Cancer free? The all clear?

Now that the heavy treatment has ended the most frequent thing I hear is the question about whether I have had the “all clear” and if I am now “cancer free”. 

This is a really tough one to understand, let alone explain, but essentially and unfortunately, there is no such thing.  Once you hear those words – in my case “highly suspicious of cancer”, there is no turning back.   You can’t put the lid back on the box, life changes forever.  The tumour has been cut out, along with any surrounding tissue which might be affected, including lymph nodes by the dozen.  My whole system has been blasted with 8 cycles of super chemotherapy which has destroyed any fast growing cells (including cancer cells which might have been lurking after the surgery) and also laid waste to my immune system, red blood cells and still affects the nerve endings in my fingers and toes.  Massive doses of radiation in the area local to the original tumours have swept up any final vestiges of any cells attempting to break away and try and re-group into a sinister manner.  And now the Tamoxifen is blocking hormone production which can spark new naughty cell activity.  So all in all, a massive arsenal of heavy duty medical might has been used to destroy the cancer and any remnants there could be.

And that’s marvellous, trust me.  It is highly reassuring to know so many powerful agents have been used to obliterate any cancerous attempt on my body.  However, there are no guarantees with this beast, and recurrence or even spread and secondary tumours are entirely possible.  The best to hope for is that the regular checks find “No Evidence of Disease (NED)” The longer you hear the magical NED following diagnosis, the better the statistics are and the prognosis in the longer term.  Hence the regular monitoring and follow up, and the reason why it is every 3 months for the first 2 years. 

So, I am no longer a “cancer patient” in that I am no longer undergoing treatment.  I am still here, so I am sure I can now call myself a “cancer survivor”.  However, I cannot call myself cancer free as I have no idea if there is or will be any re-grouping of those dangerous cells.  After 5 years without recurrence the checks reduce to an annual basis because the statistics indicate that recurrence is less likely after 5 years.  Even then I cannot be cancer free. 

That is on the medical and physical side.  On the psychological side, I hear a reprise of “things will never be the same again” picking up. I can do many things now that I could not even a month ago and am getting stronger every day.  However, my mind is always alert to my vulnerability.  I am hanging on to the next appointments and checks with the Drs W and W2 in the hope that they will tell me that everything worked and I have no need to worry now.  But we all know that it won’t happen.  The best I can hope for is NED.  I know I should not try to read little clues into everything Dr W2 says as it does not reassure me, but I find myself unable to do otherwise.  His reluctance to remove the port or de-port me convinced me that he thought I was a certainty for recurrence.  Equally difficult is the fact that I can no longer take my professional path for granted.  Would I be too great a risk to employ after my current contract finishes?  I know I need to just put many of these things to the back of my mind, but that is way easier said than done.  The appearance of that small lump on my neck last week and the sinking feeling it brought indicate the precarious nature of my relationship with the cancer beast.

So cancer-free I am not, and never will be.  However, I will have those regular checks and very careful monitoring and I have to be confident that if the cancer beast makes any attempt to show its face again it will be spotted very promptly.  It will also be met with another arsenal of treatment and as unpleasant as that is, I know that I can cope with it.  As long as the sun keeps rising in the East, or rises anywhere really, I have to remember how much I have to be thankful for.

Onwards and upwards it is then…………

One day at a time? But how??

So many thoughts are crowding my mind about the future – it really feels as if a kind of crunch time is approaching and it is really. I am three quarters of my way through the long chemo path – HURRAY – and of course I am so glad to be nearing the end of these tough and horrible months. Even the prospect of weeks of radiation feels much more doable.  So why am I getting myself in a knot instead of preparing celebrations?

It’s that big question which is easy to forget when buried in the exclusive chemo club while the focus is just on getting through it. The all important question – Did the treatment work???? I am so scared that despite the heavy and thorough treatment, I will not be in the statistics which will see me cancer free. I don’t think I actually believe that will happen, but it is for sure my biggest fear, and I am sure I am far from alone in this. It is what we all dread. Right now, everything I am focusing on is based around recovery, and anything or everything else is too scary. Not just for the medical side (and that is a very scary prospect) but the implications on our whole life and future. There would be more treatment and the physical, emotional and mental toll of renewed rounds of treatment. Delay in recovery. Jeopardising return to work. The yearn for a life which is not based totally around treatment. Managing a long, difficult and chronic decline in health. All very, very frightening.

I am not trying to be negative and gloomy, but a cancer diagnosis brings with it possibilities which are not nice, and while not wanting to dwell on this side and on the probabilities of not recovering, I have to think of what we might have to do if I am in the small percentage for whom the treatment has not totally eradicated the disease or for whom there is recurrence or spread.

In fact I remember just after my surgery, talking with close family and saying how much I have done and lived through especially in the past few years in Asia. I was trying to say that even if the worst case scenario transpires, that I don’t have huge regrets. (Though of course I still want to see the kangaroo, iceberg and northern lights/Aurora Borealis). But do not mistake that for acceptance or expectation that the worst scenario will transpire. I fully intend and plan to get better – and remember my 2010 mantra is Recovery, Discovery and Laughter. But, let’s be honest, cancer is cancer and it is also going to put up a fight.

It does make me think back to my first appointment with my Dr in Yangon, back at the end of September and prior to diagnosis. I was asking all sorts of impossible “what if” questions. If it is cancer, what is the treatment likely to be, for example. My Dr explained that (from where we were at that point) there were many scenarios – including a benign diagnosis. For each there are international protocols guiding treatment paths. As hard as it would be, her advice to me was to try and take each step as it came. Then we would know what we were dealing with and be able to work with specifics. We needed facts – otherwise all is speculation.

And I think that is why my head is where it is at just now – because the next lot of facts sure have a lot riding on them. And isn’t the mind a funny and often independent thing? Here I am, 75% of the way through chemo, and there it goes, actively seeking new worries?

So I am making a real effort to take my Dr’s original advice and focus on the “NOW”, on this step and the next two chemos. Let’s see if I can boost those red cells through diet, build my strength through my beloved and obsessive swimming, and try and get Twang Arm in line with some new activities.

However, it does mean I do have big questions for Dr W2 in Bangkok next time. I do want and need to know how and when we are going to know if everything we are throwing at the cancer beast has indeed has indeed sent it running!

A footnote before the note?

Now I am having fun – playing with the dimension of time and putting a blog post before a post!

The next post is one which has been in preparation for a few days, and touches on some heavy stuff.  The reason for this footnote is put it into perspective a bit before it is read.

Right at the outset of this blog, I stated that there are different reasons for me recording and sharing this experience.  And to be very honest, the biggest part is the selfish one.  It helps me.  It helps me to process this heavy stuff.  It gives an outlet for the heavy physical as well as the emotional path which I am travelling.  It helps me to deal with it because it is less overwhelming once it has been chewed over in my mind over and again and then set out in black and white text.  This whole process means that by the time the heavy words appear on the blog I already feel lighter and see things more in perspective!

So please remember that when you need the next post that I felt a lot better after writing it than I did before!