Answers and Questions

Yesterday was an unexpected day for me, eventful by all accounts, and in some ways a relief but not so in others, as is so often the case I ended up with more questions than I had answers.

I had been waiting for an appointment with a consultant about my ongoing health problems as detailed in previous posts.  To my surprise I got a phone call from the hospital yesterday morning saying my consultant who I haven't seen yet, had requested a CT scan and they were to arrange a booking.  Trying to work out a date I ended up asking if there were any sooner than those offered as they weren't convenient and I was offered a cancellation for the same day which I accepted.  Without time to think and worry about what was happening, the practicalities overtook the focus of my mind.  I went about preparing for the scans and traveled to the hospital.  I booked in when I arrived and sat down with my Mum who went with me.

Sitting waiting to be seen was, for the first time, a moment of anxiety.  I started to overthink things and the one question that repeated in my head was, why had the consultant sent me straight for a scan without seeing me, what had he read in my notes that made him send me for one straight away, what did he suspect?  I still haven't got an answer to this question and what's more is something else that happened later added to this worry.

After waiting for about 15 minutes I was called in and met the assistant radiographer.  They explained the process and read my notes that a chest scan was needed.  As I lay down on the scanner the lead radiographer came in and asked us to stop.  The consultant had changed the particulars of my scan, I was to have multiple scans rather than just one, and a contrast was required.  So I had to return to the waiting area where I was given about a litre of water with the contrast solution in it, which I had to drink over the space of an hour so that my colon would show up on the scan.

As I sat with Mum for an hour drinking the contrast my mind started racing.  Why did the consultant want to see my colon?  Why was I having a full body scan not just the lungs?  My mind is still mulling over these things but a lot of angst stems from the fact that CT scans in general are heavily associated with Cancer.  On the NHS website where you see the list of things CT scans are used to diagnose, the majority are Cancer related, the scanner itself is in the Cancer wing of the hospital, and everywhere on walls in the hospital are posters about coping with Cancer diagnoses.  No-one has said to me that it is even a possibility at this stage but seeing it everywhere is very disconcerting.

That contrast solution I was told is odorless and tasteless - it's not.  It tasted like chalk to me, it looked just like water but as I was drinking it, about 20 minutes in I felt my body react, it became harder to drink it, by the end I was forcing myself to drink it.  It felt like my body had realised "this isn't just water" - to the point I thought I might throw up but I was able to keep it down.  The contrast solution is used to allow the scan to see inside joints and to highlight organs better on the scan.

After an hour I was called in again and this time had a form to sign and I was asked a few questions about medication and conditions, did I have diabetes or asthma etc.  I was then told I'd be getting an injection at which point I think my heart stopped, I am so afraid of needles, injections are a nightmare for me and all the blood tests I have had in the past few months have been for the most part unpleasant, the nurses being the only thing helping me through it, they've all been delightful.  I lay down on the scanner bed and the radiographer looked for a vein to use.  My veins run very deep, getting one is hard.  She spent a few minutes looking for one to use which I appreciated because I've had blood tests that felt rushed that left me literally black and blue before.  She found one that was suitable and then inserted a cannula into my arm.  That was a thoroughly unpleasant experience for me, it's one thing having an injection when scared of needles, it's another to have a needle that STAYS in your arm.  I was more worried about that at this point than the actual scans.

The lead radiographer was explaining everything to the assistant as she went along, so I gather this test is rare.  The cannula was connected to an injection pump machine which they would control from the next room.  Nothing had been injected yet.  They positioned me with arms above my head through the polo shaped hole.  They left the room and the machine whirred into motion.  I had two scans of my abdomen and lower body.  The first was done without the injection.  I went through the ring twice and then came to rest.  That was an odd sensation as the machine itself has a voice that speaks to you telling you when to breathe and when to hold your breath.

The radiographer then spoke through an intercom and told me the injection would come now.  I lay there waiting a few seconds then I felt my entire body flush with heat, every inch of it felt like it was on fire.  This is a radioactive dye test, and as I gather, it is used to see inside the heart and to diagnose circulatory and coronary diseases.  I felt so hot, like I was sweating out of every pore.  The second scan started and I concentrated on it, breathing and holding when instructed.

After these two scans the radiographers returned to adjust my position for the next two scans.  I saw the injection tubing connected to the cannula and I saw the vacuum canister attached to the tube as it passed through the machine when they changed my position.  The canister was about the thickness of a can of coke, was made from glass I think, and had a large silver metal inside it and had what looked like a black liquid.  They left the room again and I lay flat with arms at my side and no head support this time.  Again I had the first scan normally, and then before the second scan I was advised the injection was coming, and again I felt it wash over me and the heat intensified again.  The second scan was completed and then the radiographers returned.

