Transfusion day: Chemo 6, Day 2

Although Steve had blood transfusion after chemo cycle 5, his haemoglobin level had dropped again by the start of chemo cycle 6 on Tuesday.  In fact, it had dropped back to the same low level as before, so evidently the benefits of the last blood transfusion were short lived.  

Looking back, it's interesting to see how the haemoglobin level has changed over the course of this regime, compared to the "normal" range of 13-18 cells per microlitre.  Here are the observations taken at the start of each cycle:

• Cycle 1 - 15.6
• Cycle 2 - 12.9
• Cycle 3 - 11.2
• Cycle 4 - 8.9 
• Cycle 5 - 8.5 followed by blood transfusion 2 units
• Cycle 6 - 8.5 followed by blood transfusion 3 units

Yesterday was Steve's second blood transfusion in this chemo regime. We knew it was going to be a long day, so went prepared mentally as well as practically, with books, newspapers, pens, notepads, a travel magazine (tempted to look ahead a little now we are in the last cycle of treatment) plus a cushion for comfort/back support for me as the visitors chairs offer little of either.  

We arrived on time at the chemo suite after what was, for us, an early start.  However, over an hour passed before Steve was hooked up, ready for his first bag of blood.  But we did discover something new during the wait.  Lurking around the corner from the bays where we usually sit and hidden out of sight, was a stack of personal DVD players with headphones and a DVD library.  The nurse was surprised no one had pointed us to it before!  So we were able to add a couple of films and a TV series to the array of things we could look at to pass the time.

The first unit of blood was delivered via a drip feed that took a horribly long time - 2 hours 45 minutes to be exact - and didn't finish until 12.30 pm.  Had things carried on like that, we would have still been there at six o'clock in the evening, after the chemo suite had closed!    

As a result, the second and third bags of blood were pumped through and only took two hours each to be transfused.  We said our goodbyes to the chemo suite before 5 o'clock and then faced an hour long journey home crawling through Oxford's peak hour traffic.  

In theory, we should have been celebrating last night - no more planned trips to the chemo suite in the foreseeable future.  In practice however, we both felt exhausted and took an early night, myself only a little later than Steve.  

The weekly food shop this morning has knocked Steve out and he's doing his impression of Sleeping Beauty again as I write.  If he manages anything more than eating, sleeping and taking his anti-sickness medicine over the next few days, I think that will be a bonus.  

However, all being well, he will perk up again next week as the side effects of the antiemetic medication wears off.  The side effects of the chemo itself will take longer to wear off, but he will get there in the end. 

Steve's follow up assessment is scheduled for 28 February. That's when we will find out the results of a scan (date to be confirmed) and what effect these six cycles of pemetrexed (Alimta) and carboplatin have had on Leo the Meso.

While we have been pre-occupied with hospital visits these last few days, the rest of the world has been very busy.  

The house where Steve's mum used to live has gone on the market, so we are keeping our fingers crossed for a swift and easy sale to fund her care home fees.  If anyone is looking to buy a three bed thirties semi with many original features, a large garden and a garage in Bristol, please get in touch!  

After an extended period of apparent inactivity, a large packet of documents arrived at home while we were in hospital yesterday - a sign that daughter Katie's flat purchase in London is moving forward at long last.  Whether the sale will be completed before the lease on their current flat expires remains to be seen.  Nail-biting stuff.....

Son Jack's travel plans for spring have taken a big step forward; we look forward to seeing him here around Steve's birthday before waving him off shortly after.

Fellow meso blogger Mavis and my namesake Linda (Reinstein), president, co-founder and CEO of the Asbestos Disease Awareness Organization (ADAO) were both honoured with awards by the Independent Asbestos Training Providers (IAPT) for their stirling work raising awareness of the risks associated with asbestos, both in the UK and globally.  

Mavis (left) and Linda (right) 

Meso warrior Debbie in Plymouth has been invited to speak at a very special event in London in the summer, but you will have to wait to find out more about that....

I now have a backlog of photographs to look at in the Best Shots photographic competition, which I am helping to judge.  If you fancy yourself as a photographer (or even if you don't!) you might like to support this charity fundraising event.  Just follow this link...Time for me to sign in and catch up, while Steve is still sleeping!  

Chemo 6 begins.....but not without frustrations

There are times when things go smoothly like clockwork and there are times when they don't.  We're in a non-clockwork time zone at the moment...

