High Grade NeuroEndocrine Carcinoma of Ethmoid Sinus

Unknown Appointments - Unfamiliar Procedures - The Frustrations

When I first realised my cold-like symptoms were more serious because I had to visit the hospital for numerous diagnostic check ups and procedures whereby anti-biotic and trigger neurology tablets were not working, I then had no clue of what was going to happen next in terms of diagnosis, possible treatments and the final results.

This became a little worrying, frustrating and stressful at the same time, even with me normally being a naturally calm, easy-going, stress free, jokey type of person.

You Are Kept IN THE DARK

A lot of my frustration came from the fact there was NO PLAN given to me. Nobody told me Step #1 - Various Blood Tests, Step #2 - Various Scans, Step #3 - Various Consultation, Step #4 - Diagnosis and Step #5 - Treatments for example.

You could argue this is in part because even the doctors, nurses and other specialists do not know what THE PLAN will be as they are all waiting for schedules (your appointments) and results to be available. However, on the other hand, they have had cancer patients before who needed just the same procedures as you will get. So in reality you would have thought they would have outlined a rough plan for me with schedules.

Random Phone Calls FOR RANDOM APPOINTMENTS

From my side of the story: All I was getting were random phone calls, letters and next day 'all of a sudden' appointments where I was still left with no answers. "You need to have a blood test" - for what? "You need a scan" - for what? It was like "Do not ask any questions, just turn up for the appointment". I was expected to drop everything and immediately fill my diary with their schedules.

If my girlfriend and/or I wanted to see a solicitor about a Will, call HMRC for whatever reason(s), inform the school about appointments, arrange for a neighbour to collect an important parcel delivery and/or water the plants, we might not have had the time to do these tasks. How can you give anyone notice if you have not had enough notice yourself. Even letters were sent to me too late. I would attend a hospital appointment today, but only get a letter about it two days later.

Nobody told me anything, perhaps because they did not want to say too much, guess too much, worry me too much and so on before they received definite answers (results). This meant I would never know what to expect from one day to another and from one test to another. Furthermore, I had to wait a few weeks for my final overall diagnosis. This in itself caused stress and anxiety. Luckily I did not need a prescription of anti-depression tablets.

Answer The SAME OLD QUESTIONS

One of the annoying things about all of the procedures I had to follow was telling my story over and over again, together with reconfirmation of my personal details (name, address, next of kin, etc), to each hospital and hospital department I visited. This was because it became obvious that these departments and hospitals did not and do not communicate with each other.

Besides reconfirming my personal details on every visit, I also had to answer the questions "When did it first happen?", "Do you feel any pain?", "What medication are you taking?". In the end I just printed out multiple copies of all my personal patient details, including history notes, symptoms and medications, and gave one copy to whoever needed it. At the same time thinking: If only they knew of that thing called a database and pc network.

I agree that medication can change on a weekly basis if being treated for something new and/or as a modification for example, but not my address, gp surgery, next of kin and story of events.

They Think You ARE ALWAYS AVAILABLE

Another annoying aspect of the diagnostic process is the way they give you appointments without consulting with you first, thinking you are always available to attend them.

As an example of the just said: I often received a phone call or letter out of the blue stating an appointment date and time for the following day or day after that only. Not once beforehand was I ever asked "Are you working that day?", "Do you have children to collect from school?" or "Do you have other, more important, appointments to attend?". Even if I were to be asked (which I never was) and were to be available anytime, I would still of needed to confirm things with others in my life of course.

When I was waiting for my PET Scan an elderly patient was complaining that she only received a phone call two days before whereby it was not explained to her that she would be at the hospital for at least two hours. Neither was it explained whether or not she could take her medication before her PET Scan, in case it interfered with her scan. Furthermore, she did not bring a chaperone (her carer) because of this lack of information.

When I went to have what I thought was a one-off blood test to diagnose the condition of my kidneys, when I arrived at the hospital I was told a fluid would injected into my arm at 11:15am whereby I had to return to the hospital for three separate blood tests after that. One at 1:15pm, one at 2:15pm and the last at 3:15pm. This is the kind of thing that annoys me. In this case, my girlfriend had to arrange for her daughter to leave work early in order to collect her younger brother from school.

As a final example: I had just finished a routine radiotherapy session today when I was told I had an infusion booked for tomorrow. For what and for how long I was not told. Anyway, the following day I arrived 11:25am for my 11:45am radiotherapy session whereby the machine had broken down causing a delay of nearly two hours. After that I went for the infusion, which turned out to be a two hour creatinine infusion, which meant I did not finish my treatments until 4:30pm because of delays and waiting around for things to be fixed and set up.

Throughout the day I had nothing to eat (partly because I did not know when the radiotherapy machine would be fixed) and could only drink water. And as I could no longer gussle down water by the liter, plus I had to talk to specialists and my wife, it also meant my throat became very dry and sore. The waiting around caused fatigue and mild frustration too. I was not even offered something to eat during the day. And to shop at the hospital supermarket or have something from one of the hospital cafes, on a daily basis (just in case you might get a long day) is not cheap; especially when you are unemployed because of your cancer.

The Admins/Operators Give Out CONFLICTING MESSAGES

Often the one calling me or writing to me was just an admin and not a doctor, which meant they were not able to advise me over the phone or get a doctor to confirm a particular procedure at that point in time. In short, the specialists (doctors, nurses, surgeons, oncologists and consultants) know and do their job very well (do everything to help you), and they probably rely on the admins (management, receptionists and clinical staff) too, but the admin part of the NHS needs reviewing in my opinion.

I do not mean to sound like a whinger or disrespectful to the NHS, because I am not a whinger and do respect and appreciate the NHS for what they do, but I just think sometimes they have to remember we are NOT just "Patient Numbers"; especially when being hit by the news of having an incurable Cancer.

Nurses Vs Specialists - WHO REALLY CARES?

To highlight that last point. I often felt like the lower end of NHS staff were great. The nurses giving you blood test, chemotherapy, radiotherapy and general care for example always seemed sincere and sympathetic. As were the neurologists. However. The surgeons, oncologists, dietitians and consultants in general always seemed too clinical and only concentrated on how my tumor (cancerous tissue growth) was progressing and whether or not I was following their advice, rather than them asking me how I felt and answering my serious, important, questions.

They were not interested in how my eyesight had improved or how my headaches were, probably because they felt they had taken care of those problems by prescribing tablets for them. And they would never give me straight answers to my important questions, like "What happens if the radiotherapy does not work" or "How long would you keep me alive for if all else fails". Either way, from a research point of view and a patient point of view I would have thought they would have asked me more questions such as "How is your double vision?" and "How strong are your headaches now?".

The Specialists - DO THEY REALLY KNOW?

CT, MRI and PET Scans can never tell them how I am really feeling. Something they should acknowledge. Hence why I never really conversed with them on that level of giving info once I felt they were not interested simply because I could tell they were just relying on their scans, knowledge from previous cancer patients and second guessing how I should be feeling; even though my cancer is in a rare place with a lack of medical info about how to specifically treat it. Their own diagnosis speaks volumes:

"The chance of cure is unfortunately uncertain due to the extent and aggressive nature of the disease".


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