It was just like . . . . . – on steroids”!!

Well, I left you all on a sort of precipice the other day. Time to share the on-going journey – with all its downs and ups!

In answer to that pregnant question from the previous Blog – the third “ology” was Neurology. I will continue on to explain.

Cycle 3 Week 1. This was going to be a bit of a challenge because I’d had a week off the drug and we go from zero to full dose! Additionally Steroids are administered as a pre-med. To be in a better position to monitor the anticipated Side Effects I had been booked in for an overnight stay on Day 1. Hopefully, at least the would avoid the previous months emergency dash to Luton and Dunstable’s Emergency Department.

cycle 3 kick off
Kick off Cycle 3 Week 3.

Once the admission process was complete and I settled in to write my Blog: the Blog you may have read last week. It had been a very sunny afternoon and a fine sunset was promised. The light was so intense I closed the venetian blinds as it was causing my brow to furrow. Maybe that was significant in the development of what was to come. However, all seemed fine; right up to and during my evening meal: a tasty Lamb Bhoona. I managed it all: good and tasty. A headache began to develop whilst I was eating.

lamb bhoona
Lamb Bhoona

That evening I had a choice of TV: Bake Off or the Women’s Football International. I actually wanted a bit of both. But it was still only about 7:00PM and I’m still Blogging. The headache continued to strengthen and when the Nurse came in for an Observation I sought painkillers. I had to give up writing and get comfortable in the chair for football. Comfortable? I no longer have the pleasure of feeling comfortable as the catheter seems to rub inside my urethra in my perineum area. But I persevered.

After about half an hour I couldn’t cope with Bake Off and turned my (limited) attention to the Footie. The headache was very intense by this stage and there seemed no relief. No more painkillers until 11:00PM! Doctors were called as my blood pressure was fluctuating and temperature was spiking. It all becomes mixed up from this point on for a couple of days. I’m having to join a few dots to make a coherent memory here.

I tried to sleep, but due to urological discomfort and a self-awareness of cognitive difficulties and residual headache – causing a frustrating absence of peace therefore only managed brief, fitful moments of shut eye: although my eyes were squeezed tight. I had to keep reminding myself it was still Tuesday night; Wednesday was just over the Midnight horizon.

The observations had indicated my body was in some distress: high temperature, blood pressure problems, high pulse rate, but mercifully no atrial fibrillation. The Consultant had called in during the night, received the up to date state of “me” and instructed the night staff to discontinue the pump until he could see me the following morning.

The combination of acute headaches and Minor Cognitive Impairment led the medics towards the thought I may have had a Stroke. I must admit that I didn’t think that; as I had no “one-sided impairment, dropped facial features, oven thought that as an option etc. But I’m only the patient or “participant”.

Morning came in early that Wednesday! I had been put on one hour observations; unbeknown to me. I was not fully aware of all this. All I could do was to keep drinking plenty of water. Something which I was unaware of, in the night, was that they pinched in a cannula and dripped in hydrating fluids. This was discontinued as my temperature spikes had rectified. I think that the Consultant had originally requested that drip when prescribing the Trial drug and the prophylactic Steroids. However, on admission, Tuesday afternoon, the Royal Free Information Systems were all down for a few hours: this instruction wasn’t carried out at the onset of treatment, although the Clinical Trial Nurse, marvellous Marvie, had infused the Steroids.

I couldn’t consider any food – I missed the dubious pleasure of boiled eggs, cheese platter and toast for breakfast!! What madness had caused me to order that?

When the Consultant called in the morning I was not “in my right mind”. I was having struggles remembering even simple basic information: I had become aphasic. Although concerned about the cognitive impairment he instructed them to re-activate the pump. Still the hourly observations and several visits from various Doctors of various disciplines. The situation was very worrying to Kym as I was not really with it; and not called her! Fortunately Marvie my Clinical Nurse called her and explained: providing some reassurance. Throughout the day I was still having to deal with the catheter and all the paraphernalia.

In the late afternoon, I was informed later, I’d had a visit from a Neurologist who subject me to half an hour of psychological and cognitive tests. I surmise that because of the intense headaches and the cognitive impairment they thought I’d had a stroke! I failed pretty miserably and the Brain CT scan, which had been considered, was booked.

