Saturday 19 June 2021

A David update

 I have avoided blogging lately - as you will have seen, it is ages since I posted about our being in Wanaka - and we were there back in March and I didn't post about it until late April or early May ... And lots has happened since then.

I haven't written about David's post operative prostate status much in the last few months, but he has been having monthly PSA tests and after a couple of months early on where the reading went down microscopically, it has since then risen microscopically but steadily.

His first test after his operation was 0.15 when it should have been about 0.03 or 0.05. So it was between 3 and 5 times higher than it should have been.

Since then it went up once and then down a couple of months in a row. But in the last 5 or 6 months it has risen to 0.33 - so it has more than doubled since his first test. While that seems very low to men who still have their prostates in situ, for someone whose prostate has been removed, such a reading is a sign that there is residual cancer.

So I think it was back in November that David had a PSMA PET scan, when the reading had hit 0.20 - the trigger for further investigation. And once it had reached 0.29 in May, we decided it was time to act. So we had another appointment with the radiation oncologist, Han Kim, and a further PSMA PET scan was scheduled for 10 days later. They can only be done on Thursdays because that is the only day that the radioactive isotopes are available... I am not sure if they are imported or what, but Thursday is the day!

Han told us that the avidity of the lymph node that had shown up on the first scan had not increased in size or brightness on the second scan, which was very good news. However he recommended that David go ahead with both hormone suppression therapy and with radiation. His rationale was that once the PSA gets up to 0.5 in a man without a prostate, it is very hard to reverse the spread of cancer to other organs - the bones especially.

So David is now in Week 3 (nearly 4) of the ADT (Androgen Deprivation [??] Therapy). For the first two weeks he was on tablets with one drug, and in the second week he started a monthly injection of another drug. That is administered with a large needle as it is an ampoule that sits under the skin of the belly and the drug is absorbed into the body over the month.

The worst of the possible side effects was likely to be a sense of lowered mood similar to menopause. Another was hot flushes. AAARRRGGGHHH!!! The latter hasn't occurred, and the former is not manifesting itself either. We had discussed that David needs to be open with me about if he is feeling low so we can take care of that - magnesium, B vitamins or CBD oil if required.

I have regularly been checking if he feels the urge to do dusting yet - that would be a possible sign of feminisation. But alas, no dusting mania has yet manifested itself ... 😜😜😈😈 However I live in hope!

On Wednesday last week, we went to Wellington Hospital for his assessment interview to prepare for the radiation treatment. He now sports three tattoos - I had mistakenly thought they were for aiming the radiation and was distressed to see there was one on each hip and one below his navel. Doh!! No, they are for the radiation therapists to line him up with the right spots on the table below the radiation treatment zapper. 

He had to drink a litre of clear fluid before we got there, then pee and then drink 500ml so his bladder was suitably distended to lift the small intestine out of the way. However he needed at least another 200ml before he felt any pressure in his bladder. So he was getting a bit stressed that he would miss his assessment time - not so. They just waited. We now know that 700ml does it for him!

Radiation treatment is likely to commence in a three weeks or so, and will be Mon to Fri for 6.5 weeks, i.e. 33 sessions.

David plans to catch the train and bus in and out of town each day apart from Wednesdays when I will take him in because that is the day he will see Han each week for a check on progress. And I would like to be there for that.

It is likely he will get very tired towards the end of the treatments, so I may end up driving him in each day, but we will see.

We also stopped in to look at a hotel across the road from the hospital - if push comes to shove, he can stay over on the odd night if he feels too tired to come home.

I am going to find out what things he needs to do/eat/modify to lessen the impact of the radiation on his system, and we will put those in place. He will continue with the vegan diet and the juice which both Han and the urologist said will have been helping to keep the cancer cells from growing rampantly.

We didn't want David to have to have radiation, but faced with the choice of the cancer spreading or being demolished at this early stage, demolition seemed the most sensible option. Of course, we know radiation comes with its own risks, but they will hopefully not manifest themselves until some years down the track. Whereas a PSA rate that doubled within 9 months is too risky to leave to its own devices.

In terms of his state of mind - he is in really good shape. Almost always upbeat and stoic, if those two things go together. He's had a couple of times where he has said he feels a bit low, but each time it has been situational rather than hormonal. I do check each time if he feels the urge to dust yet, and he always laughs delightedly.

And by the way, I am probably doing enough stressing for both of us ...




6 comments:

Anonymous said...

I was wondering what was happening, it's good that there is the appropriate treatment available.
I found I was quite tired during my radiotherapy, but there was much travelling involved to and fro everyday from the boat.
It's good to have a suportive partner during these stressful times, for which I was very grateful.
Good luck to you bothe and I hope all goes well for you.
Ann Makemson xx

Marilyn, nb Waka Huia said...

Thanks, Ann. David's trip into Wellington Hospital will be about 1.5 hours each way - 1 hour on the train and a 15 minute bus ride, plus any waiting time. He is planning on downloading lots of episodes of Spooks and other shows to watch as he travels. Fortunately we are at the end of the train line so if he falls asleep, he will be woken to disembark ...
I'll be dropping him off and picking him up, so will make sure he doesn't head back into the city by accident!
We are very hopeful that the treatment will be successful, but it is all a bit scary!
Big hugs to you both, Mxx

Jenny said...

Hi Marilyn, thanks for taking the time to write an update about David, scary times indeed, but cancer specialists are wonderful, from one who knows. Yes, I believe the materials for the pep scan come in from Australia, we have a friend who is currently going through the same thing. David will definitely get tired and fatigued from radiation as the weeks go by, you may want to reconsider the train and bus routine a little later. Thinking of you both.
Jenny and Robin

Marilyn, nb Waka Huia said...

Hi Jenny,

Thank you for your comment.
I have already thought that I may end up ferrying David in and out of town - and I will be more than happy to do so. If the weather is nice, we could even go in the motorhome and stay overnight at Evan's Bay perhaps - a wee hospital holiday ...

Now it is just waiting for the start of the 6.5 weeks - well, to be more accurate, it6's waiting to be told when that start date is! And as you know, patience is not my stronest trait!

Hugs to you both, Mxx

Mrs. Jaqueline Biggs said...

Oh Marilyn, I have just read this post. I am sitting here with tears coursing down my face. Les had identical tattoos to David's. I am so sad that you both are going through this. I will email you in more detail re: your question you emailed me.

Love and Gigantic big Biggs hugs,
Jaq xxx

Marilyn, nb Waka Huia said...

Thanks, Jaq, I have read your email and I've replied already!
Honestly, it is all good here - David is in good shape emotionally and that really helps. And he is eating so healthily it is amazing. I saw a photo of him from a couple of years ago when we were at Alvechurch - he has lost weight since then and is looking so much healthier. Giving up meat and dairy has been excellent for both of us, I reckon.
Mxxoo