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!

Roller Coaster

On the radio this morning, someone said "If you are always happy, how will you know when you're not?"  Yesterday was one of those times when we knew we were not.  

It should have been a good day - bright sunshine, blue sky and an almost spontaneous decision to go to the Royal Academy Summer Exhibition in London. Although it started well, Steve had a coughing fit on the underground probably triggered by being up close to someone wearing perfume or carrying something on their clothes which his lungs didn't like.  Same again walking along Piccadilly, which was heavily congested.  It really brought home to us how difficult it must be to live with asthma all the time.  Frustrating search for chairs/table at lunchtime - why do people hang about for so long after they have finished their meals, when they can see others clutching a tray of food desperately looking for somewhere to sit down and eat?

To avoid a long wait at Paddington, we caught the stopping train home.  Not a good idea without a good book or newspaper - too may opportunities for gloomy thoughts to creep into the mind, without any such distractions.  By the time we got home, both of us felt rather tired and emotional.  To makes matters worse, there was no letter or message on the answerphone from the hospital with appointment dates for treatment, without which our plans to do nice things are still on hold - we're back in limbo again.  

Steve said he felt he was slipping out of "fighting back" into "resignation" mode.  I found myself thinking "This is as good as it gets - things won't get better, it can only go downhill - what is there to look forward to?"  Martin, if you read this, you'll understand why I didn't feel much like chatting when you rang.  I'm so sorry.  We really do appreciate and need our friends to be there for us.  Thanks for getting in touch - we'll talk again soon, when the emotional roller coaster goes back up.

Thanks also to all out other friends who have sent messages of love, support and best wishes.  It really really does help - even though it feels a bit overwhelming to be on the receiving end of so much goodwill and positive thinking.  

And of course, as you would expect, thing's don't look nearly so bad this morning. Although we're not on our way to Turkey as hoped, the sun has come to us instead.  The travel insurance company has got back to us and the GP is happy to complete the medical declaration.  All being well, we'll recover the cost of canceling the holiday.  

Ruth, the "haven" in Vietnam sounds very inviting - perhaps when we know more about the timing of Steve's treatment programme, we'll be able to arrange a visit, just one of MANY things to look forward to - how wrong I was yesterday.

We hope to see some of you at Edith's retirement celebration tomorrow, others at Ludo's 60th birthday party and yet more at Roger and Stella's lunch in the garden later in July.  We'll pick up on invitations to see other friends (and Sue's chickens) just as soon as we have hospital dates to work around.  

The sun is still shining.  Murray hasn't been knocked out of Wimbledon.  Although not in the eastern Med as planned, I am still "on holiday" from work and Steve is back to "normal" after yesterday's blip.  Time to get on and enjoy life again.

The action plan takes shape

Back from today's visits to the hospital - both of us feeling more positive as the action plan to treat Steve's mesothelioma begins to take shape.  

The good news is that his right lung remains clear of fluid, so the pleural effusion was effective.  

We saw the CT scan and faced the uninvited guest.  Not quite what we expected - there is no tumour/lump as such.  However, the thickening of the lung lining can be seen in places on the right side - more like layers/sheets than a single ball-like mass.  

Phase 1 of the plan is to zap the "ports' where the chest drain and camera were inserted with high intensity radio waves - this has proved to be very effective at preventing the cancer cells spreading into these vulnerable areas.  Side effects are few (possible tiredness, occasional nausea; the skin in the area can become red and itchy, but nothing that can't be dealt with by a dollop of aqueous cream - and long term change of skin colour, but not in a place where it's noticeable when dressed).  The treatment involves four hospital visits - one to target the area precisely and three to do the zapping - every few days as an out-patient. Should get an appointment for the course of treatment in the next few days.

Phase 2 of the plan is to start chemotherapy when the course of radiotherapy has been completed.  Steve has been offered the opportunity to take part in a clinical trial of a drug which has proved successful at managing other cancers, to see whether it works as effectively on mesothelioma. We are going to be sent more information on that option, but our initial reaction is that's it's worth a go.  If it proves not to be effective, he can go on to the more usual treatment - a combination of two drugs (pemetrexted/Alimta and cisplatin) with supplements of vitamin B12 and folic acid. This is is usually given in six 21-day cycles (1 day treatment, 20 days rest) over a period of five months.  There are various side effects and risks, but the evidence suggests that these are outweighed by the benefits in terms of quality of life after the course of treatment

Ongoing monitoring on a regular basis (every few months) with chest X rays to see what effect the therapy is having.

