I am going to try and remember the sequence of events around
my full diagnosis and prognosis. It won't make for happy reading. I
want to get this down in case anyone that is going through
something similar is reading this. I want cancer sufferers to know
that however desperate the situation may seem, there can be
happy endings. Now, I should say that as I write this, I have just passed my 4year anniversary in remission. I'm not therefore,
out of the woods, but I am as optimistic as I have ever been.
Despite having another year of 'my sentence' to serve, I consider
myself a survivor. I call it that because I feel like I have been
serving a sentence, waiting for 5 long years to pass, to get out.
Having said that, I have made the most of every single day whilst
inside!
Immediately after the confirmation day, I remember being in a bit of a haze. I had to wait 1 week until the following clinic at UCH, held every Tuesday. I think I was in shock initially. I recall trawling through every piece of information I could find on the Internet. I had seven days of trawling- bad idea. I read all the usual sites, obsessed with my chance of survival or should I say my chance of dying. I could quote exact statistics of survival odds for each type of cancer. I even read a full medical report from an American study which did not make for good reading. Basically, the lovely cervical cancer was a case of cure or kill. It didn't sound like there was much in between. To this day, I cannot believe I have had cancer. It isn't a case of 'why me', ' indeed 'why not me?' But when it was me, I simply cannot describe the shock and disbelief. And fear, deep dark fear, that never really goes away. I have now learnt that living with that fear is what requires the most courage of all.
Immediately after the confirmation day, I remember being in a bit of a haze. I had to wait 1 week until the following clinic at UCH, held every Tuesday. I think I was in shock initially. I recall trawling through every piece of information I could find on the Internet. I had seven days of trawling- bad idea. I read all the usual sites, obsessed with my chance of survival or should I say my chance of dying. I could quote exact statistics of survival odds for each type of cancer. I even read a full medical report from an American study which did not make for good reading. Basically, the lovely cervical cancer was a case of cure or kill. It didn't sound like there was much in between. To this day, I cannot believe I have had cancer. It isn't a case of 'why me', ' indeed 'why not me?' But when it was me, I simply cannot describe the shock and disbelief. And fear, deep dark fear, that never really goes away. I have now learnt that living with that fear is what requires the most courage of all.
I recall my first appointment. The first time I walked into the
Cancer Clinic. A beautiful building just a 2 minute walk from
Warren Street tube station. When I get on the Victoria line these
days, I feel sick as I pass through this stop on my way to Oxford
Street. I didn't feel like I belonged in this clinic with all these
patients. Looking around, some young, some old, some in
wheelchairs, some bald, some with horrendous wigs, some sons
and some daughters. That was hard. Most daughters were there
looking out for their mum, not the other way round. I'm sure that
was even harder for my mum. And then there was me. What the
hell was I doing here? Little did I know, right then, that I was
probably sicker than most. And so I learnt from Day 1 that my
appointment time was insignificant. The longer I waited at each
appointment, the more anxious I would become. I cannot tell you
how much I hated this clinic. It felt like a waiting room for the dead
to me. It wasn't, but that's how I felt. The all consuming fear.
So the first appointment wasn't that eventful. I wanted answers and guarantees but of course, I wasn't able to get them. Doctors cannot see into your body and they do not know how the cancer will behave. They can only provide a plan of action, based on medical research. So my immediate plan of action was an internal examination to assess the stage of disease. If it was 1a or 1b, confined to the cervix, it would be good. I could have a hysterectomy and 80% chance of survival.
I have to tell you at this stage, this couldn't have happened to a sorrier patient. I have the lowest pain threshold on the planet, am naturally predisposed to think about the worst and a deep rooted fear of anaesthetic. This definately did not help throughout my journey. I met Doctor McCormack, the lead consultant on the first session. Naively, I thought she would be with me throughout. I must have been seen by more than a dozen consultants throughout my treatment. This isn't a criticism. I credit the NHS and medical science with saving my life. It's just hard feeling that nobody knew me. I was simply an NHS patient with an NHS patient number and file. The number of times I watched doctors read my notes as I sat in the room, waiting to hear one fate or another. If only one of them had really known me, it might have eased the pain of each of those appointments.
