Monday 25 March 2013

bucket, cough, eyes and awards

Yesterday, about a month after his last cycle of treatment finished, Steve put away the bucket that has lived on his side of the bed since last October in case of emergencies.  A small but significant step forward in the process of recovering from chemotherapy, although he still has occasional problems with tastes and has yet to enjoy a bottle of red wine.  

The frustrating thing is that although he's feeling more human in terms of chemo side effects, he's still prone to other infections and is now having problems with a chesty cough (not mesothelioma-related) and conjunctivitis which has now spread from one eye to the other. How unfair is that?  

Ah well, at least neither of these infections is life threatening and both are curable if he takes care of himself. However, it's enough to make him feel a bit miserable. The bitterly cold, grey, overcast weather with no let up in the foreseeable future is not helping......That said, for a few seconds today, we did spot a patch of blue sky over Oxford which cheered us up no end!

We are using this down time to slowly catch up on a few things, although lethargy seems to be affecting both of us at the moment.  Nevertheless, we now have a plan for our next adventure, somewhere a bit warmer I hope. I'll put the plan into action as soon as Steve is fully recovered from these infections so as to minimise the risk of cancellation. Getting travel insurance for someone with cancer at a reasonable cost is just about impossible so soon after chemotherapy, so we will just have to take a chance.

Congratulations to the Asbestos Disease Awareness Organisation (ADAO) for a very successful conference in America, to meso warrior Mavis and Linda Reinstein of the ADAO who were both given awards, to meso warrior Lou from Australia who travelled to the States to be there and make a presentation and to everyone involved!  

We also send special wishes to other meso warriors and their carers, especially Tess who is having a tough time with chemo at the moment; Ray who is recovering from a heart attack; Debbie who is managing her problems so well, and Jan who has added "author" to her formidable list of achievements. Details of her book The Dreamweaver's Choice here!  

Last but not least, bon voyage to Amanda and Ray who are off to Paris this week, and to our son who is now en route home from New Zealand via China and Amsterdam.  See you soon, Jack!

Thursday 21 March 2013

What can you do in two days?

We returned home yesterday evening after spending two days in Bristol.  It was hard work, but we managed to fit in quite a lot!

As well as the drive there and back again, we had a very enjoyable social evening meeting up for a meal with friends I used to work with, and adjourned to the pub afterwards to carry on catching up with each other's news.

The other main event was to be at the house where Steve's mum used to live, ready for the successful bidders at eBay auctions to pick up the various items of furniture they had won.  Over the course of the two days, we moved or helped to move out four wardrobes, one tall boy, two tables, three armchairs, one sofabed, two sewing cabinets, a mattress and a table lamp, as well as picking up a few more items to take home with us.

Being good guests, we also did a bit of house-keeping and plant care at son Jack's house where we stayed overnight.

However, it wasn't all hard work.  In between shifting furniture, we took a trip out to Severn Beach for a walk along the estuary and a mini-photo shoot of the Second Severn Crossing, followed by a brief foray into Wales for a quick walkabout in Chepstow before fortifying ourselves with coffee and cakes for the early evening furniture removal.

One foot in England, the other in Wales: my reason for taking a photo of Steve on the bridge at Chepstow with a lamp post growing out of his head!

The Second Severn Crossing

By the time we arrived back in Oxford last night around 9 pm and unloaded the car, we were both pretty tired. But Steve did remarkably well considering it's only four weeks since his last cycle of chemotherapy finished and he still suffers occasionally with side effects of treatment.

Jobs done, we can now spend a few days relaxing again and letting the tired muscles recover while we plan our next adventure and catch up on e-mails and other things that have happened while we've been away.

Monday 18 March 2013

going forward on many fronts

Although we have been in hibernation for the best part of five months whilst Steve was having chemo, the outside world has carried on regardless and we are only now catching up with what others have been up to.  As a result, over the last week, what we have done has been very much driven by events in the lives of those near and dear to us. 

