My Daily Updates
Week 1 Posts
Beginning Friday, March 27
Friday, March 27 — GP Call and A&E
Today started normally enough.
I had arranged a health check with the GP early in the morning so I could still go into the office afterwards. They did blood tests and checked my vitals before I headed to Manchester for the work day.
I spent the whole day in the office as normal.
Later on, while I was still in Manchester, my wife called me saying the doctor was urgently trying to get hold of me and that I needed to answer the phone or call them back immediately.
I walked back to the car park and called the GP from the car.
They told me I needed to get to A&E as soon as possible because my blood results were showing extremely severe anaemia. They said I should go to the nearest hospital immediately.
The nearest was Manchester Royal Infirmary, but although I had been increasingly tired recently and had a cough that seemed to be getting worse, I still felt reasonably okay overall.
Around those first hospital visits they also carried out a CT scan, either on the Friday or Saturday, which thankfully came back clear.
Instead, I drove back towards Bolton and went to A&E there.
I ended up spending the entire night in hospital, speaking to different consultants and junior doctors while they tried to work out what was going on.
That was the beginning of everything.
The rest of the night was mostly slow and exhausting.
There was a lot of waiting around before I eventually saw a doctor properly later in the night. I assumed the first step would probably be some kind of blood transfusion because of how serious the anaemia sounded, but from what I remember, that didn’t happen at that stage.
Eventually I was moved into another waiting area or ward room and saw another consultant or junior doctor at around two in the morning.
He was personable enough, but honestly I wasn’t very impressed. I remember feeling like he spent a lot of time looking at his phone while talking to me, which didn’t exactly inspire confidence.
Most of the conversation was repeating the same questions I’d already answered multiple times during the night, which was frustrating, although by that point I was also just exhausted.
Still, one thing he said stayed with me. He told me:
“Whatever it is, we’ll get to the bottom of it and help you fix it, so don’t worry.”
That part was reassuring.
After that I was put on fluids and left waiting again.
I tried to sleep sitting up in a chair, but honestly barely slept at all.
Later on another doctor reviewed more of the blood results and explained that my kidneys were functioning at less than 25%, which obviously wasn’t good news.
At that point they were still trying to analyse the rest of the blood work and decide what to do next.
After more waiting, and once the fluids had finished, they eventually told me to go home and come back later.
By then my wife had come to the hospital. I’d originally told her not to bother coming because there had been so much waiting around already, but she came the following day and spent the whole Saturday with me there.
Once we finally got home, I was completely exhausted.
We basically slept right through until Sunday afternoon.
Monday, March 30 — Back to the Hospital
On the Monday I went back into the hospital again.
This time we went straight back to the same waiting ward area, which I think was called AU1 or A1.
It was more waiting around for doctors and more blood tests.
Eventually I saw another consultant later in the day.
Everything was still a bit unclear at that stage because they were continuing to analyse blood results and trying to understand what exactly was causing everything.
I think this was the day they finally gave me a blood transfusion because the anaemia levels were so bad, although the whole period is a bit of a blur now.
Oddly enough, despite all the results sounding serious, I still didn’t actually feel dramatically worse.
Looking back, I think I had probably just become used to feeling terrible over such a long period of time that it had started to feel normal.
The day dragged on again for hours before they eventually sent me home and told me to come back the next day.
Tuesday, March 31 — Admitted to the Ward
On the Tuesday I went back again, and this time they decided to keep me in.
I was admitted onto the general AU1/A1 ward so they could monitor me properly, run tests faster, and keep a closer eye on things throughout the day.
At first I hesitated about staying in hospital, but looking back I think it was definitely the right decision.
They gave me a bed, visitors were allowed, and honestly the nurses were brilliant.
They really looked after me well.
The hospital food wasn’t amazing, but my wife brought me meals every day which helped massively.
The hardest part for me wasn’t actually being ill.
It was watching her leave every evening and drive home on her own while I stayed in the hospital.
I kept worrying about her more than myself.
Later in the week, I think around Wednesday, her sister came down to spend time with her and give her some support, which I was really grateful for.
During those first few days on the ward they mostly had me on general tablets and basic treatment while they continued analysing everything and trying to work out exactly what was happening.
At that stage, there were still far more questions than answers.
Wednesday, April 1 — Settling Into the Ward
Wednesday was another fairly quiet day medically, at least from what I remember.
