From time to time I visit Guernsey in the Channel Islands for work. At the end of June, instead of travelling alone, Steve joined me, we extended the visit and managed to enjoy some pleasure as well as business...
....A "Puffin Patrol" boat trip, when we saw lots of puffins, not to mention a host of other sea birds (but really needed a good telephoto lens to make the most of the photo opportunities)...
.... took the ferry to Herm, where we walked across the island to Shell Beach and treated ourselves to an ice cream in the shade, before heading back to the village for lunch at the pub then taking the ferry back to St Peter Port...
...going around the Island on "The Guernsey Vaeux" local bus service, stopping off on the west coast for tea and a cake sitting at one of the beach kiosk picnic tables...
...spending a very enjoyable evening with a friend and work colleague , Jonathan, whose visit to Guernsey overlapped with ours..
After a quick turnaround on Saturday, we headed off to London last Sunday for another meet up at Tate Modern, this time with our dear cyber friend Linda Reinstein, CEO and co-founder of the Asbestos Diseases Awareness Organisation (ADAO) and Global Ban Asbestos Network (GBAN) who was visiting the UK for a conference at the London Hazards Centre which took place on Action Mesothelioma Day while we were away in Guernsey.
Linda is one of the the most amazing, committed, energetic and dedicated people we know. She often signs off her messages to me with a request to kiss Steve for her with bright red lipstick. On Sunday, she delivered that kiss in person! So very lovely to meet up with you in the flesh at long last, Linda! xox
Since then we have been catching up at home, unpacking and sorting ourselves out; going through the backlog of e-mails; weeding, dead-heading and enjoying the sunshine in the garden; working on the "business" element of our trip to Guernsey; Steve has had his scan. We also celebrated the birth of Reggie, the first born of Emily and Nick whose wedding we went to this time last year, and some good news on the photography front, with one picture shortlisted for the RPS International Print Exhibition, another given a silver award in PX3 (Paris Photo Prize) and a third being runner up in the Pollux Awards, as well as several Hon. Mentions in the Julia Margaret Cameron Awards for Women Photographers.
In between all this, we've been dipping into and out of the sports fest happening on TV this week - the F1 British Grand Prix, Le Tour, The Ashes and Wimbledon.
And then suddenly, it's upon us.
Assessment Day.
Tomorrow.
It will be the first time Steve has seen a doctor (as opposed to the Meso Nurse Specialist) since last December when he was advised that he only had a small number of months to live. So it should be interesting when the doctor sees his weight gain, tan, hair ....
....If truth be told, the prospect is also a bit scary, as we'll get some idea of the rate of disease progression since Steve came off the last drug trial in November 2014 and had radiotherapy in December to the lump where the cancer has grown through the chest wall and to his abdomen, where another small lump had appeared, possibly related to the metastasis in his liver.
Plus, I'm concerned about a bout of catarrh he's had since flying back from Malaga which makes him cough in the morning, and yesterday made him wheeze quite noticeably. Then there's the occasional pain in his right shoulder which Steve insists is a pulled muscle but I have a niggling concern that it may be due to tumour growth pressing on a nerve. That's the problem with mesothelioma.... every little cough, ache and pain and you think to yourself is this the cancer taking off, when its probably something very minor and innocent...
We'll find out soon enough. Tomorrow we'll know whether the doctor thinks he's now well enough to take part in another clinical trial, cough and shoulder pain notwithstanding and, if so, if there is a suitable trial currently recruiting in Oxford (in particular, the Vinorelbine trial which doesn't appear to be open yet) or elsewhere. Assuming he's well enough, Steve will then have to decide whether he's ready to have another go at treatment after being knocked back so badly by the two clinical trials he took part in last year.
As usual, I have been doing the homework with a list of questions and other possible clinical trials to discuss, including the ADI-PEG 20 with pemetrexed and cisplatin Phase 1 study at Barts in London and another Phase 1 stem cell dose escalation study of VS-5584 in combination with VS-6063, currently recruiting in Leicester and at the Royal Marsden.
I would also like to find out more about two drugs that have been approved for treating another type of lung cancer - non-small cell lung cancer (NSCLC) - under the Early Access to Medicines Scheme (EAMS). In particular, Nivolumab immunotherapy and Zykadia which has been designated a Promising Innovation Medicine under EAMS.
Plus, in 2013, the NHS announced that it had commissioned SABR (Stereotactic Ablative Body Radiotherapy) for NSCLC. I think it would be helpful to know whether this very intense, targeted form of radiotherapy which spares healthy tissue might work mesothelioma and, if so, where we can find out more.
OK...I know I'm clutching at straws...but what else is there when there is no cure, disease progresses after the gold standard treatment of pemetrexed and either cisplatin or carboplatin and other trial drugs, and Steve is excluded from the very promising immunotherapy trials because of his history of autoimmune disease (arthritis).
However... it might all be academic if the doctor doesn't think Steve is fit enough to take part, and/or Steve can't stomach the thought of more debilitating side effects. We shall see...
As usual again, the calendar is more or less empty from now on, apart from non-use related medical appointments, family visits and one work commitment for me, date still to be confirmed. Whether it will be filled with more hospital visits or social things (or will remain on hold while decisions are made) depends on what happens tomorrow afternoon. Not so much "scanxiety", more about keeping options open and avoiding clashes or letting people down....
