Full steam ahead!

Four weeks since Steve had his last dose of chemo and we were back in hospital again today for his post-treatment scan.  An early start for us as no food allowed for two hours before the scan and request to arrive 8.45.  At least we didn't have a problem finding a parking space at that time in the morning!

No need to drink 1.5 litres of water today (which is what has happened before) so I'm not sure why were were asked to arrive 45 minutes before the scan was scheduled.  It meant we just had to sit there in the waiting area even longer!  

Today, it took three attempts before the nurse managed to insert the cannula for the iodine injection which will show up on the scan and help the radiologist make sense of it.  Steve came out peppered with cotton wool stuck to his arm.

We return to hospital next Thursday to hear the results, so this would normally be the time when stress levels mount. Amanda and Ray are feeling it at the moment....However, unlike last week which was very, very quiet here, things are hotting up and we will shortly be swept up in a whirlwind of activity.   

Between now and the follow up assessment we'll have a couple of days in London helping daughter Katie and her partner get their new flat ready to move into; son Jack will be visiting us for the weekend before heading off on a big adventure, with us providing the taxi service to Heathrow; lunch out with friends from our student days; and a trip to the Focus on Imaging event at the NEC, Birmingham and, most important of all, Steve's birthday to celebrate on Saturday!

Plenty to keep us occupied and take our minds off what we might hear or might not hear at the follow up assessment next Thursday.  

In the meantime, if you have, or care for someone with, mesothelioma and live in the UK, you might like to read the Mesothelioma UK Spring 2013 newsletter - lots of news about interesting looking drug trials - which you will soon be able to download from the website by clicking here . The British Lung Foundation is carrying out a mesothelioma survey to get a better picture of people living with this disease.  You can access the survey by clicking here!

I think I have persuaded Steve to make a guest appearance on the blog on or around his birthday, so please check back at the weekend to see if I have been successful :-) 

a bit of quiet, some drama and the wizard of Oz

Watching the Six Nations Rugby Cup on TV yesterday reminded me that around this time last year, we were in a snowy Rome watching England v Italy at the Stadio Olympico, seeing the sights, visiting museums and galleries and enjoying the hospitality of fellow photographer Giuseppe and his wife Maria Adele.  

Although the weather has been similar this year - bitterly cold with occasional snow flurries - in other respects, this week couldn't be more different to last year. Very quiet indeed. Whilst I've had lots to keep me occupied, other than going out to do the food shop, Steve has stayed tucked up indoors the whole time, enjoying crosswords, sudoku and web browsing.  

Thankfully, no more nose bleeds and no more sickness after last Wednesday's episode, although Steve still needs to nibble on a ginger biscuit before getting up so as to avoid morning nausea.  While his appetite is good, he is still experiencing "off" tastes so we have yet to enjoy a beer or bottle of wine together.  And his energy levels remain low, although he feels a bit brighter day by day. 

So a quiet week all round here, in stark contrast the fellow meso bloggers Debbie, Tess and Jan:  

Debbie has been in hospital fighting an infection and having a very bad reaction to the antibiotics intended to help her recover. Tess has started chemo, but had problems with her arm swelling up which suggested there may have been some leakage into the surrounding tissue.  Jan has at long last found out the cause of her stomach problems, only to be told that fixing the problem might risk disturbing the mesothelioma and spreading it into her abdomen.  

Sending love, hugs and positive thoughts to all of you xx

Reading about all these dramas makes me appreciate how lucky we are to have had such a quiet week.  However, things are due to change soon....

Steve's long awaited post-chemo scan is on Tuesday.  In contrast to the long time we had to wait for a scan appointment followed by another nail biting wait to hear the results, Steve in Australia saw his oncologist last Friday, has his scan appointment tomorrow, Monday, and the results will be available at his appointment on Wednesday.  I think we could do with a little of that Wizard of Oz magic here, Steve!  Fingers crossed that the Gemzar chemo works well for you.

Daughter Katie and partner Ed are hoping to get the keys to their new home in London some time during this coming week.  If that happens, we are on call to deliver the various bits and pieces we have been storing for them pending this momentous occasion, to help dismantle the old kitchen and knock down a partition wall.  And yes....we will be very careful to check there is no asbestos present before any demolition takes place.....

