going to get zapped......

Back in hospital again today, this time to discuss plans to use radiotherapy to zap the lump on Steve's chest where it has grown through the chest wall and bubbled up under the skin. It's a palliative treatment which should help with the pain he has experienced occasionally since the end of the clinical trial two weeks ago.   

We looked at the lump on the scan.  You can see where it has squeezed through the rib cage and spread out over the exterior of his chest rather than growing inside.  It was also possible to make out the much smaller lump lower down, closer to his liver, which is also trying to make its escape from inside the chest cavity.  

The plan is to have five radiotherapy sessions, with the beams zapping the lumps at an angle close to the horizontal.  This will minimise the risk of hitting healthy lung and liver tissue inside the chest, below the lumps.  Side effects are tiredness, probably a bit of "sunburn", possibly a dry cough and breathlessness as a result of the beam being close to the lung, and may be some nausea if it touches the liver.  These side effects will "resolve" (to use the doctor's words) in a few weeks.

There will be an appointment probably some time next week to plan the treatment, have a scan to locate exactly where the beams will hit the body and mark Steve's chest with reference points to get it on target every time.  This will be followed by five consecutive days of zapping.

In discussion with the registrar - a lovely doctor called Rebecca - we were told they had not been able track down the records of Steve's previous radiotherapy in 2009, when the tube ports had been zapped following the pleurodesis procedure to drain fluid from the pleural cavity.  

Luckily, there are photos on the blog of the site of the 2009 radiotherapy (on a different part of his body) which I was able to show to the doctor and the consultant.  Using those blog photos helped establish that the cancer has not seeded along the line of the ports and that they will not be treating the same area again, which is something they were concerned about.  

The consultant mentioned Steve's weight loss when she examined him.  He now weighs only 55.5 kilos, even though his appetite has improved and he has been eating more.  On the way back from the hospital we bought Complan supplement drink, full fat milk and doughnuts.  Here's hoping that piling on the calories will help put a bit more flesh on his bones and give him some more energy.  He is still dropping off to sleep when sitting quietly....

The good news is that Steve's Disabled Parking Permit arrived in the post while we were out and our lovely neighbour Marie signed for the recorded delivery on our behalf.  That's a weight off our minds!  The business accounts have been finished and sent off to the accountant to do Wride and Company end of year returns to HMRC.  Another job ticked off the "putting our affairs in order" checklist.  Next week promises to be another busy one with appointments of one sort or another on most days.  At least we will be able to put the disabled parking permit to good use on our trips out!

AZD0424 clinical trial cycle 1, week 1: Gurgle

It's the end of Steve's first week on the new clinical trial.  

We've been watching for side effects, but otherwise carrying on with whatever we've had to do...three days going to hospital and, around those appointments, more planting in the garden, including bulbs to enjoy in the spring (always optimistic!) and a day trip to London in the car to help our son move some large and bulky things from his house share to new accommodation....quite a demanding day, with no opportunity to eat properly.

Steve has felt tired...but then so have I...so whether his fatigue is a side effect of the trial drug or activity it's difficult to say.  Probably a bit of both.

What has been noticeable is the gurgling noises coming from his stomach.  Quite musical and rhythmic - more Philip Glass than heavy metal, even though its quite loud! We have just spoken to Finn, the trial nurse, and it seems to be quite common amongst those on the trial.  We will have to stock up on stomach calming medicine now this seems likely to continue....

Another noticeable thing is weight loss.  Steve's weight has now dipped below 60 kilos. When he was first diagnosed in 2009 it was about 70 kilos. 

Steve knows he needs to keep up his calorie intake, so has also been doing some research on food to eat to combat weight loss due to cancer, by eating good stuff rather than empty calories.  The "Bristol approach to Healthy Eating" has been helpful in this respect.  You can download the booklet from the Penny Bronn Centre website.   Seeds and nuts to snack on, plus calorie dense foods like oily fish, avocados and coconut milk will be added to the shopping list, as well as the stomach calming medicine!

