Category: Emotional Journey

A friend of mine posted this Guardian Article “What do doctors say to ‘alternative therapists’ when a patient dies? Nothing. We never talk“. Let me begin by saying that I found the article to use an extreme example, which makes me think the author is trying to be sensationalist rather than talk about the issue at hand. The problem with the article is that there IS a huge dialogue going on – they just don’t call it alternative therapy, rather they call it complementary therapy and often it is exactly he same thing!

Cancer research UK provides a good definition for the difference between complementary medicine and alternative medicine (see http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/complementary-alternative/about/the-difference-between-complementary-and-alternative-therapies):

A complementary therapy means you can use it alongside your conventional medical treatment. It may help you to feel better and cope better with your cancer and treatment. It is important to discuss with your doctor any complementary therapy that you are thinking of using.

An alternative therapy is generally used instead of conventional medical treatment. All conventional cancer treatments have to go through rigorous testing by law in order to prove that they work. Most alternative therapies have not been through such testing and there is no scientific evidence that they work. Some types of alternative therapy may not be completely safe and could cause harmful side effects.

However, what this doesn’t say is that often the complementary therapy an an alternative therapy can be the same thing – it is just a matter of context. For example, acupuncture is often used as a complementary therapy to help reduce the side effects of chemotherapy. If someone decided to do acupuncture instead of chemotherapy, then it would be considered an alternative therapy. The same treatment could be considered either a good thing (complementary) or a bad thing (alternative).

Diets are perhaps some of the worst offenders in this realm. Again, eating a healthy diet (and a visit to the dietician) is considered complementary therapy. There are many diets out there that may be recommended by various dietitians. This quickly becomes a slippery slope – dietary research is complex and it is next to impossible to truly know how a specific diet will effect a specific person (if you want to read a good book about the issues with dietary research, check out Good Calories, Bad Calories by Gary Taubes).

My point is, what makes something complementary versus alternative is context. If you are doing it in conjunction with your medical team, then it is complementary, if you are doing it on your own (instead or inspire of) your medical team, then it is alternative.

I should point out that there are quack jobs out there that do prey on the vulnerability of patients with cancer. There should be some way to help better educate people about what is non-harmful complementary therapy and what is harmful.

I can see the draw to some of the additional therapies. During my acute treatment (chemo and surgery), I didn’t have the time for complementary therapies. I did Reiki when I had the chance during AC chemo, but once I could not drive, it was no longer feasible for me to seek out the treatments. Now that I’ve graduated to 6-months follow ups with my oncologist, I find myself drawn to more alternative/complementary therapies. In part, this is because I feel the need for something to fill the void that has been caused by my medical team disengaging in my recovery. I feel that I need to be actively doing something to help my body recover from treatment. I know that for the most part, what will heal my wounds is time – For example, the only thing that will cure the neuropathy in my feet is time (assuming it does get better) – up to two years or maybe even three. However, I don’t feel like I should just sit around and wait for it to get better. I seek out alternative/complementary treatments – physiotherapy, massage, acupuncture. In part, this is because my oncologist just doesn’t seem to care anymore or at least that is how I’m left feeling in this moment – it is not an uncommon thing to feel abandoned by your care team after acute treatment as they are no longer giving you the attention they did during acute treatment (knowing this logically doesn’t help the emotional brain deal with it) – they have moved on to focus on other people who are in acute treatment – for the most part, the only thing that will help recovery at this point is time – and so, for someone who wants to feel like they are doing something to help with recovery, I seek out alternative therapies that provide some sense of doing something … they give me hope and encouragement when I need it.

What I’d like to see is less news that intends to sensationalize alternative treatments, and more information about complementary therapies that can help fill the void when your medical team has moved on to the next patient.

