Road to recovery- the physical stuff

Today is scan results day. By the time that I manage to upload this post, it may well have already happened (UPDATE – it has happened. I got the results a few days ago. More later…). I never really used to think much about scan results – I figured that whatever they said, they said and there was nothing I could do about it. However, now that there is more at stake, I find myself getting increasingly anxious to the point that I actually yelled at my little boy this morning. He had hit me, so I was partially justified, but I don’t like losing my temper and boy did I feel guilty about it afterwards. It just shows that this cancer journey thing is not straightforward. Just when you think you have a handle on it then BOOM, something happens to throw you off once again.

Anyway, if I look at this whole thing like a journey then the CT scans are just huge signposts along the way. A “normal speed limit applies” sign allows me to continue merrily along while a “diversion” or “road closed” sign can completely alter my path.

THE SCAN RESULTS

Not a normal speed limit or diversion sign as such – more like a “warning… bumpy road ahead, take immediate action”. The good news is that my liver is much improved on the last scan and my left lung is clear of fluid. Yay! Indifferent news is that my breast tumour markers have stayed the same (way too high) and my bones seem to have stabilised. Lots of cancer still there, but not worse. Bad news is that my right lung is partially full of fluid again, there is cancer in the fluid around my heart and I have a cracked rib. Yikes. So yesterday and today was a feeling-down day but I plan to pick myself up tomorrow, have a lovely holiday in Brighton with my bestie and then go all guns blazing onto the new programme that my integrative oncologist is designing for me. I may be off your radar for a while while I get my head around it.

with Tracey in Brighton
with Tracey in Brighton on our 2-day escape

Anyway, in my last post I was about to recount the experiences that led me from my initial diagnosis and state of personal despair to where I am today – getting out and about, writing blogs, and walking dogs. So, let’s get back to it. When I left off, I was planning my funeral and feeling generally pretty hopeless. Here, in a nutshell, are the first steps that led me to the here and now…

  1. Weekly chemotherapy.
  2. Getting out for walkies.
  3. Watching “Cancer: the Forbidden Cures”.
  4. Square One programme.
  5. Acupuncture.
  6. Healing retreat.
  7. Colonic hydrotherapy.
  8. Integrative oncologist
  9. Cannabis oil.
  10. Reading book “Radical Remission”.

My conventional treatment plan consisted of 18 weekly sessions of chemotherapy. The drug that I was put on is called Paclitaxol. I had my first two chemos while I was staying in hospital. It is always a little nerve wracking when starting chemotherapy as you don’t know how you are going to react to the drug. I always sit there watching the chemo drip into my veins thinking “this is poison”. Not exactly a good advertisement for a new product – “Come try our poison, guaranteed to kill a lot of your cells and make all your hair fall out”. In what other circumstances would we willingly take something like this? Sounds crazy. Luckily, I didn’t have any major side-effects then other than a little bit of nausea and fatigue.

After hospital I came home, my sister arrived for a week and my mother who had been here for two weeks, left. I spent a few days sitting in my nice new chair and letting people do things for me, like make my meals, and then one day I decided that I wanted to go out for a walk with the dog. So my sister and I drove to the local park which is only about a 2 minute walk away and she pushed me in my wheelchair while I sucked back my oxygen. After a few minutes of this I got fed up and wanted to try to wheel myself but I could not control the wheelchair and kept veering off the path. Then I had enough, got out of the wheelchair and pushed it myself. I managed to make it all the way around the park. Over the next few weeks after my sister left, a few kind friends came and we did the same thing. Then it was just a short amount of time before I was driving myself to the park and pushing my wheelchair around, then the wheelchair was replaced with a shopping trolley, then I stopped using my oxygen tanks, then I stopped using the shopping trolley, then I stopped driving to the park and walked instead and finally after about two months I walked to the woods instead and up a huge hill to the top. Baby steps! That’s what it took.

with Jarvis
with Jarvis after climbing Everest (or Oxleas Woods)

Meanwhile, a couple of weeks after being released from hospital, I had a message from a good friend telling me about a film that his friend recommended called “Cancer: the Forbidden Cures”. So I watched the film and it was very informative and interesting. Most of all, it gave me hope. I didn’t plan on going out and following any of the protocols shown in the film right away, but it did show me that there are alternatives to conventional treatment and was all I needed to pick me up a bit and start me off doing some research of my own.

