Chemo Brain And How To Treat It

My brain is back.

It’s like the sun coming out after a week of rain. Except it’s been raining for over two years. The return of my full cognitive function hasn’t been as sudden as a change in the weather, but the impact on my mood has been as dramatic.

It’s like discovering I’ve been living in just one room and that my home has three storeys. It’s like discovering I’ve been driving around in first gear and my car has five gears. With hindsight, I realise how badly my cognitive functioning was effected by treatment, although living through it I probably wasn’t cognisant of how impaired I really was (and this might be one of the few benefits of chemo brain).

I know this condition has a huge impact on the quality of life of so many survivors, so I thought I’d share my best advice for recovery.

First of all, understand that as far as researchers have been able to determine, it’s not exclusively caused by chemotherapy. While we all call it ‘chemo brain’ or ‘chemo fog’ the correct description is ‘mild cognitive impairment following cancer treatment’.

The causes haven’t been clearly identified but it’s a real condition, and it can be picked up with imaging technology. In one study, breast cancer survivors not only required a larger area of their brain to respond to a question, they used more energy to do so. In another, the resting metabolic rate of the brain was slower.

So the first bit of good news is you’re not imagining things. That inability to remember your phone number, the name on the tip of your tongue or the misspoken phrase are all manifestations of ‘chemo brain’. So is a general feeling of fogginess, mental sluggishness and difficulty learning anything new.

Coping with it usually involves implementing the kind of strategies they give people with early dementia; keep lists; use a calendar and a notebook; have one spot where you always put the things you lose regularly. All of this helps but what we really want is an effective way to hasten our recovery.

The really good news is that recovery is not only possible, most people find it relatively easy to achieve.

Apart from physical damage caused by treatment, chemo brain might also be caused by a range of other factors. The main suspect is anxiety, which can cause cognitive impairment all on its own. Hands up anyone that managed to get through cancer without feeling anxious. Depression is also a common after effect of treatment and yes, it’s also characterised by brain fog. If you suspect you’ve got ongoing issues with either anxiety or depression it’s important to discuss this with your doctor.

Vitamin D deficiency could also play a part because most of us had to avoid the sunshine for several months due to either chemotherapy or radiation. If you didn’t take your vitamin D supplements and treatment just got you out of the habit of sitting in the sun then an improvement could be as close as eating breakfast outside every day. Special note here to avoid supplements with calcium in them because they’ve been shown to be a health risk and to favour sun over supplements when you can because the type of vitamin D your body manufactures in response to sunlight is more beneficial.

If you’re experiencing serious mental impairment it’s also worth asking your doctor to give you a simple cognitive test to rule out dementia or any other illness that might be impacting your cognitive function. Don’t just assume it’s a result of treatment.

Having discussed chemo brain with a number of survivors there’s now been several that have overcome their problems by dealing with anxiety, depression or vitamin D deficiency so consider those first. Once you’ve ruled out other causes there’s still plenty you can do to reclaim your brain.

Here’s my top six recommendations for treating chemo brain. Many of these are things we should all be doing to improve our health and boost our immune system so adding them into your daily routine should bring a whole lot of benefits.

Please treat this list as a menu rather than a prescription. Choose what appeals to you and try it for a few months before you rule it out. And please share any other ideas you have about this condition.

  1. Fasting (aka The Fast Diet or 5:2 calorie restricted eating)
    What it is: an eating strategy where you limit your calories to 500 on two days each week.
    Why it might help: Fasting triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Even people that haven’t been through cancer treatment regularly report improved mental clarity when they adopt this way of eating.
    My experience: My cognitive function had been improving over time since I finished treatment but my biggest step forward coincided with switching to this way of eating. Of course it’s possible that this shift was coincidental so I’d be very interested to hear from anyone else that tries 5:2 or some other fasting regime and notices a brain boost. There are lots of good reasons for cancer survivors to consider fasting in any case.
  2. Yoga (Seriously, what isn’t yoga good for?)
    What it is: an ancient practice that links physical exercise with breathing and mindfulness
    Why it might help: Research shows that yoga has a profound effect on our physiology, including our cognitive function and our ability to deal with anxiety. Some of the benefits are undoubtedly associated with the increase of oxygen to the brain but yoga has such significant benefits over other forms of exercise that it’s clear they’re only scratching the surface of what’s going on inside us when we practice it.
    My experience: I’ve written before about the profound impact yoga has had on my ability to deal with treatment and my recovery. The benefits have ranged from helping me to deal with anxiety and pain to preventing nausea. Yoga helped me to restore my energy when treatment drained it and played a big part in my recovery from surgery thanks to my physical strength and flexibility.
    If you don’t find yoga appealing then exercise will also help you to recover your brain. I just don’t think it will achieve this as quickly or as well as yoga.
  3. Mindfulness
    What it is: a practice of focusing on the present moment and doing one thing at a time. Some people use meditation to learn mindfulness and others learn it by just focusing on whatever they are doing right now.
    I use both. Mindfulness for me includes listening to recorded meditations on my iPod and paying close attention to whatever I’m doing during the day. Even the washing up can be a meditation.
    Why it might help: Mindfulness trains your brain to still the ‘monkey mind’ that jumps from one thing to another. It also helps to reduce anxiety which might be a major contributor to cognitive impairment.
    My experience: Mindfulness has helped me to stay calm and to be present. My mind functions better when it’s calm.
  4. What you put in your mouth
    What it is: Attention to good nutrition, good hydration and avoiding those things you know aren’t good for you.
    Why it might help: Food and water are fuel for our bodies and the functioning of our bodies is directly linked to the quality of that fuel. We know that children show huge cognitive improvement when their diet is improved and that it also has an impact on mood and behaviour. Recent research into the addition of fresh vegetables into the diets of older people also demonstrated improved cognitive function. We are what we eat.Water is also critical to healthy brains. I noticed in hospital that my low blood pressure was immediately remedied by drinking a glass of water and our brains rely upon a good blood supply to function.

    Avoiding those things we know are unhealthy, including alcohol, highly processed food and high sugar food will also have an impact on our brains. People with allergies and food sensitivities will know that a small change in diet can mean a big improvement in health.

    My experience: My diet was pretty good before I was diagnosed. It’s even better now. I’ve significantly reduced all of those things I know are unhealthy while still allowing for the occasional treat. We predominantly eat organic food and I cook from scratch. I’ve cut right back on gluten after I noticed (thanks to The Fast Diet) that it made me tired and bloated. I still need to work on drinking enough water every day but I’ve improved on that score too. It comes as no surprise to me that the better I eat, the better I feel.

