A Good Nights Sleep

One thing I have been experiencing since starting on Dexamethasone is that I have been having trouble sleeping. I normally fall asleep at bedtime but then wake an hour or two later and have trouble getting back to sleep.

It is in part down to the drug and part down the racing mind or monkey brain. But once awake I feel alert and to some extent not tired.

However over the course of days the fatigue builds up and I could sense my mind slowing, my coordination was a little off and other effects of fatigue.

Barbara also said I looked tired.

So last night I took a sleeping pill, 7.5mg Zoplicone.

I took it about 9pm as I was feeling sleepy and would watch TV for about an hour.

Come bedtime I was feeling really tired and was soon settling down.

And then suddenly it was 7am and I feel great, I feel like I had a really good nights sleep and am now recharged and ready for the day.

I didn’t sleep right through, I got up at about 1pm for a wee but went straight back to sleep again.

I don’t like taking sleeping pills but every now and then you need a good sleep boost.

Now what shall I do today πŸ˜πŸ‘.

Roasting Hot Today

And heading back to UCLH for an Oncology Outpatients appointment to review where we are.

There is a lot to review after the stay in hospital and radiotherapy last week.

I also need to get my head around all the scan results that I had previously had.

But for now it’s getting to the hospital and dealing with the heat.

The journey wasn’t too bad and we made good time. Got to the hospital and had a quick blood test.

Looking at the computer it would seem I have had 32 blood tests at UCLH, which is quite a few. On top of that I have probably had another 20 or more at Princess Alexandra and local all in the space of two and a half years or so.

Blood test done it was off for some breakfast.

Soon we back at the reception and in time for a quick check over with Danny and Ilona the research nurses who took all the usual blood pressure etc.

We were actually called forward almost on time, one of the advantages of an early appointment.

So we had a fairly good chat today and covered a fair bit of ground.

The bottom line is that the cancer is progressing at a fair rate with new sites both on bones and in soft tissue as evidenced by the PET Scan.

It also showed bone mets in my skull but as no previous scan exists we do not know if these are new or not.

On the plus side I have no head or brain issues aside from a slight fog which I put down to treatment.

On the Lutetium front it turns out that you cannot have it within 4 weeks of radiotherapy so that gives us a bit of a timeline.

I should be referred tomorrow and will hopefully get to see a specialist next week with a view to getting the first treatment as soon possible after the 4 weeks is up.

I am very keen to get this treatment started with the hope it will slow things down or even improve my condition.

My PSA is currently 449 which is high but no longer sure how relevant this really is. I guess it is just another indicator to be used alongside

In the meantime I am going to stay on Dexamethasone but a smaller dose and also the morphine slow release tablet but with a view to only taking it at night and using the Oramorph as a pain relief backup if needed.

So bad news and good news.

And I am not sure how I feel.

I am naturally optimistic and want to keep happy and make the most of life but it can be tough.

Dexamethasone

I have taken Dexamethasone previously when I first had chemotherapy back in 2017, it was there to support the Docetaxel although I never really paid much attention to it.

And I have had Prednisolone as well recently.

The Dexamethasone is a much stronger Steroid than the Prednisolone and I am certainly feeling the effects of it.

It does give you a lift in terms of energy and general wellbeing and I am sure it is also doing other things that I am not aware of.

It certainly seems to have helped with some of the pain and mobility issues I was having with my legs but is hard to judge how much given that I had radiotherapy as well.

It is a cancer treatment so I really hope it is doing some good on that front.

The main negative side effect for me is that I have been waking very early in the morning, around 5am, and feeling wide awake.

I haven’t been tired during the day but it just doesn’t seem like enough sleep and rest to help me recover from recent events.

The question is will I be staying on Dexamethasone for the foreseeable future?

Physio

By way of a change I had a physio appointment today, it had been referred by the physio at UCLH.

The appointment was at the local Herts & Essex hospital which was handy as it was local.

I met with a very nice physio called Kim who started with some Q & A to assess my condition as not much info had come through with the referral.

She then gave me an examination.

She also measured me up for a walking stick and decided that I needed a longer one.

She then showed me how best to walk with both a single stick and two sticks.

This will test my coordination!

She also gave me some exercises to do.

The upshot is that I should use the stick for longer walks and over rougher ground but should also be looking to not use it all the time.

So I think the trick is about balance and not over doing it and returning to full strength.

Radiotherapy Number 5

We were lucky getting on the train today, it was just pulling in as we got there.

A little too close for comfort!

Hopefully it is just plain sailing from here on in.

I am glad it is the last treatment today, it has felt like a long week with all my time thinking about when the next appointment is.

