Awaiting Surgery

Morning Everyone - I am new on here but finding so many current and past posts helpful. I am a 43 year old mum of two who was diagnosed with Cancer of the O in November 2016. After a variety of procedures they have now decided to do an esophagectomy on me at the end of Feb. I can't lie that I'm not apprehensive and nervous, particular more about the unknowns after my surgery, and how I will cope with my recuperation especially having two small children to care for. I have found some comfort reading peoples posts on their own personel journey post surgery and have seen the light at the other end of the tunnel. They are planning also to remove my chest lymph nodes at the same time. I've not gone down the route of chemo until they can assess whether the cancer cells are present in the lymph nodes- if so that will be my next port of call. I am hoping that won't be an option and that surgery will remove it all (I'm trying to stay optimistic). I would be grateful however for more of your advice on how to cope post-surgery especially with the 'dumping syndrome'. What foods to maybe avoid and anything else that might be helpful to know post surgery. Also can you tell me if your sensation for 'hunger' goes after surgery? Many thanks in advance.

79 Replies

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  • Hi, I think if you receive a number of replies they will probably all be different. I can only tell you about my experience. I had my op in November 2012 and not wanting to dress it up it is a long hard road to recovery. I've only suffered two bouts of dumping, I think due to overeating. I no longer get the hunger feelings so have to eat by the clock. It takes some getting used to but becomes normal in the end. The good thing is I can eat anything at all so long as it is in small amounts. Good luck and feel free to ask anything at all. James.

  • Hi James thank you so much for your reply, its really interesting for me to hear your experience. I am mentally trying to get my head round it all to be honest and not get myself into a state before the op. Can I ask how you slept after it - I am front sleeper and worried that I will never be able to sleep on my front ever again. Thanks Jo

  • I used to be a front sleeper, and I'm sad to say that is just not possible now.

  • I am afraid sleeping on your front is out of the question. I have to sleep on my back with a V pillow to prop me up. Again it is something you get used to because I used to sleep on my front also. Try to stay positive because there is light at the end of the tunnel.

  • Worth - I'm so happy you said that although I love sleeping on my front I like to sleep on my side especially close to my husband - I suppose I just want normality to resume and worried it won't .

  • Dear Jo,

    I had the op in 2015 and for about 5 months found sleeping at the prescribed angle in a reclining chair worked best. Also workable was a 3 piece folding foam device that goes on top of a bed that has a wedge pillow and more importantly bends your knees so you don't slide down flat while asleep. Encouragingly though I found a 10 percent angle would suffice after about 8 months (double a pillow up) and I could comfortably sleep on my left side spooned with my wife. Worth

  • Hi Worth, where did you get your 3 piece wedge pillow? My husband has a wedge pillow but does slip down. Alison

  • Allison,

    I am away from home for an extended period but am getting the housesitter to look for it and get back to me. Hope to have an answer for you in a day or two. Worth

  • It is called a ContourMax and you will want the larger size. When I bought it, it was a somewhat high $250 but worked better than anything other than a reclining easy chair in terms of keeping you in the right position all during sleep. I found I didn't need it anymore after about 4 months and could sleep in a bed with a doubled-up pillow that provided about 5-10 degrees elevation. Could even sleep on my side, which I had done before the operation. Good luck. Worth

  • just to say... wishing you all the very best xx

  • You really will need help with the children, you just won't be able to give them your full attention.

    Dumping can be a problem, I find it's hot or very cold food that makes it happen to me. And when it does happen the low blood sugar forces me to lie down, and if it's a bad attack, I fall into a deep sleep. (Not good if you're looking after children)

    Sorry to go on about children, but I'm being climbed on by 2 great grandchildren at the moment. But my op. was 7 years ago.

    You will find when you're in hospital after surgery, that you have a lot of regurgitation. Food and mucus coming up. You'll be given paper dishes to get rid of it. When you get home you'll need something for the same thing. I've got a bright green plastic bowl that still lives by my bed for occasional emergencies. I know that someone on this site has a child's pink bucket!

