Six Months Post Mastectomy

WARNING: This post contains photos of my mastectomy scars. Skip this one if you’re likely to find that upsetting.

It’s the eighth of February today. That’s six months since my mastectomy.

Anniversaries take on a new significance when you’ve had triple negative breast cancer because our highest risk of recurrence is within the first three years. By the end of five years our risk has dropped to the same as everyone that’s never had breast cancer. It’s one of the few consolations for having a form of breast cancer that’s typically described as ‘more aggressive and with a worse prognosis than other breast cancers’.

I thought you might like to know how I’m travelling.

In a word, brilliantly!

My wounds are almost (but not quite) fully healed. I’ve been surprised by how long it takes. There’s a period of rapid healing immediately after surgery, as I expected, but then there is also a long, slow healing where the scar tissue gradually loosens up and improves in both appearance and sensitivity.

I still get strange electrical pings from time to time, but nowhere near as often as I used to. The tightness around my chest had greatly improved, particularly across my back. Following surgery I had a strange stabbing pain in the centre of my back when my bra fastening used to be. If I rolled my shoulders forward it was worse. That’s completely gone now. So is the mysterious stabbing pain on the outside of my upper arm near the shoulder. My surgeon, Kylie, described both as ‘referred pain’ and I’m happy to be over it.

How to describe the sensation across my chest? I think if you took something like a clay mask,  spread it over your chest and let it dry you’d be approximating the sensation. It’s a little tight, but not painful. Kylie warned me that my chest would get tighter over time and then it would ease. I’m at the happy end of the easing process with hopefully a little way to go.

As the skin has loosened away from the muscle it’s become more comfortable. You can see from the photos that there’s now a little bit of a droopy bit, particularly on the right hand side. I joke with my husband that my breasts are growing back. Actually, it’s a good thing because I now look less like a mastectomy patient and more like a naturally flat chested woman. I’m doing some hand weights to build up my pectoral muscles and to give me a bit more of a natural shape.

Having said that, I’m now completely comfortable with my flat chest. I’ve had a lot of fun replacing most of my old wardrobe. My two favourite ‘looks’ are a beautifully patterned cotton shirt over a singlet with long pants, or one of those box shaped dresses that sits just above the knee. I didn’t feel comfortable wearing shorter skirts before my surgery but now I enjoy putting my ‘yoga legs’ (as Graham calls them) on display. I’m accessorising with beautiful scarves and long necklaces which now sit beautifully thanks to my dolphin chest.

The only pain I have is from arthritis in my hips and shoulders (which I would have had anyway) and the peripheral neuropathy in my hands. They are very sore when I first wake up but improve quickly with my morning yoga.

My recent followup appointment was with my radiation oncologist, Andrew. He reminded me that I shouldn’t give up on the peripheral neuropathy and that sometimes nerves take a very long time to regrow. He suggests waiting a decade before calling it quits. This is great news because Rachel, my oncologist, has warned me that whatever I had twelve months after chemotherapy I would probably be stuck with for the rest of my life. It’s not really a big deal either way. I can still type, obviously, and last week I finally returned to playing my cello.

It’s made me very happy to discover that in spite of the numbness in my fingers, the need to completely reposition my instrument and the poor playing that results from two years without practice, I can still read music and make a beautiful sound. The challenge now is to return to daily practice. Like so many things, the cello requires a regular small investment in order to reap returns.

Andrew and Rachel are in agreement about what we thought was recurrence. It’s likely that this was actually DCIS left behind after the first surgery rather than new cancer. Why does this matter? Well, there’s a huge difference between a bit of old cancer still growing away and a whole new outbreak of the disease, particularly in terms of my long term survival odds. Although I was initially shocked at the possibility that my surgeon had made a mistake I now consider it to be serendipity, a happy accident.

You see, what we know, thanks to Kylie’s ‘mistake’, is that the cancer I used to have was resistant to chemotherapy and radiation therapy. It is almost certain that I would have needed a mastectomy at some point. Having it when I did meant the tissue removed was free of cancer and that greatly contributes to my future survival. You don’t get better margins than ‘no sign of cancer in this tissue’. If Kylie had removed a bit more tissue in the first surgery I would still have potentially lethal breasts with no guarantee that we would have caught the recurrence before it had spread to vital organs. Everything has turned out for the best.

I know Kylie still beats herself up over leaving the clip and some of the tumour bed behind. I’m glad I’m not a doctor. They are human like the rest of us and that means that, sooner or later, they will make a mistake. It’s unavoidable. A world where it’s safe for them to acknowledge that and talk about it is a safer one for all of us. It’s not a metaphor when people say that doctors often bury their mistakes!

It’s an interesting thing to come face to face with your own mortality. Last night I lay in bed thinking about a new blog called ‘We are all dying’ or ‘live like you’re dying’ because I now believe that when you really understand this, all the way to your temporary bones, life becomes richer, more precious, more meaningful………if you let it!

