So I have been a bit quiet since my last post. I was surprised how much of a knock the scan result felt and how quickly I became down and rather frightened. I began to catastrophise about what this could mean. Would it never go from my liver or even get any smaller? My oncologist described it as stable so while no progression, there was no visible reduction. If my liver mets (short for metastases) are only stable by the end of the treatment then if it does subsequently progress it is starting from a base of ‘extensive liver metastases’ rather than no evidence of disease (this is possible and does happen) or even a few spots left over. I paid less attention to the fact that I actually feel incredibly well considering and that my liver function is good and the damage/inflammation markers have halved. He described in a subsequent letter to my GP 3 possible positive takes on the lack of progress on the scan. These were 1) the rapid onset might mean it is slow to respond (my response to this is how do they know it was rapid. I had not tests or scans or anything so frankly no one has any clue how long I have had mets in my liver – symptoms are rare until it is quite progressed. I had a huge cocktail fest in the summer when we visited Rupert’s Aunt on a family holiday and although it was a very fun evening I felt extraordinarily nauseous and ill the next day – which could indeed have been a normal hangover but I remember thinking that first I had not actually drunk that much and that I really did feel strangely bad. Maybe I had the beginnings of it then? Who knows? I digress). The second reason could be that the scan itself does not distinguish between dead and alive cancer – as it is a CT scan it shows mass. It is the PET scan which shows up live cancer (and I have not had one of these yet – and as they involve injecting something horrible I am not sure I want one too often). Thirdly dying cancer could be creating a ‘pseudo cirrhosis’. Cirrhosis of the liver – despite it being quite a tough organ, never goes away. So this would not be good really.
Since then I have had one further chemo after my week off and my liver mets are still improving and the pressure under my rib and slight tenderness feels less pronounced so I am feeling more hopeful. I cannot believe that with all the changes I have made to diet and supplements that not only are they helping me with the side effects but in their own right they may be facilitating cancer death or tumor suppression.
The day after the scan Ella and I traveled to the Penny Brohn Centre in Bristol (www.pennybrohncancercare.org). This is an amazing resource for people with cancer. Established by Penny Brohn who was diagnosed with breast cancer and could not believe that the only support and services available to her were through oncology services and the only options radiotherapy, surgery, chemo. Burn. Cut. Poison. There was no attempt to support people to improve side effects, the quality and with that possible length of life. No focus on essentially the terrain within which the cancer was born. Diet. Spirit. Emotions. Mind. All of these things fundamentally affect our cells. Why do people get cancer in the first place? We all have cancer cells and our immune systems can be very effective at identifying them and gobbling them up (or whatever they do). Something happens which makes them less able to do this and cancer takes hold. Genetic disposition can make this easier but not inevitable. So if someone with cancer seriously wants to influence their outcome do they continue the lives they lead before the cancer. A life which clearly lay the foundations for the immune system to crack and the cancer to take hold? Or do you examine your ‘terrain’ and determine what might have contributed to this disease taking hold and consider what you might do to influence its progress. The simple fact that I have managed through diet, supplements, yoga and acupuncture to get my side effects under control and lead a pretty normal life (as much as you can with a compromised immune system) simply makes me more convinced of the power of the body to heal itself given the right conditions. The limitations of current standard therapies are well documented and to simply follow this blindly and pay no attention to any other routes would in my view hasten my demise. This does not mean I do not believe it has a role and some of the newer therapies being developed are a completely different ballgame to the chemotherapies which have dominated oncology for so many years.
If you have time I strongly urge you to watch the following documentary:
Penny Brohn set this centre up to offer an alternative and it has since grown into this amazing sanctuary for people living with cancer. They run residential course (among many other things) in a lovely house which has been converted into a sort of specialised hotel, serving vegan and vegetarian food (if needed) so perfect when you are on a diet like mine. They have a library, art therapy, cooking and nutrition classes. We arrived in the evening after a mammoth 4 hour train journey from Brighton on the worlds slowest route which stopped at every possible station – as I had relatively recently had chemo I did find this quite tiring. This was also the furthest I have been away from my bed and support systems since starting treatment. I was very low as I was still absorbing the scan results so was rather tearful the day we arrived.
