When you’re forced to beg, for some bloody paracetamol!!!!! (part6 recovery)

So I was alive!!!! But now for the hard work , recovery and I wasn’t prepared for how hard it was and unfortunately still is.
(Stupidly I thought I would be back in work within 3 months)

I was wheeled into my bay , still groggy from the anaesthetic.
The day is still hazy, but I still remember parts of it, which I am still surprised at .
My wife Sam , mum & sister were all there to greet me. With big smiles and tears in there eyes.
I kept drifting in and out of sleep . I had an oxygen mask covering my nose & mouth, this was to help clear the anaesthetic from my system.
On my legs were what I called, cricket pads. They were white, electronic, inflatable pads, with chambers that inflated and deflated. They massaged my legs and squeezed the muscles. This was to lower the chances of blood clots occurring .
I was dosed up, on a lot of morphine.
Now…..those close to me know, that when I had my bike accident 10years ago, as I mentioned earlier . I overdosed on morphine and ended up with morphine psychosis.
This was a pretty horrific time.
I suffered from extreme paranoia and hallucinations all the time.
These vivid hallucinations, included me waking up in surgery & watching my family be executed in front of me.
The final straw ended up with me rocking in my bed at Whiston hospital, thinking I was in a mental institute….. in Canada??
I begged the consultant to take me off the pain killers , I couldn’t cope and didn’t know what was going on. My brain was clouded, having been in a coma for over a week and a further few weeks dosed up on all this medication, painkillers and sedatives.
At first he said the pain would be to much, but as I sat there crying , pleading with him, he eventually agreed . 3 days later I woke up in pain, but that didn’t bother me. I suddenly realised what was going on, my legs were in plaster with external metal pins protruding from them. The drugs were finally out my system and reality kicked in.

Back to Walton …… and guess what, I started to get paranoia .
There was a elderly gentleman in the corner bed in my bay.
I needed sleep , my brain needed to recover and sleep was the key to this. But every time I dropped off . The elderly gentleman would shout at the top of his voice and it would startle me.
This went on for an hour and I was only just out of surgery. “HE IS DOING IT ON PURPOSE” i said to sam. I looked over and I could see his wife starring at me and I was convinced she was talking about me and she was telling him when I was nodding off . “SAM, THEIR DOING IT ON PURPOSE , I CAN SEE THEM PLANNING IT” Sam just looked at me and told me to stop being stupid and rest.
Just as I drifted off he shouted again, making me jump.
My head started to throb. I kept saying to Sam ” SHE IS STARING AT ME, LOOK THEY TALKING ABOUT IT, LOOK THERE WAITING TILL I FALL ASLEEP.” As I looked over, his wife caught my eye and said to me “REALLY SORRY, MY HUSBAND IS HARD OF HEARING , I AM TRYING TO GET HIM TO STOP SHOUTING, AS HE KEEPS WAKING YOU” I smiled and said its fine I hadn’t noticed.
I laughed and said to Sam, “HOW TWO FACED AM I, NO MORE MORPHINE FOR ME”
I spent the day drifting in and out of sleep, but I was surprised at how well I felt and alert considering I had just had major brain surgery.
My sister and Sam had even managed an update on Facebook following surgery. I was blessed to be inundated by requests for an early update on my condition , and that all had gone well . This was coupled with hundreds of messages of support.
My family said their goodbyes and left me to get some sleep, as it was getting late.
Right, time to settle down.
I was told to do very little and was confined to my bed .
This meant having to wee into a bottle.
But I felt well, so…..sod it I thought, I am getting up and walking to the toilet, which was in our constant observation bay.
I unhooked my cricket pads and got up. I took 2 steps the room started to spin, I managed to get to the toilet cubicle, sweat was pouring from me.
I grasped the hand rail as I struggled to stand. ” YOU IDIOT” I thought.
I went to try make it back to bed, abandoning the mission.
Half way across the bay, I collapsed crashing to the floor.
The nurses rushed round me and helped me up and back into bed.
My favourite nurse, sister Christine proceeded to take time out of her very busy schedule, to lecture and tell me off……
My lesson was well and truly learnt . I was dosed up on a lot of MEDS, painkillers and was high on adrenaline , so thought I was fine.
This was very apparent in the following days, as I struggled to move.

