Well it`s nearly 2 since i had the op to remove the cancer and Barratts from my oesophagus. I can honestly say I`m feeling a lot better now but still taking pain killers.
The troubles I have had since coming home, can`t sleep flat so sleep upright with 5 pillows, used to sleep on my left but find that painful. When I first came home the tablets made me feel sick so had to talk another tablet to conteract that, feeling sick made me not want to eat. Loose bowels occasionally, and light headiness if I get up too quickly. Finally still a bit of pain in my right shoulder but apart from that doing nicely, have the odd off day but so far not many.
Food wise, now theres another story, gone off tea and coffee, used to drink gallons of tea. Small sized meals but can manage most things (except curry but never liked it before the op). Bread is my biggest problem that doesnt seem to go down well. Havent had an alcholic drink yet! have really taken a liking to full fat milk....
Saw the consultant a few weeks ago result 95% for a good recovery (obviously he couldnt do 100%) pleased with my recovery and scar healed nicely, next appointment in May 2012.
Lost 3 stone after the op, mostly from my arms, legs upper body and my bum...sitting down for long periods gets painfull (thanks for a soft pad asked for by distric nurse).
Managed to start driving again and getting out doing a few jobs in the garden nice to be out in the sunshine.
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Mick
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And things should start getting even better! Well done!
Losing muscle tone from your backside is par for the course, but as you become more active this will resolve itself. Gentle exercise is a good thing too.
Your taste buds have been blitzed, but your sense of taste should return in due course in a mysterious process that nobody seems to understand.
Bread is often a problem, but try heavy grain bread, pitta bread, or rye bread might which not be so bad - they are low GI.
Losing 3 stone is not unusual - more of a wardrobe problem than a health one really. Do not try eating to regain weight - you'll give yourself more problems than you solve, and maybe being 3 stones lighter is not so bad anyway? Might be your new normal weight?
I lost my taste for alcohol, but after some diligent homework I have now regained the taste for it and will think of you as I sit in the sunshine drinking a gin and tonic - life is a lot better than it might have been!
Congratulations, you are doing so well! If you can possibly get an electric bed you will find it worth its weight in gold! Most people who have this op can never lie flat again because of acid from the stomach being able to enter your new "plumbing" system. It took 18 moths before I could lie on either side and then not for too long. I was on morphine patches for 6 weeks after surgery and then cocodamol for a month but everyone is different. I too lost a huge amount of weight but have put on 11 lbs this year so try not to worry too much (as I did! easy to say but not to do!)) you should regain some in time but the recovery can be a long journey for a lot of us. Theres a section on here of people hints and tips post recovery you might find helpfull incidentally. Enjoy the garden and everyone on here will be sending you their good wishes I'm sure. Take care.
Early days but you are doing extremely well. Regarding the bread problem I found danish bread a great help it is much lighter and easier to digest (also used by weight watchers so labelling may put people off trying it)
Eighteen yrs down the line and I still can't lie on my left side but it's part of my altered life style
Sounds like you're doing really well in a relatively short space of time since the operation. The enormity of what we have been through is quite hard to grasp at times and our bodies have taken a massive amount of punishment.
I have certainly learnt that we are all different in the way the operation affects us and of course, we have different types of disease, tumor etc. in the first place. Plus whether we had chemo, radiation and/or surgery makes a difference too.
However there are general areas of issue that seem to be prevalent in everyone that I've spoken with but no real rule that applies to everyone. It seems to be a case of trying various solutions, recording them (or keeping them to memory) and seeing what works for you.
I'm 16 months on from my oesophagectomy and I'm still learning something new about my body, what to eat, how best to sleep etc., every day. My taste buds have returned thank goodness and I too hated alcohol for a while but that has happily resolved itself now.
I often think back to how I felt a week ago, a month ago, whenever, and am amazed at the progress that I have made during each time period. I remember being so weak after my operation that I couldn't even lift up a toothbrush, that was scary! Over time, it gets better and easier but I'm sure we will have a new 'normal' in the end which will bare little resemblance to where we started from.
I am now in my 15th year of recovery and I can assure you that things get steadily better. I lost 4 stone in weight but put back 2 st so now at a healthier weight than before. I agree with the comments about the electric bed at home but just use plenty of pillows when away from home. Agree with the comments about sleeping on your side - uncomfortable sleeping uphill!
