Coping after a Cancer Setback
My three year chemo-versary is due in August. I will have survived three years since chemo finished without further aid from orthodox oncology. Now, I know that the docs in hospital will say my survival is down to better chemo. However, I have seen no case reports or journal papers documenting such long survival times for metastatic small bowel cancer. I have seen quotes of progression free survival ranging from 6-9 months. In fact median survival for the stage of cancer with which I was diagnosed, treated with chemotherapy is around 15 months.
It is now 42 months since diagnosis. I believe something else is going on. Something miraculous….
So when clinic doesn’t go according to plan what do you do? As each outpatient visit goes by my anxiety levels have climbed – particularly in the month before clinic.
It is June 30th. I have been waiting 3 weeks for the scan results. Jackie and I are on time for the appointment. I like to arrive on time even though I have had to wait in the past as clinics can be delayed by up to an hour or so… So Jackie takes her opportunity to pop to the loo…
But what now? Oh no! My oncologist comes out and calls me straight in… What – no Jackie? I definitely need my hand held. But I also want to know my scan result. I’m feeling well. I walked 46 miles the previous week and am on course for 40 more this time. I have visualised the consultant telling me that I am in full remission. I take the plunge and head to the clinic room.
“The scan isn’t so good this time…” the oncologist delivers the unexpected result as kindly as he can. It is quite a let down to hear that the cancer has progressed.. I try not to fall into despair and luckily, Jackie, my rock, enters the room. I reach for her hand and look up at her with a crestfallen expression. The oncologist explains to us my 3 options: I could have oxaliplatin and capecitabine chemotherapy again. Yuk! I don’t like option 1! Option 2 is a PET scan to see if the cancer is active elsewhere – if not I could have radiotherapy to shrink the newly enlarged lymph nodes. I don’t like option 2 either! Option 3 is to watch and wait – I am reasonably well and want to enjoy the summer – Cornwall and the West Highland Way are on the calendar!
In August 2014 I rebelled against the “watch and wait” approach but now I opt wholeheartedly for option 3. I want the summer and it’s going to be a good one! Scorchio!
But first how to cope with the heartache, fear and anxiety…….
I think to myself – it’s been 7 months since my last scan and all the tumour can do is grow by less than a centimetre- and the primary is still not visible on the scan. I am a little anaemic – that worries me but my liver, lung and bones are clear. I know if I dwell on the small amount of progression that I will descend down into a vortex of angst!
I need a plan. I pray and ask God for healing. I meditate and a picture appears of where I want to be.
If 7 months ago I was OK – perhaps something has slipped. I arrange to see my holistic Doctor Rosy Daniels. We come up with a plan – I will restart some supplements, change the timings around. I will pulse my Low Dose Naltrexone. I will take liposomal vitamin C. Take artemesinin at night, restart high dose curcumin. But most importantly I will work to reduce my sugar intake. I have been eating more fruit and grains in the last few months. So perhaps it is time to try the ketogenic diet.. It’s very “buzz”. Ketogenic – the diet sounds very technical. Also very topical – there is a lot of basic science but not too much data from clinical trials.
The ketogenic diet is an ultra-low carb diet where most of the calories are obtained from fat and to a lesser extent, protein. The idea is to starve the tumour of glucose. Reducing sugar intake is fairly straightforward for meat and dairy eaters. As a vegan, however, the diet is quite restricting as most vegetables and fruit have high sugar levels. The wonderful Facebook provided a solution for me as there are several excellent pages with tasty ketogenic vegan recipes. I am aiming to eat less than 20 g net carbs per day (the amount of sugar in one apple). The ketogenic diet is not for the faint hearted and there are risks so – readers – please consult a healthcare professional before starting on such a rigorous schedule. One of the least pleasant effects is the keto-flu which strikes about a week after starting the diet. Keto-flu is essentially a syndrome of withdrawal from the high-carb diet which is typical of the UK/USA population.
Well I have been following this diet for two weeks. It is quite exciting being the subject of my own science experiment. But, I am in the middle of the keto-flu which occurs when the body is transitioning from using carbs as fuel to using fat and ketone bodies. Extreme fatigue, weak legs, nausea and some abdominal cramps. But I just about managed camping at the weekend and walked 5 miles today. What’s more – the lump which I could feel in my abdomen – is it my imagination but does it feel smaller?? We shall see…… perhaps things can only get better!