Blood Test

Today I have been over to the GPs surgery for a blood test and I have to say that it went very well.

The doctor was very good and got into the vein first time and got the blood out and the vacutainers full. I was also quick to be seen, I barely had time to sit down.

This blood test is roughly at the 6 week point between my last appointment at UCLH where they are now seeing me every 3 months when I have my Zoledronic Acid treatment for my bones and the next one at the start of January.

Fingers crossed that the results will come back and show no major increase to my PSA and also nothing else to worry about.

Overall I feel fit and well and am getting around a lot better although I still use a walking stick when I go out walking.

I have tried to reduce the amount of morphine I take for the pain in my back, I now take 10mg in the morning and 5mg at night.  The are slow release tablets and cover me all day.  I did try stopping the nighttime dose but found it a little painful in bed and it interrupted my sleep so I have started to take them again.

I also take 10mg of Amitriptyline at night and wonder if I could get away with not taking this any longer. I think I will discuss it with my Oncologist in January in case there are side effects coming off it.

The Acupuncture that I had has been going well but I think it was more effective when I was having 3 sessions a week rather than one a month. So I am thinking of stopping them.

As I say I am feeling a lot better and what I really need to do is continue to build up my strength and endurance by walking more. I still need to be very careful with my back and in particular with bending and lifting as the vertebrae above and below T12, the one which partially collapsed and I had cement put in are both very vulnerable to collapse as well although I hope the Zoledronic Acid is helping to strengthen them 🤞.

X-Ray showing my damaged vertebrae.

So I am hoping the results for the blood test come back soon and show good news.

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 😀.

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 🤞😁.

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 😀.

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 🤞.

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.

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 💤💤!

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 😁👍.

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 😁👍.

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 fruit – such as dried apricots
  • wholegrains – such as brown rice
  • fortified breakfast cereals
  • soy bean flour
  • most dark-green leafy vegetables – such as watercress and curly kale

So I will be looking at some liver recipes, I have not had liver for years!  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.

A Right Palaver

So two simple things need to happen, I need my three monthly hormone injection and I need to have a blood test in time for my next Oncology Outpatients Appointment on the 3rd June.

It would make sense to have them both at same time and have them both done by the GP’s Surgery. After all I normally have my Hormone Injection done by them and I had recently had a blood test done at the surgery.

So last week I started making enquiries about getting this done.

First of all I had to convince them that this was the best plan!

Then they couldn’t access the nurses diaries as they only release appointments 2 weeks in advance.

The person I was speaking to said she would speak to the practice manager and get back to me.

And true to her word she called me back and said that the practice manager had said that I should be referred to the District Nurses who would come to my house and do both the Hormone Injection and the Blood Test.

What a result I thought, I was happy with this outcome.

A few days passed and then I got a call from one of the District Nurses who asked if I was housebound. I said I was as I was classed as Extremely Vulnerable. She asked if I was housebound prior to the virus and I said no.

She said then I wasn’t technically housebound and that they couldn’t visit and I would be referred back to the GP.

Great?

So I messaged the surgery who got back to me the next day, it was the same person that I had previously spoken too!

We discussed the problem and she tried to book me in. She managed to book me in for the hormone injection but couldn’t access the calendar for booking the blood test.

She would call me back!

And she did, to tell me there were no available slots for blood tests and so I would need to go to The Rivers Hospital and have a blood test done there!

The surgery would post me a blood test form to take with me.

I was straight on the phone to The Rivers and managed to get booked in.

So I now have my Hormone Injection on the 27th and the Blood Test on the 28th! One woth the GP and one at The Rivers!

What should have been fairly simple seemed to become very complicated. It’s a good job I am pretty robust and can work through these situations but I can see a lot of people finding this very stressful.

I feel more needs to be done to make these things simpler and less of a palaver!

Fingers crossed🤞

Oncology Outpatients 6 May

Today I had my monthly Oncology Outpatients Appointment which thankfully was done by phone call and saved me travelling to UCLH in London.

I had had my blood test done on the 29th of April and already new that my PSA had come down to 144 from the previous level of 169 and the high of 1,585.  And so I was happy that everything was moving in the right direction although it had slowed down.

The call was with a doctor I hadn’t previously seen or spoken to but he had been through my records and I had been discussed at the MDT (Multi Discipline Team) meeting on Monday.

We went through my PSA result and how I was feeling.

I was actually feeling pretty good, no side effects from the Lutetium that I was aware of, no cancer related problems that I was aware of and just back pain from my fracture last year.  I relayed all of this to him.

We then discussed treatment and agreed that my next Lutetium treatment should take place on or around the 5th of June but ultimately it would come down to the Radiation Oncologist to decide.

We agreed that my next outpatients appointment would be on the 3rd June just before the treatment and I am also due to have my 3 monthly hormone injection on the 1st of June and I needed to get that booked in, and if I can I should get a blood test the same time ready for the outpatients appointment.

So a few things to get organised!

Overall I feel that doing the outpatients appointments by phone call works well and something I would like to see continue once the Corona Virus restrictions are lifted.  It is nice to see the doctor and build a rapport with them and you can discuss more with them and so it would be good to see them at least every three months.  Of course if my health were to change I would want to be going to see them so they can better see and examine me.

Video calls would be better as well so we can see who we are talking to, the call Barbara had with her oncologist was a video call and worked well.  But it would seem that UCLH prefer phone calls.

What next?  I need to get my 3 monthly injection organised and the treatment on the 5th of June confirmed.

Blood Test 29 April

Blood test, gloves and mask, doctor, one way system, waiting now

Today I had a Blood Test and perhaps more importantly I had a little trip out. I am due to have my Oncology Outpatients appointment on the 6th of May and instead of going to UCLH in London it was said that I should have it done locally to reduce the need to travel and therefore the risk of exposure to Corona Virus.

So I contacted my GP a few days ago who had a whole bunch of questions and in the end asked me to get the team at UCLH to email or write to them. So I emailed the UCLH team who were very good and were quickly in contact with the GP.

Don’t get me started on the ‘one’ or ‘joined up’ NHS thing, although I might write a post about it in the future 😉

Anyway, back on topic, I got a call from a doctor on Tuesday at the GP surgery who arranged a blood test for me for today. It would seem that the Herts and Essex Hospital where I would normally go for a blood test was taking in Corona Virus patients and so the blood test would be done at the GPs surgery instead.

So come this morning I was faced with a serious dilemma! What was I going to wear?  After being confined to the house the dress code has been very casual and comfy and today I will have to wear socks!

Anyway I overcame this mental hurdle and got myself dressed, packed some rubber gloves and a face mask and I was off.  The roads were very quiet as you can imagine and so I got to the surgery in no time at all.

20200429_104136

After parking at the surgery I donned my face mask and gloves and went to the door of the surgery.  The door was locked but I could see a doorbell had been fitted to control access.  I rang the doorbell and the reception came and let me in after asking me a couple of questions.  The waiting room was empty and I went straight into see the doctor who was masked and gloved up as was the nurse who was assisting her.

After a brief chat where I discovered that the doctor had had to revisit her basic training as a young doctor on how to take blood given the crisis and that generally GP’s do not take blood.  Good thing I was not her first patient from whom she took blood, she was very good.  Straight in first time with no pain, result!

20200429_114058
Soon I had a plaster over my wound, I exited the surgery via the backdoor as they were running a one way system so that patience didn’t meet each other on arrival or leaving.

And then I was home again, I drove through the town which was very quiet and as such was a very pleasant drive.

20200429_104210

Fingers crossed now for a positive set of results.