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Update on my Health
It has now been three months since I began chemotherapy for the treatment of Myeloma and so far the medication has had a positive effect on the disease.
Each week I have a series of blood tests to monitor the effect the chemo is having and ensure my vunerability to infections are not too compromised but every month they do a special test to check how many blood cells of the different types are being produced.
Myeloma produces too many white blood cells which gum up the kidney works and the purpose of the chemo is to get the ratio of the different cells in the correct proportion.
The danger is that it is the white blood cells that fight off infections so if too many cells are destroyed you might succomb to some other disease.
Dr Marie Hughs reviewed my progress which she regarded as better than the average response to the medication after three months.
The free light chains are both reduced and the Kappa cell count is back to normal.
The K/L ratio is now 0.32 and you may remember that the K/L ratio expectation for normal kidney function was between 0.26 and 1.65 which should make Gavin Kidney doctor pleased as he doubted I would get back to normal.
The free light chain is only one of the abnormal cells that they monitor and there is still evidence of what they call para proteins in the blood which they need to get rid of. If they can, then a complete absense would mean remission after treatment concludes is likely to be longer than if some para proteins remain in the blood. In other words, statistically, my life expectancy would be increased.
The other good news is that Marie anticipates that chemo should be completed by Christmas and I can then use the next few months to get myself walking fit again prior to returning to the UK, however, I may be left with some bone pain as she showed me that the xray's did show some spinal bone deformation which is never going to change. I discussed my plans for the Macmillan charity walk and her advice was to 'go for it'.
The photo above is of me in a Waikato Chiefs jersey which may be in danger of being banished. It all began with the Washington Redskins in the USA being pressured to change their logo of an ethnic American Indian (with a red skin). This was followed by the RFU reviewing the singing of 'Swing Low' by English rugby fans and now Exeter Chiefs are of course reviewing their logo.
When the Exeter Chiefs play it is a delight to see fans in full Indian head dress. When the drums start their 4 beat rythm and the war chant begins you can almost see the players react to the support with an increase in determination to score a try. Exeter are renowned for statistically scoring once they get over the 5 metre line. If you stop that support it will be to the detriment of English rugby and IMHO is completely harmless as is singing Swing Low.
If I were an American Indian I would be proud that a rugby team were emulating the bravado and culture of my forefathers to inspire their team.
The Waikato Chiefs have not said yet if they will review their name and I suppose they have more important things on their mind having lost their last 7 games but I anticipate wokery will raise it's ugly head eventually. The Crusaders reviewed their name after the Christchurch massacre and decided to keep it so they are still racing round the field on their horses before every home game to the delight of the crowd. I hope Kiwi's generally are made of stronger stuff to resist this PC pressure which has never been a popular pastime here.
Oscar the Cat
Now that Sox the Cat has gone to a new home, Kelly's cat Oscar feels safe to come round with her when she visits. As you can see from the above photo's he makes himself at home on my computer chair and even on my bed!
Exeter Chiefs Rugby have now completed the review of their marketing and will drop their silly mascot, thats all. The Exeter Chiefs name, logo and all the rest will stay as before. Another blow for the PC brigade and let's hope Waikato Chiefs come to the same conclusion.
More Bad News
One of Sue's best friends, Anna Hossack, who is living in France has emailed me with the news that her husband Tim Barnsley has had a massive stroke and is not expected to recover. Tim took the dog for a walk and failed to return home. Anna eventually found him in a field and he is now on a life support machine which they will turn off in the next few days.
We have known Anna from when we first went to live in Edinburgh and we were guests at her marraige to Tim, all of which has been reported on this web site. Both of them have often featured in our lives and Tim's dry wit will be sorely missed. Tim was a Francophile who found peace and contentment in the South of France.
Drugs for chronic pain
I have a continuous pain in my left hip. Nothing can be seen on a recent xray but bone pain is a known side effect of the chemo I am having for Myeloma. Before chemo started the pain was intense but it is now bearable and just a constant niggle which increases with standing or walking any distance.
