The travelling was a bit of a daunting task. I felt at my most vulnerable with cancer. London, was a busy place for busy people, pushing and shoving. Not for a man with a tumour on his spine who couldn't walk for more than 5 minutes without having to sit down to recover.
The trial paid for my travel expenses and crucially my taxi fare from Kings Cross to the hospital which kept me out of the Underground and the hustle and bustle of the city. I wasn't well enough to travel on my own and Emma would accompany me each trip, which we had to fund. This was to cost us a lot of money but we had no choice. This could keep me alive!
I had travelled to London a few times with work and 9 years before I had chosen Central London for my stag do. I had peaked too early on the trip and was whisked back to the hotel, bizarrely on a cycle Rickshaw, quite early in the evening, completely inebriated. My best man, Ashley had dutifully got me to my room before I was sick. He made sure I was safely in bed and all cleaned up before he left me to join the others. Unfortunately, being sick had made me relatively sober so after a very short snooze, I was quite alert, I didn't have my mobile with me at the time so I ended up settling down to Match of the Day in my hotel room with room service as my friends partied the night away.
Don't get me wrong, I played hard when I was younger. I had probably started drinking 'up town' when I was about 15 years old.
On my first night up town, I had nothing to wear as all I was used to doing was playing in the park. I ended up with my older sisters black sweatshirt on and dark tartan trousers. The sweatshirt showed signs of boob stretch which was a bit disconcerting.
I had £4 on me on that first night, where 4 mates and I walked into each pub as though we were going to get busted and huddled together in a very quiet group. A pint of lager was 96p in those days. It allowed us 4 pints. By the last bar, we were waving our hands in the air to "Hold me Close" by David Essex. Shouting the lyrics intensely into each others eyes. A song we wouldn't bat an eyelid to if we heard it sober.
By the time I was 17 / 18 I would have a routine of leaving my place of work on a Friday night and meeting my mates in the local. The drinks after work would normally last till closing time. Believe it or not, pubs used to be busy in those days.
I have always played sport on a Saturday afternoon and the drinking would start again after the game, I started off playing U19's rugby. this was a very sociable sport and then later I changed sports to football which was getting me into the centre of town for around 4pm each Saturday.
These were my formative years and I was drinking as much as the next man at my age. Well maybe a bit more than my peers but I was a fit healthy, sporty young man.
On Sunday, you would have to meet your mates in the local to analyse the previous 2 nights of drinking, getting all the gossip. We also had the occasional trips out to my University friends in Leeds and Hull.
I really didn't have much of a career plan at the time, I was happy being young and in the middle of a great social scene and we racked up many unforgettable, totally ridiculous nights out to boot. Ashley is my best mate and we used to subsidise each other until our respective paydays came along. I would get paid mid month whereas Ashley would get paid at the end of the month. We were always borrowing from each other.
I sometimes look back on these times and think was it the alcohol levels 23 years prior to my diagnosis that led me to get Cancer? I will never know, there were plenty of people doing far worse things to their bodies than I was. I was playing sport regularly and was very fit at the time.
Also, watching some of these programmes on TV that show today's drinking culture, my drinking was nothing compared to the quantities they are drinking to get paralytic these days. There wasn't any shots available back then either or a mixing your drinks culture, we tended to just drink beer.
Back to our story, the hospital process would be that I arrive in the morning and blood samples would be taken, I would then be weighed and finally assessed by a doctor. The doctor, if satisfied with the assessment would allow the infusion to take place. All going well I would then have to wait for pharmacy to make up my drug which would be given to me late afternoon. It was then a scramble to get to Kings Cross to get home.
The train was our best option of travel. The journey was about 2hrs 15 minutes all going well.
For the first few journeys to London, I went with just my walking stick as support. The journey started to become a major problem for us as my back was deteriorating rather than improving with the treatment. We knew it might take 5 to 6 weeks before the treatment would start working. There was of course no guarantee that the treatment would work at all.
 |
| At a Kartiers F.C. Charity match that part raised funds for Kidney Cancer |
The hospital day was incredibly long and tiring versus a sedentary day at home, especially being in such a vulnerable state. My back would get damaged incredibly easily. We were on a steep learning curve as the travelling was severely impacting me and my standard of living.
