Before you read this, take a deep breath. The news is not good, as we suspected....
It's five years and five months almost to the day since Steve was diagnosed with mesothelioma. Unlike many others in his position, in all that time he has not experienced any significant pain directly related to his cancer - just the occasional twinge. Until Thursday night into Friday morning, when he was woken up by a severe pain in his chest roughly where the lump is growing. Touching it was agony - like being hit by lightning, as he describes it. Paracetamol didn't touch it. Eventually he dropped off to sleep again, and all was well when he woke up...apart from being tired.
However, this was a new development in his meso journey, so after breakfast we phoned the hospital to say that we wanted to see a doctor when we called at the Early Phase Trials Unit later that morning to pick up the capsules missing from his trial drug supply due to an error by Pharmacy (see my last post for the start of that particular saga...)
The green bag with his bottle of capsules was waiting for us in the Trials Unit when we arrived. The trial nurse had taken the precaution of checking that the bottle contained the correct number of capsules. Unbelievably, pharmacy had messed up again. Too many capsules this time!
This might sound funny, but in fact it's very serious. Each time medicine is dispensed by one pharmacist, it's then checked by two others before being given to the patient. In Steve's case, for the third time in a row, the dispenser and two checkers had made a mistake with the number of capsules put in the bottle.
No harm done this time, but as the doctor pointed out, we are on the ball. Others who are distracted or drugged up with pain relief might not notice. The potential consequences are very, very serious. There will be an investigation. Here's hoping lessons will be learned and it doesn't happen again. One mistake is bad enough, but three in a row is unforgivable.
Because he knew we were coming in to talk about the pain as well as collect the remaining trial drug capsules, Dr Ioannis had asked radiology to fast track Steve's scan results. The full detailed report has yet to be written, but the summary was enough for Steve to be taken off the trial there and then. AZD0424 hasn't worked for Steve.
Internally, pleural thickening has increased - not galloping away, but measurable after only six weeks. The lump on his chest is the cancer which has grown through the chest wall and bubbled up on the outside of the rib cage, cracking a rib in the process - the pain Steve felt when lifting a heavy bag of cement back in July, which we thought was a pulled muscle. We had been expecting to hear this news - me for quite a while, Steve only acknowledging it in the last week or two - but it's still a bit of a blow.
The radiologist has also noted a lesion on his liver which has grown since the last scan (when it was too small to measure, and might have been something else) and a another lesion on his liver which did not show up at all on the last scan. This came as a nasty surprise. Not only is the cancer growing, it's spread outside the right lung. This is not the news we wanted to hear.
Obviously, there is no point in Steve finishing the clinical trial. After all the fuss with the pharmacy about being given the wrong number of capsules, we left them on the bed as we walked out of the Unit.
So....what now?
Probably radiotherapy on the lump to see if that will break it down and alleviate the pain, which is probably due to the tumour pressing on a nerve.
Codeine tablets for pain relief. They have not worked - the pain was back last night and the codeine brought no relief - so we will need to ask our GP for something stronger or different. Hoping to be seen as an urgent case on Monday; the first "normal" appointment slot is in two weeks time. That came as a nasty shock too....
A break from any other form of intervention treatment. It will take 6-8 weeks for the trial drug to finally work its way out of Steve's system and this must happen before he would be able to go on any other drug trial.
This news has been a wake up call - as if we needed one. We have decided to use this time to sort things out while Steve is still relatively "well" (seems strange to say that, given what's happened...) Hopefully, over the coming month or two his hair will start growing back, the fatigue will lift, his appetite will return full time and he will put some weight back on....then the neighbours might recognise him again and he will stop thinking of himself as looking like "Gollum" from Lord of the Rings.
We also hope he will be well enough to make the round trip to Bristol to say goodbye to his mum, who is fading fast. I doubt whether she would know who he is, even if she recognised him now he is so thin and lacking hair. However, it would give Steve some peace of mind to see her again, probably for the last time.
We all have those periods in life when it feels like everything that can go wrong, does go wrong. We are certainly having one now. Not surprisingly, we are both physically and emotionally drained. And poor Steve still has the pain to contend with until the right pain relief is found.
Christmas will be low key - we don't have the energy or inclination to design, print and write Christmas cards like we usually do; make or hunt down the perfect present, or write a long newsy letter telling far flung friends what has happened to us in 2014. People will have to rely on the blog to know what's happening health-wise and a charitable donation from us in lieu of sending out cards. Our aim is to minimise stress and strain while Steve recovers from the side effects of the last clinical trial and thinks about where he goes from here.
Without doubt, we are now on the next stage of this long mesothelioma journey. The spread of the cancer has upped the stakes, but this meso warrior is not out of the game yet. We will relax, regroup, recharge the batteries over the next couple of months; enjoy a family Christmas and plot the strategy for the next step of the journey. Then...when we are ready...we will call your bet Leo and raise the stake money. You won't know what's hit you when the radiotherapy starts...and that's just the beginning of the fight back - always assuming Steve wants, and is able, to carry on.
