Oncology Outpatients and Zoledronic Acid

Back up to London today for my Oncology Outpatients appointment and for my Zoledronic Acid infusion.

Given I was on the 09.07 train from Stortford it was fairly quiet although the tube was busier.

The streets were quiet with arrows to mark the way!

I made it to the hospital in good time. On arrival I was asked to wear one of their masks which was different from when I was here on Monday.

I checked in and made my way to the first floor reception.

My name was soon called and I was pleased to see that my appointment would be with Dr Mark Linch, the main man, I hadn’t seen him for months ๐Ÿ˜€.

He asked how I was and I told him I was feeling well apart from my back although I also said I was feeling much better.

He looked up my PSA and told me it was down slightly to 85 from 90 and a high of 1,585 a year ago.

Overall he was pleased at how the Lutetium Treatment had gone. The PET Scan showed that tumours had reduced in size and activity which was great news.

He also said that he felt that the Immunotherapy treatment I had 18 months ago may have helped to prime my immune system to help out with the Lutetium. He also said that the immune system can develop memory and may continue to attack cancer cells now that they have been shown what to do.

I have been wondering about the effects of immunotherapy and how long it stays in the body and active. Is it a permanent change or does it fade over time? I don’t think they know yet?

So now I am to go onto what is called Active Surveillance and keep an eye on my PSA. I am go have a blood test in around 6 weeks and if it is stable I will have an Outpatients Appointment in January 2021. If there is a rise then I should let them know and I will have an appointment sooner.

I also raised the point that I seemed to bruise easily and that my skin seemed very fragile, he thought this may be down to the Dexamethasone and so reduce my dose down to 0.5mg from 1.00mg.

So once the appointment was over I headed upstairs for my Zoledronic Acid infusion. While there wasn’t a lot of people around I did wait a while before being called into the Treatment Room.

I was then fitted with a cannula, again it was a struggle to get it in and while the piercing of the skin is not too bad the wiggling around and trying to get it in the vein makes me wince.

My blood pressure was quiet good today the top image is before the infusion.

Again it took two attempts to get it in, both in my hand. They started with the bigger pink needle but then used the smaller blue needle the second time.

Finally fitted

Once the cannula was set up I then had another wait for the infusion and it was about 12.10 before the infusion was started. Its 15 minutes for the infusion and another 10 minutes for the flush.

The infusion was no trouble at all and soon the cannula was being removed without the same amount of fuss as going in!

It’s all about this little bag of liquid!

And then I was free to go and hopefully I will not be back at UCLH until next year ๐Ÿคž๐Ÿ˜.

I am really pleased with the news I had today and just need to think about what else I can do to help myself.

My back is getting better and I feel stronger so longer and more frequent walks. I need to be very mindful of my back as it is still very fragile so exercise that will not be a threat to that is a must.

I think I will also look at my diet again both in terms of health and cancer prevention but also with a view to losing weight.

So back on the train feeling happy and looking forward to the future.

Covid 19 Swab and Blood Test

Well I am off to London today, to UCLH for a Covid 19 test. It’s actually a bit of a pain as I need to go all the way to London just for a test before coming up on Wednesday for an Outpatients Appointment and Zoledronic Acid treatment.

It has been a while since I have been on a train so it will be a useful recce for Wednesday.

The train arriving at Bishops Stortford

I am also hoping to get a blood test today as they couldn’t get blood out last time. I have spent the morning drinking water and have had at least 2 pints on top of tea and coffee. I hope the extra fluids will make it a little easier to draw blood?

The train was quiet and so it was easy to maintain social distancing, the tube however is a little different and is slowly filling up. As you can expect there are still those who feel they don’t need to wear a mask or wear it correctly!

Soon I was walking down Tottenham Court Road, they were arrows on the ground to help with distancing but clearly they were invisible to some!

I arrived at the Macmillan Cancer Centre and was pleased to find out that the Covid Testing was being done where they do the blood tests ๐Ÿ˜€.

I checked in and took a ticket, I was number 8 and the counter was on 7, I had hardly say down when I was called in. It was to be a blood test first.

