28 August 2012 – Much to Take In (Cancer and Me 18)
By the time I had the CT scan and was waiting for the results, to soften the disappointment for the kids, and to fill the time, we had booked other holiday activities. I’d booked Jake and Joe into a Chelsea FC Soccer School (which meant driving them to the Cobham training ground, 45 minutes away) for 4 days. And Heidi managed to find 9 or 10 days in a holiday bungalow in the Isle of Wight. We all went over on the ferry, and left Heidi with Tom and Anna and the car. Jake, Joe and I then came back for 4 or 5 nights, and I took them to their football. Mum and Dad managed to stay with my sister for a few days, and then came back over to stay in our house while I was there. At the end of that week Jake, Joe and I went down to Southampton on the train and caught the fast ferry over to the Isle of Wight to join the rest of the family for the remainder of the holiday. I knew I was spending the money based on the expectation of the travel insurance claim being paid, but we just had to do something. I didn’t want any moping around wondering what the temperature was in Sharm El Sheik. So doing nothing was not an option.
I chased up my haematologist a couple of times, and so did Heidi, but it was one of the days I was on my own that I took the call. I had actually just signed Jake and Joe in to their 3rd day at Chelsea FC’s training centre in Chobham at 9:30am, and I was sat in the car in the car park ready to drive home for the day. (I wish I could adequately describe what the training centre is like: It is about 180 acres of perfectly cut grass, immaculate buildings, trees, ponds and quiet roads. It’s like a country park or a private golf course. There are too many football pitches to count. Of course John Terry and co train out of sight of everyone else, and they would have been on holiday or on their pre-season tour at that time anyway. But it is the same site. And it really is lovely.) I spoke to the doctor on my mobile phone, and he confirmed that they had found lymphoma. I had to see him the following day.
I had the whole journey back plus an hour or so to consider how to tell Heidi. But when I did phone her she, rather surprisingly, took it in her stride. I guess she had been expecting it, and now the news had been confirmed she didn’t have to worry any more about it.
On Heidi’s advice I took Beth, my sister-in-law, with me, since she is medical. She was to ask the questions that Heidi might have asked, and be the one to explain things to Heidi. Heidi was going to ask her about things anyway, so she might as well have heard the diagnosis first hand to start with!
I was told that the CT scan showed enlarged lymph nodes in my groin and chest. So there was no question that it was lymphoma. They expected that it would be the same as before, so they started to prepare me for some pretty intense treatment. First there would be strong R-ICE chemotherapy, probably 4 lots, followed by a stem cell harvest, BEAM chemotherapy and stem cell ‘autograft’. So basically they were going to get the lymphoma out of my system, take my blood and harvest healthy stem cells, then use BEAM to kill off every blood cell in my body, and then inject the healthy stem cells back in order to grow healthy blood cells. The R-ICE chemo would have meant overnight stays in hospital every couple of weeks, and the stem cell autograft would have meant 2 weeks or more in isolation in Southampton hospital.
That all sounded really drastic since I was functioning pretty normally with only a bit of mild discomfort. I was certainly not showing any of the classic lymphoma symptoms – no night sweats, no weight loss, no lumps and bumps. Only two months earlier the consultant had poked and prodded me and asserted that I was fine. It was puzzling. But I started to mentally prepare – for the treatment and for more financial hardship.
The other really puzzling thing was that when we asked what the stomach problems were they said that they didn’t know. Apparently the stomach discomfort, and the raised CRP and amylase results, were not related to the lymphoma at all. And my blood test results were now all normal! So the issue that had led to us cancelling the holiday was nothing to do with the lymphoma they had now found. I was still feeling the mild discomfort in my gut, but they were less concerned about that now.
Before they could start the treatment they had to go through the formality of a biopsy to confirm the diagnosis. This time the biopsy was a CT-guided biopsy where they would take out (under local anaesthetic) the largest lymph node in my groin and test it. This was another week later, and I had to stay in hospital overnight as a precaution.
While I was there one of the haematology consultants tried to boost my confidence by telling me that the reason they were planning such drastic treatment was because they were going all out to cure the disease. They had not quite done so last time, so they were going to give it a blast and get rid of it this time round (while I was young enough to withstand the treatment is what I read into it). That was helpful. It certainly stopped me from thinking too much about cure rates and statistics.
I was back at work by this time, and trying to finish off what I’d been doing so that I could leave the project properly handed over. I was just taking the odd day off to go for tests and appointments. I was expecting to leave on the Friday before the start of treatment, which was scheduled for 10 September 2012.