Cliveden House (Photo credit: Wikipedia)
It’s been a busy few days, work has been hectic and has involved a few days in Birmingham, not the most glamorous of destinations. Whilst there the weather was terrible , at one point while trying to get a taxi gale force winds were nearly blowing me over, followed closely by horizontal rain. Lovely!!
Think I was a bit to keen to pack away all my winter clothing, I had to get my winter coat back out this week, but so far I have resisted the return of the woolly tights. Although the heating is back on, much to the cats delight.
We spent the weekend visiting Cliveden House, which was lovely. The house itself is now very smart private hotel, but the grounds are open and owned by the National Trust. As well as some magnificant yellow tulips there is a beautiful woodland walk that sweeps down to the Thames. Of course what goes down also has to come back up – up 173 steps in fact . We were both huffing and puffing after that.
This weekend we had hoped to manage to get out and about , so hopefully it won’t be too wet. It makes such a difference to Ray when the weather is better, warmer weather is easier for him to breathe and we both get such a boost from some sunshine.
Plans are also underway for our birthdays in August, there are of course hospital visits and scans before then , so plans are a bit loose. We have a date and that is about it so far, still at least it is a start
The link between chrysotile asbestos and illnesses such as mesothelioma will be high on the agenda when the sixth UN Rotterdam Convention meets in Geneva, Switzerland in late April.
The group, made up of representatives from around the world, will be considering whether or not chrysotile or white asbestos will finally be added to the list of Controlled Hazardous Substances. In order to include chrysotile asbestos on the list, the vote of all represented countries must be unanimous. In the past, countries that still export, import or use asbestos, including Canada, Brazil, Russia and India, have worked to keep chrysotile off the toxic list. India withdrew its objection in 2011, but Canada has held its ground.
According to an article in The Lancet, chrysotile asbestos is the only type still produced and accounts for more than 95% of all asbestos mined. Despite the mesothelioma risk, Canada, Russia and several other countries continue to maintain multi-billion dollar asbestos industries, selling it primarily to underdeveloped countries such as Bangladesh where regulations may be lax or nonexistent.
Although news reports in advance of the Rotterdam Convention, which runs from April 28 to May 10, suggest that Canada may finally stop opposing chrysotile’s addition to the toxic list, several other major players still oppose it. In a joint statement released in February, the WHO and the International Agency for Research on Cancer stated that all forms of asbestos are carcinogenic and called for an end to all uses of asbestos
The last few days have been busy as we make sure we enjoy the sunshine, lots of walks out and about over the weekend, lots of daffodils but the trees are still really bare so that it looks more like February. We came across a lovely Italian restaurant in a nearby village and stopped for an impromptu lunch, isn”t is extra special when you get an unexpected treat!
More mundane things have seen cars taken in for service, new tyres sorted and various insurances sorted out. Feeling suitably optimistic and taking a leaf out of Aussie Steve’s book we have also looked at improving the house. The back garden has always been a bit of a pain because of it’s situation it’s either too windy to sit in or too hot when you actually do get some good weather. Before diagnosis there were plans for an improved patio, pergola and new planting to provide some protection from the wind.
This all went totally off the cards with the meso diagnosis, then last year the weather was so awful there was no point . This year inspired by the warm weather the plans have resurfaced and builders contacted. The next scan is July but he has his determined head on that why not go ahead with the plans now and get the benefit.
At last some good weather, we were out and about over the weekend making the most of the spring sunshine. We managed a three mile walk through the fields, it was meant to be four miles but I was in charge of the navigation so we seemed to cut a bit off at one corner. Unfortunately that meant we got to the pub quicker than expected – shame!
The pub was a great find The Leather Bottle in Mattingley, full of charm, great food and lovely service. Despite a yummy chicken pie I just about squeezed in a dessert, probably needed that four mile walk after all.
Not only is spring starting out in the countryside, it is definitely afoot in my garden. Though rather confusingly my tulips are now in full bloom whilst my daffodils are still in bud and don’t look as though they are anywhere near flowering.
There has been non stop flirting going on for the past few weeks, but it now looks as though the blackbirds, sparrows and wren have settled down in my ivy hedgerow again. There is certainly a lot of flying in and out and a great deal of fussing going on. It is very well protected form cats and they all raised successful nests last year.
Next door developers are due to start shortly so there is going to be a lot of noise and dust. The root of the ivy is next door so I am hoping they don’t come in and destroy it. Not only will it leave my garden exposed there’s a chance it will destroy the protection the nests currently have from the elements and predators.
Back from a hectic few days in Paris, when we definitely made the most of the trip. We had a guidebook with suggested walks, the idea was you picked a couple, we managed to do most of them. Walking back from the train station at the end of our journey was so sore on my feet, I could just about manage slippers for the next two days.
