Neurologist Appointment & Scan

Today is a two hospital day, first stop is the National Hospital for Neurology and Neurosurgery to see a consultant about my back and then I am off just down the road to The London Clinic for my post treatment scan for the Lutetium treatment I had on Tuesday.

So after a train ride and a taxi I arrived at my first destination and checked in. I didn’t have to wait long and I was told to go and get an X-Ray done.

So back outside and down the road to another entrance where I sort out directions to the X-Ray department which like in a lot of hospitals was downstairs.

On arrival I wait a few minutes and was then asked to change into a hospital robe which I did.

The X-Ray was to be of my whole spine and so I would be standing for the X-Ray. After some careful positioning I was given the thumbs up and the room emptied and the machine whirled. First picture done I was then turned sideways and another image was taken.

Then it was a quick case of getting dressed again and I made my way back to the waiting room.

Two minutes later I was called and met my the consultant’s CNS (Clinical Nurse Specialist). She would be carrying out the consultation.

She started by asking lots of questions about how I was, what had happened and so on.  She showed me the X-Ray of my spine, please see picture below with the circle around the damaged (Wedge Shaped) T12 vertebrae.

Spine Close Up

I must say that it was a little scary seeing how compressed the vertebrae was and while she said it would reform it’s shape a little and that the disc’s above and below would grow to fill in the gap it still causes me great concern.  As does the fact that the vertebrae above and below are at high risk of a similar type on fracture.  I need to be very careful.

The CNS gave me an examination and a check over.

She went on to say that the approach to healing was time and rest and that I would need to wear the spinal brace for at least 3 months.  There was no surgery that could be done and to some extent I am relieved that surgery is not on the agenda.

I will just have to be patient.

After the consultation was finished I made my way over the Devonshire Place and the London Clinic for my Lutetium Post Treatment Scan.  I am getting to be an old hat at this now and knew exactly where to go.

I didn’t have to wait long to be called in.  Getting on the scanner bed was a slow process due to the pain in my back but it was nothing like getting off after 30 minutes of lying on my back.  I needed help from the staff and I asked them to move me slowly.

On my way out I bumped into my Consultant who said she had seen the blood test and was pleased with the results.  She was going to review the image from the scan.

She later text me and said that the scan image was even better than last time and that some trouble spots shown previously have disappeared completely.  Together with the fall in PSA she felt this was really encouraging.

This is of course excellent news and the best Christmas present I could get and really this is only after 2 treatments and hopefully treatments 3 and 4 will help even more.

Merry Christmas Everyone.

Lutetium Treatment 3

Back home after a long day at the hospital, well The London Clinic to be precise.

The day started early and we had chosen to get a taxi to the hospital as I couldn’t face the train journey in rush hour with the brace on although with the power of hindsight it may have been the better option as the taxi took nearly two hours to get to the hospital with all the rush hour traffic.

So eventually we arrived and checked in, we grabbed a quick coffee before we were shown to my room.

And then as usual nurses and other people started to arrive to do blood tests, fit the cannula, and so on.  For me the main thing was getting my breakfast order in as I knew they were not the quickest and by now I was feeling peckish!

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At about 11 am my Radiation Oncologist arrived and she asked me how I was and so we chatted for about 15 minutes as we caught up on my back and other things since the last time I had seen her.  She then asked the duty doctor to give me a quick check over.

The duty doctor listened to my chest and breathing and then gave me a quick check-over.

All good, or so I thought.

My Radiation Oncologist returned and said that I had an irregular heart beat but we would still go ahead with treatment!

Well if my heart wasn’t beating fast before it was now!

A nurse appeared with an ECG machine and I was hooked up up to it and a paper print out spewed forth from the machine.  My Radiation Oncologist looked at it and said all looked good, there was a minor irregularity but nothing to be concerned about and she would add it to my notes.

By now I was hooked up to the drip and a saline solution was slowly dripping into me.

And then the physicist arrived carrying a small white box and while it was small you could tell by the way he handle it that it was heavy.  It was heavy as it was lead lined to protect everyone from what was inside. And what was inside was my small syringe of Lutetium 177.

The photograph below shows a picture of the drip with a white cylinder attached to it, this is partially filled with saline solution and then the Lutetium is added to the saline.  The cylinder is then topped up with saline.

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Once everything is ready then I was switched over to the second drip with the Lutetium and it started to flow down the tube and into my veins.  The actual infusion of the Lutetium doesn’t take long at all.

For those that like a little detail I received radionuclide therapy and the isotope was Lutetium 177 with an activity of 7400 MBq.  The measured exposure rate was 14 microSieverts per hour at 1 metre.  The effective half-life of the isotope with in the patient is 3 days.

While I think I understand all of the previous paragraph I will do a little reading up on this so I fully understand what has been written.

And then it was all over.

It was barely midday and the treatment part of the day was over, now it was time to let the treatment settle into my body and make sure there were no immediate side effects.  It was also time to let the radiation decay a little so I could join the general population and make my way home.  I was told I would be able to leave around 3.30.

To me that meant nap time!

