Today started out pretty normal. I woke up, did some cross stitching and went out for our 11am walk as usual.
(Card made for a special friends Mummy who had an operation recently. She has prayed for me non stop for the last few months so I thought I would let her know that I am doing the same. And as we are both believers in the power of Padre Pio's intercession it seemed fitting to sew his saying.)
Everyday we walk past the fruit and veg stall unable to buy anything as we are on low residue diets. We always stop to smell the strawberries; they are red and huge and smell divine. My kids say they 'are the biggest strawberries in the whole wide world'. You never see strawberries like this in Tesco. (Arial snapshot- not the best picture!)
I would just like to point out that we don't literally put our noses into a punnet but there are so many punnets that simply walking past means you get the most delicious smell that reminds me of summer days spent strawberry picking with my family.
There is always this sign by the strawberries and it always makes me smile. Maybe it's just my strange sense of humour or the high doses of opiates I'm on but I felt the need to share it on here.
The costa stall today was a mixture of jewellery, sunglasses and scarves but they also had a box of items that were free; you could take up to 5 items. There was a pendant I saw in the free box that was victoriana looking and was crying out for me to take it home but it was in the biggest ball of tangled chains and I tried to get it out with no success. I asked the stall holder if I could take the ball up to my bed to untangle so that I could get the pendant out and then I would return the other items to him, and he agreed.
So I spent the next hour trying to untangle the chains and resisting the temptation to simply rip them apart when my patience threatened to leave me momentarily.
Eventually the deep breathing and determination to free this beautiful pendant paid off and all the necklaces were untangled and restored to their former beauty. A couple of the nurses enquired as to what I was doing and when I told them and they saw the necklaces I had untangled they were picking out their favourites wishing they could keep them. I told them that although they were free and that they could have them if they wanted that I had to return them to the stall holder so that he knew I hadn't been dishonest in keeping them all.
One of the Health Care Assistants decided that the time was right for her to take her break so she accompanied me to the stall holder and when I showed him that I had returned as promised she asked if she may have the 5 free necklaces. She was delighted that he said yes and so were the other nurses as she dished them out back on the ward.
Back on the ward Dr 18 came to discuss the results of the MRI scan which has showed an abnormality in the rectal area but the radiographer could not state categorically in his report that this was the cause for the pain episodes. He recommended a rectal ultrasound which is like a wand with a ping pong ball at the end (maybe a tad smaller actually) which is inserted into the rectum to provides more detailed imaging of the area.
As Dr 18 left I had a question to ask and not hearing me calling him I got up and walked to the nurses station. I must have got up too quickly as suddenly the room was spinning and the Charge Nurse was catching me. Dr 18 and the Charge Nurse put me back to bed and got a nurse to do my obs which revealed a blood pressure of 80/41 which is low. They started me on some fluids through my Hickman line to try and raise my blood pressure.
Lisa, the pouch/Stoma nurse came to see me and when she popped off to get something from another ward I nipped to the toilet. I'd had an accident again so taking my knickers off I bent down to pick them up and the next thing I remember is coming round on the floor with a sore head. My recollection from here is hazy and I'm reliant upon what the other patients and nurses have told me to fill in some of the blanks.
On hearing the noise my head made hitting the door, the lady next to me, Kerry came to investigate and finding me spread eagled on the floor she shouted for the Charge Nurse. The Charge Nurse called for help and before long our small shower room was filled with people. With a bit if help I stood and was put back into bed and initially felt ok, bar the pain in the back of my head where I must have hit it and the throbbing in my line where I think that I must have pulled it or landed on it when I collapsed.
But within 10 minutes all that changed as I became unresponsive to the neurological observations that Dr 18 and Dr 8 were doing and they became very, very concerned. They called this special team which they said is the one below a full crash call and soon there lots of Doctors and specialist nurses around the bed carrying out tests, shouting for me to open my eyes, squeeze their fingers, lift my legs and so forth.
What I was experiencing can only be explained as a locked in episode. Being inside my body but not really able to respond or control it and unable to talk to explain this. When I later tried to describe it to Dr 8 I said it was like being a real life Russian doll set. I was one of the smaller versions of me stuck inside the big me that all the doctors were talking too.
I was also experiencing what the doctors said looked like mini fits and this combined with my lack of responsiveness they ordered an emergency CT scan to check if I had a bleed on the brain from where I had hit it. I was rushed down to CT and straight into the scanner, probably taking someone else's much awaited slot, then back to the ward.
Dr 7, Dr 18 and Dr 8 were stood around the bed as I started to come to. It didn't last long and I was back to being a Russian doll once more. Because the CT scan had come back as normal they were concerned that I had had an overdose of my painkillers. Apparently occasionally people's bodies store up the medication and it then reaches a point where you have an internal overdose even though you have been receiving the correct dose and been taking it correctly.
There was a drug to reverse the effects and after the usual difficulties in cannulating me it was given and I stated to feel a lot better quite quickly. Dr 8 requested that Sue fetch him some pick and mix to sustain him during his efforts to get a cannula into me! He even tried a yellow penis.
Pleased with that but concerned by my balance and stability the doctors agreed it was best if I stayed in bed with the sides up for the rest of the evening/night and that I was to use a commode with assistance if I needed the loo, despite the toilet being less than 5 steps away.
I did as I was told (for once I can hear you all saying) but then I started to feel a familiar pain in my rectum. I asked for pain relief immediately but the pain began to wash over me quickly like a crescendo of misery.
The nurses brought me the slow release pain killer but I needed something that was going to act now so they fetched the entinox and after setting it up they went back to get me something that would help my pain more quickly.
They gave me an injection and that along with the gas and air helped to control the pain to the point that I fell asleep. You will be disappointed to know that there was no random shouting today- maybe I was too tired from what had happened earlier.
I woke up to go to the loo and found another accident. The doctors think my incontinence is linked to the pain I'm experiencing. It's a good job I'm wearing super sized, nappy style protection otherwise my clothes and bedding would be frequently soiled.
Feeling unable to get back to sleep I decided to write this post to update you all as I've had some texts from friends and family concerned by me not replying to previous messages and my lack of presence on Facebook. So there you have it. What a day. It promised to be just a normal day but I don't think those days exist in my world!
NB x
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