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Diary

A series of scans and blood tests. Take my blood. Do what you need to do. Just tell me what this thing is! Please…

I tried to get back to reality.
The reality is though, that I could not discern reality from fiction.
So now, following on from my recent post…
I spent the next few hours calling my close family and telling them the news. Crying and feeling scared out of my mind at what was to come next. Truth be told, what was to come next was a series of different tests and blood samples. I had a lot of blood taken. Then I get a letter through the door asking me to go in for an MRI scan of my brain to highlight the tumour and show precisely where it lay.
The MRI scan is a big machine and makes a lot of noise. It also passes X-Rays into your body, so already I am being radiated! Woohoo..! (Note the sarcasm). Anyway, this scan is different from the CT scan as they inject some sort of dye into my bloodstream in order for it to show the tumour more clearly and so that they can overlap it with the scan they have already. This gives them a much clearer picture and shows the depth of the tumour within my brain. I pass through this loud and whirring machine three times and then on the third or last time, the nurse comes into the room and tells me he is injecting the dye into my arm. That I shall have the sensation that I might be peeing..! But not to worry as I will not actually be peeing my pants. It is just a symptom of the dye. I pass through the MRI scanner one more time. Then rather quickly I am whisked out of the room as the next patient needs to have their scan.
I am told that my scans will be ready for review as soon as the neurologist has viewed them. So I and my partner went home to relax as best we can and await the call or letter asking us to come to the hospital to discuss the scans.
I spent the next days, sleepless, mind full of doubt, worry, fears and abject terror brimming and spewing forth from my mind without end. It took a week for them to review my scans and a letter arrives through the post asking us to go to Derriford to meet the Neurosurgeon and finally get the long awaited news, the final and defining truth about what this tumour is and how it will change my life!
The answers I get are still, as of yet, unclear and inconclusive, but they are eye opening. The doctor tells us it is an abnormality of the right parietal lobe, but there is still uncertainty as to whether it is a tumour or a cist or just some random occurring inflammation. What is clear though, is that there is more than one area of uncertainty and abnormality.
He shows me the scan. There is a clear white orb about the size of a penny within the sensory part of the brain and aside from this there is also a dark shaded patch where there is definitely more abnormality occurring, but that it must be deeper or undeveloped.
So still, not a clear answer and not a cease for my worries. He suggests that we do another scan to determine whether this is a primary tumour or a secondary tumour that is a bigger and more vicious culmination of tumours riddling my body and has spread from my body to my brain. This is an extremely scary thought.
He books me in for an MRI scan of my torso the following week. This scan is similar to the MRI I had before but it is a slightly different procedure. They still inject dye into me and this time I must hold my arms behind my head and breathe in every time I go into the machine, and exhale when I come out. This is so my organs show up clearly. They inject the dye around the same time as my head scan and I am hoping that this scan shows up negative, no tumours!
Another period of waiting, restlessness, doubts and fears. Always, doubts and fears, for of course, we have been fed information about cancer for years. Its vicious, it kills, it’s a murderer! So of course. I am in the darkest of gloomy places with little hope and no invigoration for life, but somehow I still cling to hope. Amidst this shattering fear is a light in the darkness. A small inkling that it could all just be a dream, an illusion. I am also just hoping that I have gone mad, loopy. Not all there… A shadow of what I once was.
Another week passes and I get called in again. I meet with the neurosurgeon, once again. He is able to confirm that I do not have cancer in my organs within my body, that in fact, I am darn healthy!! Fantastic, a bit of positivity amongst the gloom.
The prognosis is now, that I have to have a biopsy. Which is an operation to determine what grade of tumour I have. They take 4-8 samples of the stuff in my brain, known as a tumour and, if successful, they will identify it as a grade of tumour. Once again another 2 weeks of waiting. Of them preparing themselves for my operation.
The day of the operation arrives. I was not allowed to eat beforehand, so my last meal was at 6pm the night before. I am almost excited to finally be getting to the heart of this thing. I have my dressing gown, my slippers. My wonderfully supportive and loving life partner keeping me strong. We wait, and wait, for hours, 5 in fact. There was a lot of trauma patients arriving that morning so the surgeons had their hands full.
