Coming Through Non-Hodgkins Lymphoma.

Strange as it may seem I have never bothered to question the WHY of my Non Hodgkins Lymphoma (NHL). When I found out back in September of 2007 that I had NHL I never asked, “Why me?” This reflected my generally fatalistic attitude towards life. Cancer happens and, guess what, it was happening to me! I was one of the one in three who would be affected by the disease sometime in their life. Perhaps if I had been diagnosed with a condition that could, statistically at least, be linked to lifestyle or diet or smoking, I might have asked the question, “Why me?” and come up with a different answer.

Although the ‘WHY’ has never worried me, the ‘WHEN’ obsessed me and continues to do so. When on earth did it begin? When did I first become conscious that my energy levels were depleted? When did the hot bed- sweats begin (a classic symptom of NHL, apparently)? When did I lose control of my asthma? When did my breathing become so difficult and when did those lymph nodes in my neck start to bubble? Was it before or after that throat infection I had in July? When I interrogated my past in this way it began to make sense. With hindsight my hacking cough on our trip to SE Australia in February was not my asthma. My exhaustion after just a few hours in my workshop wasn’t old age. As for the night sweats, they had been going on for years. Had my condition been creeping up on me for that long? My God!

Only now, since I have been feeling better and told that I am in remission, do I fully appreciate the insidious way in which the NHL took over my body. I suppose I should be thankful there was no pain, but at least pain tells you there’s something amiss. There was no pain, but there was a slow and inexorable debilitation that I put down to ‘getting old’ (I’m 63) or a low level bug/virus of some sort. As for the ‘60 a day cough’, that was my asthma getting worse. I believed that because one of my GPs and then the Practice Nurse told me so. And who was I to doubt them? My great fear was that the asthma was exacerbated by my job, which involved working with wood. The thought of somebody telling me that I had to stop messing about with wood petrified me because it would mean changing my whole way of life. Eventually, my cough and difficulty in breathing became so acute that another GP sent me for a CT Scan. Literally a few days later I was being seen in the Respiratory Medicine Department at the City Hospital in Nottingham. Funnily enough the results of this scan both pleased and horrified me.

Pleased me because it was clear that the problem was not in my lungs, but in the pleura between my diaphragm and right lung. This was relief of the first order because it meant that my breathing problems were not caused by some external irritant. I could continue making my wooden stuff and continue selling it at craft shows all over the country.

And horrified me because the scan actually showed that I had a massive pleural effusion. Most of the space where my right lung should have been was occupied by fluid – a type of fluid formed in the lymphatic system. I was also informed that this fluid indicated an underlying condition – probably a lymphoma of some sort. What sort, though? That, it seems, would be determined by taking a sample. The pleasant young doctor aspirated a syringe full of fluid from my chest and arranged for me to return for the results a week later – a week that turned out to be the longest of my life! Apart from anxiety regarding the diagnosis, my overall condition deteriorated. I could barely breath, move about, talk or eat. For me one of the most distressing sensations I experienced during this period was that of the fluid in my pleura moving about inside my thoracic cavity when I turned over in bed. It felt as if I had an alien creature moving about inside my chest – shades of the movie!.

The diagnosis of Non-Hodgkins Lymphoma, a week later was almost a relief, partly because, at last, I knew what was wrong with me but mainly because I was a little nearer to getting rid of the fluid in my chest. A few days late I had a biopsy on a lymph node in my neck to determine the type of NHL from which I was suffering (there are, apparently, 20 or so different types!) A week later, I was admitted to the Haematology Centre at the City Hospital where, over the course of four days they drained seven litres of fluid from my chest (plus two more a fortnight later). This, I was informed later, was not a record for a pleural effusion, but I’m still pretty proud of it!

The first part of my week in hospital was spent with a drainage tube protruding from my back attached to a 2 litre flask, which I was able to carry around with me, even showering with it in in situ. I became quite attached to that flask! After four days I started the first of six, two-weekly, chemo sessions. Generally speaking I seem to have coped pretty well with my R-CHOP chemo regime. It’s been mostly low-level side effects; nausea during the first week, stomach and (unmentionable!) bowel problems during the second. Interestingly enough the side effects have lessened as each cycle has taken its course. I look forward, at the time of writing, to the day after tomorrow when, all being well, I will have my last chemo session. I say all being well because even at this stage I take nothing for granted. I will not be completely confident that I am in remission until I hear the results of my PET Scan in two weeks time. If that says I’m clear then…..hurray!

There have, of course, been highs and lows over the past three months. The high was during my time in hospital when my Doctor told me that I would come through the treatment and be stronger and fitter than I was before. It was so important to me to hear these positive words at such an early stage because they made me feel positive. The low was undoubtedly my first experience of Neupogen, a drug self-administered by injection, which stimulates the growth of white cells in the bone marrow. I was told that there might be some bone pain associated with these injections but not that it would be so excruciating! Fortunately the extreme pain only happened during the first few injections and not in subsequent ones.

My stay in the Haematology Centre of the City Hospital in Nottingham was also characterised by some intensive self-education regarding my condition – courtesy of Cancerbackup. It’s hard to exaggerate how important this process was because, I assume, much of the fear associated with cancer is derived from ignorance. The Cancerbackup booklet on NHL given to me by Faith, my Lymphoma Nurse, dispelled much of this ignorance. It presented me with the information I needed about NHL and its treatment in an accessible but non-patronising way. It must be extraordinarily difficult writing about such complex subject matter without talking down to the reader or, on the other hand, baffling them with science or irrelevant detail. I learnt later that all the writers of the myriad booklets on various conditions are practising cancer-nurses not professional writers. Extraordinary! When I returned home I spent many (I won’t say happy) hours exploring the Cancerbackup web site. This site is extremely easy to navigate, informative and, with the addition of the new What Now? Forum, refreshingly informal. I cannot begin to imagine how many hours of work have gone into the site’s design and realisation. Thank you, Cancerbackup, for playing your part in my transition from sickness to health and, literally, backing up the care and support I have had from Dr Andy Haynes and the Haematology staff in Toghill Ward and Out Patients at the City Hospital in Nottingham.

Ray Sylvester