Post Radiation Complications: A roller-coaster ride for the rest of your life

I am obliged not to leave you with an unplanned cliff hanger. And even though I am far behind with my studies, I thought that it might be good to take a quick break and share the good news with you: I have dodged another bullet from the big C!

The CT scan revealed cystitis, not a sick parotid gland, but because of the poor blood circulation in the previously radiated area, the entire cheek is compromised. It is highly susceptible to staph and strep and any other organisms. My cheek is not inflamed, my white blood count was 6.2 - but the cells are sick because there was some sort of bug that got in via the compromised mucosa (thanks to the lasting effects of radio therapy!) and this area is not healing as it should because there is inadequate blood supply,  there is insufficient lymph drainage and  the tissue has been compromised and is not functioning normally. The jaw bone is in the same boat – but now I am running ahead of myself.  I will tell you more about what happens to radiated mandibles when I finally get to catching up.

So to the lesson:  post radiation survival is a day by day roller coaster ride until the day you die. Once you are clear of cancer, that is when the real journey of survival starts, and I think it is sometimes more unpleasant than dealing with cancer itself. Probably because it will never end, will never be over, like the cancer can be over.  The risk of cancer reduces in line with one’s time into remission, but the probability of post-radiation complications increases over time, with normal age-related declines compounding the impact on compromised organs and tissue. There are also psychological declines.  Realistic expectations have to be set and managed that complications will occur: often, and with very unpleasant symptoms.  Teeth may give trouble, fall out, jaw bones may disintegrate, tissue may stagnate and die, new cavities may form where compromised bone and tissue die off - and all of this is very likely. Even if you take extremely good care of yourself, bad things will probably happen because an aspect of the body has been weakened. You are vulnerable and cannot expect to live an uncomplicated and healthy life like you did before radiation therapy.  This is tough to hear, even more tough to experience and very difficult to be positive about. Having said that, the altenative, to give up to pessimism - is simply not a viable option. 
I once heard someone say that cancer doesn’t kill you, it just wears you down and then one day, you are too tired to carry on and you just let go. Well I don’t agree with that, because cancer is an enemy that I managed to visualize and actively fight.  But post cancer survival after radio therapy is another kettle of fish entirely, and I can see now that I have a lot of mental adjustment to work through if I want to live a happy and functional life.

At a practical level, the primary implication is never to be without a ten day course of broad spectrum oral antibiotics in your medicine cupboard, and if you can persuade your GP, access to daily IV antibiotics during a crisis – because IV works better for areas where blood circulation is compromised.  If the cystitis is oral and severe,  you can dissolve a capsule of doxycycline in a tablespoon of warm water, swoosh it around in your mouth and then swallow it after a minute or so. It does make yur teeth look ghastly though!  And take plenty of probiotics.  Double up on what you should take and then throw in a few extra for good measure.  Eat yogurt, lay off the booze, smoked and processed food and avoid all sugars like the plague. Chew or suck xilotol if you can.  And top it up with Niastatin drops orally every couple of hours. Maybe throw in a bit of B vitamins to help you cope and check that your iron levels are good. I don’t know how men cope with candida, or even if it affects their bits like it does for women.  What I do know is that vaginal thrush from antibiotics can keep you squirming around with itching, burning and scratching,  embarrass you and make you more irritable than a year’s worth of PMS in a day.  Do whatever it takes to avoid it, as this level of irritation when your emotional resources are taxed is a complication you really can do without. Take some supplements to restore your cellular health - and sleep as much as you can.

You know that I am not a medical doctor, right?  So you must not do anything I say before checking with your doctor. But sometimes, it is good to give them a suggestion of what helped someone else.

As to the symptoms, I am now on day 21 since it all started. The pain has receded a bit – I have cut back my pain meds to night time for sleep only. The edema is slowly subsiding, but stil tender and uncomfortable to eat with. My oncologist thinks that we might be looking at another ten days before real progress becomes visible. Can't wait to open my mouth again by more than the width of one finger!