It still sneaks up on me at odd moments. My husband and I will be watching something on the television and laughing or joking about it. I’ll suddenly feel overwhelmed by my love for him and all he’s done and been since I was diagnosed. One day we will both be gone. That makes being here so much more beautiful.

When we’re intimate I sometimes weep with the wave of emotion that floods me. He touches these scars as if they were precious. You’ll notice that the photos are the right way around for this post because I finally felt okay about asking him to photograph them rather than using a mirror and taking them myself. The photos still shock me. From this side of the scars it’s easy to forget. Graham has just adapted to incorporate this new version of my body. He’s so grateful that I survived. He loves me.

My daughter returned from Europe and we have two precious weeks before she returns to university. I want to follow her around and embrace her randomly. I am so proud of her. She could have walked away from her studies without anyone criticising her because, after all, her mother had cancer. But she stuck it out. Her marks dropped but she still managed to pass two of the hardest subjects of her degree. Because the last eighteen months for me have been about surviving I haven’t been able to support her as I would like to have done. Now I can.

Her physical and emotional health have suffered. She’s working on being well. It’s been a shock to her to contemplate a world without me in it and it shows. I wonder if she’s realised that, like me, she is also temporary. Maybe that’s not a concept you need to come to terms with in your twenties although I know from the many young breast cancer survivors I have met that there are plenty who do. I pray for a cure. I pray for a future where she doesn’t have to fear my genetic inheritance.

My six month anniversary present was news from the Mayo clinic in the USA. They think they might have a vaccine that prevents the recurrence of triple negative breast cancer. I want to put fifteen exclamation marks on that. I still cry with joy when I watch this:

http://www.usatoday.com/story/news/nation/2015/02/03/mayo-clinic-triple-negative-breast-cancer-drug-trial/22785941/

It’s too soon to call this a cure. They’re just starting trials and the trials may yet prove that the treatment doesn’t work, but hope is like rain in the dessert when you’ve had cancer.

So, as always, here’s the photos. This is what my body looks like after six months of healing and taking very good care of myself.

P1070195 P1070196
P1070194As you can see, the puckering to the left hand side is much better and I’m reasonably confident that this is going to keep improving. I’m seeing a massage therapist that specialises in oncology at least once a fortnight and sometimes more often than that. I highly recommend it. I’m also brushing my torso with my hands each night to help promote lymphatic drainage. The lymph system sits just under the skin so you really just pat yourself like you would a cat, with long strokes down the body. I can feel the lymph moving when I do this. It’s a mild tingling sensation. I’m hoping this helps me to avoid lymphedema, a common complication of cancer treatment.

The skin on the left hand side is also much better. This skin was damaged by radiation therapy and that’s why you can see such a marked difference between the two sides. You can also see the arc of a scar from my original breast conserving surgery above my mastectomy scar. I’ve been using macadamia or hemp oil, perfumed with essential oils, after my shower and that’s helped.

The question I get asked most often is “Will you be having reconstruction?”.  My answer is still “No”. I am very happy with my decision to do the best thing for my health and have the least amount of surgery possible. Even with all of the weight I’ve lost I still have a little bit of a belly. I’m very happy to have it sitting where it has always sat rather than having it surgically relocated to my chest, with all of the risks, pain and recovery time that would have involved. Just the thought of more than ten hours under anaesthetic was reason enough to avoid it but I’m also happy about not having any more scaring than was medically necessary.

Everyone makes their own decisions on reconstruction and, if you’ve decided to have it, then I sincerely hope you are as happy with your choice as I am with mine.

I’m still not inclined to wear ‘foobs’ (fake boobs). I don’t think there’s anything about my appearance that need ‘enhancing’. Of course, I’m also the kind of person whose happy with my prematurely grey hair, my glasses over contact lenses and my habit of saving makeup for very special occasions. There are some clothes that I know would look better with a bit of a mound. Perhaps, in time, I might have a look at something to go under evening wear but so far, so good.

Emotionally I’m feeling great. Thanks to Russ Harris and the ACT skills I’ve been practicing I now have an effective method for dealing with fear of recurrence. Losing 14 kilos since surgery (and only two of that was actually cut off me) has made me very happy but it’s really The Fast Diet that’s been a major contributor to my emotional well being. I am now in a healthy weight range because of a method that’s sustainable for the rest of my life. I can still enjoy great restaurants and the occasional take away without fear or guilt. The evidence on the benefits of this way of eating and the implications for those of us seeking to avoid cancer continue to mount. I am certain that I am doing the right thing for myself, my body and my family.

I know it’s still possible that the cancer could come back. Cancer is like that. But I don’t dwell on it. I enjoy my life. No, it’s more than that. I CHERISH my life, because I finally understand how precious it is.

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Fear of Recurrence: Part One

I’m feeling well.

