A couple of weeks ago I had my first appointment with Alison. She is a lovely lady and we hit it off straight away, swapping tales of CND experiences of our youth; my one Aldermaston march (cheating by just doing the Trafalgar Square beano) and her chaining herself to fences and getting arrested at Greenham. The last arrest resulted in an epiphany of sorts and complete change of direction towards learning about acupuncture. Doesn’t life take us on strange courses? She knew a distinct protocol for stimulating salivary glands but took great care to treat the rest of me too. The session lasted half an hour after taking a comprehensive history, and the needles didn’t hurt at all. By the time we had finished my nose started to run and by the time I got to the car I had a mouthful of saliva…..lots of saliva. I had to keep swallowing it! This lasted for two hours. I am overjoyed that we might just have something to build on. Personal circumstances have forced a slight delay so my treatment continues after the New Year
Honey is good for you, miles better than sugar. Naturally produced, raw unheated, unrefined honey with the pollen unfiltered has vitamins, enzymes, antioxidants aplenty. Most honey is significantly antibacterial.Some people swear by it to help them with seasonal allergies. It tastes good. Take your pick from any of that
I’d like to mention Manuka Honey as it seems popular with cancer sufferers
Manuka is honey produced from a particular little bush that grows in New Zealand (and Australia….but that is a whole different story)
For years it was despised by beekeepers as it was difficult to extract and tasted absolutely horrid. Beekeepers avoided putting their bees anywhere near where the weed grew naturally. Then somebody discovered that it had antibacterial properties, especially as a salve or wound dressing, and the rest is history.
It has become ridiculously expensive and on the back of the boom, hive thefts, vandalism and poisonings have become standard fare, with countless beekeepers victims of one or more serious crimes. Verbal threats and physical beatings have also been reported and there are unconfirmed reports that beekeepers now travel in packs for protection to work remote hives.
This is an article from 2016. The situation has undoubtedly worsened since then.
The smaller concerns and hobbyists position honey hives, hidden in nooks and crannies, close to the plants so that they can market their honey as “manuka” and sell it for triple the price of standard clover honey, even if the active manuka content is so low as to be negligible.
A disturbing fact has come to light that every year there is more Manuka sold just in Europe, (never mind the rest of the world especially China which buys more than any other country), than is produced in the whole of New Zealand in one year.
The darker side of this is that much Manuka is counterfeit.
New Zealand produces about 1,700 tons of manuka honey in a season, the UK consumes 1,800 yet 10,000 tons are sold annually world-wide. It’s scary, I know, but do the maths on that and 4 out of 5 jars of Manuka honey are not the real thing.
I have a friend who spotted a jar of “Manuka” for £3.00!!!!!!!
New Zealand has developed a grading system called the “Unique Manuka Factor” (UMF). The higher the UMF the more Manuka in your jar……supposedly. Honey is adulterated with sugar, corn syrup or rice syrup and as fast as tests are developed to spot this the counterfeiters develop ways round them.
Now there is a way round this….and here I am mighty mighty biased because I keep bees.
Buy raw honey produced by your local beekeeper because this honey will beat Manuka hands down every time. It’s pure, unadulterated, has similar if not better antibacterial properties and tastes bloody good!
The use of traditional medicine to treat infection has been practiced since the origin of mankind, and honey produced by Apis mellifera, the honey bee, is one of the oldest traditional medicines considered to be important in the treatment of several human ailments. Currently, many researchers have reported the antibacterial activity of honey and found that natural unheated honey has some broad-spectrum antibacterial activity. In most ancient cultures honey has been used for both nutritional and medical purposes
Raw honey contains copious amounts of compounds such as flavonoids and other polyphenols which may function as antioxidants.
These lovely little facts apply to a lot of “artisan” produced honey.
I keep six hives in the middle of rural West Wales. I take only what the bees have spare.
It’s a crop free area. All we grow are hedgerows, trees and fields full of flowers, sheep and cows; not a pesticide in sight. I know exactly what’s in my honey depending what time of year I take it off the bees. In the spring the honey is dark and mellow. The bees have fed on fruit trees, Sycamore, Dandelions that pepper the surrounding pastures and the Hawthorn that dots the uncut hedgerows like marshmallows. They often don’t have much spring gold to spare and sometimes none at all. In summer the honey is pale and delicately scented and comes from Clover and Bramble. It all tastes gorgeous.
