Hello

I am 4 weeks out of RT, eating is back and after 33 fractions I have managed to avoid the feeling of tiredness if not a bit of lathergy. I have had my NG tube and started yesterday gentle exercise to keep mind and body sane. My mind wants to return to normal, although a few good nighst sleep would help and my body is telling me you have the energy, if not a bit of lathergy.

I have asked lots of medical professionals about the side efefcts of RT and wearing off and the general assumption is about 6 weeks after things start to reurn to normal. I have planned to reurn to work on the 3rd Oct 2005 and easing myself gently into work. Is this too soon, everyone says listen to your body, but my body is not sure what it wants at the moment.

I am working off an assumption that in 25 days I will be a lot better, everyone has said this a fair assumption, just enjoy the time alone and at home before you get back on the bike of life!

I welcome your thoughts what other experiences have people had?

Hi Nigel

You definately have the right attitude, not letting this horrible disease pull you down. I get annoyed when you hear these doctors telling you you'll be fine in a few weeks, what would they know? have they been through it? They seem to think we should just breeze through it.
I finnished my radiotherapy on 31st March, then my problems really kicked in, but I am pleased to say I returned to work 2 weeks ago, starting off on 2 days a week.What I would say to you is listen to your body, although I look and feel ok I do get tired very quickly, and this frustrates me,but it is a catch 22 situation, how can I build my muscle up If I don't try. I want to return to 'normal' but I think it is going to take a bit longer than I hoped. But it will come.
Good luck, and don't try to rush yourself too much or you could set your recovery time back.

Best wishes
Tracey

Hi Nigel, I totally agree with Tracey. I finished my radio 24/12/04, went back to work in Feb but had a setback with very bad fungal infection in mouth and throat which delayed my return to proper eating. I went back again in April 3 days a week but just afternoons. The tiredness is a problem!
Now doing 3full days a week, which are the hours I did before the C. Still go to bed early even if I watch TV. Eating 99% normal but still at 80% energy levels! Don't try to run before you can walk!
Sue

Thanks very much for yoru kind thoughts I have 22 more days to consider this move, the 3 days a week maybe the answer and one of those at home. My contract runs out at the end of October 2005 which is fine by me because I can take time off after that as well.

I am nervous and I suppose a little lacking in confidence after all until I go on holiday next week my entire summer has been spent in my house or the hospital.

I am getting some sleep and worked out that 4 factors will make my judgements, energy levels, pain levels, body condition. Mentally I am settling down to the fact that I need to chill for the next 21 days hence 6 days away in my camper van reading, chilling, smiling at life and enjoying the Brecon Beacons.

The energy levels and weakness are a problem to me, I get very frustrated with myself, for example I have just vacuumed my stairs, and now feel totally drained, how pathetic
I also find that because I don't look ill anymore, some people don't understand and feel I should be able to manage things I used to do.Only the people in this forum TRULLY know how I feel, and I thank you all for letting me sound off at times
Nigel please take advice from us and don't try to do too much, too soon, it really isn't worth it, last week I tried to do my old job,just for a couple of hours. BIG MISTAKE, I had been put on light duties, but thought 'oh I feel ok, i'll try it',no-one tried to stop me (coz I look ok I suppose)I felt really exhausted, it's just not worth it, and I got no thanks for it, so have decided I am not going to push myself for anyone and I will listen to my body.
Please do the same Nigel, think about No. 1
best wishes
Tracey

Tracey I think you can read my mind! I feel exactly the same way. Everyone says how well I look and haven't I put on weight! Very frustrating to look so well but feel so exhausted after doing relatively little. I used to be the life and soul of the party, now I'm the first to leave!
Still at least we look OK and things can only get better can't they??!!!!
Sue

Tracey

You are preaching to the coverted I went for a gentle walk today and know my body was saying thats far enough.

I will listen to my body and your excellent advice as I am making good progress and would not want a setback, after all I had my first real solid meal tonight and it took me 30 mins to eat a bowl of pasta.

I have a confession to make I turned down a PEG tube and ended up not eating for 9 days during RT and Chemo and had to beg the dietician at the hospital to help me. Shoe found me a bed immediately and within 24 hours I was receiving food through a NG tube. So I will accept your advice and yake things easy, after all apart from the little walk I sat and watched the cricket! I have learnt the hard way.

Nigel congrats on your first meal! Each week of eating gets easier and qicker but it takes time. I can now eat virtually anything andd almost as fast as my 21yr old son. Last week went to Hythe for 4 days and ate out every lunch time in different pubs and every evening in different restaurants. Really enjoy my food now but miss a glass of red wine with it, that still smells and tastes loke vinegar.
Sue

Sue that is so pleasing to know I am having milky porridge for breakfast and suppose apprehensive about food treating it more like a petrol and fuelling exercise than a pleasureable exercise.

