Thursday, 17 November 2011

A final diagnosis

It was now time for me to go back to university. I had to miss Freshers Week due to recovering from the suregery under my arm and went back up on the Monday of when lectures were meant to begin. I had arranged a lift back home to London for Wednesday afternoon for the Jewish New Year. However, on Tuesday morning I received a phone call from my parents. The rheumatologist had rang and wants to see us Wednesday early afternoon. The nerves start to kick in. I booked a train instantly for the Wednesday morning to arrive back at Edgware around 2pm and we went straight to the hospital. The atmosphere in the car on the way there was tense. Both my parents and my sister were in the car and I went expecting the worst with the assumption that any good news would seem really great, and if it was bad news, then I would be prepared.

We arrived in the rheumatology clinic, now a familiar location and waited to be seen. A nurse called me over to take my blood pressure. For the first time, my pulse was slightly racing, which showed up from my blood pressure and was very nervous.

The doctor saw us, and called us into her office. My heart was racing and my palms were sweating. She sat us all down and told us she had my test results back from what the surgeon had removed the previous week. By now I was a bit of an uncontrollable mess and she opened her mouth. "You have lymphoma", were her words and at that point, the tears that had built up inside me burst out. This was the first point through this whole ordeal I'd shown any emotion. All the needles, countless appointments, scans, uncertainty, consultations, biopsies, operations, pills hadn't phased me in the previous six months, but hearing I had cancer for the first time brought out a completely different side to me. I tried to compose myself as best as I could and looked over at my family and could see a sea of tears and emotion. Even though I had entered the room assuming the worst, nothing could have prepared me for that.

The doctor was handing out tissues left, right and centre and once composure had been regained, she carried on. She went on to explain how dermatomyositis is often driven by something, and when the steroid infusions had no effect and my neck scar wasn't healing, she thought there must be something else as well. Although when they tested what they had taken from my neck for lymphoma already, it didn't show. She said the sample they took must have been too small and had they taken more, we could have found it earlier. In your body are millions of lymph nodes, and you just have to find the ones with cancer in order to diagnose. There is no direct way to tell from your blood.

She had arranged for a Heamotologist to come talk to us, who was going to take over the cancer care, as this was now out of her speciality. She went to get him and she still sat with us through our whole meeting with him. He explained that my case was very confusing and that there are two types of lymphoma. Hodgkins and Non-Hodgkins, which can again be sub-categorised and it was taking a while for them to work out which type I had. Once they knew that, they would be able to tell me more about the exact treatment I would need. Either way it would have been chemotherapy, but they are slightly different depending on the type. He said that his team of Haemotologists were having a meeting about me at the end of the week and wanted to see us the following week. He had been positive about the prognosis and being young and relatively healthy was on my side.

We came home from the hospital and the phones didn't stop going, as friends and family knew we had this appointment. We went straight to tell my Grand-Parents, who were naturally heart-broken and very upset. As we got home, my mum's sisters, brother-in-law and one of my cousins were waiting on the door step to console and comfort. The Jewish Holidays continued as normal. I found it rather difficult telling people, as it is a really big thing, but the more I got used to it, the easier it became.

We went back the following week to see the doctor. My haemotologist was ill, so we saw his colleague who also happened to be at the meeting and was fully aware of my situation. She told me that I have Anaplastic Non-Hodgkins lymphoma, which is one of the rarer types and also talked me through the chemo, all the side effects etc. A few days later we returned to the hospital and saw my haemotologist who explained exactly what was going to happen. He also told me I would need a bone marrow aspiration, to check if the cancer had spread onto my bones and into the marrow. This was probably one of the most uncomfortable experiences. Ever. We met his beautiful registrar who was going to perform the procedure. I had to lay on my side, trousers pretty far down whilst she shoved (and I say that quite literally) a MASSIVE needle into the back of my hip. They can anaesthetise the area, but are unable to anaesthetise the actual bone. At this point she said I could scream/swear, whatever. And I did. One huge profanity later and it was all over. She showed us everything she took. It was quite grotesque, yet really interesting. With that, chemo was due to start the following week!

1 comment:

  1. Hi Alex, I dont know you, but you're story is inspiring, you are a very strong one