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.
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.
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!
Once again I am sorry for being quiet but the title gives the reason away.
On Wednesday I was at the Macmillan Cancer Center for a blood transfusion as my red blood cell production is down and in particular the haemoglobin.
As you may recall I had recently been in hospital with a Urinary Tract Infection and I think this had not been fully cured as I was starting to feel very rough and had to use a wheel chair.
And so back to Wednesday, after the first unit of blood had been infused I developed a high temperature and was vomiting so the transfusion was stopped and I was admitted to the hospital where I remain as I write.
I am overall feeling much better thanks to lots of steroids, antibiotics and fluids etc.
The infection I have has been identified and I am of course to defeat the bacteria causing the infection.
I am likely to be in hospital until Tuesday but nothing is for sure at the moment. I would sooner stay in longer and go home fully cured than risk another flare up in a couple of weeks time.
I will try and fill in the blanks and expand the detail once I am home and better able to focus the brain.
A busy couple of days last week with a trip to London and ULCH for my Oncology Outpatients appointment on the Wednesday and then this was followed by Chemotherapy on the Friday.
The outpatients appointment went well although I had to wait about an hour to be seen and as I had a relatively early appointment, 09.40, I though I may have been seen more promptly. The appointment didn’t last more than 10 minutes and was really just a quick review to see how I had been since my last chemo on the 13th of August.
For which the answer was I had been OK, the severe attacks of pain I had suffered after round 1 had not returned and apart from being tired I had been OK.
We did discuss having another PSMA PET Scan which will help tell whether the Carboplatin is working or not and I have asked for this to be after the 20th of September as we are going away until then.
But given my rise in PSA I am thinking that the Carboplatin is not working. More about that later.
So the other two things I had to do while I was at the hospital was to have a Covid PCR Swab test prior to having treatment and also a blood test.
And while these two things are done in the same place there are two queues, more time sitting and waiting!
I was called forward fairly quickly for the covid test but had to wait about an hour for the blood test.
And with all these things done I headed home.
On Thursday I got the results on the blood test which for the most part was OK, some areas like my red cell count were low but only slightly and nothing to worry about really.
My Alkaline phosphatase levels were a little high at 274 for which the standard range is 40 to 129. Alkaline phosphatase gives an indication of cancer activity in the bones so a little worrying that it is climbing.
Of more concern though is my rising PSA which has now gone up to 646 from 396 so a rise of 250 in 3 weeks!
So while we are not near the highs of 2019 the PSA is climbing and two rounds of Carboplatin don’t seem to be holding it down. So the PSMA PET Scan will be the big test and show what is going on.
On the plus side I feel well apart from the side effects of the chemo, I am still walking and enjoying life and getting out and doing things. My appetite is good and I enjoy the odd beer now and then.
So now it is really a waiting game to see what the scan shows and what treatment may follow and at this time that is most likely going to be Radium 223.
So Friday came and Barbara and I headed to London, she is still not allowed in while I have treatment but it is comforting having her with me for support and we also manage to have a quick lunch in Pret which was a treat for both of us.
As well as having Chemotherapy I was also to have my Zoledronic Acid infusion which is a few weeks over due, they have been focussing on the chemo and let the Zoledronic Acid slip a little.
The Zoledronic Acid is to strengthen my bones so I am pleased to be back on it as it will help keep me healthy.
Overall the treatment went well and once the cannula is in it is pretty straight forward, I have some pre meds, anti sickness, Domperidone and 8mg of Dexamethasone steroid. The downside of the steroid is that it makes me a little hyper and stops me from sleeping, they also cause some constipation and so I have that to look forward to!!
And before long we were heading home. Lot’s to think about but we have a short holiday coming up to North Wales and so will get a chance to have a break and change of scenary and also recharge the batteries for any coming challenges.
Well, it’s a full and busy day at the hospital today in preparation for starting chemotherapy on Friday.
Before having any treatment at UCLH you now need to have a Covid Swab Test done at the hospital which is understandable. What I don’t fully understand is why you don’t need the test for scans and other tests. So, this is another reason to be here twice in a week.
On arrival I headed for the Blood Test department and booked in for my Covid Test, as it was early, I only waited a few minutes before I was called in for my blood test. The phlebotomist had barely got the needle in my arm when the receptionist appeared and said I was in the wrong place as I was booked into something called “The Pod”.
So, without hesitation the Phlebotomist pulled out the needle and aborted taking my blood which seemed a bit strange as she had completed the painful and difficult part of the process and could have soon drawn my blood as well!!
I was thinking that today I will be a human pin cushion!!