The problems started at our front door. We started by getting a lift to the station from our family. If we got a lift in a smaller, lower car to our own, even though it was less than a mile, it would aggravate my spinal tumour, I would get out of the car with a severe dead leg in my left leg which was caused by referred nerve pain. I could hardly walk and would need to take some liquid morphine to deal with the pain. We hadn't even got to the right platform and I was having a major incident.
The next issue was waiting for the train. If I didn't have the necessary layers of clothing, scarves hats etc I was at risk of having a shiver attack.
The metal benches on the station were hardly the most comfortable of seats. I was hoping for some relief before the train came to recuperate and get some strength back. These provided none.
Then there was where we should wait for the train. There is 100 yards between the front and back of the train. Even though we knew which coach we were to sit in, the train guard couldn't tell us which end of the platform we should stand at for some reason. When you are disabled you need all the help you can get, so knowing where to stand is a basic piece of information that should be available. I didn't want to be stood up when the train set off, especially in a wrong carriage away from where my seat was, so I needed to walk along the platform to my carriage if I could. When the train did arrive, I would spot the carriage number as it passed and invariably we would have guessed incorrectly. I had to scramble to my carriage with my dead leg pain shooting down my leg. The time you get to board the train can be scandalously quick. We had barely boarded before the train doors were slammed shut and the train set off. Hardly a dignified start to proceedings.
A moving train makes it incredibly difficult for me to walk to my seat. More time should be given for disabled people at stations. If it adds 5 - 10 minutes on the overall journey then big deal. People don't realise until maybe they become disabled themselves.
All of these issues were personal to me. Emma on the other hand was carrying all the bags, administering medicines, keeping me positive and berating guards for not having sufficient information for us. Emma is brilliant at demanding a better service for us when we are on our travels. I, being vulnerable don't like to draw attention to myself but Emma is straight in there, as she should be, if the service we receive is shoddy. She continues to be my hero.
On our second visit to London, we were returning to Selby and had an hour or so to wait at Kings Cross Station. It had been a long day, but I had been given my treatment and we were looking forward to some food in the Giraffe Cafe at the station. The seats there don't have arm rests and there is a hole in the back of the seat just where I need some support. As I sat eating, I noticed my back was playing up a little as the tingly thigh pain had started. I was getting a bit worried. I decided to stand up to take a walk to stretch my legs and back etc. I managed to stand up ok, I soon realised that I couldn't take a step forward or backward. It was the most peculiar incident, I wasn't in incredible pain, it was just that something was stopping me mechanically taking a step forward. I managed to shuffle, inches at a time over to an island where the cutlery was kept. The cafe hadn't noticed I had an issue. Emma stayed sat down, I wanted to sort myself out and didn't want fussing. I thought I would remain stood up and would subtly stretch my back and legs to get my body going again. Soon enough Emma joined me with the bags. We decided to head to the handrails that looked out from the mezzanine onto the station. We would also be able to see what platform our train would depart from.
I put my arm around Emma and with the other hand heavily on my walking stick we started shuffling forwards. I couldn't perform a proper stride so it was forwards doing baby steps that we made our way to our target, the handrail. We silently progressed, only we knew of our crisis. I remember thinking it was like the end of a spy thriller. I had just been shot by a silencer from a faceless assassin, the tragedy of so near and yet so far. Off we shuffled as I desperately tried to relay the code to my fellow agent.
Finally we made it to the handrail. Ten minutes earlier I was in a blind panic as to how we were going to get home or if we needed to get back to hospital. Now I was more hopeful, we smiled at each other, another absurd moment shared. While the underlying reason for the incident was something horrific, we were just relieved that my immediate symptoms appeared to be getting slightly better. We both turned to the massive information board across from us that 1000 people below were looking at. As we looked across, we saw a "Cancelled" status bouncing along all the trains on the board. A collective groan echoed out from the station. Everything cancelled. It was 18:30 on a Monday evening, I wasn't sure if I could walk and we had no way of getting home. The timing of the cancellation couldn't have come at a worse time for us. Today was in fact, Emma's birthday. A trip to London would normally be a great birthday present, this day however was completely spoilt and was going to get worse.