There are some things which are pleasureable but my focus is on vitmains, 80gs of protein a day and 2500 calories, if I can get that right then I can savour my next meal, which seem to eb very close apart, mainly because my body tells me so.

As you say do not rush things I am only one week out of NGTubes, three weeks out of hospital, 4 weeks out of RT.


How do you progress with meals do you cook a little and try or do you force it down? which rarely works. My friend and I have had a great time working on soups at the moment and going to introduce, fish and meat, like chicken to them this week, blended should go really easy.

Nigel
I also had a NG tube, like you I put it off for some time, but the doctors knew that eventually I would have to give in, which I did reluctantly!
Once my tube came it I had no appetite whatsoever, and it is hard trying to eat when you feel constantly 'full',and family telling you, 'you've got to eat', but gradually I started,with the dreaded puddings,soups,custard anything like that as that was all I could manage,even a couple of mouthfulls filled me up.

But it does get better, trust me, my appetite is back now and I was weighed at the hospital on Friday and they were thrilled because I had put on 4lbs!
I still have problems eating bread and chicken, as I have no salivary glands and after the radiotherapy my mouth is constantly dry, but hey if thats the worst that can happen, I can live with it

Best wishes
Tracey

Nigel.... nice to hear from you again mate. You seem to be doing very well by the sound of things....Far better than i did recovering. I was on my back for months and had morphine addiction to deal with but all ok now.
I remember the eating thing well.....it was a sense of duty to my body and little else. Now I eat both for pleasure and neccessity though dry mouth will maybe always be a prob,....and like Sue, wine and spirits taste very sharp and irritable to me. The only alcohol I dare touch is smooth creamy beer like John Smith or Caffreys which goes down well and does'nt blitz the tongue.
I've got a camper too mate, and had a few lonesome jaunts myself to contemplate my experience with Cancer.
One thing i did buy Nigel, when i was struggling with food, was a smoothie maker into which I threw my favourie fruits and made some healthy and nutritious drinks.
Anyway...keep up the progress. Steve.

Hello Steve

I can buy into everything you said, the morphine addiction was interesting comment took me 4 weeks to get rid of the syringe driver, but then spent a real bad week sleeping after.

I am actually scared of alcohol at the moment and would like to have an half of Caffereys, but I think my mind has picked on my love, past tense, of wine as a cause of the cancer, but that will go.

The food issue is spot on, its like a necessity thing and the topping up on ensure plus is dull, unimaginative and bland, but I know they keep me out of trouble.

My taste buds are playing up taste something and think mmmm, next thing 3 spoonfuls later nothing. The one thing I wondered

My camper is like my cave, next week I can sit in the dark read rubbish listen to the radio but most of all be away. My sister will be there with her husband in their van and dogs so its not entirely on my own, but it is away from here, which is a confidence issue at the mo.

The smoothie maker is on overdrive at the moment making some funky soups and fruity bits. I have a lesion on my tounge from RT, its has been checked out but influences speech and eating, but is being keptat bay by lotions and potions.

I know full well im not 100 per cent but I am getting there, some days I just want to Veg which is allowed and some days I have sackfuls of energy.

Good to hear from

Hi,
Jerry my husband would love to have a drink of water. With the complications of the fistula's he is not able.
But he still gets up in the morning and makes Eggs and Bacon and blends it up and feeds it throuth the feeding tube.

Terry

Oh bacon, I can eat scrambled eggs but yet to try the bacon! I always liked it crispy but not sure I could help that, mind you blending it up with eggs does sound scrummy.

Hi Nigel I don't really eat meat anymore, but when I do on very odd occasions try bacon it goes down best if it was well interspersed with fat and not overcooked. I also loved it scrunchy but now crispy scratchy bacon can catch and choke a bit. Fattier bacon as with all the fattier foods are so much more slippery and seem to go down more easily. But it still has slight cardboard qulity as does all meat to me now.

FWIW 3 years on I am seriously having to watch what I eat. I think this is due to my swallow improving earlier this year and suddenly everything goes down twice as fast. Slow eating keeps you slim as you get to feel full. Also you get used to being able to eat anything and not put on weight for ages whilst the body rebuilds itself.

I think recovery is fortnightly in all aspects after rt rather than daily. In six months you will feel so alive again. None of us realise how dragged down we felt prior to surgery until we notice the difference much later.

I don't know about others here, but I do find small infections elsewhere such as a toe infection I had from a ragged quick do take much longer to heal now.