After last Thursday's bad news, we have been keeping an even closer eye on Steve's condition hoping that it would improve a little now that he's stopped taking the trial drug AZD0424.
His stomach is not churning to the same extent as it was before, although it's still not "normal". There's been no noticeable change in respect of hair loss/regrowth. The fatigue continues - he feels washed out and drained; it's a big effort to get going in the morning and keep going over the course of the day. I often notice that he has dropped off to sleep when sitting quietly or watching TV. He's sleeping now, as I type.....
Although his appetite has improved, he continues to lose weight; now down to 56 kilos (about 8 stone 11 lbs) with his clothes on. Never one to carry much spare flesh, the body in the mirror is not the one he is used to seeing, he's so thin. He's frightened that he's wasting away...
We had both been hoping to see a noticeable improvement in all these respects, but perhaps we have been expecting too much, too soon - after all, it's only been eight days since the last dose and he had taken the trial drug every day for 44 days up until 13 November. I imagine there's still a lot of it in his system.
But other things are coming together. On Monday, we had a long session with the GP - ironically, the same doctor who told him to go away and come back in a fortnight if he still felt unwell when he first went to the surgery in 2009 complaining of the symptoms of which later led to the mesothelioma diagnosis. This time around, she could not have been more helpful and supportive. As a result we know have the start of a care plan coming together....
Taking paracetamol in addition to the codeine seems to be keeping the pain under control. The doctor has prescribed other medication to deal with constipation - a side effect of the pain relief medication. She has also requested blood tests to have a "baseline" against which Steve's condition can be monitored in the future. That will happen next Monday.
We discussed what to do if Steve has a serious problem with pain or breathing in the night or at weekends. The answer was to phone the surgery in the first instance. His medical file has been flagged up as a vulnerable person, so if we need to use the out-of-hours service, the on-call doctor will be alerted to his particular circumstances.
After a couple of false starts, the GP has completed a form which has enabled his application for a disabled parking permit to be fast-tracked. The Blue Badge Team tell us that it's at the printers so should be with us shortly. That's a huge relief; we have had to leave the car several streets away on a number of occasions recently due to on-street parking pressure close to home. With a Blue Badge, we will be able to leave it on yellow lines opposite the house without fear of getting a parking ticket if there is no space available in the residents bays.
The GP has also completed a DS1500 form. This is used to fast-track applications for benefits such as attendance allowance for people who are terminally ill. Steve's had one twice before, once on diagnosis and one a few years later, but we have not needed to use it as he's been feeling good for five years or so. Sadly, that's no longer the case, so it's good to have it for when we need to use it....
The GP has been in touch with the Community Care Team (aka Macmillan nurses) at Sobell House, the hospice next to the Churchill Cancer Centre. We have an appointment to visit in a couple of weeks time to meet the team and find out more about the services they offer. We also know that we can drop into the Maggies Cancer Advice Centre close by, if we need other sorts of support.
More appointments have now come through, one in the Radiotherapy Clinic to discuss zapping the lump on Steve's chest before it gets any bigger and causes more pain, and another with Dr T, Steve's oncology consultant, to talk about whether he has any other treatment options (apart from radiotherapy to the lump) and, if so, what they involve. Although it won't be easy, Steve needs to have this conversation so he knows where he is now, can think about the next stage of the journey and can decide what feels right for him.
At the moment, I don't think he can contemplate more chemo, he feels so weak. He's already taken part in two drug trials this year without any personal benefit, just horrible side effects. Whether he will feel up to having another go in the New Year (assuming he is eligible for a trial that is recruiting) only time will tell. In any event, we have to go back to the Early Phase Clinical Trial Unit in mid-December for the four week post-trial interview/check up, so maybe we can find out then if anything suitable is in the pipeline.
Strange to think that only eight short weeks ago we were in Heidelberg, exploring the old town on foot and enjoying the Heidelberg Herbst festival in the company of some of our wonderful photography friends. The rate of Steve's deterioration since then, especially over the last few weeks, has been alarming. However, we have felt very supported and loved by all your messages of support and this has helped us enormously, even though we have yet to reply to you individually...Thank you, thank you, thank you.
Last but not least, if you are a regular reader of the blog, you will know that over the last five years and a half we have also been supported by the Meso Warriors on Facebook, including a wonderful lady called Debbie Brewer who lost her battle with mesothelioma in June 2013. This weekend there is a party to celebrate the 18th birthday of Kieran, Debbie's youngest son.
Kieran, your mum would have been so very proud of you and your achievements, as are we and all the warriors. Sending you a big hug from us. Have fun with the warriors at the party tomorrow night. So sorry we can't be there in the flesh, but we will raise a glass to you instead!
