Gosh it's a long time since I wrote anything for my Blog.
Three weeks ago I was told
that I have cancer! Yes me… it can happen to anyone and it seems it is my time
to fight it after twenty years working with people with cancer. Some days it
seems so surreal but the reality is that it is happening and it is happening to
me and my loved ones.
I knew during the winter
months last year that I was starting to have problems. I had been dieting from
March and lost three stones over about seven months and had felt very well but
come November I was starting to notice subtle changes. Over a about a two month
period, each week that I saw my diet Consultant I told her that I felt bloated
and as if it was that time of the month plus was struggling to go to the loo
and lower back pain radiating into my groins. I stopped losing weight despite
keeping to the diet and started to feel something was not quite right. Just
before Yuletide I was woken in the night with quite severe uterine pain which
felt like the most intense period pain I had ever experienced and it took a
long time to go away. In hindsight this was to potentially save my life as it prompted
me into action. I saw my GP the following day who felt sure that my symptoms
were associated with an irregular menstrual cycle given that I was starting the
menopause. At first she wondered if it was necessary to investigate further
given only one episode of pain but because I knew my own body and felt
intuitively that something was not right she arranged a scan. It was Christmas
and New Year time so there was a delay with the scan but mid January I went for
an Ultra-sound and trans-Vaginal Scan which revealed an Ovarian Cyst. A routine
blood test was taken which revealed my CA125 was raised. This was the point
where I felt very much that my intuition was right because the CA125 is an
Ovarian Cancer marker and something I use in my work to assess patient’s
disease progression. But as everyone kept telling me it is not always accurate
and can be indicative of other issues such as a Haemorrhagic Ovarian Cyst.
Despite this I knew deep down what the score was.
I couldn’t continue to work
that day after being given this news! Everything within me was screaming with alarm
bells even though people around me were giving reassurances that it would be
all ok. Instead I walked around the supermarket gathering ingredients to bake a
cake, something that became a coping strategy as time went on. I bumped into
friends in the supermarket with their little one and talked normally to them
but all the time I felt in a daze. Everything around me became larger than life
and I viewed it with a greater clarity. The greenness of the Tor as I drove
home, the blueness of the sky, peoples faces, it all took on a depth that I
can’t explain as if I was stepping over the threshold into a different world
and as if I was having an outer body experience. Inside I felt scared because I
might have cancer but at the same time I wanted to believe it was all going to
be OK like many kept saying it would be.
I was fast-tracked through
the Gynaecology system whereby the Gynaecologist reassured me that it was an Ovarian
Cyst and that he was very positive that this was not malignant. He listened to
what I had to say about my symptoms and told me that they did not match what he
saw clinically because the Cyst was not that big. He said he would remove the
affected Ovary because I was concerned about it, which was arranged for just a
couple of week’s time. I relayed the good news to family and friends that the
Specialist thought I was OK and that it was an Ovarian Cyst and that all would
be well. Most people around me accepted this with relief and despite my worries
I tried to believe what the Specialist said. I felt like maybe I was imagining
my symptoms but I knew my body better than he did and I truly did not share his
optimism.
The two weeks leading up to
surgery was a real trial because so many seemed to have a story to share, many them
seemed not to be taking my situation very seriously and I started to feel that
people thought that I was being over dramatic. Maybe they just couldn’t handle
the news themselves, I don’t know but it felt hurtful not to be heard. On the
flip side I had amazing support from so many others including beautiful magical
friends in America who sent energy to me and to Simon to help us get through
the surgery. I continued to work until the eve of my operation and managed my
patient caseload so that they all knew I would be away for a while.
I went in to Hospital on
February 18th expecting to go home on the same day. Coming round
from the anaesthetic I knew automatically that things had not gone to plan
because I was on Oxygen, had a drip and a catheter insitu and was kept in over
night. No one seemed to be able to tell me anything though so that proved to be
a long night of wondering.