 

One of the things I mentioned in passing during my crazy busy week last week is that I was selected to attend a free weekend retreat for breast cancer survivors. The retreat is called Casting for Recovery (http://castingforrecovery.org) and uses learning how to fly fish as the basis for discussion and processing the breast cancer journey. When I first heard about the retreat, I could not wait to add my name to list. I am truly honored to have been selected the first time I applied. Many women apply for several years before they are invited to attend.

Some of my fondest childhood memories are of fishing for trout in the creek and right off the bridge in Kemano. We didn’t do fly fish, rather we cast-and-reel fishing. I didn’t realize it at the time, but what I loved most about fishing was being on the water. It has more do with getting out in nature and exploring different rivers and creeks then it was about the fishing (although the fresh rainbow trout was always a great reward).

I was taught at a young age that I must not fish without a fishing license. In Kemano, we were so isolated that such things didn’t always make sense, but we did it because it was the right thing to do. So, every year, even when I was too young to need it, I had a fishing license.

I mentioned in my original post, that although I am very much looking forward to Casting for Recovery, it also poses and ethical dilemma for me. You see, all my life, fishing has been about food. I’ve never really practiced catch-and-release fishing. In northern BC, the fish we catch are good to eat. Mostly we fished for trout in the rivers and lakes, and for those who wanted a little more excitement, we fished for salmon. When we had our sail boat, we would go out deep sea fishing. I liked bottom fishing because I was generally more successful at it (we sometimes caught crab on our fishing lines, and often came home with fresh snapper and halibut), but it was much more exciting to go salmon fishing while under sail. My job was to “get the net” anytime we caught something. It was a crazy chaos when we hooked a fish, as we need to stop the boat from moving forward (putting it into the “hove to” position) while someone was reeling in the fishing rod and I was preparing the net to get the fish on the boat – all in a 6 foot by 4 foot space that was the cockpit of our little 24 foot sail boat.

Anyways, I digress. My ethical dilemma is that I don’t like the idea of catch-and-release fishing. I am challenged by torturing fish. It is one thing to kill a fish when you intend on eating it, but it poses another challenge to me to just hook it for sport and return it injured to the water – where it may or may not survive. I talked briefly to the person from Casting for Recovery about this. One solution that I have come up with is to fish without a hook. Fly fishing is so much more about the elegance of the motion, then it is about actually catching a fish. The motion is one that is particularly heeling for those who have undergone treatment for breast cancer – the overhead gentle movements of casting do a great job of providing drainage for a damaged lymph system as well as helping to increase range-of-motion (one of the treatments most women with breast cancer undergo is a sentinel node biopsy, which involves removing a couple of lymph nodes under the arm pits – if there is no cancer then they only remove a couple – if there is cancer, they do a full axial node dissection removing more – in either case, you have incisions under the arms that can impact your range-of-motion).

Another aspect of fly fishing that I hope we cover in the workshops is how to tie flies. Instead of buying lures, which are used in more traditional cast-and-reel fishing, part of the joy of fly fishing is to create your own flies – although this too can be a point of frustration – I remember fishing with my father and losing a fish because the fly wasn’t secured properly! Tieing flies will also prove to be interesting for me with my finger neuropathy – it involves some fine motor skills that will prove to be an interesting test. So, if I can tie my own flies, then in theory, I can create flies without hooks. That way, if a fish bites, it can still spit it out and not be harmed by the fish hook. Either way, I see myself participating in the retreat as a way to help heal my wounds – both physical and mental – it will be good for me!

My other concern is that of spending an entire weekend talking about breast cancer. I’m a bit worried about my anxiety levels as I very intentionally don’t read about cancer in the two hours before bed each night. I am reminded of the BCC conference I went to – the conference itself was good but I left on a low note – because the last speaker of the day was not uplifting. Creating a program that is well balanced and ensures that at the end people leave feeling well is difficult. But then I think, who wouldn’t want to spend a weekend at a lodge in northern California? I’m encouraged by the women who have participated in the program – and hope that it turns into positive and renewing experience for me.