I suspect that some degree of peripheral neuropathy is now a permanent thing. It’s been twelve months since chemotherapy and my doctor’s advice is that whatever I have now is probably part of my ‘new normal’. I’ve also got arthritic pain in my hips and one side of my collarbone. I’m 53 in a few weeks and I notice that all of my friends in my age group have their own list of aches and pains. Bad backs, dodgy knees, sexual dysfunction, migraines, digestive problems…….it seems to me that I’m no different to any of my friends. We all have something that keeps us a few steps back from being totally well. Age can do that.

But apart from some niggling lower back pain and numbness in my hands, I’m feeling well.

I saw my oncologist last week for the first time in a year. She’s been on maternity leave and although my surgeon has kept her up to date with what’s happening, she wanted me to go right back to the first surgery and explain everything to her. The radiation, the one year scans with suspicious cells, the second ‘breast conserving’ surgery, the discovery of invasive cancer and then the bilateral mastectomy.

If you’ve been following this blog you’ll recall that there was an issue over the marker clip being left in after the first surgery. It had been placed between four tumours arranged in a diamond pattern. It would not have been possible to remove the whole of the tumour bed without the clip (unless it had moved – but there would have been a hole where it had been). My surgeon has already admitted that leaving the clip behind was a mistake. The pathology from the second surgery found one of the dead tumours so clearly part of the tumour bed was left behind after the first surgery.

My oncologist thinks that my ‘recurrence’ was the original cancer. It was left behind.

This makes sense. There was DCIS (ductal carcinoma in situ) under the one remaining tumour and I don’t think it’s unreasonable that there might have also been DCIS under any or all of the other three tumours.

Of course my first thought was, “Did I really need a mastectomy?”

Actually, my first thought was, “SHIT!!! Did I REALLY need a mastectomy????????”

I spent a day frenetically moving mulch and contemplating that possibility. I felt angry and distressed. I don’t like being someone’s mistake.

Then I realised that leaving those cells behind might have been the best possible thing that could have happened. They survived chemotherapy and radiation. This cancer is resistant to both! Clearly my chances of recurrence were extremely high. Figuring out where cancer comes from in the first place is still the subject of research and theorising, but one possibility for me is that some of the stem cells in my breast tissue were manufacturing cancerous cells. No breast tissue means no breast stem cells.

It’s also possible that a mutated cell from some other part of my body has lodged in the breast tissue, recruited a blood supply and grown tumours as a consequence. Researchers have established that all of us have potentially cancerous cells circulating our bodies all of the time. When I say ‘all of us’ I mean every human on the planet, not just those of us diagnosed with cancer. Most of the time there’s a natural process that causes those damaged cells to die but some of the time they manage to ‘trick’ the body into treating them like an essential cell and then they recruit a blood supply in much the same way that an embryo does.

This is the reason why chemotherapy is so effective against triple negative breast cancer. It targets all fast growing cells. That’s why our hair falls out and our fingernails become damaged. It’s why we need to take special care of our skin and our gut when we’re having treatment. Microscopic cells get wiped out, wherever they are, and doctors can be sure the treatment is working because they can observe the reaction of the tumours to treatment. Recent research into triple negative breast cancer has shown that having chemotherapy first will greatly improve survival chances. If you’re lucky enough to get a pathologically complete response (all your tumours die during chemo) then your odds take a big step up.

Curiously, having a mastectomy first actually decreases long term survival. Nobody has figured out why but it has been observed that triple negative breast cancer seems to recur in scar tissue. It also seems likely that the cancerous ‘seed’ cells are being made somewhere else in the body or that even a few remaining breast cells can regenerate the cancer because otherwise a mastectomy would be a cure.

The difficulty for me is that I’ve now entered the land beyond statistics. My case is so unusual that there’s no data set for it. There is not a sub-group of women that had chemotherapy with a PARTIAL response followed by surgery that PARTIALLY removed the tumour bed, followed by what might have been recurrence OR remnant original cancer.

My oncologist asked me if further chemotherapy was discussed with me. The recommendation from the multi-diciplinary team (the same one that unanimously recommended mastectomy) was that a platinum based chemotherapy be considered. At the time of my appointment I couldn’t remember being offered it but with hindsight I can recall my surgeon saying she’d discussed it with my oncologist who had recommended against it. This is one of many reminders that doctors have lots of patients and it can be difficult for them to remember all of the details of every single case. We need to be responsible for managing our own health.

Having checked my pathology and noted that there was no sign of cancer in the tissue removed during the mastectomy my oncologist seemed to lean slightly towards not giving me any further chemotherapy. You would think I’d be happy with this decision but the platinum based drugs have been showing great results in treating triple negative breast cancer so I’m anxious about whether or not this is the right decision. I’ve left a message for her to call me either today or tomorrow, just so I can be sure we’ve made the right decision. The question I want to ask is “Why did you decide NOT to give me the platinum?” or perhaps, “If you had my medical history, would you want the platinum?”

