Let me start at the beginning though. For months now my gallbladder has been playing me up. Having had a referral from my GP, after I caved in and saw him after a particularly bad attack, a scan revealed that I had gallstones. No big surprise there. It meant I was eligible to be referred for surgery at last. Two years prior the damn gallbladder had been playing me up, but a scan revealed no stones, and in fairness it all settled down again... until now.
I was in for a three months wait to see the surgical team to discuss surgery. Three months turned into four, as they kept rescheduling the appointment, and in the meantime my gall bladder grumbled on. I had good and bad days, but the attacks, usually at night became more frequent in that time.
And much, much more painful. Now, I can DO pain. I've had nine babies all natural, one of them a twelve pounder at home, with no pain relief whatsoever, but this pain...
I was prescribed codeine and Buscopan to take as well as over the counter pain meds, which did help to a point, until what shall from now on be called that fateful Thursday (20th September).
The pains started the day before, well I had them all week on and off, but they really started to bother me lunchtime on the Wednesday. I recall driving into work and clutching the steering wheel through a white knuckled grip while doing breathing exercises to cope with the waves of pain. I actually sat in the car park at work and took some codeine, which I don't normally take during the day as it makes me so sleepy, but there was no way I'd have made it through my shift otherwise. My colleagues took one look at me and ordered me to sit down behind the counter.
I work as a receptionist at my local Vets and we normally stand, but, yeah, that wasn't happening.
I somehow made it through my shift, got home, donned two more Codeine tablets and fell asleep. It was a rough night, during which I dosed up some more and felt briefly okish when I eventually woke up. That's until I ate some toast and within half an hour I was writhing in agony. I can't even begin to describe the pain to you.. I couldn't stand up straight, couldn't sit, couldn't find any remotely comfortable position tbh other than curled into a tight ball. Like I said I can DO pain, but this... I couldn't even breathe properly, gasped for air, and phoned my work in tears to say I had to go A&E, as I couldn't cope with the pain.
Work was and remains brilliant by the way. I love those guys, and I miss them and can't wait until I can get back to them.
Anyhoo, phone calls to my hubby and the emergency services followed, as I couldn't move by then. The wait time for an ambulance was at least two hours tops (There's NHS cutbacks for you!) and as we live five minutes away from the hospital it was decided I would take a taxi in with hubby, so that I could get some proper pain relief.
By this time I was sweaty and flushed, and as I found out on admission was showing signs of jaundice. My pee, when I had to give a sample was also the colour of dark tea. TMI I know, but it's not a good sign, as we found out.
Anyhoo, a forty-five minute wait sitting in the waiting room at A&E followed, not that I kept score of the time. I was too busy crying and trying not to scream with the pain holding me in its grip. A complaint from my wonderful hubby later I was finally seen by triage and spirited straight through the system to be given this wonderful attachment.
A cannula is your friend in these circumstances, I tell you. Blessed IV morphine followed, and I could finally relax from the pain.
I was exhausted at this point and floating in and out of a morphine induced sleep. I was wheeled into X-Ray on my bed (one of the first many surreal experiences, I tell you,) for a chest X-Ray as they were concerned about my breathing, but thankfully that came back all clear. A bed was found for me on the surgical admissions unit, and hubby eventually left to get me some supplies for staying in hospital awaiting more tests. I was on a fluid drip by then and still floating in and out sleep, as they kept me topped up on Iv pain meds.
I do vividly recall a doctor waking me up in the middle of the night to tell me that my blood test results indicated I had developed Pancreatitis, and that I was on clear fluids only for at least 24 hours to give the Pancreas a chance to settle down and rest.
This was a complication of my gallstones but not to worry, it would settle down in time. I would need an MRCP to establish if I had any gallstones blocking my bile duct, as that was the prime cause of pancreatitis.
I was moved to ward 22 that night, the first of many moves, all on that ward, as they were so short of beds. It was funny up to a point. By the fourth move I burst into tears on them, as I was feeling like crap at that point and it all got on top of me. Hubby had to come in to calm me down and, thankfully, I wasn't moved again after that.
Anyhoo, that was the start of my three week hospital stay of daily blood tests, daily injections and simply put PAIN. So much damn pain which stumped the doctors, because even once the Pancreas settled down the pain continued. The first indication that something was seriously wrong with me. It's never good when doctors scratch their head and mumble, "She's on HOW much pain relief?"
Several attempts to get me to eat were abandoned because the pain was just too much and I was now throwing up with it all. Anti sickness meds were then added to my daily meds round, and they are a godsend I tell you.
