Wednesday, 14 July 2021

On a scale of 1 to 5

 David was a 1. 

The scale was for the gasometer... Explanation: on Monday morning David went in early to have time to consult with one of the radiation therapists to get clarification from her about the gas, the bowel, the dietary requirements arising, so to speak.

It transpires that on Friday David was a 1 on the gasometer scale, so no worries. Apparently, if you score a 5 they get you off the table and send you out for a walk to assist. She said to David that people who came in from Waikanae tended to have more wind than people from closer suburbs - apparently it's to do with sitting still for over an hour whereas people from close by do not and the wind moves and dissipates with walking around. Note to the public: do not follow a person who steps out of the Radiation Clinic looking purposeful and walking briskly!

Today David saw Han Kim, the radiation oncologist, who told David he was not to change his diet - consistency is required and changes can upset the bowel.

So tonight we had a mild chickpea and vegetable curry - but this time, to be on the safe side, there was no cauliflower rice to accompany it!

Phew! It's a relief not to have to find non-windy vegetables! And it is great that David can continue with his vegan diet and have it be well-balanced and pleasurable for him again!

One bonus of Friday's misunderstanding was that I had found out that capsicums are non-windy. So yesterday I stuffed them with rice, tomato, sauteed shallot, lots of parsley, coriander leaf, a dash of balsamic vinegar and a dash of sweet chilli sauce; then baked them for about 40 -50 minutes. Apparently they are extremely yummy ...

Saturday, 10 July 2021

The gas man bloweth ...

Yesterday, as the Radiation Therapist checked David's pre-session scan, she mentioned that he had a lot of gas in his bowel. She didn't indicate why that was problematic, but David got the impression that it was.

She said to consult the pamphlets we were given about the treatment and what to do/eat etc - so last night we did, but they are not specific about why gas is not helpful. And you know us: the why is as important as the what to us boffins.  

As we continued to investigate (isn't the internet amazing?), we came across a reference to a low FODMAP diet being required for men with prostate cancer undergoing radiation. 

So then we had to look up FODMAP foods - don’t ask what it stands for as it’s words I do not understand and cannot pronounce. Essentially though it’s foods that create wind. They could, for ease of understanding, call it FARTFOODS ...

So that means that for the duration of his radiation treatment, David needs to avoid cashews (!!), chickpeas and coleslaw, cauliflower, broccoli and beans because they create gas in the bowel - as the gas moves it shifts the prostate bed, so the radiation targeting is not so accurate. Who knew? (The article uses words like intrafractional and interfractional but just go with 'it shifts the prostate bed' OK?)

And of course, on Wednesday and Thursday nights David had eaten big quantities of chickpea veg curry, cauliflower rice (about 1/2 a head of cauliflower each time …), coleslaw, beetroot and carrot salad. A veritable gale in his bowels … And he LOVES cauliflower rice, but until his treatment is over, no more cauliflower rice for David!

And his post treatment travel snack bag needs to exclude hummus. His nut snack box has had the cashews removed.
 
For the duration, David may have to have the occasional egg to supplement the nuts as his protein source, given the lack of legumes.
 
And no more falafel! I am going to take the hummus and falafel that I made yesterday to breakfast this morning and donate them to Bruce, Gary and David R. My David can hand them over in a short ceremony of farewell. At least he knows they will go to an appreciative home!

 

Friday, 9 July 2021

5 down, now 28 to go

One week has passed and we are getting into the swing of things with the amount of water drunk, the coordination of peeing and travel by public transport ... TMI, I know, but best you chaps are prepared.

Irene noted in the comments on the last post that she reckoned he would know the precise locations of all toilets on the journey - I think she is probably right!

 David is pleased to have two days off without having to spend 3 hours a day travelling! It's not the journeys - he spends most of the train trip each way watching downloaded episodes of Spooks - we have seen it before, but it is excellent so bears seeing again. I think it's the fact that the whole day is focused on the treatment, 

  • prepping for it in the morning 
    • one litre of water drunk before leaving home to ensure he is decently hydrated, 
    • bowel prep to make sure it's empty, 
    • food for the journey home [my job], 
    • peeing ..., 
    • getting him to the station [my job usually]) 
    • peeing, 
    • then the journey in with another pee stop at the station, 
  • at the hospital
    • peeing to completely empty the bladder,
    • then more drinking to make sure the bladder is full enough to hold the small intestine away from the path of the radiation
    • changing into the loose trousers they provide
    • the treatment (10 minutes all up)
    • peeing 
    • changing into clothes again
    • peeing
  • the return journey
    • bus to station
    • peeing at the station
    • train home
    • peeing at Waikanae Station
  • pick up from the station (my job)
  • drive to Bruce and Gary's
    • in the bath for 20 minutes 
    • drink tea with B&G (my job)
  • drive home (my job)
  • prepare food (my job)

So far the treatment has had no noticeable physical effects. I am watching carefully though.

