A mammoth undertaking

In this image you can see a scan of my torso from the back, on the left and the front, on the right. In the left hand image, right in the middle of the chest there is a dark spot. That is the tumour on my T8 vertebra showing as a “hotspot” in this bone scan. In the right hand image, between the two wings of my pelvis, you can see another smaller dark spot, which is the anomaly on the L5 vertebra, which may or may not be a tumour. It is the T8 tumour that underlies all of the back pain I have been experiencing over the last two weeks.

How do we know that it’s a tumour on the spine? We have pictures from a second CT scan.

This is a picture showing my T7 vertebra. It’s white and kidney-shaped at the bottom of the image. Notice that it is bright only around the edge of the structure, and almost uniformly dark inside it. Now here is a picture showing the T8 vertebra.

This time, you can see that there is an extra bright line inside the structure. The consultant says that this is the sclerosis marking the retreat of the tumour and the healing of the bone. That tumour is the one that we think has been pressing on my nerves, causing my all that pain.

You might also be curious about the bright circle just left of centre. That is the biliary stent that was fitted in early January. It’s metal and shows up particularly well, I think.

Well, that’s it. Just a short post today to show how we know some of what is happening to me. Just think, without all this technology, I may well have had the surgery to excise the tumour from my stomach and oesophagus, only to find that the tumour had metastasized, and that the surgery would make no difference to the eventual outcome, except that it would have given me substantially more discomfort. Thank heavens for modern technology!

Today I had my second dose of radiotherapy, prescribed to address the back pain I have been experiencing lately. I thought I ought to describe what happened, as it was all new to me. This was meant to be palliative therapy rather than curative therapy, so it may well differ in detail from others’ experiences, but I’m sure the essentials are much the same.

We knew, from CT scans and a bone scan, that there was at least one tumour on my T8 vertebra, and probably another on my L5 vertebra. It was the tumour on T8 that has been causing me problems for the last week or more, so the consultant booked me in for this palliative therapy fairly soon after my fifth cycle of chemotherapy started. On Tuesday I went back to Cheltenham to have the first dose of radiotherapy. But before they could actually give it to me they had to work out where it would go. I was placed in a simulator, flat on my back as that was the only position I could adopt at all comfortably, and some X-rays were taken to identify the relevant locations. Then an eight-centimetre square was projected onto my stomach so that the technician could first draw it in with a permanent marker, and then put in some small tattooed dots at the corners and centre of the square. That process was repeated on my chest, for the T8 vertebra. Then it was back to the waiting room for about 40 minutes, to wait for just one of the doses to be given.

I was taken into another room and asked to lie on another table, just like the previous one. My head was pillowed in a cup to prevent it moving, and then the table was moved around until the projected square lined up with the marks on my chest. Then the whole mechanism rotated around my body so that it pointed at my back instead of at my front. The technicians left the room, and shortly afterwards a buzzing sound started. It went on for about a minute, then stopped, and then started again for about ten seconds. That was it. The technicians came back in and said I was free to go.

I noticed that the skin on my back had grown quite warm, as though it were slightly sunburnt. I was expecting this, but not as immediately as it seemed to come on. When I got home, Gillian slathered the region in aqueous cream that we had put into the fridge to cool down. It was definitely soothing, but I’m not sure how necessary it was for a single dose. I think if I were having a course of radiotherapy I would be keener on treating the burning, as I’m sure it would build up over 20 or 30 sessions.

Today I went back to Cheltenham, driven very kindly by Hugh because Gillian had to be in work today, and the process was repeated. This time I was a little more with it and managed to ask a few technical questions about the system. So now I know that the machine I was using was a linear accelerator with a beam energy of 6 MeV, and was set to deliver a dose of 8 Grays, which I understand is quite a high single dose, but normal for a single, palliative treatment.

This week has been dominated by pain and its management, but it’s not all bad news.

On Monday and Tuesday this week my parents in law came to visit. It’s a bit difficult to put them up here at the moment, as Gillian and I are sleeping in separate rooms so that my disturbed nights don’t disturb her any more than absolutely necessary. They stayed in a nearby hotel, and on Monday we ate there, so on Tuesday I cooked for them here. My back was troubling me a little, and I hadn’t been sleeping well, so I was a little restless, and flagged quite quickly. They were very good about not staying late, which I much appreciated.