Just remember that you will not get back to full normal and learn to live with it and you'll be fine. I managed to cope with a full time job after 6 months recovery until I had to retire at 67 so prospects are good.
great news that the op is over with and now it will be recovery all the way. I did have a wry smile about the tea..my surgeon Nick Maynard said to me in hospital 8 days after the op..Bernadette you can have anything you want, what is your wish..Oh a cup of tea was my reply..well a cup of tea was produced and it tasted like sawdust, I had never tasted anything so vile in my life. Even at home it was horrible and I switched to camomile and herbal teas, I think it took at least 4 or 5 months before I had my beloved tea again and gradually my taste for tea has come back, but sadly I cannot have alot, have early morning which is the best cup of the day, 1 middle of day and maybe 2 (if I'm lucky) before dinner in the evening..if I have one after dinner it comes up again. I think I cannot cope with the milk in the tea, but there you are loving milk. Folk say 'have a cup of tea' but sadly I have to say no thanks I'll have a weak black coffee. It'll be 4 years in August for my op.
Sounds like you're doing well. If you don't want to go to the expense of an electric bed try placing Argos catalogues under the head of the bed base.
I have two under each foot and they have stopped my acid reflux. Foodwise it's early days yet. Trial and error is the name of the game. You'll find what suits and what does'nt. Good luck.
Many thanks to everybody and their comments, its nice to know that i`m not the only one going through this. Gives me a boost to read how well you have all progressed through this.
Forgot to mention that, in a way I was very lucky that they found the cancer due to the fact I was having 2 yearly endoscopes for `Barratts` Because they found it early enough I didn`t need to have Chemo or Radiotheropy. From being dignosed on the 16th Dec `11 went in for the op on the 1st Feb `12, no complaints from me about the NHS.
To everybody I wish you all the best in the future.
Really good to read such a positive account of your first couple of months. I had mine 2 years ago on the 20th March, No real issues just learning curve ones. less than 3 months after mine I was camping on the Isle of Wight and then we went up to the Shetland Isles all with no ill effects. Like you I didn't have Chemo or radiotherapy, they could only offer me the cold steel approach as the therapies would do me more harm than the cancer.
It gets better. Had my op in May 2011. Like you had to sleep propped up, but I am now back to sleeping normally, even on my side. Like you certain Tea & Coffee tasted strange, bit like sucking metal! Now drink tea, but can only drink real coffee, instant still taste foul. Had similar problems with wine but started drinking wine again a couple of weeks ago. My only real problem now is stomach cramps and the occasional case of being sick in the middle of the night. Have narrowed the sickness down to eating deep fried food, fish & chips for example. Still trying to find out what is causing the stomach cramps, but this morning had a "light bulb" moment and after reading a couple of blogs on here I think I am right - corn flakes.
My only real problem is when I get a cold it knocks me sideways for a couple of days. I had to undergo chemo pre op to reduce the size of the tumour so that they could operate and I think this has caused my immune system to be shot to pieces. Apart from that feeling great and glad to have my life back.
As I said it does get better, every day is a step forward.
I keep trying the odd cup of tea but it still doesn`t taste like it used too, haven`t tried any alcohol yet, time will tell.
Strange how different we all are but still have things in common, although some foods seem ok for some but not for others. Unlike you, cornflakes don`t cause me any problems, been eating them every morning since I came home, changed a few days ago and have now started eating rice crispies. One thing I do have trouble with is, quantities, if I eat too much at meal times I feel bloated and uncomfortable for several hours. Still getting used to eating enough but not overdoing it.
I don`t think I mentioned it but, in a way I was very lucky that my cancer was found early, due to having regular endoscopes for `Barratts` because it was found early I didn`t have to have Radio or Chemo.
So far so good, slowly building up my strength, driving again, eating most things, decided after the op to take each day as it comes and to look forward to each new day.
You're doing great! As for the bed, used to prop it up with some books in case I slid off the pillows at night. I tend to use 3 or 4 pillows but always wake up with just one. A couple of things help me to prevent reflux at night. Firstly I drink some water before bed to wash everything down. I especially do this if I have had a late cup of tea, otherwise I find the tea irritates my stomach.
I was on quite a few medications when I first had the op. I have managed to wean myself off them over a number of years, it was a long process.
