Just had the dreaded letter through confirming the next PET scan on 31st Jan at 11.30am . This one takes quite a few hours although they have been very efficient in the past about trying to get you through everything as easily as possible. Then we have the appointment on the 3rd Feb to discuss the results so not too long to wait with the usual sword of Damocles hanging over us.
So 20 days to go, bit too early for it to be at the forefront of our minds, but give us another two weeks and we will both be entering the anxious zone.
Given the last one at the end of November was compromised by the pneumonia, we don’t know if the hot spots were due to significant progression of the cancer or a result of the pneumonia infection. We know the infection has cleared up , so this one will be a very clear indicator of what is going on.
Will soon be entering the hope for the best, prepare for the worst run up, which seems to involve your brain doing lots of pre-prep work on imagining all the really bad outcomes and practicing on how you’ll deal with it, whilst your heart and all the non logical bits refuse to believe anything bad can happen.
I have learnt that best not to do anything too tricky at work in the last week of the countdown , as my decisions definitely can’t be trusted.
good weather expected on Friday so we are going to head off to Stokes at Stockbridge for lunch , which we have promised ourselves for over 2 months now but it had to be delayed due to the pneumonia, really looking forward to it. It’s a lovely village , with art galleries , restaurants and craft shops, so loads to explore.
Winter now well and truly with us – spent far too long at the tube station this morning so took me ages to warm up. Cabin fever definitely setting in with Ray – having been warned that cold air is very bad for his lungs, it means we are really limited on getting out and about. Found out today it could take a couple of months for his lungs to clear all the pneumonia , so told him he’d have to take up jigsaws!! Alternatively could look at tortoise impersonation and hibernate – personally snuggling under the duvet and emerging around March awakening to daffodils sounds a great option to me.
My two cats are now permanently glued to the top of the radiator-
Slightly too optimistic yesterday with our crackle free day , as today we had a slight return of the crackle , but very much less than before. He also had one major coughing fit but again nothing like the hacking cough at the start , when he would literally be doubled over- so fingers crossed the antibiotics end on Saturday and then see how he gets on. Think the major concern is catching something else, so I am becoming equally wary about who I come into contact with , through work, travel etc – would be nice if I could just wrap him up in a big bubble ( with his new jigsaws inside!!)
Not doing at all well today, still no sign of any real improvement in the pneumonia, will be mid way through the course by tomorrow, so had expected a bit more effect by now. On the other hand it hasn’t got any worse, although still has the crackly space dust effect – which is really disconcerting, listening to someone’s lungs crackle
He slept really badly last night, not through coughing, just generally , took ages to get to sleep , then awake at 3.30am, then took a couple of hours to get back to sleep , then very fitful through to around 8.00 am.
I think it is really starting to wear him down, I know he is now thinking maybe it isn’t an infection, maybe it is the meso. Or maybe it is an infection that just won’t respond to treatment and I’ll go downhill really quickly anyway, or maybe its viral and it will just slowly waste me away…. Can tell this is now getting frightening, so no wonder he finds it difficult to sleep.
If no improvement by the weekend, will go and see the GP, although not too sure what they can do other than change the antibiotic. At the moment he isn’t that breathless, talking really brings on a coughing fit though.
Not feeling as though I am much use at the moment other than offering nightly prayers that the infection starts to show some signs of improvement, even something very small would be a help – a really good result would be if the crackles were to stop !! because that is scary.
Not a great day yesterday as the pneumonia didn’t seem to be responding to treatment, the coughing was truly dreadful and we did start to worry he would need to go into hospital. He was also getting very worked up that this was it and it would now be all downhill. The fluid on the lung form the infection, did give a really strange side effect, when breathing out , it sounded as though his mouth was full of popping and cracking- rather like taking space dust.
Would have been really scary, but at least we know what was causing it, apparently crackles is a well known symptom of severe pneumonia. After a worrying day, today has been a little better- the crackling is less noticeable and he feels less breathless, so we are hoping the antibiotics have started to kick in and will be further improvement over the next few days. It doesn’t take much to make us feel more hopeful ( work on very low thresholds these days) so here’s looking to a better end to the week.
Three days into the antibiotics and slight change in that the cough appears to be improving. Although he is still wafting around the house like a Victorian maiden with consumption, pointing out how he needs lots of rest and cups of tea ! As well as pointing out that George Michael is in hospital with his pneumonia – and he hasn’t had lung surgery!
Did drag him out for a short walk along the high street yesterday to take advantage of the sunshine, though it was very windy. Bit limited on going anywhere, with bouts of hacking coughs. This also makes him very sore around his lungs and diaphragm, so although the painkillers are working in general, this is leaving him a bit washed out as his sleeping isn’t too great.
Sporty day yesterday , watching not playing, with the grand-prix and then the tennis. For dinner I made chicken in a mushroom sauce, with mash and savoy cabbage and carrots with butter and nutmeg. My cooking has definitely come a long way over the year , although the kitchen still looks like a bomb has hit it afterwards.
Loads to do in the house as it is looking a bit messy ( even by my standards) plus a busy three days due at work, then before you know it we are planning when to put up the Xmas tree, bought the christmas cards yesterday, so it is beginning to feel a little bit christmassy.
Devastating news about the young Wales manager Gary Speed, it seems crazy to read about this when so many meso warriers are trying so hard to stay alive, his family must be distraught.