I was taking the prescribed maximim doses of 4000mg of paracetamol and 60mg of codeine every 24 hours and a couple of weeks ago I cut this dose in half with no discernable change in pain levels. A few days ago I stopped the pain killers altogether and once again with no discernable change in effect.
I took this action after reading a report from the National Institute of Health and Care Excellence (NICE) who said "Commonly used treatments for chronic pain can do more harm than good and should not be used"
NICE went on to say "..people with a type of chronic pain called chronic primary pain should be offered supervised group exercise programmes, some types of psychological therapy, or acupuncture" and went on to say that "paracetamol, non-steroidal anti-inflammatory drugs (these include aspirin and ibuprofen), benzodiazepines or opioids should not be offered".
As long ago as 2016 Dr Andrew Moore who is an Honorary Senior Research Fellow at the University of Oxford warned that "paracetamol use is associated with increased rates of death, heart attack, stomach bleeding and kidney failure" and questioned wether it should be prescribed for long term pain. Interesting that considering I have impaired kidney function as a result of Myeloma.
I gave up taking Statins against the advice of the GP because I have a very low cholesterol count and did not like the side effects. I have now given up paracetemol and codeine as they do not seem to have any effect on my pain levels in fact it might be my imagination (psychological?) but the pain seems to have eased slightly. If the pain is a side effect of the chemo I will find out once treatment concludes.
New Zealand Referenda
Kiwi's and permanent residents like myself will vote in a general election on the 19th September this year. We will also vote on two referendums, to legalise the recreational use of cannabis and to legalise euthanasia for those with a terminal illness.
Details of what we will be voting for are contained on this page and clicking on this link will expand the page to reveal the details.
New Zealand Covid latest
After 102 days free of any new infections everyone here thought we had the problem licked until four South Pacific Islanders in South Auckland tested positive for the virus with no apparent connection with anyone from ourside NZ meaning is was an infection from within the commununity.
Jacinda's reaction was to lockdown the whole of Auckland at alert level three from Noon today (12th August) for three days which means stay at home except for visits for food and medicines, all bars and restaurants closed and the weekends Super Rugby games cancelled. She also imposed alert level two on the rest of the country which means we must observe social distancing and that means back to long queues at the supermarket.
On Friday evening Jacinda announced that she was extending the current restrictions for a further 12 days but that the cases so far confirmed were all linked to the same cluster in Auckland so ther was no thought of increasing the alert level at that stage. A further review would be carried out in a weeks time.
I think that the governments actions have been broadly accepted by the majority of the population. The strategy was well explained and measured in response to the outbreak.
The general election has now been postponed from 19th September until 17th October. All the opposition parties wanted a postponement so there can be no complaint about the decision from Jacinda. It does raise legitimate democratic deficiency questions though when Trump is criticised for wanting to delay the US elections but Jacinda is lauded for doing it. We do have postal voting here which is easy to do but it suited all parties to delay the vote.
The English premiership resumed after the covid virus lockdown. Here in NZ we get all the games live on SKY TV here and I watched the first one between Quins and Sale at the Stoop. Empty stands, taped crowd noise and lack of game time made for a high penalty rate which saw Sale ship three penalty goals in the first half. They were a bit better after the break, scoring a try to put them back in the game but had to be content with a 16-10 losing bonus point for their efforts.
In NZ the Super Rugby sell out big game at Eden Park between the Blues and the Crusaders was cancelled but the Highlanders v Hurricanes game went ahead in Dunedin in an empty stadium which finished 38-21 to the home side.
New Zealand Covid
At the time of writing the Auckland cluster of covid cases is still ongoing although most of the contacts have been traced and quarantined. Kiwi's await the cabinet decision on whether to extend or increase the alert levels on Monday 24th August with bated breath.