It's Steve's birthday next Saturday - another welcome milestone as any meso warrior will tell you - and we are looking forward to seeing son Jack who will be here to help us celebrate! 

But there's another week before then and who knows what's around that particular corner?  With that thought in mind, this seemed like an appropriate way to finish today's post - it's called The Other Side.  Enjoy :-) 

baby steps back and forth

Having finally finished his six 21 day cycles of chemo (pemetrexed/Alimta and carboplatin), our expectations are that Steve will slowly but surely recover from the side effects of treatment.

Yesterday was a small but significant baby step forward - for the first time in ages, he blew his nose and didn't leave a bloody stain on the tissue.

This morning however, he felt nauseous as he was getting out of bed and was physically sick for the first time since the start of chemo back last October, if my memory serves me correctly.  I had been wondering whether it was time to put away the emergency bedside bucket, but it seems that baby step forward will have to wait a while longer...

Although we have been keen to get out and about again after the long winter/chemo hibernation, no plans were made for this week as we need to be around to take a delivery on behalf of daughter Katie.  

I confess...I had felt just a little bit disappointed at being home bound again.  However, in retrospect, perhaps a quiet week relaxing and recovering is a good idea.  Steve's body has had a lot of punishment over the last five months or so and it will take time to recover from the side effects of six cycles of treatment.  There's a busy period ahead of us late February/early March, so now is a good time to build up strength and energy.

Special hugs to other meso warriors Debbie in Plymouth, who is back in hospital being treated for an infection which is unrelated to the mesothelioma and to Tess who starts a new regime of chemotherapy tomorrow.

I have added two new blogs to "We are not Alone" both by Australians with mesothelioma: Lou Williams a long term survivor first diagnosed with peritoneal mesothelioma in late 2003 followed by pleural mesothelioma in October 2009, and Steve Cook who was diagnosed in spring 2012. You can follow their journeys by clicking the links on the right.  The band of Meso Warrior brothers and sisters marches on.....

Chemo Cycle 6 finishes and treatment comes to an end

For the record if nothing else, today is the last day of chemo cycle 6.  

It marks the finish of Steve's chemotherapy regime with Alimta/pemetrexed and carboplatin, his second chemo treatment since the Velcade/cisplatin drug trial back in 2009 when he was diagnosed with mesothelioma.

In some ways, I feel we should be marking the significance of this day.  It's been quite a grueling five months during which time we have more or less gone into hibernation - although the awful weather is probably just as much to blame for that as the chemo!  

However, in other ways today doesn't feel significant. The side effects of treatment won't come to an abrupt end simply because we've reached day 21 of cycle 6. Things will get better over time, but it's baby steps forward at present...

We have no idea what effect the treatment has had on Steve's mesothelioma - that will have to wait until the follow up meeting after the scan, when we will have the opportunity to talk through the results with the doctor in March.

So...treatment is officially over, but the side effects linger on and the outcome is unknown.  The waiting game continues on both fronts.  

With so much still in the pipeline, it feels a bit of an anti-climax in some ways. However, at least we don't have the prospect of another day in hospital looming over us tomorrow.  The sun is shining today.  And we are both still here to enjoy it together, 44 months almost to the day when Steve heard his diagnosis.  That's got to be worth celebrating!

Emerging from hibernation: Chemo cycle 6, final week

It's a few more days yet until Steve's final cycle of chemotherapy comes to an end, but we are beginning to emerge from hibernation and what better week to choose?  

We tossed pancakes on Tuesday, had a romantic candlelight dinner together to celebrate Valentines Day on Thursday and took a day trip to London yesterday. 

However, it nearly didn't happen! Checking Facebook over breakfast, we saw that Debbie in Plymouth (who went through the same chemo regime as Steve last year) had been taken into hospital with a fever and "rigours" - suspected pneumonia we learnt subsequently.  It's some time since Debbie finished her treatment, but it seems that her immune system is still not back up to full strength.  

