My Post-surgical Breast

There’s no shortage of information about breast cancer. You can spend many confronting hours trawling web sites or wading through books on the subject. There are excellent ‘official’ web sites, books and brochures as well as what used to be called ‘chat rooms’ (but now they seem to be ‘communities’) where people share information with each other (not all of it helpful or accurate), but there seems to be a lack of information about what to expect after breast conserving surgery.

Most of what I’ve found looks something like this:

‘Expect some bruising and swelling which should settle within the first few weeks. You may also experience odd sensations.’

I didn’t find this useful. Here’s what’s actually happened:

I woke from surgery with an arced wound on my chest about 7cm long. It looked like it had been drawn on with blue marking pen and it was covered by a large, transparent, waterproof dressing. I did not have any drains under my arm as my surgeon performed a sentinel node biopsy and took the relevant nodes out through the same incision as the one she used to remove my remaining tumour.

Here’s a photo taken the day after surgery:

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When I woke from surgery I said ‘pain’ and they topped me up and put me back to sleep. By the time I woke up I was not in any significant pain, more the sort of discomfort you get with a badly pulled chest muscle; move the wrong way and you know it but take it easy and it’s just uncomfortable. I was told to take two panadol every four hours and I did. I learnt a long time ago that it’s stupid to be a martyr to pain. After four days I gradually reduced the pain medication.

The surface of my breast felt numb in some places and tender around the site of the wound. The blue colouring you can see is from the dye they inject as part of the sentinel node process. I didn’t have any noticeable bruising.

I was given physiotherapy exercises to do straight after surgery.  I was able to do without any difficulty but there was mild discomfort and a pulling sensation in the breast when I moved. This was exactly what I expected. I was told not to do any yoga for the first week after surgery. 

I also wore a bra all the time unless I was showering. After lots of experimentation I found a cotton singlet under an ‘Ah Bra’ (a sort of seamless, nylon crop top style of bra) was my best option for night time, and, to my surprise, my ‘going out’ underwire bra was my best day time option. The underwire bra didn’t rub across my wound the way my usual bras did. When I wasn’t wearing a bra I felt the need to support my breast with my hand to prevent a very uncomfortable dragging feeling. Having bra straps constantly rubbing my shoulders proved to be a problem and I found that tucking some padding under them helped. I used the wrist bands I wear to catch sweat at the gym.

Finding a comfortable position to sleep was difficult and I found propping my breast up with pillows helped. There’s a market for a kind of high necked cotton singlet with the sort of support they put into that underwear that straps your fat down. It needs to be absorbent and to have really wide shoulder straps. It needs to be high enough at the neckline to cover wounds like mine. Most bras cut right through the middle of this type of wound. It needs to be as long as a singlet because anything else digs in under the breasts.

A week later the waterproof plaster was removed by my surgeon. I was advised to use ‘micropore tape’ on my wound to help reduce scarring and to start massaging the scar with oil after another week. I was cleared to return to yoga but advised to take it easy.

At this point the site of my surgery still felt hard, similar to the feeling of a tightly clenched bicep muscle. I started to notice that sometimes I would get strange sensations in my breast and underarm, like a small electric current zipping about inside me. Sometimes I’d get a sudden, sharp pain like someone poking me with a finger (most often to the side of my breast, under my arm) and sometimes I would get a dull ache. These sensations have continued even though it’s now six weeks since my surgery. The surface of my skin around the scar is still numb. This may be permanent.

The hardening at the surgery site is disturbing because it feels exactly the same as the cancer felt after it had been biopsied. While I was having chemotherapy, that site became softer and smaller. Having a hardened area in the breast again is very reminiscent of the cancer. After six weeks it seems a little smaller but it’s still there. The breast care nurse tells me it’s completely normal and that it’s also the most common question they get asked. “You need to become familiar with your new breast,” was an excellent piece of advice. It’s a bit like having dental work. The new tooth feels strange for a while until you become accustomed to it. My breast is not going to return to normal. It’s going to be different.

I also noticed a ridge running down the side of my breast, from the underarm to the nipple. On massaging it I found something beneath the skin that felt like a cord about as thick as a computer cable. If I lifted the breast the indentation became more obvious. With exercise and massage this has relaxed. I can still feel it under the skin but it’s no longer having and effect on the appearance of my breast.