  5. Iodine Supplements
    Regular followers will know that I’d rather get my nutrition from food than supplements but based on my own research and an examination of my diet I determined that there was a possibility that I was iodine deficient. I don’t eat a lot of fish and while dairy used to be a good source of iodine, changes in farming practices mean it’s no longer used. The clearing of the fog has coincided with the introduction of iodine into my diet so it’s worth considering. Please let me know if you have similar results. As always, I strongly recommend you discuss any supplementation with your medical team, particularly if you’re in active treatment.
  6. Sleep
    Sleep is the great healer. When I was in treatment it was common for me to sleep in excess of ten hours a day. As my health has improved my need for sleep has declined but I still regularly get eight hours. Sleep is such an important part of recovery that I’m dedicating all of my next blog post to it.

Here are some other things you might like to try:

  1. Learning a language or a musical instrument
    If you’ve read any of the recent research into neural plasticity you’ll already know about this one. It’s long been thought that the only time when the brain was ‘plastic’ and able to create new neural pathways was during early childhood. Now it’s clear that we can keep building new connections in our brain for the whole of our lives. The quickest and most effective way to do this is to learn something new. Languages and music are particularly good, but learning anything new will help. A number of people have told me they’re finding ‘luminosity’ (a web site that charges you a monthly fee to play ‘brain training’ games) very helpful. You could also try puzzle books or free online puzzle sites.
  2. Get creative
    Creative pursuits are good for your brain and your mood. Pick something you really enjoy and dedicate a bit more time to it. It might be gardening or scrapbooking or making furniture out of scrap wood. It really doesn’t matter what you choose as long as it gets you making lots of happy choices. There’s a huge surge in the popularity of colouring in books for adults at the moment. I wish these had been around when I had chemo. They’re very relaxing and great fun, combining creativity with mindfulness.
  3. Take a holiday
    A break from your usual routine can be good for your brain. It doesn’t need to be expensive or involve air travel. It might just be a weekend visiting a good friend. The aim here is to find something restful and calming. If the thought of packing a bag and going anywhere makes you anxious then stay home.
  4. Have a cuddle
    Not that anyone needs an excuse, but cuddles are good for your brain. They increase oxytocin levels and this helps you to feel calmer and happier. You can cuddle a person or a pet. You can cuddle a partner a friend or a child.
  5. Have a massage
    It’s a combination of cuddling, mindfulness and increasing oxygenation. It’s the triple whammy of treatments when it comes to helping you restore cognitive function. You can also credit it with reducing anxiety, giving you a break from your routine and helping you to feel good about your body. There are now massage therapists that specialise in treating people going through or recovering from cancer treatment, so look up ‘oncology massage’ and treat this as a necessary part of your recovery (rather than an occasional treat).

Finally, don’t give up. There’s no upper limit to how well we can be. Recovery from chemo brain is certainly possible and most of the things that help us to achieve it are things we should probably be doing anyway.

Advertisements

Cancer and Yoga

I’ve wanted to write a post about yoga for a long time. I keep running it around in my head, trying to find something compelling to say about it. The trouble is that I can remember what my attitude used to be to people that tried to convince me to try yoga. They often seemed evangelical. I wondered how anyone could get that excited about an exercise class.

Now I laugh at my own ignorance. Yoga is so much more than an exercise class but I don’t expect you to take my word for it.

I suppose the best thing to do is to just tell my story.

I really do hope that, after reading this, you go and try out a few yoga classes and that you go for long enough to get over the perfectly natural embarrassment you feel when trying something new. I honestly believe it will be worth it. And if you don’t, that’s okay too.

I started yoga about five years ago, before I’d been diagnosed with cancer. My friend, Trish, says that everyone in a yoga class has a back story, many of them involving chronic illness or mental health issues, but my reasons for starting were much simpler; I couldn’t stand on one leg.

I’d joined the gym and one of the staff was studying to be a personal trainer. She asked if I’d like a free fitness assessment. When she tried to check my balance I was shocked to discover that I couldn’t keep one foot off the ground for longer than a few seconds. She told me that loss of balance is common as we age and one of the reasons elderly people have so many falls. I was in my late 40’s and hardly geriatric. She recommended yoga.

I’d been diagnosed with fibromyalgia many years before. It’s a chronic pain condition that feels a lot like that ache you get when the flu is about to hit you, or, ironically, like the ache you get if you overdo it at the gym. When I explained this to Emma, the resident yoga teacher, she told me to find my ‘intelligent edge’, not to hurt myself, to practice non-violence towards myself. I spent about half the class in a position called ‘pose of a child’.

But I kept going.

Thoughts of broken hips and walking frames motivated me. For the first month or so I felt like this:

funny-cartoon-fist-time-yoga

I love this cartoon. I think it sums up beautifully the reasons why a lot of people give up on yoga. It can be intimidating to be in a room full of people that seem to be able to bend themselves like pretzels. Then there’s the weird Indian names for positions and the weird Indian music. Although I did very quickly come to find the music surprisingly relaxing. My friend, Dayasaga Saraswati (yes, she teaches yoga) tells me that the Indian view of music is spiritual and that they believe it can resonate with us at a subconscious level to promote good health. I’ve come to believe they are definitely onto something.

After about two months I finally made it through a class without having to rest or stop and look at the teacher every fifteen seconds. I felt a small sense of triumph and then remembered that a yoga class is no place for ego. Emma often says ‘Honour the body that you’re in today. It’s a different body to yesterday. You’ll have a different body tomorrow.”

After about three months I found myself really looking forward to Thursday morning yoga classes. I had my own favourite spot on the floor. I was on smiling and nodding terms with a lot of the other regulars. Best of all, I could now stand on one leg. I could also stand on one leg, hold the foot of the other leg with my hand, make a mudra with my other hand and bow forwards in a dancer pose. My body felt energised after classes. Without thinking about it, I naturally started to eat better and to appreciate my body. I could now bend and balance in ways that I didn’t think would ever be possible.

I also noticed that I’d stopped worrying about how I looked or what anyone else in the room was doing. My mat had become a kind of magic carpet. When I stepped onto it I was fully present. When my mind started to drift I would gently pull it back onto the mat. I felt as if I had moved back into my own body. I started noticing that this state of mindfulness stayed with me after class. I would find myself fascinated by mundane tasks and deeply appreciative of special moments. I spent a lot more time in the present and a lot less reflecting on the past or planning for the future. Yoga had done this:

1012917_376785655793678_2351014497507997693_n

One day in class, Emma made a comment about incorporating something into home practice. Home practice? You mean one class a week wasn’t all the yoga I needed? Emma and Dayasagar both told me that even five or ten minutes of yoga a day could be life changing. At the time I thought it was highly unlikely that such a small investment of time could have such impressive returns, but I figured it would probably help me to manage my fibromyalgia pain and to stay fit and flexible.

Starting home practice was just like starting class. I was back to feeling awkward and self conscious all over again. I’d do half a dozen cat stretches and then wonder what to do next. I decided to build my home practice a bit like the way we used to learn dances at school. Start at the beginning and just keep adding bits on. I eventually settled into a steady practice that included plenty of different poses. I tended to stick with this basic pattern, occasionally adding in something from that week’s class.