So three times a week (rather than 5 - to make it more manageable), we drive down to Bruce and Gary's so he can have the deep warm bath with epsom salts and bicarbonate of soda added - I thought it was salt rather than bicarb, but David checked ...

We have purchased bulk amounts of both so that I am not buying small pots at higher prices with considerable waste of plastic packaging.

And now for something completely different:

Today was a bread baking day - 6 loaves went into the fridge to prove overnight last night. Usually I bake them early in the morning, but this morning I forgot! How I missed them being in the fridge this morning, I don't know - I did get the chickpeas out that I had soaked yesterday, and I blitzed them along with fresh coriander, parsley, cumin, ground coriander, cayenne pepper, 7 garlic cloves, tahini to make hummus for David to take with him, plus enough for several more days and  plenty for falafel.

But I forgot the bread!

So after I had taken David to the station and then gone for my walk with Ann (with her in Stoke and me in Waikanae and chatting away on the phone with headphones), I decided I would bake the bread. I didn't look at the time until I had the oven heated up - doh! I didn't have time to bake it as I was meeting Jane off the train and needed to leave pretty much straight away! What a dilbrain!

So the unbaked loaves got left on the bench to continue proving in the warm, the oven was turned off, and off I went. After lunch, I went home. There was time enough to form the falafel and place them on the baking tray and put them in the fridge to wait, but not enough baking time was available for bread or falafel before David's train was due in; so the loaves and the falafel waited - and they waited until we came back from the bathing process.

Now however there are 6 yummy looking loaves of bread and fewer falafel than I cooked because a certain lovely husband has consumed a few for his dinner along with a serving of coleslaw and a serving of beetroot and carrot salad.

Now doesn't that look scrumptious?

Falafel baked are healthier than deep fried obviously. We could buy an air fryer, but we wouldn't get enough use out of it and they are not cheap! I think he may have eaten 6, but that is fine - they are very good for him.

Tomorrow we will have breakfast out with the guys - David's first breakfast since Sunday! Yay!! We have someone coming to visit in the afternoon, so I will be making cheese scones - double Yay!!


Tuesday, 6 July 2021

2 down and 31 to go

 Today David had his second radiation session. And rather than my driving him in as I did yesterday, he went in by train and bus.

Some changes from yesterday were sorted today:

As he isn't eating in the morning prior to his treatment, his last meal is dinner the night before. Yesterday in the car, so he wouldn't starve before we got home, I took:
    • a small thermos of Thai pumpkin soup
    • carrot sticks
    • homemade hummus
    • 5 seed crackers
    • a banana
Today, because he had to carry it all, he didn't take the carrot sticks
    • the verdict this afternoon was that soup on the train is not do-able.
Tomorrow, the soup will be replaced with a container of mixed nuts. And the hummus, crackers, and banana will still be part of the care package. He can eat soup when he gets home.

We both noticed yesterday how lovely the staff are, and also how much chatting goes on between the patients who are waiting. It does increase the camaraderie and lower the sense of loneliness. 

All of the men were having radiation for prostate cancer and they all have had adjustments to make about how much water to drink to fill the bladder so that the small intestine lifts out of the way, but not too soon so they need to pee before the treatment. It is a finely judged and often misjudged art, I gather.

David drank too early yesterday, and then had to start again. Multiple pee stops required on the way home ...

Today however he judged it better and did not have to break the train journey for a pit stop as he had thought he may need to.

When I picked him up from the station, we went down to Bruce and Gary's so he could have a bath in a solution of salt and Epsom salts. We no longer have a bath at our place - we took it out when we changed the bathroom so we had a family ensuite. 

I can hear him yawning now - I think he will be early to bed tonight. One of the effects of drinking lots of water early in the day is the need to pee lots overnight too. Altogether now: Poor David!

