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 :)

What this blog spot is all about

Hello. My name is Z - a two times head and neck cancer survivor and at present in remission. Initially I contracted cancer of the floor of mouth and tongue and four years later, I contracted cancer of the throat.

This blog spot has been conceived to share experiences with fellow survivors, newly diagnosed patients, medical experts, loved ones, employers and carers with the sincere hope that they will gain some useful insights into what it is like living daily with head and neck cancers (H&NC). I believe that if you know what to expect before the time, it is easier to confront and overcome difficulties. And it makes it easier to maintain courage and positivity. Because without those two qualities I do not think it is easy to overcome adversity in any shape or form. And most of all, this blog is to share experiences and any innovation, insights or research that might make our lives a bit easier.

Perhaps a conventional cure will not be found for cancer. But as time passes by and we learn more, as we find new ways to pull the monster's teeth, we will beat cancer through our human endeavour and perseverance, and one day ensure survival for all patients.

To the best of my knowledge, no books have been written describing in layman's terms surgical intervention, chemo- and radio therapy of H&NC. Nor are there any books that describe life after that first round of interventions which take us away from life as we had known it into the realms of the unknown. Which is a sad state of affairs indeed. If we don't talk about it, how will the newly diagnosed patients find courage to face this terrifying diagnosis? How will others discover how to relate to us and our post-treatment difficulties? If those who have survived do not tell their stories, who else are qualified to do so?

I need to say at the outset that the experiences related here are my own, and that I do not profess that they are the same as those of other cancer patients or survivors. I am not medically qualified to give treatment advice. Any advice on this blog spot must be treated as anecdotal rather than medically significant and must be discussed with medical experts before you try it. This is more a narrative intended to guide a first time traveller through a scary landscape, and if possible to meet fellow travellers to make our journey less arduous.

If you look at the faces of oral cancer survivors, they are sometimes not visibly scarred or disfigured. Their scars are mostly on the inside, they have survived their cancers but often suffer greatly from the side effects of the life saving interventions that remain with them for the rest of their lives - leaving them choking, drooling, and slurring their words. But if you passed them on the street, you would think they are like everybody else.

The funny thing is that they do not think they are like everybody else. They know about the defects that they carry in terms of hearing, eyesight, speech, eating, swallowing and so on. And because these problems are so present in their every waking moment, they somehow imagine that others can sense it from a distance, or read it in their faces. Some H&NC survivors are badly disfigured and too shy or embarrassed to appear in public. But the rest of them have to find their way back to work, get on with family life and somehow adjust and make do in a world where most other people are normal and do not suffer defects.

So this is the first challenge - H&NC / oral cancer patients and survivors need understanding, sometimes special treatment in the way that some other handicapped folks need wheel chairs or hearing aids. But because their handicap is not in your face, not visible other folks don't know about it, and if they don't know about it, they can't make allowances or help in any way. H&NC - the invisible, deadly and cruel disease that often takes away what the patient needs most to be able to function normally in society - acceptance, compassion and communication. Patients sometimes feel that they no longer fit in to their previous groups - I certainly feel that way.

My speech is impacted and I now am an onlooker rather than a participant in conversations. I find it difficult to share my experiences or ideas with my slurred speech and occasional drooling. And I tire easily from the effort of speaking. Whereas before I was more vociferous, I now appear quiet and withdrawn - not really a fun person any more. As I sit and listen to others talk, I often ruminate about what I would like to say, and sometimes I even gather the courage to chip in a word or two. But frequently I am ignored because no matter how hard I try to articulate, my voice is soft and others - particularly in the heat of an animated conversation - don't hear me. Sometimes they do hear me speak, but the words I form make no sense to them. Then they ask me to repeat myself. And I do. Louder. But loud indistinct and soft indistinct don't make it any easier to understand. Sometimes, after the second or third repetition, someone else feels sorry for me and tries to guess what I wanted to say. They usually guess wrong, but I forgive them because there must be a kind heart behind the action. I put a lot of physical effort into shaping my words. After a few repetitions of the same phrase I am beat and ready to quit. That is why I am no longer much of a participant in conversations. Truth is, it really doesn't bug me any more.  Mostly when you don't speak, you don't get tired, or irritated by having to frequently repeat yourself.  And listening is a novel and illuminating experience for some of us...

Not being able to interact verbally in a meaningful way makes it difficult for strangers to get to know me, and I fall back on relationships with folks I have known for many years. They have some context for who I am or was, whereas strangers don't know that hold several degrees - or that I have a wicked sense of humour and used to be a 'party girl'. They can only react to what I present - and it is not always easy for them to move past the slurred speech to find the real person hiding in there.

I experience isolation most in my relationship with my husband. We both get impatient when he can't understand what I am saying. He often accuses me of not communicating properly. This makes me angry. Trying to argue back when you don't speak well can be a frustrating experience. In the end you either want to scream like an banshee or you go quiet, allow the anger and feelings of impotence and futility to consume you from the inside.

Our relationship has moved into a new place. But it is not a nice place.

I do have a few good friends who contribute to my life in a very positive way. I think they also struggle to understand me at times, but they have realised that repetition is difficult for me. They may only get half the story when I talk, but they make an effort to keep up. They understand when I am tired and would rather listen to them talk. I am so touched by their compassion every time I see them that I want to move mountains in gratitude for their kindness.

I compensate by writing. E-mails, sms's, blogging. I have taken up photography. There are many ways to say what you want to say. This is what my blog is all about - how to adjust, rehabilitate, find new ways of doing what you used to do in another way. And maybe some of you reading this blog will have advice they want to share.

But I am running ahead of myself. In the next post, I'll tell you about how it all started.