Has anybody had radiotherapy after the ivor lewis procedure

[maria2011]

[Charlie36]

I haven't Maria. I can empathise with the weight loss though, I went from a size 14=16 to a size 10 and weigh less than 8 stone. Several others on this site have similar problems with weight and eating. Had my surgery in June 2010 and some days are still better than others BUT still here thank Heavens! Sounds as though you have had the full works! Best of luck, its still very early days for you since the op. It all takes time for the body to recover especially when you have had the other treatments too. Hang on in there!

Charlie.x

[maria2011 in reply to Charlie36]

Hi Charlie thanks for getting back. Yes weight loss is a real issue. I am now a size 6/8 weighing 44.4kg. I just feel so tired all the time. I have not got out of bed since I left hospital 2 weeks ago, it seems everytime I move I'm sick, it hasn't helped that the op combined with radiotherapy has left me with a frozen shoulder....I struggle to even dress myself. I just feel so down at the moment, because before the radiotherapy, within weeks of having the op I was driving, walking doing a bit of cooking etc and now I feel worse than I did after op. I know I shouldn't moan coz at least I'm still here....I just feel rotten.

xxxx

[yorkshirerose]

Hi Maria

Poor you I can sympathise although I didn't have radiotherapy. I think the tiredness comes witht the weight loss, and not always eating the right foods to give us energy. I find I forget to eat so the spiral begins. And even when I set the alarm on my phone to remind me to eat I dont feel hungry so......

I also developed a frozen shoulder I was told it was due to laying on it for so long during surgery. I spent a miserable winter stuck at home unable to get out, I was booked in for a manipulation where they release it under anaesthetic, luckily for me it began to 'thaw' and I now have good use back.

You have every right to have a moan Maria, you have been through a lot so be gentle with yourself and stay in touch, we have all been there, so we know what you are going through

Edwina XX

[maria2011 in reply to yorkshirerose]

Hi Edwina

Thanks for your reply. The physios are coming to the house on wednesday to start me on exercises to try and release the shoulder......not looking forward to that. When they came last week to do the assessment I was sick 5 times due to all the moving about!!! I've gone back to eating sloppy things, smoothies, soup and the like in the hope that it will get to my intestines quickly, that way at least I get some of the vitamins etc, before being sick.

I think that the sickness that I'm experiencing at the moment is radiation sickness as I'm waking up during the night and retching for 5/10 minutes. Oh well they did say that there were side effects and that they would last for approx 6 to 8 weeks......only another 3 to 5 to go!!!!!

Maria xxx

[liz_crisp]

Hi Maria,

I had chemo after the op in 2009 and felt awful, but it does get better. I found writing a diary each week of the things i could do helped as I began to see how i was improving rather than how much I still couldn't do.

It is a long haul and a big learning curve but well worth it

Good luck Liz

[maria2011 in reply to liz_crisp]

Hi Liz,

Thanks for your reply. I will try what you have suggested.

Maria xxx

[Hidden]

The shoulder problem is a common one, and, as Edwina says, it is because of being placed in a very unnatural position for so long during the surgery. If you can summon up the energy, try and gently exercise it. A physiotherapist may be able to put it right.

The whole thing is an enormous shock to the system, and your body consumes a lot of energy in simply healing itself, so don't be surprised if there does not seem to be any left!

Do not worry about your weight, but do try and get some nutrition, perhaps with the high energy-type drinks if you can find one that you either like, or do not mind too much.

I do not think it counts as moaning if you are simply telling it like it is!

Radiotherapy and chemotherapy kill off bits of your body (ie the tumour and bits immediately round it) but sometimes it feels like it kills off more than it was aimed at! But things do get better.

Try and find something that you can tolerate eating, even if it is only biscuits. It is almost as if you have to train your body to eat again like a baby learning to feed.

Feeling low / bloody awful for a while is common as well; so it is not just you!

[maria2011 in reply to Hidden]

Thank you Alan,

My friend must be on the same wave length as you.....she turned up yesterday with an arm full of baby foods!!!!

I do try to remain cheerful just every now and again I hit rock bottom.

