The Last Post?

It's been more than a few weeks since Caracas,which went pretty well. The stage was big and I was able to control the sound levels on my side of the stage. Moving Rothers to the opposite side from me helped too. My hearing is not what it was but I can live with it. Hopefully the sounds I'm making for the new album sound as good to you as they do to me,

Two weeks ago I went into hospital for the biopsy which involved drilling a hole through the back of my nose into the bone in the centre of my head below my brain. Today I received the letter with the results. Apparently, the consultant had trouble taking a sample of the bone because it was so hard. I should have warned him I'm Irish and he would need to use a diamond tipped drill.. Although the lab couldn't offer a complete diagnosis they are pretty confident that whatever it is it's not nasty and it's unlikely to cause me any problems. I have to go back for a repeat scan in November, presumably to make sure it isn't getting bigger and that's it.
Not the total all clear that I was hoping for but as good as. I'm going to celebrate! Well I would if we didn't have so much work to do on this album before we start rehearsals for the US tour. It's coming up fast. I'm sure it will be a total blast too.

thank you for reading and see you somewhere soon.

Mark

20th March 2012

It's been over a month since my last post. I know some people have been wondering what's happening with my hearing and why I'm not writing about it. Well, the short answer is - not a lot, and I'm getting sick of talking about it if I'm honest.  Since I was last here in blogland I had the follow-up MRI scan that I was waiting for. When I arrived at the hospital they told me to go out into the car park to the temporary scanner  parked there. Their regular scanner was broken and would be out of action for a few weeks. I’m not surprised, I thought to myself, remembering the bloody racket it made. This time I was prepared and brought my ear plugs. Unbelievably this one made even more noise.  It sounded like it was coming apart in a final grinding, clanking, banging hurrah. Are they really meant to make so much noise? I know it’s all very exciting cutting edge technology, with super cooled, superconducting magnets that make it all possible but you don’t expect such cool (excuse the pun) machinery to sound like something from a Victorian steel mill. This time they had me in there for nearly an hour and to my surprise I fell asleep for some of the time. I then had a few minutes in the CT scanner, a far more civilized affair. I had my metal belongings returned to me and was told I would hear from the consultant in due course.

About a week later I had an email from the consultant. What followed was one of the worst afternoons of my life. The email informed me that I had “bone disease” in the base of my skull that may require surgery. It sounded quite scary. Bone disease = bone cancer to me. Base of the skull? What’s that? After a few minutes on the internet I found out that the base of the skull is the bit that stops your brains from getting mixed up with the rest of the stuff in your head. I also found out that parts of it can be difficult, if not impossible to get to should surgery be necessary. I told Angie what I had found out and she just stared at me in disbelief. I think that she, like me was having trouble taking it in. I wrote back to the consultant and said that I was a little worried (so reserved, don't you think so?) and could we have a chat on the phone because I have a few questions like “Should I be getting my affairs in order?”

I spent the next few hours scaring myself some more by reading all about skull base disease. Did you know there are doctors that have clubs dedicated to a common interest in the skull base? Sounds like a great laugh.

About three hours after the first email, another arrives reassuring me that I shouldn’t worry. He’d shown my scans to a few of his mates with more experience of head bones and they both though it was a benign fibrous ossification and I should come in for a chat. I wasn’t sure I liked the sound of that either but was feeling better about the state of my head.

This morning I went to see the bone specialist to discuss the scans in person. He showed me the insides of my head which I found fascinating, but even I with an untrained eye could see the thing that was causing concern. It is situated almost at the center of my head, at about eye level and in front of the cerebellum. I would estimate it to be about 3-4cm across. I took a picture of the screen so you can see for yourself.

X marks the spot!

We discussed the options which were:

1)      Do nothing.

2)      Do nothing for the time being but keep coming back of scans to make sure it isn’t growing

3)      Perform a biopsy and find out what it is.

I asked him “what would you do?” He replied without hesitation “have a biopsy” I’m waiting for the appointment so he can drill a hole into my head, entering through my nose, to take a small sample of the offending tissue/bone.

What has become clear is that my “benign fibrous ossification” (if that’s what it is) is nowhere near my left ear and probably has nothing to do with my hearing loss.  It’s a bit like when you take your car to the garage because the air conditioning has stopped working and they call you to say it needs a new gearbox as well.