I didn't drink lots of water, so why was I awake a lot last night then?

Thursday, 1 July 2021

It is now the beginning of July

 and we have been home from our hols since just before Easter - where has that time gone, and why haven't I blogged about it? About the last few weeks of the South Island sojourn and the time since we have been home, I mean.

Good question. And the only truthful answer is that I have been writing blogposts, or snippets thereof in my head but not committing them to the keyboard. And the reason for that is needing a lie down when I think about sorting and choosing and uploading the photos... How lazy is that, I ask? Answer: VERY!!

And of course, life has moved on since we were in the South Island and if I leave it any longer in doing a catch up, it'll be irrelevant, or it'll be so far out of date that it won't be worth my keeping on with blogging. And I am not yet ready to give that up.

So, a quick word snapshot of the remainder of our SI holiday, starting from our time in Wanaka:

  • we took a drive over the Crown Range to Arrowtown and stayed the night in a motel there, explored the old Chinese settlement which was very moving - a part of NZ history that the government officially apologised for a few years ago because of its racism and exclusion policies.
  • we had about 2 hours in Queenstown:
    • the good part was having falafel burgers at FergBurgers - yummy, and they have been recreated here at home since (I make falafels, and recreated the sauces that FergBurgers had; aioli, lemon yoghurt, chipotle chilli sauce ...  Look up their menu www.fergburger.com and do your own versions without having to go to Queenstown - much cheaper!)
    • the crap part was trying to find a park for longer than 15 minutes for the car. Even though there were only NZ tourists around, the place seemed jammed to us. Not so apparently, but not pleasant to be in. And it poured down with rain as we were leaving Fergburgers, so instead of going back to the car to get coats, we bailed and headed away and back over the Crown Range to Wanaka. Much relieved to leave ... Sad in a way, as our last trip to Queenstown was back in 1994 with my mum and my aunt Molly - and we all loved it. But now it is so much more built up and so much less attractive.
  • we took a cruise across to Stephenson Island in Lake Wanaka on a lovely sunny day. That was a really good thing to do. The lake is so much larger than it looks from the town and it is not long before the boat takes you away from many signs of habitation. And the views were wonderful from the summit on Stephenson Island. I will post photos later ...
  • The A&P show was on in Wanaka and we had been told it was well worth attending, so we did - interesting and huge. Nothing we wanted to buy except there was a display on water wheels that I was nostalgic about - my dad had planned to build a water wheel for us at our old house, making use of the overflow/header tank that collected the water off the roof and supplied the pressure to drive the water upwards on its path in the stormwater pipes out to the street. Dad never did build it, and I have kept it on his list of tasks for if he returns from the dead - that'll be a bit of a struggle as he was cremated...
    • the highlight of the A&P show for us was a jack russell race: a regular event that some dogs are trained for apparently. The winner was clearly a well trained dog - he had won it six times before. It was hilarious as the dogs ran all over the place, some were focused on the finish line but many just enjoyed being able to bound all over the race paddock.
  • I had managed to destroy the screen on my phone in Wanaka - by dropping it twice, once screen-down on to the roadway (static shock as I got out of the hire car made me drop the phone ...), and once on the cruise from the top deck of the boat to the bottom deck. The screen was munted and using the phone was an exercise in remembering where things were on the display, because the top half of it could not be seen at all - a lovely tartan pattern emerged... I did keep taking photos and surprisingly they were mostly okay, given I could really only point and shoot - with hope in my heart...
  • When we left Wanaka in the afternoon after attending the A&P show, we headed towards Haast and that trip is just chock full of wonderful vistas - lakes, ranges and hills, and it was an absolutely beautiful day. It was a day to feel extremely lucky to be living in New Zealand, and a day to feel privileged to be able to travel around and enjoy it. 
  • We stopped for the night at the Makarora Country Cafe, only about 55kms out of Wanaka, but we were sated with views and stopping to take photos and admire and saying goodbye to what is one of our most loved places to visit. The Country Cafe was a good stop off - a peaceful place, and a good place to be when the wind started that evening! I made dinner and then blobbed while David went for a walk down towards the lake. So the next morning we both did the walk - there is something about the peace and stillness of being in the valleys between the hills and ranges, and knowing that there is such a plethora of them - the landscape is truly awe-inspiring. 
  • On our way to Haast, we stopped at the Blue Pools and did the walk there - mostly downhill, which of course means the inevitable for the return. And I conquered a fear. Well, not quite conquered it, but I did keep it under control to a large extent. On the way to the Blue Pools there was a swing bridge and I hate them, fear them, have avoided them - and in NZ that is quite hard to do when out exploring! So this one I decided I would do. David asked other walkers to wait until I was off it, so I didn't have to cope with it moving more than necessary. Brave person, aren't I? Not really, I know, but it was a bit of an achievement for me. The last one I went on was at Hokitika Gorge back in 2016, and I really struggled. Anyway, the walk and the bridge crossings were well worth it - a beautiful blue pool at the end of the track and there were even a few hardy people swimming - I love it when people take on that kind of challenge because I can experience it vicariously. I did thank them for doing it on my behalf ...
  • We stopped overnight at Haast and went out for breakfast to a place Sandra of NB Are and Are had posted about - the Hard Antler. Good food, lovely people, interesting decor - a bit of a challenge to eat while being watched over by heads of deer and multiple sets of antlers!
  • We headed on up the West Coast and had our first stop not very far on at Ship Creek. What a fabulous place! In spite of the heavy rain, we did the walk through the kahikatea forest. And then we started the walk out to and along the dunes. Alas, the rain was too heavy out in the exposed dune area, so it was back to the motorhome to change - what absolute bliss to be able to change in a vehicle - standing up, and to be able to hang your clothes to drip in the shower. And to put on clean dry warm ones, and then make a cup of tea to warm up your insides. Imagine having to change by undressing in a car, writhing out of clothes, struggling to dry yourself, getting dry clothes on over a still damp and cold body. WE LOVE THE MOTORHOME!!
  • We intended to take a few days to get to Hokitika. However because the rain was pelting down in buckets and 40 gallon drums and monsoon buckets, and the road was looking like it would flood - and there are more than a few rivers between Haast and Hokitika and they are prone to flooding - we decided to head straight for Ross and come back down the West Coast and explore in better weather next year or later this year. So on we drove, stopping at Fox for lunch - in the motorhome: left-over soup, and home made bread - no need to go out and get wet...
  • At Ross we stayed at the very rumpty Empire Hotel in their very rumpty building site grounds and went in for dinner. The food was nothing special but the service and kindness was exemplary. They made a salad and raw veg platter for David which was very kind. 
  • The next day, after a peaceful night, once one of the guests managed to stop the alarm on their van from continuing to go off, we headed for Hokitika - yay!!
  • We stayed at the new Kiwi Holiday Park there - what a great place it is. I went in to the DOC offices with cheese scones and lemonade scones that I made in the camp kitchen - excellent facilities. We will definitely go there again. Fiona kindly came and collected me complete with the scone mountain, butter, jam and cream. It was lovely to see the team again - I do miss that place and those people.