Alternatives - there are several other non-traditional options which we can explore if the standard approach doesn't work for him.

Prognosis is uncertain - the honest answer is that nobody knows.  Survival rate statistics are skewed by an enormous number of variables - so shouldn't be applied crudely to individuals.  

The important thing is that Steve is being actively treated.  We are learning to LIVE with Leo the cancer, not thinking in terms of him dying because of it. 

PETAL (see earlier post) is a good philosophy to live by under any circumstances, so help us to be positive by treating Steve as a normal human being (I know it's hard - he can be a bit of a pain at times!) rather than someone with a terminal illness.  

Future plans - Please come and see us (but check first in case we're off galavanting somewhere!). Only stay away if you have a nasty cough/cold/infection - it's easier to deal with one illness at a time!  Don't feel awkward, or be worried about what to say - a big hug and kiss is enough to show us you care, then carry on as normal.  Invite us to your parties and celebrations - we promise not to bring everyone down.  Don't be alarmed if we suggest visiting you - mesothelioma is not catching.  Steve doesn't look like Dracula (just his normal handsome self) so he won't frighten the children or pets.  Being human, there are bound to be times when we find things a bit difficult in spite of cultivating a positive mental attitude, so bear with us if/when that happens - we will bounce back again, especially with the help and support of family and friends.  

Steve is working on his goals/targets/to do list - more of that some time in the future.  

Monday, Monday

The weekend is over.  Both our children and Steve's mum now know the diagnosis.  

Steve's mum (who's in her 80s) said that she would "go" before him, mesothelioma or not.  Our son was at pains to point out that we shouldn't take too much notice of life expectancy statistics - too many variables with a disease like mesothelioma to be be reliable.  Our daughter was more subdued and we had more hugs than usual.  But apart from that, it's been a "normal" weekend - meals, shopping, a walk, some housework and gardening.  Life really does go on.  

Today is a bit different, however.  It will be the first trip back to hospital post-diagnosis.  This morning Steve is due to meet his radiotherapy doctor to discuss zapping  the "ports" where the chest drain and camera were inserted with high intensity radio waves.  Apparently this minimizes the risk of cancer spreading to that area.  

This afternoon, we are due to meet the oncologist to discuss prognosis and treatment.  We are both feeling very apprehensive about this, Steve in particular.  But we have a list of questions and things we want to talk about, and are going armed with information about treatments which others in Steve's position have found beneficial.  Many thanks Debbie, for telling us about chemoembolization and the Park Attwood Clinic, and to Sarah for telling us about the mesothelioma centre of excellence at Leicester Uni.

When we have a better idea of what stage the cancer has reached and the treatment plan proposed , we'll tell others what's happened - hopefully with some positive news about how the tumor can be slowed down/managed, along with the bad news.  

Steve has called his tumor Leo.  It's a way of externalizing the uninvited guest in his body, whilst acknowledging that it is there and will have to be dealt with.  Leo - you'd better behave yourself.....

PETAL

Graham Sherlock Brown's philosophy for living with mesothelioma - sounds good to me!

P = Positive attitude

E = Eating and excercising well

T =Targets

A = Adapting to change

L = Living your life

Blast from the past

On the radio this morning, a blast from the past - Jefferson Airplane singing "Crown of Creation".  

The last line still resonates:

My life is to survive

and be alive

for you

How does it feel?

How does it feel to find out that the love of your life has a terminal illness?

Unreal - especially when he appears absolutely "normal".

Devastated - dreams, plans and expectations come crashing down around you, as soon as you hear the word mesothelioma

Frightened - What will happen? Will you be able to cope? Be supportive? Be positive for him?

Helpless and out of control - this thing has arrived uninvited in your partner's body and bit by bit, sooner or later, will kill him

Physically sick with worry and anxiety

Angry - what have either have you done to deserve this? Why him? Why now? Why? Why?