At about the same time, I received an e-mail from two people that I knew with a link to a website called chrisbeatcancer.com. As two people mentioned it independently, I decided to check it out.  Chris Wark survived cancer himself and created a protocol for healing cancer naturally called Square One. By this point I had done a lot of reading about other protocols like the Gerson therapy, Essiac Tea and various other treatments available at cancer centres in Mexico. What I liked about the Square One program was that it took bits of all the other programs and put it into a relatively easy to follow protocol that could be done at home for very little cost. It also made a lot of sense and everything he said was backed up with studies and research. So I bought his book and started following at home.

So, what did the Square One program involve? A lot! So much that I could not do it all right away, but did put into place probably about 50% of it as follows (as you read this you will probably think that some of it sounds absolutely crazy, all I can say is that although there is not recognisable scientific evidence in terms of medical studies, there is enough experiential evidence of the benefits of the protocols to satisfy me – remembering that I have been told that conventional medicine CANNOT cure me):

  1. Plant-based diet. I stopped eating all animal products including dairy as well as all processed foods and sugar. My diet now consists mainly of salads and vegetable soups. As well as fruit, nuts and legumes occasionally. Particularly useful are cruciferous vegetables which have been shown to have anti-cancer fighting properties. These include broccoli, cabbage and cauliflower.
  2. I was drinking about eight glasses of juice per day consisting of carrots, beet root, apples, celery and ginger. This was taking too much time and was difficult to stomach so I now am drinking about three glasses of dino juice every day which I much prefer – a mix of kale, spinach, apples, mint, cucumber and ginger.
  3. I am taking a range of supplements including milk thistle, curcumin, frankincense, vitamin D and a good probiotic.
  4. I am eating and drinking a range of foods that are high in antioxidants including blueberries, Matcha green tea and Amla powder.
  5. The program calls for about 20 min of rebounding per day (jumping up and down on a small trampoline) to get the lymph flowing but due to the various tubes inserted into my person I have not been doing this but instead try to walk the dog every day or every other day.
  6. Caffeine enemas. It sounds horrendous but is very popular in the anti-cancer world. It basically is just as it sounds. Coffee up the bum. Not something you would find in Starbucks (please don’t go in and ask for an enema), but a special type of coffee. I have not managed to do this yet. I do have the enema kit and did try once however I forgot to take the cover off of the tube that goes into you-know-where and the water just ended up spilling all over the floor. Oops! This is on my list to start doing properly over the next month.
  7. Infrared saunas – highly recommended for people with cancer for its ability to help the body detoxify. I don’t have one yet but did get to use one on the healing retreat I went to.

That is an overview of the Square one program, but by no mean everything. It also has a heavy spiritual component which I have not really taken on board as well as a ton of other supplements.

While I was getting into Square one, I was also still having weekly chemotherapy. After about 9 weeks of chemotherapy I lost sensation in my fingertips. I didn’t realise anything was amiss for a few weeks, but I was having an ongoing war with our kitchen tap. I couldn’t get cold water. After about 3 weeks of this I was about to call a plumber when a drop of water hit my forearm and it was freezing cold. Yet it felt warm on my fingers. That’s when I realised that I had lost the feeling in my fingertips. Then I started getting a burning sensation in the sole of my feet and started to have trouble walking. This is caused by damage to the nerves, also called neuropathy. So when I went for chemo I mentioned it to the nurses, they got the doctor and my chemo was cancelled for the next 3 weeks. For the remaining chemos my dosage was lowered and I had regular breaks. Meanwhile, I was told that the neuropathy often does not go away. So I decided I had to do something about it and figured acupuncture might help. I found a good acupuncturist near me and have been going weekly ever since. And it did help! The neuropathy in my feet is gone and my fingertips are still slightly numb but not nearly as bad. And I really enjoy the half hour of lying still – having needles sticking out of me means that I can’t get up and move about like I tend to do. Enforced relaxation! And my acupuncturist also does Cranial Osteopathy so I get a bit of that too. Don’t ask me how that works!