Perhaps I should seek a second opinion from the oncologist that recommended the platinum.

I am feeling well and my friends tell me I’m looking well. Things are getting ‘back to normal’ by which I mean my health is no longer the main topic of conversation. This is a good thing. I am not my disease.

But I now regularly find myself momentarily horrified by the thought that the cancer is going to come back. Any slight ache or pain becomes a source of concern. Is that headache, that pain in my neck, that ache around my liver, that burning feeling in my bones, a symptom of metastatic disease?

Some nights I lay in bed and obsessively poke and prod my body in pursuit of anything lumpy. Or I see an ad for a concert or show that won’t be on until later next year, and without effort my brain asks if I’ll be here to use the tickets. When the National Breast Cancer Foundation decided to make this year’s Breast Cancer Month all about people with stage four (terminal) breast cancer I found myself unable to read the advice and stories about women in palliative care. I don’t fear death. It’s the manner of my dying that haunts me.

So I am looking and feeling well……..and secretly terrified! I know I share this with everyone that’s ever survived cancer. Fear of recurrence is the subject of booklets, workshops and online forums. A lot of what they advise is already part of my routine. Meditation, yoga, eating well and trying use reasoning or distraction to deal with negative thoughts. Here’s the problem I have with a lot of what’s recommended. A distracted life is a life half lived. Spending my time cycling through negative thoughts about fears of a horrible death and anything to take my mind off it requires effort. It also sucks the life out of things I enjoy.

Let me give you an example. I love gardening. I can happily spend a whole day weeding, mulching and planting but if my motivation for doing that is to avoid negative thoughts then it becomes a completely different activity. Instead of being something I enjoy for its own sake, it now becomes ‘busyness’ to occupy my mind. It’s also not a very effective way of dealing with fear. Yes, there will be stretches of time when the busyness trumps the fear, but the fear always comes back. It’s tiring. Something wonderful and enjoyable becomes soul destroying.

The other strategy familiar to many people will be the use of evidence to argue against the fear. This one is particularly appealing to me, having worked as a police detective for many years. There are two problems with arguing with myself. Firstly, I’m inclined to become a bully. My internal language can easily slip into berating myself for being ‘weak’ or ‘stupid’. Secondly, the evidence that I might be dealing with cancer in the future is unfortunately strong. Going in search of evidence can leave me more frightened than I was when I started.

Some people recommend facing your fears, confronting them, describing them and staring them in the eye. This strategy reminds me of the stone angels in Dr Who. You can hold them still as long as you don’t blink!

It’s true that yoga and meditation both help me to calm myself down. They both provide me with a kind of respite from the fear of recurrence. But they don’t get rid of it.

Recently I learnt about something called ‘Acceptance Commitment Therapy’ (practitioners call it ‘act’). I have found it to be so helpful in dealing with my fears that I’ve been recommending it to other people. I’ve had a few people ask me to write about how I’m using it to deal with fear of recurrence so that’s going to be the subject of this blog for the next few posts.

I am not a therapist, psychologist or counsellor. I’m just a cancer survivor writing about my own experiences so the next few posts will be about my own application of ACT and how it’s helped me.

If fear of recurrence, depression or post traumatic stress disorder is crippling you then I strongly recommend you get professional help. Here’s a website about Acceptance Commitment Therapy that also includes a list of trained professionals in Australia. If you’re overseas then I recommend you google Acceptance Commitment Therapy and locate someone close to you.

http://www.actmindfully.com.au/?gclid=Cj0KEQiAneujBRDcvL6f5uybhdABEiQA_ojMgm2tf_fLhJ8apU0cLDF2tx2OlZNx-3Qxv62V-uOVnH0aAqSE8P8HAQ

You might also like to read Russ Harris’s book ‘The Reality Slap’ which specifically deals with applying ACT to a life crisis. His first book ‘The Happiness Trap’ is also a great introduction to ACT and explains why he has some issues with the whole ‘positive psychology’ movement. Nobody is happy all the time. We’re not made that way.

If you’d like to join me on my own exploration of ACT then here’s the first thing you need to know. ACT requires you to act. I have loved the cello my whole life. Great cello music can move me to tears. I know about the history of the cello, the different styles of playing it and how different kinds of wood are used to give it that beautiful tone. I know about the difference between metal stings and gut strings and what makes a good bow. None of this knowledge enabled me to play the cello. To do that I had to be humble enough to be really bad at it for long enough to learn how to do it well enough to create a beautiful sound.

ACT is like learning a musical instrument, or learning to drive. You need to practice it to be good at it.

If you’d like to play along with me then between now and my next post, notice what you do with your own fears. If you’re also a cancer survivor you’ll probably be using some of the same strategies that I’ve been using. Even if cancer isn’t your big fear there is probably something else that intrudes upon your life on a regular basis. Our mind’s ability to forecast and imagine danger is part of our survival. Perhaps we had ancestors that were optimistic all the time but they probably got eaten the first time they wandered joyfully across the savannah, ignoring the twitch in the grass.

