No one told me that getting on with life after cancer would be so hard

In my last post I shared my apprehensions about the new elephant that has taken possession of my brain, albeit momentarily, and is creating havoc in my body demanding to be acknowledged, heard and then sent to a tiny corner. Everyone in my nuclear family and extended family of friends and well wishers are looking forward to the 27 December 2013, the day of Ranjan's last chemo. The mood is almost euphoric as they countdown to 0. I had initially shared the elation but for some days now, I have found it difficult to do so as when I think about it, I realise that much of the glee is once again based on the seduction approach of the chemo sellers. It was the oncologist who first said that all be well after the required numbers of chemos!

December 27th is exactly a month away and what looms large in my mind is WHAT NEXT! One does not have to be a rocket scientist to believe that some miracle will happen on the morning of the 28th and Ranjan will wake up as fit as he was two years ago. The 28th morning will be the usual day 1 after chemo when Ranjan is really low. The difference is that though the counts will fall as usual, this time there may not be the booster injections. The PET scan will at best give a 80% all clear. 20% will still have to be taken care of by his completely blown immune system. The past 6 months could be summed up as a bad 'trip' for the immune system as it has been subjected to completely mind blowing drugs. These have taken their toll as just a look at Ranjan's blue nails is proof enough of the fact that the immune system has a lot of work to do before it rids the body and all its organs of the toxins that have been pumped into it with alacrity and even impunity. The fight is on!

As I wrote in my previous blog, we have been lulled into a (dis)comfort zone of life in 15 days cycles. A study reveals that it takes 66 days to form a habit. We have lived this way for over 150 days. Now we will have to unlearn this and get accustomed to another rhythm and if we begin in earnest on the 28th then I have less than a month to work it out.

Step one was to simply google 'Life after chemotherapy'. What you get is nothing short of scary. The first article I clicked on was : No one told me that getting on with life after cancer would be so hard. The article is written by a doctor and the part that caught my eye was: But when treatment is over? Well, life gets back to normal. Right? Hmm … not so fast. It’s just not that easy. That’s what we forget to tell patients. Getting back to normal, getting on with life, is harder than everyone expects. Yes Dear Doctors you forget to tell too much to poor unsuspecting and trusting patients who hang on toe very word you say as if it was God's Gospel.

Getting back to a normal life before chemotherapy has wrecked your body and soul is no mean task. Maybe one has to find the new normal, not just for Ranjan but for all of us. I know the new normal will be again life in cycles. I guess this time the cycles will be longer: from one test to the other. But cycles there will be with their share of angst and fear and also hope. But life will never be the same again.

So what do we need to fear? A question that has to be addressed so that we can all conjure our coping strategies. I am reminded of the time when shortly after my father's death I had some health issue and needed to see a doctor in Paris. When he heard I had lost both my parents to cancer, he immediately told me that I needed to have a yearly cancer check up. I was 40 then. I told him I had no intention to live the remainder of my life in fear and yearly cycles. That was then and that was me. But today I find myself thrown into a similar situation but the difference is that it is not me.

I like to be prepared. Remember, I am a control freak. I like to know the worse case scenarios so that I can have coping mechanisms ready. Hence it was time for some more digging. The one thing that sprung like a leit motiv in almost all the articles was fatigue and memory and concentration changes. Come to think of it the memory thing has already kicked in as Ranjan finds it difficult to concentrate for a given period of time. Fatigue it is said takes a long time to get rid of specially when blood counts are low as is the case with Ranjan. What is suggested is exercise, lots of fluids, meditation, relaxation and so on. I have been trying to get Ranjan on this track but with not much success.

Then comes memory and attention problems or what is known as chemo brain or chemo fog. here again I have been trying to push Ranjan to read or play brain games but gave in as chemo was on. Come 2014 there will be a lot of reading and Sudokus!

Next is Neuropathy or changes in the nervous system: tingling, burning, loss of sensation and so on. These can be alleviated with medication and can take time to go. Will have to do more research on this one.

All these are small side effects. But there are the larger ones. The ABVD protocol delayed side effects are scary: pulmonary toxicity, cardiac toxicity and secondary malignancies.

I will deal with these in a later blog. I need a break and some fresh air. Retail therapy??