My wife’s sister came down to give her some moral support and company, which I really appreciated.
The doctors and nurses continued running tests throughout the day, taking more blood samples and monitoring everything regularly.
At that stage things still felt very uncertain.
I don’t remember any major treatment changes happening that day. I think I may have been put on another fluid drip overnight, but most of the focus still seemed to be on analysing results and monitoring my condition.
Sleeping in the ward was difficult.
There were several other patients nearby, mostly ladies in the same bay and another man next door, so there was constant background noise throughout the night.
On top of that, nurses were checking observations and taking vital readings every few hours.
Even during the night I was regularly being woken up around four in the morning for blood pressure checks, temperature readings, and general monitoring.
Still, it had to be done.
That was just part of being there.
Thursday, April 2 — Hearing the Word “Cancer”
Thursday was the day things became much more real.
Earlier in the day a general consultant came to speak with me and explained that they believed I had something called myeloma.
At the time I didn’t know much about it, only that it was a blood disorder and a type of cancer.
Hearing that obviously knocked me back quite a bit.
The consultant explained that a lot of the blood and urine results were strongly pointing towards it, although they still wanted to fully confirm the diagnosis.
To be honest, the conversation itself felt quite clinical and not especially personable, but my head was pretty foggy at that point anyway because everything was happening so quickly.
One of the smartest things my wife did throughout all of this was recording the conversations with the doctors.
There was so much information being thrown at us so quickly that it was almost impossible to properly process or remember everything.
I’m genuinely grateful she thought to do that.
Later that day things improved a lot when the specialist haematology consultant came to see me.
His name was Dr Patel, and he came with Anne, one of the haematology nurses.
He explained everything much more calmly and clearly.
He said they were now fairly certain it was myeloma, but they wanted to perform a bone marrow biopsy from the pelvis to confirm it 100% and learn more about exactly how it was affecting me.
He explained that myeloma happens when certain cells effectively go wrong and begin spreading through the bone marrow.
He also reassured me that nothing I had done caused it.
That conversation actually helped mentally.
It also explained why my kidneys had been struggling and why some of my blood results had looked so severe.
Dr Patel also explained something important:
Although myeloma isn’t considered curable, it is treatable.
With treatment, medication, monitoring, and maintaining a healthier lifestyle overall, many people are able to live relatively normal lives for years.
That became the thing I focused on.
I remember repeating that part back to my wife and her sister because I knew they were devastated hearing the word cancer.
In my own head, I kept thinking:
It could have been even worse.
Or there could still be more complications we hadn’t discovered yet.
At least now we were finally starting to understand what was happening and could begin treating it properly.
Dr Patel wanted to start treatment immediately, so they put me onto high-dose dexamethasone steroids straight away.
The plan was then to arrange the bone marrow biopsy the following week to officially confirm everything and determine the exact details of the disease.
They also carried out another ultrasound scan on my thyroid around this time.
I’d previously had thyroid checks months earlier where they had found a few small nodules, but at the time they had said they looked harmless and only needed monitoring every few years.
This new scan came back with basically the same conclusion.
The thyroid looked fine overall and wasn’t believed to be connected to the problems causing everything else.
In a strange way, every test that ruled something else out felt like one less thing to worry about.
That was the day everything changed.
Sunday, April 5 & Monday, April 6 — Norovirus and Isolation
A few days later things became more difficult physically.
I developed really bad diarrhoea.
Everything was extremely watery and I was constantly having to go back and forth to the toilet, probably seven or eight times during the day.
That was harder than it sounds because I was dragging an IV stand around with me and by then my back had started aching badly as well, probably from the hospital bed, lack of proper sleep, and being generally run down.
During one of the regular nurse checks I mentioned what was happening, and they asked me for samples so they could test for things like norovirus.
While they were waiting for results they moved me into a private isolation room on the ward.
Honestly, having my own room actually felt like a luxury after the main ward.
It was much quieter, I finally had some privacy, my own shower and toilet, and I thought I might finally get some proper rest.
They also gave me a portable commode and cardboard containers for urine samples because they were trying to avoid potentially spreading infection to the shared ward toilets.
It was all a bit embarrassing, but I understood why they had to do it.
The confusing part came afterwards.
At first, two separate staff members told me the norovirus test was negative.
They said I could start using the normal bathroom again, so I did.