Overwhelmed by the enormity of it all - your lives have been turned upside down and inside out and everything goes into slow motion - you can't see more than a day ahead

Most of all I think, scared of the pain he will suffer/might suffer, how he will deal with the onset of debilitation, and how you will deal with these things too

Grief stricken - your life together will be snatched away - how long will you have ? Will he be there for his next birthday, or yours? Will he live to see your daughter finish university? Your son find a partner?

How do you tell someone that their dad, son, brother, friend, neighbour has an incurable cancer?

There are no easy answers.

But we have been overwhelmed by messages of love and support, positive thoughts and leads to information that might promise an extended period of quality time together from those who already know. Thank you all.

In about an hour, we will have to break the news to our daughter who returns home for the weekend, not knowing what awaits her. Still, better to tell her here, with us, than send a text or e-mail, our only other way to communicate with her in her far-flung hall of residence, without mobile reception. Tomorrow our son will join us and we will have some time together as a family before life goes on as usual. His mum will also hear tomorrow; Steve's brother has offered to break the news to her. We will see her soon, I hope, but when? I know not.

I must remember why I started this blog. I want to do something positive. When we hear the prognosis on Monday and can discuss the treatment plan, we will have some hooks on which to hang positive thoughts and actions. I hope to share them with you soon.

In the beginning

I'm not sure exactly when it started - having flu-type symptoms (cough, breathlessness, loss of appetite) did not seem significant at the time - apart from the fact that it put a bit of a damper on our anniversary trip to Italy, but not enough to stop Steve climbing to the top of the Duomo in Florence!

The doctor who saw him on his return home in May put it down to a "virus" and told him to come back in a fortnight if he still felt unwell.

On his second visit, a different doctor was concerned enough to send him for a chest X-ray. When he was then referred on to the assessment centre, we realized it was something more than flu. A CT scan revealed fluid on the lung (pleural effusion). He was told he would need a chest drain, and at the same as inserting the tube, they would use a small camera to look inside the pleural cavity (thoracoscopy), take a biopsy for testing, then squirt a sterile talc into the gap to help the pleura stick back together (pleurodesis).

To avoid clashing with various family and social events and work commitments, Steve asked for these procedures to be postponed until after we returned from our main holiday, in early July. When the appointment was brought forward instead, we suspected that he might have something more serious than we had imagined. Didn't feel in the mood for socializing so missed Andy's leaving drinks and Sue's 60th birthday party. We'll catch up with you guys at some point, promise.

Steve was in hospital for four days last week. The procedures were straightforward, and went off without a hitch. The first night he was in considerable pain and discomfort from the chest drain - not helped by long wait for a porter, followed by a marathon trip in a wheelchair to transfer him to the ward via X-Ray, only to find that his bed had been taken and he had to sit in the day room, feeling faint and sick until another bed became available. Things improved after that, thanks to great staff (thank you Angel and the rest) and morphine (although the side effects were less comfortable - if I mention senna you'll get the picture).

It was a relief to have him home on Thursday evening (thanks to Sally for being a sensitive chauffeur) - the house had seemed very empty without him, likewise the bed. I kept waking up wondering where he was...

Steve returned to hospital on Tuesday to have the stitches in his side removed and hear the diagnosis. By a cruel twist of fate, I had to be in London for work-related reasons that same day - too short notice to postpone and not possible to delegate - so he heard the news that he had mesothelioma whilst on his own, with no one there to support him. I feel SO bad and guilty not to have been with him. I heard from Steve on the train journey home. The text just said "Talk about it later", so I guessed it wasn't good news and phoned at once. Although I was expecting bad news, when he said it was mesothelioma I could hardly believe my ears. I still can't.

Unlike his dad, who died of mesothelioma coming up to 20 years ago, Steve had never worked in ship-building, or boiler-making like his granddad - heavy industries where so many unsuspecting people were exposed to large amounts of asbestos which has left the mesothelioma time bomb ticking. His dad had left Charlie Hill's in Bristol before he was born, so he couldn't have breathed in fibres from work clothes. However, Steve's work in various architects' offices in the late 60s early 70s involved visiting buildings and sites where asbestos was being used, so that might be the source.

Anyway, that's how it all began. In the space of a few short weeks our lives have been turned upside down and inside out. If you want to know how that feels, I'll try to put it into words sometime soon.