nightmares and day dreams

We had arranged to go Bristol yesterday to see Steve's mother because of ongoing concerns about her health.  But instead of meeting the GP at her house as planned, we visited her in hospital where she has been since Sunday evening when she taken into A&E by ambulance, following a dizzy spell.

The journey from Oxford to Bristol was a bit of a nightmare, traveling through thunder and lightning, aquaplaning along roads which were at times like rivers, with extremely poor visibility due to the torrential rain, spray off the highway surface and low light levels...

Our relief at arriving safely was short-lived; the nightmare of finding a parking space at the hospital was closely followed by the nightmare of finding the patient, who been moved to another ward in a different building shortly before our arrival....

We had some idea of what to expect from other members of the family who had visited before us.  Nevertheless, the stark difference between the person we had talked to last Friday and the person we found lying in the hospital bed when we arrived was very upsetting. However, she is safe now and in good hands.  In that respect, it is less worrying than when she was home alone, determined to stay independent. However, it is likely to be some weeks before she is in a condition for her needs to be assessed.  By then, Steve will have started chemotherapy. Talk about bad timing......

Whilst in Bristol for the hospital visit, we took were able to meet up afterwards with son Jack and go out for a meal. A good opportunity to talk face-to-face about those sensitive things which are difficult to say over the phone or in an e-mail.  The experience of dealing with Steve's mum's sudden and rapidly deterioration in health has brought home to us that we really do need to have arrangements in place with our children should such eventualities befall us.  Time to get ourselves properly organised!

Still, it hasn't been all nightmares. The garden maintenance people came on Tuesday and it went like a dream.  Rob and his mate did a brilliant job, very quickly, cleanly and efficiently - such a relief!  They even trimmed the front hedge as a little surprise extra for free - isn't that kind?  

One other unexpected thing happened yesterday.  A letter arrived from the Cancer Centre with an appointment for Steve to attend the Chest Clinic in October. We weren't expecting such an appointment.  The date doesn't fit in with Steve's three monthly assessments, his three weekly chemo appointments, or the anticipated scan dates.  He has arranged to have his "bloods" done at the GP surgery a few days before each chemo session, so it can't be for that...We are at a loss to figure out the reason, unless someone at the Patient Contact Centre has been day dreaming at work, and made the appointment by mistake!  Must remember to phone the hospital tomorrow and find out what's going on....

Happy 14th birthday Google!  Thank you for the daily e-mail alerts for mesothelioma and for tracking down all the information we have found online about Steve's condition. Don't know what we would have done without you these last three years :-)

Mesothelioma Awareness Day

Today is Mesothelioma Awareness Day.....I usually write too much, so today I'm using images to raise awareness :-)

Find out about the risks associated with asbestos

Be aware

Take action

Fight with the Meso Warriors!

ups and downs...

Saturday, we were up..a day out in London for me looking around buildings not normally open to the public as part of the Open House event, blue skies and sunshine. Steve took a later train from Oxford and joined me at Tate Modern where we met up with our friend Sarah for drinks and food and a good old natter. Excellent company as always :-)

Sunday, we were down. Steve's elderly mum in Bristol hit the panic button again and it was a real emergency this time.  The wonderful grandchildren went to her rescue, called the emergency services and went with her to A&E where she has been kept in overnight for observation and tests.  She's still there....

Today, we've been up and down - celebrating the good news that Mavis, a fellow meso warrior, has been told her condition is still stable, but feeling so sad to hear news from other meso warriors, Jan and Lou, that things are not so good.  Such a roller coaster of emotions....

In the meantime life goes on.  We had our flu jabs this afternoon to reduce the risk of Steve catching something nasty when his immune system is compromised by chemo; the man is coming tomorrow to tame the jungle that has taken over our garden so that the builders can reach the roof and do the repairs to stop the leaks that are getting worse; Bristol on Wednesday to meet up with mum-in-law's doctor who is scheduled to do a home visit...but will she be home by then?  

