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

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

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.

Can it get worse? yes it can

Darren had a car crash yesterday, this is whats left of his little car :(

Well more results are in and its not good :(

Darren has developed a resistance to the chemo, even at double dose. The bone marrow shows a rise to 25% of cells having cancer but not in the way that makes in blast crisis (very complex). The cancer is rising and he has splited out of the 2nd part of remission and it not great.
He now starts new treatment tomorrow but has had loads of bloods taken for gene testing. If he developed a resistance to this chemo he could be resistant to all of them and then its straight to Bone marrow transplant.
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bad news keeps coming! :(

Blast cells from bone marrow hadnt changed at all still at 4% on last tests. They have told us if it goes to5% he will be in crisis phase which is classed as AML which is scarcy as that is full blown, iv chemo and stays in hospital stuff :(
please keep us in your thoughts.
Im sure we will get though this, we always do and are just treating this as a bump in the road.

Bad news at appointment :(

Darrens chemo isnt working, and the results show his cancer cell count is back to what it was Aug last year :(
He now has double chemo, a bone marrow biopsy next week and a referal for Hammersmith which has the best specialist in Europe.
Its very hard to hear that the last year has been for nothing and we are pretty much back to the begining. The chemo is making Darren feel sick and his tired :(
Will update with more news when we have some, hopefully next time with better news.