I sat up at this point and as I did the whole room moved and I thought I might pass out.  The radiographer told me to sit for a few moments, they got me some water to drink.  I sat for a few minutes then moved to a small isolated seating area where they asked me to stay for a while so I did.  I drank some more water and sat for a while until the lightheadedness passed.

For the rest of the day I had hot and cold flushes, and at one point I felt like literally everything below my diaphragm moved.  I had to steady myself, luckily we weren't far from home when that happened.  When I got home I had to rush to the toilet.  For the next few hours I had diarrhoea and peed a lot.  I was advised for the next 48 hours I would have to drink a lot of water, and was told if any rashes appeared to call a doctor immediately.

This is about 18 hours later for me now, the diarrhoea has stopped thankfully.  Nausea has come and gone and for a while I lost my appetite but that has returned.  I'm still peeing a lot more than normal but that's to be expected I guess.  The results will go to the consultant, and the consultant will send a report to the doctor that referred me, which was my GP, so I will find out within 3 to 4 weeks what the results are.  Questions still race and more keep occurring to me.  I have known other people get these scans and the only ones I know who have had the dye injected as well as the contrast are those that were diagnosed with Cancer which is fueling my paranoia.

I know I may be adding 2 and 2 and getting 5.  I know it will probably be something trivial, or something mild that they can treat.  Still the thought remains in my mind, what if it isn't?  People tell me not to think about it, but that's easier said than done, and it's not who I am.  I expect the worst in most scenarios, I want the best, but I expect the worst cause then if it happens you were prepared and if it doesn't then literally everything is a positive.  It also doesn't help that the NHS website clearly says they avoid using CT scans for screening as the benefits do not outweigh the risks - meaning they don't send you for one unless you have symptoms of something that needs one, which brings you back to that list of things they are used for.  As I said in previous posts my GP has suspected Sarcoidosis in my lungs, that brings me back to the consultant changing the particulars of my scan, what does he want to see in my colon, if the problem is in my lungs?

I'm relieved that things are progressing and it feels like something is being done but I'm left with even more questions than I had before.  I'm still having the odd hot flush but those are much more spaced out now, as in once every few hours rather than every few minutes as they had been yesterday.  I've also been able to remove the bandage that was covering the insertion point where the cannula was, that thing felt like it was stuck on with super glue.

I don't know what to expect next.  I want answers more than anything, and despite all the anxiety, the desire to know exactly what's wrong is overpowering it.  I know there is something wrong and I know it's not normal for me, this is week 18 now since the symptoms started, week 14 since first seeing a doctor about everything, and I waited 9 weeks to see a consultant, which I probably won't see at all now since he sent me straight for the CT scan and that goes back to my GP.

I feel like a voodoo doll, I've had needles in me, left and right, I've been tested for so many things, the list of possibilities is getting shorter.  The panicked reactions of what it could be, as a gay man the obvious one is HIV and other STI type things, they were all pursued months ago and everything came back negative, I don't have a thyroid, I don't have asthma, I don't have diabetes, it's not rheumatoid arthritis, at this point the only things left are conditions like Cancer where I always thought "that wouldn't happen to me" - I don't smoke, I very rarely drink [only Christmas time mainly], I've never done drugs, the only prescription I've ever been on before was Pen-V for tonsillitis.  Apart from my Nystagmus I've never had any medical conditions before.

One of the worrying things about this whole thing though has been the surprising amount of people in the family that have had Cancer which I did not know about.  My family tree is complicated to say the least so there's an excuse for some ignorance, but not only Cancer, I have discovered there's a whole slew of medical conditions people have which I had no idea about until I started asking questions.  Relatives I thought were perfectly healthy, and even some who are dead who I thought died of natural causes I have now learned had everything under the sun.

I find it surprising how little people actually talk about their health until you start opening up about your own.  I always thought that was just something that happened with mental health but it turns out the same is true for physical health too, why is it we are so ashamed to talk about it?  I wrote this post as I established a precedent months ago that I wanted to share what was happening, both for anyone that is interested and for myself to look back on in years to come and see what I went through and what I thought and felt at the time.  I hope it helps someone, I hope it sheds some light or answers some questions for anyone out there - even if only to know things aren't straight forward and that it takes time to find answers, if you find them at all.