Tests, Tests and More Tests!

It seems ironic (and not in a good way) that the date we first saw the Cardiologist was Valentines Day.  Personally, I think that he (the cardiologist) had a pretty good idea of what he thought might be wrong after he had examined David.  He immediately ruled out heart problems, which at the time felt like a relief.  Quite what I thought the pain might be caused by, I haven’t a clue.  It certainly hadn’t crossed my mind that it could be cancer.  The pain had been that bad that David had barely had 2 hours sleep per night.  He ordered David to take a number of tests and it was these that lead to the diagnosis. 

We visited the hospital on 18^th February for David to give blood to carry out testing – whilst I can’t recall now all the tests, what I can tell you is that it was practically a full blood MOT.  I remember going in with David whilst he had the blood taken, his voice was still not particularly strong.  They seemed to just keep lining up the little blood sample bottles until David asked whether they were going to leave him with any blood to take home.

Next on 22^nd February David had an x-ray on his shoulder then we wrangled a bit with BUPA as they were being a bit awkward about his bone scan.  They wouldn’t cover it if it was just a routine bone density test.  This made me quite frustrated.  After numerous telephone calls I managed to find out that it was a Nuclear Medicine Bone Scan, so BUPA would cough up – phew!  So on 28^th February we went back to the Hospital for this scan.  Like many other scans, David had to be injected with some form of radioactive matter, which needed to circulate round his body for a while before the proper scan could begin.  After the injection they took some initial pictures to see how well the fluid was circulating through David’s body.  We were then sent down to the x-ray department for David to have an x-ray on his chest.  It was all very efficient and quick.  After this we had to sit and wait for about an hour before the scan would take place.  The scan itself took about 45 minutes then we could leave, there was no special after care advice, we could simply carry on as before.

It seems so long ago, yet it is only just over 3 weeks ago since we learned of David’s diagnosis on 4^th March.  Since then we’ve kind of been in limbo – we know that there’s this nasty presence, just lurking in David’s body and making him feel lethargic and lifeless and making our hearts break.  We’re told how well we’re coping.  The reality is we can’t go around crying all the time.  That’s not to say that I haven’t done this.  I feel like I’ve cried more in this last 3 weeks that I’ve cried in my whole life.  It’s good to cry, the release makes you feel better, but it’s draining as it sucks the energy from your body, makes your eyes heavy and your heart heavier.  There does come a time though, when the tears begin to dry up.  It’s not because you feel any better, it’s just that you learn to deal with what you’ve learnt. 

“there’s no condition that man cannot learn to deal with”

I like quotes, and that was a quote on my calendar from a week or two ago – it seemed almost to have been written for me. 

5^th March we went for a CT Scan, 6^th March back to the same hospital for a biopsy and yet more blood tests.  The doctor was very helpful and explained to us that it would be easier for him but less good for David if he could take a biopsy from David’s neck.  He quickly palpated the area and then used his ultrasound machine to check around David’s neck.  He found a small node of no consequence on David’s thyroid.  Strike one for the good guys – it was better news for us, as if the cancer had spread to David’s neck it was not going to be good news.  At this stage, the doctor placed films of David’s CT scan onto his light box and we saw for the first time the clear evidence of the tumour on David’s lung, as well as seeing the tumours on the his ribs.  Whilst it was horrifying to see this, it was also interesting in a gruesome kind of way.  David’s many years of hard work in the gym were clear as the specialist pointed out the impressive bulk of muscle mass around the shoulders and back. 

The specialist to cleanse the area had to paint David’s back with an iodine like solution – to lighten the mood we joked that perhaps he shouldn’t give up his day job to work as a tan artist!  I think this helped as little as it took David’s mind away a little bit from the enormous needle that was to take the biopsy.  Due to where the cancer was, the specialist had to try and reach under the scapula to do the biopsy, to do this, David had to hold his arm across his chest to open up the area.  The area had been numbed a little before this, so although David could feel the needle poking around inside, it wasn’t actually as painful as he thought it might have been.  Two samples were taken ready to be tested.  We got to see the samples before we left, as they came direct from the bone, they were like very small white worms.  Normally, it would be very difficult and indeed painful to take a biopsy from the bone, but due to the damage from the tumour on the ribs, the bone tissue was very soft and weakened.

We expected having done what seemed like every test possible that we would get a full prognosis at our next meeting with the specialist on 11^th March – unfortunately it was still too early and more tests needed to be done.  We were bitterly disappointed and also upset.  All we were told was that some radiotherapy could be done to help alleviate the pain and that would probably been about another week away.  Our shock and horror must have been evident.

Just a week since the diagnosis, many things had happened.  David has started taking morphine for pain relief.  It was good and bad all at the same time.  The morphine took the pain away and enabled David to get sleep – GOOD, but gave you constipation and sickness at the same time – BAD.