After a long spell in hospital, Steve's mum went to convalesce in a care home in Bristol late last year.  She liked it so much she decided to stay, asked the family to sell her former home and her sons to set up a Lasting Power of Attorney (LPA) to help her manage her financial affairs.  

Steve volunteered to sort out the LPA and has been working his way through the intricacies of the legal process since then.  Last week, the final part in the jigsaw puzzle of documentation was received and, at long last, the application to register the LPA has been dispatched.  All we can do now is wait and keep our fingers crossed that it goes through without a hitch.

Steve's treatment has prevented us from taking a very active role sorting out and disposing of the contents of his mum's house and making it ready to go on the market. However, we have been able to document and list some of the larger items of remaining furniture to sell on eBay.  The auctions finished today and it has been a great success! Just have to sort out collection of furniture in Bristol now...

Another major event while Steve was having treatment was daughter Katie looking for, and eventually buying, a flat in London with partner Ed.  We helped them move in a couple of weeks ago, knock down a wall and remove the old kitchen.  We've just returned from another couple of days in London, this time helping to put up shelves and cupboards in the new kitchen and bathroom, and fetching and carrying things by car which are too heavy or bulky to take on public transport.  As before, we returned with a vehicle full of stuff to recycle locally, mainly cardboard this time, which was sorted out this morning.

Luckily for us, whilst in London, we missed the unexpected snowfall in Oxford yesterday.  Much of it had disappeared by the time we arrived back home last night, although there have been a few flurries today...when will spring finally arrive?  Like everyone else, we are really looking forward to some warmer weather and being able to get out and about again without putting on arctic kit!

We've been following our son's progress around New Zealand via photos on Facebook and will be spending tomorrow night at his place in Bristol where we will be meeting up for a meal with friends from my Planning Inspectorate days, as well as sorting out the collection of items sold on eBay....

As the financial year approaches, we've been back in contact with the accountant about Wride and Company's accounts and end of year returns for the planning consultancy work we've done over the last 12 months.  Not a lot since Steve started treatment, as you can imagine....

I've also been doing a daily session judging photographs in the Best Shots competition, although not doing any photography of my own and getting withdrawal symptoms!  

Our meso community friends in the cyber world have been springing surprises.... Ray, the husband of Meso warrior Mavis was taken into hospital following a series of heart attacks, which took everyone by surprise.  But thankfully, he's back home now and Mavis is sorting out a healthy diet to keep him there!  

Debbie in Plymouth has been in hospital for a blood transfusion and has been having problems with some pain. Ray (Amanda's partner) has also been having pain and nosebleeds caused by the pain relief.  Jan's meso hasn't been playing up, but her stomach problems have been getting her down, poor thing.  Tess in Kent is battling on with more chemo and the associated side effects.  Sending love and hugs to all of you, and meso warriors around the world.  

When the next few days are over, we are hoping to make some progress on matters close to our own hearts which have fallen by the wayside recently...some more social meet ups, photography and travel in particular, as well as practical things like spring cleaning and gardening...when spring finally decides to arrive!  Soon please, soon...

Tuesday 12 March 2013

Getting back up to speed, slowly

We really enjoyed sharing the good news last week that Steve has responded positively to treatment after six cycles of chemotherapy (Alimta/pemetrexed and carboplatin). 

We've also been touched by all the wonderful messages sent back to us - so sorry that we've been unable to respond to everyone individually, but thank you, thank you, thank you for your thoughts and support!

The celebrations continued at the weekend; an enjoyable, delicious lunch in Bristol with nephew Nick, his partner Kate and lovely 3 year old daughter Esme, then on to tell the good news to Steve's mum in her care home.  She's profoundly deaf so we couldn't tell her over the phone!  

It was good to see her again as our visits were few and far between while Steve was having treatment. Good timing too - perfect opportunity to deliver a Mothers Day card and flowers!

I was back in the hospital again yesterday, but this time on my own.  Inspired by fellow blogger Mavis, I had contacted the Oxford University Hospitals Cancer Services about joining the Patent and Carer Panel.  Yesterday was the first opportunity to attend a meeting.  Various matters discussed, from hospital food (cooked in Wales and transported chilled by lorry to Oxford every day!) to the perennial problems of car parking at the hospital.....

