I had recently been told that my lungs were clear, meaning multiple tumours had disappeared and that my spinal tumour had not got any bigger.
We left the hospital elated and stunned. What do we do now?. This was the first time we had received good news since I got this killer illness. We really didn't know what to do. The war wasn't over, I was still to be scanned every 2 months for the next 3 years, anything could happen in any one of them. This last scan however, confirmed that this particular battle had been won by me. My body had miraculously taken to the new clinical trial drug and did what it was designed to do. There had been no guarantee that the drug would work at all. This was a real fear of ours during October as my back continued to deteriorate.
There had come a time, deep into the first 2 months, after my fall in the bath, that my back started to strengthen, started to allow me to walk relatively normally. I still needed crutches or sticks, but the basic art of walking had improved dramatically since that fall about a week before the scan. We dared to dream that this slight improvement was an indication that something was working and indeed it turned out to be true.
I had put everything on hold, we had obviously talked about Christmas, however it was going to either be a Christmas with good news or a prospect we dare not even contemplate, off the trial and onto drugs with a 4 to 6 month average rate of survival. Thankfully it was good news and we could plan a family Christmas. How precious a gift is that to be given?
I had been slowly building up a massive stock of Star Wars vehicles and figures for my youngest son, I had started in late October and was picking up second hand toys for a good price. When I say 2nd hand, vintage Star Wars are still highly valued, there are websites out there devoted to every release of every Star Wars vehicle or figure down to the colour of its light sabre and number of articulating joints. As Christmas neared, the same stuff was going for double what I paid for it, so I take some solace from that. I do admit I probably over did it.
Logan would have a massive pile of presents, we are talking half a room of mainly 35 year old Star Wars based toys. He was expecting Lego. That was the gamble.
He had about 30 vehicles and around 150 figures to open.
I think I had a slight brain meltdown as I amassed probably the biggest Star Wars collection in Yorkshire. However it was good fun to be sending questions to grown men about the firing mechanism on General Grievous's Wheel bike. My most ridiculous purchase was for a pair of Chin Guns that were missing from an AT-AT Walker I had picked up. My son would be oblivious but, I knew... I knew they were missing and couldn't bear a future knowing the thing didn't have its premier weapon system.
 |
| Star Wars AT-AT Walker - Chin Guns protruding from under head of this cumbersome killing machine. That's me waving in the orange suit. |
Logan is a boy who loves to use his imagination to play. He will pick up a space ship and forget there are other people in the room and will use sound effects as the ship comes into land. He will walk passed you, under you, over you, through you etc lost in his world of outer space. He commentates using an exaggerated yet brilliant American accent. He likes the scenario where two bad guys are talking, thinking they are in the clear when they realise the ship has been booby trapped and they both cry out, blaming each other as the inevitable explosion is triggered. Quite complex stuff for an 8 year old. I will have to ban him reading this blog as he is a big Father Christmas fan still. Logan is a throw back to how kids used to play before computers and hand held devices.
My eldest wanted a laptop, which made sense as he is now 12 and getting more techie. Obviously a laptop is a lot of money for a single present. The disparity between the two piles would make a grown man cry let alone a boy. However he did well all things considered.
We had a couple of visits to the Royal Marsden before Christmas. Obviously the mood was good. They started looking at my pain relief. I was taking a number of different painkillers for the Cancer. Some for the cancer pain itself, I had bone pain because of the erosion of my vertebrae and from the steel rods in my spine. The tumour and problems caused by post back operation issues meant I suffered from a lot of nerve pain. This was radiated pain down through my pelvis and into my leg and the pain could manifest itself anywhere around this area. The nerve pain would start when I tried to walk. Sometimes it was like I had a garter of barbed wire half way down my right thigh. As a walk continued the garter would get more tight and venomous.
Other times I would have throbbing pain in my left or right groin that would make you stop walking altogether and rest.. Another would be a specific gun shot style pain on my right hip
There was also pain from the wound site as well. The spine seemed to protrude out, obviously there was a steel rod in there so there would bound to be an unusual shape, however it was a bit disconcerting. You couldn't rest a pint on it, it wasn't a drinks holder size, but there was a Cornish Pasty effect going on under the skin.
The doctors decided to reduce my pain relief on my morphine tablets by 20% and my nerve pain drugs by 50%.