I found the micropore tape comfortable. Even though I knew the wound was stitched up I could feel the pull on it caused by the weight of my breast and the tape helped me to feel more securely held together. On the advice of the breast care nurse I changed it every second day and massaged with rose hip oil in between. The official advice is to use ‘Bio oil’ but that’s a petrochemical product and it’s a credit to their marketing department that doctors and nurses alike mention them by name. I’m on a mission to educate!

An important tip for the micropore tape; fold a small corner over on one end before you apply it. This makes it much easier to remove. Picking at the numb skin on my breast with my numb fingers was not a good combination.

Here’s my breast after six weeks:

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Pretty impressive work by my surgeon, I’d say, and I’m not done healing. For anyone worried about the tattoos you get for radiation, this photo shows my breast after I’ve had them and two of them are in this shot. Good luck spotting them. I was relieved to discover that they are very tiny.

Perhaps my biggest post-surgical shock was the continuing impact of chemotherapy. I thought that when chemotherapy ended back in December that I’d coped well and would now be moving on. Instead I’ve had increasing peripheral neuropathy that has progressed from some numbness and tingling in my hands and feet to very painful sensations running up to my knees and elbows. When I wake up in the morning my hands are stiff with pain. I’ve been advised to take paracetamol with codeine and that’s helping.

It terms of my breast, I’m very happy with the outcome of the surgery. Without a bra you can see a bit of puckering around the cancer site but compared to losing the breast (which other surgeons would have recommended) this is a much better outcome. I continue to have strange sensations in the breast, including the electrical zipping and the finger poking sensations. Recently I’ve developed an uncomfortable pain at the site where I know one of the lymph nodes was removed from under my arm. This is new. I think it’s useful to know that the patterns of pain can change, and that you can suddenly develop a new sensation as your breast heals.

I’m able to feel a little more comfortable without a bra which is a good thing going into radiation therapy. Anything that rubs the skin, including a bra, is likely to cause problems. I think I’ll just wear singlets for the next six weeks.

If you’ve had breast surgery I hope you find all of this useful. My number one tip post-surgically is to talk to your local breast care nurse. If you don’t have these wonderful professionals where you live then talk to your doctor. So often we worry ourselves because we don’t want to bother people. It’s not bother. It’s their job. I know I’m now much better at making a phone call when I’m pretty sure the answer to my question will be ‘that’s completely normal.’

There’s a world of difference between being pretty sure and knowing. Knowing gives you peace of mind.

 

Surrender

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Most people associate surrender with failure. The white flag goes up. You’ve given in. You’re defeated. But surrender is not always a negative thing. Sometimes surrender is the best strategy, the only option or the easiest path to happiness. Giving up can also involve letting go. Letting go can mean releasing pressure, tension and expectations.

There is joy in surrender, particularly when the things you surrender have been the cause of stress, anxiety and complexity. Surrender can simplify your life.

When you’re diagnosed with a life threatening illness your mind naturally goes to the consideration of a bucket list. What haven’t I done that I wanted to do. If I only have so much time left then how do I want to spend it. What will I regret. What will I remember. Some people actually make a list and work through it. Others find themselves counting all of the things they’ve already done and feeling pretty happy with their lives.

I don’t have a bucket list. I sat in Monet’s garden in Giverney with my daughter last year, months before we knew I had cancer. We’d left Paris late and arrived around 3.00pm expecting the crowds that everyone told us were the main feature of the garden. Shuffle, shuffle, shuffle. Take a photo. Shuffle, shuffle shuffle…..and so on. Due to the late hour and an unfulfilled prediction of rain that day the tour buses were few. Those that had risked the weather had been rewarded with a spectacular day and they were now heading back to their hotels. We shared the garden with about twenty other people. It was glorious.

We wandered the spectacular colour of the upper garden. Due to a late end to winter followed by a sudden warm spell the whole of Europe managed late flowering tulips and early flowering daffodils all at once. This freak of the weather had delivered a once in a lifetime display and we were here to see it. We sat at the end of the water lily pond, looking back towards Monet’s famous bridge and watching the changing light. I thought to myself, “Now I can die happy.” Monet’s garden was the last thing on my bucket list.

No, I don’t think ticking it off had anything at all to do with me getting cancer. I’m pretty sure that twinge in my right breast as I boarded the plane from Sydney was the tumour growing, and not the pulled muscle that I attributed it to. I still have plenty of reasons to live. I’ve always lived the kind of life where wanting to do something meant coming up with a plan to do it. I’m not inclined to jealousy or longing. How pointless.