One of the most interesting things from my perspective was a patient's complaint that he saw a different doctor every time he visited hospital so always had to start afresh at every assessment - a concern which I echoed.  I'm sure that most patients would prefer to see the same one (or two) doctors on every visit and build up a relationship over a period of time.  

There's a lot to be said for continuity of care which allows a patient and doctor to get to know each other.  At least that way, the doctor should be up to speed with the patient's history and treatment stage without having to refer extensively to file notes at the start of the consultation, which doesn't instill you with confidence that they are on your case!

A doctor who becomes familiar with the person (not just the patient) in his or her care should also be able to spot any obvious changes in their physical appearance and/or demeanor which might be indicative of a deterioration or improvement in health since the previous assessment.  

Regular contact must also help build trust and confidence between doctor and patient, which is not so easy when talking to a complete stranger about matters of life and death and all things in between...

...The benefits of continuity of care all seems so obvious when viewed from the perspective of a patent or carer.  No doubt, someone from the medical profession will now tell me why it doesn't (or can't) happen like that....

Another meso-related matter this afternoon - this time a phone discussion with Jo from the British Lung Foundation as an adjunct to the BLF's current mesothelioma survey.  If you are affected by this disease and haven't completed the questionnaire already, you can do it online by clicking here  

After being hermits for so long, we are finding it a bit of a challenge to get back up to speed in oder to make the most of the three months before the next assessment in June. The freezing cold, biting wind and occasional snow showers aren't very conducive to being outdoors, especially with a compromised lung, so it's easier to sit tight at the moment rather than get out and about.  

However, there are a few sociable things pencilled in on the horizon to look forward to in the coming weeks and no doubt the calendar will start to fill up quickly now we are able to make plans for the next three months.  In the meantime, we are enjoying looking at Jack's photographs of a sunny New Zealand on Facebook and are looking forward to seeing the progress on Katie and Ed's new flat in London next weekend.

Perhaps we will be able to get back to photography soon. I do hope so. I think we are in dire need of a bit of creativity to get the life juices flowing...However, I was delighted when a business in Germany contacted me to say they wanted to display one of my photos in their reception...the same one that appeared in the Guardian Weekend magazine a few months back.  So if you ever go to the offices of OOSE Innovative Informatik in Hamburg, give me a report back on how it looks!

Last but not least, congratulations to fellow blogger Jan on the publication of her novel; cheers to Amanda and Ray and Mavis whose conditions remain stable, and hugs to Debbie, Tess and all the Meso Warriors who are having a tough time at the moment - sending positive thoughts to you x

Thursday 7 March 2013

An agonizing wait, and then....

The Big Day dawned.  Time to go to hospital to hear the results of six cycles of chemo over the last five months.

With an appointment at 12.30 pm, we guessed we would have to wait to see the doctor. Steve still tends to feel nauseous if he doesn't eat quickly when he starts to feel hungry, so we took the precaution of having toast and coffee before setting out.  A wise move as it turned out.....

....We arrived in good time and were directed to the waiting area ready to be called into the consulting room.  

15 minutes later, still there....

30 minutes later, still there....

45 minutes later, still there....

60 minutes later - at last!  Steve called to be weighed, then on to the consulting room where we sat and waited again....

5 minutes later, no sign of doctor....

10 minutes later, no sign of doctor....

15 minutes later, no sign of doctor....

20 minutes later and the doctor arrived - the same one that saw Steve after four cycles of treatment and gave him the all clear to have two more cycles of chemo in January and February.  He recognized us.  However, given the circumstances, it was rather disconcerting to hear him go on to say "So, you've now had four cycles of treatment?" 

We put him straight, expecting him to move on to the scan results...but no - it was the usual questions - How are you feeling?  Any problems?  How's the breathing?  Side effects of chemo?  

Then, at last, after an agonising wait, he opened the file on the page with the radiology report and simply said that there had been a positive response to chemo - a further reduction in the pleural thickening.  Did we have any questions?