  • Thank you for your message - I think I have a steep mountain to climb but its good to know you and others have got through it and coping fine - I suppose it's going to be trial and error and seeing what works for me with food eventually. My husband has taken leave from his job to take care of us all, that in itself will be a challenge. Can I ask if you have any special supports in bed - I've heard a lot about these wedge pillow and bolster and wondering if I should get myself one.

  • Wedge pillows don't work for me, I slide off diagonally. and end up lying flat across the bed. And lying flat means breathing in stomach contents. Very, very unpleasant and scary. I've done it several times in the past, before I got organised.

    I have 8 ordinary pillows, not on top of each other, but put at different angles to make a nest for my head, so I don't move sideways, and 3 pillows high. And another pillow under my knees so I don't slide down the bed.

    I know many people like the electric beds, but they remind me of hospital, they're depressing.

    Some people raise the head of the whole bed but again I know I'd just slide down. My pillows work for me.

    Why not experiment with the whole families pillows before you go into hospital?

    I'm very glad to hear your husband will be around to take care off you all. It's a huge op. but we're lucky to be well enough to have the surgery.

    Please ask anything at all. Don't forget a pink plastic bucket!!!

  • Ha I thought the same when people spoke of the electric bed - I'm not planning on going down that route just yet I don't think my husband would be to happy about it plus I want to try and live the rest of my life as normal as possible- if that makes sense.

  • With my 8 pillows I have 8 different brilliant pillowcases looking gorgeous. So I feel like a person, not a patient!

  • My personal experience is as follows, before my op I went to get a reclining chair, the best and most comfortable I could afford and boy was it worth it! Immediately after surgery I had a reaction to the morphine convinced that the world was out to kill me and the operation had been a plan to get me into a vulnerable position, (ex serviceman with a history) in the main I think this was because I was told that the self medication would take the pain away and it didn't, indeed I felt at times it made it worse so I refused to self medicate. Thankfully my wife was phoned and calmed me down and after changing me to a non opiate option I was fine. I left hospital a13 days post op and I slept downstairs in my chair for about 3 weeks, I moved upstairs to sleep 'normally' but as most people found some difficulties with slipping down the bed, after various pillows etc I found one from dunelm (costs 34.99) was the best one for me and that along with 3 other pillows stops me from moving in bed. I returned to work in less than 3 months albeit one day a week I feel your recovery will likely take longer as I had no children around me which I think I would have found very tiring in itself. I am now 7 years post op, while I did return to work I have since 'retired' and have learnt my new limitations (not easy when you are me) I still get the odd dumping syndrome, I still get some pain where the rib was removed etc BUT I will also say that the alternative is much worse. Yes it is a long road you are on, some 'speed along it' and some take the slow route, but not feeling hungry for 7 years and a bit of discomfort now and then is a small price to pay for the benefits of seeing your children and grand children grow up. If you want a chat feel free to say so and I will happily call you. Life post op is good, it's not always easy but by god it's good!

  • Yes, I remember well being terrified of the surgery and the subsequent after-effects of it! I hope you will have the minimally-invasive surgery, which is much easier to recover from. I had a feeding tube for about six weeks following my surgery (j-tube) so came home from the hospital with home-delivered equipment and cans of nutritional liquid which I only had to be hooked up to at night. I hadn't even been warned about the 'dumping syndrome' but found out quickly that eating anything with much sugar would cause it. Almost a year later I still can't eat anything with more than about 12-15 g. of sugar so have to check the labels on everything I buy at the grocery store, which I never paid any attention to before the surgery. Some people are sensitive to dairy products (I never drank much milk anyway). I can eat cheese, but have to do so in moderation. For some reason, which no one has been able to explain to me, I can't eat fatty foods either, so getting enough calories in my diet is a constant challenge. I haven't heard of anyone else who has that problem with fatty foods, so you likely won't experience that.

    You'll likely be given information by your Dr., and start out with a soft-food diet. Here's a couple of links, though, with some helpful information:

    stanfordhealthcare.org/cont...

    oncolink.org/support/nutrit...