There were two plebotomists in the booth, one to take the blood and another to record my details.

Once more they struggled to get blood out despite all the extra fluids I had drunk. But she was very good and it was painless although watching her wiggle the needle around made me wince.

Second attempt was in my left hand where she struck blood and soon it was flowing, albeit slowly.

Blood taken I was moved into another booth for the Covid Swab, I was pleased someone was going to do the swabbing, it’s better than doing it yourself.

And then I was done, I must have only been in the hospital for 10 minutes or so. I bet it won’t be so slick on Wednesday!

And then it was time for my journey home. Around 2 hours of travel time for 10 minutes in the hospital!

Just need to wait for the results and the all clear which I should get tomorrow ๐Ÿคž.

Bowel Cancer Test

I received a letter a few weeks ago telling me that as I was now over 60 ๐Ÿ˜ฒ, that I was eligible for Bowel Cancer Screening and that a kit would follow in the post.

And true to their words a screening kit arrived in the post. I opened and read the instructions which is basically a case of using a small scoop to scoop up some poo ๐Ÿ’ฉ and then put it back in the bottle and then put it back in the post.

The Bowel Cancer Test Kit

Simple!

The hard part is making sure that the poo does not go in the toilet bowl water. So when the time came I put some loo roll down the toilet sat down and carefully positioned myself.

And I am sure you can work out the rest and don’t need any pictures ๐Ÿ˜‰.

Soon I was scooping up some poo and carefully putting it into the little bottle. This done I completed the immediate job at hand and then later in the day popped the sample into the post in it’s return package.

I believe I will get the results in a couple of weeks. I do wonder if it will pick up on my existing cancer although I believe the test looks for blood in the poo and if found further testing is done.

So now it us all waiting game while I wait for the results.

Fingers crossed ๐Ÿคž.

Flu Injection 28th September 2020

I normally get a flu injection but have had to organise it myself but this year has been different due to Covid and to my mind it has actually been better.

I received a letter a few weeks ago with the appointment time on it and scheduled it into my diary. Then a few days ago I got a text reminding me of the appointment.

The appointment was to be at Bishops Stortford Football Club and not at the GP Surgery.

The football club is only a few minutes drive away and so I arrived about 5 minutes before my allocated time.

I was met by a man who gave me some simple instructions to follow and soon I was parked up and someone came to my car and told me where to go.

I headed into the building and was guided to a desk where my details were checked and then into a short queue for the injection.

I didn’t wait long before I was sat down, my name was checked again and the injection painlessly administered.

And then I was on my way out and back home.

Overall I have found this to be very well organised and very quick and simple.

Well done to all those involved for making it so easy.

PET Scan 14 Aug 2020

Well it’s an adventure today, I am off to UCLH for a PET Scan and I have decided to go by train and tube. The PET Scan is a follow up on the Lutetium treatment I have been having and will take a look inside to see how things are. My PSA has been stable at around 90 and the scan will help decide what I do in regards to treatment.

Of course my big dilemma was what to wear and take, it was cooler than it has been and wet. In the end I opted for shorts and a light fleece and a waterproof which should cover all options. Then I needed masks, gloves, etc.

I left a little early as I hadn’t been on the train for a while and I knew that there was building work going on at the station. I was pleasantly surprised that I got parked very easily and used my Blue Badge to get a disabled parking space close to the station entrance. That said the car park was not busy so I guess not many people are using the train.

At the train station

The train was not that busy so I found a seat and settled down for the first part of my journey.

The train to Tottenham Hale was quick and smooth. 

On arrival at Tottenham Hale things had changed a little as there was also building work going on there.  But my transition onto the tube was also quick and easy.

Tottenham Hale was not that busy as you can see.

Going down

The tube train itself was a little busier and would fill up as we go into the city.  The tube was very hot so shorts were a good choice.

I arrived at the hospital early with the view that I would get a blood test before my scan.  I  made my way to the first floor and found where the blood tests were done. I normally have blood tests done in the Macmillan Cancer Centre but would try the main building .