....I let you know what happens in due course...
....A "Puffin Patrol" boat trip, when we saw lots of puffins, not to mention a host of other sea birds (but really needed a good telephoto lens to make the most of the photo opportunities)...
.... took the ferry to Herm, where we walked across the island to Shell Beach and treated ourselves to an ice cream in the shade, before heading back to the village for lunch at the pub then taking the ferry back to St Peter Port...
...going around the Island on "The Guernsey Vaeux" local bus service, stopping off on the west coast for tea and a cake sitting at one of the beach kiosk picnic tables...
...spending a very enjoyable evening with a friend and work colleague , Jonathan, whose visit to Guernsey overlapped with ours..
After a quick turnaround on Saturday, we headed off to London last Sunday for another meet up at Tate Modern, this time with our dear cyber friend Linda Reinstein, CEO and co-founder of the Asbestos Diseases Awareness Organisation (ADAO) and Global Ban Asbestos Network (GBAN) who was visiting the UK for a conference at the London Hazards Centre which took place on Action Mesothelioma Day while we were away in Guernsey.
Linda is one of the the most amazing, committed, energetic and dedicated people we know. She often signs off her messages to me with a request to kiss Steve for her with bright red lipstick. On Sunday, she delivered that kiss in person! So very lovely to meet up with you in the flesh at long last, Linda! xox
Since then we have been catching up at home, unpacking and sorting ourselves out; going through the backlog of e-mails; weeding, dead-heading and enjoying the sunshine in the garden; working on the "business" element of our trip to Guernsey; Steve has had his scan. We also celebrated the birth of Reggie, the first born of Emily and Nick whose wedding we went to this time last year, and some good news on the photography front, with one picture shortlisted for the RPS International Print Exhibition, another given a silver award in PX3 (Paris Photo Prize) and a third being runner up in the Pollux Awards, as well as several Hon. Mentions in the Julia Margaret Cameron Awards for Women Photographers.
In between all this, we've been dipping into and out of the sports fest happening on TV this week - the F1 British Grand Prix, Le Tour, The Ashes and Wimbledon.
And then suddenly, it's upon us.
Assessment Day.
Tomorrow.
It will be the first time Steve has seen a doctor (as opposed to the Meso Nurse Specialist) since last December when he was advised that he only had a small number of months to live. So it should be interesting when the doctor sees his weight gain, tan, hair ....
....If truth be told, the prospect is also a bit scary, as we'll get some idea of the rate of disease progression since Steve came off the last drug trial in November 2014 and had radiotherapy in December to the lump where the cancer has grown through the chest wall and to his abdomen, where another small lump had appeared, possibly related to the metastasis in his liver.
Plus, I'm concerned about a bout of catarrh he's had since flying back from Malaga which makes him cough in the morning, and yesterday made him wheeze quite noticeably. Then there's the occasional pain in his right shoulder which Steve insists is a pulled muscle but I have a niggling concern that it may be due to tumour growth pressing on a nerve. That's the problem with mesothelioma.... every little cough, ache and pain and you think to yourself is this the cancer taking off, when its probably something very minor and innocent...
We'll find out soon enough. Tomorrow we'll know whether the doctor thinks he's now well enough to take part in another clinical trial, cough and shoulder pain notwithstanding and, if so, if there is a suitable trial currently recruiting in Oxford (in particular, the Vinorelbine trial which doesn't appear to be open yet) or elsewhere. Assuming he's well enough, Steve will then have to decide whether he's ready to have another go at treatment after being knocked back so badly by the two clinical trials he took part in last year.
As usual, I have been doing the homework with a list of questions and other possible clinical trials to discuss, including the ADI-PEG 20 with pemetrexed and cisplatin Phase 1 study at Barts in London and another Phase 1 stem cell dose escalation study of VS-5584 in combination with VS-6063, currently recruiting in Leicester and at the Royal Marsden.
I would also like to find out more about two drugs that have been approved for treating another type of lung cancer - non-small cell lung cancer (NSCLC) - under the Early Access to Medicines Scheme (EAMS). In particular, Nivolumab immunotherapy and Zykadia which has been designated a Promising Innovation Medicine under EAMS.
Plus, in 2013, the NHS announced that it had commissioned SABR (Stereotactic Ablative Body Radiotherapy) for NSCLC. I think it would be helpful to know whether this very intense, targeted form of radiotherapy which spares healthy tissue might work mesothelioma and, if so, where we can find out more.
OK...I know I'm clutching at straws...but what else is there when there is no cure, disease progresses after the gold standard treatment of pemetrexed and either cisplatin or carboplatin and other trial drugs, and Steve is excluded from the very promising immunotherapy trials because of his history of autoimmune disease (arthritis).
However... it might all be academic if the doctor doesn't think Steve is fit enough to take part, and/or Steve can't stomach the thought of more debilitating side effects. We shall see...
As usual again, the calendar is more or less empty from now on, apart from non-use related medical appointments, family visits and one work commitment for me, date still to be confirmed. Whether it will be filled with more hospital visits or social things (or will remain on hold while decisions are made) depends on what happens tomorrow afternoon. Not so much "scanxiety", more about keeping options open and avoiding clashes or letting people down....
....I let you know what happens in due course...
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