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 :)
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