If you say you don’t like honey I’ll send anybody a little jar of the proper stuff free to prove you wrong.
Yesterday was my 10month anniversary, or to be more precise 43 weeks and 3 days since my last radio session. While my general fitness marches on I am still working hard on the saliva front. I can manage most foods, needing a drink with only the driest but I am getting quite frustrated with my taste buds. Nothing tastes the way it used to and while I keep trying all the things I used to like I am frequently disappointed. I can tell you that spending a while in the kitchen creating a dish, enjoying the tempting aroma and paying attention to presentation then popping a succulent morsel into my mouth only to taste sawdust is bloody bloody annoying. My throat stays a bit scratchy and dry. I remember my oncologist telling me he was “going to really fry” the back of my throat. Errrrr…. I can imagine better ways of telling me but he was spot on! The mucous membranes are wrecked and my uvula and its important salivary glands is a distant memory, a stump. I have absurdly developed a real sweet tooth because perversely I can taste the very sweet foods that pose ruin to my teeth! What torture! On a happier note there seems to be more saliva. I can get through the night without glugging copious mouthfuls of water. One xylimelt sees me right through to the morning. I have been going out shopping with just a pocketful of chewing gum and leaving the bottle of water behind at home which is somewhat of a milestone. I was wedded to those water bottles for so long, in fact I have one “lucky” plastic bottle that has been with me on all my appointments………..It’s got to last five years! 🙂
These things are my daily standby. I have become absolutely compulsive about oral hygiene even setting my phone timer to 30 minutes after eating so I can rush upstairs to brush the food away.
I can’t use high fluoride Duraphat which brings my mouth out in ulcers so I replace it with a Oranurse which has no foaming SLS or flavour. A fluoride mouthwash is used in between brushing. At night time I use GC MI paste which replaces the calcium around my teeth. I discovered this on the Internet and my dentist says it’s really good for sensitive teeth and anybody at high risk of caries. I use this last thing to brush my teeth before bedtime then pop a Xylimelt under my cheek and that does me all night. Occasionally if I wake with a dry mouth the an inch of Xyligel sorts that out.
I also go through industrial quantities of gum…..sigh! I hate chewing gum but it really does work in keeping my mouth moist. Instead of frantic chewing I have been practising parking it under my cheek….with some success
Finally, at great cost from the USA I’m trying some cannabis to help me sleep. I have been getting restless with daft and disturbing dreams recently; nothing to do with a dry mouth which is under control. Oh well……worth trying
This last couple of days I have been wrapping presents for the Radiographers on LINAC 1 and the Head and Neck Nurse Support Team at The Singleton Hospital
There’s a bottle of Prosecco and a jar of our honey and I might add some chocolates too. Last year I was getting zapped daily and I was in no fit state of mind or body to pay much attention to Christmas. I’ll drop these in at my next appointment in December. I so enjoyed wrapping them, it cheered me up no end 🙂
Yesterday the BBC reported was some excellent news about a drug trial for head and neck cancer that was advanced, had recurred or had spread. https://www.bbc.co.uk/news/health-50507069
In a trial, pembrolizumab kept head and neck cancers at bay for an average of two years – five times longer than under chemotherapy.
The patients also suffered far fewer side-effects.
What is immunotherapy?
It is a treatment that does not kill cancer cells itself but instead stimulates the body’s immune system to attack them.
Pembrolizumab is already being used to treat a wide range of advanced cancers, including melanoma – a type of skin cancer that spreads easily.
Experts believe the drug has the potential to treat many more.
So who could benefit?
The trick is identifying people with tumours that will respond, says Prof Kevin Harrington, consultant clinical oncologist at The Royal Marsden NHS Founation Trust, who led the study,
A test for the presence of immune marker PD-L1 in the tumour means doctors can work this out.
Prof Harrington says approximately 85% of people with advanced or relapsed head and neck cancer would be eligible for pembrolizumab – around 1,300 patients a year.
What does this mean for patients?
“This study is very exciting”, says Prof Paul Workman, from the Institute of Cancer Research.
“Firstly because it shows that immunotherapy can have dramatic benefits for some patients with head and neck cancer when used as a first-line treatment, and secondly because the researchers have devised a test for picking out who is most likely to benefit.”