I finally go in around 2.45pm in the afternoon, on the 16th September 2014 for my brain biopsy. I say, what feels to me, my last goodbye to the one that I love. Regretting that I did not hug her nor kiss her more passionately. But now I am walking towards whatever fate life has brought me to thus far. I enter the anaesthetists room and they start with small talk to keep me occupied, they then ask me all sorts of questions, “nice tattoos, what do they mean?” “Are you afraid of needles?” and so on and so forth. They stick a needle into my arm and hand so they can administer the anaesthetics. They inject me with something that gives the feeling of being super doper drunk and I start finding things rather funny and amusing, then, in the next moment, I am waking up, in a kind of hazy daze, really needing to wee and wondering, what on earth am I doing in this weird place?
The nurse tells me I am okay. The operation was a success. They got the samples. I reply, “Okay, so when will I know the prognosis, also, can I please have a drink?”
Now, according to the nurse who was caring for me. Patients don’t normally leave the hospital in the first whole day after an operation. I managed to build up my strength and get sent home the next day. I ate food and drank fluids and even stood up within the first few hours of consciousness.
I arrive home, hobbling and not quite steady on my feet, to await the final outcome of this operation. I feel that finally, I am getting to the heart of this thing.
It appears to be, that hospitals work on a fortnightly basis. I say this because it took another painstaking two weeks for them to get back to me and ask me to see the neurosurgeon at Derriford Hospital. In these two weeks, I slept very little due to stress and worry. I tried to research cancer as much as possible, (the internet is a terrible place for making you paranoid). The steroids I was on, (to reduce inflammation), made me bloated and I put on weight, they also gave me a spotty forehead which I am still recovering from a month later! It messes with the natural order of the body.
I get the telephone call from the neurosurgeons secretary. To attend a meeting with the doctor to find out what the score was in regards to my brain and I have a date, finally! The 29th September 2014. I feel a flood of relief. All this waiting, all this anxious and debilitating waiting. It is finally over. I start to realise in my soul, that this is the place I was meant to arrive at. I had been guided to this point in my life.
The day arrives. My mum and partner come with me for moral support. We arrive in the waiting room. Lots and lots of waiting in these hospitals eh… We get called through to the interview room. The doctor gets down to the grittiness of it. No messing around. He understands that I have literally been going out of my mind with worry.
He starts by showing me the scans of my brain. Telling me where it is located. What they thought it could possibly be at the time it was taken. He then tells me, “due to its location, it is likely inoperable, as it could do more harm than good”. “There is also another shady area, which is in the motor function part of your brain and we dare not operate on that as it could debilitate you! As in, make me disabled on my left side. Paralyzed.
(I completely forgot to mention that, as the tumour is on my right side, it affects my left body. It is why I have the seizures on my left side rather than my right side). Crazy stuff!
The defining moment arrives. In its totality, this is all my mind has been focused upon, this moment. The prognosis.
“Pablo, I am sure you would prefer that I just tell you exactly what this tumour is, it is malignant, meaning that it is cancerous and it is an aggressive form of cancer. What this means for you, is, that, seeing as we cannot operate, we would have to put you on a course of Radiotherapy and Chemotherapy. This is a form of X-Ray that would penetrate the cancer cells and exterminate them. This also comes with risks, such as hair loss and infertility…!” (WHAT THE F*~#!!!)
I do not know why, but I asked him probably the scariest question I could ask, one that had been praying on my mind since I first started researching tumours… “What Grade Of Tumour Is It?” “Is it a grade 4 glioma?” “The highest grade of tumour?”
“Yes, yes it is Pablo, I am sorry to say that it is!”
Fuck it! I burst out crying, but only for a brief moment, then I realise there are other people in the room, my loving mother and beautiful girlfriend. My mother has a brave face on, I can tell it is for me. My partner is brimming with tears and looks about to faint and I realise. This is a bit shit isn’t it!!
My immediate concern is to console my partner. I don’t know why I do this as I’ve just found out I have a supposedly incurable brain tumour. It is strange what we do in moments of life and death… I felt the need to be close to her and to make sure she was okay.
I start to feel like it’s all doom and gloom and then suddenly, all the feelings of woe and all the pain I had been carrying as a burden all my life, I could drop it, just let it go. Take part in my ego no more.
I felt a spaciousness occur inside of me, at my core, the essence of my being. A big space just opens up and I feel a clarity, a clairvoyance, a feeling of “I am okay with this, this is a chance for me to love my life and enrich it with this love for as long as I may live!” I felt that, before this moment, if I got the worst case scenario, I would end my life, I would give up on everything, anything, being good again. But somehow. I didn’t do this, I just opened up to what was, in that moment. I felt that to waste what I have been given. The absence of fear in me became a light that I will never lose.
I was given a death sentence and I realised that I didn’t have anything to be afraid of anymore!
Haha! What a life eh!
What a glorious life.
We all have life. We are life in action and we forget this, until we wake up to it!
With love and light,
Pablo Isaiah Kelly

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