Over time my morning yoga became as essential to my day as my morning shower. I figured out how to pack an old yoga mat into luggage when I travelled. Friends booked a weekend away and kindly made sure there would be somewhere for me to practice.

I realised that yoga had become an essential part of my life. I was feeling fitter, stronger and happier than I could ever remember feeling. My fibromyalgia didn’t vanish, but I was in less pain less often and I could modify class according to how I was feeling. On one occasion when I’d had a serious relapse I turned up at class and burst into tears. “I’m right back where I started!” I told Emma. “It’s okay,” she told me. “You’ve been here before and overcome it. Just honour the body you have today.” To our mutual surprise I managed a whole class. Yoga had conquered fibromyalgia.

Then I was diagnosed with cancer.

My first class after diagnosis was difficult. I knew I’d cry when I saw Emma. I knew I’d be in that uncomfortable position where some people in the room knew something incredibly personal about me while most had no idea. I wondered if I’d be better off giving up class. By the end of that class I knew I had to keep coming. I still had cancer but the fear and horror of my diagnosis had settled. I felt calm. Ready. This is the body I have today and it has cancer. But I’m still here. I also knew that I had to practice non violence towards my own body. I would not bully myself or beat myself up over my cancer diagnosis. I accepted the reality. I resolved to breathe into my diagnosis, to make room for it and to accept it.

When my hair fell out the whole room could see what was going on. People that had smiled and nodded all those years started to talk to me, to ask how I was going, to tell me they thought I was brave or inspirational. As chemotherapy progressed I considered giving up class, concerned that I might pick up a cold. Most people don’t know that a head cold can kill you when you’re going through chemotherapy. Instead I chose to bring a can of disinfectant spray and to use that to create my own little decontamination zone. Friends knew not to kiss or hug me. Class went on. I went back to spending half of it in pose of a child because of the fatigue but I always came away calmer, stronger and feeling at peace. Yoga was a weekly reminder that my chemo ravaged body wasn’t permanent. I would come through this.

Home practice was one of the most beneficial things for dealing with chemotherapy. I would roll out my mat and start with cat stretches. I would immediately feel my energy start to rise and my distress start to dissipate. Some days I would feel to sick or tired and my husband would remind me, “The days you least feel like yoga are the days you most need yoga.” So true.

In the middle of chemotherapy I developed a fever and nearly wound up in hospital with neutropenia. I dodged that bullet but had to miss two weeks of classes. Emma kept in touch via Facebook. Home practice became more important than ever.

Following my first surgery the Breastcare Nurses commented on my extraordinary range of arm movement. I’d had a slice taken out of my breast and a string of lymph nodes removed and I could put my hands into reverse prayer position behind my back. When they showed me the physiotherapy exercises and advised that I work up to them slowly I demonstrated my ability to do all of them and asked when I could get back to class. Three weeks later with the wound carefully taped I was back doing a modified version with Emma’s support and advice. Five weeks later I was back doing a full class. That’s what yoga can do for you.

When the radiation clinic asked me what time would suit me for my six weeks of daily zaps I made sure they didn’t clash with yoga class. My husband was so impressed with what yoga had done for me that he started going to a Monday night class and I went with him as often as possible. After radiation I missed two weeks while my skin became raw but as soon as possible I was back on my mat.

When I got the news in July this year that the cancer had come back and I would need a mastectomy it was yoga that helped me more than anything else. Practice non-violence with my own body and accept what is. This is not the body I will have a month from now because that body won’t have breasts. But it will still be my body.

When I was offered reconstruction one of the critical factors for me was my return to yoga. With reconstruction, my surgeon thought I would probably need to stop all yoga for at least three months and as long as six months, depending on how well I healed. Without reconstruction I could probably be back at class in about six weeks. This is the point at which I really understood how essential my yoga practice had become to me. The thought of not being able to do yoga for six months was distressing.

I realised that yoga, for me, had become so much more than standing on one leg. I had become calmer, kinder, less judgemental. I had noticed improvements in my balance, flexibility and posture, which you would expect but there were also subtle and unexpected consequences. I realised that part of the legacy of my policing career was a tendency to hold my breath, or to breathe in a very shallow way. If you’re doing a warehouse search for an armed offender this is a good skill to have but to do it on a regular basis starves your body of oxygen. There’s a reason yoga instructors include advice about inhaling and exhaling. My sleep improved. My mood improved. I was healthier and happier, even while I had cancer.

Following the double mastectomy in August this year I was still able to put my hands into reverse prayer to the amazement of the nursing staff. One of the old, wise nurses said, “We get two kinds of mastectomy patients. Those that do yoga and those that don’t.” While other patients lay in their beds and watched television I started walking laps of the ward. Forbidden yoga for a couple of weeks I still felt the need for some kind of exercise.

I returned to a modified daily practice as soon as I was released from hospital, nine days after surgery. My doctor cleared me for class after three weeks. I’ve been back ever since.

I am certain that yoga, and Emma’s class in particular, has made an enormous contribution to my acceptance of life without breasts. This is my body and I love it. I am strong, flexible and grounded. Thanks to yoga I also have pretty good legs for a woman in her 50s! I haven’t felt the need for prosthetics and part of that is the complete acceptance of my new body.

One of my yoga friends, Jan, is naturally flat chested. Before my surgery she told me we’d be flat mates. What a wonderful thing to say. Funny that I’d never even noticed she was flat chested until she pointed it out, and that was a reassuring thought too.

There are no words to fully describe what yoga has done for me. Some of it is beyond language. It is deeper. It’s like trying to describe great music, or love, or the colour blue. Sometimes you just have to experience something for yourself. When it comes to explaining yoga, words are like a documentary about Australia. The documentary can show you images of the country but that’s nothing like travelling here, meeting the people and seeing the land. Yoga is the same. If you do it, and keep doing it for long enough, then you understand.

Yesterday I managed a yoga move I’d never done before. It’s difficult. It’s a side plank, which requires me to support my body weight with one arm, followed by a move where I put the top leg behind me and arch my back. I was momentarily pleased with myself and then I remembered that yoga class is no place for my ego. That was yesterday’s body. Cancer has taught me that anything could happen. My body might be very different next week. Even so, I can now say that for the moment, I am officially fitter than I was before the mastectomy. I am also able to support my body weight on either arm. Please think about that for a minute.

I keep trying to thank Emma. She pushes back. “It’s not me. It’s the yoga.” Yes, it is the yoga and it’s also having a teacher that creates a safe space, where I can be weak and ill and full of pain and still welcome. It’s about weaving the philosophy of yoga into each class so that it gently shifts my own thinking. It’s about being a living example of everything she teaches, including humility, which I suppose is why she doesn’t accept any credit.

So this post is for you, Emma. It’s my way of attempting to express the profound impact your classes have had on my life. Thank you. My cancer treatment would have been so much harder without yoga. My life would be so much poorer without yoga and all it has given me. Namaste. You have my deep gratitude and sincere love.

