Treatment has failed.....the next step

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I was so confident that I would have many years on the hormonal therapy I had, by now, adjusted to.  Yes, my tumour marker was looking a bit worrying.  It would climb up one month but it would drop the next so we assured ourselves that it wasn't a real problem.   I was still defiantly positive and as determined as ever that I would pass the five year mark.  The only problem with the climbing and dropping scenario was that each time the tumour marker climbed, it climbed a bit higher than it had the previous month.  I was starting not to like that very much but my CT scans of my organs were still normal and my bone scan was no worse so we decided we'd ignore the tumour markers and concentrate on what the scans showed as I was having them three monthly.

Then my tumour marker decided it didn't like being ignored so it did a large jump to assert itself and the following month it did the same thing.  It had taken three upwards leaps in a row.   I had the choice of having a scan almost immediately or waiting one more cycle to see what the marker would show first.  I decided on the scan.

At my next visit to my oncologist the news wasn't good.  The scan showed a 2.5cm tumour and a lot of spots and shadows on my liver.  When Andy told me, as I exhaled the breath I had been holding I whispered, "Oh no".    It meant that the tumour marker was right all along.  My already shattered immune system was trying to beat another area of cancer and it was in an organ.......not good.  This was what I had been dreading but had been so sure wouldn't happen.  I can't describe what my feelings were....I think they were a mixture of relief, strangely enough, because I'd known we were kidding ourselves over the tumour markers; sadness because things were getting more serious and because it meant more work for my son if I became more sick than I already was.   My oncologist described the disease in my liver as "moderate".

We discussed further treatment.  I was adamant I wasn't going to poison my body with chemo, not because I am irresponsible and was ready to throw the towel in.  I just knew my already battered body wouldn't stand up well to a stint of chemo and in the circumstances,  chemo would be just a huge burden on both my son and myself with no benefit to come out of it. Metastatic Breast Cancer is incurable.  I have it in every bone in my body except, as far as I know at this stage, in my arms.  Now it's in my liver and that changes everything.  When cancer is in your bones, it's excruciatingly painful but the bones tend to contain the cancer for longer than organs do.  I had to take into account that the previous scan I'd had in February showed no evidence of disease in my liver, yet there it was in May, already setting up residence in my liver so it wasn't planning on having a short vacation, it was here to stay and it hadn't taken long to go from clear to having quite a lot of disease.

Since I knew my body couldn't stand up to chemo as it is already very frail, and because the disease is incurable, I took the only other option available to me....."chemo pills"...so called because they target the cancer cells but not the normal cells in the body.  It seemed to me like a good deal as a way of buying a little more time.  That treatment would end up failing at some stage too, I knew, but I had to try it!

My height and weight had to be calculated on a graph to decide on dosage and my oncologist gave me quite a high dose, considering I am small, so I figured his plan was to really go after those cancer cells in a big way.  I was willing to try so we did.  These tablets had to be taken three times per day as they have a very short half life and leave the body very quickly   Within a few days I  felt terribly ill with constant nausea.  I hated the thought of having to eat food because it made me sick yet I felt sick if I didn't eat.  My skin started to come out in red blotches which hurt and my throat became thick with phlegm.  The course is two weeks on tablets and one week off to recuperate.  As it happened, by Day 9 I woke up to find my throat had closed over with phlegm and my lower lip was completely ulcerated and twice to three times its normal size.  I felt so ill!  I struggled to sip some warm tea to clear my throat and I couldn't really eat as my lip was stinging, with ulcers taking up most of its surface and already looking as though they would bleed under the slightest  pressure.

I called the oncology centre and spoke to a registrar, who told me to cease the tablets immediately and to finish out the cycle, time wise, and then go for a blood test when my next cycle was due and visit the cancer centre the following day as usual.  If my bone marrow had managed to repair the damage done to it by the chemo pills, we would start a second cycle and that was exactly what happened but my oncologist lowered the dose of the pills.

I managed to struggle through the second cycle, feeling even more horrible as each day passed until I finished that cycle but I was a wreck.

During that time I had been giving thought to this whole "fight to the bitter end" approach that so many cancer patients and doctors and friends advocate for everyone.  This had begun to disconcert me right from the start of my cancer journey.  After my experience of the previous almost three years I had come to the conclusion that there are only two people who should be involved in the way you approach having an incurable disease - the patient and the oncologist.  Family can be involved insofar as they listen to you and give you support but when the discussion involves quality of life, there is only one candidate for that discussion and that is the patient.  Other people should keep their thoughts to themselves, reserving their words for words of compassion, love and support.  To tell a cancer patient they must fight on is insensitive and shows a lack of compassion.  It's easy to sit on the sidelines and tell someone they don't have any rights over their body when they have had no similar experience.  Only the patient can know how much more they can stand.  In a case like mine in which I could not expect anything more than months to live once my liver became involved, it's very thoughtless and even callous.

My instincts were telling me it was time to give up treatment before I became too ill and enjoy life for that window of time.   I thought it through very carefully and more and more it made sense to me.
I knew I was going to finish struggling with treatments and allow my body to go through the process I could not avoid; the process of detaching myself from the material world and embracing the next part of my eternal life.  My body would have to deal with a difficult, unknown span of time while the cancer went to work on it.  I am not afraid of dying.  It's younger than I expected it to be but it feels right somehow.  I am at peace with it.

I was selling myself short by saying I wanted to reach five years.  I've had this cancer since 2010 and, for six years it evaded diagnosis.  In October, 2016 it was diagnosed de novo Stage 4 which means it was Stage 4 by the time it was diagnosed.  It was treated for almost three years.   I passed the five years a year before it was diagnosed.   The five year statistic is the number of people still alive at five years having been treated.  I've struggled with this cancer for eight years or more, treated and untreated so I don't feel cheated, nor do I feel I haven't fought hard enough.  The last nine years have been horrific.

Before I finish off this blog, which I hope is not my last one, I must add a few words of advice to those who feel it's their place to tell cancer sufferers they must fight on.  You might believe that you're being encouraging by telling patients not to give up and to fight on but you cannot possibly know that that's the right thing for them to do and although you mean well, when a disease is incurable and all treatments have either been used up or are too harsh you don't have the right to tell someone they must keep trying right up until death.  When you have advanced disease the end will happen at the right time.  To force someone to try to live a life in which there is no quality at all is insensitive, inappropriate and even cruel.  Once a victim of incurable cancer has made their choice the best way of showing friendship is to show them you care for their quality of life.  It is selfish to try to make people stay because it makes you sad to think of them dying.