So the first appointment wasn't that eventful. I wanted answers and guarantees but of course, I wasn't able to get them. Doctors cannot see into your body and they do not know how the cancer will behave. They can only provide a plan of action, based on medical research. So my immediate plan of action was an internal examination to assess the stage of disease. If it was 1a or 1b, confined to the cervix, it would be good. I could have a hysterectomy and 80% chance of survival.
I have to tell you at this stage, this couldn't have happened to a sorrier patient. I have the lowest pain threshold on the planet, am naturally predisposed to think about the worst and a deep rooted fear of anaesthetic. This definately did not help throughout my journey. I met Doctor McCormack, the lead consultant on the first session. Naively, I thought she would be with me throughout. I must have been seen by more than a dozen consultants throughout my treatment. This isn't a criticism. I credit the NHS and medical science with saving my life. It's just hard feeling that nobody knew me. I was simply an NHS patient with an NHS patient number and file. The number of times I watched doctors read my notes as I sat in the room, waiting to hear one fate or another. If only one of them had really known me, it might have eased the pain of each of those appointments.
So of course I decided that against their advise, I would have the procedure
under sedation. I did not want to be put to sleep. I checked into day care
hospital along with other patients. I recall talking to them. They were worried
about the outcome of their minor toe operations and so on. I felt again like I
was in the wrong place. No one here knew how bloody serious this was and
how terrified I was. I said goodbye to Paul as I was rolled into the theatre. I
was sedated. I begged them to make sure I stayed awake and I was in
control. They did. I remember it. I remember the doctor saying, 'it's not in the
bladder.'. I felt elated- this must be good. I remember asking what stage it
was. 2B. 2B? I think she said 2B. I couldn't remember what that meant in my
sedation. I didn't think it was good. No it wasn't good. That meant it was out
of the cervix. Spread. Odds? A lot less. I came up to the ward and waited for
a consultant to explain, And waited. And waited. And waited some more
whilst all the toe consultants visited their patients. And then lost it.
I went mad at the nurse on call. Everyone else had seen a doctor about their ailing limbs and I was dying and no one could be bothered to see me. I was beyond terrified and I needed help. Eventually, a McMillan nurse arrived. She took me to a private room and explained best she could. And calmed me best she could. But she couldn't tell me it was going to be OK. No one could. Get me the fuck out of here and home to my baby. The single only comfort and survival tool I had.
So then another Tuesday clinic. I think the odds had moved to 65%. Still ok right? Given the stage of my cancer, it was decided that I should have both an MRI and a lymph node dissection. The MRI was horrible and scary and lonely. Injections, left alone in the room and claustrophobic being shunted into the doom of the overwhelming machinery. All the while wondering what the technician could see on screen. I was desperate to ask them. Did you see any big tumours? Am I dying? But I stopped myself, gained composure and left.
Another Tuesday clinic. We had another setback. The MRI had shown fluid on the lining of my heart. Really? FFS. What did that mean? It could be something or nothing. The nothing was viral. The something was it had spread to my heart. That would be 'surprising' apparently. Reassuring, not! Surprising!!!!! I was exploding inside. I'm not sure how I kept it together. how much more bad news ? (If only that had been the end). I was rushed off to a specialist heart hospital to have an echo scan. I begged the poor technician to tell me what he saw. He said it didn't look too bad. I just didn't know what to think anymore.
Back to the waiting room clinic. Apparently, the heart looked ok. So current diagnosis- it was border line 2b and 3a given it was on the wall of my pancreas. But that didn't make any difference to the treatment plan. At this point, I was due for 6 weeks of daily radiotherapy plus weekly chemotherapy. One last hurdle before treatment could start, the lymphatic dissection. This involved removing lymph nodes throughout my body to test for any cancer cells that were not visible in the scan. And worse of all, despite my pleading, they had to put me to sleep.
I went mad at the nurse on call. Everyone else had seen a doctor about their ailing limbs and I was dying and no one could be bothered to see me. I was beyond terrified and I needed help. Eventually, a McMillan nurse arrived. She took me to a private room and explained best she could. And calmed me best she could. But she couldn't tell me it was going to be OK. No one could. Get me the fuck out of here and home to my baby. The single only comfort and survival tool I had.
