4 Weeks Since Discharge 💪

Well it had been 4 weeks since I was discharged from hospital and for the most part I am feeling pretty good with no signs of infections or anything else that might put me back in.

Plenty of fluids in hospital.

As a reminder I have been in hospital 5 times since October with a total of nearly a month in hospital. And as soon as I was discharged I began to get ill again so 4 weeks out is a major milestone for me.

All that time in hospital and probably the steroids and other medication, have taken their toll on me and I have suffered from muscle wastage and feel weak. I cannot walk very far and soon get out of of breath.

I am slowly building myself back up and am trying to get my life back to normal.

We went out last night for dinner to celebrate my wifes, Barbara’s birthday, which was a treat for both of us.

And of course treatment, scans and appointments continue.

Waiting for a scan, you can also see my brace which I wear most of the time.

I have had my third Radium 223 treatment, almost 2 weeks ago at the time of writing.

Having a cannula fitted prior to Whole Body Bone Scan and third Radium treatment.

For me it is hard to tell how effective the Radium is, I don’t seem to have any side effects which is a result and am not suffering any extra bone pain.

I am having a series of scans which will help tell if the Radium is working and should get the results at my next Outpatients appointment.

My PSA has dropped a little to 1,572 from 1,678, so a change of around minus 100, which is good news. Not sure if this is down to the Radium or not as I was warned that the Radium could cause the PSA to rise.

One change on the medication front is that the maintenance dose of Dexamethasone that I am on has gone from 0.5mg to 2mg. Partly on my request as while I was in hospital being on the higher dose seemed to help.

Of course there is a trade off with steroids as they can cause muscle wastage and in my case keep me awake so my sleep is a little disrupted. But I think overall the higher dose is beneficial for me.

One of the key differences on being discharged this time is that I want to do things whereas previously I had just about managed to get up and lie on the sofa. And so I have been doing a number of projects that I had either previously started or had wanted to start.

One of the projects I have completed.

This is all helping with my rehabilitation and getting things back to normal.

And of course one of those normal things is writing this blog and I shall try and get back to writing about things as they happen or come into my mind.

I wish you all well ❤️.

Update 4 March

Today I am back at UCLH and sat in the Nuclear Medicine department.

Cannula and a smile

Two procedures to be done today.

The first is a Whole Body Bone Scan, I have just been injected with a radioactive trace which will take about 2 hours to work its way around my body and then it’s 30 minutes in the scanner.

The scan will show my Oncology team the state of my cancer.

The second procedure is an actual cancer treatment called Radium 223 which is injected via a cannula and only takes around 10 minutes.

The Radium attacks any cancer cells it may find in my bones.
So a very radioactive day today.

Overall I am feeling much better than I have over recent months and it’s been nearly 3 weeks since I was last discharged from hospital 🏥.

Let’s hope that continues.

All the stays in hospital and the problems I went in with have taken a toll but I am slowly building myself back up and am getting on with things.

I hope the photo captures how well I feel.

First Blog of the Year 2022

Well here we are in 2022 and only 5 days into the New Year and I have already been to the hospital twice although not for anthing serious.

Yesterday was a visit to UCLH for a blood test prior to today’s visit for my Outpatients appointment.

The upshot of the appointment was that my PSA has stayed steady at 1,670 which is good. The downside was that my haemoglobin had dropped to 76 and so was classed as being low and would help explain while I was suffering from so much fatigue and tiredness.

Having had a few blood tests recently yesterday’s went into the tender part of my forearm, I was warned there might be some brusing!

So the plan is to give me a blood transfusion on Friday to bring my haemoglobin up and then a week later have the second Radium 223 treatment.

I am looking forward to the blood transfusion and really hope that it gives me a boost. Currently I can do very little and have to break tasks into small chunks of activity with rests between each chunk. I also look forward to being able to get out and about and just do normal things like the shopping or going for a coffee.

We made as much of Christmas and New Year as we could and I thank my family and friends for adapting the days so I could take part.

Since my last post I was admitted to hospital with another infection but only spent 3 days in that time as I believe we caught it earlier.

I also had another infection which showed up it a urine test and this time was prescribed antibiotics so we could treat the infection at home.

Overall it has been a rollercoaster of fatigue and tiredness with bouts of pain. I have been off my food and at times just the thought of eating makes me feel nauseous.

I am hoping that the blood transfusion will help me turn a corner and then we can just concentrate on treatment and fighting the cancer which to some extent has been neglected while the focus was on my general health.

I do apologise for the lack of writing at times but when I am feeling rough I feel less inclined to write.

I will try and do better in 2022 😉

I do hope that everyone had a Merry Christmas and I wish you all the best for 2022.

