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OUR RADIATION STORY

Investigative Procedures and Events leading to hospitalisation on 3 April 2023 and follow up developments to 16 October 2023.

All Comments attached to events are mine and appear in italics throughout in order to provide an observation of what went on during each event as they occurred.


Diagnosed with Gleeson 9 Metatastic Prostate Cancer
Hormone Treatment
Self Discharged on treatment side effects
Diagnosed with T3b Gleeson 4 Metatastic
Prostate Cancer
No treatment
Hospital Events
Admission to Southampton General
Pain in Lumbar Vertebrae
MRi Whole Spine Scan
Overnight stay in ward
Consultation in ward with oncologist on results of MRi showing possible lesions at various levels of spine
CT Whole Spine Scan
Radiotherapy L2 - L4 - 2 minutes
Overnight stay in ward
Discharged late afternoon

Pain eliminated in Lumbar Vertebrae
Extreme pain and burning sensations developed
in various parts of the upper back.
The only way to relieve pain completely was to lie down on my side as I could no longer lie down on my back.
My general movement and flexibility were severely impacted during this time and my general ability to function normally reached the point of worrying disability. Forced to move into a spare room to manage.
Not informed of need for not 1 but 2 overnight stays.

21 April

Comment

Consultation with Oncologist.
Made to sit over 10 feet away from him.
Refused to show any MRi results on the basis that they were not clear enough and he couldn’t comment. Still no pain in lower back vertebrae.

Learn for the first time of the existence of radiation pain flares and how painful they can be.

Was told it was pretty rare and it turned out to be a common occurrence.

Also assured that the radiation pain flares would soon pass and in my view they haven’t as they still flare up and move around my upper back.

Not provided with any idea of radiation pain flares on the list of possible side effects of radiation treatment.
Pain Management was now in place.
Pain centres still moving around mostly in the rear left area of the ribs.

Not used to prescription pain killers and their side effects, they began to play havoc with my stomach.
Along with how much pain I was having in my back this month was one of the most physically painful I had ever experienced.

When it became too much for me I would lie down and all the pain would disappear.
Visits by the brilliant pain management team of medical staff from Oakhaven began who changed the type and dosage of medication helped to improve things with regard to pain and over this month resulted in better flexibility and functionality.

During the months of May, June and July I experimented on seeking the answers to the way my body was responding to the medication and how it was affecting me literally on an hourly basis.

At times I had to force myself to eat - thankfully always home cooked food with fresh fruit and raw vegetables as much as possible.
I was a pretty fit and flexible martial arts teacher before all this started and I began to painfully try out some easy stretching and strengthening exercises to help improve flexibility. And slowly - ever so slowly - my functionality became easier and I was able to return to my daily meditation practice over this time.

I discovered that radiation pain flares do sometimes pass quite quickly but they can be around for years also.
And when I asked how they could tell whether the pain I was feeling was from radiation or from cancer - no answers were forthcoming.

I was greeted with the same response when I asked why the pain disappeared soon after I lay down to rest - they

didn’t know. Or rather, it appeared to me and my wife that they felt they were not allowed to say. Nevertheless, it still made us feel uneasy.

Telephone Consultation with Oncologist.
What little he could deduce from the MRi report, also

pointed to the existence of lesions on various vertebral levels of the spine.
He suggested various treatments such as HRT and others. I thanked him and declined on the grounds that I needed to have closure on what was causing my current pain before it made any sense to do anything else.

This oncologist was horrified that we had not seen any of the MRi images taken on 3 April. And he assured me that when he sees me in clinic he will take me through them. He was also unable to comment on the cause of the pain. And similarly, no answer to the question of why the pain ebbs away upon lying down.

PSA down.
Testosterone down
No prescription medication being taken.
Unable to see original MRI images despite being told they will be available.
Blistering of the tongue via a shooting pain that flares up with no warning. We showed him a picture of the blistered tongue taken around midnight a few days previously.
He again suggested various treatments such as HRT and others. I thanked him and declined on the grounds that I needed to have some satisfactory answers to what was causing my current pain before it made any sense to do anything else.
Arranged to have a CT Scan  and compare them with existing scans.
He had no idea why my PSA and Testosterone levels were down and more so, as I was not taking any prescription medication.

He told us that he had never seen this before.

He also couldn’t tell us whether the source of my pain was radiation or the cancer or even a mixture of both.

And also he had no answer to the question of why the pain ebbs away upon lying down.

And he had no idea what had caused the tongue to blister.

He kept on asking irrelevant questions like my flexibility and functionality, which in the circumstances just didn’t seem right.

In fact in retrospect the entire past 6 months seemed peppered with unanswered questions and feelings of there

was an elephant in the room which everyone was ignoring except for me and my wife. The radiation flares.

CT Scan

I was either first or second in the line for my CT Scan that morning and it wasn’t long before I was in the waiting room so the nurses could see all was well for me to go.

Whilst there I asked one of the nurses if a certain radiologist recommended to me would be in that morning and I was told that he was in and would “probably” be doing my reading.

I was very pleased about that as it was not only a different hospital doing the scan but a different pair of eyes as well.

In the event I was informed that the scans were sent out to a 3rd party company instead, which is not the normal procedure.

Another feeling of “something not quite right”.

Images of CT Scan up on 2 screens which he referred briefly to claiming he was a Medical Oncologist and not qualified to use the images prognostically.

Didn’t get a good look at a vertebral image of the whole spine so could not see any clusters or evidence in the lumbar area at all where there is no further pain.

He was unhappy with the Radiology Report sent in by 3rd party company.

A new radiology Report has been requested and a telephone call from the oncologist would be made

to us early the following week to discuss their findings.

He again suggested various treatments such as HRT and others. I thanked him and declined on the grounds that I needed to have some satisfactory answers to what was causing my current pain before it made any sense to do anything else.

This call was never made as promised and no call has been received to this day of 16 October 2023.

I did suggest our radiologist again in an email on
27/09 and was told that Oncology department have a “multidisciplinary team so have expert knowledge and will be able to look at your scans with that expertise” .

Although it is common to outsource radiology readings, with all that expertise in house I did wonder why they needed an outside company to do the first reading?

SUMMARY

Didn’t get a good look at any vertebral image of the whole spine so could not see any clusters or evidence in the lumbar area at all where there is no further pain.

And nothing on a spinal image of the upper back where there is pain.

The overall view would be that there is very little conclusive information to work with.

In fact it appears that right from the outset during the consultation at Southampton General on 21 April, the intention was to obfuscate matters, rather than to clarify them.

This was the meeting at which we were first introduced to radiation pain flares by the Oncologist. An occurrence which was contradictory as this particular side effect was not “rare” but relatively common.

It was agreed at another consultation on 9 August to have a second opinion with a CT scan of the upper back.

We understand that these scans ware sent to an “outside company” for a reading, which is quite common yet it still appeared to be unusual as were were told that there existed access to highly qualified medical staff to complete this task in-house.

It all just seemed vague and evasive.

In the event we have had no evidence of this reading other than the fact that the Oncologist was unhappy with it and would call us the following week and update us with a new reading.

No telephone call has been received.

And whilst we both have no medical expertise, my wife and I felt that at times we were both being excluded by the absence of certain expertise that we couldn’t understand and that has yet to be resolved.

As a result of the foregoing, we are left with the feeling that something unexpected happened with the procedures  which have yet to materialise and to be satisfactorily explained.

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