I got myself sorted and made my way upstairs to “The Pod” which was a portacabin type building setup just outside the exit doors. I was met by the nurse who was going to take my blood and do the covid swab. He wasn’t quite sure why I was booked into the pod, but I suspect someone had made an error while booking me in and booked me into the wrong place.
Anyway, the covid test and the blood test then went smoothly although by now I had two plasters on my arms where the different needles had been put into my arm.
Then it was off for my outpatient’s appointment, I had my eye on the coffee stand and a Flat White but thought I should head up for the appointment.
The outpatient’s appointment went fairly smoothly and was just a simple check up to see how I was feeling and to get me to sign the consent form for chemotherapy.
Job done it was now time to head for the main building and the Nuclear Medicine department where I was going to have the GFR Estimation 3 Sample Scan.
Once again, I eyed the coffee stand but I knew there was another one in the main building so off I went only to discover that the coffee stand in the main building was closed!!
It was too far to go back and so I headed up to Nuclear Medicine and checked in and while the procedure is called a scan it’s not.
What happens is that I was injected with a radioactive source and then had to wait 2 hours while the source circulates around my body and then they would take 3 blood samples each an hour apart. The 3 different blood tests are then compared and from that comparison they can work out the strength of the chemotherapy I can have.
GFR stands for Glomerular Filtration Rate and is a test which measures Urine Albumin which is a protein in that is filtered by the kidneys and so by measuring the amount of Albumin over the 3 different blood tests they can work out how well my kidneys are working and how much chemo I can have. The radioactive source enhances the test and they can see how fast the radioactive source is being processed by my kidneys.
I hope that makes sense?
This is the first time I have been through this process and so it must be something that they do when using Carboplatin the chemo I was going to have this time.
Back to being a human pin cushion!
What the process also meant was that I was to have 2 cannulas fitted, one to inject the radioactive source and the other to be used to take the three different blood samples.
I was fitted with one in my left hand and the radioactive source was administered and then the cannula was removed.
I was then told I could do what I wanted for the next 2 hours while we wait for the source to circulate and so I thought it was coffee time! Only to be told no tea or coffee, I needed to be caffeine free!!
I checked the map and looked for a nearby park to sit in and read my book for an hour. I found a park called Gordon Square which was nearby and found a shady spot to read.
As an aside the book I am currently reading is “The Stand” by Stephen King, which is about a global pandemic, quite topical for a book first published in 1978!!
Time passed quickly and soon it was time to head back to the hospital another cannula and the first of my blood samples to be taken and then it was a case of waiting an hour for the next sample and so on. I couldn’t go far and so read and dozed in between the samples being taken.
Finally, the third sample was taken, and it was time to head home, it felt like a long day and I was feeling a little tired, I also had four plasters where the different needles had been. I call these sympathy plasters as they will get me a few minutes of sympathy when I get home!!
I would soon be home and be able to rest before returning on Friday.
Well, it took a week but I finally got my blood test results back from the blood test I had on 8th March. Not sure why it took so long but I suspect that it took time to be reviewed and processed at the GP’s Surgery.
And there is good news and bad news!
The bad news is that my PSA had gone up from 163 to 241, a rise of 78 when I was expecting it to go down following on from the Lutetium treatment. I had really hoped that the Lutetium would knock it down as it had done in the past.
On the plus side, for the most part I feel fit and healthy.
I have forwarded the results onto UCLH and will see what they say on the 24th March when I have my next outpatients call.
The rest of my blood work looked ok to me apart from a few things which looked a little low or a little high in one case.
Serum calcium level 2.11 mmol/L [2.2 – 2.6]
Haemoglobin concentration 116 g/L [130.0 – 180.0]
Red blood cell count 4.29 10*12/L [4.5 – 5.5]
Serum cholesterol/HDL ratio 4.46 [< 4.0]
Now I don’t know what this means, but it looks like my blood count is down a little and that maybe due to the Lutetium.
I don’t know how this may affect the thinking around having another Lutetium Treatment in April but for myself I think it would be worth it but of course I need to listen to advice.
I have done a graph to help track my PSA, I think it tells an interesting story. It shows that the Docetaxel that I had first of all really made a great impact as did the first set of Lutetium treatments that I had.
Everything else has been less effective although there is nothing that shows what effect the Hormone Therapy may or may not be having as I have been on that consistently since being first diagnosed.
I do wonder how long it took my PSA to reach 226 when I was first diagnosed and how that could have been caught earlier, I am sure it didn’t climb to 226 overnight and probably took a few years or more.
I do think that had I been tested early, perhaps when I was 50 then the disease may have been caught earlier and I would have been a much simpler case to treat.
But that is hindsight and for now I need to focus on treating the current problem and on staying fit and healthy.