Nap time included a number of interruptions as different people checked I was OK, and an interruption that I didn’t mind which was lunch which consisted of an Irish Stew that I had chosen early.  Because of the radiation all of my food and drinks is served in disposable containers and with disposable cutlery as regular crockery and cutlery would become radioactive over time.

So while the Irish Stew didn’t look too tasty served in a plastic container it was actually very nice.

The day ended on a little high-note as a copy of the results from the blood test I had in the morning were given to me.  And the good news was that my PSA was now 485 down from 655 a week earlier.

So to me this looks like very good news and is a good indication that the Lutetium was working.  My Radiation Oncologist had said that I will have a PET scan after treatment 4 and then do a full review of where we are in terms of my cancer and what needs to be done next.  We may roll straight into treatments 5 & 6 or delay them a little.

My own inclination at this time is to complete the course of 6 treatments so that the cancer gets a really good dose of Lutetium/treatment and gets beaten into submission.  I must ask if a further couple of treatments could be done in the future if the PSA starts to rise again and the cancer begins to become active again.

I left the hospital on a high-note with my new PSA of 485 and we made our way home.

We were given a set of rules to follow for the next few days while my radioactivity is high and these are mostly to protect my wife from radiation, these include things like not sleeping in the same bed for 3 days and avoiding prolonged close contact with other people for 3 days.  Close contact with babies and pregnant women was to be avoided for 7 days.

It had been a long day by the time we got home and I was ready for a rest!

 

 

 

It’s Brace Day!

I wonder how many of my post start with ‘here I am on the train again’ or similar? I need to get more creative with my writing but it is where I start a lot of my posts as I travel into London which of course is where I am right now, on the train!

And while I am heading to Warren Street I have a different hospital as my destination as I going to the Royal National Orthopaedic Hospital on Bolsover Street just round the corner from Warren Street and of course UCLH.

I am looking forward to getting the brace as I hope it is going to help a lot in terms of healing and also preventing further injury or damage.

Just a five minute walk or hobble and I was at the Royal National Orthopaedic Hospital which is a nice looking building.

I made my way downstairs to the Orthotics Department, checked in and before I knew it Donna was out to meet me.

We went into a consultation room and I got my first sight of the brace.

I didn’t get my first choice of a Camouflage pattern but got my second choice of Carbon Fibre.

Donna showed me how to fit the brace and some words of wisdom. I need to get used to wearing the brace but ideally should wear it as much as I can.

I put the brace on and pulled the straps tight and could feel myself straightening up which was good.

Not so good was all the softer bits around my tummy and waist (where I had put on weight over the last few months) squeezed outwards! Not a great look but one I can work on 👍😉.

And then I was off, the whole thing only took a few minutes and so I made my way to UCLH where I would get a blood test done.

The blood test is a little early, it’s for my appointment on the 18th, next Wednesday, but as I am getting Lutetium treatment on the Tuesday I thought I would get the blood done today.

As I made my way over to UCLH I found myself a little short of breath, I think this is due to the brace compressing my chest slightly and not allowing as much movement. I guess this is something else to get used to!

Anyway I made it to UCLH and got the blood test done, it was fairly quick and easy.

Then it was time for a quick lunch and then to make my way home.

And so this post ends as it started, back on the train only this time homeward bound.

I am getting used to the brace and at the moment it is quite comfortable. So far so good, let’s see what the next few days brings?

Three Years On

I can’t believe it has been over three years since I was first diagnosed with Advanced Prostate Cancer, it has been a fairly tough time with lots of up’s and down’s. I think the main thing that has kept me going is a positive attitude and the support of my wife and family and to them I say a big thank you.

The diagnosis I was initially given was.

  • Carcinoma of the Prostate T3b N1 M1 PSA 226 Gleason 9

Since then my PSA has been as low as 1.6 and as high as 1585.

In summary here is a list of the main cancer treatments I have been through. Alongside these there have been a number of other treatments to treat the side effects of the main treatment, Steroids for example.  Side effects have been tough at times and diverse, from minor to visits to A&E.

  • Hormone Therapy – Prostap Ongoing
  • Chemotherapy – Docetaxel
  • Radiotherapy – On Spine and Shoulder 3 times
  • Enzalutimide
  • Immunotherapy – Nivolumab and Ipilimumab
  • Chemotherapy – Cabazitaxel
  • Dexamethasone
  • Lutetium 177 – Current Treatment

Below is a list of the different scans and tests I have had over the past 3 years. For the blood tests I have written 42 at least, this is how many blood tests I have had at UCLH, on top of this I have had loads at PAH and with the GP, I would estimate that this figure is closer to 70 blood tests.

I believe to rest to be more accurate.

  • Blood Test 42 at least
  • Bone Scan 10
  • CT Scan 7
  • MRI 1
  • Ultrasound 1
  • Radiotherapy 12/3
  • Prostap Injection 10
  • PET Scan 1

And of course on top of this there have been the regular outpatients appointments and other trips to the hospital.  At times I have been to the hospital everyday for a week and at other times just a monthly visit.

Perhaps the worst trip was when I was hospitalised earlier this year with concerns around spinal cord compression.

