Author Archives: Becky

Watch out for my wrath … I’m anti-hormonal

I had written the first part of the title – ‘watch out for my wrath’ on Wednesday when I realized I was way overreacting to things again. I first notice it when I start yelling at drivers for mild infractions, a happened on Wednesday on the way to the gym (my first awareness of being overly emotional/angry). Then on Thursday it was the person at Costco. I was trying to return something. I had a cart because it was heavy. I first went to the in-door to get it tagged, then tried to make my way to the return counter. Unfortunately the line up of people departing was too long (and two deep), so I went out side and tried to get in on the other side of departing carts. The person checking receipts at the door was in my way (just slightly, I couldn’t quite get behind her). I said ‘excuse me, I need to get by’, she ignored me, I said it again, she stepped more in my way, ignored me, and told the next person who was trying to exit (and let me through) that I was ‘going the wrong way’. Which annoyed the hell out of me. Fortunately, I saw an opening in the crowd of outgoing carts, that I could dart in and get to the returns desk. I was most certainly NOT going the wrong way. I complained to the returns person, who was truly really helpful – but I also realized that my emotional response to the situation was WAY off the mark. It should have been merely annoying, rather than something that had me steaming mad.

So, what caused this wrath? Well, I decided on Tuesday that I’d try going back onto an aromatase inhibitor (AI). This knocks my body’s estrogen levels down an extra notch. The lupron that I take (now every 2.5 months) knocks the estrogen to below menopause levels – that and not having any breast tissue – so the AI takes it down another notch. It is not without its side effects. The mood swing was manageable, as I would have mellowed out after a week or so. Unfortunately, the headache and severe brain fog was not. The increased joint pain was also likely to be an issue, especially given the state of my back. So, I stopped.

This AI experiment only lasted two days. At my last oncologist appointment, he said that if the side effects of the AI were negatively effecting my quality of life that I didn’t need to keep taking them. It was kind of odd, as he suggested that, not me. I know many women my age who’s oncologists are pushing them into tamoxifen/AIs even though they are having horrible side effects. I can only imagine that they have other factors at play – younger age at diagnosis, more aggressive cancer, breast tissue (so not double-mastectomy), or a gene that puts them at higher risk of breast cancer recurrence. I don’t know, I just know that my oncologist isn’t saying “you must take this”.

I suggested that I didn’t recall the side effects being that bad (other than the ear popping sensation, which was later determined to be blood pressure med related). We decided that I’d give it one more try. He suggested that I wait for a time when I didn’t have a lot else going on – so I waited until I knew I’d not be travelling for a few weeks, after our out of town guests left, and between deadlines for the class I’m teaching. I’m glad I didn’t try when I was busy as I ended up with two days of getting pretty much nothing done – and realizing that I cannot live with those headaches. I cannot even imagine writing a dissertation when I cannot hold a thought.

And so, after being a little anti-hormonal for a few days, I’m back to my ‘normal’ non-hormonal level of sanity. I will still continue with lupron shots (currently at 2.5 month intervals) – at least while it is not producing any bad side effects – the alternative to lupron is an oophorectomy (surgery to remove ovaries). I’m not keen on that – at least not for the time being. Since I don’t carry the BRCA gene, I’m not at increased risk for ovarian cancer. In theory, after 10 years (or less) I won’t need lupron, and will be able to allow my body to go back to whatever ‘normal’ is for a post medically induced menopausal women.

My paradoxical future

I’ve been struggling a little lately with this thought – how do I envision my future? When I was diagnosed with cancer, I had a clear sense of what I no longer wanted to do. I was blessed with the ability to forget about sunk costs, and just make decisions based upon what I wanted to do during the times when I was not sick or in treatment. Between all the doctors appointments and chemo nausea, I spent time focusing on daily exercise, reading books I wanted to read, and doing things I enjoyed (e.g. camping, sailing).

Now that I’m two years post treatment I find myself struggling to figure out how much I should be planning for the future. I worry about getting old and not have access to healthcare, but then I think, maybe I won’t get old, so why worry. I know that sounds kind of morbid, but there is a reality in it.

I often ask myself “If I only had 5 years to live, is this what I would like to be doing?” (I thought I had written about that before, but I cannot seem to find that post). What I am wondering right now is why is what I’m feeling today different from what I was feeling when I wrote that blog posts (or didn’t write it!).