We decided to make a dart to the Great Northern Hotel that is part of Kings Cross Station, before everyone else had the same idea. There was no way that I could get in another taxi in search of a reasonable hotel. I could only shuffle as if my trousers were around my ankles. Emma grabbed me again and off we shared a very nervous trip down the escalator and into the hotel reception. I totally felt like I had been shot in my leg and had received a sustained baseball attack to my lower back. The receptionist calmly told us the rooms were £250 per night. Emma asked if they could do anything a bit cheaper given our circumstances. They offered us £218 which although was a ridiculous amount of money, we knew we didn't have any options. There is a scene in Planes, Trains and Automobiles where John Candy rolls upto a cheap motel and tries to barter for a room with a cheap Casio watch. We later found out the reduction was that they had removed breakfast from our stay. So much for goodwill.
 |
| My famous long Johns, bottom half under jeans |
We managed to get upto our room where I just melted on the bed. The room was large for a doll's house but not for real people. However I knew all I needed was a bed to rest my back. Over time, full functions would return. The London days were totally different to our days at home. Back home, I take things easy when my back is hurting. At the hospital I am up and down all day for various tests and meetings, regardless of if my back hurts, I am up and down. Then in and out of taxis, I think my back had just got over inflamed in the cafe which led to me only being able to shuffle.
It dawned on us at the same time that I had not brought my overnight tablets. I didn't have any for the morning either. My morphine painkillers and the tablets for my nerve pain weren't with us and I was totally dependent on them as they managed to mask the pain. Emma rang 1-1-1 expecting a half baked service, however within the hour a doctor was in our hotel room, weighing up the sight of me in my t-shirt, socks and undies on the bed. He gave me a quick check over, realised we were past masters at this sort of thing and prescribed what we needed There was a pharmacy in St Pancras which is literally over the road from the hotel. Emma was able to pick up the tablets and get us some supper and breakfast for the next day. We were able to get back home the next day, the rest had done my back the world of good. We were also able to claim the hotel costs back from the train company later.
The next few trips were largely uneventful as we settled into the routine. We always seemed to be perilously close to missing our train due to unforeseen delays at the hospital. When booking our train tickets, we have to select the specific train we wanted to travel back on. Anytime returns are upto £100 more expensive than a specific time return and aren't useable at peak times.
On one occasion, everything had gone like clockwork. Arrival on time, treatment on time, taxi on time and onto the train on time. We had just got through Stevenage when an announcement came through on the tannoy. The train's windscreen had been smashed by debris that had fallen from a passing goods train. We had to crawl back to Stevenage where we would wait for the next train. As we left the train we heard the guard complaining about 2 Hamlet cigar stubs that had been found near our seats.
We had about a 50% success rate with the train home.
At home, my back was continuing to deteriorate. I was in a lot of pain and could only take sheepish steps forward. I wasn't going anywhere in between London trips. The doctors weren't sure when the drugs would kick in. They had ventured 5 -6 weeks. I was around that mark and had no feelings of improvement with this drug.
On about our 4th visit to London we had decided to stay in Kensington on Sunday evening so I arrived rested and ready for treatment on Monday.
The train journey had been particularly painful, We had not been able to secure a table seat so my leg room was very limited in standard seats. I am 6ft 4 so my legs were cramped up with no chance of stretching for over 2 hours.
By the time we reached Kings Cross, we waited for everyone to leave the carriage. I stood up but could hardly walk, I could manage baby steps only. I was maxxed out on my liquid morphine and still the pain was incredible. We called a train guard who kindly radioed for a wheelchair. That would help us to the taxi rank at least.
It was in the taxi that our story turned into a comedy of errors. Our hotel was the Kensington Close Hotel however we asked to be taken to the Kensington Court hotel. I think the bluster of getting me into the taxi from the wheelchair had taken our attention away. Every pothole and ramp along the way was shooting nerve pain up my back. I had my bum in the air for most of the journey as I held my body weight using the assist handle above the passenger window. My other hand was pressed straight down at my side, taking my weight so the least amount of weight was through my buttocks. The journey was 30 minutes and an incredibly painful, exhausting ride.
