Wednesday, 13 August 2014

Hodgkin's Lymphoma - Take Four!

A couple of days after my previous post, I woke-up in the middle of the night with pain in the right side of my chest. It was actually the second time that I'd done so; The first time was a few days previous. On the first occasion, it took me about half an hour to simply get sat-up, so that I could reach the phone to check with the hospital what I needed to do; It took that long as the pain in my chest increased substantially upon certain movements. Part of what made sitting-up especially difficult was that in the weeks prior to that I'd also been suffering from lower back pain, hence trying to find a way to sit-up without hurting either my back or my chest proved to be a challenge.

When I spoke to the hospital about the pain that I was experiencing, they suspected that it was likely just muscular pain, and that some painkillers should help to take the edge off the pain whilst I recovered naturally. However, with the chest pain occurring again, a few days later, and that it happened to coincide with an appointment for some routine blood tests etc, I asked to see one of the doctors whilst I was there, so that I could get checked over in person; i.e. not rely on my description over the phone.

As it happened, I'd had a routine CT scan a week previous, just to check that everything still looked fine, which I was yet to hear the results from, hence I asked whether the CT scan showed any potential causes of the pain. Unfortunately, at that point, the doctor was unable to view the CT scan, and a radiologist was yet to write the associated report to go along with it, hence I needed to have an x-ray. Once I got back from the x-ray, the doctor had somehow managed to view the CT scan, and could see that there was something in the right side of my chest; Possibly a pleural effusion (fluid around a lung). That meant I needed to be admitted, so that the fluid could be drained the next day, once the doctor had discussed the CT scan with a colleague/radiologist. Incidentally, if you've never seen a CT scanner, I recently took this photo of one:

CT Scanner

The next day, I was actually just discharged, as after further discussion had taken place, it was decided that I needed to have a PET-CT scan, and the next available slot for doing so would probably be in about a week. The rationale for the PET-CT scan was that what the CT scan showed wasn't entirely consistent with a pleural effusion, as the fluid wasn't quite everywhere that would be expected should that have been the case, hence it was looking more like yet another relapse of my Hodgkin's Lymphoma; i.e. the PET-CT scan would provide the additional information necessary to decide.

Note: In terms of the chest pain, I'd noticed that the days when it occurred seemed to coincide with the days when I was due a lower dose of steroids, hence I asked about amending my steroid dosage. The doctor was happy for me to try changing my steroid dose to 10mg/day, rather than a three day cycle of 5mg, 10mg and 10mg, as it was only a minor change, so it was unlikely to affect the results of the PET-CT scan. The change did prove to be enough to resolve the issue with the chest pain though.

Fortunately, spending the night in my local hospital, even if it does turn-out to be unnecessary, doesn't bother me, as the staff, ward and setting are all nice; In fact, given how much time I've spent there in recent years, it's almost like my second home. Plus, in the early evening, if you take a look out of your window, all that you're missing from watching a wildlife documentary is David Attenborough narrating; I did get a photo of one such visitor, when it came fairly close (click to view it full size):

Visiting Wildlife

It was just under a week later when I had the PET-CT scan, which turned-out to be not the nicest of experiences, as whilst laying down on the scanner only caused fairly mild back pain, and the PET-CT scan itself was fine, actually getting off the scanner was an entirely different story. Fortunately, the technician was especially helpful, not to mention patient, and between us we managed to find a way to get me off the scanner without it being too traumatic; It took about a quarter of an hour though, and there were a few sudden, sharp spikes in pain that definitely stopped me dead in my tracks.

When I got the results of the PET-CT scan, just under a week later, it was clear that my Hodgkin's Lymphoma had relapsed. Consequently, the doctor explained that because I've already had all of the treatments that are currently considered to be potential cures, all that was really left now was trying to control the cancer for as long as possible, using treatments that tend to be well-tolerated; i.e. allow for a good quality of life. No-one can really say how long or short that life will be; It could be several weeks, months or years. However, what the doctor did say was that eventually the Hodgkin's Lymphoma is going to kill me. Obviously, the doctor doesn't know that with absolute certainty, as a new treatment could be developed that does cure me, or I could get run-over by a bus, but clearly the prognosis was far from being good.

Note: Over the previous few months, there had been several signs that my Hodgkin's Lymphoma had relapsed, hence confirmation of that wasn't an entirely unexpected result of the scans. The problem is that often there are several potential explanations for a symptom. Some examples being: I had been itching, but that could have been from the skin GVHD; I had been coughing, but that could have been from the Influenza A that my immune system was struggling to eradicate; and blood tests showed that my erythrocyte sedimentation rate (ESR) was elevated, but it's just a non-specific measure of inflammation, hence that could have been from my big toes healing after the nails were permanently removed. Having said that, blood tests also showed that my lactate dehydrogenase (LDH) was gradually increasing; An elevated LDH is a potential indicator of Hodgkin's Lymphoma, hence it made me the most suspicious.

To give myself time to digest the news, as well as the various medical professionals involved in my case the opportunity to debate what is best to do next, we only briefly discussed what my treatment plan might look like going forwards, before arranging another appointment, for a few days later, where we would both be in a better position to go over the details. We did also organise some pain relief for my lower back, which would be reviewed at my next appointment, and agreed to increase my steroid dose to 100mg/day for five days, as that should help with treating the Hodgkin's Lymphoma.

Note: The pain relief was in the form of morphine sulphate solution (Oramorph); It quickly (20-30 minutes) relieves severe pain for a short period (3-6 hours). The idea being that it can be taken as/when required (within reason), as a way to determine the dose needed on a typical day. That Oramorph dose can then be replaced with the equivalent dose of morphine sulphate tablets (MST); MST is easier to administrate and acts over a longer period (8-12 hours), giving a more consistent level of pain relief. At which point, the Oramorph need only be used to cover any increases in pain.

Whilst the appointment in a few days' time seemed like a perfectly reasonable plan, it was only the next day that I threw a spanner in the works, and consequently was admitted to my local hospital. I was an inpatient for much longer than I expected, but that's a story for another post, as this one is long enough already. In the mean time, you can get a sneak preview by taking a look at the timeline page that I recently added to my blog - It lists my treatment history, from the very beginning to the present day.


  1. James, you truly are an amazing man. With everything you have been through and going through now, you still manage to do your blog which is so helpful for others. I for one really appreciate your blog and information that you provide for other patients. (and you know I like the graphic photos which explains things some times a lot better than words!!). Hang in there....


  2. James, you are an inspiration to us all. Despite what you are going through, you still take time to help others and for that we are truely grateful. Wishing you all the best as you enter yet another stage in your dealings with Hodgkins. Angela D