Two days later I found myself sitting in the waiting room of the Cancer Clinic in my local hospital. It did not feel real I was detached somehow from what was happening. The seats were not very comfortable and I felt rough to say the least. A nurse called me, took my weight and a urine sample then told me to sit back down.
People came and went as I sat in my own little world. I had not come to terms with what was happening to me. Eventually I was called. A pleasant lady doctor who was head of the clinic led me to her office. She examined me and asked me about my symptoms.
Out of the blue she suddenly asked me if I kept parrots! That brought me back to reality. “What’s Parrots got to do with it?” I asked.
Apparently they carry a disease that causes the same symptoms. Unfortunately I had never kept parrots so it was not that. She told me that before treatment could start they had to find out which type of cancer it was. There are over thirty different types but they are first divided into Hodgkin’s and Non Hodgkin’s Lymphoma. So I would shortly get appointments through for:
I asked if the Arthritis symptoms would go once the treatment started and she told me she did not know.
The first test was a week later and the others were to follow in quick succession. Two days after the appointment I got very bad pains in my chest. They got worse during the night and I phoned the ‘Thames Doc’ night time service. I was told to go immediately to the hospital outpatients and see the Doctor there. He examined me and found I now had Pleurisy (Oh deep joy!)
I went to see my GP the next day and he prescribed Morphine to ease the pain I was having, as it was now almost constant.
The day of the CT Guided Biopsy dawned bright and cold. We drove to the Hospital. I could not go on my own, as I was to have an aesthetic and it would be unsafe to drive back.
I was admitted to the Cancer Clinic ward put on a bed and wheeled down to the CT scanner. The biopsy consisted of a long needle being inserted in my back and into my lower lymph nodes where the cancer was. (The reason for the pains near my kidneys the doctors ignored) The needle would be inserted slowly inch by inch and the scanner used to check its progress. Because I had to lie very still they gave me a general aesthetic using a drip into a vein. The next thing I knew I was laying back in the ward feeling groggy.
Two days later was the bone marrow biopsy. Oh dear, this was by far the worst. I had to lie on the bed on my side. The senior nurse gave me a local aesthetic in my hip and told me that they take a sample of marrow from the hip bone as there is a bit that juts out and is easy to get to. Guess what? I did not have the jutting out bit!
After poking my hip bone around for a while she produced what looked a bit like a corkscrew and proceeded to work it into my hip bone. Even through the aesthetic I could feel it bite into the bone. It brought tears to my eyes every twist I felt and heard. She asked me if I was all right? I was just able to nod and grunt through clenched teeth.
All I wanted was for it to end. She finally got her sample and cheerfully informed me that if it was not enough she would have to try again! The MRI scan and ECG were a piece of cake after that. Luckily they had enough bone marrow so much to my relief I did not have to go through another biopsy.
The following week at the next appointment with the doctor she told me I had Non Hodgkin’s large B cell Lymphoma Stage 4. The stage 4 meant it had spread to other organs and was in my spine. They had almost left it too long messing around treating me for Arthritis!
The treatment was to be chemotherapy followed by radiotherapy to finish it off. The first session was to start the following Wednesday. Once the treatment had started there were several things that that I had to remember.
The chemicals were dangerous and I had to ensure towels flannels, anything personal was isolated from the rest of the family. Because my immune system would be all but destroyed during the treatment I could only drink boiled water. Tap and even bottled water were out. All meals had to be freshly and well cooked. Nothing precooked at all. Everything I ate had to be carefully checked to ensure it was well within date. (One person who was being treated the same time as me succumbed and had a prepared sandwich from a reputable shop. It put him in hospital for two weeks and delayed his treatment so take what they say seriously). I had to stay isolated as much as possible so as to minimise the chance of colds and flu.
The doctor also asked me if I was willing to take part in a trial which consisted of a change in the treatment cycle. The new cycle was called RCHOP14. I was to be treated every 14 days instead of every 21 days. My first treatment date was Wednesday 30th November 2005.
Every Friday after treatment day I had to undergo an Intrathecal injection of Methatroxate this was because the cancer was in my spine and they were concerned it may go to my brain.
I asked why this added treatment, would not the chemo do the same thing? Apparently there is a membrane between the Brain, spinal column and the rest of the body that prevents the large molecules of the treatment drugs from entering the brain and spinal column. The Methatroxate had to be injected directly into the base of the spine.
So the first day of treatment dawned, we arrived early and I was shown to a bed. They checked my blood tests. (I had to have a blood test every Monday before treatment) They stuck a needle in to a vein in the back of my hand and taped it down. The nurse connected it to a long tube that went up to my personal dosing machine. A small box about six inches square on a wheeled stand. She then hung a full chemical bag on the top of the stand and set the dose rate on the box.