...The frustrations started yesterday, when I tried to share the day's blog on Facebook.  The Facebook website wouldn't load.  I put it down to a busy server, and thought no more about it, although I was surprised to find the same problem when I checked before going to bed and again this morning.

....More frustrations at the hospital today.....

Steve's appointment had been pushed back from 9.30 until 12 noon as a result of not being cleared for treatment until late yesterday, after the order for this morning's chemo drugs had been made. This meant his chemo would not be ready until noon at the earliest.

We planned to arrive at the chemo suite around 11 am to get his supply of Emend anti-sickness drug which has to be taken an hour before chemo is due to begin. However, we set off later than planned, having wasted time trying to sort out my Facebook access problems, to no avail. I ended up sharing yesterday's blog update via Steve's Facebook page, which was working fine.

By the time we arrived at the hospital, there was a long queue of cars waiting to get in to car parks 1 and 2, so we headed straight for car park 3, only to find an even longer queue.  So long, in fact, that it blocked the road leading to car park 4. 

With time passing and no sign of the queue of traffic moving, we did a U-turn and headed off to another hospital in the same complex to see if there were any parking spaces available in that area. No luck there either, so out of the hospital complex to search for somewhere to park on street - again, in vain.  

Back into the hospital complex and on to car park 5 this time, via a different route.  Only two cars in line at the entrance, so we got in the queue and waited.  It was a long wait.  Even when we reached the front of the queue and used the "chemo" parking ticket, the barrier would not go up.  We waited for a vehicle to exit hoping this would allow us in, but the ticket still wouldn't work. 

By this time, quite a few more cars were waiting behind us, so we couldn't go forwards or backwards. Steve pressed the call button on the entry machine, and explained the problem.  At last the barrier lifted and we found an unofficial nook where we could leave the car and head off to the chemo suite, arriving just before noon.  So much for getting there early!  

Although Steve chemo drugs had arrived, he was unable to start treatment until the pharmacist arrived with the Emend anti-sickness pills - so another 15 minute wait before anything could happen....

Emend pill safely inside, the chemo nurse arrived to take Steve's bloods to cross match for another transfusion.  To our surprise, he's going to be given three units of blood next time as his haemoglobin level has dropped to 8 (below what it was before the last transfusion three weeks ago).  

The nurse inserted the cannula for chemo, hoping she could use this to take Steve's blood sample for cross matching. However, even after three attempts she couldn't get enough for a cross match....so off to get the standard blood sample needle and then try again in the other arm this time. Success at last!

An hour later and the pemetrexed chemo started bang on time.  As usual, there was a delay between finishing one chemo drug and starting another, in this case carboplatin. However, that chemo had finished by 2.45 pm and we had high hopes of leaving the hospital shortly after.  

In the event, it was 3.25 pm before we left the chemo suite, after more waiting to be unhooked, have the "Red Book" filled in and get details of tomorrow's transfusion appointment.  As it's three units of fresh blood this time, it will be an early start ....in hospital at 8.30 am.  If we are out by 5 pm, we will count ourselves lucky!  

Not looking forward to it, I have to confess.  I imagine Steve will sleep quite a lot of the time. I may have to take myself off for a walk - sitting for 8 hours without a break numbs the mind and other parts of the anatomy, even with several good books!  Still, if last time is anything to go by, Steve will feel much better afterwards.

And I must keep reminding myself:  THIS IS THE LAST CYCLE OF CHEMO!  

Post script - Facebook problem seems to have sorted itself out, so all being well, I will be able to post this blog update myself :-) 

Ready.....Steady....GO!

The build up started on Friday, when Steve went to the GP's surgery for his vitamin B12 injection....

Yesterday, he started taking steroid anti-sickness tablets. 

Today, it was hospital to have his bloods tested, an X-ray taken and a session with the lead chemo nurse to discuss side effects during chemo cycle 5.

Late this afternoon, we had the call back - the bloods and X-ray are fine.  Haemoglobin levels have dropped back, so Steve will need another blood transfusion, but apart from that it's all systems go!

Tomorrow, we'll be back in hospital again for chemo session 6, the last in this chemotherapy regime of Alimta (pemetrexed) and carboplatin.  

In some ways, it seems like an age since this regime started last October.  In other ways, it's gone quite quickly. I can say however, that we are both glad that this will be the last session.  Steve looks forward to the side effects wearing off; taste buds going back to normal and being able to enjoy food again; energy levels going back up; his hair thickening up again - its noticeably thinned out over the last few months; no more runny nose or stinging eyes, which is what has been causing him problems recently...