I think it must have taken a second or two for the news to sink in, but then it was like a great weight lifting!

We looked at the scan and, boy, did it look good to our untutored eyes!  The left lung is still clean. The small pleural plaques are still there in the right lung, but the misty cobweb of cancer cells around the lining of the lung has definitely shrunk and there is a nice big black space in the middle, which is as it should be!  

The doctor confirmed that the mesothelioma is still confined to just one lung.  Nothing else had shown up on the whole body scan - so no metastasis. 

Steve has been signed off until June.  His next appointment is a matter of 10 days off the fourth anniversary of his diagnosis.  We have three whole months to enjoy ourselves, starting with a bottle of prosecco tonight!  Please join us in a virtual glass to celebrate :-)

The news has already gone out to family and some close friends.  Our son will get it when we wakes up tomorrow morning in New Zealand.  I think we will still have smiles on our faces then and for quite some time to come!

Steve on his birthday, with the Meso Warriors flowers


Tuesday 5 March 2013

a bit like buses....

You are probably familiar with the saying about English buses.  You wait and wait at the bus stop and nothing comes for half an hour, then six buses turn up together.  

Our lives feel a bit like buses at the moment...Five months of not a lot happening whilst Steve has chemo, then everything kicks off at more or less the same time!  

In the last week....

  • Steve had a post-chemo scan
  • daughter Katie and partner Ed became the proud owners of a London flat 
  • we spent three days in London helping get the new flat ready to move into and transporting things in a big white van driven by Steve
  • Steve celebrated another birthday on Saturday, the fourth since he was diagnosed with mesothelioma
  • we took son Jack to Heathrow airport yesterday to wave him off on a trip to New Zealand via China
  • we enjoyed a long lazy pub lunch today with friends from our student days, visiting Oxford on their way back north after a weekend away
  • tomorrow we will be at Focus on Imaging at the NEC, Birmingham to get a bit of photographic sparkle back into our lives
All this activity is well timed to take our minds off Thursday, the Big Day when we will be told the results of Steve's scan and find out what effect six cycles of chemo (pemetrexed/Alimta and carboplatin) have had on his mesothelioma.  

Whilst all these activities provide some distraction, the reality is that the results of the scan are at the forefront of our thoughts for much, if not all, of the time. Not surprising really, as the outcome of Thursday's appointment will determine our lives for the next three months or so and if/how the largely blank pages of the calender for the rest of March, April, May and early June will be filled.  

But tomorrow is another day.  Focus here we come!

Sunday 3 March 2013

Birthday boy blog :-)

What I did on my birthday....

Hello everyone, Steve here making a guest appearance.

Firstly, I want to say a big thank you to everybody who sent me birthday wishes, via the post, email and Facebook, and an extra special thank you to the Warriors who sent me the beautiful bunch of flowers, I was touched. 

I really must work out how to respond on Facebook.  My excuse is that once I learn how, I'll be on it all the time and I'd get even less done than I do now!

What do you get a man who doesn't want anything for his birthday? Can I suggest a "white van experience"? 

Driving from Oxford to London, around London to Ikea and Homebase, and then back to Oxford in a Trafic van was a hoot. Throw in transporting a demolished stud partition and redundant kitchen units to two recycling sites in Haringey which have headroom restrictions of 1.8 metres to keep such vans out to disuade trade use, and then back down the motorway to the Oxford recycling centre to dump the stuff there, and you have the perfect present!  

It was good to be able to help out at Katie and Ed's new flat. Amazing progress in transforming it to meet their needs has been made in such a short time. It also took our minds off the imminent clinic visit on Thursday when I get my scan results. 

I certainly feel well, and the unpleasant side affects of the chemo have almost completely disappeared now, so fingers crossed for good news.

The four year anniversary of my diagnosis is in June, I will write another guest post then. 

Bye for now.

Steve x

Editor's Note
In case you are wondering, he wasn't being ironic...Steve really did enjoy being a white van man!