Steady....

Back to hospital today to talk to the doctor and cancer nurse Alana about taking part in the clinical trial of Velcade. More tests and measurements (bloods, weight, ECG, temp, BP, CT scan and X ray - I think that was the lot) to check that Steve is a suitable candidate for the trial, and yet another wait of several days to get the test results back which will give the green light for treatment to start, or not, as the case may be.

Steve has a little red book setting out the main side effects/symptoms to look out for, when/how to contact the doctor if any go into the red/danger zone, and how to minimize the risk of infection once the treatment starts (as his immune system will be weakened by the chemo).

On the way home from hospital, I went to the chemist to stock up on a couple of essentials: an "in-ear" thermometer to check if he develops a fever; alcohol-free mouth wash to help reduce the risk of mouth ulcers and a soft toothbrush, to minimize gum damage when he cleans his teeth. He'll have to give up his live yogurt for the time being, but can drink alcohol if he feels like it. Oh, and dentists visits are out for the duration - there had to be a sliver lining somewhere!

If he's accepted on the trial, he'll start next week with a double dose of cisplatin and velcade the day after the last radiotherapy session, followed by velcade only next Friday, then two more velcade sessions the week after, followed by a week's "rest". The second 21 day cycle is due to start on 28 July, with a similar pattern of one double dose of drugs, followed by three single doses. At the end of the second cycle, there are more tests and CT scans to assess the effects of the treatment. If it's positive and Steve is managing any side effects without too much of a problem, the chemo treatment continues for four more cycles. By my reckoning, the last dose of Velcade is due to be given on 30 October and end of the final cycle of treatment would be 9 November.

The potential side effects do not make particularly pleasant reading, but there are ways to help deal with the most common problems. Even so, it's a bit unnerving to think that the chemo may make him feel rotten, bearing in mind that he feels OK at present.

We find ourselves being pulled in opposite directions - on the one hand, Steve was getting frustrated by the time it has taken to get everything in place to start treatment which felt like an age even though it will begin within three weeks of diagnosis, which is actually very fast. On the other hand, now it's about to start, we are both feeling apprehensive about what effect the treatment will have on him, both in terms of unpleasant, potentially life-threatening side effects and the long term outcome - will it really slow down the growth of the cancer cells, prolong life expectancy and improve quality of life? If it does, then it will be worth it.

Until it begins, we have no idea of how Steve will react. The frequency of hospital visits also makes it difficult (but not impossible) to fit in trips away from home, assuming he feels up to it, so we're still unable to make firm plans to do anything much, apart from putting treatment days on the calendar and taking it as it comes.

And it starts tomorrow - watch this space.....

Ready......

If you have ever been on a Log Flume at a theme park, you'll have some idea of how we are feeling at present. The last two weeks have felt like the long, slow haul up the slope, when you become increasingly aware of how far up it is, you know that there's no escape, and you feel excited and scared in turn at the prospect of what awaits you.

Today we reached the top of the slope, and have leveled out for a few moments to allow preparations to be finalized and the treatment programme put in place, before it's all systems go.

The pneumococcal jab this morning should help Steve fend off the worst chest infections he is likely to encounter over the summer. There will be a winter flu jab with his name on it waiting for him when the chemotherapy course is over later in the year.

He spent some time in the "simulator room" at the hospital this afternoon, not pretending to fly planes but getting used to lying down the hard, narrow bench so that he knows what it will feel like when the radiotherapy starts later in the week. He's been measured up for zapping using circular plastic templates to focus the electrons on the vulnerable "port" areas where the chest drain and thoracosopy camera were inserted, and now has a little abstract design on the side of his chest in ink, which will wash or rub off soon. No mask as such (pity - that would have made a good photo and a talking point at halloween parties).

We even have a pass to allow us to park the car for free on the three return visits for treatment on Wednesday and Friday this week, and on Monday next week.

Preparation for Phase 1 is now complete and ready to go.

Back to the hospital again tomorrow to prepare for the Phase 2 chemotherapy treatment which will follow on. More on that soon.....

Tomorrow

Another family get-together today, this time in Bristol to visit Steve's mum who has a birthday coming up next week. She had already been told about the mesothelioma diagnosis by Steve's brother last weekend.  This was the first time we had seen her face to face since then.  I think she was relieved to see Steve looking his "normal" self - well and apparently healthy - and to hear about the treatment plan, even though it stirred up some painful memories.  

Steve's not the first in his family to have the disease; his dad died as a result mesothelioma in the early 90s, probably due to exposure to asbestos when he worked in the ship-building industry, before Steve was born.  His mum therefore knows what to expect at some point in the future.  However, unlike Steve, my father-in-law had been diagnosed with mesothelioma too late for treatment to be worthwhile.  At least Steve has a fighting chance of living longer with a better quality of life.  

