Hello

Hi Cazzita. Sorry you’ve joined our club with radiotherapy being your next course of treatment. Best advise take it one day at a time don’t look too far in advance. Depending on your trust they may want to insert a peg feeding tube or like my trust a ng tube if required Please don’t dismiss it my ng tube was my lifesaver it enabled me to make a good recovery as I was able to get enough nutrition and hydration plus when needed all my medication went in via the tube. Make sure you are on top of pain medication ,when pain starts don’t chase the pain keep on top by taking it by rote. My blog below might help you or your family to have an idea of what we go through. Saying that it’s all doable  and now I’m happily living my life. Sophie 66 is a much loved member in here she’s often up when we’re asleep as she’s jn Southern Australia. 
Any questions just ask 

Sorry can’t help with the arm but am sure someone whose had a neck dissection will pop on soon.

Hazel x

Thank you so much Hazel! I think your advice to take it one day at a time is very wise but I find it so hard to do as want it all over with ASAP, some hope! I did not even think about needing a tube and hated the ng tube when I had the surgery. But I will consider it if it's recommended.

Like Sophie, I am also in South Australia (married an Aussie) so we are on the same time zone. I am English and live in England for half the year but was unfortunately diagnosed within a month of being back in SA so had the treatment here, which has actually been very quick and amazing. Hope the NHS is managing to treat cancer patients as quickly as the waiting is awful.

I have read some of your blogs, well done for being so inspiring and helping others. I will hopefully be able to give back one fine day when I have recovered and know what I'm talking about! xx

Hi Thank yiu for reading my ramblings. The NHS is coping  it’s getting in the cancer pathways via GP that can be the issue once you’re  in the system it works. Glad you and Lynn can help each other. Yes we all wanted treatment ti start imminently but there’s a tried and trusted protocol the radiotherapy wizard have to do intricate planning etc fingers x you're not too long. Were all here dir you when yiu need anythjng 

hugs Hazel x

Thank you and it's great to know this forum is here as I'm sure I will be needing it. xx

Hello Cazzita

very early days yet for your shoulder recovery, I had jaw surgery and neck dissection, just the same discomfort with shoulder as you are experiencing presently, keep exercising gently but regularly and you will get your full arm movement back as I have. My shoulder is very slightly lower than the other side now but definitely not noticeable to anyone but myself (bra strap slips a bit) other than that just a slight tremble in my arm when at a certain position, but strength is back to normal.

All best wishes for the rest of your treatment and full recovery.

June x

Hi Cazzita, welcome to the group. When I was having my RT, my wife would apply Aloe Vera gel to the area after each treatment, (only after not before), it was very soothing and kept the area moisturized. I also would say have a feeding tube if you are offered one, even if you don't need it, it's best to have it in case you do. Any worries or question just ask, we are all here to help each other if we can.

Ray.

Hello there June and thank you so much for your response. It's good to know that I'm not alone in what's going on with the shoulder. I also feel that my left shoulder is now lower than my right but very slightly. I will do the shoulder rolls and hunches for sure. Hope you are all better now. Thanks again. x

Thanks Ray for replying and reassuring me. I will keep the Aloe Vera in mind in case I need it. I am absolutely dreading RT for all sorts of reasons, the feeding tube being one of them. What would happen if I refused one? Would I lose a load of weight (yay!) but become weak and more unwell (boo!)?

Hope you are doing well now.

Cazzita25 said:

What would happen if I refused one? Would I lose a load of weight (yay!) but become weak and more unwell (boo!)?

Hi and welcome from me. I didn't have your sort of surgery but I can definitely help with this one.

Radiotherapy usually gives you such a sore ulcerated mouth it can make it impossible to even drink. I was in trouble at the beginning of week 4 and had an NG tube for 8 weeks. It saved my life. Most patients here seem to have PEGs or RIGs that go straight into the stomach rather than up the nose.

If you don't get enough nutrition you won't heal and if you lose too much weight and get dehydrated you will end up in hospital.You might not even be able to get analgesia into you and that is the stuff of nightmares.

Don't be afraid of tube feeding. It doesn't last long and really smoothes your treatment. The side effects of RT are harsh and the whole thing is a challenge but it doesn't last long, side effects can be mitigated and it's doable a day at a time.

Thank you I'm doing fine, 6+ years post treatment now. You can refuse to have a feeding tube, it's completely up to you, there are some people who have had treatment without having one and been ok. Eating in many cases does become difficult, and you do need to get your nourishment and water, to get through the RT and your recovery afterwards. 

Ray