27 January 2010 – The Waiting and The News (Cancer and Me 7)
I was aware that the OGD incorporated a biopsy, but I didn’t really know what they needed a biopsy for. By that stage I was just thinking that they were doing all the tests they could think of and trying to keep an open mind.
Certainly they weren’t telling me anything. The surgical doctors stopped coming to see me so much on their ward rounds. If there were more tests to go for, then it would be a nurse who would come and tell me, or it would be one of the ward junior doctors. It was frustrating because they were never aware of the full case, and could never answer many questions.
So the vacuum of information gets filled with speculation and anxiety. I admit that I wasn’t that worried. I felt fine most of the time, even though I was losing weight constantly and being sick regularly. I trusted that they’d come up with the answer eventually. Until then I was happy to take a day at a time, and do whatever tests they told me to submit to. Heidi, my wife, on the other hand, was different. She was convinced it was going to be bad news. She kept saying to me, every day, “they’re going to tell you you’ve got cancer, I just know it”. And I’d say, “You can’t think like that! How do you know? They haven’t said anything like that. Why think the worst when you’ve nothing to base your conclusion on?”
But she is a worrier and nothing will reassure her when she worries.
Heidi eventually pinned one of the Registrars down, and got her to answer questions about what they were looking for and what could be wrong. Of course, she had to say that they were looking at a number of different possibilities. Heidi is always direct, so she asked the doctor straight out whether they thought it might be cancer. And the doctor admitted that one of the possibilities was a type of cancer, but stressed it was only one option. That was enough to fuel Heidi’s anxiety even more.
The waiting, the not knowing, the uncertainty, can be agonizing. But I guess if the doctors told you every detail of what they were thinking, and what they were testing for, and what the draft results and interim results were showing, then you may either get false hope or needless worry. I think it’s quite understandable that they should try to avoid patients when they have nothing new and conclusive to say. And, if you’ll forgive the pun, you have to be a patient patient! Test results take time to come back, and reports take time to be written. And you’re not the only person in the hospital. Also you have to understand that the doctors don’t always make a diagnosis in isolation. In serious cases they discuss diagnosis and treatment plans in regular cross-discipline meetings, and so sometimes you have to wait for one of those to come along. It is very tempting to chase up the doctors every day, but normally it’s just a waste of time – yours and, more importantly, theirs. On the other hand, occasional prompting via the nurses, especially if nothing has been said for several days, can be worthwhile.
I was sitting on my bed in the bay in C4 one evening – Wednesday 27th January 2010 – and one of the young surgical Registrars came in to see me. She pulled the curtain around the bed, as is normal practice. Normally, though, she would have been accompanied by a Senior House Officer (junior doctor) and a nurse, at least, if it was anything important. It was the same doctor that had saved my life when I had the allergic reaction to penicillin at Christmas. She looked a little nervous, but started speaking straight away. I don’t actually remember exactly what she said. But by the time she left I knew that I was suffering with lymphoma, that this was a type of cancer and that this had been causing a growing blockage in my duodenum.
I think I felt a little numb immediately. I knew that I had my friend, Tim, coming to visit me very soon. It was too late to cancel, as he would have set off already. So he was the one to hear the news from me first. I decided that I wasn’t going to phone Heidi immediately, as she was dealing with the kids’ dinner and bedtime, and upsetting her at that time would have caused upset for the whole family all at once. So I used Tim as a sounding board to help me work out how to tell Heidi and the kids.
I was nervous telling Heidi, but her reaction, if I remember rightly, was not as emotional as I expected. I think she must have been mentally preparing for it, so to be finally told was not such a shock. I proposed that we should ask Beth, Heidi’s sister, if she could tell the kids. She is a nurse, and so she has a confident air when she talks about medical things. Heidi agreed. I reasoned that Heidi would be too likely to get upset and therefore upset the kids more than necessary.
Even though it all got communicated as discussed, it was still unpleasant for me. I suppose I wouldn’t have especially relished telling the kids face to face. But the fact that I was stuck in hospital, unable to give them any comfort or reassurance, was so upsetting.
The nurses were so sweet to me. One or two of them took time to come and sit down and chat with me and make sure I was coping ok with the news. They were all so sympathetic. The senior nurses even persuaded the ‘bed manager’ to permit me to be moved to a private side room for more privacy.
And through circumstances I was able to stay in that private room for the rest of my stay. Shortly afterwards there was an outbreak of norovirus, so they had to keep the wards isolated and restrict visiting. But it meant I couldn’t move, even though technically I was now under the care of a different department. Some people would have been eager to move to the new ward, or might have preferred to be in a bay with other people. But it suited me to stay where I was. I preferred my own company and privacy (and I slept better), and I had grown attached to the nurses on the ward.
So my battle with cancer began.