We paid the driver, spent a long time getting me out of the cab and then again I was shuffling along, up 6 steps with no handrail upto reception. My focus, staring at my feet, willing them forward, trying to blank out the pain. Emma was in the queue waiting to get checked in. I decided to stay standing, the chairs looked low, I didn't fancy the chances of getting out of those chairs, all I wanted was a bed to rest my back, after many minutes it was clear we had come to the wrong hotel. The taxi had long since driven away. Oh the despair.
Another taxi was called, another 10 minutes to wait and it was back down the stairs again, shuffling along, back into the taxi (agony), over the bumps of Kensington to our correct hotel. Did I mention it was pouring down? Finally we had got there. More steps, more waiting in reception and then the longest corridor in the world, before bed.
I remembered a life before cancer when I would have a normal train of thought, about the best way to bring up our kids, entertaining my wife, holidays, having a laugh with my mates, getting the best out of my job. All that is gone when the Big C rolls into town. You live in an immediate world. Pain can absorb every thought in your head, the spectre of a terminal illness hangs over you on a minute by minute basis. Knowing I had a life or death meeting every 2 months after my scan is a prospect I wouldn't wish on my worst enemy.
Sadly pain and cancer simply absorbs all your thoughts, there is no room for the pre cancer stuff, the illness had made me totally selfish and reliant on other people. A good day is a relatively pain free day.
Big events were happening to our family that I was playing a bit part in.
In the past 2 months my wife had entered her first Triathlon and was able to finish in good time. I didn't go.
My eldest son started at his new Secondary school. We had decided to pay for private education to give him the best start we could afford. Although I am here and in his life, I am a fraction of the life-force I once was. I don't have the energy you need to be a hands on Dad anymore or at least at the moment. We were keen for Fred to be surrounded by positive role models at the school. It's also a small school. There are 24 kids in his year. Everyone knows everyone there. A family atmosphere to support him. I wasn't well enough to see him to school on his first day.
My youngest son Logan in Year 4 at school, aware that his elder brother was getting all the attention of friends and family. He needed Dad's support to make him feel special during this time. I simply wasn't aware of this at the time as I was self absorbed in my own little world. Surviving puts blinkers on you and ear muffs too. You hear and respond on what suits you. Good news is half heartedly received.
The kids naturally have bags of energy and they would burst into the house after school. Laughing, playing, chasing each other. I may have sat in silence for the previous few hours so it was definitely a case of when two worlds collide.
I wasn't trying hard enough to embrace their lives, their highs and their lows. I was going through the motions, wrapped up in my condition. Cocooned in pain and self pity.
Back to the hotel, the next morning I still had poor mobility and was struggling to walk. This worried us as a good nights rest would normally freshen me up. We got to the hospital and they could see the state I was in. They decided to put me into a day bed where I could lay out, have some privacy while the doctors decided what should happen. I received my infusion which was good. They decided to give me an MRI so that they could have a precise reading of the situation. This was getting very tense. It may be that my painkillers needed to be increased or new drugs could be introduced. The pain felt mainly like nerve pain. The MRI was the key, I could very well be thrown off the trial if it showed progression. Something new was causing this level of pain. It was decided I would stay overnight in hospital while they found the root of the problem. We had previously booked this night in our hotel so at least Emma had a room to stay in. I was to see a Pain Management specialist as well the next morning.
Finally the MRI results were in and they had been assessed. The tumour had not grown which was great news. It did show signs of some nerves being pinched, its all very tight down there as veins and nerves pass through the pelvic bones into the leg. This "pinching" would cause me a lot of pain, however it didn't look threatening from a paralysis point of view. They were happy for me to continue on the trial and the Pain Management specialist prescribed more nerve pain drugs that would mask the referred, tingling, nettle like pain I was getting down my legs.
I was allowed home the next day.
A week or so later at home, I was still waiting for the moment that I could say, "I think I am getting better!". I woke up one morning and didn't feel great. I decided to have a bath which seemed to worsen how I felt. Emma was there to help me out of the bath as usual. I take getting out of the bath in stages. I would lift out and shuffle and sit on the side of the bath to make sure I didn't feel dizzy. When I was ready, I would stand up and start drying myself, Emma dried my legs (bless her).
