12 weeks post treatment - update

Hi tomorrow tell your team you’re in pain there’s no prizes for being brave. We all have been  there ask tomorrow by end of week 3 I was taking 30 mg cocodomol and oramorph. Please don’t suffer. 
Hazel x

• Thanks Hazel I will. I only saw the nurse practitioner on Friday but was fine then, it has happened quite quickly over the weekend. I think I am worried that if I start pain relief early then when I am really bad later on I won't feel the benefit of it. I don't know where I have that idea from. Karen 

KJK said:

I am really worried about being able to cope with the pain when I know it will only get worse in the weeks to come.

Hi Karen

My pain came crashing down around me practically over night too.

Recalling other folk's experience the pain seems to plateau at around the end of the 4th week. I certainly didn't feel worse after that. Maybe it was because we have our pain meds worked out to the last T by then. The best way to tackle pain is to take your meds by the clock. It's better controlled if you aren 't chasing it. So I agree with Hazel. Tell your radiographers today that you are in trouble and need some decent analgesia. I was offered cocodomol but it didn't agree with me so I pretty quickly went on to morphine. It was a godsend. There's not much you can do for short term swallowing pain apart from stuff like Difflam, Oxetecaine,and soluble aspirin which do help a little but the morphine takes away the background pain so that you are comfortable.

Don't suffer. Get on top of it now. If you need hefty doses of opioids later so be it. They just make you sleepy....oh and don't forget laxatives, but I'm sure your team will give you those

Good luck

Hi Karen. Pain crept up on me over the weekend as well. Don’t worry about how much you’re likely to take. I only took paracetamol pre  cancer if I had headache , by the time I had finished I was on 8 x 39 mg cocodomol plus at least 40 mil if oramorph  often with sips in between . in My oncologist s words we’ve got can wr  which is bad enough cancer and pain is not acceptable the clues in the names painkillers.Yiu won’t get hooked on them I’m back tj idf paracetamol if I’ve headache you didn’t a phased withdrawal. Yes remember to ask for movicol or laxido as you do get constipation with opiates. Good luck for this week. 
hugs Hazel x

Hi Dani thank you so much for the reply. It is comforting to know that at some stage the pain plateaus...it gives me hope I will get through it. I will get onto getting my regime in place. I am definitely not going to be a martyr. Karen x

Thanks Hazel it is good to hear other experiences as it reassures me I will get through it. I am going to speak to the nurse practitioner and get my regime in place. I need to let go of my old way of thinking in terms of resisting pain medication. I will let you know how I get on Karen x

Hi Karen - As others have said, take stronger painkillers when you need them! I had my RIG tube inserted in wkk3 of treatment, which caused considerable pain and I started oramorph then for about 1 week. I then had a week where I didn't need it every day, until persistent pain set in around wk 5 of treatment (I had 6 wks RT and 2 chemo). This lasted until around wk5 into recovery. We are all different so please don't hold back on starting the hard stuff whenever you need it and continue it until you don't!

I started using my RIG tube for nutrition full time by wk5 treatment and stopped around wk5 recovery; but I was staring to eat soft food around wk3 recovery, just experimenting with taste - the feeding tube allowed me to load up on calories so I didn't need to force myself to eat on those days I really didn't want to!

I had my RIG tube removed today and it took the nurse less than 60 seconds - hooray!! 

An odd one: I found that the skin on my neck was perfect by 2 wks recovery, felt a bit stronger by wk3 - then BAM! I had a rash and swelling in wk4 recovery and my throat peeled on the inside and outside (Yuk!) ...So, I started taking oramorph again at nighb and my wk 5 recovery, I started seeing progress again so I stopped :) It really is different for everyone. Even this week, I've had a sore throat and I can feel the inside of my throat is "renewing" again and I've been spitting up phlegm nastiness as a result. The delights of RT!

Good luck, keep ploughing away (I treated the entire thing like a challenge/ job - just eating/ feeding for calories only, taking meds, sleeping whenever I needed). If you have any questions, remember nothing is too outlandish because this treatment is brutal, please just ask...

xxx

Hi HMS thank you so much for your reply. It is so good to hear others experiences as some days I feel like I won't ever be able to get through it...I might be the first person to just throw the towel in and say nope can't do it! I am going to get my pain medication regime organised this week and just try to get through each day. One message I have taken from the fab peeps on this site is to take each day at a time and expect ups and downs, moving forwards and backwards and be prepared for the unexpected. I will hopefully get a grip of things this week. Thank you again so much for taking the time to post your experience it is so helpful Karen xxx

KJK said:

I might be the first person to just throw the towel in and say nope can't do it!

Nope! All of us who have gone before you did just that. I had a few meltdowns throwing up in the bathroom in the middle of the night, trying to keep quiet so as not to wake my husband. 
One day I went and screamed at the bees. 
Then the sun shines and you realise that you actually matter to a heck of a lot of people so you just put your head down and do it. 

Hi Karen - you will get through this!

I have had days/ weeks where I thought I was stuck in quick sand; feeling very sorry for myself. It can be grueling through the second half of treatment, then gets worse (sorry) during the first few weeks of recovery ... But as long as you know that and just push forward, you'll get there a day at a time! There will be some good days too. For me this was actually a bit annoying as I suddenly thought I'd turned a corner, only to find a day or two later I was back in poop land!  But just knowing it's going to be a bit crap enables us to handle things better in my opinion. I remember my head & neck nurse saying something like - just get your head down and get through it! Why bother trying to sugarcoat it I suppose LOL!

If / when you have a backward step over the coming weeks, just remember many of us took those backward steps, our footprints are all around you; and one day soon you'll be sharing your experience and support with others at the start of their journey.

Helen x