Instead of a bucket list I’ve been working through a sort of surrender list. Things to give up. It started with Monet’s garden. As I sat there watching the clouds reflect in the pond, drifting behind the actual willow I’d loved since the first time I saw a photograph of Monet’s work, sliding behind the actual waterlilies that I seen depicted in dozens of his paintings, I gave up any notion of being an artist.

I spent a couple of years at Art College when I was young. I was overwhelmed by the talent around me. I was despondent about the poor employment prospects and low pay for professional artists. ‘Do what you love!’ was what we were told, but what if what you loved couldn’t feed you or pay the bills. I think that for every Bill Gates encouraging us to follow our dreams there are thousands of people that tried and tried and tried and failed. It’s easy to say ‘Do what you love!’ when you’re lucky enough to have become very rich by following that advice, but to suggest that this is going to work for everyone is naive and ignores the observable reality: Most people don’t do what they love. If it were that easy, why aren’t more people doing it?

If we can find employment that plays to our strengths, keeps our interest and gives us a good income we’re doing extremely well. A lot of people will spend their lives doing things they don’t even like to earn a living. I decided to give up the pursuit of what I loved in favour of what I liked a lot.

When I finished my twenty year policing career I went back to painting. Although I expected any talent to have rusted dry, I was actually a better artist than I had ever been when I was young. I was braver. I cared less about wasting paper or paint or getting it right the first time. I cared less what people thought and that set me free. I did some nice paintings and even sold a few of them. The fibromyalgia made painting more difficult. Taking up the cello as a way to deal with post traumatic stress disorder consumed my time. I stopped painting. But I always thought I’d get back to it.

Sitting in Monet’s garden I realised that I love painting for my own enjoyment but I hate showing or selling my work. I’d rather give it away. I don’t want people buying things that match their decor. It feels like giving away little pieces of myself.

The curious thing is that giving up any dream of being a professional artist didn’t make me the least bit sad. I felt lighter. Happier. The pressure was off. I didn’t need to prove anything or achieve anything. I could paint, or not. I could draw, or not.

It seems to me that some of the best decisions I’ve made have involved surrender. I’ve given up on relationships that were toxic and destructive. I’ve surrendered my need to be right, to win other people to my way of thinking. I’ve relinquished my borderline obsession with the ‘right’ way to do so many household tasks and let my beautiful husband do things his own way.

I still own too much stuff. I keep moving things out, giving things away or donating them to charity. Each small act of surrender makes me feel lighter and happier. Stuff needs time and care and energy.

I suppose there are other things I’ll surrender between here and there. I’m still in the process of surrendering my youth, accepting that ageing is going to happen and that I will never look any younger than I do now. I’m hoping I can age gracefully, without resorting to having injections of anything. There’s nothing wrong with growing older. It sure beats the alternative.

My daughter moved out this week and I surrendered myself to that, too. Yes, I will miss her but at 21 she needs to be out in the world, sharing time with her partner and deciding what kind of life she will make for herself. I believe it cripples young people to keep them at home and she’s only been here this long because she was studying.

There are some things I don’t want to give up on, like holding my grand children if my daughter decides to have children. I don’t want to give up on trying to be a better version of myself or trying to be kinder. I’m not going to surrender my dream of being healthy to the fears that come with this disease or the side effects of the treatment. There is no upper limit to how well I can be.

But I do plan on spending some time this week thinking about what else I can move out of my life. The physical stuff is easy to sort. The internal landscape is a bit more of a challenge. What expectations do I still have. What am I still asking of myself. What aren’t I noticing because it’s become so routine that I don’t question it. How can I simplify my life?

Sometimes when I’m alone I say this out loud: ‘I give up.’ Sometimes I say it over and over. I let the sound of it carry away my emotional garbage. It lifts away the tiny slights against me that have accumulated while I wasn’t looking; the man in the four wheel drive that tail gaited us on the way to chemotherapy and swerved in front of us as he overtook us; the woman that saved up her unhappiness and sent it all to me in a rude message; the broken promises; the harsh words. I surrender my anger.

Some days when I’m in pain and I still have chores to get through I give up. I recognise my limits and I stop. There’s something to be said for not giving up at the first sign of discomfort but it’s also important to know when to stop. Sometimes I need to surrender to my own physical limitations.

I suppose it’s a case of picking my battles. I will never give in to cancer. There will be no white flag. It will never make any difference what anyone tells me regarding a prognosis or my chances of survival. If I go down to cancer I will go down fighting.

