NB: Carole:- This comes nowhere near the if-you-don't-laugh-you'd-cry level of your "Hello...where is the wound on your finger?" nurse. For those not in the know this will explain http://caroleandcancer.blogspot.com/2011/02/just-quick-rant.html
For yesterdays (non)procedure I'd been sent a pre-appointment questionnaire covering current state of health, medical history (am I likely to have a heart attack or go into a diabetic coma), allergies, current medications, etc. You give this to the clerking-in nurse, and then she takes out her own sheet and asks you the same questions all over again (Why?) She asks if I understand what procedure I'm in for. I say yes, I've got cirrhosis of the liver and it's to check for possible esophageal varices. She looks at me quizzically and says 'you don't look like a drinker'. Then points at a Sharps bin (Carole knows about these too) and says 'most of our cirrhosis patients look more that colour'
Sigh.I should have taken in that British Liver Trust leaflet. The one that lists the 19 different liver diseases, of which alcoholic liver disease is but 1/19th of the sum. The one that explains people at risk of cirrhosis are not just those who drink but those who have any long-term liver infection; those who have an inherited liver disease, such as haemochromatosis; those who have an immune system problem that leads to liver disease and those with a fatty liver.
PS. Despite the procedure failing, I can't fault the professional, patient and sympathetic treatment by the specialist nurse and her assistants.
Today Dr S rang me to say I would be booked in for a second attempt and this time he would do it. Also he has the results of the biopsy but has asked for yet another opinion from a hepatologist.
Hi Fiona,
ReplyDeleteIf you feel like getting even *more* p'eed off with the medical profession have a read of Lisa's latest post
http://loopy-cancer.blogspot.com/2011/03/2010-8th-march-on-parole.html
Silly nurse, You should have told her you left your 'meths' at home but you've got a spare miniature stuffed into your sock!
People in the medical profession should KNOW about these things without making any assumptions.
I wonder if she'd automatically think that someone who was HIV positive was into casual sex or a drug addict.
I think you do need to start carrying your leaflet with you - to every appointment.
No point in educating the public if we still have nurses that need educating.
Good luck with the second procedure Fiona, maybe this time it'll go better.
xx
Hi Fiona,
ReplyDeleteI have also had the drinking comment.I dont drink never have,yet I was diagnosed with Liver cancer at 35.I always say the next time a nurse or Dr or whoever makes a stupid comment about me that I will complain but I never do!
Sorry to hear your endoscopy didnt happen Hopefully next time will be smoother.
Siobhan
P.s I would have shoved the sharps bin somewhere the sun dont shine!
Hi Carole
ReplyDelete"I wonder if she'd automatically think that someone who was HIV positive was into casual sex or a drug addict".
Most likely yes. I've become a regular on a hepatitis C forum (there are none for B, but C infected patients end up with cirrhosis and cancer too). The question of making assumptions comes up there too. There is a frustration that because Hep C is seen as the druggies disease, testing programmes are aimed at the IV drug taking community. This reinforces the assumption, so large at risk groups like middle-aged women who had blood transfusions in the 70's/80's during childbirth have no notion they are just as much at risk.
Because of the amnesia producing effect of the sedative, I've no idea why the procedure failed. I did ask the nurse, but as I was still 'under the influence' I can't remember what she said, lol!
I wasn't consciously doing anything, so if I was gagging too much, or resisting in some way it was a subconscious action. Those minutes are a total blank.
There may be some constriction or problem in my throat. I do have problems swallowing tablets and have a permanent frog/frequent sore throat. So it could be a medical or a psychological hiccup. Either way, I'm not convinced Dr S will succeed despite his skills.
I asked at the start about having it done under a general, anticipating this would be a problem. But as usual, what do I know! They have to be proved wrong first? Twice?
Hi Siobhan
ReplyDeleteLovely to see you popping in. Has the Prof decided on your scan plan/treatment plan yet?
I told the British Liver Trust I was pleased to see the inclusion of Fibrolamellar hepatocellular carcinoma in the cancer guide I lay reviewed. I also told them there was a lack of information and support out there for people diagnosed.
Addenbrookes of all places shouldn't have medics making silly comments - it's a transplant centre for goodness sake!
Re previous communication about aches and pains. Lots of cancer and hepatitis patients swear by supplementing with Vit D3 (about 1000IU not the RDA of 400) to help with that fluey feeling. I've been taking 800IU for 3 weeks now and do feel quite well at the moment.
Hi Fiona,hope you are well.I see you havent blogged for a few days.
ReplyDeleteI will try the Vitamin D3,at this stage im willing to try anything to get rid of the fluey feeling.Apart from that though i am feeling really well.No pain from the op,maybe just an occasinal twinge.I have an appointment with the surgeon on Wednesday and i suppose we will discuss my follow up scans.
I have been researching to see if there are any tumour markers for this type of cancer and it seems there is work being done on this at the moment so hopefully it wont be long before there is a reliable test to check for reoccurance.
I hope all is well with you.
Siobhan