Strangely, now we are in the run up to the start of chemo, Steve has been experiencing phantom side effects - occasional flatulence and burps (actually nothing new!); fatigue (probably due to a very late night on Saturday and all the stress of his mum going into hospital); "chemo" brain, when you can't concentrate or focus (not surprising given what's happened recently).  He knows it's psychosomatic, but it's almost like he's preparing himself mentally for what he expects will happen. He's also started to tell me when he feels a bit breathless.  Before he knew he was having chemo, he would say "I'm fine" if I mentioned that he seemed a bit puffed.  I will have to think of some way of nudging him psychologically when he goes into "patient mode" mindset and back into fighting back mode, where he is in control.  Any suggestions?

We have a date!

We have a date....In fact we have lots of dates!  The empty calendar for the second part of September into October is beginning to fill up....

A few phone calls and e-mails to the Cancer Centre and the GP about Steve's "first line" chemo treatment, and we now have a start date: Monday 8 October, and thereafter every three weeks for six cycles, provided his bloods are OK, he doesn't have a bad reaction to the chemotherapy and the disease does not progress in the meantime. That's two lots of appointments to pencil in on the calender over the next five months or so, plus scan dates during treatment as and when they are known.

Bloods will be taken at the GP surgery on the Friday before each new cycle starts, and the results sent electronically to the Cancer Centre.  Before we leave home on the morning of the chemo session, we are to telephone the hospital to check that all is OK for treatment to take place. Good thinking!  

Steve must also get into the habit of taking the folic acid tablets daily from now on, steroids for three days (I think) around the start of each chemo cycle beginning the day before the chemo is due to be given, and have vitamin B12 injections every nine weeks or so to counteract the side effects of Alimta.  

The flu vaccine has arrived earlier than expected at the GP surgery, so our jabs have been brought forward to Monday. That will help boost Steve's immune system before the flu season starts.  However, when treatment starts we must still try to avoid contact with anyone who is infectious, as the immune system is seriously compromised by chemotherapy. Please bear that in mind, if you are coming to visit!

We have already enjoyed one social date since the last assessment - a meal out with our friends Ian and Ruth before they head back to Jakarta and with Richard, visiting from France, which made up for missing him while we were on holiday in Carcassonne.  This weekend promises to be busy - but more of that in another blog!  Then there's that hot air balloon flight still waiting for us....

Work on the house and garden front is progressing, with quotes received and dates given for the climbing plants to be pruned back which will allow the builders access to the roof and gutters.  All being well, the leaks will be fixed and the house be watertight before chemo starts.  

The Mesothelioma Patients and Carers Day in London is also on the calendar, but its the weekend before Steve's chemo is due to begin, so we may feel like doing family visits then....On the other hand, it would be great to see the meso warriors in the flesh again and hear the speakers, especially Jan who will be talking about her mesothelioma journey and inspiring others who are following in her footsteps.  

  

action stations and a lovely surprise!

The upside of almost three years without treatment is that we've been off enjoying ourselves, making the most of life! The downside of so much galavanting, is that the garden has run wild and the climbing plants have grown up and over the roof - far too high for us to cut back safely on our little ladder.  In addition, little house maintenance problems have been ignored.  As for painting and decorating.....Well, don't ask!  

Steve's decision last week to whack Leo with another course of chemo has at long last galvanized us into action on the home front.  We have finally contacted roofers and garden maintenance people to give us estimates to prune back the climbing plants, replace slipped and missing slates, sort out the damp problems along the gutters and associated works to make the house watertight again.  

Yesterday, the front door bell was ringing on and off all the day with builders, roofers and garden people coming round to have a look and give us estimates. So many, that I was beginning to loose track of which person represented which business....but at least we are moving forward!  

The doorbell went again this morning when I wasn't expecting it.  Oh no, I thought, it's another builder come to give us a quote that I must have forgotten all about....But it wasn't a builder. Or a garden maintenance person.  It was the postman, with a big smile on his face.  "Linda and Steve Wride?" he asked and when I nodded he hand over a large box.

