Early morning reflections

I am simply amazed at how you can be in a blue funk one minute and then suddenly snap out of it seemingly without any reason. In my case I have been in a state of despair ever since the secondary diagnosis that the cancer that I was originally diagnosed with has either returned or was simply not eradicated in a given spot.

Regardless of which of these alternatives are considered as real there is no escaping the reality that for most people with this form of cancer the odds are not good to start with and certainly do not improve with any history of recurrence or a new event.

I have it seems spent something like six months being in pain and moaning about it.

I sat down the other day to try and think through WHY this has been my response to events.

In the first place I have always taken for granted my ability to control my voice and so be in a position to express myself by oral means. The recurrence of this illness has taken away this ability in one easy cut. As the new growth was wrapped around some of the nerves that control the vocal chords, at one and the same time became a life saver and a death knell.

On the one hand the fact that I was becoming hoarse meant that there was actually something that doctors could see as a symptom that needed investigation and it was with a CT scan eventually that the recurrence of the cancer was discovered and so action could finally be considered that would actually deal with the outbreak of this thing again.

Without it, I suspect that the doctors could still be treating the overuse syndrome diagnosis that they had arrived at and the cancer would be continuing to grow.

So having discovered the cancer what was the side effect? It was to force me to lose the use of one vocal chord and so leave behind - possibly for ever - my ability to communicate orally - something that I have relied on for all of my life and something that features as something that has defined me as a person for these 50+ years.

Now only being able to whisper or croak rather than to exercise the full range of my voice is something that creates difficulties every day. I wonder whether it is possible to regain the ability I have had in the past and I wonder if it is worthwhile - given the recurrence of the cancer and the potential time bomb for survival that this represents.

On the one hand there are stories about Nana Mouskouri the famous singer which state (inter alia) " In fact Mouskouri only had one 'working' vocal chord (rather than the normal two). This unusual condition accounts for both her hoarse spoken voice as well as the ringing quality of her sung registers."

From this I suppose that I can take heart and understand that with time I too may be able to regain some of the ability I once took for granted about being able to speak, articulate clearly and actually make myself heard with changes of pitch and volume virtually under any conditions. The question is of course whether I have the desire to do this and of course whether I have the time left in which to do something about this new condition.

As the time approaches for the start of new chemo and radio therapy I guess I simply have to make some decisions about whether I want to continue to live and if so in what condition. Then I guess I will have to make some decisions about whether the effort required is worth it and whether the pain that will no doubt be involved is also worth it.

To be perfectly honest the matter is a toss up at present, but with each day that passes the tendency is to at least try and not go out with a whimper.

Other than the voice there is the reality that my right hand side is simply not going to be the same ever again after the latest operation to remove cancerous growths. My hands for example are or at least feel as if they are at two very different temperatures. The left feels normal, while the right feels odd. Most of the time the right hand feels as though it is freezing cold and when touched actually seems to have a temperature difference.

So what can we learn about all this - one explanation I have found useful is located at this URL

Whether this is something that applies to me or not I know that at this point, I can control the use of my hands and with some effort I can actually DO something about the feelings of cold even if the results are temporary and transitory. So the message really is, get over it and adjust!

Then there is an unrelated problem that actually occurred earlier - the development of cataracts in my eyes.

While normally a treatable element in life one generally waits until the cataracts are developed before taking the risk of having them removed. In my case the situation appears to be compounded by two things one being that my left eye is more affected than my right and that the left eye also contains some blood vessels that seem to have burst at some point thus creating the effect of stretching a crinkled film of plastic over the lens of that eye so that vision is actually distorted. This does of course produce some weird effects and unpleasantness. Still there have been millions of people who have managed full and productive lives with only one eye so the fact that I have two both of which still operate to some extent is a really positive plus.

I also seem these days to suffer from a form of migrane headache that does not cause pain but does cause loss of vision in one or another eye for some time. I am told this is stress related - gee what a surprise!

In combination though the four elements combine to reduce my perceptions about my levels of functionality and so create a psychological state that heads towards despair if allowed.

I have been on the edge of this for the last few weeks and I suspect that as I head towards more of the treatment that caused me so much anguish last time I am likely to become depressed and have all sorts of thoughts about the meaning of life and the future.

I hope that I will be able to resist the pressures of all of this an have some sort of attitude that is able to put all this in perspective.

On the one hand I know that I am alive at present and frankly, better off than millions of others around the world, in spite of the current situation. At least I have access to medical treatment and with any luck it might actually work provided I can get through the side effects and the period of time it takes making me sick and vulnerable.

Assuming that I can get through the next relatively short period, the question remains what will I do from then on?

I have no real idea of the answer at present, but I know that I will have to find ways to cope with the 'new reality' that becomes my lot in life and in the process, maybe, just maybe, by writing down some of these thoughts and some of the experiences as I go through them - someone else will be able to benefit or at least not have the fantasy that they are in a position of being someone who is alone and experiencing something new but be assured that others have been down this path before them (probably millions of others over the years) and that by adding their experiences to the common data base of human knowledge, maybe, just maybe, someone else can at least benefit from knowing that they are not alone.

Progress Notes

Today is June 22nd.

The countdown continues until the dreaded day next week on which I once again have to enter the precinct of the hospital to gain access to more chemo therapy and at the same time more radio therapy.

I have always wondered about the notion of radio therapy. Unlike the reality of being bombarded by gamma radiation that kills everything it touches I would actually prefer it to mean having to lie in a soundproof room listening to something inane on a radio station. I can imagine nothing as therapeutic as having to listen to certain shock jocks for at least an hour a day to loosen up one's ideas about sanity in the world. Nor can I imagine anything more therapeutic than having to listen to certain types of music as a way of gaining tolerance for sounds that previously would have drive me totally insane.

