Scared

Hi Butterfly. I don’t have much advice or experience to offer, just solidarity. We are currently waiting on my dad’s pet scan results after him being diagnosed at the beginning of November. The wait is just awful and especially this time of year. I’ve never felt less Christmassy in my life! Some advice I can offer is just try and take each day as it comes. It’s hard not to get stuck on the what ifs but I’ve been trying to just focus on the next immediate step, like the pet scan. Praying for good news for your friend and I hope you both manage to have as good a Christmas as possible x

Thank you Gracie for taking the time to reply. I know the wait is the worst part. I am like you, I can’t even think about Christmas at the moment. I really hope your dad gets good news from his PET scan. Take care xx

So sorry you are going through all this worry at thus time of year. I remember when I was going through all this I was a bit cheeky and phoned the PET scan people who were contractors and booked a weekend appointment. I then phoned the hospital to get it authorised ! I am a but pushy with this kind of thing and will do anything to move things along. It really is the time of maximum concern and I wish you both the very best outcome.

There was lots of confusion over my dad's liver, initially he had a biopsy in a specific area they were questioning prior to chemo which came back negative, then after pre surgery chemo had finished the scans showed more shadows on his liver, which was odd because the cancer in his oesophagus responded really well to the chemo. They ended up doing keyhole surgery to do a proper biopsy on his liver on the first spot they saw which came back conclusively as no cancer present. So they then did the surgery and he's on round 3 of 4 post surgery chemo. 

At one point they told him the cancer was terminal due to the liver marks without having conclusive evidence that it had spread, in the end they believe he's got bile duct hamartomas which were being confused for spread of cancer. 

The waiting for diagnosis and scans is just horrific and so many negative thoughts flood your mind, it just consumed me. 

I hope your friend has a positive outcome. 

Waiting is the worst I was lucky / unlucky to be a inpatient when I was having my tests so got the results very quickly although I had to wait for my PET scan as the machine was broken for a week ! They also felt I had a shadow on my lung which turned out to be nothing! Fortunately I’m a glass half full sort of girl and try to be positive which sometimes works in my favour and other times not ! My husband is the same and will not let negative thoughts in 

how is your friend taking it ? Is he as scared as you ? Or is he trying to be positive? 

Sending hugs

Tricia

Oh my goodness how scary for you. I am glad it was positive news re the liver. I just hope we have positive news. The waiting is just horrible. I am glad your dad is responding well to chemo.Xx

Hi Trica,

Thank you for taking the time to reply. I am going to try not to worry about the shadow now and hope it also turns out to be nothing. I think I seem to be more worried than him and he is just getting on with things which is probably the best thing. He seems to be tough which is a good thing. I hope things are ok with you xx 

Yes thank you chemo going well and I’m looking forward to Christmas it will be very quiet just us and daughter and I might spend it sleeping who knows but it won’t be a nap after a bottle of wine this year   
just want to get chemo done and move on to surgery it’s going to be a tough year next year but determined to say positive. 
please try to enjoy your Christmas I know it’s hard when so much uncertainty is hanging over you but once your friend has a plan and you know what your facing it is just a case of taking one step at a time 

sending love 

Tricia 

Thank you for being so kind. I am worried as he has this constant pain in his right side of his back and now seems to have a cough. Amazing how quickly these symptoms have come on as before the endoscopy and diagnosis a few weeks ago he didn’t seem that bad. He seems very tired all the time but I assume that’s normal. I am so pleased chemo is going well. Enjoy your Christmas with your family. xx

So I spoke too soon about him being positive and tough. He has just broke down in tears on me saying he is terrified. He seems to be in so much pain and is now being sick after eating is this normal?. I am trying to say the right things to him without getting myself upset in front of him. He just keeps saying he thinks it has spread as he feels the pain everywhere. Thing is he is not good at taking the medication and seems to think if the pain is not that bad he doesn’t need to take it. Then the pain gets so bad in his tummy and back and he is in agony. This seems to be after food. Is this normal. I’m feeling so helpless at the moment x