Monday 1 September 2014

Sidelining cancer!

Given that a PET-CT scan had just confirmed that my Hodgkin's Lymphoma had relapsed, you might be asking yourself what spanner could I possibly throw in the works that would put cancer on the sideline. To answer that question I need to rewind time by a few months, back to the day that I tried to lift something out of a cupboard, only to find that it was jammed-in, and in the process hurt my back. At the time I never gave it much thought, as back injuries are nothing unusual, but with the wisdom of hindsight I can now see that it was perhaps the first sign of the problems to come.

Over the weeks that followed my back felt like it recovered a couple of times, but then I'd somehow manage to upset it again. Generally speaking, the pain wasn't too bad though, so the assumption was that it would get better with time. However, what did prove somewhat problematic was that I also had a cough; Likely due to the Influenza A that my immune system was struggling to eradicate. If you've ever had a back injury and a cough at the same time, you'll know that the two don't go well together.

For a while, I did my best to only cough when my back was supported, e.g. when sat in a chair, as the level of pain was much less that way. However, as much as I tried, sometimes I couldn't hold the cough in for long enough to ensure that the pain was minimal. There were a couple of particularly memorable occasions when I coughed and triggered an intense pain like nothing I've ever experienced before in my life; The pain would only start to subside when I took the weight off my back too, hence I quickly needed to somehow support myself with my arms before I collapsed in a heap.

One time, I grabbed hold of a door handle, all tensed-up and hardly able to breath, and froze there for what seemed like an eternity, until the pain eventually dropped enough that I could gradually start to relax and let go. The other time, I fell backwards on to my bed, yelled-out uncontrollably, rolled on to my side, and didn't dare move for about ten minutes. For the latter, I remember my back suddenly feeling hot, before the sensation faded and spread-out across my body, leaving most of me literally wet to the touch.

There had been an attempt to treat the Influenza A with Tamiflu, in the hope that it might ease the cough and allow my back to heal, but it didn't seem to help at all; If anything, it actually added to my symptoms. However, since having the Allogeneic Stem Cell Transplant, blood tests have shown that my lymphocytes have been fairly low, which is perhaps why I've picked-up a few viruses, hence the dose of my anti-viral medication was doubled; The lymphocytes in our immune system provide the main defence against viruses. It may have been coincidence, but after a few days of the increased dose of anti-viral medication I was coughing much less frequently.

Unfortunately, whilst not coughing as much certainly helped, the intense back pain could also be triggered by certain movements. For example, a couple of days before I got the PET-CT scan results, I was sat down, feeling fine, but then I bent-over to pick something up, and the pain I felt was excruciating. It was likely that incident that led to me being admitted into hospital a few days later, as afterwards trying to manage the pain using Oramorph alone simply wasn't working-out. The decision was made quite unexpectedly, because whilst I was on the phone with the hospital that day, it became clear to the nurse, just from my voice and the pauses in conversation, that sometimes I was struggling to speak, because the pain was quite literally taking my breath away.

On the day that I was admitted into hospital, I should have been starting my fifteenth ECP treatment, but it had been put on-hold whilst a treatment plan was determined for my Hodgkin's Lymphoma; I'd just started a five day course of high-dose steroids too, which meant that the ECP treatment was redundant in the short-term anyway, as we already knew that steroids were an effective way of treating my skin GVHD. Very little else actually happened that day, as I was pretty much pain free when sat in bed, and it was early evening when I got there, hence most of the doctors had gone home.

By the next day, the doctors at my local hospital had discussed potential treatments, and decided that Vinblastine chemotherapy was my best option. Given that I was now an inpatient, the plan was to start that treatment in the afternoon, whilst also adjusting my pain medication. However, the Vinblastine chemotherapy was delayed by a day, as I wanted to ask the doctors in Sheffield for their opinion, as they had managed my care for the last year and a half, hence it seemed sensible to see if they had any different ideas, given their expertise with Allogeneic Stem Cell Transplants etc. As it happened, they were happy to go with the Vinblastine chemotherapy, as it's difficult to say which of the potential treatments would be best, due to insufficient evidence. (I'll write more about the potential treatments, and the difficulties in choosing, in a separate post.)

Over the next few days or so, it was mostly a case of observing me to see how I got on, whilst tweaking my pain medication accordingly. It wasn't easy to decide how to proceed though, as there was no way to know whether any changes in my condition were a result of the high-dose steroids, chemotherapy, and/or pain medications. Also, given that I could be pain free one second, and in agony the next, it was difficult to know whether I was improving, without potentially causing myself quite a lot of pain. Fortunately, even though the days can feel long when you're just being observed, my local hospital provides a relaxing environment; This was the view from my room:

Cottingham - Hospital Room - View (Left)
Cottingham - Hospital Room - View (Right)

As you might imagine, the potential for severe spikes in pain meant that I was a bit weary of moving around. However, sometimes you don't really have any choice; For example, on one occasion, after going to toilet, I went to press the button to flush it and that triggered a horrendous pain. I quickly grabbed hold of some nearby handrails to hold myself up with my arms, thereby relieving some of the pain, but I couldn't let go without it returning. Clearly, I couldn't stay there either; I had to somehow call for help.

Of course, the problem was how to call for help, as even if I was able to shout, I doubt anyone would have heard me, so that only left setting the buzzer off to call for a nurse. There happened to be a button to do that next to the toilet, hence it looked like my best option. It took me about five minutes, and far more pain than I would have liked, to get sat down on the toilet, where I was finally able to reach the button, and even then I still had to support myself with my arms, hence I struggled to actually press it. Fortunately, it wasn't long before a nurse arrived, and I could take some additional pain relief; Once it had kicked-in, I made my way back to my bed, with the help of a zimmer frame.