Instead I have to face the dreaded reality of a carefully fashioned plastic mask that is placed over one's head with breathing impeded and tension hunching the shoulders as marks are carefully drawn on the mask and the lead shields of the gamma ray emitter are brought to bear so that for the required number of minutes one is toasted by deadly gamma radiation all intended to be a way of saving one's life.

I guess it beats holding a bottle of radium to the affected area - but I have to say that doing this willingly is a leap in faith for the patient and a giant step for the profession of medicine.

I am grateful that I am at least allowed to have the therapy as this indicates that the doctors have not yet consigned my chances to the refuse bin. But I have to tell you all that it is hard to volunteer to undergo more and more trauma in the hope that the outcome will be more successful than the last time that we went through this ordeal.

Sorry to be maudlin folks - just too much time to think I guess.

Another day

Today is June 10th

Quite a few days have passed since I last wrote. My return from hospital has led to further improvement of my condition and as time has passed more information about what happened.has come to light.

I have found that the cancer has in fact returned - or never really went away and that in spite of the cutting of the tumour out of my system I am afraid that some was left outside the space in which the cuts were made. I am assured that what remains is microscopic and that if radio and/or chemo therapy can be used, then this is likely to mop up what was left. I am also assured that while the nerves were invaded the cutting of the nerves has revealed that it did not spread (or at least get a hold) beyond the sections which were cut out. Since it also did not invade the vascular system there is hope there and of course the cauterisation of the operation site did make it hard for cells to survive.

Had a day of finally being able to walk around the lake again - exhausting, but indicative that at least I am getting some level of fitness again. I have also been able to get a regimen of the heart medication that keeps my heart beat regular without zonking me out.

My stitches have been cut and what remains will dissolve in time and so all I have left to handle at present is the thought that once again I will have to face at least radio therapy for another five or six weeks with all the associated issues that arose last time.

Still I suppose it's better than being dead.

The Vagus or Wandering Nerve

A more adequate description of this set of nerves and what they do can be found for example at:
http://www.meddean.luc.edu/lumen/meded/GrossAnatomy/h_n/cn/cn1/cn10.htm

Be careful when you read it or you can simply horrify yourself at how many things are controlled and/or impacted by this thing.

Indeed the more I read the sorrier I become. Most important I guess are the following:

• senses aortic blood pressure
• slows heart rate
• stimulates digestive organs
• taste

Current news about my ongoing saga

I am back. A lesser person than when I went into the hospital, (ie even more of me has been left in a waste bucket!).

After a five hour operation (three hours more than originally mooted) I was up and out into the recovery area from which it was a short push to the High Dependency Unit. Stayed there from Monday afternoon to Thursday morning when I was allowed to go home.

Apparently they took out a fibrous tumour the size of a golf ball from just under the right collar bone and there is now a cut covered with a waterproof bandage just where the top of a shirt collar would go. According to the pundits this will blend nicely with the age creases in my neck when it heals and become scar tissue. I remain sceptical - but considering the alternative who cares. The stitches will come out next Thursday and I hope to be able to get the results of the pathology this will then determine what if any treatment in the future is needed and can be undertaken.

The tumour was apparently wrapped around the nodes, the vagus nerve, blood vessels (which is why the operation took three hours longer - they got in a vascular surgeon to assist).

Meanwhile I still have appointments with the radiologist and of course we have to get additional blood tests for this. Then they have discovered that I had a very fast heart beat while I was in hospital that my cholesterol was elevated and so a cardiologist was called and he has put me on some beta blockers and then will give me a stress test in about 4 weeks time. I did ask about that one - after all I thought that having stress was bad for the heart and they all laughed and said what it was was my riding a bicycle to see whether I could manage or not - so I guess now I will have to practise around our little lake as well as go for the 5 km walks. These bloody doctors they put you through your paces and CHARGE you for the privilege of making you work out! I am having some trouble sleeping as I seem to have considerable congestion however this is being taken care of by with some anticongestion medication and there is of course some pain, not from the surgery yet - strangely enough but mostly from cramped muscles in the neck. I am told that I will have pain from the surgery as things heal and scar tissue forms - terrific - just what I am looking forward to.

Meanwhile a have discovered the joy of children's paracetamol - ie the raspberry flavoured concoction that is liquid. MUCH happier to take this than try and swallow that bloody great big pill and the relief is the same for six hours.

I was up an about yesterday out shopping yesterday and I was able to manage walking about the supermarket and even going shopping for things on my own - what bliss, no nurses to pamper me at every step!

Not bad for someone out in four days after major surgery.

The drugs have been making me a little muzzy headed and I really HATE this so have asked the doctor (local GP) to DO something that I would encourage all doctors to do and hold a 'case conference' in which I feature as a person rather than various body parts which are focused on and treated seemingly independently. In this way I hope our good medical friends will be able to get their collective and expensive acts together and look at the various bits of medication and processes and treatments and start to reach some agreement about what is needed (overall) and how things can be balanced and adjusted so that no one treatment buggers up something else and so that each treatment is complementary instead of being a stand alone thinggy.

Yeah I know - it means I am BACK and wanting to exert control again - well - that's the penalty for letting me wake up after the anaesthetic! Since I have to pay the bills I really want to have a say in what happens to me and I do NOT want to be treated like an ignoramus - after all I too have university degrees so I CAN understand what is going on if they would only bother to explain!

OK, that's enough for today I will go and try and have some breakfast it being 06:37 here on a Saturday morning and then slowly chew and swallow gingerly until it all goes down.