I’m feeling paradoxical about my future. Part of me is optimistic. I want to plan for a future that has me getting healthier and having the flexibility to do what I want. I want to plan for a future where we have the financial stability necessary to enjoy life without feeling the need to work. And wouldn’t it be nice to know we had access to healthcare as we aged?

Then I find myself wonder, “if I only had 5 years …” and I’m thinking, why I am wasting my time with working (really it is why I am encouraging Scott to keep working), and why don’t we just quit everything and travel and enjoy ourselves. Why not forget that we might have a future, and live life to the fullest right now? Will I end up regretting not taking more time to have fun?

Part of the challenge is, that when you are in that window of “if I only had 5 years…” chances are you are also too sick to enjoy it. The reason you only have five years is because you are sick. And that sick takes away your ability to really do those things that you want to do, so you need to do them while you are healthy enough to do them, but when you are healthy enough to do them your life is so focused on the future.

I recall one of my epiphanies from our time at Commonweal, was the concept of a fantasy future. In many ways, we needed to grieve the loss of a future that was never going to be anyways. That future that I lost was one where we were health and grew old together. It wasn’t a realistic view of the future. I knew that at some time or another something would happen to make one or both of us not healthy. We decided to go on our 16-month bike trip when we did in part because I felt like it was really a “now or never” kind of thing. I didn’t see myself getting healthier in the future. Boy am I glad we did that!

And so, I’m back into that paradoxical thinking. I have a desire to both plan for a long future and I’m feeling the need to seize the day.

For my readers that have deal with critical illness, how do you approach the paradox of planning for a long future and seizing the day?

Feature image CC0 via Pixabay.

Today I put my wedding ring on

I took off my wedding ring in a bit of a panic as I noticed my left arm swelling. That was back at the beginning of October in 2015. Reflecting, I remember it being several months before I got into see the specialist – but looking back on it, it really only took 3-4 weeks – funny how time causes a shift in perceptions of time! Anyways, I remember feeling like it was taking forever to get into see the world expert in lymphedema – fortunately he is also at Stanford so my breast surgeon’s office could provide enough of a squeaky wheel to get me in. I think the sense of time shift was in part because my hand and arm were clearly swollen and I was in a bit of a panic about what to do about it.

I was lucky. I got treatment quickly, but also my issue was minor. In the image below you can see how my left hand is all puffy – that was October 3, 2015. Compare that to today’s feature image.

2015-10-02 13.43.20

It took more that 6 months of daily compression (30-40 mmHg) to clear it up. Now I need to wear sleeves (on both arms because I had lymph nodes out on both sides) when I’m over 5000 feet, flying, or doing exercise that involves strain on my arms. Fortunately, the preventative sleeves are only 20-30 mmHg, so more comfortable. That being said, when my arm was swollen, the compression felt good. Now that the arm is not swollen it is not very comfortable – mostly just a nuisance. The bigger issue, which I’ve lamented on before, is that I cannot take IVs in either arm – that will be a lifetime pain the foot! However, with each IV in the arm, there is a 1% chance of lymphedema of the most nasty kind – causing the effected arm to swell to 3-4 times the normal size within hours.

Recently, someone who just had some arm swelling was asking me about my experience – which made me want to write this. I want this to be encouraging. That being said, I cannot say anything about major lymphedema as I only had minor lymphedema (stage 0/1). I’m told that if it was any worse then it would be “a one way street”, that is, not curable. But for those who are reading this that only have minor swelling, there is still a chance that it can get better. I attribute my healing to compression, but also to swimming. I made a conscious effort to swim at least 3 times per week – swimming about a mile, which meant an hour in the pool.

My arms have been clear for more than six months now, so I finally feel ready to put my ring back on. I had been afraid that putting it on would cause things to swell again – some sort of jinx or something. However, I found that I was missing my ring. I wanted to wear it again. Fortunately, it still fits! And so, I have returned my wedding ring to where it belongs – on my finger!

Do you have experience with minor lymphedema? Did yours get better? If so, how long did it take and what did you do to treat it?

Circle of 6

One of my students is using the Circle of 6 app in the course she is designing. In looking at the app, I found myself thinking that it might be a useful resource for ePatients – especially in the chemo and post-surgery. I totally see times when my husband went to work and I was alone in the apartment. If I ran into trouble I could use the app to say “hey, I need help”.

The app itself was designed to help people who are at risk for experiencing sexual assault, but I could totally see how it might apply to patients.

What do you think? Is this an app that you might find useful?

