PART ONE
Looking back, it’s obvious now that the first symptom was breathlessness and that I largely ignored it and simply put it down to the fact that I was getting older. It was, however, made very noticeable by the fact that most weeks I was playing 2 games of five-a-side, and one game of full 11-a –side football in the local Over 40s league. I considered myself a pretty-fit 54 year old.
The next sign was while we were on holiday in Florida at Easter 2006 when I was taken ill a few days before we were due to come home. I was sick as a dog, unable to keep anything down for 24 hours. We (my wife Hazel) put it down to the drink we’d had with friends the night before, but I was adamant that I hadn’t really had that much (honest). I recovered enough to travel home without incident, but I didn’t feel back to normal even the following week when I was back at work.
I wasn’t actually sick, but I felt queasy most of the time, so after a little (lot of) nagging from Hazel I went to the walk-in clinic and was examined by the Nurse Practitioner. He sounded my chest and back and suggested that there was some restriction on the right side and that I should consult my GP if the condition persisted. As it transpired, I had 3 litres of fluid pressing against my right lung, and it would probably have been more appropriate if he had said “Do not pass GO, do not collect £200, go directly to your GP and demand an x-ray”. Anyway, he didn’t, so I prevaricated for a few more weeks. I was still trying to play football, but even the shortest sprint (long sprints were a thing of the past) left me gasping for breath.
Eventually Hazel persuaded me (nagged me until I gave in) to go to the Well Man Clinic at the local surgery. Over the next 2 weeks ECG, lung capacity and blood tests established nothing, so the nurse suggested that I make an appointment with the GP. This took another week, and although there was some slight worry in the back of our minds, we didn’t realise that it was to be our last week of “normality”.
It was 8.30 am on a sunny Friday morning in May 2006 when I walked in to see the GP, convinced that I had some minor problem he would sort out pretty quickly. He listened to my story, sounded my chest and back, and then telephoned the hospital (do not pass GO, do not collect £200) to book me an immediate x-ray. He insisted that the hospital were to get the results to him that afternoon and that I was to telephone him around 5pm.
We were told that the x-ray showed a lot of fluid, and that, as a priority, I would be contacted with an appointment to see a chest consultant within the next 2 weeks. As we were now taking this very seriously and didn’t want the uncertainty of waiting a few more weeks, we decided to go private and got an appointment at the local BUPA hospital for Monday evening.
Over the weekend we overworked Google on “pleural effusions” and having read up on the many possible causes, we were praying for something trivial like a leaky heart valve (what’s a little heart op that will cure you completely?).
Monday evening came and we saw the consultant (I’m still with the same one despite opting to switch back to National Health). He took a full history and established that mesothelioma was a possibility as, at 19 I’d worked briefly at a place connected with asbestos. I got an early appointment at his NHS clinic and was in hospital within the week for a chest drain.
The ward was the standard 6-bed set-up with the curtains to pull around each bed. It never ceases to amaze me that highly intelligent doctors pull the curtain round and then start discussing your condition as if it were soundproof. And don’t get me started on smell-proof. I vowed that I’d make it to the toilet, come what may, after they brought the commode for the guy in the next bed. Perhaps I should have stayed with BUPA and got a room to myself.
The day after I was admitted, along came the registrar to insert the drain and carry out a blind biopsy (yank out bits of tissue) while he was poking around in there. Silly me, I thought we’d go, if not to an operating theatre, at least to some sort of (sterile?) treatment room. No need says the registrar, put one of your pillows on the wheeled tray-table and lean over the bed resting your head on the pillow. He then gave me a local anaesthetic and carried out the procedure.
The drain part wasn’t too bad, but after about 10 minutes of feeling like he was tearing out bits of lung with a pair of pliers, I came out in a cold sweat and told him I was going to be sick. Fortunately, he said he probably had enough and finished off. It was a pretty harrowing experience, but at least he had pulled the curtain round so the rest of the ward was soundproofed from my screams. The biopsy was inconclusive so my advice to anyone offered the same procedure would be to ask the doctor if it’s really necessary, and if so, is there a less barbaric way of carrying it out.