A quick visit to A & E

As I start writing this update I am sat in a chair in A & E where I have just received 2 types of antibiotics via a cannula.

I awoke yesterday feeling pretty unwell, I was tired and achy and felt feverish.

I spent most of the day on the sofa.

When I woke this morning I felt slightly better but felt that something was wrong and I needed further help. I am worried that I might have another infection and want to catch it early if I can.

After a long wait to get through to the GP Surgery I finally managed to get through and told them my problems. And while I was hoping for a home visit I was promised a call back from a doctor.

After a couple of hours the doctor called and we chatted through my concerns and symptoms. He agreed that an infection maybe highly lightly but it needed a blood test to confirm and that should be a ‘same day blood test’ and the best place to get that was in A&E!

And so we grabbed my hospital bag, just in case I ended up staying in. It has a t-shirt, underpants, bed socks a small wash kit. And some essentials like phone charger and my Kindle.

There is also a bottle of water and some protein bars to help keep my strength up!

We arrived at Princess Alexandra Hospital at around 5 pm. Barbara was there to help me check in but then we were told that it was patients only and she would have to wait outside. This is due to Covid restrictions and to protect the vulnerable people in A&E.

After about a 45 minute wait I was called forward and asked a load of questions and then a cannula was fitted.

I have lost count as to how many cannula I have had over the years!

I was then moved to a waiting area where other patients were having other infusions and treatments. I was to have two different antibiotics to start with, I think these are general antibiotics and something more specific would be given if they identify a particular infection.

The infusions were given separately and took about 20 minutes each.

Shortly after the infusion completed I was seen by a doctor who again asked more questions. And he did an initial assessment although he was still waiting on the results of the blood test.

I was returned to the waiting area and read from my Kindle for a while.

And then it was back to see the same doctor who gave me more of a physical examination.

More importantly he confirmed that my infection markers were raised and that I had an infection. In the short term, I was to have an ECG and a chest x-ray. I say short term but it was after midnight before I had the x-ray.

I was also to have some fluid via infusion to keep me hydrated.

It was starting to look like I would be admitted to the hospital so that the source of the infection could be found and treated.

I was also assessed by a doctor from the Medical Team, who again asked loads of questions and gave me a thorough examination. She also thought that I would be admitted.

And while I was hoping that I might have caught this earlier and it would be treatable by the GP or in A&E I think the hospital is the best place to be as they will do loads of tests and have laboratories on site who can turn around quick results.

So now I think the main thing I am waiting on is for a bed to become available, it could be a long wait!

I am going to finish this update here, I am still in A&E, in fact I am am now on a trolly bed about 10 metres from where I started writing the update.

I will be trying to catnap and hope I get a bed soon so I can settle down for the night.

Who knows what tomorrow will bring!

Monday Update

Well, the weekend has been and gone and following on from my Radium 223 treatment on Friday I just thought that I would write a quick update to let you all know that I am feeling pretty good.

I was very tired last night and was struggling to stay awake although that may also be that I had a fairly full weekend with a wedding on Saturday and a trip to the garden centre on Sunday. 

The Garden Centre was ready for Christmas!

OK I confess I probably over did it a bit.

But for the most part I am feeling pretty good, my knees did feel quite painful last night while I was in bed, and I had to take some paracetamol to ease the pain and discomfort and to help me sleep. 

I am putting this down to the Radium rather than walking to much as I have walked more in recent times.

My bowels are not stable but they haven’t really been stable since I have been out of hospital so I cannot blame this on the Radium, one of the side effects of Radium can be diahorrea but I wouldn’t describe it as that and hopefully as time passes then the risk of diahorrea gets less and less.

I have fine tuned my toilet activity to prevent any spillages or mishaps and then having to have a major clean up because of the radiation.  Basically, everything is done sitting down with time allowed for drainage.  Seems to be working so far and again as time passes and the radiation passes from my body this will become less of an issue although it will probably become my ‘new normal’ as I will be on Radium for the next six to nine months.

I never know whether no side effects is a good thing or not, I just hope the Radium is doing what it should be doing and we see a positive result when I next go for an Outpatients Appointment.

For now I am very happy with how things are going 🙂

Radium 223 – Treatment 1

Well today was a big day as it feels like I have been waiting to start the new Radium treatment for ages!

What is Radium 223?

Radium 223 is a mildly radioactive form of the metal radium. Radium 223 can shrink areas of cancer cells that have spread to the bone. This reduces symptoms, such as pain, and helps you feel more comfortable.

How does Radium 223 work?

Radium targets bone cancer cells. This is because it is similar to calcium, which is also absorbed by bone cells. The cancer cells in the bone take up Radium 223 and it then releases radiation which travels a very short distance. 