Intrigued, we brought it inside and opened it to find a BEAUTIFUL bouquet of flowers - and two lots of delicious chocolates!  The message on the card inside read:  

"Dear Linda and Steve, sending this with lots of love and strength from all the warriors around the world, xxxxx"

I don't mind admitting, there was a lump in my throat and tears streamed down my face when I read that. The eyes are watering again now, as I write.  You wonderful, caring, thoughtful people.  You know who you are!  Thank you all so much.  You certainly know how to cheer people up :-)  We are very, very touched.  And a special thank you to the Meso Warrior(s) who organised it.  You were too modest to add a name to the card, but I am thinking about the usual suspects and sending you big hugs :-)

The gift could not have come at a better time.  We needed a bit of cheering up.  Steve has been feeling vulnerable - suddenly it's all real again, like we've been living in a wonderful dream for the last couple of years, which we now have to wake up from. 

I have been looking back through the blog to remind myself how Steve managed six cycles of chemo back in 2009.  I wouldn't say I had forgotten those times, but they came back vividly as I read the blog, and the thought of going through that again is not one to fill you with joy...The memory clearly plays tricks with the passage of time, highlighting the good memories of days out and get togethers with friends, and drawing a veil over the more difficult times, when the side effects of chemotherapy at their strongest.  However, it was also reassuring to remember that he did get through it, and enjoyed good times in between the fatigue and nausea.  

I've also been re-reading other Meso Warriors blogs, including Debbie in Plymouth who will be having her last cycle of Alimta and carboplatin (the same combination as Steve) next week.  Although she has had bad days, she bounces back - an inspiration to us all!  Not forgetting other bloggers Mavis (and Ray), Jan and her hubby, Amanda and Ray, Tess and Alan, all of whom are fighting this disease through good times and bad, and sharing their experiences to inspire and help others. 

The international Meso community on Facebook are a huge source of help, support and advice.  Even though few of us have met face-to-face, the warmth that comes through personal messages (thinking of you in Oz, Ria!) as well as in group postings is second to none.  

So - here we are again....Well, nearly. 

Steve had his Vitamin B12 injection at the GP surgery yesterday, but the practice had yet to receive the fax from the hospital giving details of Steve's treatment which should have been sent after the assessment meeting last Thursday.  
As a result, the practice nurse didn't know when Steve's treatment is due to start and consequently couldn't sort out a course of injections at this stage. Without having a treatment start date, Steve doesn't know when to begin taking the steroid and folic acid tablets, which he collected later that day from the local chemist. Two phone calls to the hospital today and leaving messages with the consultant's secretary has yet to yield any answers.  I begin to wonder whether Steve is actually "in the system"!  We'll try again tomorrow....

In the meantime, there are enjoyable things to look forward to, before it's keep calm and take the chemo time!

a thank you, an apology and a correction

Firstly, thank you.  Thank you , thank you, thank you to everyone for their love, good wishes and support since the last blog.  It feels like we've been swept along by a tidal wave of support and positivity.  We really do appreciate it!

Secondly, an apology.  I'm sorry if I gave you the impression that Steve's condition has taken a sudden and dramatic turn for the worse.  It hasn't.  He still feels good and, to all intents and purpose, is asymptomatic - no pain or breathlessness in the normal course of events.  There is no discernible difference between how he felt physically before the news of the scan results on 13 September and how he feels now. He is dealing with the psychological impact of the news, which he describes as feeling "more vulnerable" since the medical team recommended having more chemo.  However, that's not surprising, regardless of much you have prepared yourself for such an event.

We are also trying to prepare ourselves mentally and emotionally for the side effects of chemotherapy, once it begins.  However, that's a few weeks off yet and we are using the interim period quite literally to put our house in order, and well as hoping to make the most of opportunities for being sociable over the next few weeks - more of those activities in a future blog!

Thirdly - a correction.  Steve has just pointed out to me that he will shortly be starting "first line" chemo, not second line treatment which is what I have called it when spreading the news.  Thinking he must be wrong (after all, he had one chemo regime back in 2009) I did what many of us do these days and googled it.  He's right!  (surprise, surprise :-)

First line chemotherapy is chemo that has, through research and clinical trials, been determined to have the best probability of treating a given cancer.  In the case of chemotherapy for mesothelioma, that's pemetrexed (Alimta) in combination with a platinum-based drug, such as cisplatin, or carboplatin.  This is the regime that Steve will start in a few weeks time.  It seems that drug trials don't count as "first line" chemo, even if that's the first treatment you receive.  So....Steve will start FIRST LINE chemo sometime in October, and I am now only only older, but just a little bit wiser!

