In the Beginning
I started to write my blog margaretcahill.wordpress.com just after I was diagnosed with Mantle Cell Lymphoma in December 2012. Friends and relatives wanted the very latest and up to the minute news (things progressed pretty fast after diagnosis) and my partner Stephen and I got so tired of the 'C' word and all it involved that we became desperate for a break from the texts and phone calls. A friend suggested I write a blog that we could direct everyone to, so I did, and - bingo! - it worked.
What it also did though was provide me with an outlet to write down all the crazy things that were happening. In fact writing it all down - like the crazy belt across the countryside in blog #2 - made everything a lot more bearable, as I was able to inject some pretty dark humour into most things. Some people write a diary, which I tried for a couple of days, but it really didn't work for me. I felt an urgent need to just put it all out there to explore what the hell was happening to me in the clear light of day.
And once I did the results were astonishing; rather than scaring people, I was getting comments and emails from people who were relieved to be reading what was sometimes difficult and upsetting, but was finally out in the open as it helped them deal with their own situations. So I really let rip when it came to NHS procedures I thought were pointless (water jugs being changed at 5 AM) and definitely unhelpful (constant disturbances when you are trying to sleep). I also used it as a platform to praise and glorify the totally amazing people that looked after me on the ward, and who helped me retain my sanity by letting me put up a big DO NOT DISTURB notice when I wanted to meditate.
Don't know about you guys reading this, but I was in a whirlwind of scans and tests due to the aggressive nature of the MCL and I felt as though I had been picked up and dumped in some alternate reality. I said right at the beginning of the blog that I was sure I had pushed the door marked 'Health Club' and somehow ended up in a cancer ward. Whaaaaatt?!
Yum. A Few Goodies that Help
It took some time and a couple of blogs to get anywhere close to finding my feet again. The aggressive nature of the MCL was such that I didn't have the luxury of sitting around meditating on what to do (although obvs I would have preferred that option) and so it was that one of the most alternative people on the planet - in regard to medicine - ended up on a drip attached to a bag of extremely toxic chemicals, pretty much immediately after diagnosis. Clearly not an ideal scenario, but as the first drops of poison entered my system I became determined to do what I could to get out of this in the best shape I could. There are loads of my blogs that cover the details, but essentially once treatment started what I realised is that a) chemo almost always causes ulcers and b) I wasn't planning on taking drugs or having revolting chemically laced mouthwashes to get rid of them. So given that the dietary advice I was given at my first pre-treatment meeting was just to 'eat my five a day', (outdated at best) it was pretty much up to me to investigate alternative ways of dealing with any discomfort that might arise.
With the help of some amazing nutritionally aware friends, I started to accumulate my arsenal of weapons for self-preservation. And much to the amusement of the nurses and my totally wonderful consultant, this ever-increasing bag of goodies followed me into the ward for each treatment, along with my pink duvet, purple laptop, Fenella (see the below) and a whole load of other sanity-saving equipment. In fact Fenella gained some notoriety with the medical staff as she really is quite scary in person, and I made sure that she was in their eye-line when we had ward rounds and we were discussing the treatment plan. To give them credit, they did manage to keep a straight face most of the time :-)
I turned to Vitamin A - one drop a day - to stop the mouth ulcers, and by heavens it did. After 5 rounds of chemo (1 every 3 weeks) I had a final round - just before my autologous stem cell transplant - which contained melphalan, a drug which is absolutely guarnateed to trash the gut, assuming there is something left of the gut to trash. I was still taking my Vitamin A drop every day, and did I suffer from ulcers at this point, or ever? Non, mes amis, I didn't. I was offered morphine for my non-existent ulcers and I had to prove over and over again that apart from a grim taste in my mouth, I was fine. I was the only person on that unit to be ulcer free, all the way through treatment. So if you are going through chemo right now BUY THE VITAMIN A!
Several other goodies helped me to retain some element of control over the havoc being wreaked on my poor body. Vitamin D3 is incredibly important in supporting the immune system, so 2 drops of that a day went on the teaspoon along with the Vit A, and I added those to some omega oil to give me a bit more of a boost. Have you tried Aloe Vera juice? Buy the Pukka one as it is organic and is made from the inner flesh of the leaves, which makes it a bit less bitter than other makes. Take a couple of spoonfuls before eating in the morning and it helps to calm your stomach.
Oh yes, The Stomach. I have heard from other people that they weren't sick at all during chemo, and I rejoice for them because I was. The first round of chemo was fine, but as soon as we got through the doors for the second round my body did the equivalent of your cat hiding in the pet carrier at the vet. Noooooooooo. Not doing this one, sorry. Sickness was pretty much ongoing after that, so I won't bore you with the details, but the drugs they gave me either caused hallucinations or vicious headaches (that was scary, see blog #13) which then needed more drugs. That was a road I really didn't want to explore any further so I used all kinds of organic herbal teas like peppermint, ginger and chamomile depending on what I could tolerate, and tried to eat a teeny bit of food every so often as I found that hunger often made the sickness worse. I also tried a sea sickness band borrowed from my lovely friend Lyn, and alternate nostril breathing. Almost anything, in fact. There is loads more information on the Vits, Tips and Resources page of my blog which will help you through the worst parts of chemo, along with tips for other treatments and therapies, and there is also a handy recipe page which I am constantly adding to as I discover more food that is both tasty and good for us. Healthy food doesn't have to be dreary.
It has been known for me to drag out the odd soapbox on my blog, but I promise to be well-behaved here, especially as this is my first blog. If you want to have an overview of what has been going on, see my latest blog ( # 74, as at time of writing), but in a nutshell, I do believe that nutrition is INCREDIBLY important in surviving cancer. As is our mental/spiritual attitude, but I'll go into that if I am allowed back here. My blogs were turned into a book, Under Cover of Darkness: How I Blogged my Way Through Mantle Cell Lymphoma, which you can see reviewed on the Macmillan site, and in some of those reviews people were genuinely astonished that eating good, wholesome ORGANIC food could actually aid survival through what is a totally barbaric regime of treatment (my consultant's words, not mine). I know there are treatments being developed now that will hopefully cause a lot less collateral damage, but until those are in the mainstream, support is needed on all levels. As I see it, a compromised immune system which is under attack from noxious drugs needs all the help it can get. So surely it makes sense to eat the best possible food. Which means unprocessed, and untouched, as far as possible, by herbicides, fertilisers and pesticide. If you still eat meat, make sure it comes from healthy, organic stock that is fed proper food and allowed to range free. As Jamie Oliver pointed out, a chicken which sells for £3.00 after a very short, antibiotic and growth hormone fuelled life not only had a pretty rubbish existence, but it won't do the person eating it a lot of good either. And also as just seen in a post on Facebook:
You are what you eat.
So don't be fast,
I love that one.
So there we are, people. Do pop into the blog and have a nose. There is a lot of stuff on there that helped me retain just a tiny bit of control and independence when I was going through chemo, and I hope it helps you too. Oh, and just wanted to say that my amazing consultant, Dr Joe Chacko endorsed just about everything I did (see blog #18 for just one little hiccup), so it is really important to get The Team on your side, from the dinner ladies to the consultant.
Your life, your choices.
With warmest wishes for your good health