I was nervous about this as I thought they were overdoing it. I had read you need to reduce morphine based tablets very gradually or it can cause horrendous side effects through withdrawal symptoms. This is exactly what happened starting 2 days before Christmas.
When you make adjustments to powerful painkillers, particularly high doses it does take a couple of days before the new dosage hits you and it hit me like a rock on Christmas Eve.
It felt like my head was gaping open and a huge slab of brain had been removed. There was also a feeling that I was being ground down as if under a giant shoe, like how you might extinguish a cigarette.
Horrible feelings, like someone close had passed away. I couldn't see clear of it. I knew I needed to give it a couple of days and it would gradually improve, but this didn't help me in the hear and now.
My gloom peaked on boxing day. We had invited all our immediate family over. My brother and sisters and their kids came along, there will have been 21 adults and kids in total, so it was a busy, loud do. We have a kitchen dining room so everyone was in the one big room.
I remember just as everyone had arrived, I started getting sad, I realised I wasn't the man I used to be. Here I was, meek and mild, sat on the sofa unable to mix or converse. I used to be the loud mouthed guy stood up in the kitchen, offering and preparing drinks for everyone, shouting embarrassing comments across the room at someone. Being the life and soul I suppose. Now as I listened to other peoples conversations, I was a mere shadow of my former self. My life force had gone, I felt like an empty shell, good for nothing. No one was interested in me, my world was so tiny, all I could do was to talk about treatment as I did absolutely nothing else. Life moves on with or without you. There is nothing essential about you. This group is very happy to socialise with or without you,
I slipped away and went to lie down upstairs. I couldn't bare it. The cancer had destroyed who I used to be. That version of me didn't exist anymore, he was gone forever, what is left is a doddering old granddad figure who is brought tea and food at parties. People talk loudly to you but they don't put any effort into the questions they ask and are keen to move away.
Most of these thoughts were down to withdrawal symptoms. My wife came into the room and quietly sat by me on the bedside. She sensed what the problem might be and listened while I tearfully vented my feelings. A load of rubbish probably, but it was needed to purge my system of negativity. Once it was all out I felt a bit better. Dr Steve Peters, the Psychologist working with the England Football team at the moment calls these negative thoughts your chimp. He says its good to vent your chimp and let it talk irrational nonsense for 10 minutes until it tires and runs out of steam. The listener should ignore the irrational stuff and concentrate on the few points that genuinely need answering. Emma gently reminded me it was the drug withdrawal that had sparked this episode and that I was still the guy who everyone remembered. "You are just a bit poorly to exert yourself as you used to. Slowly but surely you are on the mend". She said people were a bit wary as you didn't look like you wanted to talk earlier in the afternoon.
I went back down after a while and sat next to my mum. She could tell I'd been upset. Rather than talk to me about it in front of everyone, my mum made sure I got the food I wanted from the buffet and that I had a cup of tea. She sat close to me and made light conversation that I could either take or leave. I appreciated her efforts at integrating me back into the room. My mum was just the tonic I needed to get back into the swing of things. Later we were able to be the same as we used to be, we play a game called Articulate where you have to describe a word, person,place, film or book and the group have to guess in a certain time limit. It often bring out hilarious results. Its a game we've played for years and it really cheered us all up.
 |
| My brother Stephen holds court playing Articulate with his new vintage Juventus football top on. |
The next day I woke up under a massive black cloud. I started researching withdrawal rates for these drugs. A lot of the sites said to go down by 5% and leave days between any changes you make.
This was quickly ruining my Christmas. We decided to increase levels slightly for each drug. I would still be on less than I was but it would give me less of a kick and maybe I could salvage some quality Christmas time.
Which we did, we invited a few friends round who had been most supportive to us over the last year or so. Whether it was for keeping us in logs, ironing, looking after our kids, regularly visiting, or for cleaning the house from top to bottom while we were away at the trial in London. We would come home and the house would look like a hotel. What a gift that was to come home to, Priceless stuff by Mrs Price.
We had another great party with great food, another aggressive game of Articulate, the game has literally had people in tears. Another great night with great people. I felt alive and normal. There were signs that the loud mouth guy in the kitchen was coming back.
We decided to stay in for new year. The kids managed to stay up until midnight and sang one of the most confusing versions of Auld Lang Syne I've ever heard. I managed a glass of Guinness and I asked Emma to get me a sherry. The tot she brought back didn't cover the bottom of the glass. She had taken a drop of sherry quite literally. We had managed to string a few very good days together as a family which was so important for everybody.