I’ve updated this post on March 2, 2015 to include new instructions if you wish to participate in the sexuality after cancer blog activity.

In preparing the week 2 content on “where do you draw the line” for the Should I blog course (http://shouldiblog.org), I realized that sexuality issues are something that I don’t really talk about. As someone who had hormone positive breast cancer, I’m looking at the next 10 years of hormone blocking medications and procedures. These can have side effects that no one really wants to talk about in a public setting: vaginal dryness, atrophies, shortening of the vagina – but also other sexuality issues like reclaiming your identity as a sexual being rather than a patient, and body image after treatment.

The reality is, I don’t feel comfortable talking about these things on this blog. They are too intimate, and yet they are important topics that need to be talked about. For me, blogging is about capturing the lived experience of real people, not the medical directions of doctors or pharmaceutical companies. My point is, there are websites out there that talk about the medical aspects relating to sexuality and cancer, but there are few safe spaces to talk about the lived experience of sexuality related issue.

So, I have a new project on the go. I am looking for women who have gone through cancer treatment and what to blog about sexuality under an alias. The idea is, that anyone who wants to blog about it (there is a minimum commitment of writing three posts) can sign up for an account based upon an alias of their choosing. They can then blog about it in any form they wish, as long as they never share personally identifiable information on their posts. Once I have 6-8 women signed up, I’ll build the site. With enough different perspectives, we get anonymity and a platform to talk. I’m still working out the details. If you are a women who has undergone any type of cancer treatment, and want a blogging platform to share your lived experience with sexuality related issues then I invite you to join. To sign up, email me directly: rhogue@pobox.com (please create your alter-identity before emailing me, so I don’t know who you are). If you just have questions about the project, feel free to email me as yourself. If I don’t reply within 2-3 days, try again with the email – given the topic, some of the emails hit may spam filters. I will keep a list of participants in an encrypted folder on my computer, and I, as the site administrator, will be the only one who can match aliases to real people (something I will not share).

I will ask all bloggers to create an alter-identity before they sign up and the sign-up process will use only the alter-identity email address and name. I need not ever know who you are.

Directions for creating an alter-identity

Not everyone who has gone through the cancer journey wants to be identified as someone who has had cancer. Some of you may wish to blog but also not have your cancer blog be associated directly back to you. If you are a private person, and are struggling with how much to share, you may wish to assume an alter-identity before starting a blog. However, the power if blogging is that it shares the lived experience of the blogger. Blogs that promote products or provide ‘sage advice’ without sharing anything personal can be very shallow. You can tell when the author is authentic, and it is the authenticity of the story that makes it powerful. However, you can be authentic and share your true story without using your true name. You just need to be careful to ensure that you do not reveal specific details that will allow readers to connect-the-dots between you and the alter-identity.

Here are the steps/tips involved in creating an alter-identity:

1. Choose a new name. In order to prevent self-identification it is best to stay away from derivatives of your own name. Choose something that you will remember, as you will use it a lot.
2. Open a new email account. Use a service like gmail or hotmail to open a new email account assuming your new identity. Use only this account when interacting with your blog and anyone that comments on your blog.
3. Create your blog with your new alter-identity. Use only the name (or nicknames) you have chosen with your new identity.
4. Be aware of who you are when you browse. When using services like gmail, you are often logged in when you browse the internet. Chrome let’s you have different user profiles (see https://support.google.com/chrome/answer/2364824?hl=en). Make sure that when you are reading other cancer blogs and commenting on the blogs you are using your alter-identity. This becomes even more important if you are participating in collaborative activities like sharing Google documents and co-authoring.
5. Write with a different style than you usually do. For example, if you always write in proper English sentences, try out using a lower case i or adding some ‘texting’ words in your posts. Try writing using a different ‘voice’ than you have in your other public spaces. This is more critical for people like me, who blog on multiple platforms already, so I have a very strong public presence. Writing using the same structures would make it easier for people to identify me.
6. Avoid being too alter. That is, avoid making up too much about your alter-identity. You still want your blog to come across as an authentic experience – which means keeping your age, gender, race, etc. These things are really hard to fake, but also, changing them damages the authenticity of the story. This needs to be balanced with the next step.
7. Avoid being too specific. You do not want to include specifics that will draw attention back towards you. If you have a rare diagnosis for example, then being anonymous is much more difficult. You need to include just enough specific details for the reader to appreciate who you are, without allowing the specific details for them to actually know who you are.

