Never one to trust the medical profession to diagnose and treat what essentially I can feel and may in some way give a partially accurate description of my symptoms, which may or may not lead on to a correct treatment, my medical file is notably thin. Or should I say occupies probably no more than this page size for my 40 year plus existence on this particular planet.
"Hello, I have two problems, one is my sickness and associated pain, other thing is I have pain down my right leg and wake with pain from it". "You have 10 minutes we will discuss one of them, which is it to be?"
I did what I'd been doing for a while and ignored the long term pain, having lived with it some while, and I was given a prescription for some oddments.
Two junctions down the M60 at the Cheadle turning is the Alexandra Hospital, where I met Mr. L. After a chat, examination which involved a sort of dance, he tested my reflexes, how far I could bend, my balance, and discussed what I felt painful, getting in and out of the car, putting socks on. I was sent to make an appointment at their onsite MRI scanner, with a diagnosed "issue" between my 4th and 5th vertebrae. That was made for this Wednesday, 3rd at 8.15! I figured that we could have my MRI scan then attend for the radiotherapy, with a short break. This means leaving home around 7 AM, and we'll ask Molly's school if she can come with us (authorized leave). There and then they also made a follow up appointment for Mr. L on the Monday 8th December. I told him I had an acupuncture session booked he said go ahead.
Another snowy day. We set off at 6.45 am and sat in snowbound traffic for nearly 2 hours. We arrived at 8.30, slightly late. I was going to experience one of the machines Marg has been in. I emptied my pockets, coins, keys, phones, credit cards, glasses, mp3 player, camera, and even when undressed the operator also wanted all my rings off and chain. I was taken into a very white room with a large tubular device, and I jumped up on the bed. For around 20 minutes a rhythmic buzz buzz in varying pitches, and I could feel the metal band in the headphones moving about under the magnets influence. I was surprised my teeth weren't grinding with the amount of metalwork in my mouth, result of a misspent sweet tooth. There is currently a vote (referendum) for the Greater Manchester congestion charging, lying there I'd now pretty much made up my mind it was not a good idea as proposals would not help the queues I had been sat in. It stopped abruptly, and I got off, dressed, and put all my metal back on! We had breakfast at the Alex before moving on to Christies.
Needless to say the fear and dread going through your mind is indescribable. Why me? What is wrong? My heart sank, here I am giving my all to support Marg and evidently something, whatever it is, is being thrown back at me. Marg did her best to reassure me but not knowing what I was about to be told by someone I have to trust is most unnerving.
I looked at my scan closely. Mr. L has two monitors side by side and for the first time I see the usefulness, practical usefulness that is of having monitors side by side. The two dimensional sections, horizontal and vertical through my lower spine producing a three dimensional projection showed the mass ejected from my disc into my spinal column and giving rise to the pain. I have "Cauda equina compression" caused by a disc prolapse, occupying over 70% of the available space in the spinal canal (from the MR scan). I'm experiencing some of the symptoms, but not all. He said I can't tie you to the chair or force you he said, but even in the light of what is going on, I needed this sorting, and quickly. So much so I was on the emergency admissions list and had to telephone if the pain went bi-polar. "This is a normal disc... this is the one giving you trouble." It was a prolapse disc, the degenerated material had ejected (under some pressure of normal activity) into my spine, and if I did not have it operated on, it could paralyse me from the waist down. He said he could not force me in, but he said he could get me in Tuesday 9th for it to be sorted. He explained the risks of not having it done, and the risks of having it done. Six weeks of no driving (and off work) (and not getting Marg in for her chemo). Agonizing decision.
Leaving somewhat shell shocked, we decided I should get it sorted next week, so that I can recover over xmas, and more or less recovered to restart chemotherapy, probably a week or two later than originally planned in the new year. Tomorrow we may attend for a pre op as well as next to the last sesion of radiotherapy. Monday we have appointment to talk more to Mr. L as well as some radiotherapy.
What I didn't say was that I had been having slight bi-polar (other leg) symptoms.