    Following the surgery I no longer got the 'hunger pangs' that informed me that I needed to eat, and since half my stomach was removed I was limited to smaller meals and was advised to eat on a schedule of every 2 1/2 to 3 hours. I still forget to eat sometimes, but try to still do that as I am trying to maintain my weight, and hopefully gain back a few pounds.

    I wish you luck with your next steps and your surgery!

  • What can I add we are all so different. This site is here all the time so take one step at a time and tackle the problems as they happen. The ability to stay positive is important. The support of staff and friends will build up behind you, something that I can remember to this day. ( I am now 23yrs post op and still going strong). The family went through as much trauma as I did so I hope they have good support as well. Best wishes to all of you as you start this journey sally

  • I'm four years post I L and still working at 68, the only pain I had after the op was the j tube which I had about five months, I had to have it re- stitched five times, when it finally went I gradually got my appetite back the same as before. I do sometimes forget myself with the sugar and carbahydrates and getting dumping which I overcome with a cold drink, an apple and something sweet, the worst thing is in my opinion night time bile reflux which is extremely unpleasant , that I have just discovered is caused in my case by alcohol, since the 1st Jan I have had no alcohol and no reflux even though I wake up dead flat to the bed . All the best to you, keep positive.

  • Thank you everyone for responding I'm learning so much from you all about this procedure and how you are all living life after it, it's important for me to hear from people who are living through this. I heard so many horror stories and saw some not so good statistics about post op patience that I was getting myself into a flap - I'm trying to get my head around not being as active as I was for a while. It's been daunting for my husband to who is currently serving and in the military. His work have been phenomenal and given him the time he needs to be with us- I'm so use to being independent and doing everything because he's away most of the time - and when not in deployment he lives away from home on base mon-fri. I know I will need to lean on him. My boys are 9 and 5 and the youngest doesn't have a clue - my eldest knows I'm going in for an operation and that I'm not well- again they tend to live for the here and now esp as I look ok and doing everything life appears as normal. I have so many silly questions that keep cropping up in my head all the time. I've asked that my husband not to bring the boys to see me with tubes etc in whilst I'm at my worst - maybe closer to the time of going home with drains removed - I just don't want to scar their memory of me being sick and looking like that. I am also worried about the morphine I had tramadol a while back and just spent the time throwing up- I will remind them of this at my pre-op appointment next wk. Do any of you use a v cushion or a bolster - I'm off today to try and stock up on cushions - I had a look at dunelm but didn't see a wedge pillow. I will have a look at the recipes - I use to love cooking for the family and worried that my love for food will disappear with my stomach at the same time :( . Did most of you lose a lot of weight after your surgery or have now managed to stabilise?

  • I was 32 when I was diagnosed and I did not become a mother until after treatment. My son is 6 and my daughter 5 now and next Thursday will be 10 years since my surgery. I have told mine always about my cancer, they can see the scars...I am still here and loving being a mummy.

  • Sorry, I got up late and husband is taking our two to the dentist now. I had 20 lymph nodes removed during the surgery. I had chemo prior to surgery. I had a lot of serious complications post surgery but I did get out of hospital within about 2 months, sorry, I forget most of it.

    I was not able to do much for about a year but a year out of your life is not that bad. I started trying for my children just after 2 years post surgery.

    You will learn what suits you and over time you will be able to eat a lot more.

    My children are used to both their parents getting ill a bit, my husband has crohns and I have type1 diabetes and a few other things apart from being a 10 year survivor.

    Best wishes,

    Aoife

  • Wow Aoife that is definitely one journey especially as young as you were at diagnosis - and then to go on and have children. I sometime joke around with my husband about what life will be like for us after but I think its my way of coping with things and the stress to jest! I know this is no light hearted matter and what are my options to be honest there is none- either I have the surgery and live or don;t and die from the cancer. I want to live and see my boys flourish - they are my world. I think when you are given the choice of life you'd do anything to keep it. All that keeps going through my mind is I'm going into hospital able bodied and then will be coming out debilitated. I don't do sickness well as you know as a mum you need to sometime just get on with it for the sake of your kids when you are. My poor husband will realise what a bad patient he has on his hands!

