Although I have finished chemo I am on a monthly injection of Darzalex, the trade name of the drug Daratumubab which is difficult to say let alone spell. It's a type of targeted therapy and is sometimes called immunotherapy and not chemotherapy, however, I am still experiencing the same side effect as when I was on chemo which show no sign of diminishing.
I had organised a Mendip Cavers Reunion for April 1st to record the caving songs we used to sing. Over 50 were expected to attend but then we had a surge of the Covid19 virus among the Mendip caving community so we decided to cancel the event.
People were coming from far and wide in the UK and James Cobbett from Panama although he was prepared for a cancellation and will use his time here for a tour of Britain.
There will be another attempt at a cavers reunion on 2nd August. This is on a rest day in the middle of the planned sponsored walk along the 102 mile long Macmillan Way for that cancer charity and in memory of my late wife Sue who died from cancer in New Zealand nearly two years ago.
Update 11/04/2022
April is unable to decide if winter is over yet with temperatures changing weekly between the high teens and sub-zero.
Unfortunately my routine has been disrupted by my testing positive for covid19.
I visited my daughter who was suffering with a bad cold but we kept our distance. Never the less a few days later she tested positive for covid and I followed suit. The symptoms were mild and the NHS response worked perfectly for someone who is immunodeficient.
A doctor from Musgrove Hospital in Taunton called me within 24 hours and followed up a day later to monitor my symptoms. A week later and I have slight cold symptoms but all my cancer treatments have been postponed for the time being.
I am now isolating and as my daughter is now sunning herself in Corfu and my son-in-law is in Jersey on a scouting trip with the youngest grandchildren, my eldest granddaughter Liza is on Grandad watch and keeping me fed and watered.
Unfortunately the side effects of the chemo, principally my appetite and nausea continue. An Endoscopy had been arranged to further investigate but that has also been postponed due to my covid infection.
Health update 28/04/2022
Having recovered from Covid I finally managed to undergo a Endosopy procedure at Bridgwater Hospital, a first time experience for me. I had not eaten or drunk anything since the night before.
I was aware of the procedure as an engineer we used the same principle to inspect engine cylinder bores for wear using a borescope and an endoscope is a refined medical version. Another example of the importance of engineering in medicine today.
| Quote's
wot I like: "Everything not invented by God is invented by an engineer". Prince Phillip, Duke of Edinburgh 10/6/1921 - 4/9/2021 |
I was shown in to the endoscopy room and greeted by the Nurse Endoscopist, Jenny Williams and two nurses who would assist.
Jenny explained that they were of the opinion that my problems with eating were the side effects of chemo but that this procedure was to check that nothing else was amiss in my stomach.
The equipment used to perform the endoscopy was a product of Olympus, a Japanese company that manufactures over 70% of such equipment used today.
Jenny explained that she would first give me a anaesthetic throat spray which tasted awful but this months flavour was supposed to be banana!
One nurse held my head, placed a plastic mouthpiece in my mouth, told me to bite on it and to concentrate on breathing. The other nurse attended to the equipment. A series of instructions from Jenny was given to the other nurses from time to time which were medical terms I did not understand. The experience was unpleasant as the tube was inserted but did not hurt and I emitted some rather loud burps! Nobody laughed so I assumed that was normal.
After about 5 minutes it was all over and I resumed a sitting position. Jenny then explained that she had a good look around my stomach and duodenum, took a few photo's and found nothing untoward. She had also taken a biopsy to exclude coeliac disease, noted a small hiatus hernia but did not anticipate any future problems arising from the biopsy.
Blazing June arrived but still with a cold breeze. The electrics in my house died and a new master switch was installed but it necessitated me staying several days at my daughter's place.
Further investigation found numerous faults in the wiring and most of the sockets will need rewiring so it looks like I will have electricians in the house for some time.
Health update 09/06/2022
The side effects from what the medics call Maintenance which is a monthly injection of Darzalex continue but I have managed to get out walking about 2.6 miles a day recently.
My white blood cell count was a little high at 11.43 and the free light chain ratio good at 0.3. The paraprotein was up from 0.8 to 1.1.
I am experiencing an increase in pain levels in my lower ribs and right hip so I have just taken a whole of body MRI scan to see if there has been any change in the bones.
The thermometer reached 30°C on the day I set off over Lydeard Hill to Wills Neck, the highest Quantock Hill. Even the ponies stayed in the shade of the beech trees as I completed a 3.5 mile walk.
