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.
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.
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 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.
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.
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 🙂
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 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.
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.
Hello all, for those that are regular followers of the blog I firstly wanted to say a big thank you for the ongoing support, it really does help.
I also realise that things may have got a little confusing as to what had gone on and happened and so the point of this post is to try and summarise that into something a little simpler to follow.
The short story is
July – August Chemotherapy
August – September Immune system compromised
August September Pickup up infection
October Hospitalisation 1
November Hospitalisation 2
And in a bit more detail……
At the end of July I started on Carboplatin Chemotherapy, the plan was for six cycles but I only managed three cycles as the chemo was not having a positive effect on the cancer as shown in my rising PSA and in scans. The third and final treatment being at the end of August.
What the chemotherapy did do was to weaken and compromise my immune system and it effected my ability to produce things in my blood like Haemoglobin as well as red blood cells and the like.
This meant that I was vulnerable to infection and other things.
It would seem that sometime in September I did get an infection which was later identified as a Urinary Tract Infection based on Ecoli.
By the end of September, I was struggling to walk and was in a fair amount of pain. At this time I was not aware of the infection and thought it more of a flare up of the cancer or bones mets.
I started to take stronger medication including oral morphine which helped although it probably masked a few issues as well and also made me think it was more bone related than an infection.
By 12th October we were phoning the GP and a doctor was dispatched to visit, we also contacted UCLH and described the symptoms and they both diagnosed an infection, I was prescribed antibiotics.
By the 14th I was in even more pain and taking more medication and so I concluded it was time to go to A&E and see if they could sort me out.
And so, I went to Princess Alexandra’s Hospital in Harlow. After 24 hours in A&E I was admitted to a ward and given my own room. On the plus side I was subjected to a whole range of tests and thoroughly checked out. An infection was identified, and I start to receive intravenous antibiotics which are much better than oral as they get to work much quicker.
I was also treated for other minor symptoms like iron deficiency in my blood and so on.
Lots of fluid and other things were given.
I was discharged on the 19th October and was glad to be home.
In hindsight I had been discharged a little too early as I still had the infection, I was feeling much better but the infection was still there and this became evident after a few days when I started to feel pain again and was starting to struggle.
It got to the stage where I couldn’t wash or dress myself!
On top of this I was scheduled for a number of visits to UCLH to prepare for Radium 223 treatment.
The big problem I had was that my haemoglobin was too low to have treatment and so a blood transfusion was scheduled for 3rd November.
I duly turned up for the transfusion, feeling rough but I thought I could handle it.
I was scheduled for two units of blood which would be infused over 4 hours.
During the transfusion they regularly take your temperature and blood pressure, and it was picked up that my temperature was rising, first through 37 degrees and then into 38 degrees.
I was also starting to feel feverish with nausea.
And no sooner had they given me anti sickness tablets and I was vomiting them back up again, and a screen was drawn around me to save some of my dignity and to protect other patients.
By now I was feeling pretty rough and by all accounts I had lost the colour in my face and looked unwell.
At this it was decided that I would be admitted to UCLH as an emergency admission. They have several cancer wards at UCLH which deal with cancer related emergencies such as mine and they also deal with more rigorous cancer treatments and problems.
And so, this was the start of nine days as an inpatient, there are separate posts which go into some of the detail of what happened each day for the days that I was able to write.
And once more it was identified that I had an infection, I think the same infection and that it had never been fully treated while I was at PAH and that I was discharged from there too early.
This time I was thinking that it’s better to spend more time in hospital and get properly sorted than to rush home.
And home is where I am now trying to make sense of everything that has happened and also recover from the effects of a hospital stay and build my strength back up again.
I would like to point out that I have no reall complaints about how I was looked after and do not wish to appear critical, it is easy for me in hindsight to say things that may appear critical but I am really pleased in how I was looked after by all the NHS staff and doctors.
Later today I have a physio coming round to visit which marks the start of my return to getting back my strength and normality. 👍😁
Well today has been a successful day with the second part of the blood infusion completed and I can now mobilise 😁👍.
Hospital life started early this morning with observations, blood pressure and temperature being taken at just before 6am and my morning medication was left to be taken with breakfast.
After the slow start yesterday it was nice to have breakfast at 7.30, I opted for toast and marmalade with tea, a change to the Rice Crispies I have been having.
Early breakfast meant I could have an earlier wash albeit in bed, due to being confined to bed.
And so this meant that I was washed and sorted for when they started to prep me for the blood transfusion, yesterday was a little chaotic as they were trying to prep while I washing and trying to get sorted.
But today I was ahead of the game. The prep for the blood transfusion is taking a blood sample, checking my observations and making sure the cannula works OK.