So regardless of your cancer status, your mind, like mine, almost certainly tries to frighten you on a fairly regular basis. When this happens write down what the fear was and what strategy you used to deal with it. I’ll be back next week with some ideas for finding better ways to live a fulfilling, meaningful life in spite of our fears.

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.

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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!

 

The Long Journey Home

When you recover from the flu there’s that glorious moment when you realise you’re well again. The bins are emptied of used tissues, the chest rub goes back into the medicine cabinet and the sun comes out.

Cancer isn’t like that.

When I reached the end of treatment I think some part of me expected to wake up feeling well. I would jump out of bed and head back into my huge garden to spend the day happily carting mulch and pulling weeds. The fact that chemotherapy finished in December of 2013 and here it is almost May of 2014 and I’m still dealing with the after effects should have been a hint. It’s a long journey back to being as well as I can be.

My difficulties are compounded by everyone’s expectation that I’ve recovered. My hair and eyebrows are back and I look pretty much the same as I did when I was diagnosed. Treatment is over and my friends and family are glad to be free of the worry that my cancer imposed. Everyone tells me how well I look. It seems selfish to respond with the truth. I feel like a ran a marathon and got beaten up at the finish line.

It almost seems ungrateful to complain about side effects. No doubt about it, the chemotherapy, the surgery and the radiation saved my life. Most of the serious side effects associated with each of these have passed. I’ve even gained some unexpected bonuses. My hair, always baby fine and fly away, seems to have found my father’s genetic heritage and is growing back thick and wavy. The genetic propensity  for cancer comes from his side of the family so this seems only fair. I’m also now the proud owner of matched breasts and the scar on one of them sits neatly below my swimmers. My previously fragile finger nails are now strong and my skin looks so great even the doctor at the skin clinic couldn’t believe it.

Then there’s the down side. The most noticeable problem is persistent pain in my pelvis and lower back. Massage and three trips to the physio haven’t helped. I think it’s either the notorious bone pain that comes with chemotherapy or a consequence of walking strangely on my nerve-damaged feet for several months. My feet are much better than they were but the back pain is bad enough to make standing or walking for longer than about an hour reasonably painful.

My hands are also sore, particularly first thing in the morning when I can’t make a fist. They improve throughout the day but never lose that pins-and-needles sensation or the feeling that I’ve forgotten to remove a pair of latex gloves. While they’ve been numb I’ve managed to wrench the left thumb and overwork my right elbow. My grip is unreliable. I drop things. I need to be very deliberate with anything hot.

My taste buds are still registering most savoury foods as metallic. If I could live on ice-cream and apples this wouldn’t be a problem. Of course the reduction in appetite does mean that the weight gain caused by the steroids is a thing of the past but I miss sitting down to a favourite meal and knowing what it will taste like.  I’m finding that very bland foods are best, like steamed corn cobs and pumpkin. Most things don’t taste the way my brain thinks they should taste and with very few exceptions this is not a good thing.

The fatigue is pervasive. Enervating. I haven’t been this tired since my daughter was a baby. I need to be flexible about the gap between what I plan to do and what I can reasonably achieve. The trick is to push just a little bit beyond the fatigue, but not so much that it’s counterproductive.

I don’t mean to complain. I mean, I know I am complaining but it seems mean spirited. I’m alive, after all. Lots of people come through treatment with a much longer list of far more serious side effects, including the impact of a mastectomy which I’ve managed to avoid by the skin of my teeth and the skill of my doctors. I don’t feel entitled to complain.

I’m not fatalistic. I’m aware that at this point a lot of people throw up their hands and just accept that their health has been permanently compromised. Here’s my mantra:

THERE IS NO UPPER LIMIT TO HOW WELL I CAN BE

I wasn’t expecting recovery to be such hard work. Most of the information on breast cancer focuses on getting through treatment. There’s a bit of discussion about ‘your new normal’ and some advice about how you’ll be different emotionally, but not a lot of practical information on how to recover from the side effects of treatment. I’ve had to develop my own recovery plan. Here’s a summary:

1. Food
It worries me how obsessed we all seem to have become about food. Every week there’s a new warning on something we used to enjoy and a new ‘super food’ that we’re all supposed to rush out and buy. This week it’s fermented vegetables and the paleo diet (although I’m pretty sure paleolithic man did not eat lamb skewers with chimichurri sauce). Last week it was goji berries and gluten free. My diet is based on the wise advice of my good friend, Cat; cook most of your food from scratch, avoid processed stuff, buy organic where you can, and, most importantly, figure out what works for your body. For me that includes A2 milk and yoghurt, grass fed organic meat and loads of vegetables and fruit. I might do a more detailed blog on my diet one day but it will still carry this caveat; what works for me may not work for you.

