Tuesday, 2 February 2016

Getting the results and going forward....

We heard about Steve's scan results at the hospital appointment last Thursday.  Our GP phoned to tell us results of his blood test on Monday.  I haven't posted about either of them until today as it's taken a bit of time to digest all the information and to sort out ways of going forward...but we've reached that stage now, so we can now share with you.

The scan results

As expected, the cancer continues to progress.  The area causing most concern now is the external lump where the meso has grown out of the chest cavity, through Steve's chest wall and ribs.  What started out as a small circular bump visible just above the nipple (July 2014) has now grown and spread into a large lump extending upwards to his collar bone and outwards towards his armpit.

We could see clearly on the scan where the lump is pressing on the nerve bundle which travels from his neck down the right arm to the hand.  It is pressure on this nerve bundle which has caused occasional cramp and numbness in Steve's right hand and arm - not all the time, but when he gets into certain positions. 

Unless something is done to halt growth, continued pressure from the lump will result in nerve damage, pain and probably paralysis.  So the way forward is to zap it with radiotherapy using a Linear Particle Accelerator (LINAC).  

The last radiotherapy in this area was well over a year ago and it shrunk the chest lump significantly, so hopefully there will be a repeat performance this time around, although the approach will be different...This time, the beam will travel through and through the body avoiding the spinal cord and gullet, rather than dealing the lump a glancing blow, skim-hitting the raised area without penetrating the body. Because of the level of penetration, the side effects of treatment will be more noticeable than before.   

The radiotherapy planning appointment was yesterday (to set up Steve in the correct position) and the course of treatment will last five days starting on 11 February, with two days off for good behaviour over the intervening weekend.   

There was some good news too.  No sign of any obstruction or constriction to the food pipe (gullet) due to tumours, so the swallowing problems are not a direct result of cancer growth. The air passage to Steve's lower left lung (which had been reduced to a tiny hole, the size of a pin prick) has been opened up by the most recent course of radiotherapy in December 2015 and is now clearly visible as a black hole on the scan.  This means his lung is no longer in imminent danger of collapse, much to our relief.

We put the consultant on the spot about his life expectancy, knowing full well that she can't predict accurately or with 100% confidence..but we felt we needed a better idea of how much longer Steve can expect to live.  The answer was more than weeks but probably less than a year  Whether it will longer than six months or less, is anyone's guess. But at least we have a bit more time to get ourselves sorted out and prepare for the next stage of the meso journey. 

The blood tests results

The blood tests showed up several things: 

  • raised white blood cells suggesting an infection (not a raging infection, but may explain the wheezy cough and thick, coloured phlegm)
  • lower than average protein levels
  • high than average calcium levels  

Steve is now on a course of antibiotics to sort out the infection (although swallowing large capsules is proving a challenge - should have asked specifically for syrup).  

We will be getting an appointment with the hospice nutritionist to discuss how to improve his protein levels (and yes, we are using the Nutribullet and blender, making soups and smoothies, and he's having Complan twice a day as a meal supplement as well as full fat milk, full fat yoghurt, savoury pates, chocolate and sweet soft deserts - the caramel pannacotta is going down well!)... There's rice pudding and porridge still to try, but other than that I've run out of ideas so need some more suggestions from an expert. 

The elevated levels of calcium rang alarm bells with me. Untreated, high levels of calcium in the blood (caused by the cancer "eating" bone) can cause increased drowsiness and ultimately patients can become comatose and die.  However, I have since been reassured by Sarah the palliative care nurse, that although raised above normal, Steve's calcium levels are not so high as to cause concern.  They may have been like that for a while...we don't know...he hasn't had blood tests for over a year.  They will now test and monitor bloods more frequently and regularly, and take action if and when necessary.  It is treatable using bisphosphonates.

Practicalities and psychological therapies

We are moving forward on the practical front too. The pee bottle (sorry - portable male urinal) arrived today.  He doesn't need it now but its here, ready for those times when Steve can't get upstairs to the loo quickly enough.  

Another inflatable cushion is on its way - one to sit on, rather than lean back against.  He can also use it as a foot support when lying in bed.  Now the pressure sore on his back has healed, its all about prevention of sores developing on other bony bits - bottom and heels being the most vulnerable areas in addition to his spine.

On the psychological front, Steve's opted to try some music therapy sessions at Sobell House, our local hospice.  Tom, the music therapist came today to explain how it can help people in Steve's situation - from listening to old favourites which spark happy memories, to bashing drums for an hour to vent anger and frustration, via writing songs to express emotions that you might find difficult to articulate in other ways...and in other individual ways. They will transport Steve to and from the hospice and feed and water him while he's there.  Sounds pretty wonderful!  All kicks off this time next week.  Watch this space for the first composition :)

On Friday, we are having a session with the palliative care nurse about "Do not resuscitate" (DNR) considerations - a question that came up in a phone call from the GP on Friday, which I could not answer.  We know what the words mean, but have not really thought around the issue and how to arrive at a decision that's right for Steve.  Time for a full and frank discussion to make an informed choice.

Thank yous and cyber hugs

I must also say some thank yous too...to Jean, another sponsor for Jack's Tour de France cycle ride; to Margaret and Tracy for your thoughtful Facebook private messages; to all our friends who have written such lovely letters and emails and cheered us up with phone calls and messages; to Chris who diverted on her way home to Somerset to call in and say hi, and to the meso warriors for their support, as always.  And special cyber hugs for Mavis to congratulate her on her British Citizenship Award and to Amanda and Ray, who have been having a tough time.  Much love to all x 

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