It will be lovely to be able to look a little further ahead than three weeks at a time, especially now it feels like spring is just around the corner.  The last of the snow has been washed away by rain, the bluebells are appearing in the garden and the birds are singing loudly...  

We've still got the last 21 day cycle to go through - a blood transfusion, more anti-sickness medication and the side effects of the meds and chemo.  What will happen this time, I wonder?  Each cycle has been that bit different.....Then there's a scan in a few weeks time, and the clinic appointment to discuss the results with the doctor at the end of February. 

The results after four cycles were positive.  Here's hoping there will be more good news after two more cycles of treatment, just in time for Steve's birthday in early March. Now wouldn't that be the best birthday present ever?

   

Changing Plans: Chemo Cycle 5, week 3

Week three of Steve's 5th cycle of chemotherapy was going involve several mesothelioma-related meetings and appointments.  However, the snow which started falling last Friday, and has been falling on and off since then - including again now, as I write now - has caused our plans to change.

Inspired by fellow blogger Mavis, who is very involved in her local Cancer Network, I accepted an invitation to a meeting of the Patient and Carer Panel set up by Oxford University Hospitals Cancer Services. That meeting was due to take place on Monday, but has been cancelled because of the disruption to travel caused by snow.

Tuesday we had a call from Liz, the lead chemo nurse, saying there was a big backlog of appointments in the day clinic because of cancellations due to snow related travel problems.  She asked whether we would mind postponing Steve's appointment (scheduled for Friday) until next week, the day before Chemo 6 is due to start on Tuesday. Not a problem for us, so another change of plan.... 

Today, we were to attend the second meeting of the Thames Valley Mesothelioma Group, which had been set up late last year. The thought of trying to get the snow off the car for the journey to the venue (which is outside Oxford) didn't fill us with joy this morning.  With the snow falling again now, we've decided that the effort involved in de-snowing the car and the risk of traveling home in bad conditions if the snow continues to fall, just isn't worth it.  On this occasion, we will give the meeting a miss.  We can find out about the services offered and the facilities available at the Maggies Centre online, as and when necessary.

All over the UK, people's plans have been disrupted by the snow and freezing temperatures over the last week. Take care if you need to venture out for whatever reason and be prepared for the treacherous travel conditions!

So, here we are in the last week of chemo cycle 5, with few commitments and some unexpected time on our hands. Steve still has to have his vitamin B12 top up injection some time this week at the GP surgery.  However, Liz will do his bloods at the assessment on Monday, so no need to arrange that as well.  

Steve's had a bit of a sniffle in the last few days, but is otherwise feeling good, considering how much pemetrexed and carboplatin has been pumped into him since last October. The blood transfusion at the start of this cycle of treatment has boosted his energy no end.

With just one more cycle of treatment to go next week, we really can see the light at the end of the tunnel.  I had some concerns about how Steve would stand up to the last two rounds of chemo, but have been reassured by how well he's managed cycle 5 after the blip in the first week. Consequently, we not as apprehensive about the sixth and final cycle of treatment as we might have been, had circumstances been different.  

It seems that others find chemo cycle 4 the most difficult, then get a second wind to carry them through cycles 5 and 6 - thanks Amanda for sharing Ray's experience.

Onwards and upwards, as they say!  

Looking forward: hope on the horizon?

These days, we rarely look beyond the date of Steve's next three monthly assessment (or at present, his next treatment!).  However, there is one area where I am always keen to look forward to see if there is more hope on the horizon: research into treatments and possible cures for mesothelioma.

In the December 2012 issue of the Journal of Thoracic Oncology, mesothelioma expert Anne Tsao analyzed recent and upcoming directions in mesothelioma research.  She focussed on three main areas of development; anti-angiogenic drugs, immunotherapy and biomarkers.  This is what she has to say:

Anti-angiogenic agents

Anti-angiogenic agents are drugs that prevent tumors from creating new blood vessels (which allows the tumor to spread from its origin).  Researchers are finding great promise in these drugs for mesothelioma patients who meet a very specific set of characteristics. These trials have produced positive responses for sunitinib, bevacizumab/gemcitabine/platinum-based chemotherapy regimens, and the tumor-specific peptide known as NGR-hTNF.

