Sister No 1, Pat arrived with Clive as arranged. The visit had been planned many weeks ago before my diagnosis. As her daughter calls her, Pat is “Queen of the Travelodge” touring the country on special offer rooms, normally £10 a night. Can’t blame them for that, what a cheap and great way to see the country, and to see her brother of course. I had planned that we would go to Hebden Bridge, but a last minute change of mind took us over the Isle of Skye road across Saddleworth moor to Holmfirth. I love that place, and you can never visit there too much. My sister was the typical tourist, heaven knows how many photos she took. Nora Batty’s cottage, Sids café, church, river, ducks, houses clinging onto the hillside. Kind of quaint really, seeing her nearly get run over as she stood in the road to try and get a better picture. We managed to find a pub just 2 minutes before the kitchen closed. This time I decided to have……..soup of the day. Potato & Leek, I like to have a variety just to make it interesting. I think the Brummie visitors were suitably impressed with Holmfirth, and after 5 days of gloom and rain, the sun came out in their honour. Just perfect. It’s amazing how tired I get from what I used to regard as just a ride out. Pat and Clive left my house late afternoon to check in at the Travelodge, and within 20 minutes or so I was asleep in the armchair. I can’t even put it down to a heavy lunch anymore.
If I’m honest, I was pretty nervous about Thursdays hospital appointment. I couldn’t put my finger on why, maybe just the anxiety of not knowing, loss of control again. Despite closing Twitter, Facebook, TV and everything else, the only thing I couldn‘t turn off was my mind. I found it very difficult to sleep, I was awake almost hourly until I eventually got up at 4am. I even tried to write some of the blog, but nothing that came out made sense. I could not put my feelings into words. I spent some time reading blogs from other people suffering from cancer, I have quite a collection in my “BigC” folder on my desktop now. They were frightening and inspiring at the same time. In the end, the inspiration took over, and I’d like to thank each of those bloggers who have taken time to put their thoughts down. It really has helped me, and I hope me doing the same is of some help to someone else at some time in the future.
Endless cups of coffee, shower, radio 5live breakfast programme, and ironing a shirt that didn’t need ironing and it was soon time to go. Pat and Clive arrived to take me to The Christie. I had to put my brave face on. “I’m fine” “just a formality”.
Despite me thinking I knew the best route, I have to admit that perhaps it wasn’t. It was definitely the shortest, but I hadn’t taken into account the number of schools on route, with all it’s additional traffic, erratic parking, and pedestrian crossings. Maybe it was just me, I never make a good passenger. Nonetheless, we arrived in time for my appointment at 09.40am. Pat and Clive headed into Manchester and I booked in at reception. The treatment clinic where I had my appointment was packed. I’ve never seen a hospital waiting area so busy. Seats were at a premium, and as soon as one person was called for their appointment, another 5 were fighting for the spare chair. A bit like musical chairs without the music. Fortunately I was lucky and managed to squeeze into a spare seat hidden behind a pillar. Patients were being called every 30 seconds or so, the patient information screens changing like a departure board at the airport. It was a constantly moving mass of patients and staff, like a hoard of ants.
The waiting area was a class A people watching area. Well more of a listening area, I could only see about half a dozen fellow patients due to the way the seats were set out, but I could hear conversations from 360 degrees around me. It’s a bit like sitting on a bus, people talk about the strangest of things. It soon became clear that patients had travelled from all over the North. Darlington, Sheffield, Cumbria, Stafford, Leeds…they were just a few of the places I heard people talking about, and how tortuous their journeys had been, most of them daily. This was an exclusive club and I was the new member. The one thing that was clear was that everyone was pleased to be there, no complaints anywhere, and the praise for the hospital and staff was the common talking point. It was as if the whole scenario had been set up to make me feel comfortable. It soon became clear that this was a holding area, where every patient had their daily blood tests before being sent off to different areas of the hospital for their treatment, chemotherapy, radiotherapy, scans, clinics.