The kids have been severely impacted by this whole cancer journey. Freddie is very worried about his Dad. He gets upset if he comes home from school and I am in bed for instance. I need to explain to them both that it doesn't mean my illness is getting worse just because I need an afternoon nap. They tend to see things logically such as if I didn't nap today and then nap tomorrow it means I have a worsening condition. The fact of the matter might be I didn't sleep in the night or went for a longer walk in the day. The kids will slowly get more and more worried and more withdrawn until you realise and explain the situation to them. It can be weeks before you notice anything is wrong with one of the boys.
Fred has a counsellor at school which has helped him deal with the situation. Logan has been well supported at his school.
Logan did have to cope with some teasing about his Dad who was going to die. The school coped very well with this issue and it was dealt with quickly and appropriately.
We decided to take Fred and Logan with us on our first trip to London in the New Year. The boys hadn't returned to school yet so they escorted me to the hospital and waited as I was weighed in and my bloods taken. I then had 3 hours to wait until my infusion was made up by pharmacy. We took the lads to Carluccio's which is round the corner from the hospital. It was good family time. We thought it important to show the boys the medical day unit where I am treated. It's full of people getting treated all day, people from all walks of life and all ages receiving their treatments. It's a large, busy but quiet room with 20 to 30 treatment stations all being used from 8am - 8pm.
Logan had Ancient Egypt homework so Emma took the lads to the British Museum where he was to gather some great information and photographs that would get him a platinum award at school.
 |
| Fred, Logan and his excellency King Rameses II |
We were soon getting towards another scan. Each scan was 2 months apart. At the last one I had had such a good result that I was positive that my back condition would continue to improve. Meaning less pain, more mobility etc. The reality was different, I was kept guessing as to my short term and long term prospects by having a persistently poorly back. My nerve pain down my leg was never far away and too painful to fully be confident that amazing things were happening to my spinal tumour.
The arrangements for the scan was that I receive my infusion in the normal way and also have a CT Scan booked in on the same day at the sociable time of 7pm. During the CT Scan I lay flat out on a table. The tumour and the steel rod that is around my tumour has not made my spine the flattest of surfaces. It is very painful for me to lay out in this way. They put cushions under my knees which somehow lifts the burden that laying flat out incurs. The table I lay on moves through a large doughnut shaped scanner. Each time a voice sounding like a constipated Moira Stewart tells me to breathe in, as I do the table moves me through the scanner, my arms are over my head so that my chest and abdomen can be scanned. I am moved through twice, before the third run where they introduce a dye through a cannula in my wrist. This helps them better detect any tumours. Moira Stewart then announces the scan is over. An attendant comes in and we exchange banal small talk as he takes the cannula out of my wrist. I am left applying pressure to the cannula area when the CT scan technician radio's through that one more scan is needed. I immediately notice the guy next to me raise his eyebrows at the technician in the booth. I lay down, another run through is performed and I am allowed to get dressed, Why did they need another run?. Had they seen something that needed checking? My conspiracy head was working overtime. I asked the guy just as I left and apparently they hadn't gone far enough down to get the hip area. I didn't believe him, I was convinced something had been found. I rejoined my wife and didn't mention the extra scan, I didn't want any fuss and I didn't want to upset her. It was the end of a very long day.
We got a taxi back to the hotel where we were staying at in Kensington. Emma went out and bought us some supper and we had a quiet evening. I can't really explain what it feels like, the days before the scan, especially the night before. There is so much at stake, so much to lose. You start thinking of unfulfilled goals, dreams you always wanted to try.
I always hoped we would live in the Dales or somewhere nice on the coast. Or down in Cornwall and be able to surf everyday. Or give a go to my own business. A cafe, or buying, reconditioning and selling VW Camper Vans. The mind flits as you lay in bed.
What will the kids look like in 10 years? How will they turn out? Will our constant nagging of the kids pay off? It's called seeing the job through and I haven't yet with my kids.
I have known my wife for 18 brilliant years. I met her when she was 17 and I was 24 (just). Emma made me sit up and think about my lifestyle (in the pub) Emma made me become more responsible which I desperately needed at the time. We have been through so much together. We are the sum of 1 part. I don't feel the same when Emma is not with me. She has really stepped up since I was diagnosed. The last 18 months have been hell but it has been a beautiful hell with Emma by my side.