His stomach is not churning to the same extent as it was before, although it's still not "normal". There's been no noticeable change in respect of hair loss/regrowth. The fatigue continues - he feels washed out and drained; it's a big effort to get going in the morning and keep going over the course of the day. I often notice that he has dropped off to sleep when sitting quietly or watching TV. He's sleeping now, as I type.....
Although his appetite has improved, he continues to lose weight; now down to 56 kilos (about 8 stone 11 lbs) with his clothes on. Never one to carry much spare flesh, the body in the mirror is not the one he is used to seeing, he's so thin. He's frightened that he's wasting away...
We had both been hoping to see a noticeable improvement in all these respects, but perhaps we have been expecting too much, too soon - after all, it's only been eight days since the last dose and he had taken the trial drug every day for 44 days up until 13 November. I imagine there's still a lot of it in his system.
But other things are coming together. On Monday, we had a long session with the GP - ironically, the same doctor who told him to go away and come back in a fortnight if he still felt unwell when he first went to the surgery in 2009 complaining of the symptoms of which later led to the mesothelioma diagnosis. This time around, she could not have been more helpful and supportive. As a result we know have the start of a care plan coming together....
Taking paracetamol in addition to the codeine seems to be keeping the pain under control. The doctor has prescribed other medication to deal with constipation - a side effect of the pain relief medication. She has also requested blood tests to have a "baseline" against which Steve's condition can be monitored in the future. That will happen next Monday.
We discussed what to do if Steve has a serious problem with pain or breathing in the night or at weekends. The answer was to phone the surgery in the first instance. His medical file has been flagged up as a vulnerable person, so if we need to use the out-of-hours service, the on-call doctor will be alerted to his particular circumstances.
After a couple of false starts, the GP has completed a form which has enabled his application for a disabled parking permit to be fast-tracked. The Blue Badge Team tell us that it's at the printers so should be with us shortly. That's a huge relief; we have had to leave the car several streets away on a number of occasions recently due to on-street parking pressure close to home. With a Blue Badge, we will be able to leave it on yellow lines opposite the house without fear of getting a parking ticket if there is no space available in the residents bays.
The GP has also completed a DS1500 form. This is used to fast-track applications for benefits such as attendance allowance for people who are terminally ill. Steve's had one twice before, once on diagnosis and one a few years later, but we have not needed to use it as he's been feeling good for five years or so. Sadly, that's no longer the case, so it's good to have it for when we need to use it....
The GP has been in touch with the Community Care Team (aka Macmillan nurses) at Sobell House, the hospice next to the Churchill Cancer Centre. We have an appointment to visit in a couple of weeks time to meet the team and find out more about the services they offer. We also know that we can drop into the Maggies Cancer Advice Centre close by, if we need other sorts of support.
More appointments have now come through, one in the Radiotherapy Clinic to discuss zapping the lump on Steve's chest before it gets any bigger and causes more pain, and another with Dr T, Steve's oncology consultant, to talk about whether he has any other treatment options (apart from radiotherapy to the lump) and, if so, what they involve. Although it won't be easy, Steve needs to have this conversation so he knows where he is now, can think about the next stage of the journey and can decide what feels right for him.
At the moment, I don't think he can contemplate more chemo, he feels so weak. He's already taken part in two drug trials this year without any personal benefit, just horrible side effects. Whether he will feel up to having another go in the New Year (assuming he is eligible for a trial that is recruiting) only time will tell. In any event, we have to go back to the Early Phase Clinical Trial Unit in mid-December for the four week post-trial interview/check up, so maybe we can find out then if anything suitable is in the pipeline.
Strange to think that only eight short weeks ago we were in Heidelberg, exploring the old town on foot and enjoying the Heidelberg Herbst festival in the company of some of our wonderful photography friends. The rate of Steve's deterioration since then, especially over the last few weeks, has been alarming. However, we have felt very supported and loved by all your messages of support and this has helped us enormously, even though we have yet to reply to you individually...Thank you, thank you, thank you.
Last but not least, if you are a regular reader of the blog, you will know that over the last five years and a half we have also been supported by the Meso Warriors on Facebook, including a wonderful lady called Debbie Brewer who lost her battle with mesothelioma in June 2013. This weekend there is a party to celebrate the 18th birthday of Kieran, Debbie's youngest son.
Kieran, your mum would have been so very proud of you and your achievements, as are we and all the warriors. Sending you a big hug from us. Have fun with the warriors at the party tomorrow night. So sorry we can't be there in the flesh, but we will raise a glass to you instead!
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