Then later another nurse came in asking if I had used the shared toilet.
When I said yes, he explained they had now confirmed I actually did have norovirus after all.
That meant they had to close off another toilet because of contamination risk.
I felt bad about that, especially because I’d only followed the instructions I’d been given.
Around the same time the doctors also paused the dexamethasone steroids because the steroids lower your immune system, and they wanted my body better able to fight the infection.
Up until then I hadn’t actually been started on antibiotics, something my godson had even questioned earlier.
But shortly afterwards the consultants decided to start me on broad-spectrum antibiotics as well.
Despite all of this, strangely enough, I still generally felt okay in myself.
At least mentally, I felt calmer now that they were finally treating things directly and monitoring everything closely.
Tuesday, April 7 — Moving to the C Ward
On the 7th I was moved into the C ward into my own room, which was a noticeable step up in comfort.
It was a larger private room with more facilities, including an en-suite bathroom and two more comfortable chairs, which made things easier for my wife when she was visiting.
There was a TV and internet access as well, although I barely used any of it.
I think I switched my laptop on only once during that whole period, mainly just to try and catch up briefly.
Most of what I did was just on my mobile phone, including checking emails and keeping my work colleagues updated.
My workplace were very understanding about everything, and I was already officially off sick at that point so there wasn’t any pressure there.
Physically, things were starting to shift slightly.
The trips to the toilet had reduced and things were becoming a bit more solid, although still not back to normal.
That gave me a sense that things were slowly settling down, even though my vital signs were still a bit unstable.
Over the next couple of days there were a few worrying moments.
One night my heart rate was very high at rest, my temperature was up, and my blood pressure was also not great.
The student nurse doing my observations was quite concerned and escalated it quickly, saying she didn’t want anything serious happening.
That was understandably alarming for both me and my wife.
They brought in another nurse who spoke to the consultant, and they carried out an ECG in my room.
It was the first time I had properly had one done, and the process felt quite intense at the time, especially hearing repeated concerns about my heart rate.
They struggled a bit to get the electrodes to stick properly, but eventually completed the test and sent it off for review.
Thankfully the ECG came back normal, and they attributed the episode to the infection and general illness rather than anything cardiac.
A similar situation happened again a couple of days later, but again it resolved and the ECG was fine.
They felt the norovirus and overall infection, possibly combined with the medications, were the likely causes of the fluctuations.
The antibiotics also seemed to be gradually helping, and my readings slowly began to stabilise again.
There was also a thought that the steroids may have been contributing to the elevated heart rate at rest.
Overall, it was another reminder of how closely everything was being monitored, even when things felt like they were improving slightly.
I should also add that on the 7th of April I was given an IV treatment called Zomtronic, which I was told helps strengthen the bones and is commonly used in conditions affecting bone health.
Friday, April 9 — Bone Marrow Biopsy
On the 9th of April I had my bone marrow biopsy.
It was carried out by a lovely member of the haematology team called Alicia.
I was quite anxious beforehand, partly from things I’d read and also advice from family.
I asked if they used gas and air, but they said they don’t usually provide that for this procedure.
In the end it was done under a local anaesthetic.
My wife was with me throughout and I ended up squeezing her hand for most of it.
The procedure itself wasn’t unbearable, but I was very aware of what was happening.
It felt like a strong pressure and a strange sensation, almost like something drilling slowly into the bone and rotating.
Not constant pain as such, but moments of discomfort and a very unsettling feeling overall.
At times it was a bit painful, but not what I would describe as excruciating.
The main thing I remember is gripping my wife’s hand quite tightly on a few occasions, so I owe her an apology for that.
I was very relieved when it was over.
Around this period I was also still struggling physically, particularly with my back.
Getting up out of bed was difficult, and I think that was partly due to lying down so much over several days.
I did try to stay mobile where possible, walking slowly around the room when I could.
I wasn’t doing formal exercise, just trying to keep moving a little.
I was aiming for around four to five thousand steps a day, even though it was slow and limited, just to avoid becoming completely inactive.
It felt like something I needed to do, even in a small way.
Monday, April 13 — Low Calcium and IV Infusion
Around the 13th of April I was told my calcium levels were very low.
From what I understood, this was likely related to the treatments I was receiving.
I was told that medications like the bone-strengthening IV treatment (Zomtronic) can affect how calcium is moved between the blood and the bones, which can sometimes leave calcium levels low in the bloodstream.
