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Journey and Survival through Mantle Cell Lymphoma Part II

by Margaret Cahill(more info)

listed in cancer, originally published in issue 226 - November 2015

 

In Part 1 of this article (Positive Health PH Online Issue 224 August 2015) I gave a very brief overview of the complementary therapies and supplements I used during my treatment for Mantle Cell Lymphoma - which comprised five cycles of extremely aggressive chemotherapy (The Nordic Regime) - followed by a stem cell transplant. In this article I’m expanding on that; it is now widely known that more patients die from the toxicity of the chemo than due to the cancer, and being armed with that knowledge I set about getting through the treatment in the best shape I could. The very least I could do was to support my body as it struggled under the onslaught of toxic drugs, and that in itself gave me an element of control in what seemed at the time to be an otherwise powerless situation.

Journey and Survival through Mantle Cell Lymphoma Part II

When I was diagnosed in early January 2013, it was immediately obvious to me that with such an aggressive cancer - 90% proliferation rate - and a very strong desire to live, I didn’t have time to sit and think about the best course of action. Alternative to my core, it absolutely galled me that I had to leap into the jaws of Big Pharma to stand any chance of clinging to life, but I did; fear played a huge role too, if I’m honest. Already debilitated by the cancer, I simply didn’t feel up to the job of taking my health into my own hands and going the completely alternative route. It was actually a relief to start treatment with the drugs I had always vilified, but with the support of a fabulous consultant, and a good friend who happens to be a cancer survivor and nutritionist, I set about increasing my chances of survival.

It is incredibly important to check the source of whatever you are putting into your body. We were relentless in our quest to find organic food as well as organic supplements; I was adamant that I wouldn’t take chemical replicants, because they simply don’t have the same life energy. Well, they don’t have any at all, do they? I was still eating meat at the time and we made sure to eat only meat from organically farmed grass fed cattle, organic eggs and meat from free ranging hens, and we didn’t touch farmed fish, which is renowned for being stuffed with antibiotics, or anything from the Pacific Ocean due to the nuclear problems coming from Fukushima. Also be aware of how heavily polluted soy crops are, as soy is often used as a filler.

I was planning on going into my first cycle of chemo armed with a huge pile of vitamins, but the first thing my friend advised was that I wait to see how my body responded; just because herbs and supplements are natural doesn’t mean it is safe to overload the body. What isn’t widely appreciated is that it is quite hard work for the body to break down and utilize supplements at the best of times, and at this point I needed to be very gentle with myself, and pay attention to what my body needed rather than giving it even more work. The first thing I noticed, even as that first bag of chemo was going down the drip, was that my sense of taste was changing and by the end of that session my mouth felt horrible. This is of course one of the notorious side effects of chemo and one that I was eager to avoid. If my mouth was sore I wouldn’t get the benefit of all the other goodies I was planning on taking. My friend advised 1 drop of Vitamin A per day to help prevent ulcers, and it worked spectacularly well, even when I had the stem cell transplant; some patients were on morphine drips to help with the pain of their ulcerated mouths, but I didn’t suffer from one single ulcer in all the time I was being treated. I used to take it in a teaspoon of Omega oil, and continued doing so even when I went into hospital. I found the staff were always interested in my ever-increasing arsenal, the ‘survival kit’ that came in with me for every visit.

vitamin-d-deficiency

I read very early on that Vitamin D3 is strongly implicated in better survival rates as it supports the immune system, so I also I took 2 drops a day in a teaspoon of Omega oil, straight after the Vitamin A. I still take it now as I don’t believe we get enough sunlight in the UK, and I discovered I suffer with SAD syndrome if I don’t take it. Of course a nice warm, sunny holiday is also a good option!

Fresh-wheatgrass-juice1

Continuing the quest to support my immune system, I took 2 capsules of Wheatgrass Protein twice a day, as it is really high in protein and packed with amino acids and vitamins. You can buy the juice from selected outlets but it tastes like very strong onion juice and isn’t particularly pleasant. I couldn’t stand the powder, which I thought turned any drink into a disgusting green sludge, hence wimping out with the capsules.

a-pile-of-fresh-turmeric-roots

The gold star supplement for fighting cancer is of course curcumin. A fabulous anti-oxidant and anti-inflammatory, I started to take this as soon as I got the diagnosis. Be very careful with the dosage though, as it can cause a sore stomach if you take too much. Curcumin is the active ingredient of turmeric, a staple of Indian cuisine. If you can get organic turmeric root it is lovely grated over your food just a couple of minutes before the end of cooking. However, it is quite hard for the body to absorb, and the best versions of it include lecithin from non-GMO soy. This is where it pays to do your research and maybe lash out on the better product even if it is a bit pricey.

