Hi all was wondering if this has happened to anyone else..... my story started last August I'm a postman who thankfully delivers to his own house! Well I was about 4 doors away from my house when I had the urge to pee I thought " nice one so close to home" I the full on wet myself no control whatsoever and it really stung! So I shot indoors showered changed and carried on with my delivery I called the Dr thinking I had a water infection tests revealed microscopic blood so further tests done finally a biopsy after which all went quiet so after 2 months of me badgering I finally got an appointment in December to be told that following my biopsies in September haematology should have arranged another blood test to see if my raised lymph nodes was reactive or nhl was told if I hadn't heard in a month to call so January came I start calling finally get seen in March to be told I have low grade nhl! And they had the results back in October!!
Anyways a quick pet scan showed stage 2 and itvwas impacting on the tube from my kidney to uretha so 6 cycles of chemo starting in straight away as the treatment went on I was very lucky that the only side effect was tiredness my consultant meeting halfway through went well "ordinarily we'd send you for a pet scan but no need your bloods are fine you are looking soo well and feeling well so we will do at the end and if there anything that needs doing I'd be gobsmacked!!" All good!!! Anyhoo fast forward to July's chemo and the nurse is looking all confused "you've missed 2 appointments??" I'm like no I haven't! I got my list out and hadn't missed any it appears the dept that sends the prescriptions to the ward had missed off the 2nd day treatment For may and june!!
So home calls made and emails sent I was told it would go onto my maintenance plan then a call up for another pet scan I then on the day I think is my last chemo recieve a new list giving me another cycle with a note from consultant saying due to 2 missed appointments I've decided to add another cycle of chemo now I'm guessing it's the haematology dept that sends the prescription list to the day unit I attend and if that's the case it's not once but twice they have fundamentally messed up my treatment plan
Hi again Richiepoos …..
I personally have not had this issue but over the past 7-8 years volunteering on this community but also with Lymphoma Action (Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment)…. I have actually talked with a good number of people who had the same experience…..
Unfortunately things do drop through the cracks of the NHS but once the mistakes were identified and the treatment protocol sorted out treatment was completed and as yet I have never heard of anyone saying that these bumps on the road had a long lasting effect on the desired outcome.