I stood up and in the same motion fell past Emma onto the bathroom floor. There had been no strength in my legs and I just went down. Luckily I hadn't hurt myself in the fall, My only issue was that I couldn't move my legs.
Since my back operation I had been warned that if the tumour kept growing, it could cause spinal cord compression which could paralyse my legs permanently. I was pretty sure this was the moment we had all been dreading. The big hope was that the trial would start shrinking the tumour before it caused spinal cord damage. Although we weren't sure, I think I had come to the conclusion myself that the battle was lost. All hope was gone as I lay naked on the floor. Again my movie head had the camera panning upwards from my body, as my spirit that had kept up the fight for so long, since my initial diagnosis 14 months before, left my body in that one moment.
Back to the scene in the bathroom. Emma had covered me up, she had managed to put some brilliant white thermal long johns on my legs and a matching thermal white top on my front. An outfit that in hind sight must have made me look absolutely ridiculous and one which would leave nothing to the imagination. It was one step away, in the cruel stakes of putting sunglasses and a cigarette on a dog. There was still nothing happening with my legs of any note, I could wiggle my toes, but I couldn't pull my legs up to then get on my knees.
My wife had rung my brother and father in law. they had helped me gently move into a sitting position and reassuringly hadn't mentioned what I was wearing.
I was getting a bit more feeling in my legs. I managed to push myself along on my bum, we had a landing to manoeuvre around which was 2 steps down and 4 steps up. The plan was to get me into bed and then make a decision. I inched down and up the stairs and then was heaved up into my wheelchair and into bed. My legs felt slightly better, I was able to move them up and down on the mattress and lift them up. This certainly wouldn't be possible if I had spinal cord compression. We decided to give it 2 hours and if things kept improving we wouldn't call an ambulance. If it stayed the same or got worse then we would go to hospital. I hadn't lost any bladder or bowel control which was a good sign.
Fortunately I was able to stand up with crutches and walk to the toilet later that day and downstairs the next day. This was 2 days after I had sarcastically and categorically assured my brother that we didn't need to move my bed downstairs as had been his sensible suggestion.
 |
| A toast to my new bedroom downstairs (Long Johns again) |
The next day, my friends and family moved my bed downstairs into our second sitting room. A necessary step but another symbolic step in the wrong direction.
We were due in London a week later. We decided to take the wheelchair for the first time.
There is a wheelchair space in one or two carriages on every London train, it is nothing more than an empty space where the chair can be pushed into. There is a table and a companion seat opposite. Taking the wheelchair guaranteed me a comfortable seat. It was peculiar using the chair in public, people do look at you slightly differently, or at least you perceive they do. It can be comical as the majority of people will talk to Emma about me as I just sit in silence knowing I won't be pulled into the conversation unless Emma brings me in. She does use expressions such as "well you can ask him yourself, he's right there". We have gone into cafes with me in the chair and therefore I would be 2 ft closer to the waiter and they have gone for eye contact and welcomes with Emma first, Emma always redirects them to me.
More hospital delays led to another annoying wheelchair incident. We had missed the train by literally seconds one time. Emma had run ahead to get a foot on the train and a porter was pushing me along just behind. Regardless of Emma's touching distance to the train it departed despite them knowing we were seconds away as I had heard the porter talk to the train porter through his radio. Emma was in tears when we regrouped. I was pushed at an angle away from the group so I almost had to turn 180 degrees to join the conversation, which you can't do when you are in a wheelchair. The porter, Emma and a Hull Trains representative argued about what had just happened and what was to happen next while I was left sat in my chair, away from the group just enough to be totally invisible. That got to me. A new life for me.
Another aspect of wheelchair life is being pushed around by someone else. It means you have got no control of where you go, how fast you travel and whether your driver suffers from road rage.
The chair we have is very heavy, particularly with me in it. Emma needs to get a head of steam up on it as it travels best at a certain mph. Its not a dainty chair that can stop and start easily. This makes it annoying for Emma when pedestrians don't appear to notice we are coming and she has to slow down. Its a tiring job for her.
