It was a year ago today that I had that call. The day where everything flew into the air and I had no idea how things were going to land.
The following weeks and months after that call were a blur. I don’t really remember much what happened. But I remember telling Peta. And the kids. And my parents. Telling them was the hardest. I spoke to my business partner. I was not going to be in work for a while.
Everyone wanted to help. Friends turned up with frozen meals. People offered to walk the dog. I was in an out of the hospital in Bath for tests. Breathing tests. Blood tests. X-rays. CT scans.
Wednesday November 30, 2019.
I went into the respiratory clinic in Bath pretty fast to see a consultant. They were kind but pragmatic. I was facing three diagnostic scenarios based on the initial findings: lung cancer, lymphoma or sarcoidosis. I was told that the worst case scenario was lung cancer and that would be life shortening. Lymphoma would mean referral to another unit that specialised in blood diseases whilst Sarcoidosis was the best case scenario but was pretty rare. Found myself thinking “I hope I have a good cancer” like an idiot.
They wouldn’t know what the problem was until they had done a biopsy of the lymph nodes in my chest. That required an EBUS which was hastily arranged where a tube is inserted into the lungs to view the lymph nodes and take diagnostic samples of the growths on these glands.
Monday December 2, 2019
I got a phone call saying there had been a cancellation and they can bring forward the EBUS. Great news but I was pretty nervous. I’m sure atop my (quite substantial at this point) NHS records it says in massive words “hypochondriac and a bit of a wimp.” I have a quite low pain threshold and I’m terrified of needles (despite having had to give several gallons of blood samples by this point).
Needing a cannula I gowned up and they couldn’t find the bloody vein (pun-intended). Two nurses and a doctor tried on both arms but just couldn’t get it in. A rather no-nonsense doctor then came in and promptly found something that would work. “You’re going to end up with a bit of a bruise”.
I was wheeled in and administered some drugs. The EBUS itself wasn’t painful but I had to be awake for the procedure which was pretty uncomfortable. 45 mins or so to take 4 or 5 samples from the lungs all whilst instinctively trying to suppress a gagging reflex.
They got the samples they needed. It would be about a week before I would get the results.
Tuesday December 10, 2019
Less than four weeks from that call.
Me and Peta went into the RUH to see the consultant. Good news. Great news. “We found granulomas indicative of Sarcoidosis”. I never thought I would have been so delighted to hear the words “you have an autoimmune disease.” The sense of release was amazing. I was not looking at a death sentence or a period of chemotherapy.
It perhaps came as no surprise. My mother has the autoimmune disease Lupus and my uncle had chronic Rheumatoid Arthritis. I come from a family where obscure illnesses are like a game of Top Trumps. But this was a new one. Sarcoidosis … the only people that seem to have heard of the condition were fans of the TV Series House where it is the running joke for obscure illnesses they can’t quite diagnose.
What was Sarcoidosis? In simplest terms it is a disease where your immune response attacks your organs, usually when it perceives it is under threat. It basically massively overreacts like a petulant man-baby. It’s like bringing a hand grenade to a knife fight. It is probably going to win but there is going to be massive collateral damage.
In my case the sarcoidosis was affecting my lungs. 80-90% of cases of sarcoidosis are on the lymph nodes and lungs. But it can affect any of the body’s organs. It is a rare condition, affecting 1 in every 10,000 people, but is poorly understood.
Over the coming weeks we discussed what next. After the euphoria of the initial diagnosis there was now a period of uncertainty. How will this condition evolve. How can I manage it. Can we treat it? Sadly few answers were forthcoming and the general consensus seemed to be we would only know by observing it over time.
Life was going to change. Things were going to be difficult. I still had to get my head round this new condition but hopefully things were going to be manageable.