I’ve completely lost track of time, days and
appointments, given it has been almost 3 months since I last updated my blog. Mainly
because so much has happened since Chemo began to me, both physically and
mentally, that I have been unable to focus on anything else. It is amazing what
the body can endure physically if you are well mentally and vis versa. All
medical staff that I had contact with at the outset told me that my mental
attitude would affect my recovery and my blog today looks at the journey of
Chemo thus far. Mental health is so important, and I cannot thank Al anon
enough for the support they offer. It is there slogans that keep me balanced
and rational without getting to caught up in my own head or the stresses life
presents.
Chemo Brain and Body
Sometimes
it’s unknown
The
road life takes
Unfamiliar
with everything
You
have owned.
Sometimes
your patience
Wears
you thin
Unable
to carry
The
heavy load within.
Sometimes
your body
Turns
for the worst
And
organs scream
To
replenish the thirst.
Sometimes
the eyes
Are
blinded by fog
Grasping
to threads
As
faith is dislodged.
Sometime
the heart
Can
give no more
So
you dig deep
To
find a bit more.
By the beginning of June I had completed 2
sessions of Chemo and was still trying to resolve administrative issues
associated with moving. The plate is full and I can’t see the wood
from the trees. I try and deal with one thing at a time and each time hit a
brick wall. One of those brick walls was Scottish power with whom I had
accumulated a debt from my home in Devon. The thing is the debt wasn’t all mine
because I wasn’t even living there but I am responsible for the payment of it.
I call Scottish Power to set up a repayment plan. I explain about my illness
and the situation to the young man and why I have incurred the debt. I ask if
Scottish Power have any schemes to assist individuals like me who are diagnosed
with sudden illnesses. I had to repeat this several times because apparently,
he could not understand what I was asking. I then proceed to ask him what the
minimum payment Scottish power would accept as a monthly instalment plan and
that way I can make an informed decision about how much I can repay a month to
repay this debt. He informed me that Scottish Power did not offer instalment
plans and given I had used the energy why did I think I didn’t need to pay the
debt. I’m now at a loss and am struggling to think clearly now. I tell the
adviser I would like to make a complaint and he refuses to give me his name. He
then agrees that I can set up a repayment plan, some 45 minutes later and
starts to go through the process. He then puts me on hold, returns and tells me
the account has been closed and someone from the back room will contact me. He
hangs up. I was so upset given that morning Slough Council was a similar
experience and not to mention the fact that the landlord has not rectified
issues in the flat and the list goes on.
The
worst thing about this, is that it’s not over and I have to deal with this
another day and at the moment I have no energy what so ever to deal with
anything. So then come further upsets and challenges, all of which are a
learning curve. Why does any type of learning have to be difficult or at least
hard work?
I
go away with my friend to the coast, her sister and their friends, none of whom
I know very well. The chemo starts taking its toll on me and I am on the loo every
time I eat. To add insult to injury food had to be specific and at the moment it was
carbs and salty fatty food, specifically sausages and chips. I have eaten more
chips in the last few months that I did in the last decade. What I discovered
during this weekend away was my body was struggling with these chemicals which
was having a knock-on effect on my ability to think clearly or have confidence
in myself and therefore preventing me from being able to relay my needs to
anyone.
I
began to lose trust in myself my own confidence. Trust is a funny one. There
must be many people like me who have to rebuild their trust in themselves and
this is where supportive friends and family come in and mine have continually reminded
me of who I am and to not be so hard on myself as I am going through Chemo,
something I continually forget because I just want to get on with living. Friends
and family have given me opportunities to reflect my own thoughts and feelings
and perform checks and balances surrounding my own behaviour. So I have become
very aware of what is happening to me both physically and mentally. This means
I was able to take precautions very quickly when in July I felt utter despair.
There was a sudden change in mood and I couldn’t understand where it had come
from. Rather than work it out I got on to my GP and got myself on some
anti-depressants. I carry on going to work 2 days a week but then the locum
started on at me about my caseload and before I knew it I could feel this
intense pressure building up in my head. I realised that I needed to go home
and not be in this environment. So now I’m signed off sick again because the
pressure at work was too much to manage.
After
a few weeks I was due to return to work at the beginning of August and honestly,
I was looking forward to it because now I had had one weekly session of Taxol
and that was nothing like the red stuff. I could finally taste coffee again and
food was tasting nice. My friend took me for a roast and you know what it was
amazing, it was the most I had eaten in a long time. So just as things begin to
pick up and I start feeling more like myself something happened to my back and
my right leg. I went to bed Sunday night with an ache and by Monday morning I
was crippled with pain in my back and leg. Most of the leg had gone numb and I
was so worried due to the sudden onset. My friend drove over specially to take
me to the doctors who wanted to speak to my oncologist and get me in for some
scans. The reality being they were checking to see if the cancer had metastasised.