Because of this, they started me on a calcium IV infusion which ran for over 20 hours.
They needed to monitor my heart closely during the infusion, as changes in calcium levels can affect heart rhythm.
The machine used for the infusion had alarms set that were quite sensitive, and it seemed to be triggering alerts constantly, even when my heart rate was within a normal range around 80 bpm.
This became very frustrating during the night because the beeping made it difficult to rest.
I mentioned it to the nurses, but I was initially told the settings couldn’t be changed on that device.
After a couple of hours of broken sleep and ongoing alarms, I decided to look into it myself and checked the model number online.
I found out how to adjust the alert thresholds so that the alarm would be less sensitive and only trigger at lower heart rates, closer to 60 bpm.
Once that was adjusted, the situation became much more manageable.
During this time my heart rate would occasionally drop into the high 50s while resting.
At first this worried me because I had been told to alert staff if it went below 60.
So I would sometimes move around slightly to bring it back up, which became quite a repetitive cycle.
I spoke to the nurse about it and was told that as long as it recovered and didn’t stay low, it was not a major concern.
Even so, it still felt a bit unsettling at times.
Eventually I managed to get a few hours of broken sleep.
Mid-April — MRI Preparation and MRI Scan (April 15)
Around the 15th of April, my calcium drip was stopped and I was taken by ambulance for further scans.
It felt very strange leaving the hospital room at that point.
Because of the norovirus isolation earlier and the general fear of catching something again, I had barely been outside for a long time.
Even though I had a window in the room, it didn’t really feel like I was seeing the outside world properly.
Walking out of the ward and seeing people, fresh air, and normal life again was unexpectedly emotional.
It was only a short walk of maybe a couple of hundred metres to the ambulance, but it felt like a completely different world.
The ambulance transfer was from Bolton to Wigan, where the specialist imaging unit was based.
One of the nurses who had been looking after me for several days came with me, which was reassuring as she was very kind and familiar with my situation.
Once we arrived, I was taken into a cubicle where they checked my details, took blood pressure, and confirmed my identity.
They then injected me with a contrast agent (described as an “ink” at the time), which needed time to circulate through my body.
I was left to wait for around an hour while this processed.
After that, I was taken into the imaging room and placed into a large scanner.
It felt quite intimidating, almost space-age in appearance.
I was asked to keep completely still during the scan.
They used supports and light restraints on my arms and feet to help keep me steady, although it was not uncomfortable.
The scan itself lasted around 20–30 minutes.
While inside, I tried to stay calm and focused, even spending some time quietly praying to help me through it.
Once the scan was complete, I was taken back out and waited for transport.
The nurse kindly arranged a packed lunch for me, including a cheese sandwich, biscuits, and orange juice.
I didn’t drink the juice at the time due to avoiding acidic drinks, which I had already started doing before hospital admission.
After everything was finished, I was transported back to the ward at Bolton.
The results of the scan would take several days to a week to come back.
By the time I was back in my hospital room, it felt like another long day had passed in what was becoming a very long stretch of treatment and investigations.
Friday, April 17 — Starting Treatment and Meeting Dr Chetan Patta
On the 17th of April I was introduced to another haematologist, Dr Chetan Patta.
He immediately stood out to me in a very positive way.
I really liked his manner of speaking, his kind face, and the way he explained things in a clear and human way. It just felt like I connected with his approach more naturally.
It’s difficult to explain properly, but different doctors have different styles and personalities, and while all of them were clearly very good and professional, Dr Parter’s way of communicating just felt more “me”, if that makes sense.
I had also seen other consultants with very different styles, including some who were more formal or blunt in their delivery, but again all still professional and competent.
I was very relieved to hear that Dr Parter would be leading my ongoing treatment going forward, and thankfully that was confirmed.
He explained the overall plan clearly, and said that now that the norovirus situation had settled, they were ready to begin treatment.
So on the 17th they started my treatment.
Joe from haematology and Christine from haematology came to my room with the equipment and set everything up there.
They began the treatment and said they would need to monitor me closely for around four to five hours afterwards to check for any reactions.
It felt like another important step forward in the process, finally moving from investigations into active treatment.
Friday, April 17 — Early Treatment Cycle, Monitoring, and Going Home
After the treatment was started, I was monitored regularly, roughly every hour or so, to make sure there were no immediate reactions.