My hearing has stopped improving and the tinnitus is still a problem when it’s noisy but I’m learning to live with it. After pulling out of the DeeExpus shows in April, I thought my first gig with Marillion wouldn’t be until June but unfortunately that's no longer true. We are going to play in Caracas on April the 12^th. That should be interesting in more ways than one. I’ll let you know how I got on in a few weeks time.

Sunday 12th Feb

It's been over a week since my last update and that's because there hasn't really been much to report. Actually, one really good thing is my tuning has returned to normal. My left ear and right ear are in tune. It's something I've always taken for granted in the past, but I won't from now on. I did a hearing test a few days ago and my hearing is normal up to around 1 KHz. After that it drops sharply to nothing. Not great but so much better than no hearing. The biggest challenge I face will be playing live gigs because I am still very sensitive to loud noise. It makes the tinnitus much worse and can be physically painful at levels I found comfortable prior to the SSHL. Fortunately, Marillion don't have any gigs until June when we are touring the USA and Canada. That's over four months away and I'm hoping that my sensitivity to loud noise will decrease. These days when we perform at gigs we all wear in-ear monitors to hear what's going on during the show. Prior to the invention of these systems every band used monitoring systems that consisted of individual floor speakers for each band member. In the case of Marillion we had2 each for stereo and Ian had the equivalent of a huge PA system positioned behind his drum kit. The overall effect of this was a sonic arms race where we got louder and louder in an effort to hear ourselves better over the noise coming from the rest of the stage. In the immortal words of Ian Gillan, we tried to make "Everything louder than everything else" In-ear monitors block out a lot of external sound so they don't have to be as loud to be heard. Also, as there are less speakers on stage the overall noise level is much less to begin with. Of course, certain things can’t be quieter. A drum kit is a noisy piece of equipment and drummers like to bash fuck out of their kit. I wouldn’t have it any other way. Guitarists need loud amplifiers to excite the strings on their guitars. This creates a feedback loop causing the notes to sustain longer than they would naturally. Essential if you want that Steve Rothery sound. My aim when we next go out on tour will be to position myself as far as possible away from Steve R and Ian while still being on the same stage, so expect to see a change to our usual positions. It's about time we had a different look anyway.

Some of you may be aware that I am also playing keys with DeeExpus, and we have a new album "King of Number 33" out now on Racket Records and in the shops on Edel Music next month (shameless plug over)There are 3 UK shows planned for April and one in the USA in May. I have decided to not do these gigs with the band. I'm very concerned that because DeeExpus don't use in-ear monitors and the stages will be a lot smaller compared to the Marillion gigs that overall sound levels will be unmanageable for me. Also, in order to prepare properly for these gigs I would need to start rehearsals with DeeExpus soon. I suspect that sound levels in rehearsals will be similar to the onstage levels. I'd like to leave it for a few more months before exposing my ears to that sort of punishment.

I really enjoyed working on "King of Number 33"and have no intention of quitting the band. I'm looking forward to starting work with Andy (Ditchfield) on the follow up at some point and sincerely hope that I will be able to join the band onstage at some future date. I will have a better idea of when that might be after a few more months have passed and hopefully my sensitivity to loud noise and tinnitus has reduced further. Also, how it goes with Marillion in the USA will give me a better idea of what’s possible.

I'm still waiting for the follow up MRI scan. Despite chasing the consultant and the hospital I'm still without an appointment. Clearly going private doesn’t guarantee immunity from waiting lists or incompetence. I'm not the worrying sort but I would like to put the possibility that my hearing loss was caused by something abnormal in my brain behind me.

Wednesday 1st Feb

I started running a few days ago after a long break. Marathons can really put you off running. Also, I was having trouble with my knees whenever I ran so I've been running in these odd looking shoes called Vibram Five Fingers. Angie calls them my monkey feet. They help you run properly which avoids impact stress to the knees. This morning I ran down by the river. It was cold but really enjoyable. We started at 11am in the studio. I was feeling done in by 5:30 and asked Mike if it was OK to have a break. My ears combined with much less sleep than I'm used to are taking their toll. The music is progressing and sounding really good so no complaints there. I got my scan results back. The consultant said that my inner ear and related nerves all looked fine but there was something else he was concerned about. It may be something or nothing but I would need a different type of scan to be sure it was nothing and not something. I hope it's nothing. Some people have expressed concern that we may have to cancel some gigs. Please don't worry about that. Our first gig is months away and my rate of recovery has been great up until now. This time last week I was stone deaf in my left ear. Today, I couldn't answer the phone with my left ear but I'm sure I could do a gig tomorrow if I had to. I'm in bed early and I've taken a Nytol to help me sleep. I hate taking anything to aid sleep because it's a slippery slope but it's been a week now since I've had a decent nights sleep and i need one.