I took a ticket and waited .

No luck and I had to give up and head to Nuclear Medicine for my scan.  If I can I will try for a blood test after the scan.

I arrived at Nuclear Medicine at the right time and filled in the questionnaire.

It was not long before I was taken to a prep room and fitted with a cannula. Sounds simple but it took three attempts to get it in, the actual penetration of the needle is not too bad, it’s the wiggling it around to get the needle into the vein that gets me!

Once the cannula was fitted I was then injected with the radioactive element that would be attracted to the cancer and then show up on the scan, showing the tumours and there size, in the past they had reduced in size.

Third time lucky getting the cannula in!
The radioactive injection comes in a heavy lead box.

I had then to wait an hour for the radiation to circulate around my body before the scan.

The lights in my room are lowered so there is only one thing to do…  zzzz.

The hour passed quite quickly and I was soon in the scanning room.  I had difficulty lying flat on the bed which hard but managed to get into a position I could hold.

Once more I closed my eyes and slowly I moved through the scanner.  Fortunately this was nice and quiet, not like a MRI.

A radiation sensor in the hall shows the background radiation and the lower shows it when I put my hand over it.

Then it was time to get dressed and go.

I decided not to go for a blood test after all I don’t know when my next outpatients appointment is yet and so will try and get a blood test closer to that date so it is more relevant .

The journey home was quick and easy.

All I need to do now is wait for the results of the scan.

Acupuncture

Today I am off on a mini adventure!

It’s an adventure in two ways, firstly because it’s a trip out and secondly becsuse Acupuncture is something new to me. So looking forward to the drive to Harlow and to the experience of Acupuncture.

The reason for going is that I am still experiencing back pain from my fracture last year that gets worse as each day progresses i.e. I start not too bad but by the end of the day I am in pain, and I had been speaking to a neighbour who had had success with Acupuncture for easing her back pain.

And so I had been in contact with the Acupuncture Therapist and she thought she could help and so the appointment was made.

The drive to Harlow is only about 20 minutes and it was good to be behind the wheel and to see what was going on in the big wide world. The M11 was fairly quiet so I was surprised at how busy Harlow was, where was everyone going?

Anyway before long we arrived at the business park where the therapist is based and as part of the avoidance strategy she had suggested that I use the Fire Escape to enter the building to avoid bumping into anyone.ย  This I did, although it felt like I was sneaking into the building for some more nefarious purpose!

The therapist was waiting at the top of the stairs, we said our hello’s and she showed me to her consulting room which was close to the fire exit so it made sense to enter the building this way. I was masked up and wearing gloves as was she.

We had done a video call on Friday which covered all the questions she needed to ask and so it was straight down to the acupuncture. I stripped off my t-shirt and was asked to lie facedown on the consulting bed.

I made myself comfortable and she was quick to start sticking the acupuncture needles in me. She placed needles in my back, my ankles, my wrists and two in my head. I never felt a thing apart from the touch of her hands as she positioned the needles. She used a total of 18 needles.

Six needles in my back.
Three in each ankle.
Two in my head, I hope you can see them.

And remaining 4 were in my wrists.

And now there was nothing else to do apart from lie there and trying to relax. I was still wearing a facemask and so my face felt really hot but apart from that I closed my eyes and enjoyed the time of enforced relaxation.

One other thing happened and that was she cut my ear to let it bleed a little, she said this would help with controlling my body temperature and so help with the hot flushes that I experience.

One observation she made was that my back looked quite red, she asked if I had had the heated seat on in the car which I hadn’t. The picture below shows the redness around my lower spine. I can only assume that this is caused by the Lutetium treatment I have had or the Vertebroplasty procedure, perhaps it’s some kind of bruising. You may also be able to see a reddish square in the middle of my back, I think this is where I have had radiotherapy in the past, although that is nearly a year ago now do surprised it is still there.

The blue square shows the faint red outline of the radiotherapy square, you do need to look carefully!

Then soon it was time for the needles to come out and once more I never felt a thing.