At about this point in October I went away to a detox retreat near Taunton. But, being me, this was not a bunch of hippies sitting around a wooden hut in the middle of the woods with no running water and a hole for a toilet. This was a gorgeous manor house with all mod cons and a terrific cook.

The Amchara retreat – the house is just visible in the background

The idea was to have some “me” time to process everything that had been happening and while I was there to do some treatments and partake of their nutritious juicing program and healthy raw, vegan meals. I stayed for five nights and on the last two days that I was there I did a juice fast. This just means that I had nothing but juice (I also had bone broth every night as recommended by my acupuncturist and integrative oncologist). I went for daily walks in the woods, did a lot of meditation, met a Kuwaiti princess and her two Pilipino servants called Jennifer (at one point there were 7 people at the retreat, 4 of whom were called Jennifer), had a few sessions in the infrared sauna and tried some therapies including colonic hydrotherapy. Why, you may ask, would I want to have somebody put a tube up my bottom and shoot water around my colon? Well, I figured if caffeine enemas are supposed to be good for detoxification then colonic hydrotherapy may have the same effect. Did it work? I have no idea, but afterwards I had a very flat stomach for the first time in my entire life (helped by the juice fast). And I felt very light. Would I do it again? Let’s just say that I am in no hurry to get out there and find my local colonic hydrotherapist and if any of you reading this know of a colonic hydrotherapist yourself and are thinking of sending him/her to me for a complementary treatment then I hate to tell you but I will most likely be busy washing my hair that day. I would, however, do another juice fast and probably will be embarking on one next week. The idea of fasting is that if the body is not busy digesting food, then it diverts the energy into strengthening the immune system. Juice fast and even water fasts for periods of up to 2 weeks have been shown to be very beneficial for fighting cancer and other diseases.

on the retreat
with the “Jennifers” and wild horses on a walk at the retreat

Physically (and emotionally) I felt great after the retreat. The day I returned I went up to the hospital for the results of a CT scan that I had before I left. It was very good news. The scan showed that the cancer in my liver was dying off, the holes in my vertebrae had filled in and the fluid on my lungs was greatly reduced. Yippee! Was it down to the chemo or supplementary program or both? Who knows. Unfortunately I got a bit complacent after that scan and eased up a bit on my diet and juicing regimen, partly because I was finding it nearly impossible to make and consume the required amount of juice per day.

I recognised the difficulty that I was having following such a strict regimen and decided to go and see an integrative oncologist. This is an oncologist who uses supplementary treatment as well as sticking to mainstream medicine. I wanted to know that what I was doing is right for me and to have a program designed for me based on my individual needs. Being in London I had quite a selection to choose from but they are nearly all based on Harley Street and cost an arm and a leg. The one I ended up choosing was written about in many articles and seemed to care more about the work then the money. He looks more like a mad scientist, then a doctor and was one of the most knowledgeable people I have ever met. He arranged for me to have some blood tests and, based on those tests and the results of my recent scan is designing me a program of diet, supplements, medication and lifestyle changes to try to heal this thing from all angles. I expect the program to come in next week at which time I will be replacing my current protocol with this one.

One thing that he mentioned, that I was already onto myself, is Cannabis oil. Cannabis oil happens to be very good for fighting cancer. There are two main components of cannabis oil: THC (the illegal stuff that gets you high) and CBD (the non-psychoactive component that is now legal in the UK). CBD is very useful for treating the side-effects of cancer and chemotherapy (like nausea) but it does not kill cancer cells. THC has been shown in some studies to be effective at actually killing the cancer cells. Many, many people have cured their cancers using a full spectrum cannabis oil. Anyway, I am taking a super strong cannabis oil. So strong, in fact that I have been unable to take anywhere near the dose that is required in order to be effective. Which one am I taking? Let’s just say that if I was taking the illegal one, I wouldn’t write about it in a public blog. So you can use your imagination or ask me when you next see me. Either way, with the chemo now finished and the not-so-great scan results, it is important that I increase the dosage quite quickly so that is my mission over the next few weeks.