He offered me next Tuesday (9th) and gave me some rough timescales for recovery. While it may delay the chemotherapy for Marg by a week or 2, I could stand to be paralyzed and unable to look after Marg. During the drive back we discussed it and decided that I would go for it. Friday I arranged to have my pre op. I cancelled my acupuncture session in the reasoning that I'd use the pain to guide me and if I got any worse pain (bipolar) I would, albeit reluctantly, let them haul me in.
At 1.15 Dr. E the anesthetist came to see me, went through the checklist, told me in a rather jolly roundabout way how he'd put me to sleep, but not really quite believing he was talking about me. Mr L then came to see me, and I know it seems silly now, but I didn't know he was going to be operating on me! He marked up on my back where he was going to operate. It was 1.30 now, and by 1.45 a fair mass of staff arrived, including a security porter (Crck, click) with an electric wheeled device he was going to attach to my bed. Once again the checklist was gone through, name, date of birth, allergies, when I last had something to eat, what I was having done. I laid on the bed and the porter maneuvered the bed out of the room and along the corridor, with the sides raised I looked up and watched the lights on the ceiling.
Eventually we arrived, the nurses left my side and the porter (who was also dressed in green) waited outside the airlock to the theatre suite. We chatted a while, and he had a couple of conversations on his 2 way radio, then the airlock opened and I was put in a bay. No matter how much closer I got, even lying in the airlock waiting to be wheeled in I thought I could just say no and hop off the bed. Still waiting we had a chat about Mr L and he said he'd operated on Russell Watson, so I realised Marg and I had a joint claim to fame. Marg has been in the same radiotherapy suite as Russell Watson, and I had the same brain surgeon! At last the anesthetist arrived and yet again the checklist was gone through, and I was moved past a couple of the other 7 theatres and into the yellow bay, of theatre 2, that I can assume was the place I would go to sleep. They chatted for a while, about one of the porters they called SatNav, mostly because he kept getting lost and no-one could usually find him! As the canula was slipped into my wrist we discussed alcoholic tipples and...
Nicholas? Nicholas? ...Are you in any pain. "No". "What time is it?" 4.30 I was told. I awoke wrapped in a silvered space blanket, and, something was missing, ah, yes, the pain! I felt quite woosey, I had an oxygen mask on, I could see and hear a heart rate monitor at the side of my and they took my blood pressure at least twice. Did I feel sick, no, was I in any pain, still I felt very comfortable. It all seemed quite confusing to me, but by 6.30 I was back in my own room, and I was told not to sit up. I had some sensation of something on my lower back, not pain, just a something. I had a drip in my arm, oxygen, several sticky sensor pads, a drain.
Dr. E came to see me and asked about the pain, and nausea, and I said I had none. He told me that I only needed a third of the morphine that the lady further down the corridor needed, so I guess that means I had a high pain threshold. Shortly after Mr. L came to see me and told me about the operation. He said I'd have to stay horizontal for 36 hours, I had a CSF leak, and he'd patched it with a bit of muscle and stitched it but if I stood up, the pressure (several pounds per square inch) would break the seal. He also mentioned one or two other things he'd noticed and he'd refer me for (great) but he delighted in telling me it needed to come out and came out in great big chunks.
The nurses did their observations every hour or so, not really sure but I felt hungry. They refused to give me anything but repeatedly asked about my pain, of which there was none. However to make them happy I took paracetamol. My temperature was a little high so I relieved myself of the space blanket! I also discovered I had to do rather a lot in this horizontal position, new learning experience! I regretted my soup choice but still nothing arrived to eat. It was one of the late staff nurses who introduced herself who finally let me have a hot chocolate taked through a straw from a beaker and some chcolate chip biscuits. They were the best tasting biscuits and hot chocolate I had ever had!
Lying there it felt like I had a leg transplant, Marg always said I was her backbone, now I could be the same with less pain and wobble. I had charged up and loaded several memory cards for my MP3, all within reach. I got no sleep that night. Turning over the lid had popped off my drain and I was leaking over the bed! I was given IV antibiotics through the canula and I had the same sensations Marg has when she starts her chemo. You feel this rush of cold start in the arm your canula is in, then it goes through your chest then up into your head and down your legs and other arm, all in the space of a couple of seconds.
My views for many hours...