I lay in bed, recovering from the failed mission.
My dignity slightly lost as i was peeing into a cardboard container, which I then had to ask a nurse to take away …….. Sexy .

As I lay there, i closed my eye s , I could hear a dripping noise like a tap , but the sound wasn’t coming from a tap or a toilet, it was inside my head .
I shook my head from side to side, to try stop the internal drip on my brain. But as I did this there was a Swishing and sloshing noise , that only I could hear. When I tipped my head back I could here the fluid filling the hole up glugging away.
I would spend hours in the next few days, slowly moving my head side to side, playing with the fluid that was filling the giant hole, that was left in my brain from where the tumour was removed.
Later on that night the professor came to see me. He informed me that surgery had gone as well as could be expected. He was also happy with the amount of tumour that had been removed.
I already new he would not be able remove it all. A tumour in the brain is unlike one anywhere else . Excess tissue I.e the brain can’t be chopped away as this would cause major side effects and brain damage.

I eventually drifted off and had a full nights sleep .
The next morning I woke up. I felt weak and in pain, my head was pounding . Painkillers and oral morphine helped take the edge off , but it never really took the pain away.

The steroids had really kicked in and my hunger was out of control.
I just craved food, any food and wanted to eat.
One afternoon I had a 4 course lunch, by choosing everything on the menu…
Well a boys got to eat….

Anna (neuro-oncology nurse) to see me everyday to check on my progress .
I later asked Anna what the professor meant by “surgery had gone As well as can be expected” she replied , “well you survived and are still alive …… ”
O thanks!! But true.
She also said the noises in my head were normal. They should stop but everyone is different……
Luckily after a week, the constant dripping and sloshing stopped. To be honest I was slightly disappointed, as It kept me busy whilst I had no visitors.

The medical team were all impressed at how quickly I was recovering .
They reminded me that my brain was like a car crash on a motorway. The tumour being a crash or pile up. All activity (Traffic) had been diverted for years.
Now the crash had been cleared, it would take time to re-open those original routes.
I thought my brain would slowly re shape and close the hole , a bit like a sponge . But I was told that wouldn’t happen , the tennis ball size hole would stay, but fluid would fill the void!!!

I had streams of visitors over the coming days , which really helped pick me up and break up the time.
I spent most of the time in bed, when I got out of it even for a short amount of time , I would feel faint and sick.
After 2 days I was moved out of the constant observations bay and further down the ward. Closer towards the exit lol.

Sam visited everyday . She bought me my juices and healthy snacks to keep my nutrients and vitamin intake up. She could of bought me a dead dog, I was that hungry I would of eaten it …. Damn steroids.

We waited for my black eyes to appear and the swelling to form as warned by the medical team.
But they never came. The top of my head swelled for a day or 2 making me look like mega mind from the kids CGI film. But that was it.
Because of this, I told Sam to bring the kids to see me as they would find that funny , not scary.

The days slowly passed as I struggled to adjust . I couldn’t watch t.v or read as my concentration was poor and i couldn’t cope with the brain stimulation.
I would sleep 4 or 5 times a day in between visitors . I was always tired . It felt like I would need to sleep after drinking water. Fatigue, concentration , decision making and stress was and still is a killer, but that was and is more evident at home. Which I will cover in the next chapter.

In the end I needed to get home the final straw, came to a head over medication and a Junior doctors incompetence.

It was now Friday I was in my 3rd different bed and bay , in 5 days.
I had visitors all day, it was about 2pm.
I had been seen by the junior doctor. My heart rate during my observations was low around 44bpm.
This was normal for me it was usually around 48-52bpm.
The doc started to panic and insisted I was seen by the cardiovascular team and be transferred to their ward , once released .
I refused and said there was nothing wrong with my heart and I was very fit and this was normal. No-one was bothered the previous 4days .
After an hour of arguing, he agreed to leave it.
I had enough to deal with and new I was fine . This was my normal heart rate, not only this I was on morphine and in bed most the time, so it was bound to be low.
I later saw my professors no2, who was amazed at the doctors recommendations and said this wasn’t the first time he had caused chaos for no reason.