Back pain (not cancer) and the need to self-advocate

I thought I’d start by saying that this post doesn’t talk directly about cancer – in that my back pain isn’t caused by cancer as far as I know – it is caused by arthritis and spinal stenosis.

My back pain had gotten so bad that I finally made the decision to try the epidural injection. When the shot was first described to me, I was scared away from it. I opted to use anti-inflammatories and pain killers as a way to manage my back pain. It mostly worked for a few months, but then things started get worse. It got the point where I was ending almost every day in pain. Cooking, something that I love doing, was one of the worst offenders – because it involved a lot of standing. My family doc had mentioned that the shot had helped a lot of her other patients, so with that, and the continued pain, I decided to give it a try.

The process turned out to be a little more involved than I thought it would be. I had envisioned going to the doctor’s office, bending forward (or laying down on the examining table) and having a couple of shots placed in my back. I’ve had cortisone shots before (e.g. in my toe before my toe surgery), and so had thought this too would be that simple. Nope. This shot was done in the day surgery center. It wasn’t a surgery, but was still rather involved.

The first point of pain was that I could not eat or drink anything before the procedure – as is common with most surgeries. Not a huge deal. I’ve actually gotten pretty used to it (ugg… hate that surgery has become normalized for me).

The next point of pain involved getting an IV. This turned out to be much more of a production than I expected. I’m not allowed to get IVs in either arm. The lymphedema specialist was very clear on this one. Anytime I have an IV in my arm, there is a 1% chance of irreversible lymphedema. Within hours, my arm could swell to the point of it becoming a medical emergency. It would be much worse than the minor lymphedema that I experienced last year (which took wearing compression garments for 6 months to relieve). And so, this time I was firm with the staff that I could not take an IV in either arm.

None of the nurses were comfortable with the idea of placing an IV in my foot, so the anesthesiologist was called in to do it. Unfortunately, he wasn’t able to find a vein. My veins were hiding away – as I had been dehydrated from the “no drinking” part of the preparation. After confirmation that the IV was required (the doc wouldn’t give the shot without an IV and some sedative), they called in another anesthesiologist who was could place an IV in my neck if needed. After a fair bit of a wait (they said it could be 2 hours, but it turned out to only be another 45 minutes), the new anesthesiologist came in.  I had realized after the first failure to find a vein in my feet, that I had been laying down while he was trying. Laying down makes the veins hide. I had suggested to the nurses that maybe he could try again while I was sitting up, but they opted to call in the second anesthesiologist instead. She listened to me. She had me sit up, and dangle my feet off the side of the bed. After a few minutes, and a failed first attempt, she was able to get the IV in the second attempt.

I couldn’t help think about the difference in approaches – and how each made me feel. I hated the paternalistic bullying that I felt from the first anesthesiologist. His comment to me about how “it is OK to take an IV in my arm” despite what I had told him felt rather condescending. It was like after knowing me for 2 seconds, with little to no history of my condition, he had a better sense of what was good for me than I did. That my opinion on the matter wasn’t relevant to him. That being said, consent was needed, and I would not consent to an IV in my arm, so he had to do it my way.

With the IV in place, I was wheeled in, given a little versed via IV, given the shot, and wheeled out. The entire procedure was maybe 20 minutes. The IV issue meant that I spend 3 hours in the surgery center instead of 45 minutes. Ugg.

The good news is that so far the shot seems to have relieved a lot of my back pain. It isn’t totally gone, but it is no nearly as unbearable as it had been. I’m hoping that with the relief, I can now concentrate on some strengthening and stretching exercises that will reduce the likelihood of the pain coming back. I am hoping that the nerve block (which is what they did) lasts.

I’m not at all happy about all the drama associated with getting the IV. This is something that I’m going to be struggling with for the rest of my life. I need to find a better way to ensure that people know and understand what it means when I say I cannot take an IV in either arm (even from a scheduling perspective, so that they have the right staff available when they schedule the appointment).

I’m also left reflecting on what others who are not so willing to self-advocate do? Would you allow the anesthesiologist to place an IV in your arm knowing that it could cause permanent damage? How do you stay strong and self-advocate when you are also in pain? Why does navigating the healthcare system need to be so hard?