I hope I live past my eighties. I hope I die quietly in my sleep with no warning at all. If I reach a time when it’s clear I can’t have either of those things then I’ll surrender them too. But not yet.

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I Wasn’t Always This Happy

 

 

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These last few weeks my daughter has been waiting on some important news. She’s applied for a job as a college fellow at the university she’ll be attending next year. The job involves living in one of the residential colleges and providing advice and support to resident students. If she gets it, she and her partner will effectively have free accommodation on campus. This will make life at university much easier for her.

She was happy with the interview and was told she would hear something ‘early next week’. By Thursday of the following week she still hadn’t received a call. Meanwhile, the start of the university year is looming and she’s mindful that all of the good, cheaper apartments off campus are being snapped up. She’s stressed. It’s understandable.

She calls on Thursday afternoon to be told that they were initially interviewing for just one college but have now been asked by the university to fill all of the colleges with fellows. It seems everyone else forgot to advertise. The woman coordinating the panel now has a much bigger job on her hands and won’t be able to give my daughter an answer until ‘early next week’, but she lets her know that she was ‘impressive’, so things look positive. My daughter is stressed. Her partner has his honours year this year, they don’t know if they’ll need a car and the time for organising a move is diminishing. I can hear her grind her teeth from across the room.

‘Early next week’ comes and goes and by Thursday my daughter is about to combust. I want to find a way to reduce her stress, to help her enjoy today and to accept that nothing she can do, including all this worry, will have any impact at all on the outcome. I resist the temptation to give her unsolicited advice about stress management. I listen. We go shopping. We go to the movies.

I remember that at her age I would have been so much worse than she is. By now I probably would have sabotaged any chance I had at the position by phoning the woman and telling her that if she can’t be bothered ringing me she shouldn’t promise to do so.

I also remember that my daughter has had a lot more going on in her life this last year, including dealing with the fact that her mother has cancer. Looking at her reaction in context, she’s amazing. The stressed behaviour reminds me of me but the patience and the grace with which she speaks to this woman when she does finally get in touch, that’s all her.

Closer to the present day I remember that I spent the whole week after surgery feeling great. This is traditionally a horror week for anyone with cancer as you wait for pathology results. I honestly only had a couple of moments when fear stuck it’s head out of a dark and nasty hole. I simply looked away. I took a deep breath. I remembered to look around me and to anchor myself in the present, to be grateful for everything and to be happy. I’ve come a long way.

If you had told me when I was my daughter’s age that happiness was a choice I would have argued with you. I would have defended my seething anxiety with a list of things that were causing my lack of happiness. You would have retreated. Not because you were wrong but because I was so aggressively argumentative that it was a waste of your time trying to cheer me up.

Arguing was something of a family sport in our home, and I was well into my adult life before a kind friend pointed out to me that nobody really appreciated my portable soap box and my authoritative tone. Kindness is more important than being right. Being argumentative makes you unpleasant company. There are times when it’s a great skill and I’ve used it to good effect in a number of professional situations, but I still remember after making a speech at someone’s farewell, a junior staff member turned to me and said, “I’ve always thought you were really hard and intimidating but there’s a nice person in there.” Ouch.

My first marriage ended, essentially, because my husband didn’t make me happy and I didn’t make him happy. Both of us now recognise the dysfunction inherent in that statement. We are both happy now, but not because we divorced. We choose to be happy. I am grateful that we have also chosen to remain friends.

The reason all of this becomes relevant right now is that I know there are people that think I’m just this positive by nature. I’m not. It took a lot of work to get here. 

A woman at the gym this week told me that she wished she could be as positive as I am. She called me ‘inspirational’. I thanked her and told her that there was no reason she couldn’t be this positive. It’s certainly not as simple as just making a decision but nothing changes without that first step. I know a lot of people think that their personality is set. I hear them say ‘I’m just anxious by nature’ or ‘I’ve always been a stress head’ as if there’s nothing they can do to change that. I used to sound like this.

My occupation left me very angry. Wait, I should rewrite that.  When I was a police officer I was often angry, and I still feel angry sometimes about the things I saw. Child protection work in particular, and policing in general, can be a strong source of anger. There are so many things you can’t change, so much injustice, so much tragedy. It’s sometimes overwhelming. Learning to be happy in spite of it is not a simple thing.

