We went to Hammersmith yesterday, we decided to chance driving and it wasnt too bad. Darrens new specialist is Spainish and looks like aresearcher should, big glasses, very tall and slightly on the nerdy side but his the best so who cares :)
Darrens results are nearly all back. His cancer levels in his blood have dropped quicker than we could ever have hoped for. And now is cancer cells stand at 0.664% which is great as it means its the lowest its ever been since this all started 19 months ago.
We are still waiting for mutation results (checking if Darren is still human)but they should back intime for his next appointment on the 3rd November.
Overall a great results and the new chemo is clearly doing its job.
Wednesday 20 October 2010
Monday 11 October 2010
Change of plans
Darren now has to see the Big man of CML himself as he has requested to see Darren after recieving his notes. We now have to wait another week to see him but hopefully its a good news as if he now has the best man for the job :)
Sunday 10 October 2010
Thursday 7 October 2010
Wednesday 6 October 2010
Well its offical, Lister Hospital sucks!! And so does car insurance
To say the last week has been stressful is an understatement of the year. I have been battling the insurance company who are now saying as Darren was driving the car more than me I shouldnt have been given the policy!! Now saying car is written off but refusing to pay, I have wasted many hours on the phone in tears. Jasmine starts her speech and language group for the next 5 fridays in the town so need my car and also starts her special preschool too (for those that dont know they think shes Autistic too), so yes I had a few choice words for them.
Lister on the otherhand I am used to being terrible now. Darren went for another appointment and we found out that they still havent made the Hammersmith referral. His doc told me he will make it today, and he better as I will be chasing it up with calls tomorrow. Darrens scan appointment didnt arrive so we popped down there on the way out to be told tey had bounced it back as he had the same scan last year!! AND there point was?? So be warned people dont ask Lister for more than one scan a year for the same checks, it must be against the rules, weirdos.
Darren is fine physically and is feeling less tired and sick on these new drugs but I guess the worry is we just dont know if they are working. Because his now out of second stage remission, he could come out of all stages (there is 3) as there is only one he meet now. We really just want to get to the top specialist now, and hope to see them on Tuesday, if not heads will roll I promise you, Im not in the mood to be messed with anymore.
Can you tell im stressed?? Me? Never!!
A big smile sometimes hides a huge worry xx
Lister on the otherhand I am used to being terrible now. Darren went for another appointment and we found out that they still havent made the Hammersmith referral. His doc told me he will make it today, and he better as I will be chasing it up with calls tomorrow. Darrens scan appointment didnt arrive so we popped down there on the way out to be told tey had bounced it back as he had the same scan last year!! AND there point was?? So be warned people dont ask Lister for more than one scan a year for the same checks, it must be against the rules, weirdos.
Darren is fine physically and is feeling less tired and sick on these new drugs but I guess the worry is we just dont know if they are working. Because his now out of second stage remission, he could come out of all stages (there is 3) as there is only one he meet now. We really just want to get to the top specialist now, and hope to see them on Tuesday, if not heads will roll I promise you, Im not in the mood to be messed with anymore.
Can you tell im stressed?? Me? Never!!
A big smile sometimes hides a huge worry xx
Monday 4 October 2010
Right they seriously are getting it in the neck now!!!
Phone call recived this morning at 10am to tell me that after they lost results 3 weeks ago and had redone this morning that they didnt take enough, this letter has gone off, I have had enough of being nice now!!
FAO: The Chief Executive
Dear Sir
I am writing with a very strong complaint against your staff at Lister Hospital, focusing on the incompetence of your phlebotomist team.
My husband Darren has been under the care of your hospital for the last 19 months after receiving a diagnosis of cancer, Chronic Myeloid Leukaemia. As this is a blood cancer he has had to have blood tests regularly throughout his treatment as well as bone marrow biopsies.
In the 19 months his blood tests have been mislaid, not sent to Hammersmith hospital quick enough or they have not taken the right bloods, at least 8 times! At one point he has needed the same tests redone 5 times. These tests are very important, as they tell his treatment team if his treatment is working. Due to this delay in receiving bloods, his team did not know he was not responding for an extra 3-6 months, as he had no blood results from Feb till Sept, even though he is on 3 monthly appointment and is now having to undergo new treatments.
At the start of his treatment they also lost his bone marrow biopsy and therefore the team had no idea of baseline tests.
As you can understand this is a worrying time for us and we should not need to be chasing or having bloods done again and again. I can cannot make it clear enough how very upset we are with this and also know that as his cancer levels are raising and that this could have been picked up earlier if your staff had done their jobs.
I am sure you will want to look into this terrible level of service and we will await you response within the next 7 days.
Darren's doctor is Dr K and his Macmillan nurse is Debbie, both of which are very aware of all of this.
Yours Sincerley
Lisa
FAO: The Chief Executive
Dear Sir
I am writing with a very strong complaint against your staff at Lister Hospital, focusing on the incompetence of your phlebotomist team.
My husband Darren has been under the care of your hospital for the last 19 months after receiving a diagnosis of cancer, Chronic Myeloid Leukaemia. As this is a blood cancer he has had to have blood tests regularly throughout his treatment as well as bone marrow biopsies.
In the 19 months his blood tests have been mislaid, not sent to Hammersmith hospital quick enough or they have not taken the right bloods, at least 8 times! At one point he has needed the same tests redone 5 times. These tests are very important, as they tell his treatment team if his treatment is working. Due to this delay in receiving bloods, his team did not know he was not responding for an extra 3-6 months, as he had no blood results from Feb till Sept, even though he is on 3 monthly appointment and is now having to undergo new treatments.
At the start of his treatment they also lost his bone marrow biopsy and therefore the team had no idea of baseline tests.
As you can understand this is a worrying time for us and we should not need to be chasing or having bloods done again and again. I can cannot make it clear enough how very upset we are with this and also know that as his cancer levels are raising and that this could have been picked up earlier if your staff had done their jobs.
I am sure you will want to look into this terrible level of service and we will await you response within the next 7 days.
Darren's doctor is Dr K and his Macmillan nurse is Debbie, both of which are very aware of all of this.
Yours Sincerley
Lisa
Saturday 2 October 2010
Darren had another appointment. His getting bowel and side pain and white cells and neurtophils are up. Because they have yet again (5th time) lost results, they dont know if the cancer getting out of control or if its an infection. They know that his levels were raising on Imatinib but now have no idea if disnapib (sp??) is working.
Scan booked and blood being done again on Monday. Still waiting for hammersmith appointment.
His doc was really not happy with bloods but not a lot we can do other than wait.
Last tests showed 25% in bone marrow with 4 % blasts in Feb
BCR ABL were up from 2% to 8% in feb.
Scan booked and blood being done again on Monday. Still waiting for hammersmith appointment.
His doc was really not happy with bloods but not a lot we can do other than wait.
Last tests showed 25% in bone marrow with 4 % blasts in Feb
BCR ABL were up from 2% to 8% in feb.
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