A Matter of Trust

I’ve been thinking a lot about trust lately. It keeps turning up in conversations. Just a few days ago a friend and I sat on the front verandah and talked about infidelity, and how the real issue is the betrayal of trust.

At the time of my retirement I was the Commander of the NSW Police Fraud Squad. When I took the job on, fraud wasn’t considered a particularly serious crime because the impact on victims compared to crimes of violence was considered negligible. Over time I observed that, in fact, the impact was more severe than many people realised.

When you’re a victim of fraud you’ve been tricked into parting with your money. Really effective fraud offenders will build a relationship with you in order to get access to your money. What I found interesting talking to victims was that the monetary loss was not the worst part of this crime. It was the loss of trust.

When you’ve been betrayed you question your own judgement. You beat yourself up for trusting someone. You retrospectively see all of the signs that something was wrong or you observe that there were no warning signs at all and this makes your mistrust a slow moving cancer that infects all of your relationships.

A friend asked me a couple of months ago for my opinion on her husband. Did I think he was having an affair. How can you ever answer this question? Apart from saying ‘Not with me!’ I had no immediate answer for her. What if I defended him and she later discovered he was having an affair? What if I shared her concerns and unfairly condemned him? I’d been in a similar position myself, a long time ago, when I suspected that a person I was in a relationship with was secretly drinking, even though he’d promised not to. Ultimately I discovered that the depth of his deception went way beyond just breaking that promise. I ended the relationship because I came to understand that if I didn’t trust him I couldn’t possibly say that I loved him. I believe that trust is an essential part of love. I also recognised that real love is unconditional. If you don’t love someone exactly the way they are, if you have a list of changes you want them to make, and if your love is conditional upon those changes then you do not really love that person. You love some mythical version of them that you’ve created in your head.

Lately it’s occurred to me that one of the biggest hurdles for me right now is trust. I’m not worried about my husband. He’s the man that managed to win my trust in spite of the disastrous betrayal of that past relationship. He’s one of the most honest people I know. My trust issues are with my own body.

At the time of my initial diagnosis I would have told you that I was healthier than I’d ever been. I was completely convinced of the physical and emotional benefits of yoga and had started practicing at home every morning. I was eating a largely organic, whole food diet. I was, for the most part, a moderate drinker with occasional over-indulgence at social events, but I hadn’t had a hang over in more than a decade. (This was before I knew that alcohol was a group one carcinogen and as bad for me as cigarettes!) I didn’t take any illegal drugs and was conscious of the need to lose about ten kilos while being frustrated that anything I’d tried so far to actually lose that weight didn’t seem to work. Compared to my friends, I was at least as healthy as most of them and healthier than some of them.

Mentally and emotionally I was in the best place I had ever been. My relationship with my husband was strong and supportive. Like all couples we were not without room for improvement but it was more of a slow refining over time. My daughter had made it through her teenage years with a surprising absence of drama, drugs, alcohol or racing around in cars. We had started to work on our relationship as mutually respectful adults. I loved my home and my life. Things were good.

I got cancer anyway.

It’s part of the reason I get so annoyed at alternative treatment posts that want me to search inside myself for the emotional causes of my cancer. Try as I might I’m unable to locate any ‘repressed anger’ or ’emotional retardation’. I was practicing mindfulness and meditation. I was at peace with my self and in love with my life. I was doing all of the things you would normally recommend to someone seeking to improve their physical, emotional or mental health.

I got cancer anyway.

If you’ve been following this blog since the beginning, you’ll know that I met my diagnosis head on. I embraced the power of positive thinking and creative visualisation. I fine tuned my diet and increased my meditation. My daily yoga became as important to me as my daily shower. The days I least felt like yoga were the days I most needed yoga. I cut my drinking right back to the very occasional glass of wine in a restaurant. I probably drank a total of three bottles of wine in twelve months. I added turmeric and lots more leafy greens and cannabis oil and garlic and turkey tail mushrooms and flax seed to my diet. I made sure that all of the meat I consumed was organic and grass fed.

The cancer came back anyway.

I don’t regret my commitment to positive thinking. It’s made treatment more bearable and it’s made me more pleasant to be around. It’s ensured that through all of the treatment there has still been joy and humour and affection and love. My life has not been ‘on hold’ while I fight cancer. Life is far too precious to put on hold. My life has had to incorporate chemotherapy and radiation and surgery and surgery and surgery. I’ve lived through the fatigue and the hair loss and the bloating and the sometimes overwhelming fear of my early death. I have stayed positive.

The cancer came back anyway.