Ten minutes or so later my name was called. No sooner had I stood up, I could see people from all directions heading for my now vacant chair. I was led off through one of the many doors into the quiet of the clinic area for the consultant I was seeing. The next two hours were taken up with what were obviously routine tests and questions that all new patients facing chemotherapy had to undertake. Every stage was carefully explained to me to ensure I knew why these tests were being done. Personal details first with one nurse, name, address, DOB, next of kin. Ten minutes later, another nurse, weight, height, blood pressure….and so on. The stream of different people with different questions and tests seemed endless, like a medical conveyor belt, but with extreme kindness at all times. The one thing constant among the staff was their smile and good nature. Every time I was left alone in my consulting room a Christie volunteer came in, just for a chat, just to make sure I wasn’t sitting there getting bored or worrying needlessly. Today’s volunteer was Denis, a charming older gentleman. I’m always a bit sceptical about “kind” people, but I could tell straight away how genuine Denis was. He told me that there was a waiting list for volunteers, and that he always looked forward to doing his half day a month and couldn’t wait for the next one to come around. He never had his “free lunch” here, that just didn’t seem right, “there’s always a better way of using the resources” he added. He told me medical staff don’t just apply for positions, they are invited to apply. Not sure how true that is but I can believe it, these were all special people.
The first two hours passed with the routine stuff. Next came Dr A, who took a full medical history, history of my symptoms, in far greater detail than I have ever listed here. Family history, in such detail that I could hardly answer some of her questions. She wanted to know medical history of virtually everyone I have ever known ! Had they ever had this, had they ever had that, what did they die of. This was pretty detailed stuff, and quite obvious that they were leaving nothing to chance. Following the grilling, a full physical examination. She pressed places I never even knew hurt before. Checked every set of lymph glands in my body that could be felt externally. I never knew there were that many. Eyes, ears, chest front and back, heart, kidneys, liver, nothing was left untouched or un-listened to. By the end of this another hour had passed.
Dr A left advising me that either Dr S (senior consultant) or one of his registrars would be in to see me shortly. I didn’t want to be seen by a registrar, I wanted the best. It was the only time of the morning that I felt a twinge of disappointment. My disappointment was short lived. Dr S entered the room and introduced himself, first name, explained who he was and what I was here for. He was a relatively young man, early 40’s at most, very casually dressed and very easy to talk to and understand. He was the senior clinical oncologist and I was to be under his care for at least the next 3 months, after which time he hoped to pass me back to my consultant surgeon. It was his job to shrink my tumour as much as he could, and kill as many cancer cells as he could with as little damage to the rest of me as he could. The better job he could do, the easier my subsequent surgery would be, and the better chance of a full recovery I would have. He was honest and frank, answering every question I could think of. The tumour was solid, and deeply embedded into the tissue and organs surrounding my bowel. It appears that the cancer has spread to lymph nodes in the area, but these would be removed during surgery anyway as a matter of course. The lesions on my left lung and liver were a concern, but not unusual. The chemotherapy drugs should take care of these, and scans and tests throughout the chemoradiation would keep a close eye on what was happening.
The treatment for this type of tumour was pretty standard. Chemotherapy would be in tablet form. This was a relief, no invasive tubes or daily infusions/injections. Radiation would be given in 25 doses. Monday to Friday for five weeks, weekends off to rest. He explained the side effects of both chemo and radiotherapy. There is no standard when it comes to side effects. Some people sail through it with hardly any, others can have a pretty bad time, but it’s down to luck. Whatever, any serious side effects can be controlled with more drugs. Then came the surprise of the day. I was being invited to take part in a clinical trial of a new drug, that would be administered alongside the standard treatment. Research and earlier trials had indicated that the new drug, known only as AZD6244, interferes with the mutation of the cancer cells and somehow prevents the signals telling them to divide and multiply getting through. The drug had been tested, and the new trials would be to investigate what safe level could be given to patients. I would be on a low dose of the new drug. Dr. S explained in detail, drawing diagrams of the molecular structure of cells, and how cancer affects them, and what the new drug does. This is pretty complex stuff, but he went to great lengths to make sure I understood. My tumour met the precise conditions that were needed to test the new drug. Taking part in the trial would mean more tests, more regular scans, blood tests etc.etc. My biopsy was being sent to pathology again to ensure I would be suitable, and as long as everything came back ok, I would be one of only eight patients in the UK testing the new drug. He left me with piles of information sheets on both the trials and standard treatment, and he would personally telephone me in the following week to discuss whether I wished to take part in the trials. When my chemoradation starts is now dependent on whether I take part in the trial, but either way, everything should be underway within 2 or 3 weeks.
One final set of blood tests, and a prescription to aid my digestion and I was almost finished. Pat and Clive were now on the way back from Manchester and by the time we had a coffee in the hospital coffee shop my prescription would be available for collection.
I was soon home, Pat and Clive were heading back to Birmingham and I read through the 20 pages of A4 documentation on the drug trial. Asleep in the armchair again, soup of the day, I laboured through a couple of hours TV and ready for bed again by 10 o’clock. I was exhausted. Slept right through the night, 10 hours sleep that was very much appreciated.