19 May 2015 – Predictable but Unexpected (Cancer and Me 29)

1st August 2015 0 By Andy Burrows

I had my post-treatment routine CT scan on 6 May. My follow up appointment was pre-booked for 29th. The predictable thing, which I referred to at the end of the last instalment, was that there would be anxiety, wondering if the scan would show up anything abnormal. But at least beforehand I was telling myself (and Heidi) that this was a routine scan. There is no reason why a routine scan should show anything.

However, things have taken a more unexpected turn.

I had some pain in my groin on a Friday just over a week ago. It was quite bad. I remember grading it out of 10 in my head, and getting to 5 at some points in the day. I was at work and getting by with the pain, but at times only just. I put it down to the hernia that had been diagnosed 18 months ago. But I’d never taken the consultant’s advice and seen my GP for a referral for hernia repair surgery, because it never felt bad enough. So I thought it was about time to make that appointment, and did so for the following Monday.

In the meantime, over the weekend, I had some fairly strenuous DIY (by my standards) to do – replacing all the deck boards on our decking. And by the end of the weekend I was feeling ill as well, with virus-type aches.

When I saw the GP on Monday he pointed out that I had a low level fever (37.4C), but didn’t dispute that my pain was because of the hernia. But he didn’t really give much diagnosis at all, just played back what I was telling him. So I didn’t even ask for the referral I was thinking about, and just went away resolving to see how it goes and if it didn’t get any better I’d go back.

The problem was that at the same time I became aware that close to the hernia there is a hard painful lump. The GP didn’t comment on it, but was clearly aware of it when he pressed on my abdomen, and I was thinking about it, and trying to rationalise how the hernia could have caused it.

Days passed by, and the ill feeling passed, but the groin-ache didn’t. It faded a bit, but the lump was still there. Heidi, ever the worrier, phoned the nurse specialist at the hospital a couple of times, and she confirmed that I should go back to the GP again and in the meantime they would phone me with the CT scan results as soon as they’d been reported.

So I went back to the GP surgery on Friday, and asked the doctor specifically whether the painful lump was definitely related to the hernia. His answer was that the lump was a lump and was nothing to do with the hernia. He advised that if I hadn’t got the CT scan results back yet I should try to chase them up. He would have done a referral letter there and then, but we agreed it was quicker for me to call the hospital myself again and tell them.

So I did, and the nurse specialist spoke to the haematology consultant and, though the scan hadn’t yet been reported, they were going to have a look at it. And they booked me in on an appointment at 8:45am Tuesday morning (19 May) – four days later!

Heidi was absolutely certain that the lymphoma was back. I was 70% convinced. I wished that I could just wait until I saw the doctor before I let my mind race, but having a worrying wife doesn’t give me that luxury.

Looking back, I have had groin pain occasionally over the last few months. Nothing as bad as last week, but in the same location. And the virus-type aches have been there on a few occasions over the last couple of months too. I had just put it down to the fact that Rituximab can make one immunosuppressed after a long course, and ignored the puzzling fact that my immunoglobulin levels have been impressively and surprisingly high for someone who has been treated with Rituximab for two years.

So we braced ourselves for three-and-a-half agonising days of uncertainty. Heidi wondered how we would get through it. But you do. You just do. You can’t avoid the passage of time. My attitude is to forget about it and get on with the normal routine, because there is no point thinking over something that isn’t going to change by thinking it over. But Heidi is different. Her approach is to wonder, question, research, guess, predict, do what-if analysis, and basically tire herself out thinking about it constantly. Which means it’s difficult for me to remain calm.

But we got through those days and I went to see the consultant at Basingstoke hospital this morning.

She told me what we’d already concluded – it’s back again, for a third time. She confirmed that the lymph nodes had shown up on the CT scan. I need a biopsy to confirm whether it’s high- or low-grade lymphoma. She said the fact that it seems to come and go, in terms of discomfort, is an indication that it’s behaving like low-grade lymphoma, but the biopsy will be conclusive.

If it’s high grade there will be chemo and a stem cell transplant. If it’s low grade then there are some options. They may continue to ‘watch and wait’ and do no treatment at all until they really have to. Opinion seems to have moved away from treating low grade lymphoma with stem cell transplants (so I was told), and new treatments are due to become available in the future. So all depends on the biopsy and the recommendations of the specialists at Southampton General Hospital.

The biopsy should be done in the next week or so, and then the results of that take about 7 days or so to come through. So we have at least another two weeks of waiting and wondering whether another round of treatment is imminent.

We knew it would come back, so in some ways it shouldn’t be a shock. But it is. We’re keeping it from the kids until biopsy results are through and the treatment plan is clear, especially because Joe is doing GCSE exams just now. He could do without this distraction if possible.

But in the meantime it’s going to be difficult putting on a brave normal face, and carrying on as normal at home and at work.