I’ve tried to emphasise along the way that I don’t think staying positive means excluding all of my other very human emotions. It’s about finding joy where there is legitimate joy and being grateful for what is really there. It’s the sweetness of small moments. My husband’s hand on my bald head, my daughter’s sobbing embrace, my friend’s thoughtful words, the kindness of strangers, all of it wonderful.

I realise that my body and I now have serious trust issues. How could I have been so sick when I seemed so well? When I was initially diagnosed I was pretty healthy. When my recurrence was diagnosed there was general consensus that I’d never looked better. Even then I had lingering doubts about being in the eye of a storm.

Now that I’m out the other side of treatment I need to learn to trust again. My body is slowly recovering. In just the last few days I’ve felt my energy starting to return. I’ve cut right back on any medication. The side effects of the prescribed drugs for nerve pain were worse than the nerve pain. The other pain relievers only have limited impact on my other pain, which could be arthritis or fibromyalgia or bone pain from chemotherapy. I’ve started magnesium supplements and that seems to have helped. Mostly I’m relying upon massage, hot showers and yoga to stay mobile and flexible. Some times I take a couple of panadol but it really only takes the edge off the pain.

My husband jokes that cancer has finally taught me that I am not indestructible. This is true. It’s a good thing to come to terms with. I am kinder to my body and much better at resting when I need to. As a naturally busy person this has taken time.

I suspect that we all float through life with a sense of indestructibility until life serves up something life-threatening. Suddenly we come face to face with our own mortality. Life is finite. We will all die.

This realisation is both terrifying and wonderful. The unimportant slips away. Decisions about what is really important become simple. I know that for some people a cancer diagnosis triggers major life changes as they realise there are aspects of their current situation that don’t fit with who they want to be and what they want to achieve. If you’re lucky, a cancer diagnosis makes you take a long, slow look at your life and allows you to come away with a sense of satisfaction. I am lucky. I have spent large chunks of my life mindfully creating something that brings me joy, pride and deep satisfaction. I appreciate it more because of my new understanding of its fragility.

I miss feeling indestructible. I miss that unshakable trust I had in my own body. I felt as if I was going to live forever.

I wonder if it’s possible to rebuild that trust now that I know the truth.

It’s a bit like people that have been victims of fraud. For a while, they find it difficult to trust anyone. Ultimately, those that recover make a decision to trust in spite of the betrayal.

I think that’s what I need to do. I have to trust my body to do everything it can to prevent the cancer coming back. I have to recognise that my reluctance is normal, human and expected but that the only way back to having a rich and full and meaningful life is just decide to trust. I am eating and sleeping well. I am slowly regaining my strength and my wounds are healing. As my physical range of movement returns I need to recognise that my emotional range also needs to be stretched and expanded. Slowly, slowly.

Trust is always a leap of faith. You can’t monitor another person’s behaviour twenty-four hours a day. You just have to make the decision that they are trustworthy and risk being betrayed. I think that’s where I am now with my body. I need to recover from what feels like a betrayal and learn to trust my own health. Will this prevent the cancer from coming back? I honestly don’t think it will make any difference either way.

In the same way that a lack of trust will doom a relationship with another person, I think a lack of trust in my own body will undermine my recovery. I don’t want to spend the rest of my life waiting for cancer. I don’t want to be thinking that every headache or bone ache or stomach ache is evidence of metastatic disease. I know that fear of recurrence is now going to be a regular visitor but I don’t intend to let it take up residence.

I will trust my body for the same reason that I trust my husband. Because without trust there can be no love, and without love, life is not worth living. I will trust my body in spite of what has happened because even though I’ve had cancer, my body has fought back. I will trust my body again because the alternative is unacceptable. If this was a relationship, I could make a decision to leave it but this is the only body I have.

So I will learn to trust it.

 

 

Advertisements

Two Months Post Mastectomy

WARNING: This post includes photos of my surgical scars. Please skip it if you don’t want to see them.

It’s two months today since I had my bilateral mastectomy. I thought I’d make a record of what’s going on physically and emotionally.

I’m healing well. The small scar from my previous (and now ironically named) breast conserving surgery has finally healed although it still looks a little fragile. The two mastectomy scars have healed well. The one on my right side was the healthy breast and that tissue wasn’t damaged by radiation therapy, so the scar is fine and flat. As you can see in the photo, large breasts mean long scars and mine head off under my arms. There’s still a bit of swelling under the scar but most of the fluid that built up (called a seroma) has been reabsorbed. I’m not sure if that bulge you can see under the scar will be permanent. It feels quite hard and might soften over time.

