Gearing up for Jubilee

The jubilee weekend is nearly upon us, we are hoping to get to Goodwood weather permitting, as they have a best of british car event. We have an old lotus, which we thought we would take along ( known affectionately as Loads Of Trouble Usually Serious). It has been polished so much over the last few days it has nearly disappeared.

The good news is that although the stone chips have driven him crazy, it has also kept him very busy, so although he is now aching more than usual , the extra activity does help him sleep , once the painkillers kick in. Always such a balance between activity, pain and sleep. When you are relatively healthy there are so many compromises you don’t even have to worry about.

Next stop will hopefully be going to see some of the boats moored up for the Thames pageant, assuming the rain holds off, we will be wandering down to the river tomorrow evening. Would love to see the Avenue of Sail , but although lots of info about the fact it is there from Saturday , no news on when it finishes. Don’t want to brave the crowds over the weekend to head right across London, could probably get to Paris quicker, so will have to wait and see if this one works out.

Oxford Street  is festooned with Union Jacks and red , white and blue window displays.  Selfridges windows are great, loved the corgi theme running through them .It really does look as though a big party is about to happen. Let’s keep our fingers crossed the sun shines for a great party weekend we can all enjoy. Here’s hoping everyone’s pain goes away until next week, all the chemo allergies stay under control and we all get a chance to have some fun.

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• Diamond Jubilee Pageant bells ring out in rehearsal (itv.com)

hay fever strikes

Having suggested a walk yesterday evening down to the Thames, it has come back to haunt me as he has been so wheezy today , he has found it so hard to catch his breath.  The strong winds here have stirred up all sorts of pollen and pollution, so even with two good lungs I can feel it.

It did mean he had to spend most of the day in bed, as he was so tired, although revived around early evening to help me water my small courtyard garden. As it is  all pots it does need watering and a hosepipe ban does mean a lot of watering can trips.

We have had such good week, at times the dreaded meso word has seemed a bit of a mirage then today hits when he is so breathless that you realise it is only to real. Thanks Linda, Jan , Anne and Dawn for your comments, it means a lot to know other people understand, even when you have never met.

Here’s to a good jubilee for us all

A great day

We had a great day yesterday, made even more special by the sunshine. We pottered about in the morning and afternoon, sitting out in the garden reading books  and having lunch. Then a big sprint to change into our posh outfits as we were off to the Opera.

This was particularly poignant for us  as we originally had tickets to go in November 2010. Not mad keen opera fans but we liked to go to one a year in town , so had booked La Boheme, ages in advance. Then of course October we got the news of the mesothelioma diagnosis, pleurodesis followed quickly , so no chance of going anywhere. Given La Boheme is someone dying from a lung disease didn’t think it was the best thing to see, even if he had been well enough.

Luckily as the tickets are so expensive, I was able to cancel and get a credit note that lasted two years. Last night we were able to use that for tickets to Madame Butterfly, which was truly memorable, visually stunning, don’t think I have ever seen anything as beautiful at a theatre.

We had dinner out first and Ray admitted when we cancelled originally he never  thought he would ever actually go , that he would still be here to see anything. At the time I got the credit note through I remember wondering if I would be going with Ray  and if not whether I could bear to go with anyone else.

Good to see we got there after all- and it was the worth the wait.

The sun has got his hat on…..

Summer is here, yippeee, the sunshine makes such a difference to Ray, the warmth makes him feel so much stronger and more positive. He spent yesterday in the garden , am so jealous as I was at work.

Am in the bad books though as I met up with friends last night and forgot my house key, so had to get him out of bed to let me in ….. Not happy!!

We are planning quite a few things over the next few days so that we can get out and about walking to make the most of the good weather. There is a big open air art exhibition near us that finishes this weekend, we have been putting off going as it has been so miserable, so that is on our list. There is also an open garden weekend , when some of the private gardens bordering the Thames open thier doors, a number do it for Macmillan so thought we should go and support the cause.

We are out in town tomorrow so will have a short tube journey but hopefully not too busy as wont be rush hour, then there is trip to a riverside pub and a country journey to look forward to. Busy few days ahead

Springwatch

After battling through gale force winds, hailstorms and bitter cold, it’s good to see the return of a typical british spring. The good news is, the hose pipe ban definitely hasn’t had any impact on my garden. I certainly haven’t needed to worry about any extra watering. Although quite a few plants look a bit bedraggled from the hailstorms.

As well as watching out for some warm weather ( probably due around 9 September when the paralympics ends) we are also on Coldwatch. It’s in the final stages with me, so Ray is now on defcon 3 to spot any signs with him. Every snuffle is being viewed with suspicion and hard down by looks coming my way – technically am not sure you can be accused of hypochondria when you have terminal cancer.

We are looking at how we can celebrate the Jubilee weekend, there is lots on in London, I would love to see the River Pageant but with over a million people expected , not to sure you would get that much of a view if you don’t camp out from early morning. There is a street party on the Monday on our local high street, which will be fun to go along to , so that looks possible.

There seems to be so much planned, it’s working out what will be easier to get to and not totally overcrowded. Since his diagnosis , but particularly since the chemo, Ray has become much less confident as an individual when it comes to big groups. He notices he gets much more anxious in crowds and almost has to fight from having a panic attack. I don’t know if this is quite common, he’s fine with people he knows or small groups thee idea of a crowd of strangers or a packed tube fills him with horror ( then again who is keen on a packed tube)

Watch this space on what we decide – I’m just happy 18 months after diagnosis, there is the chance for us to attend anything.

Heated chemotherapy after surgery

This seems to be a treatment that is becoming more regular in America, but I haven’t heard of any such procedures in the UK. There is more evidence that washing heated chemotherapy drugs through the open body cavity after mesothelioma surgery may help stop the cancer from spreading.

