Sunday, 11 November 2012

coming out of purdah - chemo cycle 2, days 9 - 14

After his bad experience of fighting an infection whilst having his first cycle of alimta/pemetrexed and carboplatin chemotherapy, Steve has been very anxious about the risk of picking up an infection on cycle 2. He has felt so vulnerable that he has been reluctant to leave the house this last week for fear of coming into contact with a person infected by some bug or another.  

However, Steve had to brave the outside world on Wednesday to collect his folic acid prescription from the local chemist, as it wasn't ready when I tried to pick it up on Tuesday before leaving for Guernsey on a work-related trip. Although he had felt sorry for himself on Wednesday, by the time I returned home on Thursday evening, Steve was feeling decidedly more chipper, even though I had brought a cold virus back with me.    

Having been exposed to an infection in spite of all attempts to stay "clean", Steve decided to emerge from self-imposed purdah and join me on a trip to London yesterday, by which time my cold was in retreat.  We met up with daughter Katie and partner Ed and accompanied them on a second viewing of a flat they had looked at earlier in the week. The viewing went well and over a pub lunch washed down by mulled cider, we hatched plans to make an offer. We'll have to wait until Monday to hear the vendor's reaction, but at least the first step has been taken now and the process of helping them find a new home has shifted up a gear.

Steve's mum has also taken a step forward on the home front, having been discharged from hospital last Monday and moved into a care home to "convalesce".  Like all changes, it will take her a while to adjust but we are hoping that she will soon settle down and are looking forward to visiting her in Bristol next weekend, all being well.

In the meantime, a busy week lies ahead of us.  I will finishing my work from Guernsey on Monday and Tuesday.  We are both going to the inaugural meeting of the Oxford mesothelioma support group on Wednesday, and I am due to give blood later that day.  

Thursday is Steve's hospital day, with an appointment for an X-ray first thing to assess whether two cycles of chemo is having an effect on the mesothelioma and to talk to the oncologist about the results and how Steve is getting on with the new anti-sickness drugs.  Fingers crossed it will be good news, or at least not bad news. Assuming it's worth carrying on with treatment, Steve will have his bloods done at the GP surgery on Friday and we can then enjoy a last weekend feeling relatively good before chemo cycle 3 starts on Monday 19 November.

While I have been working way from home, meso warriors Mavis, Debbie and Jan supported by Linda Reinstein of the ADAO in the USA and many others worldwide have been busy challenging Roger Helmer MEP who thinks that white asbestos (chrysotile) does not pose a measurable health risk.  What a stupid, ignorant man. The World Health Organisation acknowledges that ALL forms of asbestos are carcinogenic to humans.  There is no safe level of asbestos exposure. Ask the families and loved ones of Denise and Jo who both lost their lives to mesothelioma this week.  

Our paths nearly crossed with Denise at the Mesothelioma Patients and Carers Day in London on 6 October.  We didn't attend this event because Steve's chemo started the following Monday and we wanted to spend that weekend with family and prepare ourselves mentally and emotionally for the journey ahead. It's shocking to think that Denise was only diagnosed in April this year, was well enough to travel to London in early October and is now dead just a month later....a horrible reminder of just how aggressive this cancer can be when it takes off.  Our hearts go out to her family and friends, as well as the loved ones of other mesothelioma victims whose life journeys ended this week.

The meso bloggers have been busy on other fronts too!  Jan has thrown down the challenge to researchers, and those who fund research, to find a way to cure this avoidable disease and increase the number and range of clinical trials available in the UK (which is pitifully small compared to the USA). Why should your ability to take part in a clinical trial depend on where you live?  Cancer Research UK says that it is promoting more research into harder to treat cancers (including lung cancers) with the poorest outcomes. Whilst survival rates for other cancers have been steadily improving over the years, survival rates for these cancers are still low.  Cancer Research UK aim to improve this, but when will we see the benefits for mesothelioma sufferers?

As Amanda pointed out in her blog, more people die each year in the UK as a result of mesothelioma than are killed in road traffic accidents - one death every five hours in fact. The numbers have yet to peak. This is now expected to happen in 2016.  However, although workplace exposure is less likely these days, more people are being exposed to asbestos dust through DIY projects in buildings constructed or refurbished in the 50s, 60s and 70s when asbestos was widely used for insulation and in other products such as floor tiles, ceiling tiles and coatings, asbestos cement roofing slates, lagging heating pipes and systems, including many used in system-built schools of the period.  

No longer an "old man's" disease, younger men and many more women of all ages are being diagnosed as a result of secondary exposure to asbestos dust being brought home on clothes of loved ones, or directly though employment - exposed in the place of work by people (like Roger Helmer MEP) who claim to believe that certain types of asbestos do not pose a health risk, or those who are well aware of the risks, but are not prepared to shoulder the responsibility of protecting their employees from such risks.  Shame on you.  

Asbestos in schools continues to pose a threat to the youngest members of our society and those who teach or provide support in schools.  Few local authorities have the resources to identify and remove all asbestos in educational premises, but unless this is done are we not creating more innocent victims for the future?  

Meanwhile Steve's battle goes on as he enters the last week of chemo cycle 2.  Come back later in the week to find out what effect this treatment has been having on Leo.  The fight is well and truly on!

1 comment:

  1. Linda what a battle cry you are calling too, United we are all standing together in a world who doesn't want to know about us. We need it out there, Mesothelioma is a big killer and they still call this rare!

    Good luck to Steve, his health is important to us all.