2. Drink
Water, water and more water. I still need to work at drinking enough of it. I know I feel much better when I do. I also have two cups of coffee in the morning (no more and none later or I’m staring at the ceiling when I should be sleeping) and sometimes a herbal tea in the afternoon. I don’t drink alcohol any more. I have allowed myself the option of having one drink every month to cover big events where there’s a toast or the occasional dinner out when I may have a single glass with dinner. Mostly this is a way of giving up without feeling deprived. I might not actually have that glass of wine.

3. Exercise
I practice yoga every morning or later in the day if life means I have to skip my regular time on the mat. Yoga has played a big part in my ability to cope with treatment. In the depths of chemotherapy when I didn’t feel like I had the energy to even get down on all fours, let alone move through a sun salute, I would remember my husband’s advice; The days you least feel like yoga are the days you most need yoga. Half a dozen cat stretches later and I would feel my energy start to rise. My beautiful yoga teacher, Emma, encouraged me to start practicing at home, every day, in addition to my weekly class. What a gift her advice has been. She told me that even five minutes a day would make a difference. Some days it really has been only five minutes but most days I start with the intention of doing five minutes and half an hour or an hour later I’m enjoying that glowing, peaceful relaxation that I can only achieve with yoga. I’m also walking. It’s too soon for anything more strenuous but I am interested in high intensity training and it’s potentially cancer combating properties.

4. Relationships
The greatest thing you’ll ever learn is to love and be loved in return. Cancer makes you acutely aware of the finite and fragile nature of life. Spending time with the people I love is an important part of my recovery. So is being grateful and thankful. I am kinder and happier because of this illness. It’s probably cancer’s greatest gift.

5. Detox
Not the fad kind of detox where you drink lemon juice for a week or fast until your gut aches but a whole-of-life detox that involves shedding everything potentially toxic or even just no longer useful. To give you an idea of the scope of this endeavour, it includes the cupboard under the sink, my makeup collection, the pantry, my bookshelves, the DVD collection, my TV viewing choices, my wardrobe and my Facebook ‘friends’. This is a slow process and I’ll probably do an out of season spring clean as I feel up to it. This part of my recovery is about removing chemicals and foods that are potentially toxic and it’s also about simplifying my life, reducing what I own to what I really need and love and enjoying the sense of accomplishment that comes with doing that. I find this kind of housework very therapeutic. It’s also going to involve an emotional detox as I jettison unhealthy thinking, clarify my values and decide what’s going to matter to me from now on.

6. Giving back
Part of my recovery will include giving something back. I’d like to volunteer at Breastscreen or with some other charity that supports people with cancer. I know I’m not quite strong enough yet, but I’m getting there. I like helping people.

7. Meditation
It boosts the immune function, calms the mind and generally makes anyone with a regular mediation habit a happier person. Just ten minutes a day so why is it so hard to find the time? I think if I add it in at the end of yoga that will work.

I’m not sure if this blog will continue to be part of my recovery. In some ways, I feel like it’s reached a natural conclusion. I certainly hope that I never have reason to write about a relapse and I’m not sure recovery is interesting enough or compelling enough to be the subject of a blog. I’ll see how I feel. Perhaps there’s still some things to write about being happy and staying positive even when you don’t have cancer.

Meanwhile I’m going to focus on my recovery. Way back at the beginning of all this, a good friend likened cancer to climbing a mountain. I forgot that once I’d climbed it I’d need to find my way back down again. Let the long journey home begin.

 

 

The Continuing Hunt For a Peripheral Neuropathy Treatment

Peripheral Neuropathy caused by chemotherapy continues to bother me.

This condition is caused by nerve damage at the periphery of your body, so hands and feet, and causes sensations of numbness, mild pain and pins and needles (grade 1), moderate pain and some loss of function (grade 2) and can progress to sever pain and disability. It’s a side effect of some types of chemotherapy.

If you’re a regular follower of my blog you’ll recall that I had fibromyalgia before I was diagnosed with cancer. This condition also causes pins and needles in the hands and feet as well as pain throughout the body. The challenge for my doctors has been sorting out which of my symptoms are related to the fibromyalgia and which are related to the chemotherapy.

I developed grade 1 peripheral neuropathy towards the end of my chemotherapy and my doctor reduced the dose for my last two treatments of paclitaxel. Since finishing chemotherapy my peripheral neuropathy has worsened and it’s probably now grade 2, although my stubbornness and refusal to acknowledge it means that I’m still functioning fairly normally.

I tend to drop things because of the lack of feeling in my fingers and I need to be very, very careful with knives. I’m not complaining. A bit of pain in my hands and feet sure beats being dead! Still, I’m on a mission to find a cure, or at least to do everything I can to alleviate the symptoms.

It’s a useful post-surgical project. Computer based activities qualify as ‘taking it easy’. Apparently I’m supposed to be doing more of that.

