Morning everyone, again thanks for the well wishes. Probably just a short one today as it’s been quite the 24 hours.
I had my PET scan yesterday morning and it went as well as these things can. Quite hard to lie on a bed for an hour while the radioactive glucose went through me, back pain not great, but got through it and tried to relax as I was meant to - I doubt anyone having a PET could ever truly relax. Lying on the machine with my arms above my head was a bit tortuous, but it was only about 15 mins and again got through it and finally got home about 11.45am and had some breakfast - have never eaten so much scrambled egg in my life!
Got my MRI results yesterday afternoon - really not good. It’s all quite technical, and I’d upload the report, but it has some personal info on it and I’m sure no one here is interested in the nitty gritty. Basically the main tumour has grown even since the CT scan (by just over 1cm) and there is a sub tumour and some satellites. Local lymph spread too. The main tumour is in 4a and 4b of liver with severe steatosis of traversing portal vein- not going to google that!!
The conclusion is that they think it’s a cholangiocarcinoma which is bile duct cancer, but there is still a query as to whether it might be an FL HCC which is a rare liver cancer. Who knew these things were so hard to discern! Either way it’s bad. In myself I knew that given how much worse I’m feeling compared to a few weeks ago. It’s hard seeing it in black and white though.
I saw the MRI report as it was contained within the GP referral letter we collected to take to the private liver specialist last night, Prof Taylor. He was an extremely nice and knowledgable man and did give us some hope, honestly it was just a relief to talk to someone face to face. He is part of the MDT team who will again be discussing me on Friday. He is not ruling out surgery because of my young age and general good health, although the lymph spread makes it a much more tricky proposal. He wonders whether they need a biopsy but doesn’t like doing that because of ‘seeding’, and thinks perhaps they could take a lymph node instead and test that, but it was all just up for discussion. He says no matter what that there will be chemo available for me, but can obviously make no promises about cure or anything like that.
DH took a lot of comfort from him, I guess I’m more cynical and thought perhaps he just didn’t want to tell me the worst, but DH got hope and he really needed that as we both felt utterly condemned after reading the report and seeing how much it had grown in just a couple of weeks. Keeping DH in hope is essential right now as when he loses it, it’s difficult to deal with. I get it, he’s in hell too.
Anyway, awful back and rib pain last night, feels like my whole rib cage is broken at times. Stomach area bothering me too this morning. Probably the emotional anguish of yesterday didn’t help as I’m sure pain increases with stress, barely slept a wink. Have moved a comfy chair from downstairs to the bedroom so I can sit on it during the night if lying is too hard- seemed like a good idea but I’m not sure I like it though, feels very ‘patient’ like.
Very emotional this morning after the school run - wouldn’t let DS see me in total bits. Cried for at least a hour, proper sobs, but trying to pull myself together now and face this shit. Drove my DS to school this morning for first time in weeks as DH had a teams call, was a bit of an effort and traffic was awful, but managed and it’s an automatic so no real effort physically. Need to sort out what’s happening daily though, DH will need to juggle. DS is learning to drive so hopefully he will be able to do it himself soon. He had his interview for Head Boy yesterday, said it went well and there were 5 other candidates. He will hear tomorrow if he’s been selected.
So my plan for the rest of the day is to pull myself together and sort out my tear stained face. I’m still wearing make up every day, not a full face, but just so I don’t look totally ghoulish. It helps me mentally I think. Still doing my nails too - I can’t let everything slip! Missing the distraction of my work a bit, but don’t have the energy or concentration to deal with clients, I’m extremely lucky that I can stop for now and it doesn’t drastically affect our finances.
Hoping I can get on top of this pain again today so that I can function and get a grip of myself. Prof Taylor is going to call me himself at 5pm on Friday to let me know what was decided at the MDT meeting. I’m so glad we saw him privately as I do feel more in the loop and he knows my case better now, he is also pushing for the PET results to be available for the MDT meeting. So, bad news but always hope. Always hope. Keeping faith, keeping strong, having wobbles but will keep putting one foot in front of the other.