Making valuable choices

“I often think I have not yet been ill enough to know how to live. I still evaluate choices in terms of what counts on my resume, instead of asking whether I am producing something I think is valuable and if I am meeting people’s needs rather than fulfilling the demands of some system” (Frank, 1991, p. 119)

I find the reflection of Arthur Frank to be rather interesting, as I find myself constantly asking the question “is this what I want to be doing with my time?” I do find that I think occasionally about my resume, but not as much as I used to. I’m less focused on collecting conference presentations or publications. I think more about whether or not fundamentally I’m doing what I want to be doing.

I recently cancelled a conference presentation and trip. I had originally thought I wanted to do it, but after my last trip I realized that it wasn’t how I wanted to be spending my time. I want to focus on doing things that make my body strong and feel well. I hate not feeling well – and spending too much time travelling to conferences isn’t making my body well.

Part of what helps ground me, and keeps me from falling into the traps of the resume building world is the time I spend with my friend Lori. She has metastatic breast cancer – that means her cancer will kill her. The only thing keeping her alive is chemotherapy. We spend time together hiking. We explore trails in the area, seeking out paths through trees and views of the valley. During out walks we talk about pretty much everything and anything. We reflect on life, often retelling the same stories over and over. In many ways, it doesn’t matter what the conversations are about, more that they are conversations that allow us to keep walking – and that walking helps keep our bodies strong. Walking with her reminds me to value my days and to keep living. Our time is precious.

In addition to hiking, I’m looking into some gentle yoga classes. About 20 years ago I did yoga fitness classes, and on our world tour bike trip, my hubby and I had a morning yoga routine. We did daily yoga at Commonweal, but that was much more about meditation and less about stretching and balance. What I need now are routines that help me stretch, balance, and strengthen.

I am finding myself back into the position of trying to do too many things, such that I cannot seem to get to any of them. I want to be biking more often, and swimming more often, and hiking more often, and then adding in yoga on top of all of that. Mostly, I could use a little encouragement to actually get there. To get too that yoga class … if I go to the one at my gym I can combine it with a swim. I’ve added it to my calendar, so we’ll see if that helps make it actually happen.

The other big goal I’ve set for myself is to get my dissertation done by the end of the calendar year. If I cannot finish by December, I’ll need to apply for another extension to my program. I do not expect any problems with getting an extension, but really, I don’t want to need to be doing it. I’d like to get it done so that I can move on to the next phase – whatever that may be. I’m enjoying my time doing my dissertation work, but I’m also feeling like I need to start seeing the light at the end of the tunnel.

And so, as I read, At the will of the body, I find myself reflecting on the choices I’m making about how I spend my time, and feeling like I am making choices that I feel are valuable to me.

 Reference:

Frank, A. (1991). At the will of the body: Reflections on illness. New York: Mariner Books.

Selfishness to reduce stress

I took advantage of some spare time between appointments today to go for a walking along a lovely creek trail. I was struck by the beauty but also the sense of peace associated with the tall trees and the green around me. I noticed pretty purple spring flowers that are now in bloom. With all the water this winter, the hills are alive with green foliage. It is beautiful.

I’ve been rather stressed lately with the worry of what is happening here in the US. I’ve been worried about what will happen to so many of my friends if the ACA is repealed without a plan to cover pre-existing conditions. I’m also worried about life-time maximums. I have too many friends who are undergoing really expensive life-sustaining cancer treatments. Lifetime maximums would be a death sentence for them. This has been weighing heavily on me.

I am someone who sees the big picture. I find it frustrating when I see people making decisions based upon themselves, without any consideration for the bigger picture.

But, what occurred to me while walking, is that I’m carrying a lot of stress that isn’t about me – and that isn’t good for me. I know it sounds selfish, and it is selfish, but I need to be selfish for the sake of my health. Not being selfish is causing me to carry a lot of stress that isn’t good.

I am aware of my privilege, but today I found myself taking stalk of it. I am a white well-educated Canadian. My husband has a good paying job, with good health insurance. He is not likely to lose his job, and if he did, we could pack up and move back to Canada. If I chose to cross the boarder today for any reason, the likelihood of me being subjected to an invasive search by US Border Patrol upon my return is minimal – because I am a white Canadian who was born in Canada.

The things that have been causing me a lot of stress lately don’t directly affect me. Now, I have some things that are causing me stress that do affect me (like my health, back pain, risk of recurrence), but I also have a lot of things that are causing me stress that don’t directly affect me (crossing borders, healthcare costs, insurance, …).