I’m also fairly political by nature. I’m interested in what’s going on in the world, particularly regarding climate change, the rights of women, the safety of children, the protection of wildlife and a whole range of other issues. If I’m not careful, I can easily slip into anger about any one of these issues.

There’s nothing inherently wrong with being angry. It’s just personally destructive if you can’t do anything with it. Being angry with cancer has been part of how I’ve dealt with it. ‘Fuck You Cancer!’ is not a Buddhist matra, but it has been part of my strategy for keeping my thinking where I want it to be. Anger can be an excellent antidote to misery. My rage has been specific, isolated, targeted and occasional.

But happiness is my default setting. I really am happy most of the time.

It’s my observation that there are some things we can’t do very much about. They include our height, our underlying body shape, the colour of our eyes and our genetic propensity for inherited diseases. The things we can do something about include our weight, our level of fitness, the quality of our diet and our happiness. Change in any of these areas will require a strategy and some effort. Our success is entirely determined by our own choices.

The good news is that if someone as intense, argumentative and stressed as I was can do it, then you can too. 

If you are one of those naturally happy people then thank you. You’re a source of joy in the world, a pleasure to be around and a cherished friend to those that know you. Your example is a lesson to the rest of us.

If you’re not naturally happy then know that happiness really IS a choice. But it’s not just a choice. It’s also some hard work. The starting point for me included some very enlightening books.

Books: There’s so many including lots of recent ones on the art of happiness and positive psychology. Go online or to your local bookshop and have a look. Find something that appeals to you and start reading.

Two of my favourites were ‘Learned Optimism’  and a brilliant book by the guy that helped develop cognitive behavioural therapy. I wish I could remember the title. There’s lots of books on CBT and many of them a lot simpler than his, but I particularly enjoyed his list of dysfunctional thinking styles. Here’s the link to ‘Learned Optimism’. The same author has recently had another book on happiness become a best seller. I must remember to get hold of it.

http://www.bookdepository.com/Learned-Optimism-Martin-E-P-Seligman/9781442341135?redirected=true&gclid=CI7Gmd-tyrwCFcEnpQod7jkAVw

I also found Daniel Goleman’s work on emotional intelligence really helpful. His journey began with wondering why a high IQ didn’t guarantee you a successful life. Here’s a description:

http://www.booktopia.com.au/emotional-intelligence-daniel-goleman/prod9780747528302.html?source=pla&gclid=CLK5tLrZzLwCFQQipQodcGYAIA

I also remember that M Scott Peck’s book, ‘The Road Less Travelled’ had a huge impact on me in my 20’s. It seems that each generation has a ‘self help’ book that becomes popular and I’m not sure this one has aged well, but at the time it helped me to identify a propensity for blaming anything I didn’t like about myself on other people or on external circumstances. Helpful.

I’m a reader, so books are always a good starting point for me. You might also like:

Courses: Over the years I’ve done short courses on stress management, meditation, mindfulness, dealing with anxiety, assertiveness (friends will laugh but this course actually helped me to express myself in less aggressive ways), Myers Briggs personality type (great for developing a tolerance to difference and an understanding of other people), and happiness.

Look for a local Buddhist centre as a good starting point. They usually have very good, low cost short courses. Buddhism has a lot to teach us about having a happy life, even if you don’t buy into reincarnation and karma.

Online: Apart from a couple of great Facebook pages, this hasn’t really been part of my strategy so far but it could be in the future. You can now get online courses, aps for your phone and a whole range of resources on positive psychology and happiness.  There’s even cognitive behavioural therapy aps to help you with your automatic negative thoughts.

You’ll almost certainly find, as I did, that change is not as simple as just reading and understanding something. I found that I sometimes needed to go over the same material several times before it ‘took’.

There’s a world of difference between understanding something and having that understanding lead to a change in behaviour. If you doubt this then consider that most smokers and most drinkers know it will damage their health but they continue with the behaviour. Most of us now have an understanding of what healthy eating looks like but I know very few people that consistently eat to those guidelines. If you’ve ever worked to change a bad habit you’ll know that the process usually includes a cycle of making a commitment, starting strong, trailing off and then recognising you haven’t stuck to the plan. At the end of that cycle you can decide to give up, or to go back to making a commitment and to going around the cycle again.

Try to think of it as an upward spiral rather than going around in circles. This is what change looks like for most of us. You are not failing.

