Had my 6-monthly CT scan checking for liver tumours at Salford hospital yesterday. Don't know when I get the results, I'm still trying to get copies of the bloods taken nearly 3 weeks ago.
It was very quick this time as I no longer have the iodine IV inserted. My notes say I'm allergic to it. I guess the image wont be as clear as one done with contrast dye, but hey ho here's hoping it's good enough.
Very tired when I got back. Had done 2 work shifts before I went and the appointment was slap bang in the middle of city rush hour, so the traffic was awful both ways.
ONWARDS AND UPWARDS - a diagnosis and treatment of Hepatocellular carcinoma (primary liver cancer) diagnosed August 2010, presumed caused by 30+ years of chronic hepatitis B. And a search for how to be healthy living with cirrhosis presumed caused by Autoimmune hepatitis (diagnosed April 2011)
Fiona,
ReplyDeleteWe've got our fingers and toes crossed that all your tests come out with good results for you. Hopefully you can catch some rest over the weekend.
Carla
Thanks Carla. Feel a lot better today. Had a lazy afternoon being 'trained' in the latest moving and handling of patients. For work we have to be updated annually to make sure we're doing it right. I got to be the 'patient' while the others lifted and turned me and sat me on a bed, (and a toilet, oh joy!) and practiced getting me up and about as if I was an elderly client.
ReplyDeleteNot sure how useful the CT will be without contrast dye, as any new lumps on my liver won't show up clearly, they'll look the same colour as the rest of the lumpy liver. I'll see what the consultant says next clinic visit and we may have to think of an alternative imaging technique. Don't want to miss anything lurking there.
hello fiona. I'm from Indonesia. excuse me, do you have liver tumour? i think you have to take rest
ReplyDeleteHello Medical Shaman. I don't have a tumour at the moment - at least I hope I don't!
ReplyDeleteI try to rest Medical Shaman, but it's also good to get fresh air and exercise every day to stay healthy.
Don't worry We just wish that your result will be positive.
ReplyDeleteBreast cancer Treatment
Any word on your scan results yet?
ReplyDeleteHi emjee
ReplyDeleteNothing notified to me yet.
It's proving harder to get any results now that the scans and blood tests are being done in a different health authority. When I had them done locally I could pop in to my GP and they would pass the results on to me.
Now nothing gets sent to my GP and I'm expected to wait for my next review in clinic which is January 2012 - very annoying.
I've been plugging away for a month to get copies of the blood tests taken by the Salford clinic - no joy as yet.
I'm sorry to hear that Fiona. Sounds like the system is set up by someone who never had to wait for the results of THEIR tests. I hope you are better at waiting than I am. Blood tests, fibroscan, and U-Sound I can get the same day, but the viral load would have to go to Mumbai and back and during that time it was so hard to concentrate.
ReplyDeleteHaving to wait till Jan is outrageous.
I really hope you can shake something out before then.
Not sure about the type of person who set up the NHS systems in the UK, but I suspect a different company set up different sysems for the 150+ different hospital trusts we have running our hospitals. And it seems the different systems dont connect in a secure way.
ReplyDeleteSince my last comment I've discovered that the Salford hospital cant email the results to my GP. Why? Because email is not a secure way to send personal data.
And they cant fax the results to my GP because the secretaries have just had their fax machines removed as not being 'secure'.
So they might be able to post paper copies to my GP, but they're not keen as they're trying to go 'paperless' and cut down on postage.
Doh!
As for a CT?! Well if its this much of a problem for 2 or 3 sheets of paper can you imagine the dilemma over an electronic CT scan image!
Ha!
Hello Fiona good to see you're doing well your positivity and attitude is second to none!
ReplyDeleteWe're down the road at Manchester Children's Hospital due to my brother having advanced HCC. He's a 15 year old boy with no hep, cirrhosis or any identifiable causes; thus making him 1 in 70 million. Baffling.
He is however showing some response to treatment which is something that the web seems reluctant to share - positive news! Your blog is a lovely archive of positivity and I wish you well.
Josh, 22, Leigh
X
Hi Josh and thank you so much for your comment.
ReplyDeleteI'm sorry to hear about your brother. It must be very difficult for you finding information about similar cases - obviously very rare.
I hope the hospital are managing his case well and that he continues to respond to treatment.
Are you able to share what that treatment is?
Every time I go to Salford Royal for clinic appointments I drive past the Manchester hospital complex. As from now I shall be thinking of you and your brother as I drive past and will send some good wishes your way.
Stay strong for him and I wish your family well.
Fiona
Thankyou for your best wishes and they are returned from warm hearts.
ReplyDeleteHis tumor has spread to the lining of his abdomen, so in order to shrink them he has been put on a chemotherapy regime of doxorubicin and cisplatin combined. He is also taking Nexavar (sorafenib) which our consultant has managed to get hold of despite the costs. (I pay my taxes!) He's due back in hosp on monday for chemo number 5 then its another scan. I'm terrified to say the least.
The aim is to downgrade his cancer so there is an option for surgery as you are fully aware of and have been through it all! We're at the start of a long process with the bravery of a 15 year old boy being the main cog that drives us forward.
Reading your blog has helped - not only from the results but your positivity too.
Josh
Hi Josh
ReplyDeleteYou're allowed to be terrified. Its a scary time for you all.
Sometimes I think it's scarier for family members on the outside looking in, as you probably feel quite helpless.
Scary too for your brother.
I thought that the more procedures I had the less stressed I would get, as they became familiar.
But it hasnt worked out as I thought, I find each one more daunting than the last.
I've heard of Sorafenib and cisplatin but not the other one.
I hope he's not too knocked out by Chemo 5 and that the scan gives promising results.
Having had a son who spent much of his primary school years in hospital with severe asthma, I've been struck how paediatric departments tend to be as upbeat and smiley as possible, so I hope his hospital visits are not too daunting.
Fiona
Josh
ReplyDeleteDo you know the Macmillan online site? I have a friend on there, essgirl, who has a different type of liver cancer (FHC or Fibrolamellar Hepatocellular Carcinoma a rare variant of primary liver cancer). I noticed a post of hers about a young girl, Rosie, who wrote a blog about dealing with liver cancer (also FHC) in her teens. When you feel strong enough you might find it worth a peek at http://theknockoneffect.wordpress.com/about/
Rosie lived with liver cancer for 3 years, sadly she died this year, but her blog is inspiring and thought provoking.
Fiona
Here is an example of Rosie's writing:
ReplyDelete"If you feel like you’re going to die from cancer, but you’re not scared and you’re just ready and the time you had leading up to it was spent making the most of it and you could see the pros of dying (no washing up etc) and you haven’t got any unfinished business and you’ve made sure that everyone is set ready for their future then I think that’s positive. That’s acceptable because you haven’t suffered, you’ve survived as best you can for as long as you can. Because you will have done everything you could to prevent it but if everything else has been exhausted then you have no other option – you just have to go with pride and dignity."