  • My husband had his op last July. We've experimented with various pillows including the V. Everyone's different of course but he found the V useless. The wedge has been really good. You can get them from loads of places including Amazon e.g Adult Reflux Wedge Pillow for Reflux, Heartburn & Indigestion - Standard Rise

    Adult Reflux Wedge Pillow for Reflux, Heartburn & Indigestion - Standard Rise

    by babyREFLUX

    He can now sleep on his side but for the first 6 months he was on his back.

    He never feels hungry and struggles to eat the 6 teaplate sized meals each day but he does really enjoy 3 of those meals. After the op he went on to being fed via the Jejuge. That lasted for about 4 months. I did worry about the fact that he often forgot to eat during the day (I was back at work 6 weeks after his op) but the liquid food that he received via the tube every night ensured that he had enough nutrition. During the first few months his tastebuds had changed but now that's pretty much back to normal.

    You will be very tired after the op. Again that will be different for every person but for Alan he stopped having an afternoon nap around 6 months after the op. Now he's getting more active via walking and cycling, often requiring more rest for the two days following a bit too much activity. But it's clear that his energy levels are gradually building.

    You will be fine with your boys. They are old enough to understand that they can play a part in looking after Mum as she recovers. For the first 3 months your recovery may seem very slow but after that it's almost as if you change gear and recovery speeds up.

    best wishes for your op and speedy recovery

    Alison

  • Hi Alison thank you for message - I feel I'm now prepared to get this part of my life over and done with if that makes sense, and just get on with my recovery - I think I need to start learning to be kind to myself and realise my recovery will not be overnight. I've managed to get myself a wedge and some other cushions for when I'm home - I'm going to miss sleeping on my side or front- worried that might take getting more use to.

    I have the nurse arriving today to talk to me about my feeds and jtube, it still all feels very surreal - tomorrow morning I go in so I'm sure the nerves will kick in then.

  • I think that you have to get used to the idea that recovery can take a long time and that you will not feel the same level of energy. On the other hand complications are not compulsory, and some people get through things very well indeed, and have babies afterwards.

    You can try to get as fit as you can prior to the surgery. The extra fitness does help. And, subject to your normal diet, you might try getting used to eating as if you were a diabetic. The food that is loaded with sugar might well cause you problems afterwards. There are factsheets about dumping and low glycemic food on the OPA website.

    opa.org.uk/pages/factsheets...

    And do think about an OPA group if you have one reasonably near to chat to others who have come through it all.

  • Hi Alan Ilooked into an opa group but unfortunately there isn't one near to me and is quite a distance away, I'm located in Cambs. I definitely think you're right I need to change my mindset and start cutting out the sweet things. I have a terrible sweet tooth- and at the moment as I have a stricture the only things that I seem to swollow well is the sweet stuff.

  • It might be that the texture of some foods dictates whether you can swallow well? At the moment you need to make sure you take in the right nutrition as the priority. It is worth exploring some of the alternatives though if you have the energy.

  • Yes you're right - I can't eat breads or anything dry like meat pieces they just hurt, cause burning and I regurgitate leaving me in sweat, pain and breathless. Its certainly effected what I cook and prepare for the family and myself seperately.

  • I had my op 7 years ago and am living life to the full. Alan from OPA always gives excellent advice and though it is a long journey it sounds as if you have a supportive husband who will help you through. I have just read your story to my husband and he says (from his experience) if your husband ever needs to speak to someone about how to help then he would be happy to be there for him. I can give you contact details if you wish. I was not a good patient having like you been quite independent. Good luck and best wishes

  • Hi thank you so much for the offer of advice - hubby has been with me ever step of the way and I've been keeping him informed of all the message on here. like you said it's not just us going through it, it's our family going through this as well- I don't know how to get your details from here can you send people personal messages thank you again!