Moving Forward

Researchers have already identified vorinostat as a potential treatment for mesothelioma. This lymphoma drug has produced median survival rates of up to four weeks longer than placebo drugs, but further developmental trials are currently on pause. Once researchers can provide further analysis on the biomarkers that indicate a positive response to vorinostat, they may be able to launch additional studies.

A clinical trial that is currently wrapping up at MD Anderson Cancer Center, USA. The study is one of the first efforts to incorporate pre- and post-treatment biopsies, personalized treatment plans and a novel targeted agent.

Immunotherapy

Many developments in immunotherapy focus on the use of tremelimumab. This human antibody is proving especially useful in patients who do not respond to traditional chemotherapy drugs.  In one study of 22 patients, tremelimumab produced two partial responses, stabilized four patients’ progression and yielded an overall survival of 17.5 months.

Moving forward

In light of the recently completed phase II immunotherapy studies, researchers hope to advance to the next stage in tremelimumab testing. If certain results are achieved, the drug may become an ideal “salvage therapy” for mesothelioma patients who do not respond to first-line treatment.

Biomarkers

The article concluded with an overview of biomarker research. In the last year, this research has included studies of genetic mutations, serum markers, blood-based markers and prognostic tumor markers. Most recently, researchers identified the biomarker, BAP1, which may contribute to patients’ genetic predisposition for non-asbestos-related mesothelioma.

Moving forward

The MD Anderson Cancer Center and the Memorial Sloan-Kettering Cancer Center, USA, will soon open enrollment for a WT-1 vaccine trial. This vaccine may prompt attacks on mesothelioma cells containing the WT-1 biomarker.

Researchers also hope to identify a more accurate prognostic biomarker for mesothelioma. While one team in Boston has identified a four-gene ration test that has decent results, they must adapt the test to account for several limitations (including the lack of real-time results).

UK Clinical Trials

If you are based in the UK, it can't have escaped your notice that the clinical trials referred to in the article are all happening in the USA.  Don't despair!  There are several clinical trials currently recruiting people with mesothelioma in the UK, according to the UK Clinical Trials Gateway (UKCTG) Link top right

NGR-hTNF
This is a study in second line treatment for patients with advanced mesothelioma who have been pre-treated with no more than one pemetrexed (aka Alimta) based chemotherapy regime.  It's currently recruiting in Manchester, Maidstone, Leicester, Northwood, Glasgow, Sutton and London.  

The trial involves a weekly 60 minute IV infusion of the agent, either on its own or in combination with another agent.  It continues until confirmed evidence of disease progression, or unacceptable toxicity occurs. 

Follow the link top right under Clinical Trials for more information, or via the UKCTG website.

ADI-PEG 20 

This trial is currently recruiting in Cambridge, Hull, London, Manchester and Southampton, including patients who have been previously treated with a platinum-based chemotherapy regime.  To be eligible to take part, you need to be tested to see if you are "ASS-negative". 

The trial drug is given weekly for six months.  

For more information, follow the links top right under Clinical Trials or search via the UKCTG website.

HSV1716

This trial is currently recruiting in Sheffield.  It's based on a mutant of the cold sore virus herpes simplex. To be eligible for this trial, you need to have a pleural effusion (aka "fluid on the lung") which is, or could be, treated via an indwelling pleural catheter. The trial drug is delivered directly into the pleural space via this catheter, if I've understood correctly!  

The aim of the trial is to test the safety and tolerability of the drug in a single and repeat doses.  Samples of pleural fluid are collected on day 29 and day 50 for testing evidence of cell death, replication of the virus and changes in the appropriate biomarkers.

For more information, follow the links top right to the UKCTG website and search under Mesothelioma.

Conclusions

Theses advancements may certainly change the way doctors currently treat mesothelioma. Each trial brings us one step closer to an effective treatment – which the mesothelioma community will pursue this year, and each year that follows, until we find a cure.  It WILL happen, one day.

A whiter shade of pale

Our world turned white on Friday as a good 6 inches of snow fell during the day.  In the brief lull between snowstorms on Saturday, the local park grew three giant snowmen.  Today, Oxford turned a whiter shade of pale as the snow came back and continues to fall as I write.

Our plans to travel to Bristol to help finish sorting and clearing the house where Steve's mum used to live disappeared quickly as the garden vanished under its blanket of white.  Very cold air is not good for those with compromised lungs.  Wisely, Steve has decided to stay put, warm and cosy inside.  No excuses now, it's time to finish his accounts and file a tax return by the end of the month.