The booklet also highlights the benefits of physical activity - supporting bone and muscle strength, energy levels and psychological  health, as well as helping maintain a healthy weight - so we will have to figure out an easy way to incorporate 30 minutes of physical exercise into our daily routine. Time to borrow a dog for walks, I wonder? 

Tomorrow is the start of cycle 2, and an early one for us - 8.30 am at the Early Phase Clinical Trails Unit.  More of that in my next post....

Post Provence

It feels like our feet have barely touched the ground since we returned from France. 

Less than 12 hours after returning home, a huge box of components for the new garden store was delivered. Within 24 hours, fence panels to screen the shed from the rest of the garden had arrived.  As both were on a 2 week delivery schedule, these had not been expected until the following Monday at the earliest.  We had to scurry around making enough space to store them outside, contact John (the friend who is helping us with the garden makeover) to arrange to build the shed base, and pick up ballast and cement to do the work.

On the plus side, this activity prompted us to organise the garden, fix and clean the garden chairs, tables and lanterns, and take greenery to the recycling centre. By the time daughter Katie and her partner Ed arrived for the weekend, we were able to sit outdoors and enjoy the glorious weather over a glass or two of wine as a pre-birthday celebration.

As Steve was not feeling great, we abandoned plans for a meal out and eat at home on Saturday evening.  By Sunday, he was feeling better again and we went out to a local viewpoint, Jarn Mound, to look down on the dreaming spires of Oxford (sadly obscured by trees and bracken on this occasion), 

have a walk around the wild garden designed by Arthur Evans (archaeologist, famous for work at Knossos, Crete) and venture a little way Mathew Arnold's field, the place said to have inspired the famous poem The Gypsy Scholar...before ending up at The Fishes pub for a picnic!  Lovely weekend :-) 

Monday was hospital day - me, not Steve this time - for a face to face assessment in the spinal unit, an explanation of the MRI scan results and a short discussion about treatment options.

For my birthday on Tuesday, we headed for the hills - the Lambourn Downs to be precise, where we climbed up to the white horse carved into the chalk and watched the paragliders take off over the Vale of the White Horse spread out beneath us.  

On to the ancient circle of standing stones at Avebury in Wiltshire for lunch, followed by a walk around the stone circle.  

Then home for birthday cake and fizz!

On Wednesday, we were hard at work in the garden with John, taking down a large shrub and extending the concrete base of the old shed to accommodate the larger new one. Thursday's task was to go through the boxes containing all the components for the new shed to check nothing missing and to stick labels on to make it easier to find the bits when we put it all together...Took a surprisingly long time.....

The weekend kicked off enjoying an evening out with our friends, Jonathan and Sally, a sort of joint post-birthday celebration for two of us!  Saturday was spent recovering.....Today, we are trying to catch up....

Over the last few weeks, we have been a little concerned about Steve's appetite.  He has had days when he has eaten little and has lost a bit of weight, judging from the loose fit of his trousers.  However, now that the high temperatures of the last few weeks have subsided, he seems to be back on track food-wise.  Maybe the loss of appetite was all related to the heat...and the weight loss due to the fact that we have been more active recently, walking a lot in France and working in the garden.  

However, there are a couple of other little niggles - occasional tenderness low down on the right side of his chest (the meso is in his right lung) and a small lump high up on the front of his chest, which he first noticed after lifting heavy bags of concrete.  Although tender at first, the lump doesn't hurt now but it still hasn't gone away.  Something to discuss with the medical team at Steve's next assessment on 18 August.  

In the meantime, we send our love to all the meso warriors going through treatment, waiting for scan results, starting clinical trials and fighting the disease in their own ways, and to those who have lost loved ones or are watching them slip away....

...and if you haven't read it already, please take a look at this article in the Independent on 1 August "Secret deal meant mesothelioma compensation scheme favoured insururers"   and consider signing this e-petition about research funding into asbestos-related diseases

Thank you x