And for everyone else, please consider trying yoga. Not just one class, which I promise will leave you feeling awkward and embarrassed, but try it for a few months. You might just find that it opens up a treasure chest of benefits and even if it doesn’t, at least you’ll be able to stand on one leg.

 

 

 

 

Here, Try My Shoes.

1798177_10153839604620693_845105952_n

This blog contains a lot of advice about coping with the treatment for cancer and living well after treatment. I often think that offering people advice is a bit like offering them your shoes. Someone tells you they need to walk from here to there (and sometimes they don’t even do that) and you say, “Here, try my shoes.” The problem is obvious. There’s a fair chance that my shoes won’t fit you. Even if they fit you, they might not be comfortable. Advice is a bit like that too.

When I consider whether or not to take someone’s advice it’s like deciding to try on their shoes. This is not a simple decision. From my perspective there are some shoes I know will never be comfortable. I am not, for example, going to try leech therapy to prevent cancer.

There are some shoes that look like they’ll fit me but don’t. For me this happened with radiation therapy. I did my research, heard all about the statistics, endured the embarrassment of having my breasts exposed to strangers day after day and the discomfort of skin damage and then my cancer came back anyway. Conclusion? The radiation did not ‘mop up’ any potentially cancerous cells as promised and I now have permanently weakened tissue and the risks that come with radiation treatment, including future heart trouble, leukaemia, and aggressive mutations to the cancer I’ve already had. Of course the cancer would almost certainly have come back without the radiation and then I would have kicked myself for not having it.

There are some shoes that look like I won’t like them but turn out to be brilliant. Recently I saw a television program about fasting and the research into its benefits. I’m someone whose previously dismissed fasting as too extreme, too radical and too much stress on my body. I was wrong. It turns out that fasting can trigger your body to clean up damaged cells and to improve your production of T cells, critical for a healthy immune system. This is important news for anyone trying to avoid cancer. Research has shown that all of us have potentially cancerous cells circulating the body all of the time. In those of us that develop tumour based cancer these cells have managed to trick the body into providing a blood supply so that the cells can multiply into tumours. Something that helps the body to clean up damaged cells is highly likely to help prevent the recurrence of cancer. I’m excited.

Most importantly, research into fasting has shown that it reduces the PKA Enzyme. Higher than average levels of this enzyme are present in people with cancer and it’s been linked to cell progression and tumour formation. As a side benefit, it’s also linked to ageing (not that I care any more, ever again, how old I look!).

Last week I fasted for two days. There’s a popular diet around at them moment that’s variously called ‘The Fast Diet’ or ‘The 5:2 diet” and the program I saw included an interview with Michael Mosely, one of the people that developed this concept. I really think they should call it a ‘calorie reduction’ diet rather than fasting, because it involves eating 500 calories on two days each week. That’s not the same thing as fasting. I tried 5:2 but for me it was more difficult than just eating nothing for two days. Eating something made me mildly obsessive about what I could include in my 500 calories. Eating nothing gave me a complete break from eating, preparing and thinking about food.

Over the course of the two days I drank plenty of water. On the first day I had two black coffees in the morning but I left these out on the second day. As a consequence I had a mild ‘where’s my caffeine’ headache on day two but otherwise I felt fine. I kept myself busy and distracted. I thought a lot less about food than I expected and while I did have moments of feeling like I wanted to eat I found they passed quickly if I just turned my attention to something else. In my mind, it sounded like this:

“Hmm. I feel like something to eat. Maybe an apple or some peanut butter on toast. Oh wait. I’m fasting. I’ll have a drink of water and find something to keep me busy.”

Interestingly, my hunger did not increase over the course of the two days. I did not become ravenous or distressed about the lack of food. It seemed that once my hunger reached it’s very mild peak it just stayed there and only invaded my thoughts intermittently. I was surprised at how easy I found it to go without food.

The proponents of fasting claim that it improves our cognitive function. They speculate that our ancestors, during times of hunger, would have needed to be more creative problem solvers to find food and so the absence of food improves our thinking. I managed to figure out a complex problem with a broken sliding door, to remove the door, repair it and replace it so there might be something in that.

I was hoping that fasting might have had an impact on my pain levels. I’ve still got nerve pain, particularly in my hands, as a consequence of chemotherapy. I’ve also got lower back pain, possibly from degenerative arthritis in my SI joint or another hang over from chemotherapy. Fasting didn’t seem to make much difference but I remembered my TENS machine and found it made a huge difference to my lower back pain. More creative problem solving, perhaps.

The most noticeable impact was on the duration and severity of my hot flushes. Chemotherapy induced menopause. Post surgically my hot flushes have ramped up again. I don’t find them particularly distressing because I certainly prefer them to menstruating and they mostly just involve the same feeling I get when I walk into summer sunshine. There’s a bit of a glow across the forehead and a down-to-the-bones warmth but I don’t have the panic that affects some women. For the whole two days of fasting I had two very mild events instead of six or so much stronger ones. Conclusion: If you struggle with hot flushes it might be worth trying a short fast. Of course, what works for me might not work for you. These are my shoes.

Meanwhile Graham’s trying the 5:2 diet and loving it.

If you’re interested in 5:2 there’s more information here:

http://thefastdiet.co.uk

Here’s a couple of interesting articles about fasting, one of them with good research references:

http://www.collective-evolution.com/2014/06/22/scientists-discover-that-fasting-triggers-stem-cell-regeneration-fights-cancer/

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

You might also like to google for more research into fasting.

If you’re about to start chemotherapy then you might want to talk to your doctor about fasting. Here’s just one of the pieces of research showing the potential for fasting either prior to or after chemotherapy to reduce some of the unwanted side effects. It’s also possible that fasting might improve the efficacy of chemotherapy which of course means that it might not, but so far it appears not to have any negative impact on chemotherapy and would, on that basis, be worth trying, particularly for those people plagued by extreme nausea.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2815756/

But back to footwear. Sometimes, particularly in relation to cancer, I find myself being invited to wear the shoes of someone that’s losing their fight. I can understand anyone’s desire to share information and advice in the hope of helping other people. It’s the reason I blog. I also think the first rule of taking advice is to consider the situation of the person offering it. I would not, for example, take investment advice from someone that doesn’t invest, or health advice from someone who is unhealthy.

There’s a number of popular cancer related sources, including Facebook pages, blogs, web sites and web magazines that include some often radical advice from people with cancer. I’m sure it’s well meaning but when the author is advocating expensive and radical treatments that have failed to cure their cancer I’m going to be skeptical.

I’ve had quite a few people recommend Anna Kitson’s site at http://savingana.com

She also has a Facebook page.

Anna is now a regular contributor to Mamma Mia where she’s promoted as someone writing about what it’s like to die from stage four breast cancer.