I ventured out on Friday night, tempted by the opportunity to do a photo shoot at a Rat Pack tribute show, on for one night only at a local theatre.  Although sold out, the theatre was half empty because of the travel disruption caused by the snow. However, the empty seats meant I could get some good shots from the front row, even though it meant being picked on to dance with "Sammy Davis Junior" as "Sinatra" crooned at us from the stage!  

So....rather than post pictures of the snow, here's what happened when Las Vegas came to Oxford, along with "Dean Martin", "Frank Sinatra", "Sammy Davis Junior" and their troupe of dancers and musicians :-)

Stay warm and safe, whether you are adventurous enough to brave the elements outside or, like us, prefer to enjoy views of the winter wonderland from inside, framed by windows....

I finish today's post with big hugs for Tess, who heard on Friday that she has disease progression, for Tracey whose dad died yesterday as a result of mesothelioma, and for all the meso warriors and their carers out there who deserve lots of cuddles to help them through the difficult times.   

Pink and perky: Chemo Cycle, 5 Week 2

No, I'm not talking about Pinky and Perky puppet pigs that people of a certain age might remember either enjoying or doing their best to avoid.  I'm talking about Steve!  

Now in his second week of chemo cycle 5, the side effects of the anti-sickness pills have worn off and Steve's brain is back in top gear.  Better still, the benefits of the blood transfusion he had last Tuesday are clearly evident.  His colour looks good - rosy rather than sallow; he feels perky, has a lot more energy and isn't dropping off to sleep during the day at the drop of a hat...

In parallel, I have recovered from yet another short, sharp head cold virus which had laid me low physically at the end of last week, and a lost wedding ring came to light a couple of days later turning heartbeak into joy!

With the support of friends online and in the real world, we've ridden out the storm of last week and are now enjoying calmer, if cooler waters....Oxford's first snow of 2013 fell overnight on Monday; there was another dusting this morning and a "significant" amount of snow is expected on Friday.

We awoke this morning to news of a helicopter crash in London, in an area where many people live and work, including friends not so very far away. Sadly, there were some fatalities.  However, given the location and timing, the outcome could have been much worse. Events like that bring home to me how vulnerable to circumstance we are, and how important it is to make the most of life and the opportunities that come our way.  

Having emerged from the black hole of last week, it's good to know that Steve is now approaching his last cycle of treatment in this chemo regime and, all being well, we will be able to look forward to a fresh start in the spring.  

When Jack and Katie were small, some of my favourite books to read out aloud with them were from the Frog and Toad series by Arnold Lobel.  

Frog and Toad All Year includes a story entitled "The Corner" in which Frog tells Toad how he searched far and wide, looking round every corner to see if it was the one that spring was just around. He eventually found it when he returned home, around the corner of his own house where the birds were singing and his parents were working in the garden in the sunshine....

Stay safe in the cold winds and snow.  Snowdrops will be pushing through soon.  Winter isn't done yet, but spring is just around the corner and we will be ready to enjoy it when it arrives!

Fragile - Handle with care

This morning's mesothelioma google alert included a link to a blog on "Maggies" website (if you live outside the UK, Maggies is a charity which helps people affected by cancer).  

The blogger's partner had been diagnosed with mesothelioma recently and she is going through the whole gamut of emotions from crying in secret to getting very angry, which is so familiar to those of us who have found ourselves in a similar situation.

The anonymous poster commented on how, after the initial shock of hearing that someone has been diagnosed with a terminal illness, friends go back to being "normal".  She goes on it say how difficult she found it going back to work to cries of "Happy New Year" when all she felt like doing was screaming "Can't you understand, my life has turned on its axis....." 

I remember those feelings so well.  They never really go away, just get overlaid with other things - memories of happy times; support from friends; empathy from those who understand how you feel because they are going through or have been through the same thing.  Such things help you get past the bad times and appreciate the good times.

People sometimes remark on how positive we are when dealing with this awful disease and want to know how we manage to do it.  I honestly don't know.  The emotional investment is enormous.  It takes its toll on both the carer and the cared for. 

Believe me, there are times when it's really, really hard. You crave a strong, healthy shoulder to cry on; someone to make it better with a kiss and cuddle like your mum used to do when you were a child; wave a magic wand and make it all go away.  If only.....