I’m still working on being a better human. I will be until the day I die. I’m happy with my progress but there will always be room for improvement. The rewards are worth the effort. My life is so much better now than it was in my twenties, and I like to think that my own work has also meant that my daughter started further ahead than I did. Yes, she still gets stressed but happiness is her default setting too. She worries that I see the worst version of her because it’s me she comes to when she’s upset or angry. My response is that if this is her worst version she’s a remarkably evolved person.

More than three weeks after her interview my daughter finally got back in touch with the woman that had failed so many times to call or email her. She got the job. Listening to her on the phone I was impressed by her calm, and her compassion towards this woman who had suddenly found herself lumped with a much larger job and no clear budget for it. The woman apologised and acknowledged how stressful the process must have been for my daughter. At the end of the phone call, all signs of my daughter’s stress had evaporated and she was celebrating her new job.

I know at her age I would not have been so diplomatic. I know at my age I have become someone who would have no trouble dealing with a similar situation without becoming a puddle of nerves. Change is possible. The rewards are worth the effort.

 

POST SCRIPT: Since I wrote this post I’ve read “The Happiness Trap” by Russ Walker. It’s completely changed by thinking on the subject of ‘negative emotions’ and how to have a happy life. Short version; my daughter’s ability to make room for all of her emotions is very healthy.

Planning for Radiation

Today was my planning session for radiation treatment.

I was booked for nine o’clock and was pleasantly surprised when someone came and got me around five past nine. Most medical appointments require at least half an hour of sitting around.

The first part involved three extremely cheerful young people (Wendy, Scott and Melissa) positioning me in something that’s a bit like a bean bag and then extracting the air from it so it holds its shape. It didn’t take more than about ten minutes but sitting there naked from the waist up makes time go so slowly. The resulting piece of sculpture becomes my personal brace for future treatments. It will help them to accurately target the radiation.

Then it’s next door to the imaging centre where there’s a thirty minute wait. Ah yes, that’s more like it.

The second part involved more laying about without anything on my top half while Scott and Wendy measured me with a ruler, drew on me with a marker pen, stuck little markers on me and then sent me backwards and forwards through an imaging machine. Finally I had four tiny dots of tattoo ink injected at strategic points around my chest by Scott. (“Yes, I can do dolphins but you’ll need to use your imagination to see them.”)

I’ve come home with a sheet of information about the treatment and a little card to scan every time I visit, which will be every day for six weeks starting the week after next.

The whole experience was oddly traumatic. Is it possible for technicians to be too cheerful? I love cheerful, but I think when you’re having a humiliating or embarrassing medical procedure you want the sort of cheerful that says ‘I care about your privacy and comfort and I’ll do the best I can to minimise the impact of this procedure for you.’

I don’t mean to be unkind to Scott and Wendy. They really do seem like lovely, caring people. From my perspective I would prefer they dialled it back a bit, and went for ‘connection’ rather than ‘fun’. Ask me a few questions about how I’m travelling. Give me some indication that you’re interested in me and my health and that I’m not just the next person to be processed. Recognise that there is no element of fun in this procedure for me. 

The teams at the Mater hospital are better at this. A lot of it seems a bit pointless, like holding up a sheet while you position yourself and then uncovering your chest anyway, but when you don’t get this kind of courtesy you miss it.

It’s not helpful for staff to tell me they look at women’s breasts all day. Frankly, I’m not that concerned with your comfort right now. I know it’s all common place to you but please understand that I don’t get my breasts out for strangers every day so the frequency with which you look at them is irrelevant to me. I’m embarrassed and coping by pretending not to care. Please cover me up as much as possible and only uncover me when you really have to. It helps.

Can you also explain the procedure to me? And do it before you do anything? It helps me if I know what to expect. Talk to me like I’m a young person interested in joining your profession. I’m not simple. Fortunately I’d done a fair bit of reading on what was involved so I knew what to expect, but this wasn’t because I was sent anything from the clinic. That would have been nice. Even some information about the procedure on your website would help. Yes, it’s an effort to put it together but once it’s up there, anyone can look at it.

While we’re on the subject of managing expectations, please know that if you say to me, “Now you just need to head up stairs and we’ll meet you there,” I will assume you mean that you will meet me there in a few minutes, not forty five minutes. If you know there’s going to be a delay then please tell me, and give me the option to get a cup of coffee or go for a walk.

I also don’t think it’s unreasonable to expect marker pen to be wiped off me before I get dressed. Coming home to find black marks all over the inside of my bra and shirt was not pleasant. It also gave me some unwelcome aggravation. I thought I’d somehow wiped off one of the tattoo marks but it was only marker pen.