I was still feeling deeply fatigued, mentally confused and isolated in a little hospital bubble. The consistent thread which I had to deal with was the Catheter discomfort and continually emptying the bag. I managed that well; no disasters. I missed my evening meal because I was “Nil by Mouth”. I actually didn’t miss it because I couldn’t face it – I was drinking 2 to 2.5 litres of water. Eventually they wheeled me down to the Imaging department and left me in a “cubicle”. I lay waiting and listening to other people’s tales of woe for a good while. Suddenly I remembered my collection bag, and reached down . . . . to feel a bulging bag of trouble! This was going to provide an additional practical cognitive test! Find a toilet – and there was no help on had as I didn’t have a call button. Fortunately I did have pyjamas; speckled green hospital PJs. Fortunately there was a sign on the corridor which I followed and then another and then another and . . . . eventually the temple of relief! I was able the open the valve and drain off – it was probably the bag that breathed the bigger sigh of relief. I was glad there was closet as the thought of draining into a urinal was even beyond my dexterity and even beneath my sense of dignity.

I toddled back the way I came; mainly remembered with the help of signs for “Imaging”. I reached my bed; which no one had occupied or wheeled away for being empty. After a short while a cheery member of staff came and told me I was next and would come back shortly to perform the CT Scan. She was true to her word and nimble negotiated the bed up the corridor through an assortment of patients in a variety of conditions gawping at me on my way for treatment. The scan took no time at all and she’d organised a Porter to return me to Floor 12. I didn’t have the presence of mind to ask when the results would be available.

Back in my room a kind one had organised a little Supper: Mushroom Soup and a Roll. I managed about a third of each. I was deeply tired and slept; relatively undisturbed by any clinical observations being made. That Wednesday was a long day.

Thursday came in gently. The usual clinical observations and the male Nursing Assistant was happy to sort out my night bag and brought me tea and biscuits; just the job you’d think. However my only disappointment about the whole service was the tea! A good brand, well hygienically packed: but a ONE cup tea bag! I suppose I’m partly at fault because I could have asked for two in a pot. The coffee was hit and miss – but it was OK when it hit.

Things get a bit sketchy from here. I can’t remember the sequence of events, what I did or who came to see me. It must have been the mild cognitive impairment in my emotional memory banks. However, I could both recall and answer most of the questions I’d been asked by the Neurologist on the Wednesday; including counting down from 100 by sevens. I had lain in bed recovering from the disappointing tea completing the exercise and checking my work by counting up, from 2, to 100. I could repeat this when my Consultant Dr Jasani came to visit early Thursday morning.

A more Senior Neurologist accompanied Dr Tom the first Neurologist. I was subject to the same interrogation. They would have really stumped me had the asked who was the Monarch or the Prime Minister. They looked at me rather suspiciously considering whether I had been a fraud the previous day or whether they had lost a potential patient for a lobotomy!. All that aside as the pump had been recently restarted I elected for another day and night of observations. I could get down to some Blog writing and even managed a little editing of a song I’ve been working on in Cubasis on my iPad. A calm day, and night. No dramas, no pain and the only discomfort was the hospital bed and the catheter in my urethra: and a medley of those two.

Morning came fairly early: I hadn’t enjoyed good sleep. This possibly due to anxiety over the Neurological stuff: I couldn’t afford, in due course, to be a patient at Headway! Both tea and coffee were off form. Now here was my planned treat. On the first night of my first overnight, back in August, I promised myself that on my last overnight stay I would have a Full English Breakfast. I tempted God’s providence by choosing this morning to enjoy the treat.

full english
Full English courtesy of Royal Free Hospital, London’s Private Patient Ward

Well would you believe it? Breakfast was due to be delivered at 8:30 and I felt chipper and was actually hungry. At 8:25 a Nurse came to ask me questions about the Clinical Trial and fill in some missing information regards how I had been during the previous couple of days. Door is knocked; Breakfast is delivered and placed on the bed’s table. The Nurse continues, and continues and continues; seemingly oblivious to my waiting feast losing heat by the second. My foaming taste buds must have sent out some aura as she stopped and said she’d let me get my breakfast; graciously!