 

Yesterday I explored Alum Rock Park (Penetencia Creek area) on my bike. It is the first time I’ve ridden in the hills since chemo. I look back and see that the first photos I shared on this blog were that of my climb up to Mount Hamilton, back on June 20 and 21st. The significance of yesterday’s bike ride was that it was the first time I have tackled hill climbing since chemo. Riding on flat terrain is a whole lot easier than riding on hills, but it is climbing of hills that gives me a good cardio and strength workout.

For a first time riding on hills, the park was a good place to start. There was very little traffic, and cars were moving slowly. I actually expected there to be more trails and a longer road. After 45 minutes I had exhausted all the paved sections. I then rode a little further on an unpaved section until that path degraded into a narrow hiking trail.

Overall, climbing felt great. I couldn’t get enough of it! It has inspired me to try to find the time before my next surgery to climb Mount Hamilton from the fire station. It should be a little easier at this time of year, as I wont be fighting the heat as much as I was back in June. My biggest issue back then wasn’t a physical limitation, more it was ensuring that I carried enough water.

My foldie looking out over Inspiration Point:

 

This is a giant leap forward in my recovery. Climbing Mount Hamilton will represent a significant milestone in taking back my health. I attribute part of it to having signed up for the Living Strong Living Well program at the local Y run by Stanford. Through the program I’ve been doing strength training and stretching. I am amazed at how quickly I’ve progressed since the program began the first week in February (my first exercise day was my birthday). I am so glad I live someplace where a program like this is offered. I highly recommend it!

In my ‘new normal’, I here by declare that all Fridays will be mental health days. For me, this means that I will prioritize things that improve my mental health on Fridays. I will avoid doctors appointments and treatment appointments that are not directly related to improving my mental health. Just as I make exercise a priority in my day-to-day life, I will make mental health a priority on Fridays.

For me, making mental health a priority means taking the time for a longer bike ride (whenever I am able). It means taking the day off of work to visit with friends or to go camping for the weekend. Some Fridays it means visiting my therapist, as I start some cognitive behavior therapy so that I don’t feel that every pain is a recurrence and go down the spiral that was my crisis last week.

This doesn’t mean I’m not working on Fridays – as sometimes working is exactly what I need to be doing to improve my mental health. It just means that when I decide what I shall be doing on a given Friday, I shall do that with a mindful intention of improving my mental health – whatever that happens to look like at the time.

So, from now on, for me, Fridays are my mental health days!

Yesterday, I gave a talk relating to my upcoming free online course – Should I blog? In it, I introduced myself as a breast cancer survivor/warrior. One of the participants challenged that language – preferring the use of the term ‘thriver’ rather than ‘survivor’.

In deciding how to introduce myself, I was fully aware of the ‘thriver’ term, but not yet comfortable with it. You see, ‘thriver’ does have a bit of the connotation of ‘cancer as a gift’ which is an idea that I both despise and feel guilt over (I blogged about my feeling of guilt). For me to be a ‘thriver’, I need to take what I have learned from my breast cancer journey and internalize it in my new way of living — my new way of understanding who I am — I need to finish re-claiming my professional and academic identities, before I can call myself a ‘thriver’.