The domestic called, "had I used the telephone?" Yes, so he set about cleaning it. He told me all the places he cleaned and it became a bit of where I had been versus where he cleaned in the hospital! Riverside, the MR scanner... He remarked on the odd sliding bedside tables and said I should make a complaint about them on the feedback form. When you tried to move the table, if you grabbed the top, it slid, revealing compartments and a pop up mirror. How annoying I thought. But in lying down for so long, I realised how useful it was, you could slide the top of the table to you to reach things, genius!
Another mistake was selecting a large broadsheet for my paper. Reading it lying down is quite tricky but I did learn that David Tennant had been diagnosed with prolapse disc and was having his operation on the Thursday. I also discovered that the kitchen intercom was pretty useless, after several attempts at shouting the kitchen lady wandered down the corridor to see me! I chose sensibly from the menu, something I could reach and eat from a lying down position. My MP3 was going flat but a nurse plugged my charger in. My drip was removed midday. Marg, Steph, Molly all came to see me in the evening. The next night was another sleepless one. I had random bald patches where the sensor pads had been, and my oxygen was now disconnected, the canula taken out of my wrist. I was starting to have paracetamol. nurses asking if I was in pain but I was only taking it to keep them quiet. I also started on my own diclofenac as it was better than the hospital had. They had a wide array of drugs for me, morphine, codine, the lot, should I need it.
Later that day I was escorted to the bathroom for a wash and yet again I commended on the cold floor. "holes in your stockings" they said again. I could also eat sitting up, so my menu choice was better and I no longer needed a beaker for meals. The evening nurses checked in, "hello Nic I'm Dindooooo-whoaa!" He's only gone and slipped on a wet patch on the floor! See I told them the floor was cold. When the nurses moved me to room 15, I said I knew I had a CSF leak, she said "ugh!". My longest walk was from room 14 to room 15, guided, slowly, then I climbed back in bed. Room 14 had the constant rumble of the motorway, it started about 6.30 am and died down by around 9 pm and the cold air conditioning. Room 15 had the planes landing at Manchester airport and felt like an oven.
My sister, her kids and my dad came to visit.
Room 15's net curtains looked as if a pen fight had taken place, and I was also told the window cleaners were on their way round! My blood pressure was up a little. Room 14 had ghostly air conditioning that could not be switched off. It showed off at the nurses station but still blew cold air. Room 15 was the opposite, an oven, so I went from the fridge to the oven! I got some sleep that night, leaving the curtains open to watch the landing lights of the planes. I had to leave the windows open too, I could not manage the catches myself.
I heard the physio coughing her way up the corridor. That weird sliding table had been a godsend in the way it adapted to my having to eat lying down. She helped me with a number of basic tasks, putting shoes on, dressing, brushing teeth, all without bending. She also took me to the (legendary) stairs at the Alex, and I coped OK. Most of the rest of the day was spent wearing the carpet out on the corridor with my new found walking skills. Everyone was looking for Mr L! It was getting late and my hopes of escaping that Friday evening were sunk. My transport stood down. just before 9 PM he strolled onto the ward! Iain from work had called to visit but it was all too late. Saturday it was to be when my paperwork for discharge would be prepared.
Paperwork completed for the district nurses who were to remove my clips, final observations, and Iain brought me home. It was a long journey, long to be sat but I coped, and stood up as soon as I got home. That was to be my preferred position, standing. The other was lying down of course, and that rather awkward way of getting in and out of bed.
A visit to the district nurses to remove my clips. Marg changed my dressing a few times but now was the moment of truth. Only one of them made me wince, the rest were painless. My dad took me down for the appointment, and coming out I felt I would walk a lot better. Nurses said that I needed no dressing. Almost immediately I started to feel more movement but had to remember that I have to be careful.
I've been overdoing it, I have hot and cold flushes in my legs as well as numbness. Time to take it easy. My posture chair arrived, and carefully assembled it. I had been sitting on fixed posture chair for some periods but time will tell.
August 2009 hospital for relatively minor operation in a couple of days off for 6 weeks, OK now.
December 2009 / January 2010. The diagnosis I did not want. Sorry no details here.
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