On Wednesday morning I woke up in considerable pain, which grew worse as the morning went on. Gillian drove to hospital, at my request, and I could hardly sit still during the meeting with the consultant. He suggested I took ibuprofen, which worked surprisingly well. He also said that he would arrange for a single session of radiotherapy to treat the pain, which will now take place next Tuesday.

On mature reflection the thing that reduced my pain the most on Wednesday was not the ibuprofen, but sitting slouched in one of the treatment armchairs, rather than on the standard straight backed waiting room chairs. I took inspiration from that experience and moved to the sofa from my usual chair, and spent all day Thursday there, and was much more comfortable at the end of the day. The pain returned overnight, however, as I was still sleeping in my normal position, with just a single pillow.

I had been looking forward to the start of the (delayed) cycle 5, as I knew I would get a night in a hospital bed which has a mechanism to raise the head, almost to vertical if you like. That worked really well, and I was so free of pain that I drove home from Cheltenham after the chemotherapy was over. I think another thing that helped was a transfusion of two units of blood, about which I’ll write more later.

Last night I made a wedge of five pillows, which was nearly as good as the raised head of the hospital bed, but still not quite right, as some of the lower pillows dug gently into my back. Gillian spoke about this with her mother, who kindly sent some pictures of how nurses used to make a wedge of four or five pillows back in the days before electrical hospital beds. She had learned this trick from her own mother, who had been a nurse in her day. I’ve now made up this new wedge, and briefly tested it, and it seems to be much better than my own poor invention. If things go well, I’ll describe it in more detail in a later post too.

The current theory about the pain is that the tumour is pressing on a nerve, which I perceive as pain in the muscles in my back and as a band of tightness around my chest. I understand that these are classic symptoms of a tumour pressing on a nerve, so I’m confident that the radiotherapy will help a lot. It also helped me understand how to manage my posture to prevent my body from putting more pressure on the tumour than absolutely necessary. On Wednesday morning I was almost in despair about the pain, and the thought of having to wait almost a week until the radiotherapy could make it go away. Learning how to manage the pain was a huge boost to my mood, and yet another lesson that I don’t always have to put up with a bad situation and wait for others to make it go away.

When I first went to the GP complaining about difficulty swallowing, I was (mis-)diagnosed with acid reflux, and was eventually prescribed Omeprazole, a proton pump inhibitor, to try to reduce the excess acid I was supposedly producing. Actually, my stomach was causing me some pain, and the Omeprazole did help, so I suppose the tumour must have been causing my stomach to over-produce acid. However, that’s not the point of this post. Because of the acid stomach, I was told to avoid pain killers like aspirin and ibuprofen, because they can aggravate an acid stomach. Ever since then I have relied on paracetamol and morphine for pain relief. In fact, I’m on a permanent paracetamol prescription these days, so I can’t add any more, and must rely solely on morphine if the pain gets really bad.

This morning I woke up with a re-appearance of my recent back pain, except that it was a lot more severe than it had been. By the time we got to the hospital for my regular Wednesday appointment I was having considerable difficulty walking, and I could hardly sit still in my chair. I had already taken 10mg morphine, which I thought ought to be enough, but it didn’t touch the pain at all. At the hospital we got to see the consultant nice and early, and the pain and how to treat it was the main topic of conversation. I learned a lot, much of it quite a surprise to me.

First, 10mg morphine turns out to be quite a small dose. I knew that morphine is a relatively safe drug, but I’m always wary of taking more than I need, so I had somehow got the impression that 10mg was a normal dose, while 20mg was somehow exceptional, for very bad pain. That was definitely a misconception that was worth correcting.

Second, morphine, even when given as a slow-release tablet, ought to start acting in no more than about 30 minutes, so if the pain isn’t significantly reduced after that time, it makes sense to add a second dose of morphine.

Third, and most surprising, was that it is perfectly acceptable to take ibuprofen, even though I am taking Omeprazole. In fact, it seemed to be the case that I could take ibuprofen because I am taking the Omeprazole. When I found that out, I took some straight away. Within 30 minutes the pain was reducing, and after 40 minutes it was almost gone. By the time we left the hospital I was quite happy to drive, which is a huge contrast to the journey in, when I couldn’t even have conceived of driving so great a distance.

Blessed ibuprofen!