Saturday 19 September 2020

David update

A couple of weeks ago David had his 3 month post operative PSA test, and on Thursday 10 Sept we went to the first follow up with the urologist.

The not very good news is that his PSA reading was 0.15 - that is about 3 times higher than it should be at this stage (i.e. less than 0.05 - basically undetectable), with no prostate gland in situ. It apparently is unlikely to be lingering in the blood this long after the operation. 

Instead the urologist says it is more likely to be micro metastatic foci, i.e. cancerous cells still in the body that will have escaped from the prostate, as the tumour was right at the boundary of the prostate and there were tumour cells on the outside wall. He says it is most likely now in the bone or a lymph gland. When I said to him 'but it’s quite slow growing isn’t it', he said (very seriously) 'mostly, but not always.' 

Bugger, bugger, bugger, bugger!!

Anyway what happens from here is:
  • another PSA test in a couple of weeks,
  • a phone call with him in the following week
  • regular tests - I think he will say 3 monthly, however David wants monthly
  • if the PSA gets up to between 0.2 and 0.5 David will have a PSMA PET scan to see where the cancer cells are located
  • the urologist suggests radiation treatment - spot welding he calls it, to minimise its severity when they can see where the cancer cells are.
    • if it has to happen, then David would reluctantly accept radiation treatment, but he doesn’t want it and nor do I for him because of its effects on the body.

However, we have a plan already in motion, but not as soon as it should have been, dammit!

David is now totally vegan - no dairy, eggs, meat, fish, bread. And mostly he is eating raw fruit and veg, not much cooking happening! 

We had given up meat a few months ago, but did not give up the dairy, eggs, fish, bread, and I am really extremely fucking angry with myself for being complacent - we believed the urologist when he said he would get it all out in surgery and that there would be no reason why there would be any ongoing issues, apart from likely loss of potency. And after the surgery he said it had all gone very well - so that led to more complacency on our part, dammit!

So David is now intensively following the diet recommended in the book Chris Beat Cancer - the food, not the christianity bit:
  • veg juicing with lots of carrots, a raw beetroot, a green apple, a lemon, lots of mint, lots of parsley, root ginger, turmeric root, broccoli, caulk, silverbeet, celery, …
  • big salads twice a day, with lots of green stuff: broccoli, cauliflower, cabbage, silverbeet, and any other salad veg and fresh herbs we have, plus a dressing of lemon juice, a little honey, wholegrain mustard and turmeric powder. 
  • nuts and seeds in the salads and separately
  • And his favourite beetroot and carrot salad is a staple every day.
  • and yesterday, he started off with a smoothie that will become a daily event with whatever fruit we have on hand:
    • coconut yoghurt, a banana, frozen berries (boysen- and blue-), 1/2 an orange, 1tsp wheatgrass powder, 1tsp turmeric.

Based on guidance from our friend Jaq Biggs who is a herbalist, I had recommended this to our dear friend Lesley when her ovarian cancer reared its head again as secondaries and she was unable to have chemo, told ‘no further treatment, just wait and see’. (Go home and wait to die was how she interpreted that!) So she was keen to try an alternative if the other alternative was go home and grow the cancer some more.

Lesley’s CA125 marker was 51 when she was diagnosed with the secondary cancer, 35 after a few weeks on the diet, and after 9 months it was down to 8. Considering that at the time of the first test at diagnosis of the secondary cancer, she had no ovaries and hadn’t had for about 5 years, that CA125 rate was very high. She has had 2 six monthly CT scans since and they can find no sign of the cancer that was there (shown on CT scan) when she was discharged from hospital.

So, if it worked for her, there is no reason it won’t work for David. He has to stick to it rigidly for 90 days and then he can ease off just a little bit. But not much easing. Because I need/want him around for a long time yet!

If you looked at him, you wouldn’t know there was an issue. He is surprisingly upbeat, and he is enjoying the food so far - he was a bit miffed that he couldn’t have cheese scones the other day, but sees his long term health as more important. 

And don’t worry - when you come to our place for meals, I do still cook, and I will still feed you as befits the reputation of Cafe Rata. However, it’s likely you will also get what you see as your week’s vegetable requirement met in one hit…

Call him if you like but not right now - he’s doing the vacuuming - and it’s important there are no other distractions: he can create those all by himself, and has done - it is over an hour since he said he was going to get on to it right now ;-)

8 comments:

Jennie said...

We are so sorry to hear that things are not going well for David. We both have everything crossed that the vegan diet does what it is supposed to do. I have to say I am intrigued by the carrot and beetroot salad as I love both of those ingredients. Take care both of you. I hope the vacuuming got done?! Jennie x

Lisa said...

Dear Both, Well Marilyn anyway, I know David never reads any of the blog. Our love and virtual support comes over the seas to you. Keep your Pecker up and keep taking the medicine.
We'll see you next year Covid permitting, we'll come find you, that is if you can find your own boat!!!

Much love
Lisa & David xx
NB WaL

Jenny said...

Oh, we are so sorry to read of David's health issues. I'm sure with your determination you are doing your very best to beat this into submission. Do give him a hug from us, and one for you as well. Thinking of you both.

Mrs. Jaqueline Biggs said...

Sending you both love and Biggs big hugs. xxx

Marilyn, nb Waka Huia said...

Dear Jennie and Chris, Lisa and David, Jenny and Robin, and Jaq,
Thank you all so much for your good wishes. David is really very well - but he has cancer cells lurking somewhere and there are not enough of them to be able to see them yet, dammit - dammit that they cannot be seen, not dammit that they are not numerous enough to be seen!

Jennie, the beetroot and carrot salad is super easy: peel and grate equal weights of carrot and beetroot (both raw), add a handful of sultanas or raisins, douse in balsamic vinegar. It keeps well in the fridge, Add crumbled feta cheese and toasted pumpkin seeds if you wish - but do it just before serving as they will go soggy.

We are looking forward to being back onboard Waka Huia, but are just not at all sure when that is going to occur!

Big hugs, Mxxoo

Anonymous said...

I had radiation treatment fifteen doses over three weeks for breast cancer after having lumpectomy. That was nearly five years ago and all seems fine so far! I am curious as to how you think it affects the body? They do it with pinpont acuracy now and it doesn't take long on each visit.
Anyway, I hope you will successfully find a way through this together. Stay strong, Ann and Keith xx

Marilyn, nb Waka Huia said...

Hi Ann and Keith,
The issue with radiation is that while they can target it with pinpoint accuracy to the exact spot that needs it, they cannot stop it going past that spot into the spine/other bones/other organs. And just as the radiation destroys cancer cells, it also destroys healthy cells.
So we would like to avoid David having to have it. If following a strict diet will make that possible, I will feed him cabbage and carrots constantly!
I am really delighted your treatment was successful - do they do a five year clearance check/sign off in the UK like they do here?
Mxxoo

Anonymous said...

Thank you Marilyn, yes I finish the Anastozole (anti-cancer pills)in February when five years are up.
Hope the new diet is successful and David doesn't explode with all that cabbage etc!
A&K xx