Overall things were looking stable and, in some areas, improving.
My kidney function readings had started to improve, which was a positive sign.
My calcium levels were also better at this point, which meant I could slowly start reintroducing foods like cheese again.
Potassium was still low, but not dangerously so at that stage, and it was being kept an eye on.
The treatment plan was explained as an initial course of four cycles.
Each cycle involved weekly visits: blood tests every Tuesday and treatment every Friday.
The treatment itself consisted of two injections — one longer one around 10 minutes, a shorter one around 5 minutes, both given into the abdomen, followed by a very quick injection on the other side.
After each session I would be monitored for a few hours to ensure there were no adverse reactions, although so far everything had been tolerated well.
Looking back a week earlier, after starting high-dose steroids before the norovirus episode, I had also noticed some changes in my skin.
While cleaning myself up in the ensuite one day, I had shaved and washed and noticed a rash developing on one side of my face.
It was on the right side and looked quite unusual compared to anything I’d had before.
At the time it worried me slightly, although I wasn’t sure if it was related to medication, heat, or simply being in bed and lying on one side too much.
It also could have been related to general hygiene changes while being in hospital and not being able to shower normally.
Thankfully, it cleared up within a couple of days and did not return.
On the 17th itself, after several hours of monitoring following treatment, I was eventually discharged back home.
By that point I was quite mentally tired, and there were moments during the day where my anxiety and OCD-like thoughts were quite strong.
At times it genuinely felt like I might not be leaving the room, simply because I had been there for so long and so much had happened in that space.
Each stage of the day seemed to lead into another, and it sometimes felt like I was stuck in a loop of monitoring and waiting.
So when I was finally told I could go home, it was a huge relief.
I was just happy to be leaving and returning to familiar surroundings.
My wife had been with me every single day throughout all of this, which I will always be incredibly grateful for.
The support from my wider family was also constant and very important during this time.
I hadn’t been able to share everything with friends yet, mainly because I didn’t want to worry or upset anyone unnecessarily.
I also had a video call with my niece, who was in America at the time, which was emotionally quite difficult because I hadn’t originally planned to have to explain everything that way.
The delay in diagnosis and treatment because of the earlier infection meant things unfolded differently than expected.
Still, being able to speak to family helped a lot.
By the end of it, I was simply glad to be home, starting outpatient treatment, and getting into a more structured routine.
And on a small but personal note — I was also very happy to be able to have cheese again.
Gap Update — April 18 to May 9 (Ongoing Treatment Progress)
Over the weeks between mid-April and May 9, I continued with the structured outpatient treatment plan.
On Tuesdays I attended hospital for blood tests and routine checks including vitals, and on Fridays I went in for treatment sessions followed by monitoring for a couple of hours afterwards. Over time, the monitoring period reduced from around an hour, then 30 minutes, as I continued to tolerate the treatment well.
There were ongoing fluctuations in blood results during this period.
At one point my potassium levels were high, but Dr Chetten was not overly concerned and explained that the steroid part of the treatment would likely bring it back into range, which it eventually did.
On another occasion, a nurse (Vicky) noted some concerns during blood tests when my vitals showed slight shaking. This was likely related to the steroids, but as a precaution they arranged for an echocardiogram the following day.
This initially made me anxious, but I understood it was a precautionary step.
The echocardiogram was carried out by a technician named Pedro. It took around 10 minutes and he reassured me that there was nothing immediately concerning, with results to be reviewed by Dr Chetten.
Around this time, I was also informed that previous CT scans had come back clear, including scans of the chest, abdomen, and kidneys. There were no blockages or obvious abnormalities.
A small cyst was noted near the kidneys, but this was described as common, especially in older adults, and something to simply monitor.
Thyroid findings remained stable as well, with earlier nodules continuing to be classified as non-concerning and only requiring periodic monitoring.
MRI and CT imaging reviewed by Dr Parter also showed no bone lesions or unexpected findings, which was another significant reassurance.
Kidney function readings fluctuated during this period. At one point there was concern that improvement had stalled around the 30% range, and I was told I might be referred to renal care for additional input.
This was understandably worrying at the time.
However, shortly afterwards I received a call from Christine confirming that my kidney function had actually improved significantly to around 45%.
This was a major positive shift and likely reflected more up-to-date blood results than earlier readings.