We had a brief welcome session and mediation on arrival where we met our ‘group’ for the first time. It was as if someone had gone into a shopping centre on a Saturday and literally picked out a random 10 people. We were all so different. Ages. Backgrounds. We ranged from Ella at 18 (who was a supporter) to mid 70s I would guess. With a 31 year old with ovarian, 37 year old with breast cancer, a couple with Hodgkins Lymphoma, a recently retired woman with breast and two with late stage inoperable and untreatable lung cancer, and one other supporter – the husband of one of the women with lung cancer. But the bond between us was immediate. Nothing really mattered in our differences but we were simply bound by what connected us. The freedom to speak with others who were all grappling with many of the same emotions, the insecurity and uncertainty, the grief and also the joy and love that comes with a diagnosis like this. There was lots of crying on and off over the course – but this was good liberating crying. It was a place to be able to talk about some of our deepest fears and our grief. The change in relationship with our friends and family from the strong, dependable sorter to the dependent. I don’t want my children to see their powerful, vibrant mother become a needy shadow. I want to live and to live well. To make cancer something I live with and tolerate but that does not consume me. I want them not to fear it but to understand it. I know I cannot repress my emotions about it. I know it does frighten me and I do grieve but if I can find ways of managing that and living for now and living happily and well in the everyday then this journey will be far more tolerable. And this is what the sessions at Penny Brohn helped me see were possible and began to teach us ways of achieving this. I have always known mindfulness was a useful tool but I am sure I am not alone in not really ever learning much more about it or even if I have practicing it properly. Suddenly it offered such an obvious strategy for me to get through everyday. They reminded us that thoughts are really just imaginations. Things that may or may not happen and when you wake up at night and the demons descend you can either indulge or use approaches like visualisation or breathing to bring your mind back to the now.
Within the group were other people with stage four cancers and it was brilliant to share with them the research we have all done on complementary therapies. The husband of one of the women with lung cancer had spent his first 6 months of retirement researching therapies. She had had a previous unrelated breast cancer many years ago and they had treated this with alternatives and it had never returned so he was already well informed. We now talk on and off as we share knowledge and updates from our various research and have both introduced each other to new therapies and contacts.
I returned home reinvigorated and am ploughing on as I design a treatment and maintenance plan, including how to detox myself of the chemo and rebuild my immune system when this chemo ends. I will write a blog shortly specifically on some of these therapies and the very strong evidence that exist which support their use as a powerful anti cancer product. It will also touch on the perverse approach to cancer treatments (and I am sure this applies to other diseases) which see the powerful pharmaceutical companies dominating what comes onto the market and is subsequently registered and the finally made available as a ‘standard treatment’ often years after the initial clear evidence of benefit. This delay relates to our systems for registering drugs and then having them incorporated into for eg NICE Guidelines. Then if we are lucky the NHS will cover them. In the meantime the likes of turmeric gets cursory notice within standard treatment and I am not sure you would hear the average oncologist suggest you explore it. There are products out of patent with strong research underpinning their potential and proven impact on cancer but will they ever attract the millions required for the randomised control trial needed before they can be recognised as a ‘legitimate’ cancer treatment.
The more I read the more I am outraged. In the meantime there remains among so many a blind faith in what oncology has to offer and a nervousness about going beyond this. There is a sense that us poor stage four cancer patients are simply grasping for straw. Hope being our sustenance. All you have to do is take a cursory look on the internet and the voices of cancer patients surviving longer than everyone expected, telling their stories of how they helped heal themselves and the prolific research into other therapies which often show in principle better potential outcomes to standard chemotherapy and I hope this will open your eyes. In the 1980s HIV patients stormed the Capitol. They wanted access to Phase 2 tested drugs. Knowing that by the time the Phase 3 trial was complete they would be dead. Why could they not take the risk that the drug may be too toxic or not quite the right dosage or even that it might counteract each other. And they won. As the documentary Surviving Terminal Cancer suggest also –advanced cancer patients need better access to both promising treatments sooner as well as a revolution in the way cancer therapies are evaluated and then offered as treatments.
Oooh…I am on a roll. You will hear more about this.
Penny Brohn is a haven. Ella and I still managed to flood our room. We thought we had successfully mopped it all up with our towels only to find out at supper that the Art Room had flooded and they thought it was coming from Room B1. Ooops. They have silly plugs which automatically close. And no overflow on the sinks.