Which brings me to tomorrow, the day when preparations begin to put the treatment plan into action, starting with a visit to the GP for a pneumococcal jab to help him fight any chest infections that come our way in the next few months and finishing up at hospital with the radiotherapy people.  To find out what happens there, you'll have to come back tomorrow.....

One in ten / I'm a survivor

Search on mesothelioma survival rates and you will find a huge variation in life expectancy depending on which website you visit, from 4 months - 5 years.  About 40% of mesothelioma victims live for at least a year after diagnosis, whilst 10% survive at least five years.  A few people live significantly longer.  Survival rates are much better than 20 years ago and have continued to improve over the last five years. People who choose take part in clinical trials tend to survive longer.  

I said in an earlier post that Steve's prognosis is uncertain due to the many variables involved and the crudity of applying such data to individuals.  However, we now know that Leo is living just in one lung.  Steve's age, otherwise generally good health (when was the last time you 60-somethings ran 3-5km?) and the fact that he stopped smoking over 20 years ago all weigh in his favour.  Plus (we hope) he'll be taking part in a clinical trial.  This suggests that he has a good chance to number amongst the one in ten who live for at least five years post-diagnosis.  

Leo - you'd better watch out.  Steve's a fighter. He'll take you on one day at a time and he's got a great team supporting him.

No longer in denial

He's been in denial since March 2007, but today Steve faced up to the fact that he is now a "senior citizen".  He walked into town, claimed his concessionary bus pass, was pleased with the photo on it (better than his last passport picture, he says) then promptly walked all the way home again carrying a heavy backpack, rather than take a free bus ride.  Best walk he's had in ages.  He's feeling good, in spite of the grey skies.  

Upfront and open or silent and secret?

When we first heard that Steve had mesolthelioma, we had to make the first of many big decisions - whether to be upfront, open and tell people about it, or keep it a secret and stay silent.  There is no right answer.  It's down to the individual.  

We knew that the diagnosis would have a radical impact on our lives and that sooner or later, people who knew us would work out that something was wrong. Steve decided to tell the family as soon as possible, preferably face-to-face, or if that was not possible, to break it to them by talking on the phone.  I think I can honestly say that telling our nearest and dearest was one of the most difficult things we have ever had to do.  

A few close friends also found out soon after simply because they happened to get in touch with us or visit by chance around the same time.  Telling the news to these people was nearly as difficult as breaking it to the family.  They were the ones who bore the brunt of our emotions, without first having had the opportunity to come to terms with the news themselves.  

My work colleagues were the next to know - you can't just disappear for the best part of three months without an explanation.  I choked trying to talk to people, but found it a little easier to put things in writing, which is when I started this blog.

Once we had some idea of what we were facing, Steve decided to spread the word to our other friends electronically, mixing the bad news with more positive things and letting people know about this blog so that they could find out more and keep up-to-date with news - or not - as they wished.  

Today, we met several of those friends face-to-face for the first time since spreading the word more widely.  Although they had been shocked by the e-mail, it had broken the ice.  There were no embarrassing moments wondering how to reply to the question "how are you?" or how to respond to an unexpected answer. Just hugs and kisses, an arm round the shoulder or a firm handshake, depending on the individual, and a genuine warmth and concern about this cruel twist of fate, before moving on to/catching up with other news.  Which is the way we wanted it. Thank you.

And thanks to Edith for inviting us to the retirement tea party and for the delicious cakes.  Many happy returns for next week!  It was lovely to see so many old and not-so-old friends, albeit for a short space of time.  Here's to more such occasions!

Trail Blazer

It seems like an age since Monday (although its only four days) but at long last we have received details of the drug trial Steve has been offered. 

Velcade (Bortezomib) is a biological therapy for treating cancer which works by inhibiting the growth of cancer cells.  

This is an extract from the cancerbackup website which explains how it works:

Proteosomes are a group of enzymes found in all cells in the body. They have an important role in controlling cell function and growth. By interfering with how proteosomes work, Velcade may cause cancer cells to die and may stop the cancer from growing. Cancer cells are more sensitive to the effects of Velcade than normal cells.

Up to now, Velcade has been mainly used to treat myeloma - a cancer which affects the bone marrow's ability to produce normal white and red blood cells and blood platelets.  Due to its success in targeting myeloma cells, researchers are looking at how effective it is when used to treat other types of cancer - which is where Steve comes in...

Like all drugs, Velcade has side effects.  However, it seems to us that taking a drug which specifically targets cancer cells in this way is worth a shot.  So that's the plan.  

We've yet to see the treatment programme, but when that's available we hope to be in a position to sort out our social/travel/ activity arrangements around it.  Will keep you posted!