Hearing this was a huge relief, and my wife and I both had a very emotional moment after the call.
We took a moment of gratitude together afterwards.
Hemoglobin levels also continued to improve slowly, reaching around 107, though still not within normal range.
During treatment sessions, Dr Chetten appeared pleased with progress and briefly checked in during one of the infusions.
The general impression from the team was that I was responding well overall to treatment.
By the time of later treatment cycles, blood potassium was back within normal range, calcium was low again but manageable, and kidney function improvements had become more stable.
Calcium supplementation was adjusted accordingly.
Overall, the pattern of results suggested gradual but steady improvement across multiple systems.
Emotionally, this period included a mixture of reassurance and occasional anxiety, particularly when waiting for test results or hearing about possible referrals.
However, overall direction of travel felt positive.
By May 9, I had completed multiple treatment cycles and was continuing on the outpatient plan, attending regular Tuesday and Friday visits, and responding well to treatment so far.
Update — Wednesday, May 6 to Saturday, May 9
On the 6th of May and again on the 9th of May, my kidney function readings (eGFR) continued to show small but steady improvement.
The eGFR had moved from around 45 up to approximately 47.6.
This was explained to me as the stage where improvement becomes slower and more gradual rather than large jumps.
The main message from the team was that this plateau phase is expected, and the key is maintaining stability and continuing hydration rather than expecting dramatic changes.
The emphasis remained on keeping well hydrated and continuing to support the kidneys while treatment continues.
After my treatment session on the 8th (and again around this period), I was monitored for about 30 minutes before being allowed home, with everything still appearing stable.
During this time I also began returning to work gradually.
The first day was mainly catching up on emails and attending meetings, although my work laptop was heavily slowed down due to updates, so I kept things very light.
The following day I did a more normal half-day of work, including an audit and clearing a number of tickets from my queue.
It felt like a proper return to routine, although I was still being careful not to overdo things.
After my treatment appointment at around 2:20pm that day, I was again monitored for around half an hour before being discharged home.
Later in the evening I noticed my urine had become quite dark, which caused some concern.
I looked into it and also checked guidance, and it suggested this can often be related to dehydration, especially after treatment days.
I realised I had likely only had around half a litre of fluid over several hours, along with some walking and general activity, so dehydration seemed the most likely cause.
I made a conscious effort to increase my water intake over the next hour or so.
After drinking more fluids (around three-quarters of a litre), I noticed the urine became clearer again and returned closer to normal volume.
This was reassuring, although I remained cautious and monitored it overnight.
Thankfully, by later that night and the following morning, things had improved and remained stable.
If it had not resolved, I would have contacted the haematology team or attended A&E as advised.
Overall this episode was most likely dehydration-related, but it was a reminder to stay on top of fluid intake.
By Saturday, May 9, I had completed my morning medication (including calcium and omeprazole) and was continuing my routine.
The plan for the day was to have a shower, eat breakfast, do some chanting for around half an hour, take a short walk, and possibly join my wife on a trip to Costco.
At this stage, things felt relatively stable, with slow improvement continuing and a gradual return to normal daily life.
Saturday, May 9 — Continued (Afternoon and Plans)
Later on May 9, the plan for the day was to sit in the car while my wife went into Costco to pick up fruit for us and also some items for Reiki water sponsorship, which we support most years, along with a few other bits she needed.
After that, we were considering going to the temple to drop things off. If it was quiet, we hoped to go in briefly and make the donation, wearing a mask as a precaution.
The rest of the day was intended to stay fairly relaxed.
We were hoping to come home and watch Liverpool vs Chelsea, and I also planned to continue with my usual routine.
I had some small home tasks in mind as well, including looking at a transceiver that had blown in a light fitting in the temple room, and checking on some LED bulbs I had ordered for the kitchen.
In terms of health and routine, I’ve been trying to stay consistent.
Every other day I do a 20-minute session called P-Jump, a health and wellness routine led by a trainer I believe is Buddhist-influenced.
I aim to do this regularly as part of keeping both body and mind steady.
I also set myself a daily step target of around 4,000 steps.
Most days I naturally exceed that through normal movement around the house and hospital visits, usually reaching 5,000, sometimes 7,000, and occasionally close to 8,000 steps.
The pace is still generally slow, but I am gradually trying to increase it slightly without pushing beyond what feels safe.