radical remission

Somewhere along this journey, I read an absolutely terrific and inspirational book called “Radical Remission” by Kelly Turner. This book was on my wish list but my aunt came to visit in September and brought me a copy of the book, completely independently. I highly recommend that anybody with cancer or who is close to somebody with cancer reads this book. Basically, Kelly Turner was working in a hospital when she noticed that on occasion, patients with stage 4 cancer were going into remission and the doctors would record this as “spontaneous remission”. Kelly then decided to look into this further, I believe for her Ph.D., and ended up travelling around the world for many years interviewing cancer patients who had gone into “spontaneous remission”. What she found was that the remission was never “spontaneous” – the patients had achieved these remissions through certain actions and there were found to be 9 things that these patients had in common, including change of diet, taking supplements and various non-physical things such as finding happiness. And this is the subject of her book.

Anyway, what I found most interesting was that out of the nine components that all of the survivors shared, only 2 were physical things: change of diet and taking supplements. Everything else was spiritual or emotional or psychological. So although at this point I was very good at the diet and was taking supplements and getting exercise, I hadn’t been addressing the emotional and psychological side of things. And that’s when I realised that what was going on inside me was probably more important to my healing process than the physical stuff. Why? I have always been very good at the physical stuff (hence my career as a Pilates instructor) and I change my diet as often as other people wash their hair, but I have never, ever given any thought to my emotional state. Over the past few years, I have had more than my fair share of traumas and my way of dealing with it has always been to brush it aside and just “get on with things”. Reading this book finally shed light on the fact that this could have been a major contributor to my getting ill in the first place and was definitely going to stand in the way of my healing. So what I came to realise was that in order to truly heal, I needed to get more in touch with my emotions. And I didn’t have the first clue how to go about doing that!

This revelation set me off on a different path and I began to explore ways of trying to deal with the “stuff” that is inside of me waiting to get out (in my case I visualise the “stuff” as a black, revolving planet. It is always there and I’ve learned to recognise it as anxiety). Those of you that know me will know that this “emotional stuff” is not my thing. I can’t meditate because my mind constantly wanders then I fall asleep, I have trouble sitting still for more than 2 minutes and my first solution to any problem is to “do” something rather than to think about. If something upsets me I brush it aside and get on with something else instead. I compartmentalise and I have become very good at it. So to pursue emotional healing meant that I would now be entering unknown territory. And that is precisely where we will be going in my next post. The wonderful world of healers, wailing noise classes (not what it was really called), and snoring meditations.

Yours in health and juice,

xoxo

JustJen

 

 

Author: Jen

Jen Ainger is a 47 year old cancer babe, previous Pilates instructor and owner/manager of Eltham Pilates & Pilates 4 Scoliosis. Born and bred in Fredericton, New Brunswick in Eastern Canada she moved to the UK in 1993 (and now would like to tell you that she knows her “pants” from her “trousers”). She trained with Body Control Pilates in 2004 and opened the Little Pilates Studio in Greenwich soon after. The studio was sold in 2014 and she saw clients in her home studio until being diagnosed with terminal breast cancer in July 2018, a life-changing diagnosis that set her off on a whole new path in search of healing, a journey being recorded in her blog. Jen is currently living in Eltham, Southeast London with her husband, whippet and 4-year old son. (Jen is now trying to raise money to cover the escalating costs of supplementary treatment as mainstream medical treatment can only offer palliative care. You can help out by donating through her GoFundMe page by clicking on the link in the menu at the top right).

2 thoughts on “Road to recovery- the physical stuff”

  1. Thanks for that wonderful enlightening and inspirational account of your journey so far. I am so sorry to hear that the scan was not as encouraging as you would have wanted but so glad you are still pushing on positively with your treatments & therapies, and I look forward to hearing how you get on, especially with the emotional, healing side of things. Sending lots of love and healing energy your way. Best wishes and lots of luck,
    Louise Beale xx

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