Life expectancy questions

One of the first things I did after my diagnosis was to search for “average life expectancy” for someone with my condition. I quickly realised that it was a futile exercise as it cannot be predicted with accuracy but overall prognosis is not good, as these examples from the internet show:

It is important to keep in mind that statistics are frequently based on people treated a few years back. For example, the most recent statistics for lung cancer from 2015 are based on people diagnosed with lung cancer between 2007 and 2011.

The median stage 4 non-small cell lung cancer life expectancy (the time at which 50% of patients are alive and 50% have passed away) is only around 8 months. The 5-year survival rate, that is the percent of people who are expected to be alive 5 years after a diagnosis of stage 4 lung cancer is sadly only 4%.
Source: http://lungcancer.about.com/od/whatislungcancer/f/stage4lifeexpectancy.htm

The most advanced stage of lung cancer is Stage 4. It means that the cancer has spread. Understandably, the survival statistics are very low for this stage. Unfortunately, lung cancer is often diagnosed late and for many people the cancer has already spread when they are diagnosed. Only between 2 and 13 out of every 100 people diagnosed with stage 4 non small cell lung cancer (2% to 13%) will survive for 5 years or more after diagnosis.
Source: http://www.cancerresearchuk.org/about-cancer/type/lung-cancer/treatment/statistics-and-outlook-for-lung-cancer

During the 2-year period, 91 of 878 patients (10.4%) developed brain metastases. Median age in this cohort was 64 years. In 45, brain metastases were present at initial diagnosis, and in 46, brain metastases developed later in the course of the illness. Median survival in the entire cohort was 7.8 months. Among patients who received chemotherapy, the survival of patients with brain metastases at diagnosis was still poor (6.2 months). Our data show limited survival in patients with brain metastases from nsclc.

Brain metastases (BM) are a common and lethal complication of non-small cell lung cancer (NSCLC), which portend a poor prognosis. Despite these grim realities, there is room for optimism among identifiable subsets of these patients. A recent published series of NSCLC patients with synchronous BM receiving surgery or radiosurgery to the brain and aggressive management of their extracranial disease reported a median overall survival (OS) of 12.1 months. Improved surgical techniques and radiation therapy (RT) technology, as well as more effective systemic treatments and multimodality approaches have led to these superior outcomes
Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4164096/

The chart below shows the cancer survival rates for a group of 1,309 metastatic non-small cell lung cancer patients who were diagnosed between 2000 and 2011 in the USA.
http://www.cancercenter.com/lung-cancer/statistics/tab/lung-cancer-NSCLC-survival-statistics/

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Stage IV non-small cell lung cancer cannot be cured, but treatment can reduce pain, ease breathing, and extend and improve quality of life.

It has been 7 months since my diagnosis, although I know I’ve had it for much longer. I feel good and healthy and am living for each day. Another five years or more is not impossible. I would like to be the one to beat the odds.

The photo below, taken at Christmas, was 6 months after my diagnosis.

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Dealing with the diagnosis

The period after I got diagnosed was very urgent and confused. I was ill and websites gave lifespan predictions of months. There was some urgency to “close off my life” and await the end.  The closing off of my life in a decent and orderly fashion, became priority. I didn’t want to leave the girls a mess of paperwork and confused notes.

I also needed to contact my insurances to get a handle on my financial situation.  I had to deal with all the incoming medical accounts.  I had to evaluate everything I own and how I could save.  What is superfluous?

We decided to pack up my house before the onset of radiation. Bianca and my sister drove me to the farm. By that time I walked with difficulty because of cortisone. We had to decide what to do with the furniture. The girls took minimal stuff as they themselves had no space and my mum’s garage is already full. The rest were sold off.  There comes a point when one has to let go of earthly possessions.  I would have all the comforts at my mum’s house.  I’ve lost all my possessions previously in a fire about 30 years ago, so I no longer thought it an issue.

I have not been able to drive because of the brain tumour (it is apparently by law, so said the doctor) and my mum has been driving me ever since.  Yes, to lose independence like that is not easy but I do appreciate what she’s doing for me. On the whole we get on well.

But I also arrived at her place with suitcases and bags of clothing. There just wasn’t space. I had to clear out big time. Initially I didn’t want to keep out summer clothes because I didn’t think I was going to live that long! Luckily Bianca persuaded me otherwise. Most of my clothes went to charity, something I still feel a bit raw about.

It was as if things were moving too fast, yet not fast enough.

I was living in hope that by the end of 2015 I would be free from brain tumours and that I would once again be able to come off the Epilizine and drive my own car. Alas, that wasn’t to be. With the new tumours, it could take another 6 months. In the meantime I have an extra car to house and support, in addition to my daughters’ cars. I therefore decided by January 2016, to rather sell the oldest model. So I no longer have a car left.

Coping psychologically

As I said previously, there is a sense of urgency and one feels obliged to reassess ones life to decide the best way forward. One may not have much time to take certain decisions and get ones life in order.  Well, that’s what it felt like for me.

I must say at Panorama they have wonderful, caring, social workers who do the rounds with the doctors. I know each person is different but with us there were no “snot en trane” and that we just got on with it without looking back or asking “what if”. That was the doctor’s advice. Don’t dwell on the past, just move forward. Take stock and plan your future.

But it does become overwhelming at times especially when one feels helplessly ill in hospital or at home, when you’re still so dependent on others. It used to drive me crazy. My environment changed so quickly, with me selling off all my possessions I felt like the carpet was ripped from under me.  I missed the farm workers terribly. I was so overrun when I received their cards and messages in hospital!

One heartening outcome was spending so much more quality time with family and friends and people I haven’t seen in years!  I always saw my sisters at my mum’s birthday in June and at Christmas, but now we were in touch daily, after I had set up a WhatsApp contact group.

Bianca immediately gave me a notebook with instructions that I start recording all my thoughts and write down my life story. That kept me busy many nights when I could not sleep because of cortisone.  It forced me to review all my life actions, good or bad.

She asked if I could start knitting, “please mum, for when I have children one day!” At least make something for your potential grandchildren. So we selected unisex patterns and thread. I made one jersey before I got sucked back into work. I could not face having nothing to look forward to but knitting each day!

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Hoody made – tick!

Even today, 7 months on, it’s still an adjustment, just to redefine my place in society and figure out where I fit in and what my future plans should be.  Should I make plans? What sort of plans can I allow myself?  One minute one feels well enough (back to normal) to resume a normal life and resume a normal work day, but along comes a day like today where I’ve had 3 hours’ sleep night before last and 1 hour max last night (again because of cortisone) and then the wheels come off in the day and I wonder if I’ll ever be able to hold down a normal day job because of this illness being so up and down?