A team at the Washington Cancer Institute followed the movement and absorption of these drugs – known as pharmacokinetics – to assess their potential for effectively killing spreading mesothelioma cells without harming healthy tissues.

During a surgery called pleurectomy and decortication (P/D), the surgeon may remove all or part of the diseased pleural membrane and scrape cancer cells off the surface of the lungs or the walls of the body cavity.  To help kill mesothelioma cells left behind after P/D, surgeons may use hyperthermic intrathoracic chemotherapy.

The Washington Cancer Institute team washed a solution of the chemotherapy drugs mitomycin C and doxorubicin into the body cavity after a P/D operation.  They then monitored the concentration of these agents in the tissues as well as in the blood plasma.

In a summary of their findings, lead study author Paul Sugarbaker writes, “Our results showed a persistent high concentration of intrapleural (around the lungs) drug as compared to plasma concentrations.”

The authors suggest their findings provide “a strong pharmacologic rationale” for hyperthermic intrathoracic chemotherapy in people with metastatic peritoneal mesothelioma.  The research appears in the most recent issue of Gastroenterology Research and Practice.

red wine a treatment for mesothelioma?

There’s new evidence the component in red wine that has long been known to fight heart disease and some cancers may help do the same for malignant mesothelioma.

Resveratrol is a natural phenol derived from the skin of red grapes.  It has been linked to the “French affect” wherein the French appear to enjoy some cardiovascular protection against dietary fat. In recent years, resveratrol has also been the subject of numerous cancer studies.  A Korean study represents the first time resveratrol has been tested against mesothelioma. To test the impact of resveratrol on malignant pleural mesothelioma cells, researchers treated cell samples in vitro (in the lab) with 0-60 µM doses, researchers report, “Cell viability was decreased and apoptotic cell death was increased by resveratrol.”

The impact of resveratrol was equally promising in lab mice.  In summarizing their results  the Korean team concludes, “Our results strongly suggest that Sp1 is a novel molecular target of resveratrol in human malignant pleural mesothelioma.”

So an extra glass of red wine tonight it is!

Another cold day

Cold both in terms of weather and in terms of my health, have had some spectacular sneezing today. The good news loads of room on the tube, funny how people can all squeeze down the other side of the carriage. The bad news is the reaction back home, when Ray is just virtually walking ahead of me with a bell shouting unclean, unclean. If i hear one more comment about how important it is he doesn’t catch anything,…..

He is getting up early to drop me off at a meeting tomorrow morning, so won’t complain too much. On a positive note if he doesn’t catch anything hopefully means his immune system is back on track

A spring cold

For once it isn’t Ray’s health, it’s mine! Have been full of a cold these last few days, it started on Thursday with that suspicious sore throat, lulled me into a false sense of security on Friday , when I thought it was a false alarm, only to return with reinforcements on Saturday. Streaming nose, sneezing you name it , I have been staring in my own advert for cold medicines.

There has of course been a total lack of sympathy, other than the occasional mutterings of better hope I don’t catch it, veering away whenever I get too close and generally hiding behind his home made surgical/ hanky mask, he has not been a good nurse. Ideally he really wanted me to move into a tent at the bottom of the cold. Luckliy it has been a bit too windy !

In general from the few glimpses I have seen of him from behind the hanky, he is doing OK. No more night sweats although he does look tired. He managed to wash the car, struggling manfully with buckets of water – this was about 4 hours before the hosepipe ban was officially lifted, which led to much cursing.

Otherwise we have been confined to the sofa, other than a couple of short walks to the shops. Next week looks pretty much more of the same, think we are both thinking a holiday would be nice, if we can face the thought of an airport!

surgery plus light therapy positive for mesothelioma treatment

A mesothelioma treatment approach that includes light-activated chemicals and a lung-sparing surgery is being called “safe” and “encouraging” . Radical pleurectomy and decortication (P/D) involves the removal of the thickened pleural membrane around the lungs and separation of the pleura from the chest wall. The goal is to allow the lung to expand more easily. Because it is less likely to remove all of the mesothelioma cells than the more extensive approach known as Extrapleural Pneumonectomy (EPP), some doctors have only considered P/D for patients who would not tolerate lung removal. The debate among the world’s mesothelioma experts continues.

But at the University of Pennsylvania, doctors are achieving notable success in treating mesothelioma with a combination of P/D and adjuvant photodynamic therapy (PDT). Photodynamic therapy involves the treatment of cancer cells with a light-sensitive agent and light in the hopes of disrupting cancer cell DNA.

In their newly-published study, 38 patients underwent the two procedures. Thirty-five of the 38 (92%) mesothelioma patients also received systemic chemotherapy. Ninety-seven percent of the patients had stage III/IV mesothelioma and most (82%) had the most common epithelioid variety.

Many newly-diagnosed mesothelioma patients die of the disease within a year. But after radical P/D and PDT, the median survival in the University of Pennsylvania study was 31.7 months for all 38 patients. Patients with the epithelioid subtype lived even longer with a median survival of 41.2 months.

In 97 percent of the mesothelioma patients studied, surgeons report “macroscopic complete resection” of the mesothelioma tumor using this lung-sparing technique. Interestingly, although overall survival was longer than usual for patients with epithelial mesothelioma, the time it took for their disease to begin growing again was not. The researchers conclude that this may be due either to the preservation of the lung and/or to the PDT.

Their study, published in the Annals of Thoracic Surgery, ends with this upbeat summary: “We conclude that the results of this lung-sparing approach are safe, encouraging and warrant further investigation.”