Her site offers several pairs of very expensive and unusual looking shoes. Her recommendations include travelling to clinics (Kliniks) in Germany for treatment, taking expensive supplements, using hypothermia, sticking to a ketogenic diet, taking cannabis oil and considering some of the more radical alternative treatments. It’s possible that this advice is the reason she’s still alive eleven years after her diagnosis. Sadly, it’s also possible that none of it has made any difference to her health, although it’s surely had an impact on her bank balance.

It’s reasonable that she want you to walk a mile in her shoes, but keep in mind where those feet are headed.

I don’t have an easy formula for determining which advice to take and which to reject. ‘Trust your instincts’ is popular but terrible advice in my opinion. My instincts have often led me down darkened alleys to be beaten up by foreseeable consequences. I have distressingly seen ‘instincts’ cause people to reject mainstream medicine and to die cursing the alternative medicine practitioners. I’ve also seen some (but only a few) cases where rejecting mainstream medicine and implementing alternative methods resulted in a return to good health. The trouble with advising people to trust their instincts is that it invariably comes from people who, with the wisdom of hindsight, made a good choice. They seem to conveniently forget all of those times when their instincts helped them to make really bad decisions.

‘Trust science’ is also problematic because while I continue to be a fan of the double blind trial I keep three things in mind; firstly, a lot of research is funded by vested interests and there is a long history of this kind of influence having an impact on the integrity of any research; secondly, funding for research is limited and the ways that subjects are selected for research are often arbitrary which means a lot of potentially promising and beneficial treatments may not have research to support them; and thirdly, science is always evolving and changing which is both wonderful and frustrating. There’s no doubt that elements of the best possible cancer treatment you can get today will be obsolete at some time in the future, in some cases within a year.

Recently I’ve been researching diets in the hope of finding the best possible eating plan for avoiding recurrence. It’s interesting how many ‘sacred cows’ are being barbecued by the evidence. Low fat diets are bad for you, eggs will not raise your cholesterol and even lard (yes lard!) and butter might be new health foods!

When we look back at medical practices of a century ago, or even a decade ago, we can find much to criticise. This will be just as true of ‘modern medicine’ in a decades time, or with the wisdom that will come from a century of improvement. We don’t yet have a cure for cancer. A lot of the best available treatment comes with serious risks and side effects. Would you like bare feet or stilettoes to cross that fire pit?

I’ll keep learning and researching and sharing what I find. It’s likely that I’ll change shoes several times over the next year or so as I figure out what works for me. My aim is to prevent my cancer coming back. All advice comes with this caveat: We won’t know if any of my advice is worth taking for at least five years. It’s also worth remembering that we are all different and complex. What works for me might not work for you.

And as a final caution, I’m always very suspicious of anyone trying to sell me their shoes. It’s relatively easy to set up an impressive looking web site with what appears to be ‘scientific research’ and to market some new wonder product to cancer patients. There are possibly some well meaning people that are over-enthusiastic about something that shows potential and there are definitely plenty of people prepared to exploit anyone desperate for any hope of a cure. It’s always useful to ask ‘Who gains if I take this advice?’ particularly when large sums of money are involved.

Ultimately I’ll resort to gathering my own evidence, being open to what seems instinctively to be counter-intuitive, being prepared to learn and to change my mind and recognising that at some point, failing to make a decision could have worse consequences than choosing any of the reasonable options available to me.

So please, if you’d like to do so, try my shoes. But feel free to take them off again if they’re the least bit uncomfortable, and feel free to reject them completely if you can tell just by looking at them that they’re not for you.

 

My Last Post, Gabapentin and the Bleeding Edge

A few things have happened since my last post.

Firstly, my friend, Shelly, contacted me to make sure I was okay. Something about the post worried her. She thought it sounded like I’d given up while at the same time being sure that I never would.

Then a couple of days ago I made this comment to my husband:

“You know, I can understand why people with cancer decide to suicide, even when they haven’t reached the point where they are terminal. I used to see cases like this when I was a cop and it always confused me. Why give up when there was still hope? Now I understand. It’s about control. It’s a way to avoid this endless uncertainty and the potential cycle into a long, slow death. It’s a way of beating the cancer because you can decide when you’re going to die rather than letting cancer do that……..not that I’m thinking about suicide. Not yet. But I might in the future. I never understood all of this before now.”

Wait. Did I just say ‘suicide’?

When I was a police officer working in child protection I sometimes used to speak to groups of parents about their teenagers. One of the pieces of advice I gave them was to always treat any conversation about suicide as a flag, even if that conversation was hypothetical or third person. Conversations that seemed to accept suicide as reasonable should ring alarm bells. Further investigation, probably with the help of a psychologist, was the best course of action.

So some part of my brain raised a tiny flag. Shelly’s comment prompted me to take a moment for self analysis. I knew I hadn’t given up but something was definitely going on. I had burst into tears when I went for a massage. I had left there and gone over to my Mum’s place and had another good cry. I wanted to put this down to some kind of natural grief process. It would be reasonable after everything I’ve been through. I’ve been practicing ‘Acceptance Commitment Therapy’ techniques and making room for the sadness rather than fighting against it, which would have been my habit previously.

My brother came to visit with his wife and adorable son. I found myself hoping that he wouldn’t say, “How are you?” because I would have burst into tears. He didn’t. The minute they’d left I wanted him to come back and ask me. I put it down to just feeling blue but when I ran my own personal audit I realised that something was off.

You might recall that my surgeon recently prescribed gabapentin for my nerve pain and peripheral neuropathy. This seemed to be effective when I was in hospital. She prescribed a lower dose and it really didn’t seem to be making any difference. I googled it. This is part of what I found:

In 2009 the U.S. Food and Drug Administration issued a warning of an increased risk of depression and suicidal thoughts and behaviors in patients taking gabapentin, along with other anticonvulsant drugs modifying the packaging insert to reflect this. A 2010 meta analysis confirmed the increased risk of suicide associated with gabapentin use.

So first of all, what packet insert? The packet I have says “Take as directed by a physician” and the pharmacist issuing it said, “Do you have any questions?”  That’s the sum total of the information I received. I wasn’t worried because I’d already had the drug while I was in hospital without any adverse reaction. Of course I was simultaneously off my dial on pain medication.

When I saw my surgeon today and told her about his side effect she replied that I’m the first patient she’s ever had with that kind of reaction. I wonder. Maybe I’m just the first relentlessly optimistic patient for whom any hint of suicidal thoughts raises an alarm.

I stopped taking it yesterday. The sun came up this morning. My black mood lifted. I am myself again.

I wanted to write this post as a warning to anyone else on gabapentin, or anyone caring for someone taking it. Monitor your mood carefully. ANY thoughts about suicide, even hypothetical or third person thoughts about suicide, should be taken VERY seriously. Talk to your doctor.

