Dear Diary ~ Life without Dexter (six weeks on)

Dear Diary ~ Life without Dexter (six weeks on)

It’s been a little over six weeks since my throat was cut, leaving me with a seriously impressive scar that looks like I got bottled in a bar fight, and the parathyroid tumour removed. Dexter (as I named it) had been creating total havoc with my body and mind, and despite being technically benign, the effects were anything but. Given time, Dexter was going to shorten my life by a considerable chunk, probably by something like a stroke, or heart attack or possibly by breast cancer, all conditions that hyperparathyroidism can often lead to. I’m going to be very vigilant for a long time to come because I have no idea how long it takes for those health risks to be reduced now the tumour is gone.
Dexter was about the size of an olive, which doesn’t sound big until you realise than normally a parathyroid gland is slightly smaller than a grain of rice. The last months before the op, I could feel it by pressing through the skin and muscle of my throat and if I lay on my back, I would wake coughing.
The first couple of days, I felt a considerable change, which was ruined by the onset of a roaring urinary track infection that left me washed out and unwell for a lot longer than you’d imagine. I also had tingling in the hands, initially feared to be the results of a calcium crash. It took me a while to figure out the tingling was the feeling coming back into my hands. I’d not realised by increased clumsiness (and terrible handwriting) was the result of nerves being messed up by random excess calcium, so I had lost sensation and dexterity in my hands. Hand to eye co-ordination was also shot to bits. That’s coming back too.
Other things:
Bone pain: It had become so bad I’d been on slow release patches of strong medication. Every few minutes, a pain not unlike the one you get if you bash your elbow, would shoot through the core of bones, mainly arms and legs, but sometimes other places like hands, wrists and even skull. That has now stopped. It stopped within a day or so of the operation; hard to be sure as I was doped up.
Muscle weakness: again, like the sensation in my hands, something I’d not really taken on board. A year of regular gym going had resulted in NO extra muscle, muscle tone or any improvement at all, which had made me despondent and miserable. Now, I am starting to regain muscle mass, slowly, and slightly painfully. I can only thank my work, hard but unrewarded at the time, that meant I slowed the muscle degeneration enough that I’d not lost all strength.
Thirst: I had a permanently dry mouth and a need to drink, partly because my kidneys had been affected and had become hyperactive. Now, normal levels of thirst prevail. In the past, it was physically painful to be thirsty, becoming distressed if I needed water and was unable to access any.
Kidneys: less over-active but there’s a problem still going on. I see the consultant later this month; I suspect that my body is doing its best to get rid of any residue of calcium build up and I think it’s possible there may be a significant amount of gravel and sludge in my kidneys that is causing UTIs as it passes. I’m going to follow this up because it’s getting to be a problem. I had one heavy duty course of antibiotics and the subsequent UTIs have been less severe and dealt with using traditional methods. But they keep on coming.
Sleep: better but not good still.
Depression: different now. I am back with my base-line melancholy, and not with the paralysing, blank, dull misery Dexter gave me. I’m a lot less irritable and a good deal more mellow; my hair trigger temper seems to have gone.
Memory and cognition: massively improved. I’m rarely stuck for a word. I used to find I could start a sentence and by the time I was half way through speaking it, I’d be struggling to remember what I was going to say. The short term memory storage issue seems to be almost gone; I’m retaining things so much better. I think I’m also getting my French back; the long delay between brain and mouth seems to have shortened and I will be able to test that next month and see if I have improved fluency of understanding, speaking and vocabulary. Too soon to see if my German is coming back. I’m having to try and refresh my memory of where things are by (for example) scanning bookshelves to see and remember where books are. I used to have a near photographic memory.
Pain: muscle pain much reduced, but as my body recovers, I’m getting a lot of stiffness after exercise that is quite uncomfortable. Headaches are getting less frequent, too.
But this is where I need to also say that the pain in my left side/flank is getting worse. This has never been fully investigated, and was initially put down as possible kidney stones. Yet an ultrasound didn’t reveal any stones (though stones of smaller size may not show up, so gravel won’t have been spotted unless it had reached a certain size). The consultant also suggested broken ribs as a result of bone loss, yet my bone density proved to be fine. The pain is consistently getting worse, especially at night, and there’s a constant sense of pressure. I’m seeing the consultant in a fortnight or so and I am determined not to be fobbed off about this. It doesn’t seem to be diminishing and since it’s been there over a year, there’s something wrong.

Frustration

I saw a nice doctor this morning.

His opinion was it was too early to do anything much, which I logically concur with, and after he’d taken my blood pressure twice(once lying down and then standing up to compare them and see if there was a sudden drop) he seemed happy my recent blood loss had not had a serious effect on me.

The trouble with all this is simply that I don’t know what to do. I don’t feel either well or ill, just a bit wobbly and tired. I felt fine on Sunday, bit of cramps but nothing to worry about, so I went out for a nice walk in the forest, in search of the Dartmoor ponies they released there. Husband and dog were with me and it was fine. Couple of miles on even ground and then home for tea. But by half one in the morning, I was bleeding heavily again.

I just don’t know how to go on. Should I stay home, wilting, or forge onwards regardless? I can’t find any helpful information anywhere, nor can I find anyone I can actually ask for advice where I won’t feel stupid and a bit of a hypochondriac, because no one has told me WHY I am bleeding this much, or this erratically.

I haven’t seen a single female doctor either; they don’t have one at my GP surgery. I’m not saying men can’t imagine what it feels like; but that said, can you, guys? And after a good 34 years of menstruating, I am surely the best person to know if something is normal for me or not.

I’m starting to wonder if I would have been better off going to A+E on Saturday morning and making sure I got some proper answers. I’m not working this week, but that doesn’t mean I can sit around doing nothing all week. I want to know how long this is likely to go on for; I’m teaching next week, and the ladies among you may well understand how being in public with an erratic bleeding pattern is nerve wracking. Moreover, in July, I have a day trip to Boulogne as well as a probable 3 day trip to Paris.

I’d really like some decent medical advice and support. Just ’cause I seem calm and logical and sensible it doesn’t mean I actually know what’s happening to me; I don’t want a fuss, sure, but I’d like some understanding.

Sometimes being a bit of a Stoic just doesn’t cut the mustard, and today is one of those days. I’d like to scream and faint and go all girly, just this once, please….