We mentioned previously that David had lost his voice whilst we were on holiday; initially there was just nothing there.  He could hardly whisper, it was super quiet.  We initially dismissed this as nothing serious, but after it didn’t come back we organised to see an ENT specialist.  We saw him on 12^th March.  The specialist was really nice, someone who made you feel like you really liked him before he said anything.  He looked very cheerful, smiled a lot and just had a nice manner.  This all helped as this made our consultation go all the more smooth, even though what he had to say wasn’t what he had hoped to hear.  The tumour was pressing on the nerves to the vocal cords. 

He got David to do a couple of exercises making “eeee” noises then used a mini camera to look at David’s vocal cords.  From this examination he could see that David’s left vocal cord wasn’t moving and although David’s voice was now considerably stronger than it had been when he first lost it, the lack of movement in the vocal cord was a problem.  The right vocal cord had now compensated for the left hence the improvement in voice. A procedure was outlined which might possibly improve the quality of David’s voice but he felt the voice wouldn’t ever go back to what it was.  I asked if the tumour shrank, would the voice return.  He said that he couldn’t rule it out, but that he was doubtful.  Although this all sounded quite depressing, he was very upbeat and said he’d do all he could to help.  He then also went on to explain more about the medications David was using and was in general a kind ear to listen to our woes.

On our way to the ENT session that morning we had received a telephone call asking us to go for Radiotherapy planning that afternoon.  At that session David was tattooed and marked with indelible ink so that each subsequent radiotherapy session the rays were aimed at exactly the same spot.  The radiotherapy would begin the following day.  The radiotherapy was palliative only, which meant that it was only to give pain relief rather than to “cure” the cancer. 

We went on the 13^th, 14^th, 17^th, 18^th and 19^th for radiotherapy sessions.  They didn’t last long.  A minute and a half on the front and then the same on the back – over and done very quickly.  All the nurses were very friendly and we met some lovely people who also had cancer or were supporting someone with cancer.  As a result of the radiotherapy, David’s pain decreased and he was able to reduce his morphine does.  However, the radiotherapy made David overwhelmingly tired and I began to feel like I was living on my own, or with a ghost.  When David was awake, he wasn’t saying anything and sitting in silence.  This was extremely difficult.  I was still grieving for David’s lost health and the future that was now uncertain.  I still am grieving for those things.  I probably always will, but I’ll have to come to terms with that. 

Finally on 14^th March we met a new specialist who appeared to have a more positive outlook and whilst he still couldn’t pin down the primary cancer his thoughts gave us more peace of mind than we had previously.  He requested more tests, a Renogram – that would give us an indication of how well David’s kidneys were performing and whether he would be able to go through chemotherapy.  He also wanted a PET Scan – which could show a little clearer if the cancer had spread to any where else and I’m also guessing that it might give an indication of a primary.

15^th March we went out to a friends for dinner, it hadn’t been a good day, the effects of radiotherapy were showing on David and he was experiencing nausea.  Unfortunately the meal made David quite ill and rather down hearted.  We didn’t realise initially but David’s taste buds would change dramatically.  That night taught us three things – one, was that garlic, whilst being a friend to our heart and circulatory system, was no long a friend to David as it caused waves of sickness.  Second was that oily dressings were also a no go area. The final thing we learnt was perhaps one of the worst for David.  Wine was no longer a pleasure for him, it was now tasting very acidic and unpleasant to drink.  One of life’s pleasures had been taken away with that 6 letter word and the catalogue of medicines which he now had to take.  It seemed hard to think that just 6 months previously, he took no medicines at all and now he was popping pills just to try and live a comfortable pain free life.

The Renogram was scheduled for 19^th March and the attendants told us that it would probably take around an hour to complete as most people needed to have a couple of injections.  We got there in good time expecting to be there for the duration.  Thankfully the renogram only took about 25 minutes, David’s kidneys were draining properly and as such the test was cut short – some better news at last!

This brings us up to 31^st March, the PET scan.  We had to go to a different hospital for this test and parking was something of a joke.  I had to drop David off and then park in the furthest, darkest area of the hospital campus possible then do a mad dash to get back to see David before his scan started.  I only just made it as he had just been called through as I raced in through the door.  We’d both been worrying about the PET scan as David had to lie very still on his back whilst the scan was done – this would normally be very difficult due to the pain he was experiencing.  Thankfully a friend of ours who works in Oncology had been able to organise a sedative to help David relax whilst the scan was done.  When he went for his scan another radioactive dose was given to David and he then had to wait for approximately 45 minutes on his own whilst the substance took effect.  Apparently this substance was at it’s most radioactive during this timescale so even the nurses vacated the room and left him sitting there on his own.  He says that he made some crack about being green and glowing – of course the nurse said that she wished she had a pound for every time someone had said that.  I guess she could have began her own retirement fund.  Then after that the scan took about an hour.  I’ve given a link below with further information on the PET scan.

The results of the PET scan should be available to the Specialist after 48 hours, so I organised the next appointment with the specialist for Friday 4^th April around lunchtime.

That’s all folks!