I don't really know where to begin.
My dad had X4 FLOT, the op in Sept 24 and then X3 FLOT which finished early Dec.
Around the middle of Feb he started getting pain in his left thigh, mainly on the back of it where you would sit on it. It was thought to be sciatica so was having physio however as time went on the pain was getting worse too the point that it would hurt too much to sit on it. Then came numbness to that area but still bad pain when any pressure was applied. Co-codamol didn't touch it, he ended up on tramadol and Pregabalin and still, barely any relief. By the middle of April he is in so much pain and noticing that his bladder sensation is not normal he ends up at A&E where they do an MRI on his lower back and notice that it's different to the one he had just before surgery. The next day he had a full spine MRI.
The same day of his full spine MRI scan he sees on his app the results of one the day before. Mentions a tumour in his spinal cord. And his blood test results all heavily indicate that it's back.
3 days later and still no word from the hospital, even though we've seen the results. He contacts his GP to ask for more pain relief and is given Oramorph and they get the hospital to call us who call him in and he's admitted for 2 days.
During those 2 days he had a CT scan, which came back clear, it didn't even show the tumor in his spinal cord. 6 days later he had a PET CT which shows spread to his liver, lymph nodes and at the site of the original op. He had a CT scan in March as he's on the SARONG trial which also showed clear. I would be 99% certain that if he had a PET CT in March instead we would have seen the spread then.
He's had one dose of radiotherapy for his spinal cord tumour to try and help his pain. At the moment all he can do is lay down because he's now gets shooting pain whenever he puts pressure on his heel. He's been offered chemo to try and buy time but that isn't due to start for another 4 weeks, whilst all the time its growing and spreading.
It's utterly heartbreaking seeing him in so much pain and he's lost so much weight, even though he's eating more and doing nothing. I always knew that it could come back but I thought we would at least get a year to enjoy, we've barely had 2 months from his chemo finishing to his leg pain hurting and he has been told that his tumour inside his spinal cord would have started causing him pain from the time its 1mm in size. We don't actually know how big it is because one MRI said 7x5x10mm and the other said 8x9x25mm.
And now we're just waiting. Waiting in hope that the radiotherapy can relieve him of some of his pain and waiting for him to start chemo. Life is truly unfair and cruel.
It’s absolutely cruel and unfair and the thought of something similar happening to my husband is constantly on my mind. He too had chemo then the op but histology not great from the op. I’m so sorry for what your dad is going through. It’s awful not being able to help.I hope so much he can get some relief very soon. Sending love.
Geraldine 
xx
I think the decision making ….. do I don’t I …… is very often difficult. My husband had a bad time with chemo but still wants to try and struggle through it post op …… not sure the oncologist will agree 
Do please let us know how your dad is getting on and fingers crossed for some relief for him. Xx
Thank you for your kind response, we just keep hoping every day that he'll wake up a little less in pain however there is no sign of that happening yet unfortunately. We have meeting with oncology in a couple of weeks time and I'll be ready with what feels like a million questions to ask.
I'm sorry for the loss of your dad last year 
️
X
I bet your run off your feet with two little ones as well 
Bless you. It is mentally exhausting. When it all started I just thought it would be my step dad having to go through it all but it definitely takes it’s toll on all the family. It’s the watching and not being able to help make it better I think is one of the worst parts.
I know that’s it it’s like if we feel like this how bad do they actually feel 
I can’t imagine how your poor dad feels going through all that which is gruelling to then coming out the other side to now this.
Constant pain is bad enough on its own but to have to go through all this as well I really feel for him and all your family.
Did they say how long the radiotherapy might take to start working? And have they got any other plans going forward? I really hope this morphine works or at least eases it a bit for him. I’ve got everything crossed for you all 