I think it is finally beginning to dawn on people that the current government strategy can not continue for much longer, otherwise the NZ economy will collapse. Should the government decide to extend the current alert levels I suspect it would not have popular support.
Despite its low population density (15 persons per sq km) and remoteness, the current outbreak has shown, if nothing else, that NZ is not immune to further outbreaks and never can be unless we remain cut off from the rest of the world for ever. Even if a vaccine becomes available there will still be outbreaks around the world so that it is just one more virus we will eventually have to live with.
On Wednesday 24th August Jacinda announced that all the present Auckland alert level 3 restrictions would continue until midnight on Saturday after which time Auckland will revert to level 2 and the rest of NZ will stay at level 2. Face masks will become mandatory on public transport throughout NZ. Those restrictions will be again reviewed on September 6th.
The PC brigade are at it again. This time it's the BBC Promenade Concerts and specifically the enjoyable patriotic last night when Sir Henry Wood's bust is polished, flags are waved, rituals are performed, Rule Britannia, Jerusalem and Land of Hope and Glory are sung. It was never taken really seriously but very much tongue in cheek and a good laugh. I remember Welsh baritone Bryn Terfel once coming to the stage with a rugby ball and toy dragon wearing a Welsh rugby jersey, even singing some verses in Welsh.
As if waving EU flags and wearing those silly blue beret's by the Woke contingent of promenaders was not bad enough, now they think the songs are 'crudely jingoistic' and as for singing that 'Britons never, never, never, will be slaves' the very mention of the word 'slaves' is sacrilege. I expect they used to join in the singing enthusiastically before they became wokified!
The concert will not have an audience due to the covid restrictions and musicians and choir numbers will be severely reduced. One BBC columnist thinks now is a good time to consign this 'toe-curling embarrassing anachronistic farrago of nationalistic songs' to the dustbin of history. Never mind that a huge international audience loves the event.
|Quotes 'wot I like:|
"The BBC is now without either hope or glory.
Sir Michael Ferguson 1957 - .
Politics should be kept out of such celebrations IMHO and traditions that go back over 100 years and more are unlikely ever to conform to modern day puritanical political correctness.
The BBC has now decided to perform the music but not the lyrics of Rule Britannia and Land of Hope and Glory and says it will revert to the traditional singing next year. It would appear that the guest conductor, a Finnish lady called Dalia Stasevska, who is a supporter of Black Lives Matter, is reported to have influenced the decision to prevent a British cultural tradition being performed although she denies she was involved in the final decision and realises the importance of the tradition.
Boris and his merry men are of course spitting blood and this can only be another nail in the coffin of the eventual demise of the BBC as an independent broadcaster. It is also likely to upset license payers who will be asking how the BBC can afford to support six symphony orchestras for a minority interest group when it claims to be short of funds and wants more cash from the government.
My Myeloma progress 27th August
Since my last update I have begun a daily walk of almost exactly a mile which I take at a leisurely pace and complete in about half an hour but it does include a very steep hill on which I live. The pain is always there in my hips and lower back but the intensity varies, possibly according to where in the chemo cycle I am on the day.
I applied for a course of physio which is specifically designed for cancer rehabilitation. An organization here in NZ called the Pinc & Steel Trust subsidises the treatment and it was recommended by my cancer nurse as something that might be beneficial. It turns out that it was the Cancer Society who subsidises the physio fee here in the Bay of Planty who are woefully short of funds at the moment as much fund raising activity has been stopped due the the coronavirus restrictions. I could fund the treatment myself but at $100 a session I think I will wait until my chemo is finished to see if the bone pain is still there afterwards.
This week is one of those where special blood tests are done to measure my progress in overcoming myeloma and once again I have made good progress. The various blood tests show that my kidneys are continuing to withstand the barrage of drugs that I am taking for the cancer that hinder the proper functioning of the kidneys.
