It’s been a month since I was told that the major ‘curative’ total pelvic exenteration surgery was no longer an option. I think that I have been mentally only semi-present for much of the time. Excuse me, if I use this entry to explore my feelings as I write, I am still coming to terms with our new reality, although not actually very sure what this is yet!
On 24th July, I had the fateful meeting with the oncology team and received the news that cancer had now appeared in three new parts of my body: my liver and both my lungs. In some kind of parody of Master Chef, I am now doing cancer 5 ways. Surgery is no longer available, and treatment options are palliative only. The team, wisely, do not press me for a decision and arrange a follow up meeting for two week’s time. I leave with a bundle of notes on the palliative drugs and hollow insides. Fortunately, one of my wonderful friends has taken me in for this appointment and they look after me for the rest of the day.
Two weeks later. We meet the oncology team again. I ask many questions about the treatment and some bigger questions. At a previous consultation, I had been advised that the TPE surgery was really my best option and that, without this, my lifespan would be measured in months and that a bowel cancer death would be messy and painful.
Question ‘How long have I got if I don’t have the palliative treatment and how long if I do?’
The answer to this question is. Six to twelve months with no treatment and twelve to eighteen months if the treatment works. It is apparent that these time scales actually overlap, and the oncologist is very honest that if the treatment is successful, that it will extend my life by a few months.
Well, that’s not very long. Measuring my life in calendar events, I have a maximum of two Christmases left.
So, do I sign up for the palliative chemotherapy or risk the shorter timeframe? I’m not feeling ill, and I am pretty much recovered from the heart valve repair. I have walked reasonable distances and even managed a 30 mile bike ride. Do I want to sacrifice this for 3 months of chemo poisoning?
Of course I sign up.
The drugs may slow or even reduce the tumours. And I can stop the chemotherapy if the side effects become too unpleasant. And there’s always hope that something else will appear over the medical horizon or maybe, just maybe, I will somehow survive this longer and in better health than the statistics indicate. We have our middle child’s wedding next summer and I would like to be there, and I am not ready to surrender just yet.
This regime is two drugs. Irinotecan with 5FU and folinic acid is a chemotherapy drug used to treat bowel cancer. The second drug is Panitumumab, this is a type of targeted therapy drug called monoclonal antibodies. Panitumumab can slow cancer growth by attaching to and blocking the epidermal growth receptor proteins on the surface of the cancer cells.
The plan is for six cycles of treatment. With drugs infused every fortnight and 11 drug free days between the completion of one cycle and the start of the next. Then scans and a review. If effective, the regime can be repeated for as many times as I can tolerate it. And I can have six week breaks between regimes.
The drugs have to be delivered through a PICC line. A peripherally inserted central catheter. A very thin tube is inserted into an arm vein and pushed along until it reaches a bigger vein in the chest. The drugs are then sent along the line.
A year ago, I opted not to have a PICC line. I was frankly squeamish about the idea of a line being fed up my arm and for it being in-place for several months.
Oh, how times have changed! I have had more things inserted into more parts of my body than I can remember! Big knives and cameras up my bottom, numerous cannulas and goodness knows what kit fed up a vein from my groin and into my heart. And I have learnt that there are no nerves inside our blood vessels, so I won’t feel the line once it is in.
And having the line inserted is painless. There is a follow up X-ray to check that it is in place, and I cause a degree of excitement in the X-ray department; ‘do you have metal in your chest?’ My new heart valve clips are a completely new thing for the Somerset radiographers.
24 hours later and I am in the Beacon Cancer Unit for session one. This is several hours of drips and flushes. I feel more and more tired as this progresses and start to feel very down about the situation. Not all of the drugs can be delivered at once and some of the irinotecan will be pumped in over the next 48 hours. The pump is a very small plastic jar containing a small balloon filled with poison. There are no batteries and no motor. It is really rather clever and neat and works entirely on physics – the elastomeric balloon deflates at a known rate and delivers the medicine over the prescribed time.
So, here I am, four days into cycle one of six. All the drugs are in and I have nearly two weeks before the next cycle begins. My main physical symptom is fatigue. I have been doing a lot of sleeping. I do feel mildly nauseous, but this is manageable. And I have already developed a few food aversions; I think I may be eating many poached eggs over the next three months!
And mentally? I’m not sure about this right now. I recognise that I am in a challenging place. I am finding it harder to get on with other things and do the non-cancer stuff. I am though, going to give myself a break for a couple of days and have some quite low expectations on what I can achieve. With luck, the toxins will subside a bit and I will get some more energy for several days before the next cycle commences.
24th August 2024
