Winge alert....
For various reasons, this last week of Cycle 1 of the AZ0424 clinical trial has been a bit of a downer, so if you are here expecting all things positive probably best look away now and return when we have bounced back (which we will).
The doctor's remark last Tuesday that the lump on Steve's chest is probably the cancer growing has overshadowed the week. Not the sort of thing you want to hear when on a drug trial which you hope will have the opposite effect.
Although we have seen it on scans and it has knocked us for six emotionally, up until now Steve's mesothelioma has not impacted on him physically to any significant degree. However, the lump is different. You can see it and touch it. Thankfully it doesn't hurt. This makes us question whether it is the cancer growing, or something else...not that we have been able to identify what else might cause a lump of this size which is hard to the touch and not malleable. If the doctor is right, then we now have very tangible evidence - and a constant reminder - of his disease (as if we needed one).
The other big downer is hair loss - a side effect of the trial drug. The hair on Steve's head started coming out in odd strands last weekend, but is now shedding freely. He had put off washing his hair, but when he could leave it no longer the result was what he feared - lots of hairs including large clumps left in the bottom of the bath. His eyebrows (a very expressive part of his face) are also thinning. There are hairs, hairs everywhere....
I'm sure Steve will come to terms with it, as so many others have had to when loosing their hair as a result of cancer treatment. However, it is taking time to adjust to his new look. Time to go shopping for hats? The hair loss is bound to get worse before it gets better. The advice we have found online about coping with the impact of cancer-related hair loss on self-esteem seems to be aimed exclusively at women rather than men, which wound Steve up a bit. It's a people thing not a gender thing, isn't it?
The other side effects of taking part in the clinical trial are ongoing, including tiredness and effect on his digestive system. In terms of fatigue, mornings are generally not too bad (relatively speaking). However, from lunchtime onwards, Steve feels lethargic at best. More often than not, he dozing or sleeping...In terms of his digestive system, the loud stomach gurgles continue but now accompanied by a build up of gas which makes him feel bloated and uncomfortable. This is now affecting his appetite, which is a concern given his recent weight loss.
Then there is the cough....Not all the time, but when he has a coughing session, it often makes him feel sick. The bucket is back beside the bed for emergencies.
The significant deterioration in Steve's mum's health has been another cause for family concern. She is now receiving 24 hour nursing care in Bristol. Every time the phone rings, it flashes across our minds whether this is the call from the nursing home we are preparing ourselves for...
Naturally, we would like to visit her more often and spend more time with her. However, it's difficult now Steve is on a drug trial with frequent hospital appointments plus the side effects of the trial drug, including fatigue which makes long sessions behind the wheel not such a good idea.
Now the start of Cycle 2 of the drug trial is imminent, the thought of three consecutive days in hospital does not fill us with joy. Mentally, it's looming large even though only one visit is scheduled to be a long 12-13 hour shift...
Overarching all of these concerns is a mix of feelings about future treatment options. Immunotherapy is an area of clinical research which is proving very promising for people with mesothelioma, including fellow meso warrior Mavis who is doing brilliantly on her drug trial. Well done Mavis! We are thrilled to read of significant tumour shrinkage and hope that many more people will be able to benefit from taking part in trials of this immunotherapy drug and similar ones.
However, every time I research immunotherapy trials, my heart sinks when I read that people with a medical history of autoimmune disease - including arthritis, like Steve - are specifically excluded from taking part. It feels like someone is shining a torch showing you the way ahead out of a long dark tunnel, but at the same time putting a barrier in the way to prevent you heading in that direction. Heartbreaking and frustrating.....
OK. Rant over. It hasn't all been bad....
We escaped the worst of the weather when the remains of hurricane Gonzalo crossed the UK at the start of the week....
To our amazement, some of the plants in the garden are flowering, whilst others are holding on to their blooms. Colour in the garden this time of the year is a bonus we weren't expecting....
Steve and I were delighted that our photos were included in a feature about our photography friends get-together in Heidelberg last month, which was published in a German newspaper. Thank you Isa for setting it up!
Steve's picture of other photographers is bottom left, mine - an architectural abstract - is bottom right (ignore the credits - the journalist didn't get it quite right!)
We seemed to have survived our flu jabs with minimal side effects, so we are set up to tackle the worst of the winter illnesses although hoping it won't be necessary.