I carried the drain bottle around for a couple of days while they waited for results and then the consultant came in on morning rounds. Obviously sensitive to my predicament, he didn’t bother pulling the curtain round, but said that he had some test results, and would I like to telephone my wife to come in before he told me! (Duh! So it’s going to be good news then). I said there was no point in putting it off, so (ever sensitive) he took me across to Sister’s office where he told me that tests on the fluid had established the presence of malignant cells, i.e. YOU HAVE CANCER. I was discharged and had to wait another week before attending the out-patients clinic to be told that further tests on the fluid confirmed that it was mesothelioma.
From there the system just appeared to click into place. The Macmillan nurse ran through all the help available and actually filled in some of the forms for benefits etc. The chest consultant gave me the option of submitting for the MARS program (radical surgery) or chemotherapy (alimta), but made it clear that their feeling (the inter-disciplinary team including the oncologist) was strongly in favour of chemotherapy. I was given the weekend to decide and spent it googling the options. I found that a Dr Sugarbaker in America was the biggest advocate of surgery (to remove the lung, pleura and diaphragm) to treat mesothelioma, but when you take into account that he will only treat the relatively young and fit, his statistics were skewed, and overall, no better than those for chemotherapy. I therefore opted for chemotherapy and was scheduled for my first session a week later.
The course consisted of 6 sessions at 3-weekly intervals. We were told to expect some side effects, but that hair falling out was not a common one. Typical, as mine had gone quite a few years earlier I could have coped with that. I wouldn’t say that I sailed through chemo, but I could only describe the side effects as mild to moderate. I was only actually sick once, but certainly for days after treatment the queasiness was quite strong despite ondansetron for the first few days, followed by metaclopramide and cyclizine afterwards.
There was also the metallic taste in the mouth for which the consultant recommended boiled sweets. These worked great for me until I went for my regular dental check-up and had to confess to my dentist. His advice contradicted the oncologist, so if you get that awful taste in your mouth, go for sugar-free gum as it’s better for your teeth. With my taste-buds whacked, I actually went off my occasional pint of lager at the pub with the lads, and had to switch to cider instead (no great hardship). I also stopped enjoying the odd whisky nightcap, and believe me, Horlicks is a poor substitute.
The sixth session was in November 2006, and the follow-up x-ray and CT scan showed almost clear. I was in remission and regained some degree of fitness, even managing to play 5-a-side again.
PART TWO
2007 was a pretty good year with only quarterly check-ups and x-rays, and I was certainly well enough to make arrangements to spend New Year at our apartment in Spain. We travelled out on New Years Eve and enjoyed the festivities at a local restaurant. We didn’t stay out too late and I felt OK when I went to bed, but a few hours later I had to rush to the bathroom to be sick. We (my wife Hazel) put it down to the drink I’d had the night before, but I was adamant that I hadn’t really had that much (Yes, I can see that there’s a pattern emerging, but I still blame it on the fluid).
I was pretty ropey for the rest of our stay, but made it home without any problems and booked an early appointment at the chest clinic. The x-ray showed a big build up of fluid and there was some discussion as to the next step. It was agreed that I should have a pleurodesis, where the lung is stuck to the chest wall, thereby removing the cavity for fluid to gather in. Apparently this is done by sprinkling talc into the cavity and this “glues” the lung to the chest wall.
I wanted to ask why they didn’t use superglue, and how they established that talc was the perfect substance (it wasn’t, ‘cos it didn’t work), but I didn’t like to. I knew superglue stuck to flesh (finger to thumb, finger to nose etc.) but I wouldn’t have dreamed of talc. Was it a strange day in the operating theatre when the surgeon asked the nurse to sprinkle some talc on his hands before pulling on the rubber gloves? Did some of it spill into an open chest cavity and start sticking to everything? Eureka! Do they use Johnson’s or Boots own brand? So many questions.