Hi Jay, I`m down to 3 pillows but I toss and turn quite a bit and end up with 1 or 2 pillows. Still can`t find a comfortable way to sleep, after 50+ years of sleeping on my left I find it hard to sleep in any other positon. Sleeping on my right side makes my shoulder hurt, have managed to get a few descent nights sleep.
Will keep you updated as I`m back to see the consultant again on Wednesday.
Hope all went well with the Consultant Mick? How did you get on?
PS. After nearly 2 years I still cant sleep on my side and get shoulder pain if I try! You can console yourself with the thought that sleeping on your back, you get far less wrinkles apparently:-).
Well yesterday it was back to see the consultant (just over 3 months post op) the 1st thing he said when he saw me was `you are looking really well` we had a chat about my weight, diet, how things were going and then I started to ask questions. Mainly because since the last visit I am now more `with it` and want to know more, it turns out it was T1 cancer so they removed part of the stomach, the Barratts and part of the oesophagus with the cancer. He examined my lower abdomin and the scar on my back. Once again he said that things seem to be going ok and he would see me again in 3 months time,
The subject of OPA came up and we discussed various things and one in particular was that many people have been through this same op who have similar problems so its good to share our thoughts and feelings.
On the home front, I only work if I`m phoned up to do a job (locksmith work is very quiet in a rural area). I took early retiement 3 years ago (@55) but now 3 months after the op I am out doing a bit of DIY, gardening (grown loads from seed dont know where I`ll put it all) gone back into Scouting and now starting to make a dolls house for my granddaughter.
Admittidly I am only 58 but the answer is to stay positive, from the very start when I was told I had `cancer` I said OK now I`ve got it what do we do, lets move on and beat it, its not going to get me down, lets take each day as it comes.
Finally my one big boost is to hear how some of you are doing so well post op, it does help to lift my spirits. My thoughts are with you all.
Glad it went well Mick and you were able to talk more about your situation. Always difficult if you are in shock, doped up or both!
I had all my oesophageous removed and half my stomach. A real plumbing experience! I take a day at a time now, some are better than others but I count myself as very lucky to be here regardless. I wont pretend its any easy operation for any of us because it's not and there are changes that have to be dealt with on a daily basis but.......we have tomorrow which is brill. Best wishes Mickl, you are doing so well.
I think this forum is amazing - I've currently just finished my first round of pre-op (hopefully) chemo out of three and I'm still hopeful that my second scan after my chemo will show that I'm operable.
All your comments have been amazing on here regarding life after the operation because I'm only 27 and was worried what my life would be like after all this.
I know the next few months are going to be tough for me (I'm on a three rounds of chemo - operation - three rounds of chemo treatment plan at the moment) but I've tentatively worked out that my brother's wedding is three weeks after my last round of chemo so that's definitely something to look forward to.
This cancer has nothing on any of us - it should have thought twice before it picked us to mess with!!
Try to get help and elevate your bed at the headboard ,8" or so.
Pillows make you bend in the middle. If you can't sleep on your left side, angle that way. Little snacks instead of meals. Less onions and tomato. More mushroom sauce types. Tea early, not late. My doctor said"no oil, no dairy, no meat, fish,pork or chicken" and he is a world famous endocrinologist. It's not vegetarian it is plant based. From engine2 diet from a Texas fireman.
I have had the same problems that you have, lost 3 stones, sore bum having lost the natural padding, luckily I have an adjustable bed. Chest pain down my right-hand side due to op scars, loads of eating issues. Had a throat dilation at my hospital yesterday. Everything now going really well. Keeping fit is one of the secrets. Two scans later and all clear so far. I Can really see the light at the end of the tunnel now. Alan is quite right about not fighting the eating problems.
Glad to hear things are on the up for you. I`m now 7 years post op, still have the odd problem. Brain still tells me to eat a bit more only to regret it later. Or `fish and chips` tend to give me dumping later, but hey ho its one of the problems I have got used to, still like to indulge now and again. Nearly everyday I go for my morning walk and stay active still working part-time or pottering about in the garden or garage. Best thing is being 7 years down the line I have 3 grandkids, been on 6 cruises, 1 family holiday, 2nd son moved out and got engaged. I`m enjoying being semi-retired, and earlier this week celebrated my 65th birthday, even though I won`t get my state pension and bus pass until September. Hopefully here`s to many more years, after the op things seemed strange and difficult but day by day things get easier and days turn to weeks months and years. Best wishes to all those who have gone through the op. Stay positive and take each day as it comes..
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17 months post op
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