We are now in the rather surreal position of getting ready for further treatment whilst Steve still feels good. I confess, it's a bit scary - we know that treatment will inevitably impact on our lives over the next five months or so, but to what extent remains to be seen.  However, the upside of the decision is that after a reprieve of almost three years, Steve feels it's the right time to take action to combat the disease and put Leo back in his place.  We are up for the fight!

Time to fight back

Assessment day today and it was not the news we were hoping for, although it was the news we have been expecting for some time now.  

Steve's August CT scan confirmed some disease progression since his last scan in December 2009, at the end of the Velcade drug trial.  The good news is that the mesothelioma is still confined just to the right lung and there is no sign of metastasis elsewhere.  However, the pleural thickening in the affected lung has increased in depth and is more widespread, and the meso has now started to grow into the chest wall, on his right side.  The doctor was surprised he hasn't had any pain as a result of the chest wall meso, but thinks this might be due to the very slow, gradual rate of growth of the cancer.

There was some discussion about the pros and cons of having chemotherapy, with the all attendant side effects and inherent risks, while Steve is still feeling good and able to enjoy a good quality of life.  However, whilst he is pain-free at present, that's likely to change if the cancer continues to grow, especially into the chest wall.  I think that factor was the determining factor in reaching a decision that the time has come to attack the cancer again. 

So we are off on the chemotherapy merry-go-round in about three weeks time; a combination of pemetrexed (Alimta) and carboplatin (rather than cisplatin, at our request).  This will be given as a hospital day patient once every three weeks, along with steroids, vitamin B12 injections and folic acid tablets (by the GP practice nurse) to counteract the side effects of the pemetrexed.  Hopefully, another six cycles of chemo will stop the mesothelioma in its tracks or, even better, whack Leo back a bit so that Steve can continue to enjoy life without symptoms for even longer.

Steve will get his first dose of vitamin B12 and associated meds next Monday afternoon, so that they will be in his system for a couple of weeks before chemo starts. Our flu jabs have been booked in for 29 September, to reduce the risk of catching something nasty while his immune system is compromised by the chemo.  Just waiting for the appointment for the first cycle now and then we can start pencilling in future sessions on the calendar to work round over the next five months or so, assuming he has the full six cycles of treatment.  

When Steve was on the Velcade drug trial in 2009, we had to go to the hospital twice a week for two weeks for chemo, then every other third week for a scan.  It felt like we lived there!  At least this time round, Steve will have two clear weeks between sessions to relax, recover and hopefully enjoy a bit of "normal" life.  Plus the side effects of carboplatin are known to be generally less severe than those associated with cisplatin.  

Even so, we know it won't be easy, but at least we have a better idea of what to expect this time around and how to manage the side effects and other limitations of chemotherapy.  And if the chemo does its job, we will have something extra special to celebrate in 2013 (and an excuse to enjoy a second Christmas/New Year when the side effects of the drugs have worn off :-)

Although we have been dreading this news, now that it has happened we have switched into action mode and somehow feel calm and focussed on the fight ahead. The energy we have been putting into galavanting around europe and the UK over the last couple of recent years will now be directed into fighting back.  We will be following in the footsteps of other meso warriors and their partners and we know that they will be there for us when we need them, along with our family and friends, who have given us such great support since June 2009.  

Love you all xxx

A month of two halves

As we were away at the start of the month, I have only recently turned over the calendar to the September page. The beginning of the month is full:

1 September      
Fly to Bezier, travel on to Carcassonne
2-7 September   
Carcassonne
8 September     
Carcassonne, Bezier, home
9 September      
Unpack/sort out/catch up
10 September    
Osteopath appointment + frame and deliver print for next month's exhibition
11 September    
Day out at Tate Britain London with friends Jan and Peter to see the "Pre-Raphaelites" painting and "Another London" photography exhibitions and catch up on news over coffee, lunch and a bottle of Prosecco to round off the end of a lovely day
13 September
Steve's hospital assessment

After that, the calendar for the rest of September is empty. What happens in the second half of the month will depend on the outcome of Steve's assessment.  There are a few things pencilled in to my diary, but plans will not be firmed up until after tomorrow. That's the way it goes now.

