Small recap on my last blog, I rarely write two blogs this close together but the situation from Friday created this. Basically I had a procedure on Friday Sept 27th 2019 which entailed injections to my right eye. I constantly within this blog & through coaching encourage patients to tell medical staff of any issues no matter how embarrassing, humiliating or even minor they maybe. I explained to the Ophthalmic what had happened the previous day and since we met last week. He examined my eye and excused himself and left the room. He returned momentarily with a deep pressure scanner that gives Ophthalmic greater scope to see the back of the eye. I got a strange feeling all was not well.
However he proceeded to inject the right eye 5 times. My eye was numb so all I really felt were tiny stings. It took seconds and the Ophthalmic must be the gentlest person I have ever met. He placed the bandage/eyepatch over my eye and helped me sit up. I spotted members of my oncology team behind him and thought “Oh fuck”
He explained that when he had left the room he had called the team, he had deep concerns about the events of the week and he had spotted issues of concern behind my eye. He advised me that my oncologist was away till Monday but he had spoken to the replacement consultant who instructed my immediate admission to the cancer care center.
I had been prescribed a Valium pre operation which had kicked in fast. I don’t think I have ever taken Valium before so the tablet was in full swing when the Ophthalmic told me I was been admitted. I’m known to be quiet cool head under pressure so the additional medication really helped- but I was been admitted to the cancer ward for high dependence advance chemotherapy- a very dangerous place. It was the ward that I had ICE chemotherapy & had been classed as terminally ill. I battled Non Hoskins in this ward 2 years ago and counted myself lucky to have walked away. But you can imagine how my mind responded to going back here over two years later. This all happened in minutes and I asked them to allow me time to go out and tell Anita who had no idea what was happening. Every second counts at this level.
I walked out to the waiting room and waved Anita over. She came over to me smiling and said “All finished?, let’s go” as I said above I can be quiet direct and the Valium helped I responded with “Brace yourself, I’m been admitted by the oncologist we have to go to the ward” I rarely ever see Anita react to situations but this one hit her hard, her arms dropped her face went white and rigid. She was in shock. Like myself she knows the way the oncology team work and for an immediate admission it could only be considered as critical. But before another word was spoken we were ushered to the ward. Firstly we were told that I could be in for days or for the foreseeable future, then I had multiple blood test. I was then informed that I was to have a high definition CT NTAP which meant drinking 2 liters of contrast dye over two hours.
We live 40 minutes from the hospital and when we left the house that morning we only expected to be home by lunch. No overnight bag or anything. So I suggested to Anita to head home, pack a bag and come back in 4 or 5 hours. Just as she was getting up to leave a team member came over and suggested to pack a bag for a lengthy stay.
Cutting a long story short I drank the liquid over the two hours and was brought straight to radiology and scanned. I was then brought back to my room.
Over 5 years of treatment I am well used to waiting for results, so results come quick, some slow and others can take months. Anita returned and came into the room. She looked terrified. The Valium I had taken that morning was still very active. Two hours later the replacement oncologist walked in and introduced herself. Her first comment was that she had a complete understanding of all treatments I had received over the past years, she had a great interest in my case and within oncology circles I was well know. Not really that surprised as my original diagnosis was rare and surviving everything has only been achieved by one other person worldwide.
It was obvious that this lady not only knew about my medical history but she was fully aware of my medical understanding and ability or need for straight talking. She advised that my blood test were excellent but with an elevated ESR (An erythrocyte sedimentation rate (ESR) is a type of blood test that measures how quickly erythrocytes (red bloodcells) settle at the bottom of a test tube that contains a blood sample. Normally, red blood cells settle relatively slowly. A faster-than-normal rate may indicate inflammation in the body) but the elevation was not high enough to cause serious concern. She continued to say the results of the CT N-TAP were also in, overall it showed no sign of reoccurrence (I took a very deep breath) but and in advance cancer cases there are always but’s- some results were inconclusive. Inconclusive basically means unexplained requiring further investigation, I’m used to this. As above this is a very rare form of Hodgkins so the medical team have no one to compare me to, the other survivor is two months behind me and the fact she is 1/2 my age means the chances of comparing is impossible added to this the way Hodgkins attacked her and the areas that were stage 4 differ. Inconclusive is fine with me. The great part is that even with the inconclusive findings it is not a reoccurrence. What they believe is that the current issue with my eye is the direct result of the initial attack in 2014. And they are now preparing to do a contrast brain and eye MRI.
To give you an idea of timeline here. I entered the hospital at 9:56, I was taken in for the procedure at 10am at roughly 10:05 the Ophthalmic had started the alert. By 10:12 the procedure was done. By 10:40 I was on the cancer ward and they had commenced blood test- by 11:30 they had arranged the CT NTAP. At 2:30 I was scanned. By 3pm I was back in the room and by 7pm they had the results. 9 hours. That can only mean that the pathology unit had gone flat out to get answers and a senior radiologist had completed a full report on the scan. As a patient we don’t see this but once an oncologist hits the urgent button everyone responds. Hours and minutes count here and the difference can be life or death.
Basically the initial scare is over but there are a lot more test to come. It is vital that the team learn from this, it will help others.
The biggest concern on my side is that they are now starting to look towards occupational or work related stress. There is absolutely no doubt that my job is stressful. I don’t want to go too deep into this at this time but the oncologist is concerned about work related stress. I want to see what the MRI scan returns before I allow them to start looking at physiological issues. I hold 4 separate higher diplomas in physiology & I am under no illusion that work related stress can create issues. This is a long road to finding answers but it’s also one that requires time invested wisely. I am returning to work on Tuesday so I will start accessing the physical effects.
Last point to note. Due to the eye issues my balance is off. So I have to recommence using my walking stick. I do use it when I walk the dog or go to the shops but now I have to use it all the time
Anyway Saturday morning and I am watching Ireland getting beaten by Japan. At full time the nurse comes in and tells me that the chance of getting the MRI today are low, but the oncologist will be in by 1pm. At 11;45 the oncologist enters the room. She is happy enough to allow me to go home at 5pm today but I must be ready to get back in once called for the MRI. She tells me not to be concerned BUT the answers could be in this scan. So off home to rest
I will update when I have the MRI