The next day was life
changing and the beginning of a roller coaster journey for me and all those
closest to me. The Specialist came to see me and I could tell by the look on
his face there was bad news coming my way. Behind a curtain in a six bedded
ward he proceeded to tell me what his findings were and that he had removed
both Ovaries with “masses” attached to them which he thought was cancer. I
could see he was visibly shocked by his findings and he was apologising to me
constantly as he had been certain it was going to be all OK. I found myself
trying to reassure him that he wasn’t to know this would happen. In fact I
reverted back to Professional mode and spoke as if it was a patient he was
talking about and not me…. I felt for him! He told me what would happen and
that he would phone me with the pathology results next week. He opened the curtain
screens to reveal faces of empathy trying not to look at me but clearly the
other ladies had heard what was said. With tears welling in my eyes I thanked
him and he left me to it. Why we thank people for telling us the shittiest news
ever is beyond me. Patients do that to me all the time. I wanted to cry after
he left but I couldn’t. My Mum and Sister arrived shortly after to take me home
so I had to tell them the news. The tears weren’t there until I said to them that
I didn’t know how I would tell my son, Sam.
The following week I was
contacted by the Gynae Oncology Nurse Specialist who asked me to see my
Gynaecologist the next day. If all had been well I knew he wouldn’t have wanted
to see me as he’d said he would phone. I went the next day and was told very
gently that I have stage 2C Ovarian Cancer and would need more surgery and
chemotherapy as the cancer is no longer confined to the Ovaries. I sat there
taking it all in and I can honestly say that I wasn’t shocked, but felt more
relieved to know now that I had not been imagining my symptoms and that I had a
label for “this thing”. . I reverted back to professional mode again and felt very
calm, asking questions about what now as though it wasn’t me we were talking
about really.
Though my emotions are up
and down the worst thing about all of this is the hurt it is causing those I
love. Seeing my Mum break down in the Hospital, hearing Sam sobbing his heart
out in his room terrified at losing me because there’s only ever been him and
me, holding my partner Simon tightly in my arms as we sob because we have only
really just found each other and the thought of possibly our dreams being torn
apart just too painful to bear, hearing my Dad’s voice quivering as he tries to
control his shock. It breaks my heart and there’s nothing I can do to lessen
their hurt. This wretched disease is never just about the person who has it.
For me now this is the
greatest challenge of my life but also my greatest teaching. With twenty odd
years working in Palliative Care I realise how much my patients have taught me
and because of them I am equipped to deal with what is a life threatening
disease. I can’t begin to tell you how grateful I am to all of those amazing
people and I am rising to the challenge and ready to battle. Coping with
uncertainty is very difficult as we are no longer able to think too far ahead
and being someone who likes to plan and be in control, this is proving to be a
real challenge.
The next step was the CT
scan which was not the most pleasant of experiences and one that will stay with
me always. I felt unwell that day and very emotional when I saw the Macmillan
Cancer Unit. Despite this I had to go with the flow of things and just let
people stick needles in me and control my body like it didn’t really belong to
me anymore. I have sent so many patients for CT scans and I felt suddenly very
uncaring by my lack of empathy for what it’s really like to have unpleasant
investigations when you feel so unwell. The CT scan was needed to assess whether
the cancer had spread to any of my other organs. The wait for the results of
this was almost too much to bear at times and probably the most scary part of
this so far. I saw the Gynae Oncology Consultant last week who was very
thorough and was keen to operate further to remove the Uterus, Omentum, Lymph
nodes and any other sign of disease visible. Debaulking he called it which in
effect is a clearing out of all cancer to give the chemo a better chance of
mopping up what is left. He provisionally booked the date for surgery for 11th
March but after discussion with the Oncology Team the next day I was told that
they favoured waiting for the pathology which was expected from London very
soon. This is because the surgery would be very extensive and it may be better
to have chemo first then surgery. Back to waiting again and probably something
that everyone in my position finds difficult!
To finish this first Blog
about my Cancer experience I want to say to ALL women out there to be vigilant
and to know your own bodies! You know your body better than anyone else; you
know your cycle and your usual patterns. Please don’t delay seeking advice from
your GP because it could save your life believe me. If you have a collection of
any of the symptoms like I had of bloating, increasing fatigue, constipation, lower
back pain, needing to wee frequently, a feeling of fullness when eating,
uterine pain and irregular menstrual cycle don’t ignore them. The least you
should expect is an Ultra Sound scan and a blood test to check your C125. Don’t
settle for anything less ladies!