I’m mindful not to overdo things, especially around treatment days when I can feel more energised or slightly “hyper” from the steroids on Fridays and Saturdays.
I don’t want to end up exhausted at the start of the week.
Work has been extremely supportive throughout all of this.
My colleagues have been brilliant, and my manager has been very understanding.
I was able to adjust leave arrangements and avoid needing to formally book time off for every appointment.
My manager even suggested taking Mondays off to shorten the week and allow recovery time after treatment cycles, which I’ve followed initially.
So I’ve arranged to take upcoming Mondays and Fridays off for a period, creating longer weekends and more recovery time.
This arrangement currently runs through to the end of May, including around bank holiday periods.
It has made the balance between treatment, recovery, and work much more manageable.
Overall, the approach now is very much day by day, adjusting as needed depending on energy levels and treatment effects.
For now, things remain stable and manageable, and I’ll continue updating as things change.
Thursday, March 26 — Before It Really Started (Context)
Although this is written at the end of the timeline, this entry is to give context for how things were before everything fully escalated.
Looking back, the health issues likely started earlier than I realised.
A couple of years before all of this, we travelled to India in August for my mother-in-law’s last rites. During that trip I picked up a cough, which in my experience was fairly common due to dust and air quality. I usually get something similar each year and have previously treated it with amoxicillin, which eventually cleared it.
This time it felt stronger than usual, and other people around me noticed it as well.
I tried antibiotics, which helped slightly but didn’t fully resolve it.
Interestingly, my wife also developed a cough around the same time, so I initially assumed it was environmental—dust, fumes, and general air quality in places like Delhi.
Around that trip I also stopped smoking and vaping in Ayodhya quite suddenly. It felt like a personal decision at the time, something I linked to a moment or sign, and I moved to completely stopping nicotine. I switched to sweets and other substitutes instead.
At the time I didn’t think much of it medically.
I often felt tired and slept a lot during that period, but I had experienced fatigue before and tended to sleep it off, so I didn’t consider it unusual.
We also spent time in Mayapur, where I rested quite a bit while my wife was engaged in devotional activities. I remember that as a peaceful time overall.
My appetite wasn’t great during parts of the trip, although I still enjoyed certain foods, especially in Ayodhya and Mayapur.
It was also a positive experience seeing my wife’s godbrother in India and visiting the temples and deities there.
After returning home, both of us still had the cough for a while. It eventually settled for about a month before returning again.
From there I started going to the GP and having various investigations.
A chest X-ray came back clear. A throat and ultrasound scan showed only a minor thyroid finding, which was classed as something to monitor every few years and not thought to be related.
At one point I also broke a rib while bending down to pick up a piece of paper. The movement felt awkward, and I immediately felt sharp pain. It was later treated as a likely rib fracture, managed conservatively.
There was also a separate incident where I experienced significant pain on the other side of my chest after lying on a hard floor while fixing a sink, which was later considered possibly pleuritic or musculoskeletal.
Looking back, I was gradually becoming more fatigued, although I didn’t fully recognise it at the time.
My appetite was decreasing, and people began noticing that I looked thinner, even though my weight remained relatively stable on paper.
I often ate quickly and went straight to bed afterwards, and over time I found myself relying more on processed or takeaway food, while losing interest in normal meals.
I would sometimes eat just because food was there, rather than because I enjoyed it.
I also noticed I was less active in terms of doing practical tasks at home, which is unusual for me. Things I would normally do easily—maintenance, repairs, organising—were being delayed or avoided.
Even when I ordered items to fix or improve things around the house, I often left them unused.
At the time I attributed all of this to age and general fatigue, without realising it might be part of something more significant.
I was still managing to hit steps and stay active in bursts, including reaching around 10,000 steps on some days, although I would feel slightly breathless at times without fully appreciating why.
In hindsight, there were subtle signs building up over time, but nothing that clearly pointed to a single cause at the time.
Even small things like frequently wearing my coat indoors or when resting now stand out in retrospect, though at the time it felt like just comfort or habit.
There were also small physical cues, such as making more noises or groans during simple movements like bending or lifting, which others may have noticed more than I did.
At the time, I simply thought I was getting older and a bit more tired.
This period now feels like the slow beginning of everything that followed.
Additional note — environmental triggers (March 26 context)
Another pattern I noticed in hindsight was that certain environments seemed to trigger coughing quite quickly.
