MarySmith’sPlace – Cancer Diary #01

September 06: I’ve been dithering for a while about whether or not to blog about this but decided what the hell, it’s my blog and I can write what I want. Writing helps me to process what’s happening – and a lot is happening right now, the biggest of all being a lung cancer diagnosis. I’m still trying to get my head round it.

I was whipped into hospital on July 06 with extreme breathlessness, which my GP suspected was caused by pulmonary emboli (blood clots in my lungs). Blood tests and CT scan very quickly showed he was correct. I was put on Dalteparin injections to dissolve the clots.

Then a consultant appeared to tell me during the scan a ‘mass’ was seen in my right lung, which would need further investigations. I asked if it was perhaps an old shadow from when I had TB many years ago. She shook her head. I said: “You think it’s cancer, don’t you?”

“Well,” she said, “as you have introduced the word to the conversation, yes, there is a distinct possibility it is cancer. However, we won’t know until we do more tests. We’ll do another scan tomorrow to check there is no involvement in other areas such as pelvis or liver. The next step will be a PET scan in Edinburgh.”  

With no visitors allowed I could only talk to the DH on the phone. Neither of us really knew what to say or think. We say goodnight. I find myself in tears. I don’t want to have cancer. I don’t have time. I have more books I want to write. Will I have time to even get one finished? How am I going to tell my son? He’s coming home for my birthday soon – first time we’ve seen each other since before lockdown.

The nurse I’ve mentally named Miss Hostility-and-full-make up goes by the window and turns away pretending not to notice I’m upset. That stops my tears. Later, when she comes to do the final observations I ask if it would be possible to have two paracetamol. “I’ll see what I can find,” she replies.

I do not say. “This is a fucking hospital – there must be headache pills available.”

The second scan doesn’t show up anything lurking in my liver. Felt ridiculously pleased about that.

July 29: I had the PET scan (Positron Emission Tomography). A radioactive glucose tracer is injected which is attracted to any ‘hot spots’ in the body.

August 04: The consultant phones me to tell me the lesion and some lymph nodes in the chest are positive, as expected. She says tiny lymph glands above my collarbones also show signs of uptake.

August 12: This day will never be forgotten! I’m getting ready to head to the hospital, after a sleepless night worrying about the bronchoscopy when someone phones to say the bronchoscopy has to be cancelled. It can’t be done unless the patient has had a negative Covid-19 test within the last 48 hours. There’s nothing to say so on the appointment letter. Another consultant phones and tells me to come into the hospital and he’ll arrange the Covid test. While waiting for the technician Dr X shows me the slides from the PET scan. The tumour is enormous, taking up a huge amount of space. It is, he tells me 7cm. He answers my questions, explains about targeted treatments, radical treatments and mentions something suspicious on my spine.

After my Covid test is done I go outside to wait for the result. I feel healthier than I have done in ages. I can breathe. I’ve stopped coughing, the sun is shining. I wish I could’ve stopped time just there, just then.

The radiologist who had hoped to do an ultrasound biopsy of the tiny lymph nodes said they lymph nodes were smaller than his smallest biopsy needle and he was not going to attempt a biopsy.

Next came the bronchoscopy to take tissue from the tumour in my lung to enable them to determine what kind of cancer I have and to work out the specific mutation to enable targeted treatment.

It was sheer hell. They put water in your lungs. I thought of Suffragettes being force fed, of prisoners being water-boarded. I thought if having cancer was going to involve more of this kind of thing then it was time to revise my position on legalising euthanasia – something I’ve always been against.

I didn’t sleep that night. It was the hottest night of the year and I was frozen. I replayed the horrors of the bronchoscopy over and over and over.

August 19: Dr X phoned to tell me my cancer is Adenocarcinoma. The genetic makeup hadn’t yet come through. He says he’s a bit worried about there not being enough tissue. I tell him I’m not having another bronchoscopy. They can put me to sleep and harvest everything they need while I’m under general anaesthetic. He will talk to the surgeon in Glasgow. He wants me to have an MRI scan on my spine and another CT scan to check there’s nothing on my brain.

August 25: I have the MRI and two CT scans – one for the brain and one to see if the collarbone lymph nodes are any bigger. I was lucky to get cancellations because the appointment letter was for September 11.

August 28: Dr X phones – no cancer in my brain or my spine. Yay! The tiny lymph nodes are no bigger. Unfortunately the tumour in my lung has doubled in size and has now collapsed the top part of my lung. Also, they can’t work out the mutation of the cancer cells because enough tissue had not been taken. There is no more talk of targeted treatment or radical therapy. Dr X tells me the oncologist will now consider standard treatment of chemo followed by radiotherapy. I’m stunned by the implications of all this. September 04: The oncologist’s secretary phones this afternoon to offer me an appointment on Monday 07 – a full two months after the tumour was found; a tumour which is growing at a terrifying rate.