Hello

Hi Shaun and welcome\

RT does make you very tired and with Chemo added it's worse. Constipation is a concern and as treatment progresses and you need opiates it will get worse. All I can suggest is to up the Movicol, drink lots and get some exercise under your belt, even if it's just gentle walking

Tell us a bit more about yourself (you could put it in your profile too) if you're up to it.

There have been a few folk here on PBRT but not many. Where are you being treated?

By the way, If that is your real name Maclillan will chase you for it so maybe you can change it to something that doesn't identify you? Shaun is OK though

Hi Shaun. Welcome from me. Please uo your movicol and take it daily as constipation is the last thing you need. Maybe try 2 or 3 to get yiu you going so to speak. If yiu read the packs yiu can take uo to 6 as impacted poo is t pleasant and you don’t want that. 

. Are you on a trial with the proton beam therapy at Christie’s ? 
im 4 years post chemo radiotherapy for tonsil cancer. 

will try to help if we can.

Hazel 

Hi Shaun.

i have just finished 6weeks of chemo/radiotherapy. I had a few side effects but without doubt constipation caused me the most grief.. I think it is fair to say it really was a pain in the ****.

For the first 3 weeks I had it under control with laxido where I would take does in the morning and evening. Also if I got really bungee up you can really load the dose (6 at a go) which is equivalent of sending the miners in. The next 3 weeks were a problem for me as the chemo did mess me up. Eventuality, I could take lactilose but more often than not had to attack the problem simultaneously from both ends . Having some suppositories and a few strange purchases I made on Amazon as back up did come in very handy.

i have now just passed the 3 week post treatment marker and I can say in my case things are pretty much back to normal. What definitely helps is being able to balance the diet a bit better, making sure you take on plenty of fluids and exercise. Now if am get a little concerned about regularity there is a particular walk I go on which seems to scare my bowls into life.

As others have mentioned there are loads of people on this site that have been through what you are going through and are great sounding boards for bouncing off how you are feeling, also in the position to offer some great advice as well as answer so many questions you may have..

Take tit from me as a person who has only just finished their treatment, this community was so supportive and helpful to me.

Best of luck and wishes 

regards

T

Hi Hazel 

Yes, that's right at Christies for the next 6 weeks and one week in. Thank you for the advice. I will up the movicol and plan some steady walks. 

Cheers 

Shaun   

Hi T

Thanks for replying. I guess it's all part of the treatment. It's all new and has hit me like a brick wall but more challenges to come. I will certainly be drawing on your valuable advice. 

Thanks

Shaun    

Hi Shaun. I was at Christies last December/January for 6 weeks. They are utterly brilliant there. Don’t be afraid to tell them everything - no matter how embarrassing. They’ve heard it all before and know the best way to help. Up the Movicol and try to eat as much as you can - it’s not easy I know, but you’ll get there. 
I was SO impressed with them there - I wish I could have stayed under their care, but I’m from down south and I was transferred back to my local hospital who’ve made a right pigs ear of a second biopsy for me, so I’m now in constant pain, have way more drugs than I had at at Christie’s (so I’m now going down the “bunged up totally” route too) and, to add insult, I have issues with my jaw opening (Trismus) which gives me huge issues eating.

I’m sure, if I had stayed under Christie, I would have been better looked after.

Good luck with the treatment there - they’re amazing and I’m clear, just have issues due to their second biopsy operation. I’m sure you’ll be fine - but if they come back to you after the 3 month PET scan and ask you about a second biopsy, let me know and I’ll get one of the docs in Manchester to advise you. 

All the best

Dave

Hi Dave 

Thanks for the reply. I am also impressed with Christies, and I do feel in good hands, and they are very reassuring and professional. I have another 6 weeks pro/chemo treatment then back to West Yorkshire for follow up and what is going to be hopefully steady recovery.

Constipation has improved thankfully with the helpful advice. To be honest I've been down in mood, but I think it's about the process of adjustment and acceptance and realisation of the challenges ahead.   

It is really helpful to chat to folk, and this does help. Hope the jaw issue resolves and thanks again for the reply and I will be mindful of the potential biopsy request after PET you mentioned.  

Cheers

Shaun   

Shaun22 said:

mindful of the potential biopsy request after PET

I had a hotspot on my post treatment PET which necessitated a biopsy but I had absolutely no problems with it at all. 

Shaun22 said:

Just started treatment for HPV tonsil and neck lymph node cancer. Had first 5 proton

This is TORPEdO yes? 
There are welsh patients on it too which is good news for us sufferers in Wales 

I am in my first week of treatment and already feel overwhelmed. Hopefully things will become easier to navigate as we progress. Sending huge positive energy your way