Juicing

A massively important part of my nutritional support came in the form of juicing. Stephen would bring fresh juice in with him every day I was in hospital, and we always had some freshly made in the fridge when I was home. My favourite combination was half a raw beetroot, 3 sticks of celery, a handful of watercress, 1 apple, about 6 large carrots, a handful of spinach and the same of cabbage. Obviously all the ingredients should be organic. There are literally hundreds of recipes out there, so have a play around to see what suits you best. And don’t overdo it; be aware that juices can be very high in sugar due to the sheer volume of produce it takes just to get a glass of juice.  Unless you are under the care of a nutritionist limit your intake to one big glass a day.

Of course there is nothing to stop you eating the produce raw if you feel like it. I embarked on an Ayurvedic programme of nutrition for a large part of my treatment, which apart from drinking herbs especially prescribed for me by the herbalist (SO horrible!) involved making sure that 75% of everything I ate - including breakfast - was green and preferably raw. There was a point where I was going to give up chemotherapy completely and embark upon Panchakarma Shodhana, a massive Ayurvedic detox in India, but decided not to in the end for reasons you can read about in Blog #17.

aloe vera

I had three weeks between each cycle of treatment, and my aim was to get my blood count and platelets back up before I went in for the next one, and to get my system on as much of an even keel as I could in the time available. As the ability to digest good food was paramount, I needed to help my poor stomach, which was beginning to show signs of distress, although I hadn’t actually been sick with the first cycle. I really hope you’re not eating your lunch as you read this. I found that taking a tablespoon of Aloe Vera juice every morning before food helped to calm it down. We used Pukka Organic juice as it is less bitter than some of the others and that used to come into hospital with me too. Unfortunately, as I remember writing in one of my blogs, my body reacted a little more strongly with each treatment, and I was soon being violently sick despite the anti-nausea drugs I was given. And those drugs also had side-effects, ranging from punishing headaches and violent stomach aches to twitching, restlessness, and voices in my head. Yes. Usually a quiet and calm place for me to retreat to, I discovered that on occasion there would be a lot of voices in my head and it really frightened me. It became a constant battle to find something that worked, especially as by cycle 4 I was vomiting so violently that I dislocated my jaw. However, homeopathy came to the rescue; there are several remedies to choose from, depending on your symptoms, so do your research. I found my nausea was brought on by extreme hunger so Cocculus was more appropriate for me. Eager to drop the chemical anti-emetics as far as possible, I also drank herbal teas as often as I could face them: peppermint was my absolute favourite but even that can be a bit strong on a chemo-inflamed gut, so I also used ginger tea and camomile. Another nice calming drink which helped to keep acid levels low was boiled water with a slice of lemon and a couple of slices of ginger.

It has been shown that maintaining an alkaline environment in the gut helps the body fight cancer cells, which need an acidic environment to survive. There are many ways to help this, apart from obvious strategies like avoiding sweet, sugary food (and sugar substitutes):

  • Drink a glass of lemon with bicarb every day. To make this combine a quarter teaspoon of bicarb, juice from half an organic lemon topped up with water;
  • Drink a mug of linseed tea every day. Apart from helping to de-acidify the system it also lubricates the gut, allowing better absorption of whatever you do manage to take in and keep down. Really gentle and lovely, it is also a fantastic remedy for constipation, which is another problem with chemo that I managed to avoid. Take a handful of organic linseeds and boil them in about a pint of water. Watch the pan like a hawk as it will boil over really quickly and make a horrible, sticky mess. Allow it to simmer very gently for about half an hour with the lid on. Strain the liquid off and allow to cool. Use 50/50 with hot water and a slice of lemon. It really is the weirdest stuff, but your stomach will love you for it;
  • Barley water is also a lovely de-acidifier and knocks any urinary infections on the head almost immediately. Make in the same way as linseed tea, only this is much easier to handle. And you can also use the cooked barley as a nice breakfast cereal along with natural, live, full fat yoghurt. I try to stay away from dairy products as much as possible, but I found that just a spoonful or two of sheep’s yogurt helped to keep the intestinal flora in balance. it is also a good way to take in whey protein isolate, which helps to keep the immune system strong, especially if you aren’t eating very well.