I was referred for radiotherapy treatment as a result of the MRI scan and this took place two weeks before the Macmillan charity walk. Initially the pain levels were worse but gradually my hip pain was reduced by the time I began the walk so it worked.
The other side effect has been loose bowels but I won't go into details!!
Macmillan Way West Charity Walk update on 10th August
The above photo is at the start of the walk on 28th July outside Douglas Macmillans house in Castle Cary. From L to R Stuart Macmanus, Mike Palmer, Me, Anna Hossack and James Cobbett.
Anna had travelled from her home in the South of France and James from his home in Panama just for this event. James was also walking for his late wife Marilyn who died from Cancer shortly after my wife Sue.
Murdo McCleod was due to join us from Scotland but contracted Covid just before so could not come.
Courtney Salway and Mathew Shooter joined us for the first days walk and we collected our first cash for Macmillan in the pub at Charleton Adam. The next day saw us stopping at the Devonshire Arms at Long Sutton where Chris Hockey and his golfing mate Paul baled out but we were joined for lunch by Ann and Jeremy Clifford with Carol Hockey. I wish I had baled out as the temperature reached 30 degrees and we all suffered across the moor to finish at Langport.
The stages between Langport and North Petherton and onwards to Lydeard Hill were well supported by my family and their friends Natalie and Cyril and family. Most of us finished at Fyne Court where the National Trust refused us permission to collect for Macmillan. The next day across the Quantocks to Williton we were joined by Martin Grass and friend Jeff and were promised donations from walkers we met.
The walk was more than half over now and today the team tackled Dunkery Beacon. Unfortunately it was too much for my body and the cancer nurses at Musgrove Hospital councilled me to walk less so I limited my walk to about 7 miles a day after the first two days and cut out the big hills like Dunkery.
The adjacent photo is of me suitably knackered on the first stage of the walk after about the first five miles.
We had collected about £300 so far from random walkers and fellow drinkers in pubs along the way. Macmillan is so well known and so many people have personal knowledge of their work for family and friends that when they see our Macmillan tee shirts they don't have to be asked for donations but just put money in our collecting tins.
Anna was our star fundraiser and she even persuaded a JCB driver who nearly ran her over to part with £10!!
A few of us went up to Mendip on our rest day for a cavers singing reunion. We had a professional record proceedings and if the recording turns out alright we might make some CD's and sell them for Macmillan. We raised over £200 from those who came and some have contributed later on this web site. We sold all 9 gallons of beer so should make a small profit which will go to Macmillan.
The oldest singer was 89 years old and some of us had not seen each other for over 50 years. My piano playing was a little rusty and the memory of many failed when it came to the more obscure songs.
Above you can see the plethora of microphones and speakers I am surrounded with, isolating me from the singers.
On the walk from Williton our numbers were supplemented by Chris and Carol Hockey, Martin Grass and his friend Jeff. A few of us baled out at Withycombe Hill but the rest were determined to get the steam train from Dunster back to Williton. Despite running the last mile they arrived at Dunster station to see the last train pull out so had to walk back a mile to catch the bus!
The next day for the walk over Dunkery the team were joined by Dig Hastilow, Jeanette and Ivan in addition to Martin's wife Nicola then we were on our own for the long tramp over Exmoor.
The two octogenarians were usually left behind by the others and slowed things down so on the Saturday where I had planned a 14 mile stage, Mac and Anna decided to set off early while James, Mike and myself only did 5.5 miles that day.
The family turned up unexpectedly for this long walk and their friend Natalie and son Max joined them. They walked on after we left except Tom and Tilly who we transported back to the start to retrieve their car and collect them later.
My daughter Beccy, Eldest granddaughter Liza and her husband Ian all turned up on 7th August, the final day, where the distance was actually 8.5 miles and everyone completed it before relaxing in a Weatherspoons pub at the finish.
As I write the total donated so far is £3,911.
Here are a few photos taken by Mac:
And here's some from Anna:
And here's some from James Cobbett:
And her's some more from Mike Palmer:
My health update 22/08/2022
I have now had the second relapse of Myeloma and will start my third dose of chemo next month. This time the drugs are Ixazomib, Lenalidamide and Dexamethasone.
The good news is that the drugs are given weekly in tablet form so no visit of a nurse is required.