My preliminary research, which I wrote about on the 26th of January, suggested that acetyl l carnitine might help. Having tried it for a week my symptoms became worse. The trouble is that there’s also research to suggest that regrowing damaged nerves in your hands and feet may include some short term pain to trying to decide if this supplement is working or not is problematic. Because I’m so close to my radiation therapy I’ve decided not to keep taking it. I want to make sure I’m not doing anything that might work against the radiation treatment and until I talk to my radiation oncologist, supplements are out.

Still, the research continues. In addition to what I found last time there’s a growing list of things that MIGHT help with peripheral neuropathy. The difficulty seems to be an absence of double blind trials into what works and what doesn’t. If you’re not currently undergoing chemotherapy or radiation, and your not in the lead up to surgery (because some supplements, like fish oil and ginkgo, thin your blood) then you might want to talk to you doctor about trying one of these:

Ginko Biloba

Magnesium

Zinc

Omega 3

B12

B6 (note that too much can CAUSE peripheral neuropathy)

Glutamate

Acetly l carnitine

All of these substances have some research behind them but none have a double blind human trial of sufficient size to declare any of them a cure. One of the complications with research is that peripheral neuropathy is caused  by a number of diseases, including diabetes and HIV, and what works for either of these may or may not work for chemotherapy induced peripheral neuropathy. For more information on any of the above substances, just google it with the words ‘peripheral neuropathy study’ after it.

I’d always much rather include food that’s a source of something beneficial than take a supplement. Time and again researchers find that there are things within micro nutrient rich foods that help us to utilise them. Recently New Scientist reported that the vitamin D our bodies manufacture as a result of sun exposure was better utilised than vitamin D in a pill.

At the risk of using a word so overused by management boffins that it’s almost become meaningless, micronutrients (vitamins and minerals) work synergistically with other substances in the foods where they naturally occur.

I remember there used to be a company that sold vitamin pill whose advertising always included the phrase “vitamin supplements may be useful when dietary intake is inadequate”. What a wonderful advertisement for eating well. Recently one of my doctors commented that Australians have the most expensive urine in the world. We swallow more supplements than any other population and most of it goes straight through us.

There’s a word you’ll usually see on the label of any bottle of supplements; ‘may’. As in, ‘may reduce the risk of macular degeneration’;’may promote heart function and prevent memory loss’;’may assist in peripheral circulation’ and so on.

Here’s my tip for reading anything that includes this word. Whenever you see it, add the phrase ‘or may not’.

‘May or may not assist in peripheral circulation.’

You can see the difference.

Eating well, on the other hand, is going to have all kinds of benefits for your body beyond the dubious benefits of a pill. Any time you think a supplement might be a good idea, just google the active ingredient and the words ‘food sources of’.

As an example, food sources of magnesium include dark green leafy vegetables, nuts and seeds, avocado and dark chocolate. Foods high in zinc include dark green leafy vegetables, nuts and seeds, avocado and dark chocolate. Oysters are your highest source of zinc. Yum. Foods high in omega 3 include fresh soy beans, walnuts, flax seeds and grass fed meat. (Yes, oil fish are in there too but I prefer not to eat them).

It’s not at all surprising to me that the same foods turn up, over and over again, as sources of micronutrients. It’s not difficult to get all of the vitamins and minerals you need if you eat well. If you’re going to absorb them well, you also need good gut health which is why I have probiotic drinking yoghurt every day. Once again, a food rather than a supplement.

There are times when supplements are useful. I did take vitamin D during chemotherapy because I wasn’t allowed in the sun. I have taken digestive enzymes in the past to alleviate reflux and heart burn. If your digestive system has been knocked about these are very useful for stabilising it.

There’s no food that contains Ginko Biloba because it’s a tree, which is why I plan on taking the supplement. I actually have a ginkgo tree in my garden but it seems it’s not safe to just eat the leaves because the quantity of the active ingredient/s seems to be highly variable.

Where I can’t fix something with healthy eating I’ll always consider a supplement, but I’ll also look at my diet first. It’s always going to better for me to eat more fruit and vegetables or add in some walnuts than to swallow a pill. It’s a lot cheaper too.

The other interesting bit of research I’ve found about peripheral neuropathy is about cannabis. This plant keeps turning up as a potential treatment for everything from multiple sclerosis to epilepsy. It’s been shown in vitro to kill triple negative breast cancer cells while leaving healthy cells alone and yes, I know that doing something in a petri dish is only a good start for further research, but it’s still a good start.

Here’s the link to the article I found about cannabis and peripheral neuropathy.

http://americannewsreport.com/nationalpainreport/vaporized-cannabis-reduces-neuropathy-pain-8818611.html

Here’s the abstract for the actual research, for those of you that prefer the source material to someone’s interpretation of it:

http://www.ncbi.nlm.nih.gov/pubmed/18403272

You can’t legally grow, sell, use or even give away cannabis in Australia so the benefits for me will remain hypothetical. It’s certainly more evidence that, in my opinion, we need to look at our laws in relation to medical cannabis if only to allow for double blind trials to determine its benefits. This plant MAY cure cancer (did you see what I did there?). 