Perhaps I’m over sensitive but I just found the whole process a bit overwhelming. I felt processed. The card they gave me with my own personal bar code didn’t help, even though I understand why this system is a good idea.

My father had radiation therapy when he was dying of cancer. It was a long time ago and the technology is much better now, but it’s stirring up the mud at the bottom of my pool of memories.  I know this will also be hard for my lovely Mum. Not again!

Perhaps I found the day so difficult because I was in a bit of pain this week. My options include the after effects of chemotherapy, an accumulation of minor injuries and/or the return of the fibromyalgia that plagued me before I was diagnosed with cancer. I want to be doing more and feeling better. To my mind I am now cancer free. Radiation is the last phase of treatment and it’s all about mopping up and stray cancer cells and helping to improve my survival odds.

Maybe that’s it. I’m cancer free but not treatment free. It’s now over eight months since I was diagnosed and I’ve still got six weeks of treatment. It must be difficult for people working in radiation. By the time most breast cancer patients see them we’ve already had surgery and chemotherapy. Six weeks of daily treatment with weekends off for good behaviour feels like overkill.

But you can’t over kill cancer.

I came home after it all and had a nap. When I sat down at my computer a tiny bird came and sat on one of the chairs just outside the window. He’s been coming every day for several weeks now. He just sits there. I watch him. He watches me. He’s genuinely cheerful. I put some bread out for him today and he looked at me with his head turned sideways. He didn’t eat the bread.

I went outside and walked around the garden. I noticed what was surviving and what was struggling with the lack of a good rain. I’m already looking forward to Autumn. We have tank water so the garden has to survive on rain. Every summer sees some losses. It’s also a lesson in how resilient a garden can be when it isn’t watered. Plants you thought were fragile turn out to be tough. Spaces created by the death of one plant are colonised by another. No matter how harsh the summer, the seasons change, Autumn comes and the garden recovers.

My eyebrows are back. I now have enough hair that I just look like one of those really cool older women that wears her hair really short. (It’s just occurred to me that many of them may also be recovering from chemotherapy.) I still only have a few hairs on my legs but the rest of me is sprouting hair like fresh soil sprouts grass seed. I am astounded at the resilience of my body. Months of toxic chemicals through the blood and within weeks of stopping my body pushes back.

Autumn is coming.

The wound from my surgery has healed well. There’s very little puckering or distortion. In a singlet, without a bra, you wouldn’t know I’d had breast surgery. I’m not planning on wearing that look in public. I just want to acknowledge the skill of my surgeon and let everyone know that breast surgery does not always equal disfigurement. Modern breast surgery includes much more consideration of how you’ll look.

I’m still dealing with the weight gain caused by the steroids and the peripheral neuropathy caused by the paclitxel, but it’s still early days. The night sweats seem to be lessening and I’m down to only one or two hot flushes during the day. I’m feeling strong and ready for the final push.

Bring on the radiotherapy. The sooner it starts, the sooner it ends.

And Autumn is coming.

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.

 

Life After Surgery

It’s been two and a half weeks since surgery.

I’m healing well and doing my version of ‘taking it easy’ which, it seems, is nothing like what my surgeon or my husband had in mind. It seems that their version involves a lot of reclining and sighing. Not me at all!

I’m not being stupid. For the first week I didn’t lift anything heavier than five kilos and I’m doing my physiotherapy twice a day, as instructed. On the advice of my surgeon I’ve now replaced the tape that was on my wound (which fell off in its own time and no, I did not help it!) with something called ‘micropore tape’ which will apparently help to improve the appearance of my scar. This comes in white or skin tone and in a couple of different widths. Initially I was changing this every day but I think I’m just supposed to leave it on. It also makes the wound more comfortable when I’m on my back as it helps to reduce that pulling sensation.

I’m wearing a bra pretty much all the time, unless I’m showering or swimming. I was able to swim this week and wish there was a way I could just move into the pool until I’m healed. It’s so nice to float around in the water.

My breast after surgery feels hard and lumpy in some places and is tender in others. This is normal. I’m so lucky to have the support of the Breast Care Nurses from the hospital. They ring every so often to see how I’m going and they’re available to answer questions. Having a hard lump post-surgically is unnerving because it reminds me of the way the tumours felt post-biopsy. I’m just healing.