So then another Tuesday clinic. I think the odds had moved to 65%. Still ok right? Given the stage of my cancer, it was decided that I should have both an MRI and a lymph node dissection. The MRI was horrible and scary and lonely. Injections, left alone in the room and claustrophobic being shunted into the doom of the overwhelming machinery. All the while wondering what the technician could see on screen. I was desperate to ask them. Did you see any big tumours? Am I dying? But I stopped myself, gained composure and left.
Another Tuesday clinic. We had another setback. The MRI had shown fluid on the lining of my heart. Really? FFS. What did that mean? It could be something or nothing. The nothing was viral. The something was it had spread to my heart. That would be 'surprising' apparently. Reassuring, not! Surprising!!!!! I was exploding inside. I'm not sure how I kept it together. how much more bad news ? (If only that had been the end). I was rushed off to a specialist heart hospital to have an echo scan. I begged the poor technician to tell me what he saw. He said it didn't look too bad. I just didn't know what to think anymore.
Back to the waiting room clinic. Apparently, the heart looked ok. So current diagnosis- it was border line 2b and 3a given it was on the wall of my pancreas. But that didn't make any difference to the treatment plan. At this point, I was due for 6 weeks of daily radiotherapy plus weekly chemotherapy. One last hurdle before treatment could start, the lymphatic dissection. This involved removing lymph nodes throughout my body to test for any cancer cells that were not visible in the scan. And worse of all, despite my pleading, they had to put me to sleep.
I think I checked into UCH for this but I can't remember. I was told
it was just for extra insurance it hadn't spread. I had a panic attack
as they put the lethal injection in me to put me to sleep. When you
think you might die and your life is out of your control, being put to
sleep is scary. Really really scary. My god, I was scared. I did
wake up and I remember feeling relief. Short lived though as I
remembered the life and reality of what I was waking up to.
So, there was no follow up to this procedure. The next step was to go and get tattooed for radiotherapy. This involved something very technical which included marking my body to signal where the radiation would target. I still have my 3 tattoos marking the area. The radiotherapy unit at UCH is in the basement. It's dangerous and it felt like I was entering an isolation unit every time I went down.
The next bit is the worse of all. In my heart, I knew my cancer had spread. I don't know why I knew but I did. I asked to see a doctor as I hadn't seen the results of my lymph dissection. It was all a bit chaotic from there. There wasn't any consultants on site so I had to wait for an age for someone to come deliver the results. Another room, another consultant. And yes, it had spread. It was found in 5 of the 10 nodes they had removed from around my body. The odds. Less. A lot less. 30%. Devastation. I remember physically trying to stop myself from passing out. And I remember not wanting to tell my mum and dad. And I remember Paul looking hopeless but did not wobble. I had told him from the start he wasn't allowed to. And he kept that promise throughout. Paul deserves a whole chapter and that will come later.
So, the next appointment. I remember two things;
1. There was a stranger in the room. A medical student intruding in the worst moment of my life. Piss off!
So, there was no follow up to this procedure. The next step was to go and get tattooed for radiotherapy. This involved something very technical which included marking my body to signal where the radiation would target. I still have my 3 tattoos marking the area. The radiotherapy unit at UCH is in the basement. It's dangerous and it felt like I was entering an isolation unit every time I went down.
The next bit is the worse of all. In my heart, I knew my cancer had spread. I don't know why I knew but I did. I asked to see a doctor as I hadn't seen the results of my lymph dissection. It was all a bit chaotic from there. There wasn't any consultants on site so I had to wait for an age for someone to come deliver the results. Another room, another consultant. And yes, it had spread. It was found in 5 of the 10 nodes they had removed from around my body. The odds. Less. A lot less. 30%. Devastation. I remember physically trying to stop myself from passing out. And I remember not wanting to tell my mum and dad. And I remember Paul looking hopeless but did not wobble. I had told him from the start he wasn't allowed to. And he kept that promise throughout. Paul deserves a whole chapter and that will come later.
So, the next appointment. I remember two things;
1. There was a stranger in the room. A medical student intruding in the worst moment of my life. Piss off!
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