Wednesday, 4 September 2013

A year in the life of a cancer patient

As you perhaps guessed from the title of this post, I thought that it might be interesting to look back over the treatment that I've had in the last year, as a way of remembering what the NHS has put my body through in the hope of finally eradicating those pesky Hodgkin's Lymphoma cells that seem to keep fighting their way back into my life.

Note: I should probably confess that it has actually been more like fifteen months since I found out about the latest relapse and restarted treatment, but it was just short of a year when I first started writing this post, and the title sounds more catchy as it is!

It was actually the sorting-out of my medications that started me thinking about the subject, as when being treated for cancer you seem to gradually build-up your own mini-pharmacy. In fact, after bringing home my latest prescription one day, my mini-pharmacy had reached capacity, so it was time for an annual stock-take to see whether anything had expired - I really needed to clear-up some free space. For your amusement, the following photo shows my mini-pharmacy at that time:


I think it's safe to say that the above nicely illustrates that taking a whole bunch of medication is a given for cancer patients. I'd hardly taken a tablet in my life, until I started with Hodgkin's Lymphoma four and a half years ago, and now I take that many every morning that with a glass of milk you could almost count them as breakfast.

Putting aside the medications that are mostly aimed at relieving the side effects of the cancer treatment, that still obviously leaves the actual cancer treatment itself, and in my case that's meant two sessions of the chemotherapy regimen known as IVE, five sessions of a new monoclonal antibody-drug conjugate that is only available on a compassionate use basis, the conditioning regimen known as FMC, and last but by no means least an Allogeneic Stem Cell Transplant (Allo-SCT). In other words, just to get my body ready for the Allo-SCT, I had numerous doses of five different chemotherapy drugs (Ifosfamide, Etoposide, Epirubicin, Fludarabine and Melphalan), a monoclonal antibody-drug conjugate (Brentuximab Vedotin) and a monoclonal antibody (Campath). In just under a week, I'll also be starting Extracorporeal Photopheresis (ECP) too, as it seems that I'm currently dependant on steroids to keep my skin GVHD under control!

The delightful cocktail of cancer medications and treatments has certainly done a number on my blood counts at various points, and that's led to the need for numerous red blood cell and platelet transfusions, as well as a whole range of other top-ups via IV, be that simply fluids when I've been struggling to drink enough or minerals etc when medications have prevented the absorption of sufficient quantities from my diet. (There's also been the occasional need for high protein and calorie drinks, when I've been battling loss of appetite or just struggling to keep my food down, and G-CSF injections to boost my immune system, when I've been most at risk of infection.)

Despite the best efforts of all the medications and processes aimed at preventing any bacterial, fungal and viral infections, I've still managed to pick-up eight different infections, four of which required being hospitalised for treatment. (I was also recently hospitalised for another suspected infection, but the blood tests never found anything.)

That nicely leads me on to the subject of testing, as being regularly zapped, swabbed, poked, sliced, and prodded are all things for which cancer patients get to look forward. I've long lost track of the number of cannula insertions, blood cultures/tests, stool/urine tests, MRSA and mouth swabs, and examinations that I've had, but if my memory is still serving me, I've had: two CT scans, three PET-CT scans, numerous x-rays, a Lineogram, three Echocardiograms, two Lung Function Tests, a Pericardial Drain, a Hickman Line insertion, two bone marrow biopsies, and two skin biopsies!

It light of all of that, it probably comes as no surprise that being a cancer patient means spending a lot of time in hospital. By my calculations, I've actually spent at least sixty-eight full days as an inpatient, which coincidentally is roughly the equivalent of the number hours involved in working a full-time job for a year. Granted, cancer patients do get to sleep whilst in hospital, despite what sometimes seems like the hospitals' best efforts to prevent it, but there's probably a few people out there that have managed to sneak-in the occasional daydream/snooze at work too!

In addition to the inpatient time, there's also all of the outpatient time, and that soon adds-up as well; With all of the appointments, clinics and treatments etc, it wouldn't surprise me if I've spent more time in hospital as an outpatient than I have as an inpatient. At this point, it's pretty much a hopeless exercise trying to put a number on how many hours I've spent waiting for tests to be done, results to come back, medical professionals to see me, treatments to be given, prescriptions to be dispensed, and paperwork to be completed; I've been back and forth that many times as an outpatient, for what have frequently proven to be long days, that it's mostly all just a big blur.

Finally, after considering all of the time as both an inpatient and outpatient, there's also the time that you get to spend outside of the hospital, where the various medications and treatments have left you feeling a mixture of exhausted, nauseous/sick and sore/in pain, amongst a variety of other unpleasantries. Occasionally, you do get to not look and feel like death warmed-up though, so don't get me wrong: It's not all bad!

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