Video summary
A diagnosis of myeloma often triggers a complex range of intense emotions immediately upon discovery, with shock being the most common initial reaction due to the unexpected nature of receiving a cancer diagnosis. This distressing period can also encompass feelings such as anger, disbelief, sadness, and grief, alongside a persistent fear regarding survival that affects not only patients but their caregivers as well. While these powerful emotional responses are part of the natural initial phase following any related disease diagnosis, they tend to gradually fade over time as individuals find stability within their new reality; however, acknowledging this challenging life event is crucial for understanding the need for early intervention and support from the very beginning.
To navigate this difficult journey effectively, patients and caregivers should recognize that emotional support provides significant benefits starting immediately after diagnosis. The foundation of this support system typically rests with friends and family, who offer a fundamental layer of comfort, yet there are specific indicators suggesting when additional specialist assistance is necessary. If distress becomes severe enough to interfere with daily functioning or hinders the ability to make treatment decisions and engage in therapy, it signals a need for extra help beyond personal networks. This enhanced support can come from medical teams providing clarity on information and reassurance regarding treatment plans, as well as psychological professionals who offer specialized counseling services available at some centers.
Beyond clinical interventions, there has been substantial growth over the last two decades in the variety of resources accessible to patients, particularly through non-profit patient support organizations that provide online groups, webinars, and forums where individuals can share experiences without feeling alone. These communities play a vital role by offering guidance from others who have walked similar paths and reinforcing the message that things can improve. Maintaining mental health also involves staying connected to meaningful aspects of life, such as spending time with loved ones or pursuing hobbies, while establishing routines and daily goals helps create structure even when modifications are necessary due to illness.
Practical strategies for managing emotional well-being include engaging in gentle physical activity if physically possible, which has proven benefits for mood and anxiety, alongside learning soothing relaxation techniques like breathing exercises or meditation that can be practiced during overwhelming moments. It is equally important not to fear one's emotions but rather to understand them without trying to push them away, as resisting feelings often amplifies their intensity. By normalizing experiences such as feeling sad on a particular day and focusing on actionable steps for the present moment rather than worrying about distant future events, individuals can better manage their mental health and find ways to feel good today despite uncertainties tomorrow.
Read the full video transcript
A diagnosis of myeloma can generate lots
of really strong and intense emotions at
the start, which includes the first one
that's very common is shock because
people are not expecting to be told that
they have a cancer.
Um and it can be very distressing for
people and I would say that lots of
strong emotions like shock, anger,
disbelief even can be there for people
at the start, sadness, grief.
Um something that still happens a lot is
when you get a cancer diagnosis of any
kind, the mind goes to how long am I
going to survive? And then through
reassurance from the medical team or
through treatment, you might be able to
be feel confident that your quality you
can still have good quality of life and
but that fear of death can be there for
people right from the start as well. And
all of those feelings are there for not
just the patient but their caregiver as
well.
Uh they do fade as as time passes and as
they find their feet within the
diagnosis, but all of that is part of
the initial phase of being diagnosed
with myeloma and any related diseases.
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I would say that patients and carers
should know that they will benefit from
emotional support
from the start because it's a
challenging life event. What that
support looks like can be different. A
lot of the times people use their
friends and family for emotional support
and that's I think I think the most
fundamental layer of support that
everybody accesses and benefits from.
Other than that, I would say that, you
know, if you're feeling distressed so
much so that it's either interfering
with your ability to function in your
day-to-day life or if it's interfering
with your ability to think about
treatments and make decisions about
treatment or engage with treatment, then
I think those are two key indicators
that mean that you could benefit from
some specialist support, which might be
your medical more more conversations
with your medical team or it might be
conversations with a psychological
professional, but those are kind of key
indicators that people might need an
extra layer of support beyond what their
friends and family might be able to
offer.
I think what's really great to see in
the last 10-20 years is a real growth in
the amount and variety of support that
people can access. Again, I always like
to emphasize that the first layer of
support that patients and families need
is from their medical and clinical teams
because information, reassurance, and a
treatment plan are three things that
really help with patient and carer
distress and having clarity about those
things.
>> [music]
>> Beyond that, I I always signpost people
to patient support organizations that
are usually non-profit organizations
that have different types of support,
you know, online support groups, [music]
webinars, even forums where people can
share questions and experiences and
learn from and kind of know that they're
not alone.
Um that's the other layer of support.
Some centers have access to either
in-house or related, you know, attached
psychological therapy services,
counseling services. So, I think it's
kind of like a multi-layered
uh support system around the patient or
caregiver, and people might need
different things at different times, but
I'm a big advocate for patient support
organizations because
there's nothing like having a community
of people around you who've been through
what you've been through and who can
give you guidance and reassure you that
>> [music]
>> things can be okay.
Continuing to stay connected to what
makes your life meaningful, whether
that's time with your family or your
friends, whether that's a particular
hobby that makes you feel like yourself.
Um doing having routines, having daily
goals, regardless of what else might be
happening. You might have to modify
those goals, but I think structure and
routine really helps with mental health.
Gentle exercise or more physical
activity if you're if you're physically
able to manage it has been proven to
have huge benefits for mood and anxiety
as well.
Um, I think learning soothing
strategies, learning a few relaxation
techniques that you can use in those
moments that might you might feel
overwhelmed because those moments happen
to all of us. That can be really helpful
as well. So, just having those in your
back pocket, practicing them when you're
feeling okay so that they're easy to
practice when you're not feeling okay,
like a breathing technique or a
meditation exercise, all of those things
can help as well.
Um, I think it's very important to not
be afraid of our emotions. I'm a big
advocate that understanding why we feel
the feelings we feel and not being
afraid of them or trying to push them
away is really helpful, too, because
when we struggle against our emotions,
it amplifies them. So, kind of just
normalizing and validating your
experience that I'm feeling sad today or
I'm feeling a bit blue,
and then focusing on what you can do in
the here and now. What can I do today?
I'm worried about what's going to happen
tomorrow or next week or next year, but
what can I do today that's going to make
me feel good today?
>> [music]