The other thing that’s happened in the last few days is that a number of people have brought this story to my attention:

http://medicalxpress.com/news/2014-09-breast-cancer-specialist-advance-treatment.html

In summary, it’s about the success of stage three trials in the USA where they’ve added new medications to the chemotherapy for women with triple negative breast cancer and greatly increased the number of women achieving a full pathological response. A full pathological response means complete tumour death prior to surgery and it means that your survival odds improve dramatically, your risk of recurrence decreases and so does your risk of metastatic disease.

I didn’t get a full pathological response.

It looked like I might, but I didn’t.

If you read my last post you’ll probably recall that I spoke about the ‘bleeding edge’ of cancer research. It’s possible that if I was diagnosed this year instead of last year I would have been offered this treatment. That makes me sad.

It gets worse.

Because I’m the kind of person that researches everything I was aware of this research when I started chemotherapy. I took a copy of a report on it to my oncologist the second time I saw her. I wanted to know if it would be possible for me to have these drugs added to my chemotherapy because the early trials had been so promising. It wasn’t.

This is what it’s like to have cancer, to survive cancer and to face the future risk of cancer coming back. Timing can be everything. Location matters too. Most of the research into triple negative breast cancer is happening in the USA and the UK. That makes me sad too.

But what it doesn’t make me is suicidal!

 

A Year in my Garden

The cancer came.

I sat in the garden and cried into the asparagus, wondering if I would live to eat the tender spears.

Through chemotherapy the garden offered up ginger for nausea and watercress for soup. I had no energy. I resorted to weed killer, leaving the garden bald and barren.

When the fever came I rode it, hoping it wouldn’t become life threatening neutropenia. There was too much rain and the garden became waterlogged. I sweated. The fever broke. Three of my four tumours were gone.

Before surgery I hurt my elbow when, with a sudden rush of adrenaline fuelled energy, I pruned the apple trees and set aside the wood for smoking. After surgery the rain kept coming all through summer and the garden became wild and overgrown. I looked at the vegetable garden and remembered that chick weed is good for healing.

I started daily radiation therapy for six weeds. There was no time for the garden. No energy for the garden. I fought fatigue to dig the miracle of untended potatoes and to harvest joyful mandarins. The brush turkeys dug holes in the lawn. The wallaby ate the day lilies.

Slowly I recovered. I felt a little stronger as autumn arrived and the claret ash turned the same shade as my irradiated skin. I made soup from Jerusalem artichokes and fed scraps to the worm farm. I shared tamarillos grown from seed beside the compost bin. I made jam. I harvested pumpkins and put them on the corrugated roof to sweeten. The pumpkins rotted out from the base and I fed them to the worms.

My one year scans showed something unexpected. Probably fat necrosis said my surgeon, or dead cancer. Maybe something in-situ. Nothing to worry about. Take another slice like the magic pudding and all will be well.

I wondered if this scar would be as good as the last one. I tried to do some mulching but I was sill too tired. I went to the nursery and wasted money on plants that died. I surrendered. I organised for someone else to come and help. I went for surgery. This would be the end. All would be well.

The pathology said the cancer was back. The doctor said mastectomy. I sat in the garden and cried. The garden cried with me. Both of us, poisoned, flooded, burned, pruned and neglected. Both of us desperate to live.

I woke up without my breasts in a room without plants. I opened the shutters to look at the sky and the trees. A crow came every day to sit on a TV antennae outside my window, broadcasting a message I didn’t understand. The pathology came back. I was cancer free.

After eight days of care I go home tomorrow. There is a storm outside. The wettest day all year. The wind will rip through my garden. When it stops I will go outside and start rebuilding. I will put my feet in the soil. The magnolia blossoms will be destroyed. The daffodils will be ruined.

It doesn’t matter.

I can enjoy them next year.

Not All Cancer is Pink

I’m in an oncology ward.

You would think this would have occurred to me some time before five days but it really did take that long for me to figure out that everyone here is being treated for cancer.

About half the rooms have signs on the door reminding everyone that enters to clean their hands. A few have gloves and aprons that need to be worn by everyone, including the nursing staff.

There are trolleys in the hallway stocked with purple disposal containers and purple gloves and disposable coveralls. I remember these from chemotherapy. There is equipment for dealing with toxic spills and a room full of mobility aids.

The barrier nursing is not to protect us from getting cancer. It’s to protect people with compromised immune systems from catching anything from us. A head cold can kill you when you’re being treated with chemotherapy.

The ward seems to be about half full of women and half full of men. Some are old. Most are not.

One of the other women has the same surgeon as me. She cheerfully told me she was in the waiting room the day I found out I needed a mastectomy and rang my daughter using the receptionist’s phone to ask her to come home for the night. I can tell by the presence of Zonta pillows that there are at least two other women being treated for breast cancer.

While I’ve been here I’ve had to ask my husband to buy me some zip fronted jackets. I’m wearing track suits and don’t have enough tops to go with my bottoms. I usually pull something on over my head. That’s not a good idea at the moment.

Graham did a great job on his first ever solo expedition in search of women’s clothing. I was showing one of the nurses and commented that I really loved the fushia coloured one, more so because it wasn’t ‘breast cancer pink’. I’m a bit over it. When I let my hair stay it’s natural grey I added lots of pink to my wardrobe. It looks great with grey hair. Since my diagnosis it looks like I’m making some kind of statement when I wear it. I’m not. My friends know I have cancer. They don’t need a reminder and I’d prefer not to be the obvious cancer patient in the room.

The nurse commented that last year they decorated the ward and the cafeteria and the garden with so much pink it hurt the eyes. One of the patients said, “It’s great, but I have bowel cancer. Are you going to have a brown ribbon day?”

A few weeks ago I got a message from a man in the USA whose wife is one of the rare survivors of mesothelioma. He asked me to blog about his wife’s cancer. Here’s part of his email to me:

“I am reaching out to you today to ask for your help by participating in a campaign we are running to spread awareness about mesothelioma – a cancer caused only by asbestos exposure. Mesothelioma is an entirely preventable cancer and hopefully with your help, we can potentially save lives! Heather and I have been so lucky to meet some incredible bloggers who have helped us in our journey to spread awareness and I was wondering if you would be willing to do the same!”

I was touched to be asked. I don’t suppose this blog would reach more than about a hundred people. It’s mostly been a way for me to get things off my chest (just realised how funny THAT phrase has become!) and to share how I’m feeling with friends and family. I don’t imaging that warning people about asbestos related cancer through this forum will have very much of an impact. But I promised to do it anyway.

Cameron and Heather were hoping I’d be able to join their July campaign to spread the word. Suddenly my world got turned upside down and I was scheduled for a mastectomy. It’s now the 14th of August.

Breast cancer is the second leading cause of death for women in Australia. It deserves to be well funded, well resourced and well researched. I have great admiration for all of the pink charities and the wonderful people that run and support them.

But not all cancer is pink.