To recap; when I was first diagnosed with myeloma the Kappa cell count was 14 and the Lambda 11166. This was progressively reduced once I began chemo and last month was 7.9 and 23.4 with a K/L ratio of 0.34. This month the Kappa cells are 7.7 and Lambda 12.3 resulting in a K/L ratio of 0.63. A normal K/L ratio is considered to be between 0.26 and 1.62.
Progress too on the paraprotein levels in my blood. Last month they were 4g/L and this month they are down to 1.8g/L. The objective is to get them down to zero.
The Doc told me that I could expect to be treated with different drugs on my return to the UK. Drugs she would like to use after chemo is finished are not funded here in NZ. The latest prognosis is 5 to 7 years.
So I am half way through the chemo cycle now which, providing my body stands the strain, will be completed just before Christmas.
English Premiership Rugby
To include all the games in the 1919/1290 season Premiership are including midweek games but with the following rules in place to protect players welfare:
“No player will play more than 180 minutes if selected in a matchday 23 on three occasions in a week No player will start all three games in a week No player will be selected in more than six matches in the seven games staged between 14 August and 13 September A player's training load will be managed if they are selected in three matchday squads in any given seven-day period”
All players and coaching staff involved are tested for covid before each round of games and if positive are isolated. There have been a number of positive tests each week but in the latest two tests only one person has tested positive.
“Harlequins confirm a total of up to 3,500 tickets will be made available to Harlequins supporters for the Gallagher Premiership clash with Bath Rugby at The Stoop, on Saturday, 5th September, kick-off 2pm.”
It ain't like nuffink like the mighty Quins usual numbers who fill the Stoop but they are not selling any tickets to Barf supporters for, they say, safety reason of travel. What a load of rubbish but we will silence those Quins supporters with a magnificent display of rugby magic!
Fund raising in memory of Sue 4 different ways:
On my return to the UK I will be organising a sponsored walk to raise funds for the Macmillan charity along the Macmillan Way West. I am also a cancer victim and undergoing treatment in New Zealand but in the meantime, depending on your location, you can donate with this widget below directly to the Macmillan charity by subscribing to the JustGiving web site:
All money donated will go directly to the Macmillan charity. The donation pages on JustGiving default to Pounds Sterling currency. You can change the currency but there are limited options. If your currency is not listed, here is another widget below to convert to whatever is your home currency:
To Donate without subscribing to JustGiving:
As an alternative to using the JustGiving widget you can click on the photo below and you will be taken directly to my JustGiving page where you also donate without needing to subscribe to JustGiving. You can also chose not to make an additional donation to JustGiving should you wish.
Text your donation
This is a quick and easy way to give either a one-off or regular monthly donation for those with UK mobiles.
Donations are taken out of the phone bill at source.
Text MOBILE to +44 70550 to make a £5 single donation
Text REGULAR to +44 70550 to make an ongoing donation of £5 a month.
Please obtain bill payer's permission. Age 16+. UK mobiles only. One off donations charged at £5 + std rate. Monthly subscription donations charged at £5 + std rate each month. Macmillan Cancer Support is a registered charity in England & Wales 261017, Scotland SC039907, and Isle of Man 604. Macmillan receive 100% of all donations.
I will be placing the above invitation to donate at the bottom each new page of this web site until the sponsored walk has been completed. My own cancer treatment is unlikely to be finished before the Spring of next year (2021) so the summer of 2022 is the most likely time for the sponsored walk to take place. If you would like to be included in the walk and receive email updates you can register your interest here.
Donating with a UK credit card
You can click on this link to donate directly to Macmillan if you have a UK credit card. If you choose to donate directly to Macmillan in this way it is linked to my JustGiving page so your donation will be credited to the total in memory of Sue.
Donating from overseas
If none of the alternative methods of donating are suitable then you can make a direct bank transfer by emailing Macmillan at firstname.lastname@example.org or calling them on +44 207 191 2172 and they can provide you with their bank details to make a bank transfer directly to their account.
Click here to go to the the next page.