I was then booked on for an MRI and xray and an appointment with the oncologist,
who then arranged for me to be seen by the orthopaedic surgeon in the same day.
Anyhow I have 2 protruding disks on the left and the right. The right one has
hit the sciatic nerve which is affecting the sensation in my leg. So now I can’t
sit or drive and I can’t get back to work. So the GP signs me off for another
month. My Chemo was then delayed for a week because my white blood cells were
low and I was given a ton more medication.
Then
the weekly chemo’s continued, and I am due to have number 6 this week. So I now
dislike coffee again and most food tastes off. I went to my favourite
restaurant the other night feeling excited at the thought of eating this south Indian
food I had not tasted for 4 years. Lone behold it all tasted bland and
tasteless. I was so disappointed. My son told me though it was exactly as he
had remembered so it was me. Great!!
Added
to all of this mix has been the onset of menopause. I have had no periods since
my third cycle of the EC and I have had to endure the onset of hot flushes for
the past 4 weeks which means that I have been subjected to broken sleep every
night since. Seriously! If you haven’t got enough to deal with lets add sleep
deprivation to the list as well. My son said to me today that he did not think
that I would respond to treatment as well as I have and funny enough my
daughter told me the same thing last week. One of her friend’s mother is also
going through a similar journey and her body has reacted negatively to the
Chemo to the point she no longer wants to continue with the treatment. Despite
having Chemo brain, being bald, hot flushes, lack of sleep, numb leg, I still
feel fairly well mentally. Besides its not such a bad thing having to deal with
everything in one go then hopefully there will be less to deal with at a later
date or at least I hope there will be less. Just to clarify no one really
prepares you for the menopause so at the for the last 4 weeks its been fleece
on, fleece off all day long.
Let’s
not forget the blood tests because for the past 3 weeks every time they go in
to my vein no blood comes and the nurse jiggles the needle around a few times
to hit the vein. Well last Thursday the nurse put the needle in, couldn’t find
the vein so he jiggled it around a few times, eventually he hit the vein but
the blood only filled one tub and then stopped flowing when he attached the
second tube so then he takes the tube off and leaves the needle dangling while
he gets another tube. Still no blood. So now he takes the needle out of my arm
and puts a new one in. Again he does not hit a vein and has to jiggle the
needle around again. Finally he hit the vein and the tube filled. Afterwards he
says, are you ok’.
‘What
do you think’, is what I wanted to say but there was no point because all I
wanted to do was get out of the hospital. In case I haven’t explained
previously they are not allowed to take blood from the right arm so they go in
to the same vein in my left arm every week. Oh except for one week where she
had to go in to my hand and made it ache the whole day. Sometimes I just want
my body back and for everyone else to stop prodding it.
So
my Friday started with acupuncture at 8.30, this is supposed to help with the
hot flushes referred by the Oncologist before we try any other treatment. My
insurance company have done nothing but argue with me about the fact they believe
this to be a therapy and not a treatment and because I have used my therapies
budget on physiotherapy they will not pay for more than 4 sessions. They are
stipulating that acupuncture falls within the definition of therapy and not
treatment. You see if it fell within the definition of treatment then I could
have as many as I needed. The whole point of having private health insurance is
to be able to access treatment for these issues that are occurring because of
the cancer. So I need to look at the policy and challenge the definition. If acupuncture
is a therapy then why is chemotherapy not a therapy. That’s because I believe it’s
a treatment in the same way acupuncture for hot flushes is a treatment and if
it works it avoids the need to take medication. If I can’t find a way to manage
these symptoms I will not be able to function like a good capitalist citizen
and earn a living.
I
have more needles inserted in to my legs and feet this time. Ordinarily they
are not supposed to hurt but a couple of them do hurt, and one hurt when she
removed the needle. So it wouldn’t be surprising if I now developed a phobia of
needles. I feel it though now, the anxiety build up every time I go for a blood
test. After acupuncture I moved on to Chemo and then I left the hospital some 3
and half hours later to get to the Osteopath. Another therapy I have to pay for
just so that I help my back get back to a healthy state.
Essentially,
I am living in a state of limbo where I am completely powerless to all of these
external forces that are impacting on my ability to have any control over my
life what so ever. I tell myself most days all I can do is take control of the
things I am able to, to try and help myself the best I can. 2 more months and
this will be over!
Halfway
When
the chips are down
And
Life knocks you to the ground
What
do you do
Where
do you turn.
When
there is no more
No
more to give
The
body’s fucked off
And
so is the head.
When
the tubes have dried
And
veins are empty
The
muscles say no
They’ve
given plenty.
When
still you want more
And
more you’ll take
Despite
my tears,
Just
give me a break.