All the prep was done and the blood was connected and set to be transfused in three hours, it’s about a third of a litre of blood so quite a slow rate and that is done to protect me.
About two thirds of the way through an excited therapist turned up from Occupational Therapy to let me know that my CT Scan had been reviewed and my bed confinement had been lifted and I could get out of bed and start moving around.
Also I would not need an additional brace or anything else, I could just go back to the previous practices I had adopted prior to admission.
Sounds easy aside from the fact I had spent the last week flat on my back!
Anyway the blood transfusion completed on schedule and the therapist returned just after lunch.
The first task was sitting up and I could feel the blood rushing from my head and a slight lightheaded wave rushed over me although after that initial wave I was feeling good.
The therapist helped me sort my gown out and get my brace on and then we were off down the corridor for a quick walk. I felt pretty good and was pleased my legs remembered how to walk.
The corridor is not long so it wasn’t a long walk but it was enough for those first steps.
I have since repeated the walk and will do another before settling down for the evening.
Overall I felt quite good although I recognise that it will take some time to get my strength back up and even longer before before I can walk Teddy again but what a goal to have 😁👍.
I have managed to spend most of the afternoon out of bed and had my evening meal sat on a chair at the table which is another positive move and one that I enjoyed.
I was also able to sit in the chair and read the newspaper and a couple of magazines, have you ever tried reading a newspaper flat on your back, it can be done but it can be a struggle at times especially when the paper fights back 😅 😉.
And so there are hopes I can head home tomorrow. There is still one last hurdle to be cleared and that is I still have a catheter fitted and that will probably be removed in the morning once they are confident I can make it to and from the bathroom. A journey I have already completed 👍.
And once the catheter has been removed we need time to go to the toilet several times and make sure everything works as it should.
So with all my fingers and toes crossed I could be heading home late tomorrow afternoon or early evening 🤞🤞🤞🤞
For me the main thing is to be heading home in the best possible shape so I do not get readmitted in another couple of weeks. I already have an Outpatients appointment booked for next Wednesday where I think we will be talking about next steps.
Well as day 7 draws to close it has been a positive day with some steps forward.
The main thing was that I managed to have one unit of blood as part of the transfusion and there was no reaction. So a real result 👍.
I must confess that the thought of a blood transfusion has made me a little, not quesy, but perhaps more mindful of what is going into me and where it has come from. I have had lots of medication in drips, infusions and injections but these are mostly, as far as I am aware made in a lab whereas the blood is very much donated. Very kindly donated I might add.
I also manage to get the CT Scan on my spine done although it is still to be reviewed by the neurosurgery team and so that means I am still confined to bed.
Getting out of bed is a major milestone and a step towards getting home and that all important next treatment. It also means that things like the catheter can be removed and I can confirm I can toilet normally.
I learnt a new abbreviation today, TWOC or Trial Without Catheter. So basically just normal toilet function.
I had to interupt the doctor to ask what TWOC meant, sometimes they forget they are talking code when they talk in front of patients, I know why they do it but they do need to involve and explain to us patients.
So there has been a fair bit of sitting around, which is most of my day, the blood transfusion took three hours where I had to sit fairly still to prevent the infusion pump going into alarm.
And I feel I have been waiting all day to hear about the CT Scan, that wait goes on!
The highlight of the day was of course a visit from Barbara who as well as bringing a tasty strawberry 🍓 tart also brought her smile and stories of home.
She also took the next couple of photos of the view and crackers they are too.
So spirits are high and I feel there has been positive movements today. It is unlikely that I will be discharged before Thursday or Friday now which ok as it means I will go home in a better state.
I don’t especially want to spent another weekend here as for the most part I would be in a bit of a limbo state. So fingers crossed 🤞.
I am now approaching my 6th night in hospital and the days are starting to blur one into another.
In many ways it had been a bit of a frustrating day as I have been told I would have part of the blood transfusion today and a CT scan and as I write it is 5.45 pm and neither have happened!
On the blood transfusion someone has been round and taken blood for crossmatching so I would hope the transfusion goes ahead.
And as an inpatient they can come and collect you at any time for scans and xrays.
I will probably get hooked up for the transfusion and they will turn up for the scan!
I don’t know what hours they work in the different departments but it was fairly quiet over the weekend but I suppose both could still happen?
I am in a bay of four people so people come and go and you get to hear their stories; some very similar to my own and others very different.
I have a great view of London from the window but haven’t been able to make much of it while I am confined to bed. What I can see is the dawn getting brighter and more recently the dark of the evening coming on and the tops of tower blocks lighting up.
So I will post this rather dull update and if I do get either the blood transfusion or CT scan I will let you know.
Sorry if this sounds a bit down but it is more boredom more than anything. I am so looking forward to getting our of bed and being able to move around a bit more!