Ok so just had my Oncology Outpatients telephone call.
In this case it was not as good as face to face as we were discussing the PSMA PET Scan that I had on the 26th January and I felt that if I would have been in the hospital I would have been able to see the image and better relate to it. That said it is much safer do the appointment this way rather than going into the hospital.
I cannot really be sent an image of the scan as it is three dimensional and needs special software to be seen.
The scan did show an uptake in activity around the area’s that had previously shown that they had cancer in them, so parts of the spine, the hips, the pelvis, back of skull which is not great news but on the plus side it did not show any new sites or much activity in soft tissue, the lymph nodes and the like.
My PSA has risen to 182 up from 150 on the 4th January and so they feel that having the remaining 2 treatments of Lutetium is more urgent and are going to look at getting that booked in.
I also said that I was experiencing increased back pain and some pins and needles in my right big toe and so they are going to send me for a MRI Scan to look in more detail at that area in my spine.
The pins and needles in my toe might indicate some kind of Spinal Cord Compression which may be caused by the increased activity in my spine.
I have had pins and needles in my left big toe for some time but that is put down to the Vertebroplasty procedure causing a little pressure on the nerves and in many ways, I had grown used to it.
I have been experiencing a few more aches and pains over the last couple of weeks but not sure if that is because I have been walking a little more or whether I have over done it somewhere or is it the effects of the increased activity. No one knows at this point.
So Now I have another telephone call booked for next Wednesday with hopefully a MRI before that. Normally scan’s take longer to get booked in so I would be surprised if I have had it before next Wednesday! But you never know 😉
I also asked again about the PSMA BiTE Therapy which was mentioned as a trial at my last appointment, and it was felt that it was better to do the Lutetium first and then look at trials.
So for now it is time to wait for the next scan and see what that shows.
Cancer certainly is a waiting game, always waiting for the next scan, the next appointment and so on.
Well I was busy doing something (or nothing 🤔) when my phone beeped indicating that I had just received a text message. I don’t get many text messages anymore and so was curious as to who was texting me?
I checked my phone and was pleasantly surprised to see that it was a text message from my GP Surgery inviting me to have my Covid Vaccination.
There was a link to a website and I was able to select a date and time that suited me.
Nice and easy 👍.
So next Friday I will be off to the local football ground for my first vaccination. I will let you know how it goes.
Well it’s a Monday morning and there is snow on the ground and ice on the roads and I have to head to the GP’s surgery for my 15th Prostap Injection.
While there was ice on the road outside our house once I got onto the bigger roads the ice was gone and the journey was much easier.
Hence I arrived at the surgery early and I knew they were not keen to let people in early so I spent a few minutes in the car waiting.
Closer to my appointment time I made my way to the surgery. They have a video camera doirbell at the door and so you are screened before they let you enter the surgery.
Once inside it was only a short wait until the nurse called for me. It was the same nurse who had done my last injection and she had recorded which side she had administered the injection and so she would be injecting my on the right side of my stomach.
The needle was quickly inserted and the injection was done and it was time to head home.
I do tend to suffer from more hot flushes for a week or so after the injection but then it settles down a bit.
So I was up bright and early today for my ride into London and my appointment at the London Clinic near Regents Park. The roads did seemed a little bit busier to me with more traffic on the roads and definitely more pedestrians in London although the journey was much quicker than normal the city did feel busier.
I arrived at the hospital just before 9 a.m. and went inside to see that all the Covid precautions were still in place, with hand sanitation stations near the door and screens around the reception staff. I was soon checked in and directed upstairs to my room although before heading up I headed off to the coffee shop for a flat white, a nice treat for me to have and a decent coffee made by someone else.
I got to my room and settled in and soon the nurses turned up to do my observations, my blood pressure, temperature and weight.
Another nurse came in and fitted the cannula and she also took some blood for the blood test. Things were going quick this morning as she was followed by the catering lady who took my breakfast order.
And then it was time for something new, it was time for the Covid 19 Test. The nurse that was doing it was not a fully qualified nurse but a nursing assistant although I was happy for that person to do the test as they need to get the practice in.
The test consists of putting in a swab up and to the back of your nose and another swab into the back of your throat, not a very pleasant experience but very necessary. Hopefully the results will be back shortly and will tell whether I have coronavirus or not.
I was then informed that treatment would not start until after both the blood test and the Covid test came back from the lab which takes about 90 minutes. I kind of understand waiting for the blood test although I did have one only a week ago. But the Covid test seems slightly out of sequence, surely part of the reason for doing that is to protect staff and I have already seen a number of those and even more if you include reception staff and those at the coffee shop?
Only one thing for it, I will have a snooze 💤💤!