I also have these strange sensations in my breast. Some of them feel like stretching and pulling, which you expect, but there’s also an odd sensation like an electrical current arcing through the tissue. Once again, completely normal.

Showering involves supporting my breast with one hand and using the other to wash. Leaving it unsupported is still very uncomfortable and not advisable because my wound is on the top of my breast. The weight pulling on the wound in unpleasant and will be until it fully heals. I’ve figured out that I can dry off by bending forwards at the waist for short stretches of time; just long enough to dry the bits that I can’t reach with one hand while supporting my left breast with the other.

I had a couple of flat days after my pathology results. Not surprising. I was pleased that I was able to lift myself out of that with a combination of yoga, positive thinking and the support of my friends and family.

I was hoping that taking acetyl l carnitine might help to relieve my peripheral neuropathy but it seems to have made it worse. I suppose there’s the possibility that the pain is a sign of my nerve endings rebuilding but I’ve decided to stop taking it for now. I’ll avoid any supplements until after my radiation. If I’m still having problems with my hands and feet I’ll try some ginkgo biloba supplements once I’m out the other side. In the mean time I’m finding my best friend is my acuball. You can have a look at them here:

http://www.acuball.com

My daughter bought me the little one from Rebel Sports as a Christmas gift and it’s now my constant companion. Whether I’m rolling it between my hands or between my feet and the floor, it’s helping with the numbness and the pain. You don’t need to pay nearly $60 for the whole kit. You can buy the balls individually and I’m finding that just the mini ball is all I need. You might also be able to find balls designed to go in the dryer that look very similar and do the same thing. Try the $2 shop!

I’m still getting night sweats and shouted myself a new set of Egyptian cotton sheets at the sales. I need to change them more often these days and you really can’t beat good cotton for helping you to stay cool. I’ve also moved a stack of hand towels to my bedside cabinet and there’s a clean one on my pillow every night. I treat the night sweats the same as a crying baby. Wake up just enough to respond. Try to stay in that place where you’re not quite awake. Do what you need to do and then go back to sleep. When I’m particularly restless I’m plugging in to my iPod and listening to Sacred Earth. You can hear their music here:

http://www.sacredearthmusic.com

Glorious for relaxing, yoga or just getting everyone in the house to chill out. I find that even if I can’t sleep, just relaxing and breathing is restful, and certainly better for me than gnashing my teeth over my inability to sleep.

My hair is growing back. I have a short, white, pixie do at the moment and I’m told everyone gets white first thing after chemotherapy. You can see the new hair starting to grow under it. At this stage it looks very dark but I’m expecting it to be the grey I had before treatment. So far, no surprise curls. My eyebrows are also returning and now look strange to me after so long without them. I have tiny eyelashes and a very strange sensation in my nostrils as my nose hair returns. Goodbye to not shaving my legs and goodbye to my very interesting half Brazilian. Both have been fun.

I’ve read up on radiation and what will be involved. I’ve reread the information on triple negative breast cancer, recurrence rates and mortality. The best advice this week came from my Mum; “You can spend your time worrying about the risks, or you can live. The best months of your father’s life were the last ones because he decided to just live. So just live.”

This week I got back to my regular yoga class, I did some shopping, I made great salads for a barbecue with dear friends, I hung out with my daughter for a while and talked about university and moving out, I pulled some weeds and harvested potatoes and miniature capsicums from the garden and I curled up next to my husband and enjoyed the way he feels and the way he smells. I nursed our old, blind cat and hung washing for the first time since surgery. I enjoyed the sensation of strength and movement returning to my body. Just living.

Yes, yes, probably not anyone’s idea of taking it easy!

I also looked in the mirror and tried to imagine what my breast will look like when I’m fully healed. I remembered there’s still six weeks of radiation and the possibility of skin burns and blistering and changes in the shape of my breast tissue. There will be fatigue and there may be more pain. I remembered what my husband says about pain: If you’re alive to feel it then be grateful you’re alive.

I am so very grateful.

Things could have turned out very differently.

If I hadn’t got that letter from Breast Screen.

If the technician hadn’t readjusted me in the machine and thereby caught the tumour.

If I hadn’t been given the name of my very brilliant surgeon.

If I’d been born in another country.

If I’d been on my own, or married to a different person.

So many reasons to be grateful.

My husband has been so supportive and because I know that it would make him very happy to see me do it, I’m going to spend the rest of today doing not very much at all. Taking it easy.

He wants to see me doing much more of nothing once radiation starts.

We shall see.