If you live in a jurisdiction where you can legally use cannabis and you know of anyone successfully using it to treat peripheral neuropathy then please let me know. If you’ve used it illegally to do the same thing then you might want to consider posting under a fake name. I don’t think local police forces are particularly interested in arresting cancer patients but it’s always wise to be careful.

I know some people are shocked by my change in attitude to cannabis. After all, I used to be a police officer. It certainly took a lot more to convince me that a few Facebook memes. There’s a growing body of scientific evidence that supports the claims that cannabis cures a range of illnesses and helps with the management of others. In places where it’s used legally the results are compelling, particularly in relation to severe childhood epilepsy and pain management.

In New South Wales the government recently rejected calls for limited legalisation for people with HIV and terminal illnesses. Part of the justification was the fear that any legalisation would result in more cannabis being available and increased recreational drug abuse. How narrow minded. There is clear evidence that many people with serious illnesses are simply choosing to act illegally. Certainly, if faced with a situation where nothing else was working and a family member was dying, wouldn’t you try cannabis? If your child was having up to 100 seizures a day and you could see evidence of it helping children in other countries with the same condition, wouldn’t you be trying it?

Our government foolishly think that keeping cannabis illegal will limit recreational use of the drug. They have completely missed the elephant in the room; those whose only hope is cannabis are already using it. Current laws are not about whether or not seriously ill people will use cannabis, but the conditions under which they will use it.

I believe sick people should be able to try cannabis, discuss its use openly with their doctors, participate in research trials and grow or buy their own plants. We don’t ban steroids or pain medications because they are abused.

In the mean time, there are also a lot of people that won’t even consider trying cannabis because it is illegal, but they’re likely to be people that never had any intention of using it recreationally. They’re likely to be very sick people that don’t need the added stress of breaking the law and fearing arrest added to their already heavy burden.

And the recreational users? I’m guessing they already use it, and that there’s not a significant group of people waiting for the law to change so they can get high.

Regardless of your personal views on cannabis use, I hope you consider supporting its availability to seriously ill people, or at least consider supporting more clinical research into its benefits for seriously ill people. Given the results so far, I’ve decided that, in spite of my policing background, failing to extend this level of support is inhumane.

The other treatment that seems to relieve some people’s peripheral neuropathy is acupuncture. It’s also on my ‘worth trying’ list but just now I’m taking a break from having anything stuck into me. Chemotherapy involves a lot of needles. So do biopsies, clip insertions and surgery. Enough. I’d like to keep my outer surface intact for just a while, but I will consider acupuncture if the ginkgo doesn’t work.

I’m also going to keep up with all of the other practical things that assist in the management of peripheral neuropathy. Daily yoga, walking, a healthy diet, avoiding alcohol and epsom salt baths all help. If you have this condition then I’d highly recommend an accuball or something like it. Here’s the link:

http://www.acuball.com

These are great for helping to relieve pain and stimulate circulation. My daughter bought mine for me as a Christmas gift from Rebel Sport. I have the mini one, and it’s great because I can keep in my handbag and use it anywhere. I’ve also got a couple of ‘dryer balls’ which are meant to fluff up your towels. They’re a larger plastic ball with spikes all over it. Also great for giving myself hand and feet massages and they’re a lot cheaper than the accuball. Here’s a link to some on Amazon, but look around your local $2 shops and supermarkets first. We picked ours up for $2 from a stand selling gardening equipment in the local shopping centre.

http://www.amazon.com/Ontel-Dryer-Balls/dp/B004W7GNB2

Well, that’s about it for peripheral neuropathy so far. It’s certainly worthy of further medical research. I’ve found a number of posts on discussion boards from people that have been told by their doctors to just put up with it. It’s just not an option for me. Just about everything can be improved with good management. It’s also possible that time alone will heal it.

In the mean time I’m also going to eat more chocolate. That stuff’s good for you!

 

POST SCRIPT: Since writing this post I’ve had a double mastectomy and part of the treatment included a drug called ‘gabapentin’ to relieve associated nerve pain. As an unexpected side benefit it treated my peripheral neuropathy. I can taste food again. I am not waking up with my hands feeling like they’ve been slammed in a door. This is no small thing. My surgeon is excited because nobody has made this connection before. No telling it this works for other people or just for some, but it seems logical that something used to treat nerve pain would also work for a nerve related condition. If you have PN then it’s worth talking to your doctor about this drug.

I also read that evening primrose oil was used to treat peripheral neuropathy in people with diabetes. I tried it. It did seem to help. Unfortunately it increased the frequency and severity of my hot flushes. The trade off wasn’t worth it for me but you might still want to try it.