Steve had a bit of a wobble as a result - should he risk picking up an infection by mixing with lots of people on a day out in London, given that he's still in the final cycle of treatment?  At one point, I thought he was going to stay at home, but in the end, he decided to take the risk and enjoy himself!

First stop, the National Portrait Gallery to see the Taylor Wessing Photographic Portrait Prize Exhibition, followed by lunch.  In the afternoon, we strolled through Trafalgar Square, over Waterloo Bridge to the South Bank complex and into the Haywood Gallery to see the Light Show exhibition.  And jolly good it was too!  If you are in London, do try to visit.  

Here is Steve coming out of the blue!

After a rest in the rooftop Waterloo Sunset Pavilion, we walked along the Thames to Tate Modern, where we treated ourselves to tea before heading off to see the third and final exhibition of the day "A Bigger Splash".

With hindsight, that was probably an exhibition too far...we're not used to a full day's activity and both felt pretty tired by the time we emerged.  So we were happy to go back upstairs to the Members Room and sip some wine whilst admiring the wonderful views of the Thames, St Pauls Cathedral and the City as we waited for daughter Katie and partner Ed to join us for a meal and to catch up on news.  

What a lovely way to finish the evening!

The Oxford fast train was boarding as we arrived at Paddington, so no hanging about at the station for a change.  We were soon dozing off as we were whizzed back home.  Just time for a night cap before falling into bed!

Today we are both feeling the effects of a long day out and haven't had the energy to do much...just taking things very easy!  Looking forward to Let's Dance for Comic Relief nonsense this evening on TV as people do something funny to raise money for good causes in the UK and Africa.  If you have no idea what I'm talking about, follow this link :-) 

Hope you are feeling better now Debbie - rest up and take care until you are fully recovered.  Sending love and hugs!

Back on track, if a little later than planned....

If you read yesterday's blog, you'll be aware that we were anxious about whether there would be enough time for the radiologist to write a report in between Steve's scan on 26 February and his follow up assessment two days later.  

Encouraged by friends and the Meso Warriors, I contacted the hospital this morning and eventually the lead chemo nurse rang back to discuss our concerns.  As we suspected, it's a very tight turnaround time and whilst not impossible, it's very unlikely that the radiology report would be ready in time to discuss at the follow up meeting as scheduled.

Rather than take that risk and get ourselves all psyched up for nothing, Steve's assessment has been put back to the next week, allowing a full seven working days between the scan and the follow up meeting.  All being well, that will be sufficient time for radiology to assess the scan and report.

Of course, it prolongs that agony of waiting to know the outcome, but at least we will be able to make an informed decision about what, if anything, happens next, knowing that its based on a detailed report by an expert in such matters.

Many thanks to all those who contacted us after reading yesterday's blog - it's wonderful to know there is all that support out there for us!  

This is for you, for tomorrow....but shhh...you must pretend you don't know who its from ;-)

SCANdalous!

Let me say at the outset, I'm eternally grateful for the NHS and how it has helped us since Steve was diagnosed with mesothelioma in 2009.  However, there are odd occasions when it can be very frustrating from the patient/carer's point of view, such as the failure of the triage system the night we needed it (blog entry 14 October 2012) and the shambles over the Christmas/New Year when appointments for X-rays and assessments got out of sync and Steve's treatment was delayed as a result (blog entry 17 December 2012) although that worked out best for Steve in the end, as it happened - he needed a break!

We have just experienced another one of those occasions. Not a really big issue, but one that is frustrating because it was foreseen and could have been avoided if one hand of the NHS had paid attention to, and acted on, the request of the other hand. 

Please don't read any further if you are likely to get upset by a whinge...It's just my way of letting off a bit of steam! If you happen to be involved in the NHS, then please read on, take notes, put yourself in our position and if the circumstances I describe apply to where you work then please think about what you can do to avoid such situations occurring in future.  And then do it!

Anyone with mesothelioma will tell you about the importance of scans - how they become the yardstick by which those with the disease and their carers measure and arrange their lives in short chunks of time, rarely daring to look beyond the date of the next scan and follow up meeting when we find out the results.  