Cameron didn’t tell me how Heather contracted mesothelioma. She must have come into contact with asbestos fibres some time during her life. It could have been that she lived in a fibro house that hadn’t been well maintained, or maybe she played somewhere that building products had been dumped. I might be that she was unlucky enough to have picked it up from working in a building where the asbestos ceiling was slowly degrading or perhaps she was a victim of secondary contamination, handling clothing or equipment that had been in contact with asbestos. Frighteningly, she might have come into contact with worn or damaged asbestos while she was at school.

It would be very difficult to pin point Heather’s cause. Her contact might have happened thirty to sixty years prior to her diagnosis. It might have been misdiagnosed as a chest infection. It might have been ignored because it’s usually men that get this disease; they are four times more likely than women to be diagnosed.

Unless of course, Heather is a veteran. USA veterans are at the greatest risk of Mesothelioma. Cameron didn’t tell me why. It makes me sad to think of all those men and women sent off to war that are now being diagnosed with this usually deadly cancer. Most people diagnosed have only 10 months to live.

There are worse things than breast cancer.

Breast cancer is a good cancer to have. Okay, that’s not right. No cancer is ‘good to have’ but some have better survival rates than others. In Australia, breast cancers generally have an 86% survival rate and triple negative has a 75% survival rate. A lot of this is due to the outstanding work done by pink charities and the generosity of the people that support them. Some of this work has been of benefit to people with other kinds of cancer.

I recently got an email from one of the breast cancer research groups asking me if I’d like to participate in some research into the impact of early menopause on women with breast cancer. The one before that was about maintaining marital intimacy.

Really?

Not that both these topics aren’t important to me. They are, but I’m pretty sure when people donated, hosted morning tea, rode a bike, ran a marathon or walked ‘For A Cure’ this wasn’t what they had in mind.

To me there are three priorities when it comes to cancer; treating it, preventing it and curing it. That’s where the money should go.

These days we can use social media to network and support each other. Do we really need to fund a ‘support network’ or could we promote one through Facebook and redirect that money to research. Same goes for sending me a kit to help me on ‘My Journey’. How about an ebook instead?

I can understand why the McGrath family wanted to start a charity to support breast care nurses but it’s possible that this charity is simply allowing governments to avoid the cost of providing positions. I became aware recently that the local, part time breast care nurse at our local hospital, which services a population of 320,000, is likely to be ‘reassigned’ when the McGrath nurse is funded at the end of the year. So a person with nine years experience and a great love of her work will step aside and the government funding for her position will be used to fund something else. Who knows what happens in the future when/if the McGrath funding dries up.

Breast care nurses save money.They spend a lot of time on the phone to people, reassuring them that what they are going through is normal, answering questions and providing advice about other avenues for support. If they weren’t there, people would either suffer in silence and potentially undermine their recovery, or they would go and see a doctor. Both alternatives are expensive to the health system. These positions should be a priority for government funding. Not dependent upon a charity.

It’s daffodil day this week. I’m a long time supporter of the Cancer Council. Their slogan is ‘All Cancers, All The Time’. They also provide information, advocacy and networking. They also fund research.

If you were an Australian with mesothelioma this would probably be your first port of call. They would have information about the disease and would be able to put you in touch with any local support groups. They’d give you free phone counselling and advice about everything from managing your condition to handling your finances. If Cameron and Heather were here instead of in the USA they wouldn’t need to spend their very precious time asking bloggers to spread the word.

This daffodil day I’ll be wearing a daffodil for my Dad.

He died of bladder cancer at 58.

Maybe I should launch yellow ribbon day.

PS: If you need more information about mesothelioma here’s a couple of good websites:
http://www.mesothelioma.com/ A general site from the USA that includes some frightening information about Australia.
http://www.mesothelioma.com/veterans The USA veterans’ site.
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Mesothelioma An Australian site from the Victorian Government

No More Mouth Ulcers: No Excuses

 

Mouth ulcers are a possible side effect from chemotherapy. I’ve come up with some strategies for avoiding them as much as possible, and for treating them quickly when they happen. It’s important because pain in your mouth goes straight to your mood. Mouth pain affects our ability to eat and to communicate, and struggling to do either has serious implications for how well we feel.

Eating well is one of the few things we can control during chemotherapy, and has the potential to help us feel positive about the extent to which we’re supporting our amazing bodies in the fight against cancer. Mouth ulcers undermine that.

With some good habits and a bit of vigilance it’s possible to get through chemotherapy without suffering from weeks of mouth ulcers. This routine will also help you to avoid oral thrush:

DURING CHEMOTHERAPY

  • Drink water. Yes, you will need to roll your stand to the loo a couple of times but the water will help to reduce the impact of the chemicals on your mouth.
  • Suck the ice. For some types of chemotherapy (e.g.: FEC) they’ll offer you ice to suck during treatment. Keeping your mouth cool reduces the blood circulation and therefore the impact of the chemicals on your mouth lining. Keep putting a little ice in your mouth throughout treatment and you’ll reduce the risk of ulcers.
  • Take some ice with you when you leave and keep putting it in your mouth for about half an hour after treatment.