I called the wheeled box a dog as I had to take it with me wherever I went. It had a battery backup so if it was unplugged from the mains it would keep dosing while I went to the toilet. The bag was exhausted after five hours. Then the Nurse came with the rest of the chemicals in very large syringes. She wore gloves and a plastic apron. The drugs were toxic!
She disconnected my dog and connected the first syringe to the tube. She proceeded to slowly inject each drug in turn. I asked her why they did not use the dog to dose these drugs and she told me that they had to watch me carefully in case of any adverse reaction. Interestingly one of the drugs was bright red.
Once all the drugs were injected I was handed a very large packet full of pills and needles. There were pills to stop nausea, pills to protect my stomach against the nausea pills, steroids and numerous others I completely forget the reason for. The needles contained a drug to help boost the immune system. These had to be injected into the skin of my stomach every morning. After a few days this became routine and I thought nothing of it.
I only got the nausea after the first treatment. I still took the course of drugs but I felt fine. In fact two days after the treatment I felt wonderful, all the pain was gone!
The only low point was the Intrathecal injection. I had to lie on my side while the doctor pushed a needle into my spine. Even with the local aesthetic I could feel it. Unfortunately he tried twice to get the needle in but was unable to. The injection had to be in the site of the cancer and it had deformed my spine making it difficult. Thankfully he gave up and went to get an anaesthetist. He sat me up and I had to bend forward. He did it easily. They drain out the same amount of spinal fluid, as the drug to be injected this is to keep everything in equilibrium. Once it was completed I had to lie on my back and not move for four hours.
The only negative moment was after the second treatment. The Intrathecal had gone badly, they had taken five attempts to get the needle in. The morning after all my hair fell out and I felt low. I caught myself thinking I cannot do this! However the alternative was not acceptable so I made up my mind to find something to take my mind off it. The next day I brought a basket case Triumph and an Xbox. I would spend half an hour a day working on the Triumph. (It was all I could manage) I then had an afternoon sleep. When I woke I would read or play on the xbox. After a while I graduated to World of Warcraft, my warrior character was of course bald like me!
Twelve treatments later I felt really good, like I did before my arms started to ache over eighteen months earlier. After a month’s rest they then sent me to be evaluated for radiotherapy. Unfortunately because the cancer had spread and was not contained in one or two places coupled with the fact the main sites were near vital organs they could not do radiotherapy in my case.
Three months later as the radiotherapy was not possible they took stem cells from my blood. This involved an overnight stay in hospital on a drip (my hair all fell out again). Then they connected me up to a filter machine via a needle in each arm. I had to sit still for four hours while my blood was passed through the filter.
That was the last treatment I had. The stem cells are frozen for five years and will be used if the cancer returns. The third anniversary of my first chemo passed in December 08 and other then twinges in my back I feel fine. Once five years have passed the odds are the same as anyone else of the cancer returning so fingers crossed. There is one thing I have found that always lingers, when I am not feeling well I always assume the Lymphoma is coming back. I suppose it is something I will never be rid of. I try to be sensible but I find I cannot help myself. The first few weeks of March 2009 I had been suffering from neck pain. I tried to put it out of my mind. I went through a period of ignoring it. I then tried to tell myself it was only a strain or I had just slept in the wrong position.
I tend to go into a downward spiral until my back starts to ache (psychosomatic probably but as I said before I cannot help myself). So I plucked up the courage and made a doctor’s appointment.
The day of the appointment arrived and I sat in the waiting room a little nervous. I even thought that the pain was getting better and perhaps I should not have booked the appointment. Still I sat there until I was called. The Doctor poked and prodded my neck and pushed where the lymph glands are and wow! It hurt.
So he then informed me that my glands were slightly swollen but not to worry it was probably only an infection. Not to worry! What does he know? He must have seen the look on my face as he then decided to take a blood test ‘just to be sure”
I had to wait five days for the result. I have to say nothing of my second book got written at all. I did not even feel much like job-hunting either. Anyway after the five days wait I got the results and thankfully they came up clear. It was just an infection. It is surprising how much better I felt.
I suppose that even though you are given the ‘all clear’ once you have had cancer it will always be part of your life. So if you find yourself worrying about every ache, pain or sickness don’t despair you are not alone.
So what have I done that I probably would not have done if I had not suffered from Cancer? I wrote a book! www.guardianscifi.com Having got my first book published I am now on my second book. Cancer changes your life so try and get something positive out of it.
PS If you feel you want to mail me and ask questions then please feel free. Sometimes it helps to discuss things with someone who has been there and got the T shirt.