The left breast (also known as the evil breast) was subject to radiation and two prior surgeries and it’s not as neat. Please note these shots are ‘selflies’ using a mirror so things might seem back to front. I’m sure you can tell which breast is which from the photos. The left side has got quite a large lump under the arm, and some puckering just to the side of it. I’ve been assured that this is all ‘normal’ and that compared to a lot of post-radiation mastectomies, mine is one of the good ones. That makes me shudder. The smaller scar is from the breast conserving surgery that discovered the invasive cancer. It was unstable for a while but it seems to be healing well now. This side continues to have weird sensations, a bit like mild electric shocks along with the occasional sharp pain. This is also normal but I’m curious as to why I haven’t had any of these sensations on my right side.

Because of the radiation to this side the skin is weaker and will stay that way for over a decade. The pores look larger and the whole area is discoloured. You can see there’s a couple of odd red patches. Although it looks painful, it isn’t. Because of the nerve pain associated with this type of surgery the most uncomfortable spot is actually the middle of my back.

I’m massaging the scars and the bumpy bits regularly with plenty of rose hip oil or hemp oil. This will help to smooth things out and to minimise the scars.

It’s stating the obvious that none of this is pretty. I am very (VERY) fortunate to have had the love and support of my husband who continues to declare me beautiful, even when I’m naked, and who has no qualms at all about touching my scarred chest. I think that this has had more impact than anything else on my emotional recovery. I know some women don’t even want their partner to look at their scars, let alone touch them, but for me this has helped me to feel just as beautiful as I did when I had breasts. Beauty is not just in the eye of the beholder. It’s also a gift that one person can give to another. If he can look at me and see beauty then so can I. Simple.

The whole area has been numb to touch since surgery but now I’ve got some sensation returning. I’m told that I’ll eventually have good sensation again. Time heals. I continue to be very happy about my decision not to have reconstruction. Tissue transplant involves microsurgery to connect the blood supply but they can’t connect the nerves so although the ‘mounds’ they give you are warm and soft to the touch you can’t feel it. I like this better. I also like that my tummy is intact.

When I look at these photos I wince. They look so brutal. I don’t feel brutalised and most of the time I forget I’ve even had a mastectomy. I can still feel my breasts, and my nipples. I’m told some women find this disturbing. I see it as my body’s way of helping me cope with the loss. I suppose the phantom breasts will fade with time as I become more and more accustomed to life without them. I want to caption them; “Not as bad as they look!” I post them to help other women facing this type of surgery. I found similar photos from other generous women really helpful. I’ll post updated photos as I heal.

As the weather warms up I really am enjoying the freedom that comes from not having breasts any more. I do not miss bras. The sundress with shoe string straps that used to be confined to my home now gets worn out, although I do need to be careful bending forward in it. I’ve discovered that wearing my singlet tops backwards stops them from being too low in the front. Because I can see my tummy when I look down, I’m standing straighter and paying more attention to what I eat. I was 86 kilos during chemotherapy. Contrary to popular belief, not everyone gets thin and wasted. The steroids make you gain weight. I’m now down to 78 kilos and well on the way to 75, which I consider to be my best weight.

Although now that I think of it, I probably need to revise that down to 73 to allow for the two kilos I’ve had surgically removed.

After the drama with the gabapentin prescribed for the nerve pain in my chest, hands, feet and legs (it made me think that suicide was a really sensible option) my doctor prescribed Tegretol (Carbamazepine Sandoz). I took it for three days and it had no impact on the nerve pain but it did make me feel like I was stoned. I hated it. My nerve pain was at very low levels prior to my surgery so recovery without drugs is theoretically possible. I’ve decided to put up with it and see if it improves rather than take these horrible drugs. They all come with a long list of awful potential side effects.

The same is true for the NSAIDs prescribed for my lower back pain. It’s really only a problem at night and eases as soon as I do my yoga in the morning. I’m considering an electronic bed so I can sleep with my legs elevated but they’re expensive. I’ve tried using a pillow under my knees but it shifts around during the night and doesn’t seem to help. I’ve tried several different kinds of mattress topper without seeing much difference. Memory foam made things worse and it also has a smell that’s a cross between a swamp and a chemical factory. Something that was supposed to be latex felt harder than the floor. At the moment I’m using one of those ‘egg crate’ toppers made with foam and it’s not bad. I wonder if the Mater Hospital would let me come and stay a couple of nights on one of their beds so I can determine if it was that or the heavy pain medication that made such a difference during my admission. No. Probably not.