And then suddenly everything changed and it was all systems go, the nurse was in to hook me up to the drip and start introducing the saline solution, I also had add a visit from the radiography consultant who asked me a few questions before saying we could go ahead with the treatment.
Treatment only takes about 30-minutes but today it took three people although one of them was just here to see what happened and you can see a picture of the trolley with all the equipment on it it although they were visiting another patient after me.
Once the treatment was over I had a chat with the consultant about future steps. The feeling is is that the next step is to have a PSMA PET scan in a couple of months time to see how things are inside. Because the PSA is continuing to drop she is confident that the treatment is working well but the scan will help to clarify that so we just need to wait and do it at the right time for this latest treatment to have had time to take effect.
She is effectively handing me back to UCLH who will continue to manage my treatment going forward and make decisions as to what the further treatment will be. Typically lutetium treatment consists of six treatments and this was my 6th treatment. Although in some countries and institutions further treatments have been given but they may be held back until they are needed .
So now it’s a bit of a waiting game while we just let time pass, they will continue to do blood tests and monitor my PSA. I am due to have my next oncology outpatients appointment in about 6 weeks time and I guess by then we will have had another blood test and know where the PSA is at.
One piece of good news from today is that the Covid-19 test came back negative so I know that today I do not have Coronavirus which is nice to know.
So is this my last visit to the London Clinic in the short-term in that I will not be back here for at least a couple of months. I suspect I will be back for treatments 7 and 8 at somepoint.
That said I need to have a good chat with my consultant at UCLH and discuss what other possible treatments may be available.
Today I had my oncology outpatients appointment via a telephone call with the same doctor that I spoke to last month. The appointment was quick and efficient and to me it seems like a good way to do these more routine type of appointments and is something I hope they continue to do going forward.
The doctor was pleased with my PSA result as was I, 88 is a good number to be at and a good leap down from last month’s figure of 144.
We also discussed whether I was Borderline anaemic and he felt that there was nothing to worry about and that no treatment was needed as it was very borderline. I accept what he says but I will modify my diet to include more iron rich foods, I may also start to take iron supplements to give me that extra boost.
We then then went on to discuss whether I should have Zoledronic acid ( this is to strenthen my bones) at the start of July and he said I should go ahead with that appointment so that will be a trip to UCLH for that treatment. I will need to consider how I get there.
So with the appointment coming to an end and I was given the all clear to go ahead with the Lutetium treatment on Friday. I did ask a cheeky question as to whether the treatment was available on the NHS yet but the answer came back that it wasn’t yet available. So going forward I will need to continue with the London Clinic.
So being given the go ahead I am looking forward to my day trip to London and seeing a little more than just the view from the house and the garden, and of course it will be a little adventure 😁👍.
Well today as been full of excitement, well not really that exciting but exciting for me.
I have been out of the house today and visited the GP in Thorley for my three monthly Hormone Injection.
It was good to get out and see a small part of the world. It was also good to get behind the wheel of the car and do a bit of driving. They have resurfaced the main road through the village which we had seen from our house but hadn’t driven down, looks like they have done a good job and now all the potholes have gone.
I arrived at the Surgery with my mask and gloves on and like last time I needed to ring the doorbell to be let in.
I actually feel this system works much better as there was no waiting around and I was straight in to see the nurse. Although I guess less people are going to the surgery and that is why it is more efficient but I am sure there are lessons to be learnt!
The nurse was very good as well as quick and efficient, the injection is done with a big needle and I never felt a thing which is always a good result.
And before I knew it I was off home, I made the most of the drive and went through town to have a look around. The roads were quiet and driving was a pleasure but I can’t see that lasting!
Soon I was home and looking forward to my next adventure which is tomorrow when I go out for a blood test!
Well here I am again back at the London Clinic for treatment Number 5 of Lutetium which is of course the second attempt after the quality control issues of last time.
Like last time I’m I got a car into London to reduce the risk of picking up the virus on the train and the tube. And once again the journey only took about an hour as the roads were pretty clear although there did seem to be a larger volume of traffic on the roads.
I arrived at the clinic and visited the hand sanitation unit and then checked in. And then as a matter of priority I got myself a coffee.
Soon I was in my room had a cannula fitted and blood taken. I found out that the treatment was going to be early and things would be done at slightly quicker pace than normal to reduce my time at the hospital.
So come 11 o,clock I was being injected with the Lutetium and placed behind the radioactive screens. Where they normally keep me for a number of hours to review the radiation Decay they are going to let me go as soon as possible and so I should be leaving the clinic at about 1 p.m.
And I am pleased to say that everything went to plan and I was home by 2 pm.
As well as being socially isolated Barbara and I, and Teddy, need to stay 2 metres apart for the next 5 days so that they do not get exposed to the radiation. So it’s separate bedrooms and sitting at either end of the sofa.