Then there is my mum and my brothers and sisters, my friends, it sounds preposterous that there is even a suggestion that I might be asked to leave Planet Earth. There is no one to complain to, you are just out, gone. There is no fairness to these things. It doesn't matter how popular or how loved you are.
I was an avid games player, whether it was football, cricket, rugby or Monopoly, Cluedo or even Noughts and Crosses. I had a strong desire to play and win, safe in the knowledge that both sides were following the rules. The English are big sticklers for rules. "Rules are what separates us from the savages" was a quote from some celebrity of the British Empire.
In life, I have followed the rules, I was always well tuned to the latest health news, I'd cut down on my drinking habits and I hadn't smoked in 13 years. One month before being diagnosed I had managed to do 62 press ups in one go as part of a 6 week press up program I had started.
I was as strong as an ox, I would be attacked by 2 boys on the beach and I would swot them aside like King Kong did with bi-planes.
 |
| I victorious |
To be told I had Cancer not only hit me hard from a sheer shock level. But I felt cheated because I had followed the rules of the game and therefore should not logically have an illness that on average strikes the over 50's.
The next morning we rose, had breakfast and had till 2pm to wait before we received the results of the scan. The extra run through on the CT Scan was burning deep into my imagination, "Why did they need another scan, what had they seen.
While Emma was checking out I got settled in the reception area of the Kensington Close Hotel and didn't want to leave the nice spot I had found. I just wanted to enjoy the silence, watch the world go by. We spend too much time rushing from one place to the next. It was nice just to sit there. On my left was the reception desk with a steady queue of check ins and inquirers. On my right, a large window looking out into a quiet Kensington street. I would see ladies walking fancy dogs, watch airline crew, all suited and booted glamorously breeze in and check in at the hotel. Mini buses would arrive, fill up and disappear to somewhere in London. It was good to watch the duties of a top hatted concierge, calling taxis like some Victorian gent might call a Hansom cab. I would glance at my wife who understood that I needed this quiet time, we were in no rush and didn't really fancy food before our appointment at 2pm.
Finally we got a cab. We were going to walk up the Fulham Road to find a cafe. Almost immediately I had severe nerve pain in my leg. I was stressed out. I just wanted to sit in the hospital and wait, which we did. I looked at my phone, there was a missed call, I called Voicemail and it was the Trial Nurse. In the message she asked if I could come in early and go straight to the MRI department as they needed another scan. No more details. I rang her back. No answer. I told Emma, she went white and then composed herself. We made our way to the MRI dept and I was seen immediately. I was getting some serious bad vibes here. The lady walked me through and was looking at her notes.
" So they want a full scan of the spine?" she said. I didn't know, why would they want a full scan of the spine, had it spread up the spine and they needed a clearer look at the damage? I didn't have any answers. I lay in silence for 45 minutes in the noisy MRI thinking the worst. This scan and the extra one from last night dominated my thoughts. I had given up by now. Dead man walking.
The MRI finished. I got dressed and we went to wait for our appointment, Ages we waited. Not speaking until finally we were called.
"This is it" I thought, Emma was trying to keep me upbeat but she had no idea why the MRI was called.
We walked in and an amazing sight met us, smiling, beaming faces. The scans were good. My lungs were still clear and my spinal tumour was slightly better than the previous scan. The MRI was necessary as CT Scans are not good at seeing tumour detail within bone. They had needed an MRI to confirm all was good.
In future I would have a MRI as well as a CT scan. For now it was a victory snatched from the jaws of defeat.
Emma and I again left the hospital stunned. So much of the last month had shrouded us in doubt over this scan. My back didn't feel better, some days much worse, but at least it wasn't a growing tumour that was causing the pain.
"Go home and make sure you celebrate your good news" was good advice we received. We would try, but maybe we both could do with some post traumatic stress therapy first.
Seriously, I would go on to look into some form of Psycho Oncology to help me get through these scans in the coming weeks as it was starting to leave me damaged.
The delay in the hospital had mean't our booked train tickets on the 17:19 had sadly gone. There goes another £151 on new tickets. Life ticks on regardless. How insignificant money worries and time constraints really are. Annoying yes, but being alive is a lot better.
No comments:
Post a Comment