All of the NSAIDs I’ve been prescribed, including Naproxen and Feldene, come with warnings that they may cause bleeding into the stomach and that they should not be taken by anyone who has previously had a stomach ulcer. That would be me! What was my doctor thinking? I need to go back and have another conversation about pain relief. I also make the observation that it’s up to all of us to check and double check everything we’re prescribed. Doctors are human. They make mistakes. Sometimes they’re working too hard and sometimes, just like the rest of us, they have a lapse in concentration.

I am now certain that my surgeon made a mistake when she left the marker clip in my breast during my first surgery. It was interesting that one of the doctors at the imaging centre essentially tried to cover for her when I went back to have a marker wire inserted before the second surgery. For a while I thought it had been left in on purpose but the clues have been there. The last time I saw her she made a point of telling me that there was new research into triple negative breast cancer showing that having a mastectomy as the first form of treatment (rather than chemotherapy) led to worse survival rates. I knew this. I keep up to date with the research. I said this to her:

“Kylie, I want you to know that I am very happy with the treatment I’ve received. I know that having chemotherapy first was the best thing I could have done. I know that it would be easy with hindsight to say that we should have just gone with a mastectomy but it was worth trying to save my breast. We couldn’t have known the cancer would come back. And you’ve got to stop beating yourself up about the clip!”

She replied, “I do beat myself up.:

I said, “I look at it this way. If you hadn’t left the clip in then we probably would have been happy with a biopsy when the one year scans picked up something suspicious. Because the clip was there you decided to do another surgery and because of that we picked up invasive cancer at one millimetre. A biopsy probably would have missed it. I know you didn’t mean to leave it in there but it’s probably a really good thing that you did.”

This is honestly how I feel. We both missed the part of the original pathology that clearly mentioned the absence of the clip. At the time we were both focused on the unexpected ductal carcinoma in situ that was under my remaining tumour. It’s all good. Did the clip have anything to do with the recurrence? Who knows. If it had been taken out with the original surgery would I have still had recurrence? Who knows. This woman is one of the finest breast surgeons in the country. I do know that. I worry that the fear of litigation makes it harder for doctors to admit their mistakes and that creates a risk for all of us. If you can’t share information about what went wrong you can’t learn from each other, or even from your own mistakes.

I used to see the same attitude in policing. We were often expected to be super human. Mistakes attracted media criticism, judicial sanction and sometimes a loss of career. Humans will be humans. Mistakes are inevitable. Creating environments where we pretend otherwise is dangerous and unrealistic.

My strength is returning. The aches and pains are annoying but I’d had fibromyalgia for years before all of this so living happily with chronic pain is my forte. It’s likely that some of what I’m feeling is fibromyalgia. It’s triggered by trauma. I’m pretty sure I’ve just experienced a bit of that.

I’m back at my regular yoga classes and I’m only modifying the back bends. Everything else is fine. I usually need to take a few more rests than I did before surgery but I’m doing well after only eight weeks. My range of movement through my arms and upper body is excellent and I’ve only got one tight area left that needs a bit more work. If you put your arm straight out from your shoulder, move it up to about 45 degrees and then try to move it backwards you’ll have found my sticking point. Now if you move your hand in a circle about the size of a large mixing bowl you’ll have defined it. Pretty good really, given that many women have permanently restricted movement. I’m certain this is down to my yoga.

I’m also back into my neglected garden and moving mulch like a human wheelbarrow. It’s very satisfying and a great way to rebuild my strength. It’s spring, so the blossoms are glorious and it’s a great source of joy to be out there with the worms and the soil and fine weather.

Most of the time my mood is great. I am just so happy to be alive. You know those times when you’re driving and you almost have a serious accident but somehow, you JUST miss it? I’ve got that feeling. A little to the left of here, a smidgen to the right of here, and I wouldn’t be here at all. I’d like to write some more about how coming so close to dying can have such a profound effect on living, but not tonight.

I do think about the cancer coming back but it’s not a frequent or particularly troubling thought. I am the sky. My thoughts are the weather. Everything passes with time. I’ll write some more about dealing with fear of recurrence another time. Anyway, here’s the photos I pr0mised:

P1060917 P1060918 P1060919

 

As I said, not as bad as it looks.

Next week my husband and I are off to beautiful Palm Cove in far north Queensland. I’ve told him this is his holiday. We’re going to do anything he wants to do. It’s spring so, just quietly, I’d rather stay home and work on my garden. But he’s had a rough time for just over a year now. His wife’s had cancer. He seriously needs a holiday.

 

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.