To me, the term ‘thriver’ represents something that I am striving for. It represents the ‘new normal’, post-cancer Becky, that I have not yet achieved. I may no longer ‘have’ breast cancer, but I am still recovering from the multiple assaults to my system that was breast cancer treatment. I am still fighting to identify as a ‘survivor’. I think I need to finish processing who I am as a breast cancer survivor before I can move on to being a breast cancer ‘thriver’. One day, I hope to use that term to identify myself, I’m just not there yet.

Yesterday was a turning point in my journey towards wellness. I pushed outside of my current comfort zone and drove up to Berkeley to attend an academic conference. It was located at the conference center, which inside was rather dreary, but had a tulip tree in bloom in the sunny outdoor quad (thought I’d taken a picture, but I don’t seem to have it).

On the drive up, I had an ah-ha moment. It came to me how I might be able to pull together a dissertation based upon my research. I don’t know yet if it will work, but it is encouraging to be thinking along those lines again. It is also encouraging to see a path that gets me to the finish line.

My poster presentation went well. I got a chance to talk about my research giving 5 or 6 5-10 minute presentation. I also survived standing on my feet for the full hour!

During the conference sessions, I was fully aware of my current disabilities. I couldn’t just get up and move between rooms if the session was not interesting. I was physically not able to get up without significant effort. I move more like a 90 year old women, than one of my meagre 44 years. This is not obvious to anyone who sees me – at least not obvious until I try to maneuver myself out of a chair. Then a keen observer will notice my slow movements and my facial expressions as I take the first couple of painful steps (after the first couple of steps the pain eases as I get used to it and my joints unstiffen). The conference also involved climbing a set of stairs. After the session, I was walking down the stairs during the rush between sessions. Again, this is when it become clear that I don’t move like I used to. Going down stairs is a much slower process, and people had to pass me or wait patiently behind me.

Conferences aren’t great at appreciating the difficulties one might have with moving around. They also often have standing room only receptions. These are great for those who can move around freely on their feet, but this poses an extra challenge for me in my current condition.

One interesting part happened when someone said they knew me from an online space. I was immediately struck with the ‘how do I answer that’? Up until that point, no one mentioned cancer. No one had any sign that I was someone who had been through breast cancer (unless they recognized my chemo-hair – but no one indicated anything about it). She mentioned that she knew me from a MOOC space, so I listed the MOOCs I’ve been most recently in – treading lightly on the cancer subject – I mentioned the Patient Engagement MOOC and MedX – she said no. Then I mentioned Rhizo (a MOOC on rhizomatic learning that started last January and has resulted in an ongoing community of inquiry). Sigh! She knows me from rhizo, which means she may know of my breast cancer journey, but more likely knows me in a more academic context. It is always cool to meet fellow members of the Rhizo community. Unfortunately, we didn’t get a chance to talk further, as I was presenting and others wanted to hear about my poster.

After the session, I hopped in the car and drove home before the traffic got bad. I realized that I can get to the Berkeley conference center is just over an hour, and the drive was not nearly as bad as I feared. I had originally planned on taking transit, but the conference center isn’t that close to the subway stop, and the added walking would mean I wouldn’t be able to stand to do my presentation. Again, another way my current disability affects my decisions.

So, why do I say this was a day of transition? Because I officially re-claimed my identity as a scholar. Nothing about what I presented was about cancer. I realized that I needed to be my ed tech self, and not my cancer self. Reclaiming my dissertation and pushing to finish it might be exactly the therapy I need to recover from this journey. I do think I need to distance myself from it for a bit – that is, start focusing on non-cancer stuff for a bit – or at least looking at things through a non-cancer lens. If for no other reason, then because it reduces my anxiety and makes it easier for me to sleep at night. It gives me a way to see a future beyond the next month or two, and allows me to re-focus on my life again.

With this transition, you may see me blog less here, and more on my academic blog – http://rjh.goingeast.ca. You may not. I will still blog my cancer journey here, it is just that I wont be focusing as much here as I will be in other spaces on the web – and that is a good thing!