I now had a migraine and was feeling sick, I requested my pain killers.
The nurse came back and informed me that the same doctor had removed all my painkillers and medication.
I couldn’t quite believe it, I was in agony recovering from life saving brain surgery and I was being refused pain killers. I begged the nurse for anything even a pain killer, as my head felt as though it was going to explode.
She paged the doctor, as she couldn’t give me anything unless it was on my chart.
He came to my bed and said “I THOUGHT YOU NO LONGER WANTED MEDICATION, HAVE YOU CHANGED YOUR MIND” . At no point had we ever spoke about painkillers or medication , let alone ask to be taken off them!!!
He told me he would have to write me back up and would take an hour…..
He returned 30 mins later and said I was allowed my painkillers.
I asked the nurse for them , who said she would be 5 mins .
2 hours passed by. I again asked the same nurse politely, could I have some painkillers as I was in agony . She apologised and said she would get them now.
Another hour later , I watched her walk off the ward at 9pm and go off duty. I sat there, my head felt like it was splitting , my vision was blurred and I felt physically sick. The pain was that bad I had tears in my eyes. I text Sam who just kept telling me to cause a fuss and ask for them.
My friend Vicky was also texting me and was threatening to come down and demand them for me… Which I new she would do, if I said ok.
I saw another nurse and politely explained how I felt and that I needed some painkillers . He said give me 5 minutes as the ward was busy .
Another hour passed . Right, I appreciate how much the staff had done for me and how busy and understaffed they were . But I didn’t have a sore leg or was recovering from a cold. I had been through major brain surgery only 4 days earlier and was suffering horrifically. I had been politely and quietly requesting painkillers since 2pm … It was now 1030pm .
Maybe that’s where I went wrong ,mI should of created a fuss and demanded them now.
Unfortunately sister Christine was on her day off, otherwise I would of had them several hours earlier. She was brilliant .
I didn’t want to cause a fuss or be a pain, as my wife is a nurse, my sister a midwife. I new how hard their job was.
A health care assistant who had been on all day , came to have a chat with me , where he asked if I felt better after my pain killers .
When he heard I still hadn’t had any, he stormed out, ranting “this is disgusting”
2 minutes later he came back with a nurse and my Medication and painkillers.
8 hours after my first request I had finally got them.
I decided there and then , that I would request to leave in the morning.
At home I could take my own medication instantly and just stay in bed.
The next morning 6 days after being admitted , I was given all my medication , steroids and information and was on my way home…. I thanked the staff and bought them all krispie cream doughnuts, to say thankyou.

Time to start the slog that was recovering at home.

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2 responses

  1. Found your blog a relief, I had a benign tumor which was removed on the 22nd of Jan, I also was refused painkillers because of allergies. I was given parabloodycetamol 😊 until I caused holy hell on my bay. I was discharged 24 hrs after surgery which was strange as I thought I would be in five days at least. I can’t remember what the doctor told me and no one was allowed in other than visiting hrs. I’m now experiencing a swelling on opposite side to my surgery, did you have this and how long. I’m honestly clueless as I can’t remember the first 24hrs.

    Like

    • Hi Karen
      Thanks for getting in touch. My swelling was on both sides of my head . Lasted for 3-4 days.
      I am being treated at Walton neuro and they have been great. Unfortunately I had that one day where I couldn’t get anything. What painkillers were you sent home with??
      Do you have a neuro-oncologist nurse who you can ring?.
      I was allocated one and I can email or contact her at anytime and she gets back to me.
      The swelling could be normal, but if your worried, phone the hospital and department who treated you. Failing that go to a&e or your gp. You can’t be to careful.
      I take it you are waiting for the histology report on what grade and tumour type it was .
      Dave x

      Like

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