Monday, April 6, 2015

A New Clinic to visit

When I looked and saw the last post way back in November, I was rather shocked.  I knew I'd been slack, but didn't realise how badly, so I apologise.

Despite we're into a new year, I'd have to say it is pretty much just a continuation of 2014, with the elephant in the room still being my ongoing throat issues.

Last time I said it would probably require a visit to the Doctors, and it did with the outcome being more fluconazole tablets and a referral to the infectious diseases clinic.  Two things - at least it allayed my fears re the return of the cancer, and what gives with infectious diseases?

Anyhow, as I waited for the infectious diseases (ID) appointment, it was the normal cycle of alternating weeks for the tablets coupled with the Nilstatin.

February 4th had me at the Infectious Diseases clinic not knowing what to expect.  Doctor was nice and again put any residual fears re cancer to rest (Moira said she could see the relief on my face instantly).  He agreed it was a little unusual to be having these issues so late in the piece, but the body is a complex instrument after all, so you never know when something like this was going to appear.  That said, he was a little surprised the fluconazole hadn't knocked the bugger off, so a new regime was put in place.  Forget the nilstatin as there was no evidence of thrush actually in my mouth and it wasn't offering any substantive relief anyway.  Stop taking the 50mg fluconazole and take a course of 200mg instead to really try and deal to the problem.  And for good measure, let's take some bloods to check all sorts of things to see if something was out of whack with my system.  He also floated the possibility the thrush had actually got into my oesophagus and that the previous dosages, etc weren't actually getting to it to get rid of it once and for all.  I've got a follow-up appointment in May to see how things have progressed.

By the end of the larger dose pills, I was feeling pretty good, but it wasn't too long before the now usual and expected flare-up occurred.  By now I've developed a small tool-kit of trick to help me through.  Water on its own no longer cuts it - milkshakes and soft drinks seem to provide a degree of coating that soothes things a bit, and ice-cream provides a wonderful relief, as does jelly lollies such as jetplanes.  The secret is to keep drinking regularly - if you wait too long it is bloody uncomfortable for the first couple of swallows.  I was also fortunate to have a couple of cycles of 50mg pills as emergency backup.

At the end of February we went to Melbourne for a week's holiday which started with going to the Eagles live (absolutely awesome 3 hr show of just them on stage), then the rest of the week was the holiday/tourist thing. The weather was outstanding with temps hitting early 30s on occasion and that just meant I had to use my last dose of the 50mg tabs to keep things at bay.  Another interesting discovery - Schweppes Sparkling Raspberry soothe the throat a real treat and I now keep some on the fridge at home as my go to drink.

March 4th was my ENT clinic appointment with Mr Morrissey and things there went well.  Weight is stable (pleasing as I was sure it would have gone up recently) and from the cancer perspective, I'm having one last appointment with him Sept-Oct and then he says he doesn't want to see me any more.  Yippee!

Throat wise, I gave him a copy of the ID clinic notes and he said there was nothing extra he would have done, except possibly putting a scope down my throat to actually see what is going on down there.  He has suggested that I tell ID in May that he is more than happy to take a look via scope if they don't want to, so we'll see what happens there.

So, really the saga continues and it is fair to say this is the one side effect of everything along the way that has proved to be the hardest to deal with.  Sure the saliva thing is a permanent issue, but by in large it is manageable and now doesn't interfere too much with daily life.  The oral thrush thing is however ever present and there is no doubt I suffer if I drop my guard at all.

Which leads to yet another change to the drug regime.  When we got back from Melbourne, I was faced with what the hell I do now I didn't have any more pills.  I rang the Health Centre and asked for a nurse to call me so I could talk through the problem - I didn't want to make an appointment to see Tatiana unnecessarily, and I wasn't sure if I should still be asking for a repeat prescription for fluconazole.  Well, bugger me, Tatiana rang herself and once we'd talked it through I'm now back on the pills, but instead of week on - week off I'm now taking them every 2nd day to maintain a steady dosage in my system.  

So far, that seems to be working reasonably well.  Sure, I still have awkward days, but they are way more easy to deal with than having to wait a week before I can take any pills.

I'm sorry this has been a marathon post, but it all needed to be said.  This blog still remains an important tool for me to record what has happened on my journey (despite my patchy post timing).  I've had reason to revisit posts a number of times and I'm always amazed at how things have progressed.  It is as a direct result of such a revisit that I already know what the subject of the next post will be.  Promise it won't be a 4 month wait.