And what would you expect for a Friday, one of the machines was being serviced and there was a 45 minute delay.

So we sat and waited.

The treatment was as quick as usual with both sites being zapped. It takes longer to get you into position than it does to do the treatment but I guess this is key to getting the radiation to the right place.

On the screens there are loads of numbers all to do with position, mind boggling for me but I am sure it is all meaningful to the radiographers.

Anyway, last treatment done and Barbara and I are heading away for the weekend.

Looking forward to a nice relaxing weekend.

Radiotherapy Number 4

On the train again heading to London and UCLH for Number 4.

It’s a 5.40pm appointment today which is later than I would like and probably means we won’t be home until around 8pm.

Still if this is all I can moan about then it’s a good thing πŸ‘πŸ˜.

Feeling a lot better but still using the walking stick to provide some support to my legs. Had a little back pain but with the slow release Morphine and a top up of paracetamol I seem to be one top of it.

Appointment run over as expected, in fact I may have been the last person in.

It’s done now with one to goπŸ‘.

Radiotherapy Number 3

Back at UCLH.

We have it fine tuned getting to and from the hospital now.

Let’s hope the treatment goes smoothly.

I have taken my anti sickness tablet that seemed to have worked well yesterday.

So fingers crossed 🀞.

There was a bit of a delay today, they were running behind schedule, that’s the problem with the later appointments.

Tomorrow’s is even later so who knows what that will bring.

The treatment itself was quick and uneventful.

I can’t imagine how people who do six weeks of radiotherapy cope, it’s not so much the treatment but appointment times and getting to and from the hospital.

Well more than halfway through, number four tomorrow πŸ‘.

Radiotherapy Number 2

Back at UCLH today for treatment number 2.

Hopefully I am better prepared, I have taken an anti sickness tablet called Ondansetron which I hope will get me home ok.

The treatment itself was much quicker today as they did not need to take any X Rays and I was in and out fairly quickly.

I am also please to report that the anti sickness tablets seemed to have worked with no side effects to mention.

Fingers crossed that it will be plain sailing for the next 3 treatments🀞.

Radiotherapy Number 1 – update

Well the treatment went well but the drive home was another matter!

We decided to get an Uber home and it was actually a very nice car.

We wiggled through the streets northbound away from the hospital.

We had just reached the North Circular Road when I started to feel sick. Not a rumbling but a feeling in my stomach.

I hoped it would pass.

As we neared the M11 I asked Barbara if she had a carrier bag in her bag, she gave me a strange look until I explained.

She then produced a poo bag from her pocket, at least I had a bag if the worst happened.

We drove up the M11 and I was feeling worse.

As we passed the Harlow turnoff I asked the driver to pull onto the Hard Shoulder.

He had barely stopped and I was out of the car retching over the crash barrier!

I threw up a couple of times, just a clear fluid, not a carrot in sight!

What were people thinking as they sped past?

I regained my composure and got back into the car.

Not far to home and thats where I wanted to be.

I managed to make it home without a repeat incident.

I have since eaten and while I feel pretty rough and tired I don’t think I will be sick again🀞.

Did I receive a big dose of radiation today, I don’t know but it’s never effected me like this before, I shall discuss it tomorrow with the Radiographer.

For now it’s bed for me, I feel done in.

πŸ’€πŸ’€πŸ’€

Radiotherapy Number 1

Back to UCLH today for the first of five Radiotherapy Treatments. Not my first Radiotherapy and in fact it’s my third set having been treated before at the North Middlesex Hospital and UCLH.

My appointment time is 5pm so a bit late in the day for my liking but the train is fairly empty which is good.

The annoying thing is I got a phone call from the radiotherapy department asking me if I would be there for 4.30pm! They have no concept that people need to travel in and we aim for the appointment times given.

Previously I have tolerated Radiotherapy pretty well so I am hoping it will be the same again.

The main difference this time is they are targeting two sites on my spine so I guess that means a double dose?

We arrived promptly at 5pm and was soon called forward to wait in another area.

We were given a quick briefing and a chance to ask questions.

I asked about the double dose and the radiographer said it was not a double but two single doses.

I guess there is a difference but not that I can understand πŸ€”.

Soon I was called into the room with the machine!

Nice lighting with The XX playing in the background, very relaxing.

Because I was having two sites treated I would go through the process of positioning, X Ray and treatment twice.

It was fairly quick and easy and you don’t feel nothing during treatment.

Did it really happen?

Then it was time to get dressed and I was given my schedule for the week.

1 down 4 to goπŸ‘.