I made a number of posts about the diagnostic phase I went through before treatment. These posts are lost in the bowels of what is a date ordered blog, so I thought it worth adding a page so that the infromation is easily retrievable for anyone who may be searching the internet on the subject. It is something that I have been meaning to do for a while but have been catalysed by the questionaire query that landed in the comments of one of my posts.
I'm feeling far too lazy to write this thing from scratch so I thought I would collate the links with a little intro comment and tackle the harder job later. Not all of the content of each post will be relevant but it will illustrate that thought process that I went through up to being given the clear from the dreaded possibility of secondary cancer.
I have omitted the usual peppering of humour so that it reads straight through as a source of information
I start at a logical point, where the "Leading up Diagnosis" page leaves off i.e. after the endoscopy, CT Scan and being told that I had being diagnosed with cancer of the oesophagus. Most of the subject is technical but that is appropriate because that is what I went through both physically and as an attempt to get through and come to terms with my diagnosis.
Of course this whole phase is an emotional rollercoaster. The not knowing whether there is secondary cancer is the most "trippy" part of the whole experience and you just have to deal with the fear of that situation. Everyone will deal with that in their own way but I don't think it would be healthy to go through this process without accepting it as a real process. I entertained the idea whilst staying optimistic that I would escape that ordeal and was lucky but, rather than live in denial, I used this time to deal with the financial and procedural issues that possibility could throw up.
It was during this period that by entertaining the worst possible outcome I was able to draw strength from the situation. By accepting the possibility of worst it is much easier to gain benefit from every bit of good news. That is why, when asked, I always describe my attitude as "pragmatic but optimistic". I prefer that to the "ooh you have to keep positive" mindset which is borne of good intent but perhaps is less influenced by direct experience.
These were turbulent times for me and a direct contrast to the much calmer waters that I am in at the moment.
One of the most difficult things to get to grips with is that you are swamped with information at a time when you are most vulnerable. There are two real choices; you can either just go with the flow and let the system sweep you along paying lip service to the questions that are asked of you or you can do your homework and elect to put yourself in a position where you can retain some semblance of directing the traffic around you. In truth I don't think that one approach is better than another. Being ill-informed might mean that you later regret your choices but being well-informed does not guarantee that you make the right choices and it can also make those choices more difficult to make, making you less relaxed.
What you do depends on how much control you want of the situation and it suited me to try and retain as much control as possible. From the outset I regarded what faced ahead of me he as a spiritual, emotional and mental journey as well as a physical one. Once you are diagnosed with an illness you know that it is there and part of your life so, for me, it is better to embrace it and understand it.
After diagnosis at my local hospital I was lucky enough to have my case passed to the specialist Marsden hospital and my first post after my initial meeting with the head oncologist of this field shows that I was making an attempt to understand the process that lay ahead. My case nurse had told me that there would be a "battery" of tests. I felt it my reponsibility to communicate the detail of the process to those close to me.
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Back From Hospital
There wasn't much hanging around before the first procedure two days later. What was refreshing about this was that they organised the scan at a private clinic because their resources were fully booked. This action made me feel that I was being dealt with in a way that there was a sense of urgency. My biggest fear at this time was that the cancer would spread in a critical way whilst the diagnostic process was followed.
It is significant to realise that whilst you don't read pleasant things about chemotherapy and don't really understand it before you begin treatment it is natural to be impatient to want to begin treatment as soon as possible. This has to be weighed up against the team's need to get to the bottom of your condition. It was also worth noting that although anaemia that uncovered my illness was improving it still had me not feeling great.
Pet Scan and Meeting the Surgeon
The following post gives an insight into the emotional turmoil that surrounds diagnosis. The page on Leading up to Diagnosis covers some of this ground because after the results of the initial endoscopy it was clear that there was a major problem. The following post "How Am I Feeling" covers some of the aftermath and was written a little while after the event (so it is somewhat reflective) .
The first time that I encountered real fear was on the day that I went for an MRI scan. I had some blood tests and a heart test (ECG) and my fear was precipitated by poor hospital procedure rather than reality. This is something that is the exception at the Marsden but is indicative of where problems can arise in a multi-team structure where comment is offered before a situation is properly analysed.
"My First Appointment With Dr. Fear"
Often in life there are low points before highs and the next post is brief and covers the news surrounding my MRI scan. The MRI scan of the liver covered one of the two areas of possible secondary cancer The message is brief and to the point.
"De 'Liver' ing Good News"
After the liver scan all-clear there only remained one area of concern; the abdomen. It is important to recognise that if secondary cancer was found at either of either of these two sites then the Marsden were not prepared to operate and that meant that I was effectively being written off.
The investigation of the abdomen meant that I would have the first intrusive procedure since the initial endoscopy. The procedure would mean that I would have an anaesthetic and key hole surgery.
The following post covers the initial preparation for this and also a scan of my heart and kidney tests. The heart scan was provided as a safety net for the trial which I was considering participating in. The trial involved the use of the bevazicumab (Avastin) drug and it is considered importan to monitor any potential effects on the heart. This post is entitled "Radioactive" because like the PET scan it is a nuclear scan involving the injection of radioactive material.
The weekend before the laparoscopy took I went away and there was much humour and event, which helped to take my focus away from the fact that this was the point at which I knew the path that lay before me. Either, I would be clear of secondary cancer and would proceed with an operation or the situation would become much more difficult for me and everyone around me.
Having been away for the weekend and into work on the Monday, the realisation that this was it hit me hard on the night before the laparoscopy. The following posts cover the fact of the situation and also my underlying mood, which was of worry but acceptance. I had dodged the worry up until now but this was the right time to be worried i.e. at the point that I would find what the fates had in store for me
"Tomorrow's the Big Day"
"The Spirit of Change"
The people who are looking after me are at the top of their profession, so their verbal opinion on what the find in an investigation such as a laparoscopy is of great insight but must still be verified by a biopsis. The following post covers the detail of the laparoscopy prodedure and also the view offered to me after the procedure had taken place. Although not conclusive it gave me reason for cheer
"Good Dope - It's a Gas"
The big news followed a few days later and my relief is evident.
"No Secondaries Found"
It's easy to not get carried away because even though not having secondary cancer there are still issues to deal with! I felt calm though and ready for the challenge.
"Absorbing the News"
It was at this point that I started to look at the wider picture and there were issues on the horizon such as deciding whether or not to participate in the ST03 Clinical Trial. The following post shows me trying to put a structure on the whole process. Blogging the process meant that I had to think it through and articulate it properly, which was a useful exercise in itself.
"Planning the Next Phase"
I start being technical by learning the choices and process thoroughly.
"Down to Business - The Treatment Programme"
And continue to read up on the standard chemotherapy option and its side effects
"ECX - Standard Chemotherapy"
And then the trial drug on offer - bevacizumab (Avastin).. Note that I enlisted the help of others to give me a balanced viewpoint
"Trial Drug - Bevacizumab (Avastin)"
It's easy to rock the boat and the last cog in the diagnostic procedure was postponed, causing me to fret about needing to get treatment underway as soon as possible
"A Dampening of Mood"
I needn't have worried as the Marsden got on the case straight away and got the date rearranged quickly. The endoscopic ultrasound that I was due to have is a specialist procedure and the man responsible is much sought after!
"Temperance - I Kept My Cool (Just)"
The last cog in the wheel is in place with an OK on the endoscopic ultrasound front. The tumour is operable but bigger than anticipated.
"Endoscopic Ultrasound OK"
During this period the cancer was starting to have a noticeable effect on me. I was getting tired quicker and was starting to experience pain from the tumour when I was tired. I was glad to get to the point of treatment.