This time it is the Lambda free light chain that has increased to 400mg/l whereas a normal maximum is 26mg/l. The paraprotein has stayed low.
When I was first diagnosed in New Zealand the Lambda light chains were 11166mg/l just to put things in perspective.
Scottish Visit August 2022
I drove up to Edinburgh on the last Sunday in August for a few days and stayed with my Uncle Murdo.
We first met up with my old flatmate and caver Goon in Lesley's Bar in Causwayside then the next day we met up with a few old friends in Wee Bennets pub in Morningside. I could not remember ever drinking in that pub but they reminded me we had all met there for a fancy dress party and I had gone dressed as Edna Everidge where I won a half bottle of whisky from the pub as the best dressed!
I had recovered my appetite prior to visiting Edinburgh and remembered a fantastic Chinese meal years ago when Murdo and I demolished a crab in black bean sauce. Unfortunately that restaurant is no longer there but we went to the Loon Fung which was still there and they served us the same dish. You have to get intimate with the crab with your hands so it was a messy but very enjoyable experience!
We also visited the Kweilin a few yards from where I used to live in Northumberland Street and had an excellent meal there.
On my last day there we paid a visit toe David and Theresa Ingram who were our next door neighbours in Northumberland Street. They since sold that house and have bought a great flat not far away about 5 minutes walk from Princes Street and even less from the Magnum Bar where we enjoyed a pint of Edinburgh Gold at the outrageous price of £5.80 a pint.
We then took a cab to Teuchters Bar in William Street to meet up with Robin and Angela Hendry which was very noisy and having any conversation was difficult, however they served a good pint of Timothy Taylors Landlord, quite possibly at an equally outrageous price, but it was good to see them again although as you can see from the camera shake of the photo below that by then I was none too steady on my feet!
Incidentally a Teuchter is described as a derogatory highlands word for an English person. It literally means Saxon but it is also a term used by a lowlander for a highlander.
I drove both up and back without stopping which you may think unwise but the old Jag is so comfortable that I just put it in cruise mode and sat back to enjoy the ride, remembering to avoid hitting anything. That is until I got to Moffat where the road from there to Edinburgh is one of my favourites and where I enjoyed letting the big cat out of the bag. I averaged 55mpg on the trip.
My health update 17/9/22
Following an increase in my free light chain lambda cells last month indicating that the Myeloma had returned I will begin a new course of chemo next week.
The drugs will consist of ixazomib, lenalidomide, and dexamethasone,
all of which are administered orally.
Lenalidomide can cause the formation of blood clots so I will be prescribed a blood thinning drug and will have weekly blood tests for the first month of treatment to closely monitor the condition.
Other side effects are similar to previous drugs I was prescribed in courses of chemo to slow the progress of myeloma which is a recurring cancer and will always return (called a relapse). This will be my second relapse and third course of treatment.
The treatment will continue until there are signs of disease progression again (a third relapse) when another drug combination will be tried.
Mendip Cavers Reunion singsong
Below is a slide show of a few more photographs from the singsong. The event was featured in the latest edition of the Belfry Bulletin which is the magazine of the Bristol Exploration Club.
Here is a link to an unedited mp3 file recording of the singsong. You can download it but beware it is close to 90Mb, quite obscene and far from being politically correct as caving songs often are.
The quality is imperfect as it is converted from a wav file which is ten times the size but is available if anyone wants it.
It is time for a new page where you can find some links to videos of the singing.
Fund raising for Macmillan Cancer Support
I completed a sponsored walk on 7th August 2022 to raise funds for the Macmillan charity along the Macmillan Way West in memory of my late wife Susan who died in New Zealand from a secondary bone cancer. We raised a total of £5053 as of 30th September 2002 as a result but you can still donate to Macmillan by any of the methods below. This link will take you to a page describing the walk.
"According to Macmillan Cancer Support, up to 50,000 people are walking around today with cancer which has not been diagnosed during lockdown." |
Douglas Macmillan 1884 - 1969: |
The Covid epidemic has hit charities like Macmillan very hard as most fund raising has been forced to rely on internet pages such as this one. Macmillan has lost a third of its fundraised income due to the pandemic. It is very difficult to get people to part with their hard earned cash on-line rather than appealing to their better nature's face to face. Macmillan would appreciate whatever you can afford because you might need them some day. Remember that 40% of the world population will be diagnosed with cancer at some point in their lives and nearly 10 million a year will die which pales Covid into insignificance.