OK, more later... And photos will follow, I promise - once David has sent off his insurance claim, I will set him the task of finding photos to be posted. So don't hold your breath!

Tuesday, 29 June 2021

More about David

 Still no desire for dusting has manifested itself, dammit!

However he has received his start date for radiation treatment and it is Monday 5 July. We are a mix of pleased, relieved and trepidatious**!

** The Shorter OED says there is no such word, but I don't care - I have invented it just now. Feel free to use it - there will be no copyright fee!

And the other milestone is that he is within a day or two of sending in his insurance claim for the expenses to do with the surgery for the anterior capsular phimosis in his right eye. It is just over 2 years since the surgery at the Birmingham Medical Eye Centre (BMEC). If you look in the archive of this blog there are posts about his eye adventures starting in late May 2019. 

Note to self: do not employ David in any role where adherence to deadlines is critical...

And a new word I learned yesterday is turbidity - I am doing a piece of work setting up a project regarding achieving compliance with legislation about new standards for water supplies in NZ. The Dept of Conservation water asset guys tell me that turbidity refers to the amount of silt in water and therefore its lack of transparency. Cloudy or opaque with suspended matter says the Shorter OED re turbid. It also means being confused, so I am going to use it in that context. I will have plenty of relevant opportunities, I think.

Don't you just love new words?

I had guessed turbidity had something to do with the movement of water - and I now realise why. I associated turbulent with turbidity. Not so silly after all. But still not correct, dammit!


Sunday, 20 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 ...