Even if it is tough, I have much to live for, I am blessed every day with wonderful experiences, opportunities, displays of kindness and access to help.  Given that things are what they are, I am in an extremely good place. I am one of the lucky ones.

Must get back to my books and study. I will catch up with you again after my exams.   

If you have lived through something similar and have advice to share, don’t be a stranger :)

I hate blogs that start up all enthusiastic and then peter out and fade after a while. And I vowed mine would not be like that.  My intention was to publish a dozen or so blogs to bring you up to speed with the present time of my recovery and how I got here.  But I discovered it was hard work to revisit the past, painful to relive those experiences and difficult to find the discipline to return and document it all. Harder work than I had imagined.  And emotionally draining. Sometimes one overestimates one's own abilities. No, the clever people say we always do that. There, my bad! I am human, and like the rest of the world I overestimated my cleverness and my abilities. But this is my journey - warts and all - and you have chosen to travel part of it with me and to be part of these discoveries of mine.  It seems like now we have started on a new chapter before the previous ones have been completed. I'll have to catch up later.  While I was still reviewing the history, a new headline is about to break. Have no idea where we are going, but come along for the ride!

What you don't know is that this year I went back to universtity to study - postgrad psychology. I need a new career because with all the speech problems after tongue surgery, what I was good at - speaking well - is no longer available to me.  So off to university I went and as a mature student I have found it very hard work to keep up with 22 year olds.  But I have loved every minute so far, and I enjoy learning about things that interest me. I love gerontology and personality psychology and even research. I hope I make it through the mid year exams so I can carry on with the next semester and graduate - although this is looking a bit optimistic right now.

Why the gloom and doom?  Well, I have what I think is a tumour or lesion or something in my left cheek. It came up almost overnight about ten days ago, manifesting as a bit of tenderness and swelling on the left hand side of my jaw.  Probably parotid gland gone rogue. Maybe a tumour, maybe something else.  It is swollen, it hurts like hell and almost two weeks of antibiotics have not made it go away. I spend my days vomiting from the cocktail of antibiotics and pain killers.  And sleeping - the painkillers work really well when you sleep. It interferes with my studies and it makes me very unpleasant to be near. I do a perfect bear with a sore head impersonation. I am taking Tramal for pain, Zofran for vomiting and several grams of Flagel and Augmentin orally, plus a bit of an IV booster. It has stopped whatever it is from getting bigger. But so far no reduction in size.

Had a CT scan yesterday, will see the oncologist on Monday to hear what the scan revealed. My favourite doctor is away on holiday is Spain. Bummer.  He at least knows to hold my hand while giving me bad news or painful procedures. But he will be back at the end of the week. Then I will ask him to make all this go away. Or at least to help me make sense of what is happening.

I have persuaded my GP to give me all the meds I need in the interim - without her having to make a diagnosis.  She is a lovely Greek woman - AC.  I love the way she swears.  Yesterday she told me:"I have given you enough f...ing antibiotics to floor a f...ing rhino and it still hasn't helped. I am tired of standing in for your bloody ENT specialist, this is a f...ing disaster. Go get some f...ing professional help!"  Then she gave me a hug and a script for more opiods. 

You kind of know after a while what the options are.  You can't really have surgery because of previous radio therapy which messed up the blood supply and which will cause trouble with wound healing.  You can't really have radiation again because the area has been maximally radiated previously and any more radiotherapy would only result in necrosis. Of couse these options remain as a very last resort, just before accepting death - but in the mean while, you go conservative with chemicals. Bit in a big way. High dosages, broad spectrum. And you hope for the best.  And if you take enough pain meds you can imagine all sorts of religious experiences and archetypal revelations.

And try to carry on with life. Study for the exams, trying not to fall asleep on every page.  And tell yourself that you are so close to realising your dream that this is just a small hickup and that the brass ring is in reach.

I think it will be ok.  I will let you know when I know more.  Mean while, wish me well.  I have been clear after my last radiation therapy 66 months ago.  I want to believe this is just a little blockage of my  parotid gland, and that the antibiotics will clear it up.

Somebody said the it will be as we say it is. I will be fine.