Oncology Outpatients 17 November 2021

Itโ€™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 donโ€™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.

Hospital Day 7

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 ๐Ÿ‘.

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.

From here it looked like a little alien!
And into the arm.

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.

The trip to the scanner involved a quick trip around the hospital on what looked like a lovely day.

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 ๐Ÿ“ 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.

The setting sun and Post Office Tower
And a few moments later!

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 ๐Ÿคž.

I was going to take a selfie but couldn’t find my comb!

Back in Hospital Again

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.

The view from my window, my wife took this when she visited.

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.

Many thanks to those that have messaged ๐Ÿ‘ โค

A rough day and chemo update 16 August 21

After feeling pretty good following on from my Outpatients Appointment I took a turn for the worse on Thursday evening. We had been out for dinner which was fun and I was feeling good but during the journey back to the hotel I started feeling rough, with the onset of what could best be described as flu like symptoms.

I had pain in my back, chest and thighs and a cracking headache was developing. This pain was all in or around areas where I know I have bone metastases or ‘mets’ and so could well be caused by the chemo having a go at the cancer cells there. I also felt very fatigued and just wanted to go to bed, which I did.

We were staying in a very nice hotel but it is always more comfortable to be at home and close to the things that you know. So when I awoke in the morning we took the decision to head home once I was feeling a bit better to travel and therein lay once of the challenges.

I needed some stronger meds which I had at home but didn’t feel well enough to travel home and so I contacted my GP to see if they could prescribe to a pharmacy local to where we were staying and they said they could.

Several phone calls followed and I think that really the doctor wanted me to be seen as I was in a bit of a state but I didn’t want to be seen locally and potentially end up in A&E away from home. If I was going to A&E I would sooner be closer to home.

But in the end I managed to convince them to send the prescription to a locally pharmacy and was soon taking some oral morphine which didn’t take long to kick in.

I have to say a big shout out to my sister and brother in law who we were on holiday with, they were amazing and went to the pharmacy and waited while the prescription was sorted and then helped us pack. My sister in law then drove our car home while I travelled in the back of theirs. So a big thank you to them.

I also heard great reviews for the local pharmacy in Southwold who went above and beyond in getting the prescription sorted and even phoned my GP to chase things up. And so a big thank you to Reydon Pharmacy.

So I was feeling a little better and before long we were heading home. To be honest I spent most of the day in a bit of a daze, dozing in the back of the car, getting home and dozing on the sofa, you get the idea.

Well the oral morphine was helping which was good as I was due to have my next chemo the following day.

We thought it a good idea that Barbara comes with me and while she wouldn’t be allowed to sit with while I was having chemo she would be at hand if I needed help before or after.

We also decided that getting the train in London and then a taxi to the hospital would be the best way to go.

And fortunately all went to plan and the chemo went as expected. I was feeling better and more able to go through the procedure and soon I was done and we were heading home.

Another cannula

I did manage to get my latest PSA reading which has risen to 396 so up from 352 on 21st July. Add that to the increased mets shown on the scan and it does not make for good reading, so really hoping these second and third rounds of chemo are going to do the job.

And so now a few days later as I write I am wondering what the next few weeks will throw at me, I had thought that I had got away with the first round of chemo as I didn’t get any side effects until until the 3rd week, so who knows what might happen this time around.

With the chemo treatments being every 3 weeks they soon come around and I am already counting down until the next one!

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.ย  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.ย  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.ย  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.ย  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.ย  But it would seem that UCLH prefer phone calls.

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

A Sad Farewell

Yesterday we said farewell to my mother in law, Sheila Prior, it was sad day and in many ways different due to the Corona Virus restrictions.

I am classified as Extremely Vulnerable and as such confined to the house, but we really wanted to be at the graveside to say our farewells.

So we arranged it so we could stay in the car during the service to reduce the risk of picking up the virus.

The team at the cemetery were very good and helped us get the car very close to the graveside and with a phone call we were connected to the service.

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The service was only attended by immediate members of the family due to the restrictions and even then people kept their distance.

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One of the things that was missed was the close contact that is needed as part of the grieving and consoling process, the ability to hug and comfort each other on these occasions.

Sheila’s granddaughter’s played key roles with one reading a poem and the other singer her favourite song, “Send In The Clowns”.ย  Both were poignant occasions.

ย  We were pleased that we were able to attend and say our farewells and later in the year we will have a memorial service which more people will be able to attend and be more of a celebration of her life.

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Update on Barbara

And so I thought I would provide a short update on Barbara’s progress, if you recall all she was recently diagnosed with lobular breast cancer and then she had a lumpectomy on the 26th of March.

The lumpectomy went well although it was a very long day and she was at the hospital at 7 in the morning and never got home until 11:30 at night.

As you can imagine she was very tired for a few days and in a lot of pain. There were two wounds one under her arm where they accessed the lymph nodes and one around her nipple where they accessed the lump in her breast.

They had also discovered that the tumour was larger than they had thought and that it was 32 mm in size, it was also deep in the in the breast and attached to muscle. That said the surgeon felt that he had removed the whole tumour and that none had been left behind.

She had a very large dressing on and so it was difficult to see the wounds but you could see the pain and discomfort she was in in.

She had a follow-up appointment on the 8th of April and went to see the consultant in Epping as she was still in pain where he prescribed stronger medication and advised her to rest up more. He did say say that he felt the wounds were healing nicely and it would just be a case of time and it could be as long as 6 weeks.

We are still waiting to hear whether she will need chemotherapy or radiotherapy or a mixture of the two and tissue samples have been sent to America for testing. Once the results are back we will know more more about what follow-up treatment is needed.

Overall she is getting better by the day day with with movement returning to her left hand side a little bit each day day. I also think that the pain is reducing but she needs to continue to take it easy.

I off course wish her all the best and all my love.

A sad day

Today is a sad day, we got the phone call this afternoon that Barbara’s mother had passed away in hospital, it’s an extremely emotional time for us and just adds on to all the other things we are going through.

As background information, she had dementia for a number of years and recently had been very poorly she spent her time mostly at home with some time been spent in a care home.

The care home had said that she either had to spend all her time at the care home or all her time I’m at home. It was decided that she would go full-time into the care home so there was less risk of her taking the virus into the home.

After a few days of being in the home I received a call from the care home saying that she had been admitted to hospital with a high fever, the paramedics have been called and they had decided to take her to hospital.

Within a few days we got another phone call saying that tests indicated that she had Corona Virus and that that she was approaching the end of her life.

On the 7th of April she finally succumbed to the virus and passed away. I can only hope but the she is now in a better place and at peace.

I think what this does is make the Corona Virus very real us and our family. No one was allowed to visit her in hospital and so we never got to say our goodbyes.

The funeral is planned for next week and I don’t think Barbara and I should go so we will have to find another way to say goodbye. As only 10 people can go to the funeral it is planned to hold a memorial service for her later in the year.

In the meantime we are thinking of her and remembering the good times.

Rest In Peace