The BBC is reporting a paper that was published in The Lancet a year ago………………… but better late than never 🙂
The drug is Keytruda which has hit the headlines recently because it is hugely expensive and the NHS has managed to negotiate a price reduction with the manufacturers. It’s already in use for other cancers The findings are: Based on the observed efficacy and safety, pembrolizumab plus platinum and 5-fluorouracil is an appropriate first-line treatment for recurrent or metastatic HNSCC and pembrolizumab monotherapy is an appropriate first-line treatment for PD-L1-positive recurrent or metastatic HNSCC.
While the drug is available for head and neck patients in Europe already and the FDA licensed its use in the USA in July this year we are lagging behind
Today I woke up to this
The day proved to be a Shepherd’s Delight not a warning. The sun shone and it certainly made me feel alive.
Time to get out of this pit of indolence and get fit again. I used to run. Nothing serious since that London Marathon more than ten years ago, but I enjoyed the odd five miles in the Welsh lanes and I had a two and a half mile flattish loop that I used when I was being lazy. What has put me off has been my dry mouth. I find it hard to breath through my mouth as everything dries up. So the first stop was the rower and a mouthful of chewing gum. I set the resistance to five, which is what I used to row 5k with on a rainy day, and tried a kilometre to start with. Not bad! Yes, it was hard to maintain a decent speed but I got there with only minor discomfort. Running shoes soon. Watch this space.
Mooching around the internet, as you do, I found this. It’s one of many articles from USA hospitals.
Quality of life is so important especially as so many younger people are being diagnosed, cured and living for many years with the sequels of radiation.
Then I found this
So disappointing. We can only hope that one day we can look forward to IMPT being as routine as IMRT
I have bullied Stan into growing a moustache
So we are crowdfunding for MacMillan Cancer care
You can donate here if you fancy https://www.justgiving.com/fundraising/stan-akrigg
Stan has decided he might keep it….Grrrrrrrr. Looks like I’ll have to bribe him to shave it off.
Fund is nearly there. Just a few quid short so I’ll top it up if necessary before the day’s end. Well done everybody!
I am now nine months post treatment and on two month check ups split between the surgeon and the oncologist.
On my latest visit I asked about checking my thyroid hormone levels and my carotid arteries.
Radiation to the neck can destroy thyroid tissue and 50% of people need thyroxine therapy so monitoring is advised from a year and a half out.
Similarly Carotid arteries can develop atheroma years later. The advice I got was to keep my cholesterol and blood pressure down and to maybe monitor from three years.
I can’t believe how much better I am; how much better I feel. I see improvements every day.
I can eat anything apart from chilli. Some food needs a little sip of water, food like bread and chicken but by and large nothing is off limits
My throat is still dry and prickly and maybe I will have to get used to that. The mucous membrane has been compromised and my palatine uvula, that dangly thing at the back of the throat, has been incinerated to a stump and its associated salivary glands rendered useless. Chewing sugar free gum gives me a pleasantly moist mouth so I can’t complain.
My taste is still hit and miss though improving.
My energy levels are so improved that I’m looking at running again. There is a flattish two and a half mile loop from our house. I’m determined to at least try even if I have to carry a bottle of water with me.
Heavens…..I seem to have pulled out of the tunnel.
To anybody just starting on this expedition I can say it’s hard, bloody hard but you can do it. I was 67 when I started and I’m still here nearly a year later and I’m well.
I have made a few friends on the Macmillan community and one of them Hazel has a blog here: https://radioactiveraz.wordpress.com Check her out.
She is trying acupuncture for her salivary glands so that is my next step too.
Watch this space.
Since then Stan and I have visited his mum and his children and grandchildren. We upgraded our camper in February to a bigger new mobile home so that our collie Bracken can come with us in comfort.
We visited the Malvern Autumn Show and walked three miles there and back and I felt comfortable with it.
This summer we had hundreds of Painted Lady butterflies in our field, dancing on the Knapweed. They were there for weeks; something to celebrate and the like of which I’m not likely to see again
We keep bees and I find pleasure in them again. I have jarred different kinds of honey, worked on pretty labels, and made candles and fudge to take to Conwy Honey Fair. Note the prime spot in front of Drew Pritchard’s shop. This is our fifth year there but last year had been overshadowed by uncertainty and my heart wasn’t in it.
We gave both my consultants some honey. I felt I wanted to do something for the nurses too; maybe a case of wine for Christmas.
How do you thank a complete stranger for saving your life? Perhaps I can win a 100 million on the Euro Lottery and buy Morriston a TORS unit 🙂