When I was well, I tended to give wheelchairs a wide berth when I am walking along so that they can see they don't need to alter their direction. Some people will walk towards you and move out of the way right at the last minute. Emma is one who likes a challenge and believes that we have right of way over able bodied pedestrians. I agree in principle, in reality it can be terrifying as pedestrian after pedestrian plays chicken with Emma, Emma never moves or slows down so I am left like a gibbering wreck in the chair, certain of a collision, sometimes trying to point at the danger, other times shouting something like 'Dear God... look out!" The collision threats disappear as fast as they appear and it can be a constant battle, particularly in a busy street. It felt like I was in a game of Asteroids.
The pavements and kerbs around Chelsea are not wheelchair friendly. I could have been thrown from the chair many a time, if I didn't have a seat belt on because we had come to a hard stop on what was supposed to be a dipped kerb. Emma would have to lift me up or pull me backwards over a kerb to get me over the road.
Both the invisibility of being in the chair and the lack of self propulsion, having to rely on other people to push you along hits you hard. It takes away some humanity from you. From my earliest memories, I have had freedom to roam and I have shared in common courtesies when interacting with people. By just sitting in a wheelchair, you can lose so much control and with it self respect if you let it. My hat goes off to those people who are permanently disabled. Maybe their chair's give them more independence than mine does. Maybe you just need to get more bullish on the street and more assertive in conversations. When you first start, it does give you a major kick up the backside.
Our first wheelchair trip to London coincided with our first scan. We had been on the trial for 2 months and had been down about 5 times. It seemed since we started the trial, that my spine tumour had accelerated in the wrong direction. I was now in a wheelchair rather than on a stick, since my fall in the bathroom I had noticed small improvements in my legs, it felt like the fall was the low point and that maybe just maybe, things were improving.
I had not felt any symptoms from my lungs. I had multiple tumours detected in the first scan at the start of the trial. Only God knew if there had been improvements in my lungs and spine.
We received our infusion on the Monday and had a CT Scan to check for progression. We were to go in the next day at 2pm for the results. If indeed the tumours had got bigger or new ones had been detected I would be off the trial and back to the standard secondary drug that my oncologist said might give me 4 -6 months before they stopped working and the cancer would have nothing to stop it progressing. No pressure then.
Tuesday 2pm arrived. We didn't have a clue how this was going to go. We were both very emotional as we patiently waited to be called. We'd been here before, another life or death meeting. I'd seen too much TV where after a long wait and a close up of the contestant, they would be told they were going home or they were through to the next round! These certainly weren't getting any easier. So much to lose. Kids need Dad's to help them grow up was just one of my thoughts.
We were called into an office, we were expecting the doctors to already be there but the room was empty, another 10 minute wait. This was agony. Finally a doctor I had never met before came in, he was a young South East Asian guy who looked about 12.
He started talking about my lungs, 2 minutes, 5 minutes passed, I didn't understand what he was saying. I interrupted, it kind of felt positive, I asked have I passed the scan.
"Oh yes" he said, stunned I hadn't worked it out. "...the lungs are clear"...."...the spine is of a similar size but we think it's a healing flair" I had passed the scan! It was the best news possible. The lungs were totally clear of tumours or any sign of Cancer. Fantastic news. the back seemingly was starting to work as well.
This was a special moment, all we had been through in just 2 months, all the hardships, worries, falls, recoveries, etc. I had been convinced the results would be negative and yet the scan proved the trial drug was working. Things were going in the right direction for once. It was great news that we didn't know how to receive as we had had so many negative episodes. Unbelievable news.
We returned on the train. "Snap out of it Mike" I said to myself, "start living in the moment, share in your families lives, like you used to" We got home, we hugged the kids, we started to look forward. We could start looking forward to Christmas which was less than a month away.
We had scans to come from now until who knows. Live for the moment. That's all we can do.
choose one pair of ugg boots as christmas gift for your kid and it can keap kid's feet warm in winter http://www.pinboots.com
ReplyDeleteUgg Kid Bailey Button Boots Black
Ugg Kid Bailey Button Boots Chestnut