After that experience, I wasn't going to try walking anywhere without first calling for a nurse, just in case I needed help. However, even that didn't work out very well, as the first time that I tried it, I only managed a couple of steps before the pain kicked-in, I yelled-out uncontrollably, and both the nurse and myself found ourselves stuck. I was holding myself up with the help of a cupboard on my right, and the nurse on my left. Consequently, the nurse was unable to call for help, much like I had been previously. Without really thinking, I just stumbled backwards towards the bed and sat down, albeit not very elegantly. The nurse then shot-off to get some pain relief and colleagues to help. I think I scared the poor nurse to death; Even though I had tried to explain what might happen, I don't think I'd quite managed to describe the extent of the problem.

Given the ongoing issues that I was having with the back pain, despite the steroids, chemotherapy and pain relief, the doctors decided that I needed an MRI scan of my spine to see whether that highlighted any potential causes. I wasn't exactly thrilled with the idea, as my last PET-CT scan had been quite an unpleasant experience, due to the back pain, and I'd only got worse since then. However, there wasn't really an alternative, and it did mean that I would finally find out what an MRI scan is like. (I'll write about MRI scanners, and my experience of being in one, in a separate post.)

By the time I had the MRI scan, I'd been in hospital for a week, and during that time there had been a couple of theories about the cause of my back pain: The Hodgkin's Lymphoma could have spread to my spine, or the steroids I'd been taking might have weakened my bones, thereby making it easy to damage them. After much debate, and specialists getting involved, the results of my recent scans led to the conclusion that I had compression fractures on seven vertebrae in my lower back (T11-T12 and L1-L5).

Note: The CT scan didn't show anything of interest, the PET-CT scan showed some activity on one of my vertebrae (T11), and the MRI scan showed that seven vertebrae were crumbling at the top and bottom. Although CT and PET-CT scans are not very good for identifying these kind of issues, it appeared that as time was progressing, I'd been causing more damage. Therefore, the plan was to have a procedure known as a multi-level Vertobroplasty, in order to strengthen the damaged vertebrae and in doing so relieve the pain. (I'll write about the multi-level Vertobroplasty in a separate post.)

For various reasons, it was just over two weeks after the MRI scan before I actually went for the multi-level Vertobroplasty, during which time I was pretty much stuck in my hospital bed, as it wasn't safe for me to walk around. I did occasionally slide on to a wheelchair, so that I could go to the bathroom to get washed etc. A physiotherapist also came to see me on most days, so that I could try to walk a few steps with the help of a zimmer frame. However, sometimes I wasn't well enough, either because I'd upset my back from getting washed etc, or because the day after the MRI scan I'd picked-up an infection, and needed IV antibiotics for a week to help to clear it up.

Note: The sudden change in my mobility made me realise how much I'd always taken the ability to perform even the simplest of tasks for granted, e.g. picking-up things that I'd dropped on the floor or reaching for things on high shelves, hence being dependent on others for such tasks was definitely an adjustment. I know that I soon acquired a newfound respect for those that are unable to walk; It's quite surprising in how many ways all sorts of things are not designed with that thought in mind. For example, I even struggled to get out of a hospital bathroom one day, as the door was pretty heavy/stiff, and that made it difficult to push open when sat in a wheelchair (with a bad back).

Fortunately, the multi-level Vertebroplasty made a huge difference to the back pain, but as you might imagine the procedure itself required some recovery time, which meant that it wasn't until five days later (making it a four week long stay) that I was finally able to go home. Having said that, it was my circumstances that influenced the recovery time, as after spending so many days in a hospital bed, I'd lost a lot of my strength; My legs were so weak that I could barely walk. Also, the chemotherapy that I was having was causing me to be anemic, which meant that I was easily out-of-breath, hence anything remotely physical was just that bit harder. (As it happened, my second dose of the chemotherapy was a couple of days after the multi-level Vertebroplasty.)

In the couple of months that followed, the Vinblastine chemotherapy every two weeks (as an outpatient) was essentially my only treatment; I had my sixth dose just a few days ago. The Vinblastine chemotherapy has occasionally meant that I've needed blood transfusions, due to being anemic, and regular injections of Filgrastim (G-CSF) to boost my immune system, due to being neutropenic, but beyond that it has proven to be a fairly easy-going treatment. Having said that: I did pick-up an infection in late July, which meant spending a few days as an inpatient on IV antibiotics followed by a course of oral antibiotics at home; my hair has thinned even more; my peripheral sensory neuropathy (mostly numb/tingly/tender finger tips) has got a bit worse; and I've needed to add Movicol and Senna to my mini pharmacy due to constipation.

Note: Initially, in addition to the Vinblastine chemotherapy, the treatment plan also included periodic short courses of high-dose steroids. However, given that I was already taking steroids to help with controlling my skin GVHD, the decision was made to just increase my regular dose to 20mg/day instead; Prior to starting ECP, that dose proved to be just enough. (I did actually taper-down to my 10mg/day dose for a few days, with a couple of days at 25mg/day, before that decision was made though.)

Unfortunately, even though I've tolerated the Vinblastine chemotherapy fairly well, I've still struggled with my mobility, due to the need to regain my strength and ongoing issues with either back or hip pain, post the multi-level Vertebroplasty. It seems like the pain has been in different places to those strengthened though, once I'd had a bit of time to recover, and in the vast majority of cases hasn't been as bad. However, it has been somewhat of a bumpy road, and perhaps surprisingly continues to be more problematic than the cancer! (I even have various mobility aids in my house now!)

1 comment:

  1. James...I've said this before but man, you've been through a lot (and that is an under statement). Through it all you have managed to maintain your blog to help others and chronicle your experience. You are an amazing person.