Now I know many people keep their health issues quiet, but as has been noted elsewhere there's a few forum members or their family members experiencing health issues right now. I thought it'd be interesting to start a topic where people can recount their current problems, good news stories, or just plain strange medical experiences. A lot of us are getting into that time of life when things start to go wrong and maybe by sharing experiences and offering a word of encouragement we can make the load lighter. You can be as serious as you like or just tell us how weird something was that happened to you.
For me, the big thing in my world is that my wife Jan was diagnosed a couple of years ago with a desmoid tumour of the left hip. By the time it was identified it was too big for surgery (or at least, the surgery needed would involve losing a leg from the hip down). Luckily it's not a malignant sort of tumour, but these things tend to just grow and grow over time. They cause pain, reduced function, and can eventually impact on other structures nearby. There is no clear treatment beyond surgery. So she's had a tough time of it, especially given she had a breast cancer scare as well. Yesterday we saw the oncologist and there's a new treatment which is proving reasonably good in that it has worked more often than other treatments and so we've started on this. It's not even all that expensive, so with any sort of luck, she may just get it under control in a year or two. This is great news and she is much happier today than she has been for a while, which is really nice to see. So it's fingers crossed that this stuff works in our case.
The other medical experience is much more amusing than it is serious. At Christmas time I took very ill - in a lot of pain and vomiting. Diagnosis showed a large kidney stone in my ureter, which is the tube from the kidney to the bladder. I went into hospital and they pushed the stone back into the kidney and inserted a stent (a plastic tube that goes into the ureter to help drain the kidney). I was to return in 6 weeks to see if they could get the stone out. Turns out these stents are fine, except they can be uncomfortable, especially after exercise.
Now, no-one warned me just what that meant. Here's some advice for anyone in the same boat. Drink LOTS of water. Keeping the kidney and bladder well hydrated is essential for easing the discomfort caused by the stent. I didn't know this up front, so the first stent really hurt. I raced a HEAVEN event and by the end of the day I was crook. Peeing blood and feeling very unwell. But once I worked out the water thing, it was much better and riding was possible as long as I didn't push it too hard. As you know, I even managed to ride at CD6 and although not so good on the big track with all the bumps I still had plenty of fun.
I had the stone lasered in February, but they couldn't get it out, so another stent and back to hospital a couple of months later for another go. This time, they couldn't actually see anything, so another stent and wait to get a scan. As I had passed some fragments during this time, there was a thought that maybe it was all gone. The scan showed otherwise - I still had two large fragments.
So... what to do. I wasn't too keen on more hospital visits. If you've never had this done before you won't know what happens, but basically they stick a thin flexible tube up your old fella and use that to look around and so on. This is also how the laser gets in there and how they pull the stone out. If you can imagine how it feels after you've had someone doing that for an hour or so, you'll understand my reticence.
The first time was the best cos I just didn't know. My first pee after I came out of surgery was eye opening, and it didn't get any better. It's like passing molten lead. Blood, bits of flesh/blood clot, and a searing pain. All good stuff. I walked like a crippled crab for about three days, and the contortions in the loo were amazing! But of course that eases and by day 4 you are pretty fine again.
But I didn't want that again if it was of no use, so the doctor and I agreed to get the stent removed and see what happens - maybe the remaining bits would pass naturally. The bit I didn't like was the removing the stent thing. Previously this had been done under general anaesthetic, this time it was just in his rooms under a local.
So, when the day came, I was a bit apprehensive. What would it feel like to get the cytoscope up the old fella? How about when he pulled the stent out? Hmmm.... Anyways, bravely I walked in and used my gruff blokey voice to say I was all set to go. They sent me in to a room where I had to lie down with my feet in stirrups and this nurse walks up and says she is going to inject some anaesthetic jelly. Now I hadn't known quite how the local would work, now I knew. She basically grabbed my willy and inserted a syringe and squeezed in the jelly. WTF! Lucky they HADN'T told me about that part. Even more amusingly, after that she got out the second syringe - it needs two loads. Fork OFF!
OK, we got through that (I had no choice, did I?), so now I lie back with my willy full of jelly and wait. Eventually the doc appears and away we go. They put up a screen so I can't see but that doesn't really help - you just know what's going on down there. Helpfully he gave me a running commentary. "OK, here's the scope going in. Bit of pressure now to get it there. Hmmm... More pressure, gotta get through the prostate. Now, this will get uncomfortable, I have to inflate the baldder with fluid. This will feel funny, I have the stent and am removing it now"... and so on. Gee thanks for that.
To be honest, it didn't hurt at all, but it did feel weird, and it was uncomfortable. But it was over real quick, maybe 5 minutes.
The good bit is that later that evening, I peed out a large fragment, so now I have no stent, and only one stone to go. Life has become a whole lot nicer. I am feeling good, I can ride properly again, I might be rid of the stones entirely soon, and even betterer, we have a solid treatment plan for Jan.
So that's my experiences. The advice I'll offer is this:
Always drink lots of water. Your urine should always be clear. If it gets yellow and murky, you need to drink. Lots.
Kidney stones hurt a lot. Avoid them.
If you have stones and you can get painkillers, go for panadeine Forte and Indocid suppositories. This combo works a treat.
Stents are OK, but you need to keep everything hydrated. Drink lots of water.
Having things inserted where you don't want them to go is OK, worrying about it is much worse than the reality.
If you have a desmoid tumour, give me a yell. We know plenty about these very rare tumours.