Pain may not always be a sign of disease progression; neither is the absence of pain a guarantee that the meso isn't growing.  It is only by looking inside the body, either crudely with an X-ray or in more detail with a scan of some sort that it's possible to assess with any degree of confidence whether the disease is active and aggressive, growing, spreading, stable or reducing in size.  

Is it any wonder therefore, that we all get twitchy, anxious and stressed in the run up to a scan, wondering what the news will be?  So much depends on the outcome of the scan - whether we can heave a sigh of relief that there is no change; celebrate like we've won the lottery when there is shrinkage; prepare ourselves for more treatment if that is an option, or face living with quality rather than quantity of life if options have run out, or the thought of having more treatment with all the attendant side effects is no longer tenable.

I think it's fair to say that it takes an expert and experienced eye to "read" scans and assess whether there has been any change when compared to the "benchmark" scan.  It's not as if you can simply put one image on top of the other and play spot the difference!  With so many sections in a CT scan, it's important to compare like for like and to be able to measure changes as small as a millimetre on each section so as to build up an accurate overall picture of change. In other words, it's not a job that can be rushed if it is to be done properly.....

In the past, the doctor has usually allowed around two weeks between the date of the scan and the follow up meeting to go through the results.  Not that it takes a fortnight to assess the scan - just that there is usually a queue of scans for the radiologist to look at and it takes time to do a thorough job. 

Steve had his last assessment on 28 January. His scan referral form was filled in there and then, with a handwritten note requesting an appointment in sufficient time for the scan to be considered and the radiologist's report prepared before his next assessment on 28 February, a whole month away.  

Knowing that it usually takes a couple of weeks for the results to be looked at, we were expecting for Steve to be given an appointment some time this week so that the results would be ready for his post-treatment assessment at the end of the month.  We were also hoping for at least a few days advance notice of when the scan would happen so as not to make plans which then clash with the scan date and have to be rearranged.   

With no appointment in the post by the end of last week, Steve phoned the hospital yesterday to check that he was "in the system" for a scan and find out the date.  Getting through on his second attempt, he was surprised when told that as of 11 February, they had only just started looking at the referral forms going back to 28 January.  It seems that Steve's referral had been sitting in the pending tray for 14 days without any action - no one had even checked to see if were any marked urgent!

The good news is that as a result of phoning, Steve now has a date for his scan.  The bad news is that it's only two days before his follow up assessment meeting.  I ask myself, what are the chances that the radiologist will assess the scan and write a report so that it is ready for the oncologist to give us the results the next day?  The answer, I think, that the chance of that happening is about as remote as ......Well, you can choose your own metaphor! 

I've no doubt that the doctor will take a look at the scan before we are called into the meeting room on assessment day, but I doubt somehow that it will have been given a very thorough going over. 

I hope very much that my fears are unfounded, especially as this is a really important scan from our point of view. ALL scans are important.  However, this the one that will give us a clear idea of the impact that six cycles of chemotherapy has had on the mesothelioma and whether the last five months of treatment and side effects have been worth it, so it's really, really important from our point of view.  

Unlike the majority of mesothelioma patients who appear to have scans every three months, our hospital relies on X-rays for quarterly assessments, following up with a scan only when the X-ray suggests that something might be happening.  As a result, Steve has had relatively few scans compared to others diagnosed back in mid 2009.  

Given their rarity, each scan Steve has is like gold dust in terms of getting a really detailed, accurate picture of what's going on inside. It deserves to be looked at carefully and thoroughly by an expert, as it will influence the course of our lives for the foreseeable future, one way or another.  Is less than 48 hours long enough to do something that usually takes a fortnight?  Only time will tell....

The frustrating thing is that this could have been avoided if those responsible for making scan appointments simply looked through all the outstanding referrals at the end of each day, pulled to the top those that are time critical for whatever reason and booked a slot in time to meet the deadline - a sort of triage system for paperwork. 

Why on earth does it take at least two weeks for a bit of paper to get to the top of a pile?  Why have a bit of paper in the first place?  Why not a computer-based system accessible to medical staff so that, if nothing else, they can see dates when scan slots are available and the patient can book an appointment for the scan and follow up assessment at the reception before leaving the hospital.  

