It began with me downing 2 large glasses of orange juice upon returning home after a long day. I immediately felt bloated and had epigastric discomfort. Nausea began to rise and I had to run to the loo, where I retched for several minutes, only bringing up orange phlegm. Over the next few weeks the same thing happened after random meals, sometimes having only taken a couple of bites. I sometimes found it difficult to swallow.
I went to see my GP, Kara, and a Gastroscopy was requested. It wasn’t as bad as I had expected and I started with just the throat spray. I swallowed the endoscope easily, but it touched the back of my throat and I began retching; despite my best efforts I couldn’t stop, which meant the procedure had to be halted. I was sedated and don’t remember anything until I woke up in recovery. The gastroenterologist told me he had found an area that was abnormal, irregular, and bleeding. He had taken biopsies, but that if the result came back negative, I would need the procedure to be repeated. That said it all really; right there I knew. I would also need a CT scan.
I called my GP’s secretary a few days later. They had the result, it was negative. I would need a second Gastroscopy. She gave me the number for the Gastroenterology Department Secretary, so that I could call and chase.
I had the CT scan the day after I called. It was in a deserted Radiology department at 1930h. The Radiologist could not have been nicer; I was cannulated for the radio opaque contrast and asked to swallow a lemon flavoured powder, which would make my stomach swell. It was completed in a few minutes; the result would be written by a Consultant Radiologist within a few days. It was Thursday, maybe by Tuesday.
On Monday I called the Gastro Secretary; The result was back. I would need to see a Consultant Gastroenterologist the following morning.
Abbie, my eldest daughter, came with me to the appointment. The Consultant, told us that the scan showed an aggressive Cancer/Tumour extending the length of the Fundus and around the Gastro Oesophageal Junction…
This I kind of expected, but the ‘FUCK ME’ moment was as she went on to tell us there were multiple Liver Metastases and a peritoneal nodule. This meant that surgery would not be appropriate and treatment would be Palliative…
Silence… and a deep breath. Abbie and I hug; there are tears.
The Doctor talks on… The Lungs, Pancreas, Kidneys and Bones are clear, and I have no ascites (fluid in the abdomen). I will be referred for a repeat Gastroscopy, for further biopsies, and to see an Oncologist.
Throughout this process I have been talking to my children, siblings, close friends and the senior Nurses at work. They have all been bloody fantastic. Work could not be more supportive (I love my job), but talking can be exhausting.
The Endoscopy goes ahead without a problem; I’m heavily sedated this time. I meet the Oncologist with all three children and a Nurse Specialist (who I know, having worked alongside her on Surgical wards for 9 years). The Chemotherapy regime and side effects are explained. The hair loss (including eyelashes,eyebrows and beard), nausea, diarrhoea, peripheral nerve pain/damage and we discuss the risks associated with a drop in my immune system. A loss of memory and concentration worries the children, because they already feel this is an issue 🙂
I ask about prognosis; we already know its not good, but I want to know if I can have some idea of time. I need to plan; I’ve been a single parent for the last 11 years, we live in rented accommodation and the children are still so young; Jacob is only 19 for fuck’s sake.
The answer is ‘ If the Chemo does its job, hopefully a year…’ – ‘FUCK ME’ moment number two
another deep breath and a group hug…
I’m given a small forest in leaflets and booklets. I’ll be contacted by the Dietician. I get a form to send off for free prescriptions. We discuss how I can best continue to work for as long as possible. The Consultant has been trying to find out if she can get me onto an Immunotherapy clinical trial; one has just closed locally, but she’s going to talk to the Professor running it to see if I can be added. She will also talk to the Royal Marsden…
Immunotherapy is potentially fantastic. The drugs given boost your immune system to fight the cancer. It has minimal side effects, the only negative being that whilst you have the therapy the cancer can continue to grow and spread.
We leave. There are more tears, but we are together. A Year… Better get a crack on.
Over the next few days the children come up with the idea of a Bucket List and we talk about what we can put on it; a parachute jump, a unique family tattoo, finishing the conversion of my van into a camper and getting out in it, going to see a favourite Band, a big family holiday next summer, in Spain, at my Brother, Mike, and Montse’s place…
The sad things that hit me are that I will be a long time gone, that I won’t get to meet whomever Hattie and Jacob choose as partners, and I won’t get to be the worst/best Grandad. I won’t be there when the children need advice and support. But I’m lucky; I have been privileged. I have a loving family surrounding me; I have several other families – my political family, my work family, my dance family – wonderful friendships. I know how I’m going to die, not as I imagined, of a stroke in 20 years or so; I have time to say goodbye, and to have those conversations we should always have.
Bringing you up to date.. I have been accepted onto a clinical trial involving a combination of Immunotherapy and Chemotherapy; I’m meeting the Research Nurse today for consent, a CT scan and bloods. I will begin 4 weeks of therapy soon after. Chemotherapy will begin in December.
I’m a Nurse, I’ve seen how fragile and random life can be, and I’ve seen death a thousand times. I haven’t had any ‘why me?’ moment, and I have no fear of death.
Why write this and put this ‘out there’? Simple, when I start to look like shit, am grumpy or short tempered, or not as active as I was, you’ll all know why, without me having to go into long, emotionally exhausting explanations.
I wasn’t sure if I’d be able to go to Calais with our group taking aid to refugees and migrants, but I now can. It’s going to be great. We’re taking 2 minibuses with 29 volunteers, and my van containing aid. My Sister Sally and Jacob are coming, and that is wonderful; it may be my last.
I will work, and campaign until I can’t.
Otherwise, I’m well. No pain, and blood pressure etc are really good. Neutrophils and CRP are slightly raised on bloods. I’ve lost weight, though I only know because I’ve noticed my motorbike jacket is looser.
I love a hug, so I’m up for lots of that, but please don’t say ‘sorry’, and don’t bring God or prayers into it. I’m a Socialist and Atheist, and I’m OK. Don’t pity me, I don’t do pity. I’ve had a bloody wonderful life so far; I really have no regrets, they’re a waste of time.
Finally, some advice, if I may:
- smile more, laugh more
- Love more
- Do it today, don’t wait assuming you’ll have time tomorrow
- NEVER VOTE TORY!
#KickouttheTories #refugeeswelcome #openborders #savetheNHS
Much love, me xxx