Life – Terror. Ecstasy. Fight. Denial. Flight. Failure. PAIN. Forgiveness. Reconciliation. Hope. Love. Peace – Death
I have incurable cancer.
I want to live longer than my predicted life expectancy.
(Currently) I have a 3% likelihood of being alive post 2025.
So far, I have had four consultants (oncologists) in charge of my cancer treatment plus another two transient consultants (consultations) and several specialist nurses. At no point when I have been transferred from one to another has this ever been explained to me. It just happened. You are now ‘under’ a new Doctor (or Mister).
It is really difficult to contact a (your) consultant outside of any standard appointment schedule, which is currently every 12 months, if you are lucky. 12 months between consultations, sometimes punctuated with 6 monthly specialist nurse, telephone conversations. TEAMS, ZOOM, effective meeting technology is not by my NHS care team? I have never had more than a standard telephone consultation? Why?
Opportunities to ‘connect’ with a (your) consultant are limited to; scheduled appointments? If you need to operate outside of that schedule, for any reason, an emergency, an enquiry for example, about a new treatment you have heard about, a clinical ‘Trial’ opportunity, your only options are – writing a letter (to your consultant via your clinic/hospital), possibly email (if you can track down their/an email for them), often the only way is to research their ‘private practice’ profile for an email contact?
You will not easily gain access to an email/phone contact via a Doctor/consultant NHS profile. You can try phoning their clinic (hospital) and asking to be connected to their secretary? Most will have two secretaries, one for private patients and one for NHS.
Although my prognosis is less than optimistic I am constantly looking for a cure. I am proactive with my approach to this. I constantly researcher. It is a fast moving area, a movable feast. I try to keep up-to-date with developments within cancer treatment, I explore them as I have a vested interest. Survival.
My research has led to some positives for myself – alternative remedies, treatments, why not? Anything is worth a try, right? Advanced treatments, as in I have been given access to treatments that are not normally applied to prostate cancer, I have had to fight for. This has led to respect from stakeholders. People, who are responsible for my care, take me more seriously, are less dismissive, work harder for me?
Sad but true, unless you stamp your feet, make a fuss, ‘kick-off’ a bit, be that awkward one, do not take no for an answer you get fuck-all? I am not comfortable being that person, but, I am not comfortable dying either.
A short recent (case-study)
Two days ago, I read an article about the development of a cancer vaccine, by a company based in the UK, Oxford Vacmedix Ltd.: harnessing the power of immunotherapy to treat and monitor cancer. They were at the point of committing to the first UK in-human trials of their OVM-200 therapeutic cancer vaccine.
I tracked down the full trial details via an American international trials registry/directory, CliicalTrials.gov. I was able to access my eligibility (to a point), via the comprehensive details provided. Such data bases include specific contact details for those directly involved with the facilitation and delivery of the specified trials.
My next moves
I elected to contact the trial co-ordinators directly, sending them my treatment and diagnosis summary profiles and expressing a keen interest in their research. I have done this several times now and have been surprised (rewarded) by prompt replies, straight from the horses mouths.
I sent several similar requests to other trials that I identified with two extremely positive responses already, just 3 days on.
The Oxford Vacmedix reply was extremely positive requesting additional information and the opportunity for the principle research Doctor to speak directly with my consultant, to access my eligibility for their trial. Easier said than done.
I have no (direct) contact information for my, current, principle oncology consultant.
Further Research – I tried but was unable to find an email for my consultant. even via his private practice profile. Plan B – I rang Clatterbridge Hospital and asked for his secretary.
I spoke with his secretary, (trying to) explain my query.
She was a little ‘short’ at first, explaining that ‘trial eligibility is highly specific and complex’ I acknowledged this (‘I know this’, I am not daft)), she replied ‘you would need to book an appointment with Dr Eswar’. I asked ‘when would this be?’ she replied – ‘the earliest available appointment would be mid January’ I explained that might be too late for this trial selection.
She said I could email her the details of the trial and she could ‘have a word’ with Dr Eswar. I sent her full details (including direct web-links) and also the positive reply, expression of interest I had already received from the trail facilitators.
I also emailed Oxford informing them that I had passed their request on to my consultants secretary. I copied her into this email, deliberately, ramping up the pressure to persuade her to do what she said and have a word with Dr Eswar.
She got back to me the next day. Her email (attachment) was a detailed extract from my treatment records (which I already had). Titled – Dr Eswar letter attached.
I could not find any letter just my treatment records.
I replied asking for clarification? She replied stating the letter was on page three of the document. I checked – their was one line, not quite a sentence that didn’t make sense (it was incomplete). Again, I asked for clarification. She replied ‘that without full trial details it was impossible to establish eligibility, Dr Eswar will be on leave from Thursday (today is Tuesday) and will not be available until Mid January 2022. He would not have time to contact the trial Doctors on my behalf.‘
I replied, reminding her that I had already sent full details of the Trial (a weblink) within my initial email. I cut and paste a summary of such and included this within the text of this, latest, email.
My point is this
I know that she must deal with cancer patients every minute of every day and this must be overwhelming as must Dr Eswar. I get it. Most trials would not be accessible and I am just another thing ‘they’ have to deal with in an already busy day? I get it. However, this is not acceptable to simply dismiss my (any) requests for help? She/they hadn’t even read what I sent them properly, making more work, revisiting my request?
That is not good enough?
For me, this is literally life and death, I expect, no, I demand more. I demand a chance, I demand respect. She presumably revisited previous emails and finally sent me a direct quote from Dr Eswar that basically said it was not up to him to decide my eligibility.
‘If you can tell him that it would be for the study investigators to look at the referral and decide if he meets criteria and it will not be for me to decide’ Dr Eswar
I forwarded his comment to Oxford including the additional medical information he had initially sent. Oxford have replied, the principle Doctor in charge of the trial recruitment, suggesting this might be enough in order to make an eligibility assessment and that they would forward this information to the relevant hospital (The Christee, Manchester), who would be in touch.
Fingers crossed.
Seven consultants in 6 years and not once have any, proactively, approached me, voiced the subject of Trials and or other advanced treatment options? Sadly, it seems you get nothing unless you are prepared to stamp your feet and push? I am not that person but desperate times make for desperate measures?
We get one life brothers and sisters and it is up to us to fight for it?
Thanks for Reading
Peace
First-in-human Study of OVM-200 as a Therapeutic Cancer Vaccine – https://clinicaltrials.gov/ct2/show/NCT05104515?cond=Prostate+Cancer&cntry=GB&city=Liverpool&dist=300&draw=3
Dying to Live 