No doubt someone will tell me that there are administrative flaws in this approach, but would they be any worse than the hoops, anxiety and stress that patients and their carers go through as a result of the current system? 


Or perhaps it all works like clockwork in other hospitals, and we are just the unlucky ones on this occasion? 

Living with the unpredictable Cycle 6, week 2

As each cycle of Steve's pemetrexed/Alimta and carboplatin chemo has been different in terms of side effects, we had no idea what this final cycle of treatment held in store.  The answer so far?  A little bit of everything...

The horrible "off" tastes which dominated last week have subsided, although not gone completely.  The runny nose which has happened at some point during every cycle has returned, bringing with it on occasion enough blood to stain a tissue.  Also making what we hope will be a last appearance are the sore, stingy eyes - starting earlier in the cycle than previously, so hopefully finishing earlier as well.

There has been the usual nausea, but this time occasionally at night as well as in the morning which is what happened in previous cycles.  Luckily it seems to go as soon as soon as Steve has something to eat in the morning or lies down at night.  

A sore mouth made a brief appearance, finishing as abruptly as it started, not lasting long enough to need to use the numbing mouth wash. No itchy rash this time, at least not so far....

The impact of last week's blood transfusion has been subtle. Rather than giving him enough energy to dance in the street, it has allowed Steve to keep going for longer without an afternoon nap, early night or dropping off to sleep at the drop of a hat at awkward times. 

Confidence boosted that he won't keel over during the day, we managed two whole days out last week;  a trip to the Heritage Motor Centre at Gaydon, where we enjoyed looking at some classic cars, and a day in Bristol, progressing matters relating to the Lasting Power of Attorney for Steve's mum; collecting some things from her old house and photographing/cataloguing a few bits and pieces for sale now that an offer has been accepted on the property.

The final week of the final cycle of this chemo regime is almost upon us, so we won't have long to wait and see what other surprises are lurking in the wings in terms of side effects.  

We will have to wait rather longer to find out what impact the treatment has had on the meso.  Steve's next assessment is not until the end of the month and we are still waiting for an appointment for a scan.  Bearing in mind that it usually takes at least two weeks for the radiologists to interpret the results, opportunities to fit in the scan in time for the report to be ready by the next assessment are now getting uncomfortably tight. 

If nothing comes in the post tomorrow, we'll have to start making phone calls to hurry things along, or risk arrangements going pear-shaped again as happened over Christmas/New Year when scans, tests and assessment got out of sync, with consequent delay in treatment.

We are not the only ones getting frustrated whilst playing the waiting game.  Meso Warrior Tess in Kent was told she would be starting chemo in a fortnight, only to find out subsequently that prior to treatment she would need a kidney function test which took 10 days to get an appointment and another 10 days to get the results.  As she says in her blog, you get yourself all psyched up for treatment, then are made to wait which adds to the stress and anxiety. 

Living with the unpredictable is an inevitable consequence of mesothelioma, and we have no choice but to learn to get on and deal with it.  However, the time required for various medical procedures and tests IS predictable.  Why then is it so difficult to organise appointments in the right order at the right time to start treatment within the planned timescale?

Although personalised treatment plans is a growth area in research, at present no one can predict how an individual will respond to a specific course of treatment.  That has been brought home to us vividly this week by news from two other meso warriors, both of whom have recently had the pemetrexed/Alimta and carboplatin chemo regime.  

Debbie in Plymouth was told that although in some areas her meso was stable after a full six cycles of treatment, there has been some disease progression in other areas.  As a result, she will be starting a new regime of Vinorabline next week.  Debbie, along with the wider meso community, we send you lots of love and hugs to help you in this new attack on Theo.  He won't know what's hit him!

In contrast, Jan was forced to stop her chemo regime after having a very bad reaction on her second dose.  She was convinced that the disease had progressed and was getting herself psyched up to hear bad news at her assessment last week.  When it came, the news was not at all what she had predicted.  In fact, there had been a very widespread positive response to chemotherapy, from virtual dissolution of the disease in some areas and a 50-75% reduction in other areas :-)  Wooo Hoo!  Who could ask for anything more?  So pleased for you Jan!

