Hello all
I’ve got to be honest and say the Radiotherapy really knock the stuffing out of me and I’m finding it very hard to recover from the treatment, I’m still struggling to get back on track, still not managed to get food down my neck. I know were all different and we all have different symptoms. But I realise now how naïve I was about the whole Radiotherapy process. When I had the operation I was prepared; I thought I was prepared for the Rad course how wrong one can be. This forum has been a saver in more then one way. I have look over past forums and got a lot of my answers but there’s not much there on sore throats. Could I ask did anyone sufferer with a sore throat post Radiotherapy and If so how long was it before the symptoms started to ease? Thanks you
Rolf

Hi Rolf,

Looking back Iover your past posts I can see that you have had morphinre in the past. Don't give it up just yet, it's going to take a little while for you to recover from what you have been through. My radiographers waited until the last day of my treatment to tell me that the side effects would continue to get worse for a couple of weeks after the treatment ended. By then I was nearly at the end of my tether, and I was hoping that things would start to get better as soon as they stopped cooking me on a daily basis. I was on Oramorph, a liquid morphine that can be swallowed easily, for a few months after the radiotherapy. I think it did take a couple of months at least for the soreness to ease, but I don't think my throat was fully healed for at least six months. Because you need to eat and breath you can't stop using your throat, so it takes a long time to heal properly.
Eatting can be very difficult after the radiotherapy, but do try to get as much good nutrition as you can. THe radiotherapy is not very specific in tyhe cells that it kills off. It kills everything in the targeted asrea, and not just the cancer cells. So it is important to eat a high protein diet, to give the body the building blocks it needs to rebuild the damaged cells. It's much easier to say that than to do it, and I didn't eat for about four to six weeks after the end of my treatment, I lost about 3 stone in weight, and my throat didn't heal. The hospital where you were treated should have a nutritionist attached to the radiotherapy department, and they should be able to advise you on your diet. They have sheets on increasing the protein content of your diet, as well as guidelines on preparing soft and moist foods. They can also give you special food replacement drinks, called fortisips, which contain everything you need. If you are no longer attending the hospital then contact your macmillan nurse, who will be able to poiut you in contact with the nutritionist.

It's going to take a while Rolf, and the impact that Radiotherapy has comes as a shock to a lot of us. Good Luck, and I hope you feel a little bit better soon.

Jenni

Thank You Jenni
The NHS have done a wonderful job on me and I can’t grumble but I must admit I feel a bit let down on the Radiotherapy side, If it wasn’t for people like you self I would still be in the dark. For instance the sore throat I didn’t notice till 2 weeks post Rad because of all the other pains etc No one has said how long it will be for any recovery or what type of post symptoms I my have, and there all started to show through now and not sure what’s what, I know It’s all part of the recovery but It would be nice to have some Idea. Thank you again.
Rolf

Rolf,

I think the hardest time of all is the few weeks after ythe treatment has ended. When you are having the radiotherapy you see medical professionals every day, and then all of a sudden there is no one there to talk to. The transfer of your care to your GP is all very well, but your GP has proibably never had any experience of a case like yours. If you have any questions then contact the macmillan nurses (who are angels in my opinion) and they will be able to help you. Otherwise if they are not urgent then write them down so that you remember them when you next see your consultant. I worked on lots of lists just after my treatment, my doctor used to laugh at me, but it was so frustrating to leave the surgery and then remember everything you wanted to say.

Hi Rolf,

I know that you have been a few weeks behind my husband Robert with your treatment. Just to let you know that Robert is now managing to eat a little food. He hasn't really eaten since October and has now lost 3 and a half stone. He's been living off Fortisips and Calogen. In my opinion he is doing fantastic considering what he's been through and he would be doing even better if we didn't all keep bringing bugs home with us to pass onto him! When he was in hospital (for the last few sessions of Radiotherapy and the following week) he was on 120mg of slow release morphine tablets and also liquid morphine (Oromorph) for breakthrough pain relief. Today he's on 40mg of morphine tablets and no Oromorph. He's just commented to me that he's not in any pain at the moment so we're going to reduce the dosage to 30mg in the next couple of days. Rolf, it's a very slow process and sometimes it's one step forward and two steps back. But we keep thinking how ill he's been and how much better he is now. It's been very difficult for me to see how much pain Robert has been in so if he needs the morphine tablets, he gets them for as long as he needs them. At least they enable him to eat a little bit of food now.

Hang in there Rolf it will start to ease.

Hi Lorraine
Clad to here Robert eating a bit. Yes I’m about 3 weeks behind Robert I think, I seem to have one major advantage I’m off the Morphine most of the time now. I can’t eat even with having taken it so as these no gain so I’m off the stuff most of the time, there seems to be two areas that are not allowing me to eat that’s the good old tongue and the throat. Like Robert I’m on Scandishakes and Calogen same problem as most I’ve lost loads of weight 14 Kg (2.5 stone). Reading a post Jenni had posted about tiredness same problem as well sleep 12-14 hours a day still. I know I’m not unique with this dam disease no one is just so frustrating when we can’t do simple things and you can’t see improvement (yes In hindsight two weeks ago I was a total wreak now just a wreak so there most be improvement somewhere). I think the frustrating bit is we all know we need to eat to get better if we can’t eat how are we going to get better “Catch 22”
Thank you
Rolf

Hi Rolf
Two years ago i was in your situation, I had a feeding tube inserted into my stomache but was not able to keep the nutritional liquid feed down for some reason. I did lose 2 stones in weight through my illness. I recall the sore throat and did not speak for some time - communicated by sign language and a chalk board! I survived on build up drinks - I did not like the fortisip ones. I had to buy them as tey were not available on prescription. The chocolate ones I had warm which were quite soothing. I also was on liquid morphine for some time. Once radiotherapy ended it was not too long til my voice came back and the soreness wore off, I used to sleep all the time. It's true what Lorraine says - what a shock radiotherapy is to us all - even though I was told I was in for a rough time! Also MacMillan nurses are excellent - do use them. Good luck & all the best for the future.
Sheila

Hi Rolf,I was so happy when I finished my treatment- I thought that would be it and I would feel better straight away. How wrong can you be? It didn't matter how much I was warned,my brain had said youv'e finished now that's it. I found being unwell not easy to cope with.
I had a reasonably easy time as I didn't need painkillers other than aspirin 20 mins before eating. Although as I had a peg I didn't eat much!
It does get better and certainly a month from end of treatmentyou will notice a change.
I am now 4 months on and I am getting much quicker at eating my meals and now, occasionally have wine. Some days I eat better than others my tastes are all over the place.
Keep talking to us and you will get through.
Smile!
Anne

I think nearly all of us are shocked by the severity of Radiotherapy and the damage it causes. It totally disrupts your life and it takes a few years I think to get over it properly, and even then we still have our permenant side effects to deal with.

My experience is this:
My consultant played down the pain of Radiotherapy treatment, telling me I would suffer minor discomfort and all would return to normal in a matter of months. The truth however, is very different:
1. 7 months on a peg
2. Incredible pain
3. Severe depression
4. Morphine addiction
5. Spell on Mental Health Unit
6. Severe weight loss

With proper councelling and an upfront knowledge of the real effects of heavy dose Rad Treatment I may have suffered less, both mentally and physically.