Well this is a long story,Mick started loosing weight In February. We then went too the GP in March,who did a blood, when I rang up they said it was normal.Mick continued to loose weight so went back to the GP on April 9th,who then said his blood test showed dangerously high blood sugars,this is the same test I was told was normal.The GP said as there was no one who prescribe insulin we would have to go to A&E.We spent nine hours there sitting in the waiting room,where they gave him Insulin, until his blood sugar were below 20,,and to back to the GP. Where he was then prescribed insulin and Metformin.We between April and October we went eighteen times to GP. in June Hematology did a CT scan which was normal.October the Nineteenth the GP did a blood test which showed his bilirubin was high and requested an urgent CT scan, which took 2weeks and he had the same, eight days later.The CT scan showed pancreatic cancer and possible to liver cancer.He was then referred to a consultant, which took another 2wks ,he requested an MRI which took another 2 weeks.He is now having a Liver biopsy on the 2nd of January,which will be another 2,weeks.
IN the meantime I went online and found out about about Creon which is very good for people with pancreatic cancer, but has to be prescribed by a GP or a consultant. I then got Intouch with pancreatic cancer UK,who have been amazing.They gave me contact numbers for the specialist nurse at Worcester hospital,who emailed the GP to prescribe Creon.Nows there's a tail Creon is in short supply,so. then I have to find a pharmacy that had it in stock.
We have had no support from the hospital only when I have chased them for information.Thank goodness for pancreatic cancer UK .So folks that's where we are at the moment.If I'm totally honest it's not looking good.
Regards
Jenny.
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Jenny I am so very sorry to hear of your poor experiences with the NHS, it’s very much like the curates egg. Would a polite but detailed email to PALS help do you think.
I do hope the Creon helps Mick. I do wonder where they get the names from, sounds like something from Starwars.
Best wishes
Colette
PS if Mick needs more tests/scans I found calling and asking if they had any cancellations works and can speed things up. They used to know my voice eventually and did call when they had a cancellation.
Jenny I am sorry you are having to battle the NHS at such a difficult time. There are no words at a time like this. Just know this group is here for you. Take care
What a year you two have had. I am sorry you both have had to go through this. Sending you a BIG hug as you continue this journey. Remember to take good care of yourself too so you can continue to be the warrior advocate for Mick that you have been. You are surrounded by love from this group.
It shouldn't be so difficult, it's hard enough dealing with the diagnosis without having to fight for every scan and treatment. Wishing you well and we are all here to support you as you continue to advocate for Mick. He's very lucky to have such a devoted wife on his side.
So sorry to hear this! If Creon brand is difficult to find, perhaps one if the other brands are available? The pancreatic enzyme mixes are not interchangable since they all differ slightly, you would need a new Rx. You local chemist or a hospital chemist may have more information. I know there were a few times when I was working, patients needed to try a different brand when theirs was in short supply/unavailable.
Hi Jenny , so sorry to hear of your experiences, let's hope it improves from now I hope mick is stable at the moment and no more weight loss , how old is Mick only asking because treatment may vary with ageTry and hang in there must be really difficult for both of you
Hi Stewie, Mick is 79 and trying to get tests and treatment is a nightmare. He had his Liver biopsy cancelled because his bilirubin is too high.Yesterday he went to have a stent inserted,we were 5hrs at the hospital and that was cancelled as his blood wasn't clotting.He is now going on Friday,he was given vit k tablets so hopefully it will go ahead.
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