Outwardly, we may appear calm and in control.  However, in my case at least, it's a very thin veneer.  The pent up emotions are there, bubbling way just beneath the surface. It only takes a small trigger to set me off - something as innocent as a kind word from a stranger, or words from someone closer who probably doesn't mean to sound harsh but simply says the wrong thing, in the wrong way or at the wrong time - forgetting, or not realising, just how vulnerable you are. 

In a similar vein, to look at Steve, you would never know that he has an incurable cancer. He doesn't appear to be ill, at least not most of the time.  However, if you saw him as I do, bent over with his head in his hands fighting nausea, or dropping off to sleep at odd times throughout the day like someone has flipped a light switch, you would soon realize that appearances can be deceptive.  

He doesn't act like a victim, or make a big fuss about having mesothelioma.  If it wasn't for this blog, only our family and closest friends would know what he is going through, and then probably only in very general terms.  I have no idea where he gets his inner strength and courage from.

Because of how he is, I sometimes think that people forget what he's actually going through. They appear to assume he can carry on as usual and is able to handle everything they throw at him, even during these last few months as slowly but surely, he grinds his way through a grueling six cycles of chemotherapy.  He will get there, but needs a bit of extra space and time at the moment.

On such occasions, I wonder whether we should wear big labels stuck to our foreheads saying "FRAGILE - Handle with care" to remind people that whilest we may appear positive, there are often times when you need to handle us with kid gloves to avoid bruising or breakage.  

You can probably tell from today's blog that we have hit a rough patch this week.  It happens from time to time. Putting it into words is just my way of dealing with it.  

This morning, Steve took his last antiemetic steroid tablet of this chemo cycle.  It takes a while for his body to adjust to coming off these meds, so we are not out of the woods yet. However, all being well, he will start feeling the benefits of Tuesday's blood transfusion very soon and his energy levels will start going up again.  When he goes up, so will I....  

Here's to feeling positive again in the near future.  

drip...drip...drip...drip...drip...Chemo Cycle 5, Day 2

It's been a bloody (literally) long day, which we spent in hospital with Steve having a transfusion to increase his haemoglobin, which we hope will improve his energy levels and reduce breathlessness.

Steve's "obs" were taken on admission at 9 am - blood pressure, pulse, temperature, respiratory rate and oxygen levels - and we were told that the transfusion would take 2-3 hours, if all went well.  

Then we waited an hour and a quarter for the blood to be brought from the blood bank, which is in another hospital nearby.... Only when it arrived did we realise that Steve and I have the same blood group - we joked that it would have been quicker to hook up a line between us!   

The first unit of blood took around two and a half hours to go through, including several short "flushes" of saline and raising the pole on which the bag is hung to increase the rate of flow - it literally is a drip, drip, drip feed, rather than the liquid being pumped through the system as it is with chemotherapy.  

After another set of "obs", the second unit of blood transfusion started about one o'clock and was over around 3.30 pm. One final set of "obs" to confirm that all was well - no sign of any adverse reaction - and we could leave.

By that time, Steve's colour had improved noticeably - he has been looking a bit wan recently - and he said that he actually felt a little better, although the main benefits are likely to be felt in the next 24-48 hours.  

That's it - the Dracula bit is done, some letters were written, a book finished and the newspaper read from cover to cover whilst the transfusion was in progress.  

I don't know about chemo brain, but I have a numb bum from sitting for hours on end for two consecutive days on the chairs provided for visitors, which are far less comfortable than the well-padded, reclining armchairs provided for patients.  Next time, I must remember to take a cushion for some bottom and back support, as well as books and newspapers to keep us occupied!

And so the penultimate cycle of this chemo regime is in progress...I'll let you know how Steve gets on in a few days time.

The penultimate cycle of this regime: Cycle 5, Day 1

As usual, Steve phoned the hospital first thing to see whether his blood test results were clear to go for today's scheduled chemotherapy - cycle 5 of 6.  No answer, so he left a message on the chemo suite answerphone and we waited for someone to call back.  And waited.  And waited.

In the end, we went to hospital anyway, still not knowing whether he would have treatment or not.  The good news is that he was cleared to go.  The bad news is that his haemoglobin levels, which have been falling steadily since the start of treatment, have continued to fall in spite of having an extended break from treatment over the Christmas/New Year period.  

Luckily, this problem can be fixed with a blood transfusion, so the first thing that happened today was having his bloods taken to be cross-matched for tomorrow's transfusion. For a change, the cannula went in first time without a problem so we were off to a good start.

