Monday 30th June

Good morning everyone, I hope you had a great weekend.

I didn’t sleep too well, it was very hot. Woke up a little tired, breakfast, stretches and shower, finalise my packing and now contacting the hospital. Sadly no time for a bike ride.

The research team are working with the bed manager to get me a bed as a priority, there should be a few discharges today so they should be calling me soon.

I’m still waiting, just made a quick lunch, you never know when they’ll call so I’ve just got to get on with things.

Well, I finally have a bed, in a different location to last time, this time in the main hospital, but a bed is a bed and it allows for the treatment to begin. As for my 24 hour urine sample, that’s now null and void so I’ve had to start another one, no way will I be peeing as much as yesterday, I never have liquids after 7.30pm and this current sample started at 4.30pm and it will stop at 12.30pm so it’s 20 rather than 24 hour.

The bed is available from 8pm so once we’ve sorted ourselves out, we’ll be on our way.

We have arrived, parked on hospital grounds and am on the 16th floor with lovely views.

I’ve added to my container and now waiting for the nurse.

Nurse has been, she came with a container of water and to tell me she will be back to take blood and general checks and the doctor will be round later to check on me.

4 tubes of blood taken, weight, height, bp and also an ecg.

No idea what time the doctor will visit, not even sure if they will.

I’m tired now, time for sleep, I’ll wake up if the doctor arrives. All the fun starts tomorrow!!

Good night all, sleep well.

❤️🙏🏽

Tuesday 1st July

Good morning everyone, I hope you had a great evening.

I had an okay sleep, so cold with the air con, there’s no way of switching it off, I can only make it colder, this is to kill all known viruses. So far I have 3 thin blue blankets, I think I may need a couple more.

On call doctor came to visit at around 11.30pm, he ran through my current medication, what tests I will be having, this is where we reminded him that we’ve had them when we arrived. If all test results are good then it’s full steam ahead for the treatment to start.

Breakfast hasn’t arrived yet and I’m getting peckish. For those in the know, 1 container has been filled, only 4 hours to go until I can stop.

Breakfast was a bowl of porridge and my usual tablets. No exercises for the next 10 days.

Showered and now a day of doing nothing!!! TV signal is hit and miss, Dr N has pinched my glasses so I apologise for any spelling mistakes.

Glasses are on, daily checks completed, weight, bp and pulse, today they took 7 tubes of blood, the nurse taking the blood was a true expert, 7 tubes in less than a minute!!

Lunch was nice, filled a hole.

Nurse came to insert a cannula, he tried twice but sadly failed both times, between you and me, he didn’t have the confidence, I’m sure I didn’t make him nervous with my banter. Treatment begins soon.

Dr N is having a holiday.

Well, there will be no treatment today, apparently the drug hasn’t been delivered to the hospital, it’s been in transit from the manufacturer but where is it? The trial team is pursuing the issue with the trial head office and the drug manufacturer, I’ll be given an update as soon as the trial team know what’s happening. All I know is that I’ll be having more blood tests and no I really don’t want another 24 hour urine test!! Time to go for a walk as nothing else is happening today.

Update: treatment will start on Thursday, not sure what time, the pharmacy is receiving the drug at 9am, they then have to prepare it so however long that takes. All this means everything is delayed, I will be spending more time in hospital and I have a day of rest tomorrow.

To make the best of a day without treatment, we went for a walk, managed a distance of 4 miles which isn’t too bad, made it back for dinner and then rest.

Time for bed, I’m feeling tired, I should get to know the new treatment timetable tomorrow.

Good night all, sleep well.

❤️🙏🏽

Wednesday 2nd July

Good morning everyone, I hope your week is going well.

I slept well, could have done with another hour. Woken up very early for morning checks, bp, temp and heart rate, couldn’t really get back to sleep. Second pee of the day started my 24 hour sample, I’m building up a row of containers like whisky casks with different vintages.

Breakfast was porridge and coffee, shower soon and it won’t be too long before the trial team are in contact. The views from the room are spectacular, shame about the rain and overcast weather.

I had a visit from a nurse who treated me during my stem cell transplant, she remembered us is now married, such a lovely couple, she’s coming back to show us her wedding photos, yep, she’s Indian 😜.

There’s been a hive of activity in my room this morning, after the nurse came and went, a haematology doctor came in to see how I’m doing, he informed us that the drug is now in the building and all systems are go for treatment to start tomorrow, the trial team will contact me today to tell me the schedule. After him, another nurse came in to do my ops, bp, heart rate and temp, all good, the cleaner then arrived, while she was doing her things, the pharmacist came in to talk about my current meds and how I’m doing.

It’s midday and my lunch has arrived, after that I’ll contact me trial team myself because I need to go for a walk!!!

The trial nurse arrived and reported that the drugs are still in transit and will arrive tomorrow morning. As requested she also brought me another urine container!! I now have a preliminary schedule, treatment tomorrow, monitor days are Friday, Saturday and Sunday, treatment on Monday, monitor days are Tuesday and Wednesday then treatment on Thursday, monitor Friday with the potential to go home on Saturday!!! All this depends on how I respond to the treatment.

We went for a walk, lovely day, walked a distance of 2.5 miles, stopped for a coffee and hot chocolate. Back at the hospital, I decided we should walk from the ground floor up to the 16th floor. Dr N managed 7 floors, I got up to the 16 floor, it only took me 6 minutes, all the cycling must have helped.

Back in my room, I need to drink much more water, I haven’t been drink in much today.

