25 September 2016
I have to apologise that I have not done an update for some weeks. I have been either very busy (work & politics) or I have had down time, and I have been quite unwell at times (I now have morphone, so that has helped A LOT).
Before you read what I say below, please know that I am very positive, frustrated, but positive. I know what has been said means that there is no chance I will die, which is always good, and that no matter what happens this tumour can easily be treated.
So, I was last seen at the Manchester Royal Infirmary, and was then transferred to the Christie's Hospital, which is a world centre of excellence for cancer treatment. I was given the full MOT. I had lots of blood work done, a PET scan (see here if you do not know what that is) and a CAT Scan (with contrast).
I am very claustrophobic. I tried keeping my eyes closed when I went into the PET scanner. unfortunately my eyes betrayed me and sprang open. I was in the middle of the scanner. I freaked out I am sad to say. I screamed for them to get me out. Did it again, but with an eye mask on. Worked a treat.
The hospital kept me on the steroids. The steroids plus glaucoma treatment had worked and my eye swelling had all but disappeared. But it is never a good idea to stay on steroids.
Whilst all of this was going on my biopsy material from the tumour was getting a second opinion. Apparently (and this is important) lymphoma diagnosis is very difficult. As such, there is always a second opinion, and the second opinion over-turns the first if the two do not match.
I had an appointment to get the results on Monday 19 September 2016. I was told that the second opinion came back as "inconclusive". That was a bit of a shocker, and not something I was expecting. The Dr said I would have to go back and a have new biopsy. Because it did not come back a second time as conclusively lymphoma they cannot start radiation treatment.
I was pretty angry about this. Seven weeks of test after test and getting ready for radiation. I just want to get this f*cking thing out of my head. I want the headaches to stop. I want the pain behind my eye to stop. But no, I now have to have a new biopsy.
It may sound petulant, but I am considering refusing a new biopsy. If the test is not conclusively lymphoma then they can jolly well just cut the bastard thing out of my head. They can then biopsy it as many times as they want. The stress of the last seven weeks has been enormous. I have been trying to juggle a new job with hospital appointments. My bosses have been amazing (as has my old managing partner and colleagues) but I cannot expect that to go on forever. What if it takes another seven weeks and we are no further along and we get another inconclusive catergorisation?
What has frightened me more is that they wanted me to stop the steroids to let the tumour grow back. The week before (at my first meeting with them) the consultant had said that if we let it grow back it could flip to become an aggressive tumour. Now they wanted me to stop taking the steroids that keeps the thing under control?
We are a week down the line and the eye has started swelling. Not a huge amount, but it is there. First thing in the morning and last thing at night my vision goes double, as it did when all of this first started. I can feel it growing (well, that's probably my imagination - but I can feel the thing at times). I do not want to lose my vision - so I am hoping that when I see the eye hospital surgeon next week we can do something. But, I am thinking that I could bypass a lot of treatment by just simply refusing the biopsy and only agreeing to a surgical removal. Not sure it is possible given how it has melted away the bone structures and has invaded the sinus in the way that it has.
I have also not seen the new CAT scan. As expected, he confirmed that the steroids had reduced it a lot, but it is still there (obviously, the headaches are killing me, as are the sweats).
So, expect an update next week. I am glad that it has not spread further and that it will be easily treated - I just want to get to the start of that treatment.
I did lose my shit over it though. How can it be inconclusive when the first test of it had not been. The Dr said that real medicine is not like how it is portrayed in the media and on TV. Tests are not always conclusive, and tests on cancer cells does not always give a direct diagnosis. I am sure he's right, but it has pissed me off a lot. I am pretty angry that we appear to be no further along than we were on 9 August when we first had sight of it.
So, tune in next week.
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