The pharmacist arrived with Steve's Emend anti-nausea tablets at 11.50 and then we had to wait an hour for the drug to be absorbed before treatment could begin.  A saline flush then carboplatin went in around one o'clock, followed by another flush and a 30 minute break before pemetrexed was given. A little after 3pm and the final flush of the day had finished; the "red book" filled in; next (last!) chemo appointment was fixed for 29 January, and we were done for the day.

How nice to be home while it was still light!

Back to hospital tomorrow again for the transfusion.  I assumed it wouldn't take long, based on my experience as a blood donor.  However, Steve needs two units of blood and each unit takes two hours to transfuse.  By the time you add on waiting time to be hooked up, changing the bags of blood and get unhooked (and probably saline flushes as well?) that's another five hours on the chemo suite, plus travel time on top.  Not a lot of time to do much else tomorrow.....but it should help Steve feel a lot livelier, so it will be worth it!

I'm finishing today's post with both good news and sad news.  The sad news is that another warrior, Cher in Australia lost her battle with mesothelioma yesterday, just a few days after her 59th birthday.  

This picture was taken about a month ago, when Cher and husband Neil renewed their wedding vows.  Cher decided to stop treatment so she could spend spend quality time with her family; this one was one of those precious moments I'm sure her family will treasure forever.

Another warrior, Mavis - who was diagnosed around the same time as Steve - had her scan results today and was told that her condition is still stable.  Stable is good!  So pleased for you Mavis!  Now you can get on with those plans for the next three months...Cheers :-) 

Light a candle for the living!

On 28 December, people around the world lit a candle to remember loved ones lost to mesothelioma and other asbestos-related diseases.  

Today, 4 January, we are lighting a candle to honour, support and celebrate those are are not just surviving, but actively living with mesothelioma and showing such courage, strength and fortitude in the process. 

I have lit a candle to celebrate Steve!  Please join me by following this link ADAO Light a candle for the living  Let's light up the world :-)

Omens

I would like to think that we are not superstitious. However, in the run up to a significant event - such as Steve's assessment today - I occasionally and totally irrationally find myself thinking about unrelated matters as signs of what may or may not happen.  How daft is that?

Yesterday, my watch stopped at 3 pm for no apparent reason.  I didn't notice until nine o'clock last night, then the thought crept into my mind...oh dear, I hope this isn't is a bad omen for tomorrow?  But I reset it, and it was still keeping good time when we went to bed and woke up this morning.  Relief - time is back on track - a good omen! 

Over breakfast, the phone rang - it was the nice computer lady from the Environment Agency telling us that the flood warning we have been under since Christmas Eve has now been lifted.  Hurray - another good omen!  

However, shortly afterwards I heard Steve let out a gasp - he had just checked the letter from the hospital.  Instead of his appointment being at 10.30 as he had thought, it was in fact at 9.40 - in about half an hour's time.  Instead of leaving the house calm and collected, we found ourselves in a mad rush....bad omen?  

For a change, the traffic lights worked in our favour.  We whizzed through town with few delays, arriving at the entrance to the hospital car park with minutes to spare - good omen!  However, the parking ticket was rejected and the entrance barrier wouldn't lift. Steve pressed the button to talk to an operative, to be told that the car park was full. He explained that we couldn't back up as there was now a long queue of traffic behind us.  When he asked for the barrier to be raised so that we could drive through, exit at the other end and go to look for a parking space elsewhere, there was no answer.  Bad omen....

After sitting there for a minute or two longer wondering what to do, a vehicle eventually left the car park and a space became available near the entrance.  We tried the parking ticket again and this time it worked!  Good omen! 

We entered the day clinic right on time.  Another good omen!  And then waited, and waited and waited.  What was the problem?  Surely the clinic couldn't be running so late, so soon after opening?  Bad omen?

About an hour after he was due to be seen, we found ourselves sitting in the consulting room with a doctor.  Not Steve's regular consultant, Dr T, but a new doctor and one who clearly had not had time to read Steve's file thoroughly, in detail....oh dear again...bad omen.....

After introducing himself and having a rummage through Steve's notes, the next thing he said was "so you have now finished your chemotherapy?"  We looked at each other in surprise.  

No, said Steve.  I explained that we had been told that Steve's case would be reviewed after four cycles of chemo. The results of the scan taken before Christmas would be assessed to see if there had been a response to treatment. If the response was positive and Steve was considered fit to continue, then he would have two more cycles of treatment. That is why we were there today, to find out the result and what would happen next...

