sent that email my husband had a CT scan. Two days later he got a phone call asking him to go to the hospital immediately for a biopsy of his swollen lymph node.
A few days after surgery, my husband attended the blood clinic appointment booked to test the Cat Scratch hypothesis. This was the only appointment I didn’t attend – I had the kids and it was supposed to be a routine blood test. However, unannounced the Consultant Oncologist turned up to the clinic and presented my husband with a diagnosis:
Cancer. Metastasized Germ Cell Carcinoma, including a 7cm mass in his abdomen.
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