Immediately before the stem cell transplant I was given a dose of Melphalan, which the medical staff nicknamed ‘The Bomb’ as it literally destroys the bone marrow cells, taking out the GI tract as it does so - all in the interests of providing a nice, squeaky clean body ready for the transplant of course, but its effects were horrendous, even with the Vitamin A. Basically, it reduces everything from the entry to the exit point of your body to a horrible sticky mess, so I was in a pretty poor way when I got home after 23 days in isolation. There was literally nothing in hospital that could sustain me, so I told them I was ‘failing to thrive’ and I was going home - to my own food. At that point I had my work cut out to reclaim my body; I was losing weight fast as I couldn’t tolerate much food and I needed to get my strength and life force back quickly. We started out with very small portions of whatever I fancied, literally whenever I fancied it, which might be every half hour or so. Sometimes it was a tiny pile of steamed spinach, or a couple of pieces of lightly steamed broccoli - I just listened to my body. When I could cope with some meat, Stephen would steam a tiny bit of fish for me to eat on a bed of steamed spinach. I had also heard from a cancer survivor that he had a whole bunch of watercress every day, made into a soup. That was lovely, and watercress is still a great favourite of mine. I suffered with incredible sickness and stomach ache at this point, and I didn’t think the Omeprazole the hospital had given me were helping. I discovered that a side effect of the drug is stomach ache, so after searching Google I discovered L-Glutamine, which helps to reline the gut as well as an impressive list of other beneficial actions, and I could feel it calming my system even as I swallowed it down - 1 teaspoon in a glass of water every day. It is tasteless and it gets to work immediately. Amazing stuff - and no more Omeprazole!

In the light of facing such an aggressive cancer, I wanted to explore every avenue open to me, on every level, so I ended up exploring some fairly strange things. Hyperbaric Oxygen Therapy, for example. Unfortunately there are precious few oxygen chambers available in the UK, but I did manage to have a few sessions before I had to give up - my treatment and blood test schedules were just too intensive to be able to get out to the HBO centre which was quite a hike away. The idea is to take a ‘dive’ a day for two weeks to get a lot of oxygen into your system, which I really couldn’t manage. However, do your research - it is looking like the results are encouraging as cancer cells can’t exist in an oxygen-rich environment. If you can’t get to an HBO centre, learn to breathe properly  - your body will thank you for it.

There is an awful lot more to surviving chemotherapy than taking supplements and watching your diet; the mind-body link is crucial here. Chemotherapy is a de-humanizing treatment which is also totally disempowering, so I found ways to keep myself strong, along with the support of many lovely people. A group of friends across the world asked to set up a healing circle for me, one that I am told is continuing even today, and in my meditations I find it very comforting to know that I am being sent such support. I also used tools to work on an emotional level. Judy Hall is a great friend and she helped me with some Egyptian Healing rituals and also taught me the Emotional Freedom Technique. (EFT). I became aware of the Buddhist practice of Mindfulness and particularly like Thich Nhat Hanh’s beautiful book Fear, which helped me to relax and focus on the moment rather than worrying about the future. I used Kinesiology to help me decide which treatments worked for me and which didn’t - that was interesting. I was sent some Jorobte tea by a shaman in Guatemala and was supposed to take four cups of it a day. I really, really couldn’t stand the taste to the point where it made me feel horribly ill. I muscle tested it and got a resounding ‘No!’, so it is a very useful tool. Just because somebody recommends something doesn’t mean it is right for you.

And I think that is the greatest bit of advice I received, to be honest, right back at the beginning. Tune in to your body, and listen to it. It will be your best resource as you face the biggest challenge of your life. I have included some tasty recipes on my blog, and also a list of inspiring and helpful reading. Do call in and say ‘Hi’ to me at http://margaretcahill.wordpress.com .

Wishing you well

Margaret

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About Margaret Cahill

Margaret Cahill publishes books through her company The Wessex Astrologer, which is based on the south coast of England. In 2013 she was diagnosed with Mantle Cell Lymphoma and started a blog to record her experiences as she underwent five cycles of aggressive chemotherapy and a stem cell transplant. As well as updating the blog on a regular basis she writes articles and is regularly interviewed on the ways that complementary therapies and nutrition can help patients to survive the toxicity of chemotherapy in better shape. Her book Under Cover of Darkness - How I Blogged My Way Through Mantle Cell Lymphoma is reviewed in PH Online. She can be reached through her blog http://margaretcahill.wordpress.com

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