Newbie

Hib ,

Firstly welcome to the Macmillan online community but I’m really sorry that you’ve had the need to find us. 

The majority of us here have been through the same diagnosis, diagnosed all different stages, & have gone on to have chemoradiotherapy. The radiotherapy seems to be standard whichever hospital you’re treated at, it sometimes varies in length by a week or so, but the chemo side of the treatment can vary on how it’s administered. Personally mine was a short infusion of mitomycin on day 1 of treatment with oral capecitabine twice daily each day of radiotherapy thereafter but then like with yourself sometimes the chemo is delivered via pump during the first & last weeks of treatment. 

I hope your PET scan goes well today & make your Dr’s aware that your current pain medication isn’t adequate, there’s lots of different pain medications out there & different combinations it’s unfortunately a case of once size doesn’t fit all so it’s often a juggling act to find what suits you best, just be aware if you’re taking anything that’s opiate based such as morphine or codeine etc., it might be wise to also take a stool softener alongside as these are known to cause constipation & with our diagnosis that really is the last thing you need! 

Please let us know how you’re getting on & know we’re here to support you however we can, between us we’ve a wealth of hints & tips on getting through what lies ahead. 

Nicola 

Hi nicola, thank you for reaching out, i forgot to say that im having the picc line, the chemo is the mitomycin+ 5fu

The oncologist said it would be 5 days a week at the hospital, 15 mins treatment i think

I am going through the process of trying to organise adequate pain relief, problem being i am already prescribed something, namely methadone, i am 3 years clean in recovery and have no plan whatsoever on jeopardising that, its just causing a massive issue in them prescribing me anything, i have, after digging my heels in, been given oramorph, its just the dose he has given is nowhere near enough to help, i have been contacted by the pain management team so hopefully something can be done sooner rather than later, i dont really want to be going through my treatment while still in, sometimes quite severe pain

Ah I completely see where you’re coming from with the pain relief, congratulations, you’ve done so well & risking jeopardising your sobriety is understandably something you’d want to avoid at all costs. I have to say for the short time I took it oramorph did nothing more for me than paracetamol other than cause me constipation! I was diagnosed early stages & didn’t have any pain pre-treatment other than what was caused by the surgery (local resection) to remove my tumour but went through my treatment alternating paracetamol & ibuprofen 2 hourly as & when I needed it. I really hope your pain management team get something appropriate sorted for you soon. 

Nicola 

Hello Happy forager (love the name!)

Welcome to the club that no one wants to join, however you have definitely come to the right place for lots of tips and coping strategies.  Really well done on your sobriety, and for being so strong now.  I didn't have any pain at all from my tumour so wasn't on any kind of medication prior to treatment.  At the end of treatment I had oramorph and codiene which I stopped completely as I couldn't get the balance right between constipation (to be avoided at all costs) and having the pain relief.  And I found stopping pain relief infinitely better than the constipation, so be careful of that now.

I really hope that the pain management team come up with something suitable to ease your pain that will also suffice at the end of treatment when the radiotherapy kicks in and has finished.  Please let us know how you get on. 

Irene xx 

Morning irene, thank you so much for reaching out, im managing things myself best i can, for me, the whole journey has been more of a battle than its ever needed to be, ive had to change gp surgery  start a complaints process with an advocacy service so im trying to contend with that as well but we keep moving forward

Morning nikki, had the PET with the radioisotope injection, wasnt too bad to be honest, ive got really good breathwork that i use in high anxiety/stress environments so its perfect for scanners! Got my next appt with my gp on the 5th of next month so will have a good chat with him 

That’s great that your scan went ok yesterday, hopefully you’ll get the results through quickly.

Nicola 

Best of luck, you have a lot on your plate at the moment.  I am pleased you got through the PET scan without too much trauma and hope you don't have to wait too long for the results.

Irene x