In the meantime the MRCP showed a I had a gallstone lodged in my bile duct, which was dilated, and I would need an ERCP to blast that stone away. The MRCP also picked up a suspicious looking lump next to my Aorta, the first indication that something more serious was going on and in my mind the ugly C word reared its head.
A CT scan followed which showed that the lymph nodes clustered around my aorta and the left side of my stomach were grossly enlarged plus one in my neck just behind my collar bone.
Thats when several consultants paid me a visit and agreed that the gallstones weren't the problem here. My pain was coming from the enlarged lymph nodes pressing on my internal organs.
I needed a biopsy of that node in my neck to establish nothing sinister was going on. It was also the time the pain management team paid me a visit and I was put on long acting Morphine and finally my pain levels went down from a constant 9-10 on the pain scale to a 3-4. Blessed relief.
Once I could think coherently I pinned my consultant down and demanded to know what he thought it was most likely was and he said Lymphoma.
Ok, then, horrible news but that's easily treatable so let's not panic yet.
Fast forward to the ERCP which, of course wasn't straight forward either. I needed a stent put into my bile duct as they nicked the pancreas (one of the complications that can happen) aggravating it all again. Cue my pain levels shot back up to 9-10. My morphine was increased and the other meds were tweaked yet again until I was back down to a steady 3.
Relief, at last. I should add here, that I managed to lose 6% of my overall body weight in that first week in the hospital, so yet more alarm bells started ringing with everyone.
A Biopsy, performed under local anaesthetic followed by my bedside, another surreal experience.
On the Saturday 6th October, one of our son's birthdays of all days, a somber looking registrar delivered the news that my biopsy results were back.
Metastatic adenocarcinoma, which meant an aggressive cancer located somewhere in my bowel/stomach area.
And just like that my life stopped. It was at least grade 2, possibly more as it had spread to the lymph nodes and I would need further tests to find the primary cancer.
I made her speak to hubby on the phone, as I knew I couldn't relate that information without bursting into tears, and that is exactly what I did. Hells bells I made Sister cry, because all I kept saying was... "I can beat, this, right? I have to beat this. I have to, my youngest is only seven. This can't be happening."
I shan't bore you with the onslaught of emotions I went through. We all went through and continue to do so on a daily basis as a family.
I mean how DO you deal with a cancer diagnosis? HOW?
Well, the horrible truth of it is that you don't get a choice in the matter. You just have to deal with it, one step and one day at the time, especially when the hits keep on coming.
Further tests involved a gastroscopy and a colonoscopy, which both failed to pick up the primary cancer. I have a cyst on my lower left side of my liver, but it seems benign, and they took some biopsies from a spot in my stomach, which also looked benign, but the biopsies will tell for sure.
My consultant remains baffled, as the main indicator remains my levels of hugely raised Amylase and CA199 markers, which should suggest it's my liver and/or Pancreas which are the primary cancer.
Having done some extensive research of my own since leaving the hospital, all signs point to Pancreatic Cancer. I shall be very happy to be corrected on that front, of course, but yeah...
*insert more swearwords of your choice here*
The statistics are abysmal, but you know what. I refuse to be a statistic and I WILL beat this, whatever it turns out to be, because anything else just isn't happening. No, Siree, not on my watch. I have too much to live for, too much to do and my family needs me.
There is this to look forward to for starters.
Our first grand baby is arriving in April and I can't wait to become an Omi. Cancer can just go and fuck right the fuck off. I'll fight this with very breath in me and then some.
Let me take a moment hear to say thank you to all my family, friends and readers who've reached out to me. I am humbled by the amount of love and support I have received. You all boyed up my spirits while I was still in hospital and continue to do so now that I'm home.
I still haven't got a definite diagnosis or treatment plan. There is an MDT meeting on Tuesday to discuss my case and I have a another CT scan booked on Thursday to check on that stent they put in. I'll most likely see my consultant in clinic this week too to discuss the outcome of that meeting and how best to proceed.
In good news, this morning is the first morning I've not woken up in pain. I'm still dosed up to the eyeballs of course, still losing weight... ho hum.... just as well I had/have some to lose, but hey, no pain, I take that.
I'll keep you posted on developments and I'm hoping to get back to my regular authorly activities soon, but as you can imagine my mind is elsewhere right now.
I did manage to do my edits for my Christmas story Claimed at Christmas, so look out for that in December and as long as my meds stay on top of the pain I should be writing more stories. I certainly want to.
For now, hug your loved ones hard.
And stay naughty, of course ;-)