This means that the cancer cells receive a high dose of radiation which can destroy them. And healthy cells receive only a low dose or no radiation.

We had a midday appointment so had plenty of time to get up to the UCLH.

We passed this little old stadium on the way!!

We arrived slightly early and so nipped to a coffee shop for a nice coffee and a cake and soon I was feeling good and ready for treatment.

We made our way up to the fifth floor and the Nuclear Medicine department and after checking in it didn’t take long for my name to be called and we were taken into a room where the Radium 223 would be administered.

The procedure was to be done by a Doctor, a cannula would be fitted by a nurse and there was a scientist present to oversee safety.  There was also a registrar in attendance so a very serious procedure that is actually very simple in how it is administered.

Which is via a cannula and only takes a few moments once everything in place.

They do take great care to avoid any spillages or accidents as the clean up would need to be very carefully done and with great care.

We did notice that the staff were wearing colourful rings which are actually small radiation sensors and help monitor the amount of radiation that the nuclear medicine are exposed to.  They are sent off to a lab to monitored.

The dose administered had an activity level of (MBq) 6.27 and looked to be just a small syringeful of liquid of which every drop was used by drawing blood into the syringe and pumping it back into my arm.

And before I knew it I was putting my jacket on and we were heading home.

For the next week or so I have to be very careful when going to the toilet as effectively I would be urinating radioactive urine and so had been advised to sit whenever going to the toilet.  To be very careful with any spillages and thoroughly wash after going to the toilet.

I should also drink plenty of fluids to remain hydrated.

The main side effects are diarrhoea and sickness as well as some fatigue and initially some bone pain.  We will have to see what might happen.  Fingers crossed all will go well and I will not get any side effects.

Right now, I am pleased to be home and catching my breath, I have high hopes for this treatment and hope to avoid any serious side effects!

In terms of hospital appointments, I have a fairly quiet few weeks ahead with an outpatient’s appointment booked for the 15th December where I will also have blood tests and so on.  So apart from knowing how I feel I am not going to have any results until then.

Oncology Outpatients 17 November 2021

It’s always amazing how quickly appointments come round, no sooner am I discharged than I was booked in for my next Outpatients appointment.  Which is of course a good thing, and I am very pleased that they are being proactive.

And this was an amazing visit if for no reason than we were in and out within an hour and that included a blood test.

Today I was seeing the Lead Consultant which is sometimes good and sometimes bad as it normally falls to him to deliver the tougher news.

But as he called my name, I could almost sense him smiling behind the mask he was wearing, and I think this was down to him seeing me in good shape.

He did comment that on Monday when they held the weekly MDT (a meeting where they review patients) (Multi-Disciplinary Team) that that they were worried about how I had been in hospital and whether I would be fit for treatment.

But he was pleased to see me walking around and moving well and I think he could tell I was well on the way to rebuilding my strength.

And so, the tone of the appointment changed to something much more positive and after a quick examination he was pleased to announce that I could go ahead with the Radium 223 treatment and that they would get it booked in and aim for Friday 26th November.

Barbara and I were both smiling and so relieved to hear the good news.

This was all subject to the blood test I was about to have and so we headed down for the test and was pleased to see that there was only five people in the queue.

Because of the effects of the Radium 223 the measurements that are important have changed.

Radium 223 works on the bone Mets and so is likely to cause a spike in PSA and so that becomes a less important measurement of success.

What does become important is the blood work which of course comes from the bone marrow and again the haemoglobin is at the forefront followed by Alkaline Phosphatase and then as always, my general health and response to treatment is looked at to see how I am doing.

And it is these things I will be monitoring myself and be keeping a keen eye on.

On the haemoglobin front it has actually gone up since I was last tested in hospital which is fantastic news.  Not by much but from 112 to 117 in the week or so since I have discharged.

This might be down to two factors, the first that the blood transfusion was kicking in and secondly, I had been eating food which is good for your blood work.  I had been on a menu of red meat, liver and bacon, oily fish and so on, every little helps.

On the downside my PSA was 1,129 which has gone up from around 860 while I was in hospital.  This is hardly surprising as I am not really having any treatment at this time aside from Hormone Therapy.

At the time of writing I don’t have an up to date reading for Alkaline Phosphatase but at the start on November it was at 251 which is high and has been running high for sometime as per the graph and a few years ago was in the 700 to 800 range so it has come down alot.

So I am feeling pretty upbeat, I have had some good feedback about Radium 223 and am hopefull it will work well. As with all these treatments it does come with side effects, including diarrhoea, sickness and some bone pain and I will be doing all I can to mitigate those by going into this as fit as I can and will of course be staying as positive as I can.