Anyway, I was to be referred to the Freeman hospital as the Sunderland Royal doesn’t carry out this procedure. I would be notified in due course. 6 weeks later and I’m feeling pretty rough and breathless most of the time so we start chasing up the Freeman. A few phone calls from ourselves and from the Macmillan nurse eventually pay off and the consultant surgeon “gives in” and makes me an appointment. How kind of him.
The day arrives and I make my way up the lift and along the corridor to the designated ward. I introduce myself to the nurse only to find that the consultant surgeon is standing alongside me. He recognises my name, turns to me and says, “Well, you’re not as bad as I expected”. Because I didn’t crawl along the corridor on hands and knees, I obviously wasn’t worthy of his attentions. This was borne out later that day when he decided that he could no longer fit me in and discharged me! He would see if one of his assistants could possibly accommodate me on their lists the following week. It wasn’t a total disaster as it was Mesothelioma Action Day so I made my way straight to Gateshead Civic Centre and caught the afternoon activities. All very interesting and informative.
I did get a call to be seen by another surgeon at the Freeman, and the pleurodesis was eventually carried out by him, or in fact by his young apprentice (registrar). Either way, it was a failure which has left pockets to fill up with fluid. To add insult to injury, while I was in the High Dependency Unit, I had another brush with the consultant surgeon. I was just conscious after returning from theatre, still connected up to the morphine on demand (and pressing it every few seconds, ‘cos it feels sooo good) when I see him checking one of his patients in the opposite bed.
I’d obviously upset him more than any normal person could possibly imagine (simply by pushing to be treated sooner rather than later) because he came across and said “Are you satisfied now that you’ve had your operation?” What was that supposed to mean? I would have liked to have got up and hit him, but I was incapable of standing up, let alone anything else. When I later told the Macmillan Nurse, she said that I should make a formal complaint, but I didn’t see any point when there were no independent witnesses.
I should probably make it clear that the vast majority of healthcare professionals I’ve come into contact with have been brilliant, but it only takes one bad one to tarnish their reputation. He not only let me down, but also himself and his colleagues. When I think of what other procedures more professional doctors and nurses have had to carry out and still were able to manage a smile and a joke, it puts this guy to shame.
As this is meant to be helpful to anyone facing similar treatments, I should maybe point out some of the less dignified procedures I had to endure. It appears that general anaesthetics (and morphine on demand) have a tendency to slow down or stop the plumbing department. This is very uncomfortable and somewhat embarrassing for the patient, but spare a thought for the doctors and nurses who administer the relevant remedies! (If you haven’t worked out what they are, you’re in for a rude awakening).
So at this point, unaware that the operation had failed, I began to feel better again as the fluid had been removed and the symptoms eased. Let’s hope it lasts.
PART THREE
It didn’t last very long at all. Within a couple of months (July 2008) I was feeling ropey again, queasy most of the time, and breathless going up the stairs. Sue, our MacMillan nurse, fixed up an appointment with the chest consultant within days, and sure enough, the x-ray showed another big build-up of fluid. The options were discussed, but strangely another try at pleurodesis wasn’t one of them. Apparently, once it’s been done, they can’t go in and have another go. There was talk of some other procedures to dispose of the fluid, one of which I think was a tap under the armpit (or did I just dream that?).
Anyway, in the meantime I needed rid of some fluid, so they would do it by needle. Apparently, up to 2 litres can be removed by this method and it can be done in out-patients, saving me from another spell on the ward. I’ve since seen this done in an episode of ER and I’ve got to say that it looks preferable to the full thoracostomy (chest drain), despite the needle being the size of a bicycle pump and reminding me of those seen used by TV vets when sedating elephants.
Anyway, I was taken to a treatment room where 2 young registrars hovered round me with stethoscopes, listening carefully to try to establish where to insert the needle. After about 10 minutes they explained that they didn’t want to try as the pleurodesis must have caused pockets which were making their soundings inconclusive. The consultant was called and he confirmed their findings by using a portable ultra-sound scanner. He decided, in the circumstances, that I should be admitted the next day and he would carry out a normal chest drain. Oh great!