....more shuffling of papers and searching on the computer. More puzzled looks.  "Did you have chemo on 31 December?" asked the doctor.  No said Steve.  He explained that he would have had treatment on 31 December, had the three weekly cycle continued without interruption. However, there had been no slots for an assessment appointment between the scan and New Year's Eve because of Christmas in between. Steve wasn't allowed more chemo until assessed by a doctor, which was why we were there today....Then, at last, it felt like the penny had dropped and the doctor was finally up to speed with Steve's situation!  

The doctor turned to look at Steve's scan results to see whether there had been a response to chemo.  And the good news is that there has been a positive response to treatment! The pleural thickening has reduced from 16 mm to 11 mm, which may not sound like much to you. However, it is a 25% reduction after four cycles of treatment, and may well have taken the meso back to somewhere close to where it was in 2009.  We must have been grinning like the Cheshire Cat in Alice in Wonderland! What a relief....and the omens were looking good for two more cycles of treatment to knock it back even further!

After spending some time talking to Steve about how he was managing the side effects, the doctor confirmed that he would agree to two more chemo cycles.  Then followed a long wait trying to get through to the Chemo suite to fix an appointment.  I got the impression they were a bit annoyed with Steve for not turning up on 31 December, but when the doctor explained (again) that further treatment had not been authorised until today, an appointment was fixed for Monday lunchtime.

So there we are.  Things really are moving in the right direction!  And the battle continues for another six weeks or so, starting next week.  It won't be easy, we know, but it will be worth it in the end.  

Such a relief! 

Raise a glass to celebrate with us tonight! 

Hello 2013

Hello 2013....

I wonder what you have in store for us?  

Just a few years ago, I would sit down around the turn of the year, mark the calender with public holidays, birthdays, anniversaries, commitments and major events.  Then Steve and I would discuss when would be the best time to take my annual leave allowance so as to make the most of these occasions.  Work revolved around a predictable cycle, fixed in advance. Being sociable, doing projects and work on the house and garden were fitted in at weekends.  Barring the unexpected, by the start of the year life was pretty much mapped out for the following twelve months.  

Since Steve was diagnosed with mesothelioma in 2009, nothing has been predictable in our lives.  For the last three years, things have revolved around Steve's quarterly assessments and our time horizon has shrunk to the three month chunks of time in between.  More recently, the time horizon has shortened even further in line with the three weekly chemo cycle, and even then our assumptions about how Steve would feel at various times during each cycle have proved to be wildly inaccurate on occasion....

As I write, our time horizon has shortened to two days. How our lives will pan out thereafter and over the next few months hinges on what happens at Steve's assessment on Thursday. What effect have the four cycles of chemo had on the cancer?  If the CT scan shows that response has been positive, is his body capable of taking two more cycles of chemo, always assuming its on offer?  We'll have to wait until Thursday for the answers to these questions.  Only then will we have some idea what's likely to be in store for us in the near future.

In the meantime, now that we no longer have Christmas/ New Year festivities to distract us and occupy our time, it feels like we are living in suspended animation. On the one hand, I feel the urge often associated with a new year to get on and do things.  This feeling is heightened by the knowledge that if Steve does have more chemo, life will get more difficult before it gets better. If we don't make the most of this brief period of respite, the opportunity to make progress on a number of fronts is unlikely to come up again for at least another 6-8 weeks, by which time the treatment regime will be completed and the cumulative side effects will begin to wear off.

On the other hand, Steve admits that the last cycle of treatment has not been easy.  He still lacks energy and feels listless and that makes it difficult for him to get motivated.  That de-motivates me too.  In addition, although we appear to be calm on the outside, it is clear from the odd hiccup that we are both operating on relatively short fuses at present.  I am aware that my emotions are very close to the surface - another symptom of "scaniexty" i.e that horrible period where you are waiting to hear scan results, knowing that there is nothing you can do about them.  

Steve is clear however, that if the scan shows that the response to treatment is positive, he would take the opportunity to complete six cycles of treatment overall, assuming that would knock the cancer back even further.

We have not discussed the scenario in which there is no response to treatment and the cancer has continued to grow in spite of chemotherapy.  Partly, I think this is because neither of us wants to contemplate this outcome, and partly because the doctor seemed to be very cautiously optimistic, based on what he could comparing X-rays taken before and during treatment. 

So, for now we are living life one day at a time and trying to stay positive about the outcome of Thursday's assessment.  Please look in later in the week to share the news :-)