A quick chat about my bowels followed and a warning that I might feel tired and I was ready to go. I booked another appointment for the following Saturday and I was off. I felt relaxed and at ease, my back felt less tense and only time would tell if the acupuncture has brought any benefits.

The therapist is also a herbalist and so I will be talking to her about that and where it might be able to help. She thought that it would help with my bowels which are a bit mixed up due to the steroids that I am on and she thought it a more natural approach than taking the Movicol which I take every evening.

Well it’s a few hours later and we are back home, just taken Teddy for another walk. The back certainly feels less tense and I felt less pain (or is it all in my mind?). I was puffing a bit by the end of the walk and was stooped slightly but I am so out of practice, more walks needed!

I am Iron Man!

Am I referring to that classic Black Sabbath song or a modern film? Well neither, I am talking about a man trying to increase the iron levels in his body and blood stream and move away from that Anaemic level that I was given after my last blood test.

So what am I doing?

I have a two pronged approach, the first being to take Iron supplements and boost my Iron levels in that way and the second and more interesting is through diet.

So today I dusted off the nutri bullet and made myself a smoothie, nice and simple, just orange juice and spinach. The orange juice gives it a nice flavour as well as the vitamins that come in orange juice while the Spinach brings in the Iron as well as even more vitamins.

I am also trying to eat more Iron rich food and so this evening I had some liver for dinner, in fact it was Liver and Bacon with Onions, Tomato and Apple served in Onion Gravy and I have to say that it was very very tasty.

20200606_191703

I had slightly over catered and will be having leftovers for lunch.

Below is a list of the different blood measurements that I am looking to improve by changing the diet. They are all just below the recommended range, which are the figures shown in brackets.ย  I will of course need to wait for my next blood test to compare them and in the meantime I will continue to try and eat more iron rich food.

Haemoglobin concentration 117 g/L [130.0 – 180.0]

Red blood cell count 4.11 10*12/L [4.5 – 5.5]

PCV 0.367 /L [0.4 – 0.51]

Lymphocyte count 0.8 10*9/L [1.0 – 4.8]

Lutetium Treatment No 6 and a Swab up my nose!

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.

My room showing the screens to protect staff from radiation.

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.

Coffee and a Pain au Raisin

I got to my room and settled in and soon the nurses turned up to do my observations, my blood pressure, temperature and weight.

Two different blood pressure results, it amazes me how it can change so quickly.

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.

The nurse did a good job of getting the cannula in my arm.
Breakfast

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 Covid Swabs ready to be sent off.

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 ๐Ÿ’ค๐Ÿ’ค!

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.

Oncology Outpatients 3 June

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 ๐Ÿ˜๐Ÿ‘.

Great News – PSA 88

One of the good things that has happened recently is a number of Apps and ways to access your GP and NHS data have been introduced so you do not need to wait for the doctor to access information like blood test results.

And so I used one of my new Apps to look at my blood test results from the test I had last week and was very pleased to see that my PSA had dropped to 88, I have made it back into double figures ๐Ÿ˜๐Ÿ‘.

It’s actually quite a big drop, down from 144 last month and clearly a massive drop from 1,585 where it was last year.

On the downside the blood test also showed that I am borderline Anaemic which means a lack of Iron in my blood and other things which I still need to find out about.

While I wait to find out if either the GP or my Oncologist will prescribe Iron tablets and of course identify the underlying cause of the Iron deficiency, I can add more Iron rich food into my diet such as the following.

  • liver
  • meat
  • beans
  • nuts
  • dried fruitย โ€“ such as dried apricots
  • wholegrainsย โ€“ such as brown rice
  • fortified breakfast cereals
  • soy bean flour
  • most dark-green leafy vegetablesย โ€“ such as watercress and curly kale

So I will be looking at some liver recipes, I have not had liver for years!ย  Liver and Bacon sounds good.

Pig's liver with streaky bacon | Tesco Real Food

And I’ll be getting the blender out and making those lovely green drinks with curly kale and spinach!

But such good news about my PSA, I feel it sets me up for my Outpatients call tomorrow and Lutetium treatment number 6 on Friday.