I'm hoping that by my next post, the good news will outweigh the downside. Life is a bit of a roller coaster at the best of times. We will be on the up again soon I hope. Big hug to all the meso warriors around the world, especially those on the down slope of the roller coaster x
For various reasons, this last week of Cycle 1 of the AZ0424 clinical trial has been a bit of a downer, so if you are here expecting all things positive probably best look away now and return when we have bounced back (which we will).
The doctor's remark last Tuesday that the lump on Steve's chest is probably the cancer growing has overshadowed the week. Not the sort of thing you want to hear when on a drug trial which you hope will have the opposite effect.
Although we have seen it on scans and it has knocked us for six emotionally, up until now Steve's mesothelioma has not impacted on him physically to any significant degree. However, the lump is different. You can see it and touch it. Thankfully it doesn't hurt. This makes us question whether it is the cancer growing, or something else...not that we have been able to identify what else might cause a lump of this size which is hard to the touch and not malleable. If the doctor is right, then we now have very tangible evidence - and a constant reminder - of his disease (as if we needed one).
The other big downer is hair loss - a side effect of the trial drug. The hair on Steve's head started coming out in odd strands last weekend, but is now shedding freely. He had put off washing his hair, but when he could leave it no longer the result was what he feared - lots of hairs including large clumps left in the bottom of the bath. His eyebrows (a very expressive part of his face) are also thinning. There are hairs, hairs everywhere....
I'm sure Steve will come to terms with it, as so many others have had to when loosing their hair as a result of cancer treatment. However, it is taking time to adjust to his new look. Time to go shopping for hats? The hair loss is bound to get worse before it gets better. The advice we have found online about coping with the impact of cancer-related hair loss on self-esteem seems to be aimed exclusively at women rather than men, which wound Steve up a bit. It's a people thing not a gender thing, isn't it?
The other side effects of taking part in the clinical trial are ongoing, including tiredness and effect on his digestive system. In terms of fatigue, mornings are generally not too bad (relatively speaking). However, from lunchtime onwards, Steve feels lethargic at best. More often than not, he dozing or sleeping...In terms of his digestive system, the loud stomach gurgles continue but now accompanied by a build up of gas which makes him feel bloated and uncomfortable. This is now affecting his appetite, which is a concern given his recent weight loss.
Then there is the cough....Not all the time, but when he has a coughing session, it often makes him feel sick. The bucket is back beside the bed for emergencies.
The significant deterioration in Steve's mum's health has been another cause for family concern. She is now receiving 24 hour nursing care in Bristol. Every time the phone rings, it flashes across our minds whether this is the call from the nursing home we are preparing ourselves for...
Naturally, we would like to visit her more often and spend more time with her. However, it's difficult now Steve is on a drug trial with frequent hospital appointments plus the side effects of the trial drug, including fatigue which makes long sessions behind the wheel not such a good idea.
Now the start of Cycle 2 of the drug trial is imminent, the thought of three consecutive days in hospital does not fill us with joy. Mentally, it's looming large even though only one visit is scheduled to be a long 12-13 hour shift...
Overarching all of these concerns is a mix of feelings about future treatment options. Immunotherapy is an area of clinical research which is proving very promising for people with mesothelioma, including fellow meso warrior Mavis who is doing brilliantly on her drug trial. Well done Mavis! We are thrilled to read of significant tumour shrinkage and hope that many more people will be able to benefit from taking part in trials of this immunotherapy drug and similar ones.
However, every time I research immunotherapy trials, my heart sinks when I read that people with a medical history of autoimmune disease - including arthritis, like Steve - are specifically excluded from taking part. It feels like someone is shining a torch showing you the way ahead out of a long dark tunnel, but at the same time putting a barrier in the way to prevent you heading in that direction. Heartbreaking and frustrating.....
OK. Rant over. It hasn't all been bad....
We escaped the worst of the weather when the remains of hurricane Gonzalo crossed the UK at the start of the week....
To our amazement, some of the plants in the garden are flowering, whilst others are holding on to their blooms. Colour in the garden this time of the year is a bonus we weren't expecting....
Steve and I were delighted that our photos were included in a feature about our photography friends get-together in Heidelberg last month, which was published in a German newspaper. Thank you Isa for setting it up!
We seemed to have survived our flu jabs with minimal side effects, so we are set up to tackle the worst of the winter illnesses although hoping it won't be necessary.
I'm hoping that by my next post, the good news will outweigh the downside. Life is a bit of a roller coaster at the best of times. We will be on the up again soon I hope. Big hug to all the meso warriors around the world, especially those on the down slope of the roller coaster x
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