So today's appointment is sort of a check-in to see how you're doing. See if
we can help with some of the symptoms you're having and also to talk to you
about what's coming next. You're about halfway through your treatment now.
You've got about three more weeks of the chemo and radiation to go and one of the
most important things to know is that you have to have enough chemo pills to
get you to that last day of radiation. So if you could go home and count up your
pills. Make sure you have enough to get to that last day. If you're missing any
because there might have been a holiday in there at some point, just give me a
call. Just leave a message on my voicemail and say I need one extra day, I
need two extra days. Whatever it is. I put it in electronically to the pharmacy and
then you can pick it up in a day or two. Things to remember. The radiation and the
chemotherapy end on the same day. It's important that you have enough
chemotherapy pills to get to that last day of radiation. If you count up your
pills and find that you're short, please call the CNS nurse practitioner and she
can prescribe an additional amount of pills for you. You'll be asked to go to
the Odette lab every week until you finish your radiation treatment. The CNS
nurse practitioner will follow along with the labs and call you if there are
any concerns. So once you finish your treatment there's gonna be a break. Both
things stop in the same day and then you have about a six to eight week break of
no appointments, no treatments. So it's what I call your rest and recovery time.
So this is the time that you actually start to feel your worst and people
don't understand that because you're done with the radiation and you think
okay I'm done with my treatment I'm going to start feeling better. But
actually the effects of the radiation peak about a month after the radiation
is done. So that's when you start to feel more tired. That's when things get more
difficult in terms of thoughts, memories, movement. Everything just slows down a
little bit. It is similar to having a concussion because all of the radiation
causes swelling in the brain, similar to a concussion having
some pressure on your brain. So that's one of the reasons we use the steroids
because the steroids reduce some of that swelling and make you feel a little bit more like
yourself. A little brighter and more alert. The effects of the radiation peak
about a month after the radiation is finished. You might feel more tired or
more confused. You might have more difficulty doing your own daily routines
like your personal care. You also might have difficulty with your memory, your
thinking or your speech. Sometimes you can have more headaches as well. This is
all very normal and part of the expected effects of the radiation and
chemotherapy treatment. Over time it will get better on its own. Now might not be a
good time to take a vacation then? Yeah, unfortunately a lot of people think
because I've got this break this window of time without treatment it might be a
good time to go away. You're gonna be pretty tired during that time. It's not a
recommended time to go on a big vacation, because we know that you'll be tired we
know that things will be difficult for you. There potentially could be some
more difficult times where you require hospitalization. It's unusual but
it may happen. So to be far away from home isn't a great idea at that point. So
if you're at home during this break and you're really finding that things are
difficult or having trouble getting up in the morning or having trouble getting
yourself dressed and bathed and getting to the toilet, just give me a call. We
can make a referral to a homecare agency like CCAC and we can maybe get some
people into the house that might be able to help you with some of your physical
care. If you or your family are concerned about how you're managing at home or
you're becoming so sleepy you can't get out of bed or getting very confused,
please call the CNS nurse practitioner to report your symptoms. Sometimes it can
be managed easily by increasing your steroid dose. Sometimes you may need
services in the home to help you with your care. You can call the nurse
practitioner or the social worker with the CNS team to discuss the symptoms and
we can make a referral to a home care service such as CCAC.
So what will happen after the 6 to 8 weeks? What's the step after that?
Once you're finished, once you have that rest and recovery time, then you're gonna have
an MRI which I'm going to ask for today but it takes about a month to book so
someone will be calling you with that appointment and then you'll have within
a week you'll have an appointment with your neuro oncologist and then we'll
talk about what the next steps are going to be. One of the things that people
really worry about is that MRI and what it's going to show. A lot of times
that MRI is still reflective of a lot of swelling in the brain from the radiation
so it's not that clear from that scan what's happening. What we really go by is
how you're feeling. So if you're feeling better, your energy and your
strength are coming back, and you're feeling more like yourself, we're likely
just going to go ahead with the next phase of treatment even regardless of
what that MRI shows. So I'm not a hundred percent sure I'm going to be here for
the MRI. I'm gonna try really hard. Would it be okay for him to come on his own?
That's actually an appointment that
would be important for you to bring somebody with you, because you'll get a
lot of information that day about the scan results as well as what the next
treatment plan is going to be so I think it would be really important that
someone be with you to kind of be your second set of ears for that
appointment. At the follow-up appointment with a neuro-oncologist
we'll check in to see how you're doing and see if it's appropriate to continue
with chemotherapy. If so we'll prescribe the same medication, the Temozolomide,
but instead of taking it every day like you do with the radiation, you'll take it
five days a month like a Monday through Friday. Each month you'll come to the
cancer center, you'll have blood drawn, you'll see either the nurse practitioner
or the neuro-oncologist and we'll prescribe medication for you. You go home
and take it and a month later you come back and we do this again. We do this six
months in a row, following along with MRIs every other month.
Another thing I wanted to bring up was a concept called advanced care planning.
It's an initiative we have in the hospital here at Sunnybrook. It's
something I talk to all of my patients about so I don't want you to feel that
I'm signaling you out for any reason. Advance care planning is an opportunity
for you to think about the future and a time when you may not be able to make
decisions for yourself - medical decisions for yourself - and thinking about somebody
who can make those decisions on your behalf.
That person we call a substitute decision-maker
and that's the person who if you're not able to make a medical decision would do
that for you. What's really important about that substitute decision-maker is
usually it's a family member a spouse or a son or daughter or parent but what's
important is that they really understand what your goals and values are for your
medical care. That's something they would only know by having conversations
with you and really understanding. A lot of times couples come in and they say
we've had that conversation we know what we would do for each other but most
people to be honest don't talk about that. So what I'd like to do is give you
a workbook that kind of helps you to have some conversations. The work book
talks about advanced care planning talks about what the concept is and what
the goals are and what I liked about this workbook is in the back it has a
little section that prompts a conversation between you and your
substitute decision-maker that helps to bring out what some of your goals and
values are for your care going forward. So what's really important is that your
substitute decision-maker understands what you want to be done and they feel
like they're able to do right by you so it's really important to have these
conversations. It's not something you have to do right away, it's not an urgent
situation, but over the course of the next few months it's something to start
thinking about. It's also something we'll help you with so as we go forward if you
have some conversations and questions come up please feel free to
come back and talk to me about them and we can go through it together. This
is an ongoing conversation that we'll be having
with you over time. I gave you this the first time I
met you - this little care map of where we're going. Right now we're on step 4
this nurse practitioner appointment and step 5 is getting the weekly blood work
which you've started today, you had your blood work before you came
in to see me and then you'll do it each week until you're done with your
radiation. You should have an end date for your chemo and radiation and again
making sure that you have enough of the chemo pills to get you there and then as
I said about six to eight weeks later you'll have your MRI and your follow-up
appointment with the neuro-oncologist. My name and phone number are in the back
here any questions that come up please feel free to call me. Anything about
appointments you can call this number here. We're
here to help you and your family through this difficult time
please feel free to reach out to the nurse practitioner or the nurse line
whenever you have a question or concern.