AT HOME

  • Drink water. Water is your body’s natural lubricant and much better for you than any other kind of drink. In particular, avoid sweet drinks like soda and fruit juice, or if you do drink them, have water afterwards. While it is possible to have too much of anything you can safely drink around two litres of water every day. This will also help to minimise the impact of your drugs on your liver. Make a point of drinking water as soon as possible after you’ve eaten anything, particularly anything sweet.
  • Switch toothpaste. Strong, minty toothpaste usually contains something to make your mouth slightly numb. This increases the risk of you scratching your gums and providing a starting point for mouth ulcers. I really like the Grants brand:
    http://www.ausnaturalcare.com.au/grants-of-australia-mineral-herbal-toothpaste-with-aloe-vera-110g gclid=CLG57ceV_LoCFcHwpAodojIAAg
    It’s aluminium and fluoride free and contains aloe vera, so it’s very soothing on your mouth. I’ve also found that switching to this brand solved my problems with reflux and heartburn. It turns out that the strong peppermint in a lot of commercial toothpastes is an irritant.
  • Get a new toothbrush: Only use a soft toothbrush. I’ve seen children’s brushes recommended but they’re so small you’ll spend half the day cleaning your teeth. I find that a good, soft, adult brush is just as good. There’s an OralB brush that has rubber bristles on the outside of the nylon bristles and I find this protects my gums from being scratched. I’ve recently found some bamboo toothbrushes and I’m switching to those because I like to avoid plastic as much as possible. They’re really soft, do a much better job of cleaning my teeth and last for around three months.  I bought them here:
    http://www.newint.com.au/shop/body-care.htm
  • Change your brushing technique. We all know that if we want to clean something we can use more effort for less time, or less effort if we take our time. The main aim during chemotherapy is to avoid scratching or cutting the gums, so going gently and cleaning for longer makes sense.
  • Brush your tongue and the roof of your mouth. Just like your teeth, these parts of your mouth will accumulate plaque and bacteria. Brush them gently and if your toothbrush comes with a tongue cleaner (usually a bumpy bit on the back of the head) then get into the habit of using it.
  • Floss gently, but only if you already floss. If you’re a regular flosser your gums will be used to it, but go carefully. If you’re not in the habit of flossing now is not the time to start. It’s likely you’ll make your gums bleed.
  • Rinse thoroughly. When you’re done brushing, rinse your mouth a couple of times with water and spit the water out. This is particularly important if you decide to stick with one of those popular, minty toothpastes. Check the label. You really shouldn’t be swallowing this stuff.
  • Choose your mouthwash carefully and use it after every meal. Alcohol based mouthwashes like Listerine can actually cause mouth ulcers. Try a good sized pinch of bicarb or salt in water but be careful not to overdo it. Too much bicarb can promote thrush. I’ve seen a lot of places recommending a whole teaspoon of bicarb. I think that’s too much. As an alternative you could try Biotene mouthwash. It’s designed for people that suffer with a dry mouth and my oncologist recommended it. It doesn’t contain alcohol and leaves your mouth feeling fresh without the explosive hit of an alcohol based mouth wash. They also make a spray that you can carry with you for times when you’re eating out and won’t be able to get to some bicarb.
    http://www.biotene.com.au/?mid=bioteneAU:Search1&gclid=CIyDmKWY_LoCFY1fpQod5TkAmA
    My own routine is to use a pinch of bicarb in water after meals and then the Biotene at night before I go to bed.
  • Pull coconut oil. Buy some organic coconut oil (also sold as coconut butter) and put about a tablespoon full in your mouth. Don’t worry if it’s solid because it will melt. Pull the oil back and forth between your teeth and swish it around your mouth for around five minutes. Spit out the oil. Coconut oil is naturally anti-fungal and this routine will help you to avoid thrush as well as conditioning your gums. Some people do this every day and if you’re particularly prone to ulcers or have active ulcers then daily is a good idea. If you’re just doing it for prevention then once or twice a week is fine. As a general guide, if your gums feel a bit raw or ‘furry’ when you run your tongue over them, then pulling coconut oil is a good idea. Pulling oil will also help to keep your teeth white and will provide a gently flossing action between your teeth. Brilliant! In Indian Ayurvedic medicine, they believe that pulling oil removes toxins from your body. I can’t find any proof of this but given all of the other benefits I’d highly recommend you try it. I believe that pulling oil and switching toothpaste are the main reasons I’ve had so few mouth problems.
  • Avoid sugar, chocolate, artificial sweeteners, alcohol and very sweet food. Too much sugar will promote mouth ulcers and thrush. If you’re going to have something sweet then follow it with a long, slow glass of water. If you have active mouth ulcers then skipping the sweet stuff for a few days will help them to heal.
  • Avoid food that’s likely to scratch your gums. I need to be really careful with some cracker biscuits and potato chips. You can still eat crispy food but please be careful.
  • Eat well. Avoid highly processed foods and eat plenty of fresh fruit and vegetables. Your mouth, like the rest of your body, needs good food to be healthy.
  • Avoid anything too hot. It’s easy to burn your mouth at the moment so you might need to let everything cool down a little. I haven’t had a problem with spicy food but I ate a lot of it before I became sick. Pay attention to what irritates your mouth and avoid it.

AT THE FIRST SIGN OF AN ULCER

  • Kenalog Kenalog Kenalog! Kenalog in orabase is THE treatment cream for mouth ulcers. You need to ask the chemist for it. You don’t rub it in. If you can imagine covering the ulcer with a sticky blob of plastic then you’ve got the right idea. It’s best applied at the first sign of an ulcer, no matter what time of day it is, and then reapplied at night after you’ve cleaned your teeth.
  • Diflam Diflam Diflam! Diflam make a range of sugar free lozenges that are anti-inflammatory and antibacterial. Look for a packet that says ‘plus anaesthetic’ because these will numb any pain from mouth ulcers. Carry some with you and pop one in your mouth if you get that tell-tale twinge.
  • More Diflam. Diflam also make a mouth gel that’s handy to carry with you. It’s much easier to apply than Kenalog and is a good stop-gap until you get home and hit the hard stuff. If you’re happy to carry the Kenalog and use that then you won’t need this. Just a note here that I haven’t used the Diflam mouth wash but I notice they also recommend it for mouth ulcers. If anyone has tried it I’d like to know what you thought of it. I’ve spoken to some women that don’t like the taste or the feel of Kenalog and so they put up with ulcers. This cream won’t work as well or as quickly as Kenalog but it’s better than using nothing.
  • Coconut oil. Any day that you have active mouth ulcers, or the twinge that tells you they’re on the way, I would strongly recommend pulling coconut oil. My own experience was that just doing this stopped a lot of ulcers in their tracks. Scroll up for all the details on pulling oil.
  • Check your mouth care routine. Ulcers might be a sign that you’ve gotten a bit slack. You should be rinsing your mouth after every meal using either Biotene or water with salt or carb soda. If you’re eating out then at least have a drink of water after you’ve finished eating. You can also use Biotene mouth spray. Check that your toothbrush is in good condition and replace it if it’s not. Pull some coconut oil at least once a week.
  • Avoid cleaning your teeth straight after eating. Seems odd, I know, but depending on what you’ve eaten the acid in the food will have left your teeth and gums more susceptible to damage. Drink water or use your mouthwash, but wait at least half an hour before you brush.
  • Watch your snacking. It could be that your routine is great with regard to rinsing after meals, but if you’re having a lot of between-meal snacks you’ll be altering your mouth acid. Drink water after a snack, or have water instead of a snack. If you’ve had something very sweet then use mouthwash.

So that’s my ultimate guide to mouth care and avoiding the pain of mouth ulcers. So far I’ve only ever had to put up with an emerging ulcer for around twelve hours before this routine has restored things to normal.

I think what’s really important is to not just accept ulcers as part of your treatment. They will seriously effect your mood, your immune system and your enjoyment of food. If they’re serious they can effect your ability to talk and provide an entry point for serious infection which can lead to neutropenia and an unwelcome stint in hospital on intravenous antibiotics.

At chemotherapy yesterday I met a woman that told me she’s been suffering terribly with mouth ulcers. When I mentioned Kenalog she replied, “Oh, yes, I have some of that but I just haven’t been using it. I suppose we put up with a lot of things that we don’t need to put up with, don’t we?” I don’t understand this. Why would anyone put up with that pain when with a good routine and a bit of vigilance you can live without it? I want my body to be fighting cancer, not mouth ulcers.

The feedback I’ve had from other cancer patients is that my routine has helped them either avoid mouth ulcers, or treat them and prevent their return. The comment I hear most often is that, not unlike a toothache, mouth ulcers are the kind of pain that you put up with and then realise what a huge impact it was having on your life once it’s gone.

1381455_10151806814238172_997787025_n

I hope you have as much success with it. Please let me know.