Last but not least, to all our friends in the flesh and in our Facebook groups, thank you, thank you, thank you for all the love, good wishes and messages of support. They bring a tear to the eye, but are very much appreciated. And a big hug to all the meso warriors around the world, whatever stage of the journey you are on xx
It's five years and five months almost to the day since Steve was diagnosed with mesothelioma. Unlike many others in his position, in all that time he has not experienced any significant pain directly related to his cancer - just the occasional twinge. Until Thursday night into Friday morning, when he was woken up by a severe pain in his chest roughly where the lump is growing. Touching it was agony - like being hit by lightning, as he describes it. Paracetamol didn't touch it. Eventually he dropped off to sleep again, and all was well when he woke up...apart from being tired.
However, this was a new development in his meso journey, so after breakfast we phoned the hospital to say that we wanted to see a doctor when we called at the Early Phase Trials Unit later that morning to pick up the capsules missing from his trial drug supply due to an error by Pharmacy (see my last post for the start of that particular saga...)
The green bag with his bottle of capsules was waiting for us in the Trials Unit when we arrived. The trial nurse had taken the precaution of checking that the bottle contained the correct number of capsules. Unbelievably, pharmacy had messed up again. Too many capsules this time!
This might sound funny, but in fact it's very serious. Each time medicine is dispensed by one pharmacist, it's then checked by two others before being given to the patient. In Steve's case, for the third time in a row, the dispenser and two checkers had made a mistake with the number of capsules put in the bottle.
No harm done this time, but as the doctor pointed out, we are on the ball. Others who are distracted or drugged up with pain relief might not notice. The potential consequences are very, very serious. There will be an investigation. Here's hoping lessons will be learned and it doesn't happen again. One mistake is bad enough, but three in a row is unforgivable.
Because he knew we were coming in to talk about the pain as well as collect the remaining trial drug capsules, Dr Ioannis had asked radiology to fast track Steve's scan results. The full detailed report has yet to be written, but the summary was enough for Steve to be taken off the trial there and then. AZD0424 hasn't worked for Steve.
Internally, pleural thickening has increased - not galloping away, but measurable after only six weeks. The lump on his chest is the cancer which has grown through the chest wall and bubbled up on the outside of the rib cage, cracking a rib in the process - the pain Steve felt when lifting a heavy bag of cement back in July, which we thought was a pulled muscle. We had been expecting to hear this news - me for quite a while, Steve only acknowledging it in the last week or two - but it's still a bit of a blow.
The radiologist has also noted a lesion on his liver which has grown since the last scan (when it was too small to measure, and might have been something else) and a another lesion on his liver which did not show up at all on the last scan. This came as a nasty surprise. Not only is the cancer growing, it's spread outside the right lung. This is not the news we wanted to hear.
Obviously, there is no point in Steve finishing the clinical trial. After all the fuss with the pharmacy about being given the wrong number of capsules, we left them on the bed as we walked out of the Unit.
So....what now?
Probably radiotherapy on the lump to see if that will break it down and alleviate the pain, which is probably due to the tumour pressing on a nerve.
Codeine tablets for pain relief. They have not worked - the pain was back last night and the codeine brought no relief - so we will need to ask our GP for something stronger or different. Hoping to be seen as an urgent case on Monday; the first "normal" appointment slot is in two weeks time. That came as a nasty shock too....
A break from any other form of intervention treatment. It will take 6-8 weeks for the trial drug to finally work its way out of Steve's system and this must happen before he would be able to go on any other drug trial.
This news has been a wake up call - as if we needed one. We have decided to use this time to sort things out while Steve is still relatively "well" (seems strange to say that, given what's happened...) Hopefully, over the coming month or two his hair will start growing back, the fatigue will lift, his appetite will return full time and he will put some weight back on....then the neighbours might recognise him again and he will stop thinking of himself as looking like "Gollum" from Lord of the Rings.
We also hope he will be well enough to make the round trip to Bristol to say goodbye to his mum, who is fading fast. I doubt whether she would know who he is, even if she recognised him now he is so thin and lacking hair. However, it would give Steve some peace of mind to see her again, probably for the last time.
We all have those periods in life when it feels like everything that can go wrong, does go wrong. We are certainly having one now. Not surprisingly, we are both physically and emotionally drained. And poor Steve still has the pain to contend with until the right pain relief is found.
Christmas will be low key - we don't have the energy or inclination to design, print and write Christmas cards like we usually do; make or hunt down the perfect present, or write a long newsy letter telling far flung friends what has happened to us in 2014. People will have to rely on the blog to know what's happening health-wise and a charitable donation from us in lieu of sending out cards. Our aim is to minimise stress and strain while Steve recovers from the side effects of the last clinical trial and thinks about where he goes from here.
Without doubt, we are now on the next stage of this long mesothelioma journey. The spread of the cancer has upped the stakes, but this meso warrior is not out of the game yet. We will relax, regroup, recharge the batteries over the next couple of months; enjoy a family Christmas and plot the strategy for the next step of the journey. Then...when we are ready...we will call your bet Leo and raise the stake money. You won't know what's hit you when the radiotherapy starts...and that's just the beginning of the fight back - always assuming Steve wants, and is able, to carry on.
Last but not least, to all our friends in the flesh and in our Facebook groups, thank you, thank you, thank you for all the love, good wishes and messages of support. They bring a tear to the eye, but are very much appreciated. And a big hug to all the meso warriors around the world, whatever stage of the journey you are on xx
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