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 11 August 2021

Back at UCLH today for my Outpatients appointment prior to having Chemotherapy on Friday. I am also going to have a blood test and a Covid Swab Test.

A very different journey today as we are away in Southwold. So about an hours drive to Ipswich train station followed but a 1.15 hour train ride into London and them 10 minutes on the tube.

But totally worth it as being on holiday gives me do many benefits and even the train journey was nice and relaxing.

I arrived at the hospital in good order and was soon called forward to the second waiting area and straight in to have my observations done.

My blood pressure was a little high and even after taking it three times I wasn’t able to bring it down by much.

I guess it could be high because of the travel to the hospital although I feel quite relaxed or it could be because I was poorly the other day?

And then before I knew it I was in with the doctor who did a review of how I had been. I told him about the side effects I suffered and he said this was fairly common and I should expect more!

He also went over the results of the PSMA PET Scan that I had on Friday. Which basically showed that more mets had developed since my last scan in May.

The next scan will be in around 8 weeks so let’s hope the chemo has an effect by then and has reduced them down a little 🤞.

If the chemo is not effective after 3 treatments then they will stop it as there would be no point in having the chemo. So fingers crossed 🤞.

After the appointment I then headed downstairs and had my covid Swab and blood test done. All quick and efficient.

Now I just need to wait for the result of the covid test before chemo on Friday, it should be clear as I am showing no symptoms.

Side effects – 9 August

Well what a day and it didn’t start well!

I awoke to a splitting headache, fatigue and tiredness, aching jaw and muscles. It was so bad I couldn’t get out of bed and infact I never got up until 1 pm in the afternoon and I was still feeling pretty rough.

And so I can only put this down to side effects from the Carboplatin Chemotherapy that I had on the 23rd of July. I was a little surprised to be getting side effects like this so long after treatment.

And even now as I write two days later I still don’t feel 100% and am still taking paracetamol and brufen to keep things under control.

And so now I wonder what this means for future treatments and I am due the next one in 2 days ?

The other thing about the 9th was that was the day we were heading to Southwold in Suffolk for a week’s break and so I was gutted to be feeling so under the weather.

Eventually I pulled myself together and felt well enough for the drive and so we headed off to Southwold.

And it must be true what they say about ‘sea air’ as we went for a walk along the beach and I felt a lot better. That sea air was a real tonic.

So we are making the most of our time on the coast although I will need to go to London twice, once for my Outpatients Appointment and then for treatment.

So watch this space 😉

It was overcast when we arrived.
Watching Teddy having fun on the beach always makes me smile

Chemo Update 4th August 21

Just a quick update on how the chemo has gone so far.

So far it has gone really well and apart from feeling a little tired for a few days following on from treatment I have been feeling fine and showing no signs of any real side effects.

My sleep has been a little disrupted and I think this is down to the extra steroids I was taking for a couple of days following the treatment.  I was going to sleep and sleeping for a few hours and then waking up and not being able to get back to sleep. 

And once again things are getting back to normal again.

Time soon passes on these three-week treatment cycles and I am back at the hospital for a PSMA PET Scan on Friday and then the following week back there on two occasions for my outpatients appointment and then treatment.

So far so good.

Teddy and I out on one of our walks.