I am really appreciative of the hospital staff and the service and support they provide, there have been hiccups but for the most part the service has been excellent and I feel lucky to be able to have this kind of service.

I am hopeful that the Lutetium is working as it should and I look forward to the future.

Spinal Brace Fitting

Today I am at the Orthotics Department of the Royal National Orthopaedic Hospital which is in Stanmore, North London. I am here to be fitted for a spinal brace, so a new experience for me. I drove to the hospital as it was quicker and I think easier than trying to go by train. Not a bad drive really.

I arrived and got parked and then made my way to the Orthotics Department which is in s fairly old building.

As I checked in at the reception Donna, who would be fitting me for the brace said hello and soon I was in the fitting room.

Donna explained what would happen.

I was to be covered in a body size length of tubigrip (or shoulderless dress as she called it) and then covered in plaster of paris around my chest and abdomen so that a plastic cast could be made.

Soon I was down to my boxer shorts and the tubigrip was pulled over me, I must have looked a sight!

Then Donna applied the plaster which was thankfully warm and strangely comforting!

I was stood up and had to keep my posture upright for a few minutes while the plaster set.

Before long Donna had her scissors out and cut the mould off me.

The whole process did not take long at all.

I was also allowed to select a pattern for the cast and opted for Camouflage as my first choice, fingers crossed.

I did learn that I would need to wear the brace for 3 months and to wear it all day unless I was lying down.

I imagine it will take some getting used to but it will help with the healing process and help prevent further damage. She did say that the disks above and below my damaged disk (T12) were susceptible to damage and that the brace would help protect them.

I also learnt that Donna fitted spinal braces for quite a lot of cancer patients who were reffered from UCLH. It would seem that spinal problems occurred quite a bit with cancer either with different types of cancer like Prostate and Myloma or by the different treatments causing problems with bones.

The drive home was good and now all I have to do is wait until Wednesday when I pick up the brace and start wearing it!

Back Home

Well I survived the trip to Bratislava and am back home again now and getting back into routine. I am really glad we went ahead with the trip and the challenges it presented as it was a real morale booster and to some extent a touch of normality.

Back home now and feeling a little frustrated that things are moving so slowly around my back, the focus seems to be on getting the back brace and I believe who is going to fund it.  In the end I think the Oncology Department have funded it and I had a phone call this morning saying that I should expect a phone call from the company that makes the braces so I can go in for a fitting.

Overall I feel my back is on the mend although it might be the pain medication that is keeping the pain under control and as such giving me a slightly false impression.  Whatever I need to take care not to aggravate the current injury or create another.

I do wonder what would have happened if I had just gone into my local A&E department?

I am also keen to see someone for the Neurosurgery team and get more info about my back, questions like.

Will it heel?

Are other bones/vertebrae at risk?

Can I take anything to reduce re-occurrence?

Can I do anything to reduce re-occurrence?

But let’s get the brace and take it from there.

I do have a date for my next Lutetium treatment and that is now on the 17th of December, so not long.   I am also due more hormone therapy before then and I need to get that scheduled in.

So I continue to take it easy, walking is still painful after a short distance and standing still can be even worse.  I also have to be careful lifting things and not over stretching.

Part of normality for me is getting to walk Teddy, something we both enjoy.  Currently I am only doing short walks with him and some friends take him out a couple of times a week for a longer walk which works quite well but I would love to be going along as well.  Here he is in his new winter coat.

 

 

Hello From Bratislava

Having a great time in Bratislava, it is our third day here and so I thought I would provide a quick update.

Firstly on the medical side.

I did quite a lot of walking on the first two days, going over 10,000 steps on both days and for the most part I was able to manage the pain so that it did not stop me doing what I wanted to do.

The previous Sunday I did less than 1,000 steps so you can see the difference.

We also stopped quite a lot so I could rest.

Also on the first day we did a bus tour which took the pressure off and is a great way to get a feel for a new place.

I did feel it today though so have probably over done it a little. I was struggling a little first thing but some additional paracetamol and oromorph helped.

But we took it as a sign and so adjusted the day so there was less walking.

And what about Bratislava?

Well worth a visit and in many ways exceeded expectations. We were lucky with the weather which was cold but dry.

There is lots to see and do in Bratislava depending on what you like. We like sightseeing and loved the old town, the castle and Soviet Memorial.

The food has also been amazing and has been far better than expected.

I am so pleased that we came away, it has been so worthwhile.

I think for a lot of people with cancer it is about trying to live as much of a normal life as possible and for me that normal life involves travel.

It is high risk to travel and I do a risk assessment before every trip and a big part of that is looking internally at how I feel both physically and mentally.

Physically my back is a problem and I don’t want to make it worse so we packed light and begrudgingly I let Barbara do most of the heavy lifting of bags on and off the airplane. So very much a team effort and I am thankful for her help and support.

Of course it is good for both of us to be away together and to get real quality time with each other.

Mentally I was ready for the break away and am still very much on top of things in my head. My attitude is more about how we can do these trips and how we can do it safely.

So we are looking forward to our next trip abroad which will be to Slovenia at New Year. We have learnt some lessons from this trip and they will make the next one a little easier.