Maria xxx

[BRUCE]

Hi Maria, After chemo last Sept & Oct I had my operation in Dec &made slow but I suppose steady progress,the surgeon said my tumour had been nasty instead of asking more I joked that were all nasty but next time I went to the hospital they advised radiotherapy to make sure. This took place the last 2 weeks of march last treatment April Fools day I staggered to bed thinking a few weeks of tiredness would follow but it went on I thought it was getting worse not better. I am a diabetic & my tests showed my blood sugar good but found despite eating the small portions I could manage taking my glicazide I became tired which I was blaming totally on the radiotherapy. Having cut out most of my tablets which the doctor agreed with I progressed & am now gaining weight with suppllement & tablets to help my body absorb the food I eat. While you may not have the problem with diabetes it is important to get your body to retain as much nutrition as possible I got far to weak which made my recovery slower but our new bodies take time to adapt I know I will not be as fit & well as before cancer but I promise it does get better but it takes so much longer the hope.I hope my story encourages you & not otherwise but we have to take every day as it comes with every step forward as a leap knowing its a long road. GOOD LUCK FOR THE FUTURE BRUCE xxx

[maria2011 in reply to BRUCE]

Hi Bruce

Thanks for your reply. I am glad I'm not the only one that struggled with the radiotherapy, I don't feel like I'm being a big baby!!!!! Yes I think being so weak is making my recovery a lot slower too.

Take care

Maria

[Hidden]

Always worth getting your mineral and vitamin levels checked as well, especially if you have lost quite a lot of your stomach, as vitamin B12 & iron levels won't keep up the same.

[Charlie36]

Hi Maria,

Alans point above is really important to do as anemia can just creep up and add to the fatigue and tiredness, did with me anyway but responded to medication and didn't need injections. Re: food. I tried the milk/soya based perscribed liquid supplements and loathed the taste! Ensure etc Just the smell made me feel sick!. I finally experimented and used full cream milk mixed with Asda's diet powder in coffee flavour. Sounds odd but it has all the vitamins etc. in and when made up has over 300 cals a glass. You can add extra milk powder if you can cope with it. Tastes excellent especially really cold. I also use Belvita biscuits a lot. These have a low GI, very thin and light but 4 add 250 cals.Some of the Heinz big soup range are quite good and come in about 200 cals each. Chilled mash warmed through with cheddar cheese and crackers with butter and marmite can go down well too. A warm wheat bag might help ease your shoulder and clothes you can step into rather than pull over your head would be easier for you. Also a hair style you don't have to wash or blow dry too often, Do hope things improve for you really soon, its a hard road to walk down, don't worry about moaning! You have every right too! We all do! Better out than in! Sending a large ( ).

Charlie x

[terryb]

Hi Maria- I did not have chemo or radiotherapy after my op.

hope you are feeling a little better with the side effects minimising, Everybody tells me that this op takes a long time to get over. I thought I was doing alright - 5 months post op- but feel in the last 3 weeks I have gone backwards where I feel exhausted again and get breathless from doing very little and I have now been told I have a frozen shoulder. It is agony particularly at night time,

Do you feel the TENS machine is still helping? How long do you use it for and how frequently? Is there a particular setting you find effective?

I had 5 sessions with a physio but she says the pain is so bad she is limited to mainly ultrasound and things to try and ease the pain

I typed " frozen shoulder exercises" into google and there were a number of video clips showing appropriate exercises - going to try some .

Just today my GP phoned to say to arrange an appointment to have an injection in my shoulder to ease pain so more exercises with physio can happen. Heres hoping as the pain is getting worse by the day.

Best wishes

Terry

[maria2011 in reply to terryb]

Hi Terry

The side effects are diminishing thankfully, but weight loss and breathing are still big issues. I went to the hospital on Friday to have a nasal gastric tube fitted by an endoscope. 4 hours later at home the feeding machine wouldn't work, the tube appeared blocked, We telephoned the doctor who asked us to come in the next day. Saturday morning off I go back to the hospital,they pulled the tube out to find that it had somehow knotted itself!!!!!! Nobody had ever seen anything like it. Anyway I'm back at the hospital again tomorrow for them to have another go, as my weight is now 43kgs.

The shoulder is still painful when I try to lift it, dressing and undressing is a nightmare I have to have help, it's so frustrating. The TENS machine is good. I use the pulse setting as it gives pain relief for a few hours after it's been turned off. I use it at night for 30 minuets. I too have exercises to do (polishing the table being one of them) it hasn't made any difference, and like you it's too painful to do.

I'm having an MRI scan on the shoulder this Sunday, so the orthopedic surgeon can get a better idea of which route to take, an injection was mentioned if physio didn't work.

Hope you get some relief with your shoulder soon. Don't worry too much about being so tired, it is early days for both of us....there is a lot of healing going on inside our bodies, which takes up so much of our energy.

Take care

Maria