If I walked past a fridge at home and opened it, or passed refrigerated sections in supermarkets like Tesco, I would often start coughing within 30 seconds to a minute and then feel the need to move away.
Similarly, going into the garage would frequently trigger coughing as well, so I began avoiding it without really thinking too much about it at the time.
Looking back, it feels like there may have been something in the air or certain environmental triggers that were affecting my breathing, even if I didn’t fully understand it then.
At the time I just adapted my behaviour around it, but in retrospect it all forms part of the bigger picture.
This is how it all gradually built up before the later medical investigations and diagnosis.
Saturday, May 9 — Continued (Lifestyle Changes and Reflection)
Later on May 9, we went to Costco and found it surprisingly quiet.
We managed to fill up with fuel quickly, and because it was so empty I decided to have a small walk around and look at some clothes for a while.
I didn’t end up buying anything, and we headed back because my wife had a phone appointment with the doctor.
Throughout this whole process, my wife has honestly been incredible.
One thing I’ve realised is that serious illness doesn’t just affect the person going through it — it affects everyone around them.
In some ways, I think it can even feel harder for loved ones because they feel anxious, helpless, and constantly want to do more.
I’ve never been someone who is comfortable with other people doing things for me.
I find it emotionally difficult accepting help, gifts, or kindness, even though I appreciate it deeply.
My wife is very similar in that respect — we are both much more comfortable helping others than receiving support ourselves.
But the support we’ve received from family, friends, and the NHS has genuinely been heart-touching.
The NHS staff throughout this journey have been absolutely amazing, and I honestly cannot speak highly enough of them.
Family support has also meant a huge amount to both of us.
My wife has handled her stress and anxiety by staying constantly active — cleaning, organising, caring for me, and making incredibly healthy meals every day.
She has always cooked amazing food, but over the last few years, especially the last six months before diagnosis, I had drifted more towards processed and unhealthy food without really understanding why.
Now my eating habits have completely changed.
Most mornings start with Weetabix and mixed berries, along with fruit such as Gala or Braeburn apples.
Fresh salads, vegetables, berries, and healthier meals have become part of daily life again.
We’ve both reduced salt intake slightly and also cut back on sugar, although the medical advice was not to remove sugar completely.
The focus has been on balance and healthier eating rather than extremes.
Interestingly, I no longer really crave chocolate or processed foods.
Fruit now feels satisfying in the same way sweets once did.
Since potassium levels improved, I’ve also been able to start eating foods like papaya again, along with things like prunes.
Overall, my lifestyle now feels completely different from before.
A normal day now usually involves:
· Waking up early
· Taking morning medication including calcium and omeprazole
· Eating a healthy breakfast
· Doing some walking
· Completing around 20 minutes of Qigong/P-Jump wellness exercises
· Staying hydrated throughout the day
· Chanting on my beads again regularly, which I’m really enjoying
· Eating proper home-cooked meals
· Avoiding most processed or takeaway foods
Hydration has become a major focus as well, with at least two litres of water a day, often more.
Lunches are usually healthy and filling, while evening meals tend to be lighter unless I particularly fancy something more substantial.
I’m also continuing to monitor activity levels carefully.
My target remains around 4,000 steps minimum each day, although I often exceed that naturally.
The overall aim now is consistency, recovery, balance, and gradually rebuilding strength without pushing too hard.
Sunday, May 10 — Morning Update
Yesterday evening we went to my brother’s house for dinner.
We had puri, sabji, rice, and my wife also brought some homemade dokra.
I ended up eating quite a lot and also had a second cup of tea.
By the time we got home I felt completely full, although I still finished off some cheese and onion crisps later and had a couple of prunes.
Even though I had already drunk a good amount of water during the day — probably around two and a half litres — I still felt slightly dehydrated by bedtime, so I finished off the remaining water overnight and into the morning.
I only woke up once during the night, around 5am to 5:30am.
When I woke up, I took my usual early morning medication, including omeprazole to line the stomach and a calcium chew.
I also realised that one thing I haven’t really been tracking consistently is blood pressure and temperature readings at home.
So today’s readings were:
· Temperature: 36.5°C
· Blood pressure: 117/78
Both felt reassuring and stable.
Overall, things continue to feel relatively steady at the moment, and I’ll continue updating as things progress.
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