While walking today I realized that I need to let go of the stress associated with things that don’t affect me. I can be bothered by them, yes, but I should not hold onto that unhealthy stress. It is not something I can do anything about. I remind myself that we would not be living here if my husband’s employment did not include adequate healthcare. That was part of the deal when we moved here. If the situation were to change tomorrow, we have options.

It feels selfish to let go of the stress, but I also know that it is not serving me well. The world is gaining nothing by me taking on stress over things that I cannot control. And so, selfish as it might be, I’m going to try to let go of it. I will hold onto good stress – stress that helps me be a better person, but not futile stress – stress that I cannot do anything about. I will try to enjoy more the beauty around me. It is a beautiful spring day in California after all.

Letting go of at least some of the fear

It feels good when your oncologist acknowledges that what you are feeling is real. Today, I had a six month oncology follow up. This is the first time I’ve gone a full six months without seeing my oncologist. It was a bit of a break through. That being said, for the last two to three weeks, I’ve been having Lupron woes. I’ve found myself overly moody and especially cranky/angry at things that really shouldn’t bother me. It was becoming rather problematic. I’m really glad that when I mentioned it, my oncologist acknowledged that what I was feeling was real, and it was something that we could/should do something about. And so, we’ve moved my Lupron shots to every 2.5 months rather than 3 months. We’ll see if that helps to even out the mood swings/hot flashes at the end of each cycle. If not, there are other options.

We also chatted about Aromatase Inhibitors (AIs). There is a theory that I should also be taking one. I stopped taking them 6 months ago because I was feeling horrible and couldn’t figure out the cause. I had a weird ear popping sensation that now I know was related to blood pressure meds, but at the time I thought it was that AI. My oncologist suggested that it was my choice – that if the side effects where too problematic, that the added benefit (beyond the Lupron) might not be worth it. I don’t recall side effects being too bad, as the main issue I had was related to my blood pressure meds. So, I’ll try again when I don’t have too much happening. The big concern for me is the bone/joint pain. If the AI increases pain, then it becomes not worth it. I’m already struggling with back pain, so I don’t want to add anything that will increase it. What I find particularly interesting is that for the first time I’m making decisions not out of fear. In that, I am deciding about the AI without feeling like it is a “safety net” that I need. It might help, but I’m also open to the idea that if the side effects suck too much that I am OK with not taking it.

The not so great news was around likelihood of recurrence. Now truthfully, there is no real way to know. My cancer was pretty unique. That being said, my oncologist sees a lot of people, so I trust that he has a good sense. I finally got up the courage to ask – it wasn’t easy. I’ve wanted to know for a long time, but I just couldn’t ask. I had hoped that I would hear that I was in the group of women who have a greater than 95% survival rate. Unfortunately, that wasn’t the number that he through out. He commented that with ER/PR+ the recurrence rate doesn’t peak at any point, rather it is pretty steady for the first 11 years before it drops off. Then when I asked he through out the number 20-30%. That is actually the pretty standard number, but not the one I was hoping for. I was hoping that because there are others with much higher recurrence risk, that my number would be lower. It certainly causes a moment of pause. And so, with that, I will plod along reminding myself to take one day at a time and reminding myself to keep truly living rather then dwelling on what the future may hold.

Feelings of health

As my health improves, I am struck by feelings of fear that the cancer has returned. It is a total juxtaposition – the idea that feeling healthy is a sign of sickness.

I discussed this with my therapist the other day. She commented to me that breast cancer, unlike many other cancers, creates this juxtaposition, because early stage breast cancer only appears in the breasts. Those who have it often don’t feel sick in any way. This is in part of why the diagnosis is such a shock when it comes – because you are not feeling sick.

Before treatment started, I blogged about how I felt stronger than ever, and as a results was associating the sickness with the treatment not the disease. I remember being angry about it. At the time, I didn’t see the other side of that coin – the association of wellness with the disease.

So now I’m working on the other side. I’m trying to allow myself to both feel well and not have cancer. I find myself wondering if my body is making up aches and pains so that I don’t have that wellness feeling that I had when I was diagnosed. That or I’m just remembering wrong. Maybe I did have body pains before cancer, and I don’t remember it because in my mind I was doing really well before cancer.

I do hope that some day this fades away.

End of Life Options Act

The End of Life Options Act is the State of California’s death with dignity legislation. It allows mentally competent adults with a terminal illness, such as metastatic breast cancer, to gain access to medications that help them choose the time and situation of their deaths. The website I’ve linked to above includes all the forms provided by the government, to help both patients and physicians make informed decisions and navigate the new legislation.