Today is also blank on the calendar. That's the way I am trying to keep my mind. If I engage brain, inevitably I start thinking about tomorrow.  I can see us sitting in the consulting room, waiting for the oncologist to appear, hands getting clammy and that awful feeling in the pit of the stomach growing as each minute passes, waiting to hear the news....Not a very positive attitude, I'm afraid.

I must try to take a leaf out of Steve's book.  He seems to be upbeat.  Reminds me that he has no pain; says he is no more breathless now than he has been in the past, and attributes getting a bit puffed from time to time to mild asthma triggered by natural and environmental factors.  He also points out that I cough more than he does!  

Must also remember that as well as being Steve's assessment, 13 September is our son's birthday. Here's hoping that the assessment news will be a good birthday present for Jack!

Carcassonne interlude - some random thoughts on holidays

Pre-children, the shape of our year was dominated by the pattern of working life, with holidays fitted in around committee cycles and work on the house and garden.  When we became a family, life revolved around the academic year with active short breaks in the UK in the half term holidays and a fortnight flopping somewhere in the sun, combined with a bit of sightseeing and exploration, during the long vacation.  

Variations on that pattern lasted until both children had flown the nest and I no longer worked full time. Then, in 2009, it was our turn to take a "gap year" and go traveling. It was while we were visiting Italy for the first time that year that Steve became ill, was subsequently diagnosed with mesothelioma back in the UK and "normal" life came to an abrupt end.

However, as time passed, we began to adapt to living on a three monthly time frame between hospital assessments and started traveling again, both in the UK and abroad. These days however, our "holidays" are shorter - anything from a few days up to a week long - but we go away more frequently. While we are traveling, we tend to pack in as much as we can, not knowing if or when we will ever return. As a result, we usually come back from these trips exhilarated but exhausted, with memory cards full of photographs to process. 

We have just returned from a week based in Carcassonne, south west France, and this time it's been a very different experience - we are rested, relaxed and recharged!  We spent a few days in Carcassonne this time last year while touring the wider area, so this trip was more like going back to see an old friend. We enjoyed introducing the walled Cite and the castle to our daughter Katie and her partner Ed, as well as being chauffeured around the surrounding area, including the Canal du Midi, some of the local villages and vineyards, and the Lac de la Cavayere, all new to us. 

We caught the end of the Carcassonne Feria, where everyone gathered in one of the main squares to enjoy an evening of food and drink, music and a bit of dancing - a reminder of how close we were to Spain.  

We sampled some lovely places to eat out in Carcassonne, but it was also a pleasure to eat in at the villa we had rented for the week, especially when Katie and Ed prepared meals using lots of lovely local ingredients!

One of the biggest differences however on this holiday, was simply taking the opportunity to relax, unwind, sit in the sun, take a dip in the pool, read a book, sleep in late in the morning and linger over a meal on the terrace, enjoying good company and conversation until late into the evening - luxuries we rarely indulge in when we travel alone.  "Makes a pleasant change to chasing round after you" as Steve noted wryly one evening :-)  

What better way to take our minds of Steve's next assessment, now only a few days away, when we will find out the results of the CT scan taken at the end of August.  It was noticeable on this holiday that there were occasions when Steve became a bit puffed when walking. He attributes this to the heat which built up during the week we were there, and the very hazy atmosphere on one particular day which might have been caused atmospheric pollution.  I am just hoping he is right, and it's not Leo rearing his ugly head after sleeping peacefully for three years and three months. We shall find out soon enough.

Before then, we have a day out in London with friends to look forward to, as well as lots of holiday washing and travel paraphernalia to put away, e-mails to answer and news to catch up with.  Not to mention some photos to process - yes we did take a few!