I’ve made up the water drinking, about to start my second container. It’s turning out to be a lovely evening. Dr N has had to go home, I’m now on my lonesome.

Dinner has been eaten, now I’ll keep drinking and relaxing, ready for my tests and treatment tomorrow.

Time for bed, final obs done for the day, head nurse paid me a visit and said they’ll be coming for blood at around 7.30am so I want to be up and showered by then. Fab sunset today!!

Good night all, sleep well.

❤️🙏🏽

Thursday 3rd July

Good morning everyone, I hope you’re well.

I slept well, so cold, I’ve got 5 things blue blankets to try and keep me warm. The nurse knocked on my door just before 6am for my morning obs, I didn’t get back to sleep after that so I got up, brushed my teeth, showered and I’m ready and waiting for my breakfast before 7am. I’m glad to say my final contribution to the container happened just after 6am, I have until 7.30am to add more.

Today is the day, providing the drugs arrive and enter the pharmacy, I won’t be told until after 9am.

Bloods taken, 2 tubes this morning, I think more will be taken later.

Porridge, banana and hot water for breakfast.

It’s surprising who you meet, the man changing my bed sheets has just returned from Palestine, he was there to visit his family, they’re all safe and well, he had a journey and a half to get back to the UK, he came back via Sharm, lovely man.

Obs done again, bp 126/73, bpm 69, weight is coming down due to me not eating any snacks which I’m happy about. All good.

Doc has been to see me, he’s carried out the preliminary tests - what year are we in, what month, what building am I in, the name of the hospital, close my eyes and touch my head with my left hand, count down from 100 taking away 10 each time, I then had to write a sentence so he could see my handwriting and finally he listened to my chest. I’m all good and ready. No one knows if the drug has been delivered, everyone is waiting for an update.

Oh yeah, I’m not allowed to go out of the ward yet.

What a palaver, the drugs are at customs, no one knows if they will be released today, if they’re not released by 5pm then they will send me home and bring me back on Sunday if a bed becomes available, I will be on the VIP priority list, that’s just their normal list I think. So I have to wait until 5 to see what my fate will be. If I go home then they have to dispose of 10 litres of urine 😂😂😂 BUT I’ll have to do another 24 hour urine sample starting on Saturday morning, all fun isn’t it.

Update: drugs are at LHR customs and have not yet been cleared so I can go home and they will call me tomorrow with an update and when I need to come back in to hospital.

I’m home, tired, not surprising because I did go for a 3 mile walk after lunch, I had to get out of the room. I’ve stretched my legs in the back garden by hitting a few golf chip shots, not time to rest.

Time for some much needed sleep, what a few days it’s been with more still to come.

Good night all, sleep well.

❤️🙏🏽

Friday 4th July

Good morning everyone, I hope you’ve had a good week.

I didn’t sleep too well, woke up very early feeling tired. No exercises, just breakfast, shower and a few chores before our window replacement company arrive.

I should receive a phone call from the trial team with an update, they’re just waiting for the drug to arrive at the hospital, once it’s there, the bed manager can schedule my return to hospital.

Still no idea whether the drug has been released by customs however, I think I may be admitted on Sunday evening, nothing confirmed yet.

I’ve spent the day resting, for some reason tiredness has been dominating today, so I’ve just spent the day reading a book.

Time for bed, I just need deep restful sleep.

Good night all, sleep well.

❤️🙏🏽

Saturday 5th July

Good morning everyone, I hope you’re ready for the weekend.

I slept well, much needed, woke up a little tired, could have done with a couple more hours, had get up at 6.30am to get prepared for the window fitters. No time for exercise, I’m really missing the routine, may have to go for a walk once the fitters finish. Breakfast, shower and now just pottering around while the fitters do their work.

The windows are fitted, it’s been a hectic evening moving all the furniture back and general tidy up. I have been tired today, just glad I also rested. I have to go for a walk tomorrow but the weather doesn’t look too good, I may get on my bike, let’s see how I sleep and how I feel when I wake up.

Tiredness has really kicked in and so it’s time for bed.

Good night all, sleep well.

❤️🙏🏽

Sunday 6th July

Good afternoon everyone, I hope your weekend is going well.

I slept well, woke up feeling tired, breakfast, bike ride, I managed 30 minutes, I really had to push myself, I was feeling so tired, then full stretches, haircut and shower.

I had a call from the bed manager to inform me they have a bed for me, again on the 16th floor, this time they have allocated me room 8. Now I’m finishing my packing, just putting all of my washed clothes back into the suitcase. We’ll leave after a late lunch.

We departed early afternoon, journey in was easy, no traffic. Parking on the hospital grounds.

I’ve checked in and am relaxing in my room. Nurse has taken my bp, pulse, weight and taken swabs to make sure I’m infectious free.

Watching cricket on my laptop.

Nice win by India!!!

Doctor has come and gone, he checked to make sure I’m ok and just genera check about my medication.

We went for a walk after the rain stopped, just over a mile, lots of tourists and students walking around. We’re back at the hospital now, just rest and relaxation for the evening. Dr N will go home soon, she has work tomorrow.

There’s been a hive of activity in my room, nurse and his trainee came to take an ecg, then another nurse to take bloods, 4 tubes I think, and finally my medication for the evening.

Dr N is on her way home, her journey should be traffic free. Reached safe and well.

Obs have just been completed, nothing more this evening, next obs are at 6am.

I’m feeling tired and sleepy, it’s been a busy day, time for sleep, wake up rested and ready for action.

Good night all, sleep well.

❤️🙏🏽

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My treatment journey so far.