I presented myself at the ward at 10am the following day (Friday) as instructed, but had to wait in the day room for about an hour as the bed wasn’t ready. I was eventually led to one of the 6-bed bays and allocated one in the corner nearest the door. It’s strange how little things like this matter, but with 2 rows of 3 beds the 2 nearest the door are the best because a) the beds nearest the window get the draught when someone insists on some “fresh (cold) air”, and b) the beds in the middle have twice the chance of the commode being brought for one of your neighbours.
I’m getting settled in when one of the nurses comes round to check my details etc. and in the course of our chat it becomes apparent that the doctor has done his rounds for the day and nothing will happen until Monday. Now, as much as I appreciate the NHS, the idea of spending 3 unnecessary nights in hospital did not amuse me, but when I asked why I was brought in I was told that it was a case of being admitted when a bed became available.
I hope I didn’t make too much of a fuss but one way or another I was granted “weekend leave” and allowed to go home on the understanding that I would report back on Monday morning. Although I’d only just acquainted myself with my fellow inmates half an hour earlier there were some jokey comments from them as I was packing my bag, but I assured them that I’d be back on Monday with Red Cross parcels and that I’d help them to organise an escape committee.
Monday morning, I’m sitting on the bed reading when the consultant comes in to do his rounds. He looks at me, does a double take and says “What are you doing here?” He’d forgotten that he’d seen me four days earlier and decided to admit me. We think that we are special cases with our very special disease, but we forget that unfortunately, our doctors see far too many similar cases.
It all comes back to him, with a little help from Sue, the MacMillan nurse, and he returns after rounds to insert the chest drain. Again, he uses the portable ultra-sound scanner to establish where the fluid is, and carries out the procedure without too much pain. As the fluid starts to drain into the bottle he asks me if I experienced a cough when this was done previously. I’d no sooner said “No” when I started coughing violently and couldn’t stop. They put the oxygen mask on me and this helped the coughing subside in a couple of minutes, but it still came as a shock. I could have done with being warned just a little bit sooner! Whilst I was coughing and spluttering he explained that the build-up of fluid puts pressure on the internal organs, particularly the heart, lungs and diaphragm, and pushes them out of place. When the fluid is removed the organs move back into position and this causes the coughing.
Once again, the removal of the fluid eased the symptoms and I began to feel better pretty quickly. I consider myself fortunate that I was able to retire soon after diagnosis, so I’ve been able to enjoy the long periods between the treatments I’ve described, simply enjoying life. My main ongoing symptoms are tiredness (I often have to drag myself out of bed) and feeling queasy (for which I take metaclopramide). I do get the odd ache and twinge on my right side that I put down to the tumours, but I count myself lucky that that’s about as bad as it gets. I also get breathless if I exert myself at all, so I don’t (my wife will confirm this).
Obviously, I’ve had to hang up my football boots (some of my team-mates suggested that I should have done so earlier – cheeky devils) and I’m now involved in the management of the team I used to play for. This means that I can usually be found on Saturday mornings standing at the side of a muddy pitch yelling encouragement (obscenities) at various team members. In fact, we play our home games on the pitch across the road from Freeman Road Hospital and I actually watched one of our games from the ward after I’d had the pleurodesis.
Being retired also allows us to make good use of our apartment in Spain. We can be very flexible with our dates and usually manage to get cheap fares, enabling us to visit 4 or 5 times a year. When we’re not in Spain, we’re pretty keen racegoers and probably attend a local meeting every few weeks in the summer months.
I study the form (and like to think I know a bit about it) and Hazel likes to see the horses in the parade ring and backs the one that whinnies (or does its business) as it goes past her. An analysis of our returns would probably show that her method is at least as good as mine. All in all, life is good and we’re enjoying it. We know that there will be another hurdle along soon, but we’ll deal with that and keep going for as long as possible.