Tuesday 31st Jan

Tuesday was fairly uneventful from the point of view of my hearing. I decided against carrying out my early morning hearing test. The incremental improvements have been getting less each day and I didn't want to start the day with the disappointment of no detectable improvement. I'll give it a few days before another test. We worked on a song that lyrically is to do with Montreal. I won't go into any detail, that's for Mr h to do when he's ready. I'm enjoying working with the guys at Real World, who wouldn't? It's a fantastic environment in which to create music. I've been taking a few breaks here and there when I feel that the sound pressure is getting too much. We tend to spend as much time discussing what we are going to do as actually doing it so there's plenty of "ear down time" By coincidence, BBC Radio 4's "Book of the Week" this week is by Nick Coleman, the journalist with SSHL that I mentioned a few days ago. He talks about hearing loss and his love of music. There's a lot of it about. It's like the Blue Car Effect; you don't notice how many blue cars there are around until you buy one yourself. It sounds like the tuning discrepancy between my ears is improving today but I've noticed a new effect that could become annoying. Every time I turn my head to the right I hear a sound like a zipper in my left ear. Zipppp! Turn to the left, silence (if you ignore the sound of escaping steam and dentists drills) Turn right, zipppp... Every time. Ho hum.

Monday 30 Jan

Today I am booked in for an MRI scan and some blood tests. I've no idea what the blood tests are for but I just hope they don't show up anything nasty. I've never been in an MRI scanner before and was unprepared for the amount of noise they make. Jesus! I was made to remove all my metal face furniture because of the powerful magnets involved and was told to lie down on the bench in preparation before being squeezed into the white tube. There's not a lot of space in there and that 20 minute scan felt like a very long twenty minutes. Angie waited outside. She has been absolutely brilliant throughout all this. I have always, wrongly imagined that she would get quite impatient around me if I was ill or incapacitated in some way. Maybe I just had the wrong things wrong with me in the past. Isn't man-flu a serious illness? Anyway, she has been a total rock. In fact, at times it feels like she's being over protective and pampering to the point where I want to say stop worrying about me, I'm fine. The great thing is that she gets how important my hearing is to me and actually so do I now. In the words of Joni "we don't know what we've got til it's gone" Scanned and 6 test tubes of blood lighter I set off for Box near Bath to meet up with the band and Mike for the first time since my hearing loss. They are all very nice and listen to my story before we start work by going to have lunch. It's the Marillion way.... Part of my research the previous week was into earplugs. You name em, I've now got a few pairs of them. And the winners are.... Hearos... by a country mile. I knew they were going to be essential in blocking the out of tune mess that my left ear currently calls hearing. The afternoon was ok, we worked on some arrangements quietly, which I could cope fine with. Later, after dinner we jammed, sometimes loudly which was more of a challenge. My tinnitus gets louder in response to loud music even with an earplug in my left ear. It's obviously a brain thing.

Sunday 29th Jan

Over the next few days more of my hearing gradually returned. I started to conduct my own hearing tests early each morning to track my progress. It's amazing what resources you can find online. Each morning before anyone else in the house was awake, I would creep downstairs excitedly to check if there had been any improvement in the night. I indulged my inner geek and created a graph using Excel to track my progress. Each small daily improvement gave me hope that I might one day regain something approaching normal hearing in my left ear. There was still one big problem with my newly returned hearing, well three actually. First, it was badly distorted, second, it was badly out of tune with my right ear and finally it was somehow spatially disconnected from what I was hearing in my right ear. Fascinating and disturbing at the same time. As the lower frequencies started to return I detected that they were behaving themselves better that the mid to higher frequencies. I had no real high frequencies to speak of. The upshot of all this was that whenever our kids spoke, or even worse shouted, it went right through me in a way that chilled the blood. I love our three kids dearly but I was wearing an earplug in my left ear for most of the weekend just to avoid going insane. Jude (4) acquired a new word from his sister Tallulah (10) and kept shouting it out, feeling very pleased with himself. Penis! penis! penis! "Do you know what that means daddy?" Thanks Tallulah. It could have been worse I suppose..