Unfortunately after the world moving beneath me at the previous hospital, meaning I didn't have to wait for anything, I was to have no VIP perks here! I got my date through for the 15th Jan which sounded so far off. Especially as my symptoms were now coming thick and fast and my heart was really objecting to being squashed!
The problem with a PET scan is that there isn't many scanners around and accordingly to my VKR ( very knowledgeable radiographer ) they get 6000 people a year needed one at this centre. Without this scan we would not have a baseline and being able to see when I'm in remission would be very difficult.
Luckily I got a cancelation on the 11th and was able to be seen a few days early meaning I could crack on with treatment. I had gone from stalling wanting treatment, just to feel normal for a few more days to desperately wanting to start at one end of the process so I could start counting days until at the other end.
Knowing i needed cannulating prior to the scan we rang our lymphoma nurse and asked if it was at all possible to come cannulated ( ricks a nurse! ), if he was to do it I don't worry as he never misses! The answer phone message we got back was that although this was not possible a very kind and thoughtful research nurse had arranged for a complimentary therapist to give me a massage during the cannulation?! What!!!! How embarrassing and how to make an issue out of it for the poor person having to cannulate me!
Luckily for me I turned up a little early and was ushered straight through and decided to omit the information about my forthcoming massage! My front sheet did say "NEEDLE PHOBIC BRINGING ASSISTANCE" I denied all knowledge of this saying I may just have been a little misunderstood!!
The radiographer looked so confident with the cannula and was but we still managed a miss, was a gentle miss though. Then a lovely passing lady said "lets just use a butterfly in your hand" yippee!!! I love those things!! So with I little butterfly in I was injected with my radioactive sugar tracer and then left to sit in a dark quiet room for 50 mins.
Apparently talking to a relative or reading in this time alters the images but listening to music was ok? I'd typically brought duff ear phones so ended up watching the clock instead hoping that was within the 'rules'.
I was then led through to the scanner and strapped on. It looked very much like a CT with a deeper donut. I initially felt comfortable and relaxed into my 45 min scan. The problem was that when someone tells you you can't move you start getting really uncomfortable! Lying flat on a hard plate thing did nothing for my back and lying flat with my chest tumour altered all the blood flow in my neck so that felt like I was being choked! To then be fed through a donut machine in silence for 45 minutes was a little testing! I can't imagine how people manage if have issues with space? I would have appreciated some human contact in the time, even just someone telling me I was half way through over a speaker would have helped as I had no concept of time at this point!
PET ( positron emitting tomography ) uses the sugar they have injected me with to see where the cancer cells are. Because the cancer cells are so high energy the sugar tracer sticks to them and they glow red on the image ( or look black on a still image ) it's all very clever!
Afterwards I was given some lucozade and a cheese butty as I had had to come starved for the scan so the cancer was 'hungry' for the sugar. I was advices not to go within 2meters of young children for the day, difficult when I had one at home!!
One of the doctors rang me later that day to say they had seen the PET scan and I have more disease than initially they had seen on CT ( this is to be expected as its so aggressive will have grown lots in the wait for a scan and also PET scans more detailed ). Unlike solid tumours haematology cancer grading isn't as scary sounding. A grade 4 solid tumour eg lung would mean you have a metastasis somewhere and the disease would be very advanced. In blood cancer grade 4 means that its traveled round in your blood and more areas are affected but these aren't true metastasis. It made no difference to my treatment plan or drug choice. So there were the results and I got to see my impressive pictures. I could now physically see my grade 4 primary mediastinal diffuse large B cell non Hodgkin's lymphoma and very impressive it was too!
Pics 1 a scanner ( not mine don't worry I didn't go in taking pictures! )
Pic 2/3 my scan results. My brain and bladder should be black the other bits are all lymphoma
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