Today was an emotionally difficult, but important, day. It wasn’t about me – I don’t have metastatic breast cancer. As far we know, my cancer was treated. My friend, however, a 45-year old mother of two (her youngest being 10 years old) isn’t so lucky. She was diagnosed with metastatic breast cancer about 3 years ago, after an initial diagnosis of early stage breast cancer followed by a couple of years being cancer free, before recurrence. She has undergone several different chemotherapy regimes. She isn’t ready to die yet – but she knows that although she may be doing well today, things can change very quickly with her disease. She has seen at least one progression, where her cancer went from “no evidence of disease” to significant tumor growth in the span of weeks. So, she knows her body, and she knows a heck of a lot about what it means to both live and die with metastatic breast cancer. She is in no way uninformed.

As part of the End of Life Options Act, there are many checks-and-balances. The first is that upon the patient’s request, their primary physician (in her case a pretty awesome primary care doctor) explains the laws, but also that there are options in death. That there are multiple routes to end-of-life, including with significant support from palliative care and hospice care. After leaving the first appointment, with lots of information and handouts and such, the patient then needs to wait a minimum 15-days before requesting a follow up appointment. The documentation is not signed until the follow up appointment. At the second appointment, a non-relative is required to come and witness the paperwork. Actually, there are two witnesses in the current iteration – one who cannot be a relative or in any way benefit from the patients death and who is not a member of the physicians medical team/staff, and the other who is there as a second witness. The second witness can be from the physicians office.

Today, I was my friend’s witness. I watched as the doctor spent an entire hour listening to my friend – deeply listening. Hearing her concerns / questions about the legislation, and speaking to them. I watched as she saw beyond the question and prompted to learn what the real cause of concern was. The doctor was one of the most empathetic but also most talented primary care physicians I’ve ever seen. I was truly amazed at their knowledge of the process, but also with their knowledge of the patient experience – and how to help reduce anxiety and answer questions.

The physician explained both the process of the legislation, but also the process of the health organization for whom they work. The doctor explained that a second consulting physician will be needed, and that the second physician (in this case someone from palliative care) will explain all the options for end of life care. Something that this doctor has also discussed – and can support.

The physician explained the requirement as a terminal illness with a prognosis of less than 6-months. The challenge with prognosis with cancer is that many people live much longer than 6-months. My friend is not planning to die anytime soon, but she also knows that her situation could change at any point in time. If the chemo she is currently on stops working, and the next option doesn’t work either, she may not have a lot of time – and certainly not the time to figure out all the new legislation and how to jump through the different hoops on how to get it enacted – especially at a time when she will be wanting to spend her last months on earth with her family and friends – not managing multiple additional medical appointments. My friend also knows that if she stopped treatment (chemo) today, that it is highly likely that her cancer would consume her well before six months has passed. She is in no way naive about her body, nor is she unfamiliar with metastatic breast cancer progression.

One of the areas of concern for my friend was the 48-hour rule. In California, the medication must be used within 48-hours of being dispensed. This caused my friend great concern – worry about needing more than 48-hours to plan (she, like me, is a planner). The doctor emphasized that they would be available to support my friend – whenever the time got close. Also, that my friend could change her mind at any time – even after the medications have been prescribed and picked up. That it is totally her call, and that filling the prescription is not a requirement to take the prescription. The physician also explained that when we are nearing end of life, time slows down a lot. So, what may seem like a really short time (48-hours) when you are “healthy” and active, feels like a lot longer when you are close to end-of-life. That in the doctor’s experience, it does not feel rushed – but also, that if at the time my friend is feeling rushed, that she need not to worry. There is no magic 48-hour do or not clock – the physician is there to support the patient, and if a few more hours / days are needed, then they work through it. The reason for the 48-hour ‘time-limit’ is that the State does not want the medicine which hastens death to be ‘out there’ for any length of time. It needs to be closely controlled. It is not intended in any way to make the patient feel like they need to ‘use-it-or-loose-it’.

The appointment was tough. It was hard to hear my friend speak to her anxieties – to speak to her concerns, in a way that is very different than when we are talking. It is one thing to say it to a friend while walking in the woods, and a whole other to express it to your physician in the doctor’s office – it just is. It was especially hard to listen as my friend had to read aloud the declaration before she signed it, and before I could witness it.

It was an emotional day, but an important one … and one in which I am honoured to be the friend who was there to help. Hugs.