Meanwhile, like Mavis and Ray, Amanda and her Ray and many other meso warriors and partners worldwide, we are looking at dates scans and assessments looming on the horizon.  As always, we hope for the best news but prepare ourselves for the other type of news, which is how we live with the unpredictable these days.  But the important thing is that we and our partners are LIVING with it!  

Pancakes and Valentines on the horizon next week.  I wonder what else we will get up to?  

The psychology of chemo cycle 6

Now that Steve has had the sixth and final session of pemetrexed/Alimta and carboplatin, we have both fallen into the trap of thinking that for all intents and purposes, this regime of chemotherapy is over. 

Hopes have been high that things would return to "normal" now, especially as Steve also had three units of fresh blood to boost his haemoglobin level, and with it his energy, following chemotherapy.

After four months of living with the side effects of chemotherapy and associated medication, Steve has been looking forward to his mind and body reverting to its pre-chemo condition (other than the mesothelioma!) and I have been fantasizing about places to go and things to do after being largely homebound for what feels like a very long time.

The upshot of these great expectations is that we have felt a bit disappointed and rather let down by the way he has been feeling over last few days.  We need to manage our expectations more realistically.  

The reality is, of course, that the final cycle of this chemo regime is far from over.  In fact, it's less than a week since Steve had his last dose of drugs and the marathon blood transfusion session.  The poison is still in his system and will be for some time to come.  Not surprising therefore, that the side effects of treatment still loom large on a daily basis.  

Every chemo cycle has been subtly different in terms of how Steve's body has reacted. This time round, it's the problems with a bad taste in his mouth which have been getting him down.  It's happened every cycle, but cycle 6 seems to be noticeably worse, possibly because he was looking forward so much to it getting better.  Food tastes fine when he eats, but some flavours persist long after the meal has finished, eventually turning into "off" tastes which linger in the mouth.  Using a mouthwash simply replaces the bad taste with another strong flavour which quickly goes sour, leaving him back at square one.

Yesterday, in an effort to counteract these bad tastes, Steve munched his way through lots of sugar-free sweets which brought some periods of temporary relief before the problem returned with a vengeance, making him quite miserable and frustrated.  At times like this, I feel quite useless - unable to think of anything to do or say that will make it better.  We just have to keep reminding ourselves that things will improve, it's only a matter of time.  

In the meantime, fresh orange juice during the day and French cider in the evenings are Steve's current drinks of choice as they both seem to cut through the bad taste.  I am so looking forward to sharing a bottle of good wine with him again over a meal, but that will have to wait a while longer. I don't like to drink alone, so one consequence of Steve's taste problem is that my alcohol consumption has reduced noticeably, which has got to be a good thing. 

As the next hospital appointment is not until the end of the month, I'm raring to get out and about again - a strong case of winter cabin fever, I suspect.  However, Steve's immune system will be at its most vulnerable next week, so exposing him to places where large numbers of people are gathered together, such as galleries, museums, cinemas and even buses and trains would not be a good idea.  That doesn't have to stop us thinking ahead a little bit though!

Rather than dwell on unfulfilled expectations, I think the psychology of dealing with chemo cycle six - so close to finishing, but not there yet - is to remind ourselves about the things that have been achieved and what we know from experience is likely to happen.  

Steve has done brilliantly well to get through six cycles of chemotherapy. The last doses of chemo have been administered.  Yesterday, he finished the programme of anti-sickness medication so NO MORE PILLS on a daily basis, (other than folic acid tablets until the end of the cycle).  

The green medication bag which has lived on the kitchen work top for much of the time since last October has been put away, only to come out if needed in an emergency.  

As the side effects of the antiemetic drugs wear off, his fuzzy head will become clearer and the opposing pull of the steroids which make him buzz and the chemo which makes him tired will ease off. The benefits of the blood transfusion will become more noticeable, boosting his energy levels.  

Although we're not there yet, the end is in sight for this particular stretch of the journey and (as people keep telling me) from here we go up.  So...onwards and upwards!