Ray was in fact the healthier of the two of us as I had a terrible cold, luckily he hasn’t picked it up. Am beginning to think he now has a super duper immune system, as he hasn’t picked up one of my colds so far this year- long may that last.
He even managed the steps up to Montmartre without a break, with me wheezing along behind in his wake.
Paris was fantastic, cold but sunny, so it had a touch more Spring about it than the UK. I loved all the little shops and the architecture. We stopped off for various aperitifs and snacks on our journey round the sights. The hotel was lovely, although staffed by very self assured , well dressed people, so I felt seriously under dressed and scruffy , coming in each time with my bright red nose and tissues escaping from my pocket.
Back now to the first day of summer – ha ha. We decided against walking down to see the boat race as too cold. The good news is Ray is back off the painkillers and no more nose bleeds, so lets hope for some more good days. He has also started taking the PSP- PSK supplement for his immune system that I mentioned a while ago.
Having decided to cut back on the pain killers, no more nose bleeds and strangely less pain. Overall sleeping has been pretty good and he is back in a generally good phase.
Taking a leaf out of Linda and Steve’s book on how much can you do in two days about their time in Bristol, we have aimed slightly further afield and gone for France- so next week we are off to Paris on the Eurostar for two nights.(assuming the snow won’t cause a total no show- in fact if you hear any stories about Eurostar nightmare for passengers , please think of us).
If the Eurostar does go wrong, I don’t think I’ll ever get him out of the country again, having already had a few torrid experiences at airports.
First of course we have to get through the horizontal sleet that signifies a spring weekend in Britain. terrible stories coming in from around the country about people being stranded. This seems such a long winter- here’s hoping Mavis is right and we’re going to get payback by having a lovely long summer
After a stable result at the last scan, you would hope there would be a few days of relief and some good times, but in fact we seem to have gone backwards. He is still in a lot of pain particualry in his neck and right shoulder, this is apparently caused by the nerve in the diaphragm being stressed.
The problem with the pain is it really affects his quality of sleep, and boy does he get grumpy if he doesn’t get enough sleep!
The ibrubrofen was working fairly well, but he has recently switched to celecoxib twice a day. This is the preferred painkiller for meso apparently as the active ingredient is currently in trials connected with restricting the growth of meso cells. There is however what appears to be one really big problem, he has started getting really bad nose bleeds that are both heavy and last intermittently for up to 4 hours.
Checkin out all the small print, nose bleeds can be one of the side effects of the painkiller . Would be good to know if anyone else has come across this problem before he goes back to the mega strength ibruprofen. Anything that contains opiates like oromorph really disagree with him and cause as many other problems as they solve , so aren’t really an option.
This terrible weather doesn’t help, the cold air aggravates the pain and it’s pretty miserable going out for a walk in this rain.
Following on from the visit to the oncologist at Barts on Friday, we have bit more information and understanding. Basically there is this low activity at the base of his lung, at the top of the diaphragm. This has been visible from the very first PET scan two years ago. At the time it was unclear whether this was just inflammation from the various pleurudesis and surgery, or if it was connected to meso.
Two years further on it seems far less likely to be inflammation and far more likely to be meso. On the good side, the activity level itself hasn’t noticeably changed, so the meso that is there isn’t doing a great deal. I thought the oncologist used a really good phrase “it looks as as though your body is in equilibrium” and long may it last I say.
He also referred to a patient of his diagnosed back in 2004, who is still clear but has had a number of chest infections and he wondered if these had caused his immune system to ratchet up to deal with the infections , which had also helped control the meso.
What does seem to be clear from the research going on through out the world , is there is more and more interest in how the immune system itself deals with all cancers and a lot of the new treatment focus on working with the patients immune system to help control the tumour growth. So the immune boosting supplements sound a useful adjunct to other cancer treatments.
The next scan is scheduled for July, when very impressively Ray is booked in for the scan in the morning and the results in the afternoon. they now have new voice recognition technology in place so the radiologist reads out their report on the scan as they view it !!
It is so hot at the moment, please note this is not a complaint just an observation. It’s been a gorgeous few days, Ray went sailing yesterday with his dad and had a great time. Ages since he has had the energy to go sailing so am so pleased he managed to get out on the water and enjoy the sunshine. We also perfected our cocktail making skills with a mean cosmopolitan, very sophisticated drinks in the garden now.
We are away next weekend for our birthdays, a trip to Goodwood races has been planned – just checked the forecast and looks as though it will be lovely all week turning to rain jest in time for the bank holiday weekend – last year we went and although not wet , it was chilly so maybe this year it will be a bit warmer- we are staying over at a local hotel so will be good to get away even if only for a very short time.
The check up scan is looming – so good to have some nice things to look forward to us well.
Beautiful photo to share with all meso warriors from @taylorherringpr for those on twitter