Stainless steel lid off, spoiled for choice where to start, deciding on a little wedge of tomato and a slice of tomato; knock on the door. It’s Dr Jasani. “Don’t let me spoil your Breakfast.” – – “Not to worry I haven’t started yet.” Then into the questions again. I was feeling as well as could be expected following my ordeals and being “tubed” in two places. Yes all my observations were fine; pump was working fine and no problems during the night. There was nothing sinister discovered on the CT Scan but the Neurologist had requested an MRI. He then declared me fit to go home. He would sort out the Discharge paperwork and I could leave. I thanked him and told him I was going to enjoy my breakfast and I was very slow at getting ready (so true nowadays!).

The edge of enjoyment had been sliced off my Full English as it was lukewarm; but I managed most of it. The coffee had not improved any by hanging around for twenty minutes; however Eric the Nurse came in and I asked if he could organise a replacement in his good time.

I thought I’d be ready and able to leave by 11:00. It’s good to set a target; so I set to with my ablutions and packing. Well, 11:00 came and went; no letter. 12:00 came and went; no letter and no lunch. I’d been left alone for most of the time: even the cleaner hadn’t bothered me because I’d told her I was going home. By 1:00 I was concerned because it was Friday and Rush Hour starts early. I asked a Nurse who popped her head around the door. She went away and returned promptly to say “Yes, she’d print out the discharge letter.” Five minutes later she re-returned with the letter. There must have been some communications slip-up. Five minutes later still and I was out of the door, a quick “Thank you” to the staff and at the lift door!

Once away from the Hospital and in the real world I could speak to Kym and make my arrangements for the journey home: exhausted, a bit hungry and wanting to be in the bosom of the family.

I don’t recall any other adventures for a few days. I was gratefully happy to be home but flat-liningly exhausted from the usual fatigue but also all the stress my body had gone through. Kym too had suffered the anxieties of what I’d gone through; in many ways more acutely than I because she wasn’t there and could only imagine and worry. Well it was certainly an experience. To remember? Well I’ve actually struggled to recall and write it all down; in a way that the reader might enjoy and want to struggle to the end! It shone a light into my faith and prayer-life. Some situations occur when you can only trust in God, or whatever your beliefs, and allow the situation to run its course. You don’t even have the energy or consciousness to pray; whether in words or images or however you communicate with your God or other provision. In some situations you can really feel a wall of other people’s prayers offering protection. In some situations you feel a divine protector shielding you. In some you actually feel nothing! I don’t know what it says about me but I felt all of those. I’m grateful to God for carrying me through this episode. I grateful to Kym and all my family, friends and community who have leaned in and given support. Little messages of hopefulness are important and don’t require a response at the time, but believe me they make a positive difference.

roger and kym
Following the ordeal – back home. I look a little wraith-like!

Thank you for reading this far. God willing I will continue as the story is still in the making. As I write I’ve just started Week 3 of Cycle 3: the last week of the Treatment. Praise God for getting me there!

So in an attempt to bring the story actually up to date. I’ll skate over the previous week. There were no side effects between Week 1 and Week 2: one just segued into the next. There were some staffing issues in the Chemo Suite while performing the changeover – but the NHS is so desperately short of staff that a nice little gem of an extra of my Trial needs is difficult to accommodate. My Clinical Trial Nurse is on holiday for several weeks. I mistimed my travel and arrived at Royal Free over an hour early. I took myself up to Hampstead Heath and plodded up to the lower lakes and enjoyed my sandwich in beautiful Autumn sunshine.

picnic at hampstead heath
Spicy crisp and egg mayo sandwich . . . . mmmmm!

We have had some Urology issues to deal with: one 03:00 call to the District Nurses to release a blockage. We’ve contacted the Urology Clinic and been given some useful advice. As I prepared myself for my trip to London, this morning, I became suspicious that the flow was not quite as it should be, but so far I’ve managed the problem myself with some telephone advice from the excellent Hospital Urology clinic. The next step may be for me to flush the catheter. It’s a common issue. I’ve got a flush kit. But to date, the problem has really been one of anxiety: not imagination!

It’s Half Term here so my train is now full of Moms, Dads, Grannies and chattering kids trying to look cool and disowning their guardians. Ha ha I bet that changes when they want some coin! But all travel arrangements worked well. The Chemo Suite were well organised, the Doctor was punctual and the team knew how to change everything over. So I was on my home after less than two hours. Home, a proper cuppa and sultana scone: great bakery in Hampstead Village.

So it’s twenty past five and I’m washed and dressed for bed and looking forwards to more dreams of Subbuteo and Circus High Wire acts. I’ll leave you all at this neutral resting point.

Good night and God bless.

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