  • I am not sure how you can send personal details. One thought was if you are able to tell me your hospital date I could maybe write to you there with our details so if you or your husband wish to be in touch we would be happy to hear from you. Very best wishes. XX

  • Hi Yes I'm going to be having my surgery in Addenbrookes on the 21st Feb.

  • Do you know the name of your surgeon? This might help to ensure any communication from us will get to you. Be assured that Addenbrokes is one of the best and I am sure you will be in good hands. With very best wishes for a speedy recovery, there are so many positive stories on here that should help you stay postive! XX

  • I am Brenda Nicholls by the way - though I do like champagne I actually prefer Prosecco! The user name came from wanting to celebrate my recovery

  • Brenda - actually you prompted me to ask a question about drinking - are you still able to have alcohol after this procedure albeit a small amount. I am wondering about social events etc?

  • I absolutely can, as you say in small amounts. I was never a big drinker but am able to have a small glass of red wine with meals and can drink a glass of Prosecco (usually with a snack) - The alcohol does get into your system quicker(for some reason white wine is like that for me) so advice is small and where possible with food. I just had another thought are you on facebook? If so if you wish we could send private messages through that.

  • Like you I'm not a big drinker more a social drinker - I've not had wine for a while due to the acid but I do like a g&t etc My Surgeon at Addenbrookes is Mr Safranek he qualified in Southampton. Yes I'm on FB will look for you- where abouts in the country are you?

  • Thats good. Facebook says I am living in Durham - I was born in Durham (but Im living in Surrey at present) It might also say I am working at University of Cumbria. I havent updated my profile for a while. I did have my op in Cumbria and they were a great team. I am sure a G&T will be fine in the future. I look forward to hearing from you on facebook.

  • Hi Brenda I can't seem to find you it might be easier adding me Jo Fillmore.

  • Found you!

  • Hi there, i had my op last March. I spent 2 1/2 weeks in hospital 5 days in critical care. The staff were fantastic. Yes there is lots of tubes if you have Ivor Lewis including one from your nose which doesn't look good. I did everything i was told. Your will have a large scar down your shoulder under to your breast. I also had one from mid ribs to belly button. You will come out also with a feeding tube but mine wasnt being used once i left hospital but stayed in place for chemo 3 lots to mop up. You will need help for at least 3 months if not longer. You will not be able to lift anything heavy. You will find out who your real friends are, who will be there for you and your children. Don't be ashamed to take up their offers of helping out. You have to learn to eat again this will all be explained its like weaning, fluids, purée, soft food then normal small amounts. Yes you don't feel hungry you make yourself eat at certain times. Dumping i get if i have certain foods, too much sugar or fat. Eat early at night like the children. You need to stay positive. I wish you Luck. Dunelm do a nice v teddy bear pillow i use this and 3 other pillows and lay on back propped up.Debbie

  • Thank you Debbie - it's all baby steps isn't it especially after major surgery. I've not had any type of surgery before - other than having kids. I absolutely hate hospitals but absolutely admire the staff and the job they do. I never thought it as the weaning process that is so true - starting from scratch again. I've been trying hard to stay positive but then the seeds of doubt as its gets closer tend to appear and take its toll on me. I am also currently doing a course one weekend ever month - I signed up before my diagnosis, 2017 was going to be a life changing year for me - its certainly going to be that alright! I'm hoping the focus of the course will help me keep my mind active.

  • When Alan was diagnosed last February the professor told him to look upon the next year as preparing for a marathon. That's what we've done. Last February we had planned to visit my friend in Spain but cancelled after being given the diagnosis. This morning I'm typing this reply from my bed at my friend's in Spain, Alan sound asleep beside me having eaten rather well last night and enjoyed just a little bit too much Rioja! We are a year late but we are here now and the sun is shining. Alison

  • What wonderful news Alison that's made my evening - we to are planning a sun holiday once I'm on the mend - something to aim for you could say! Here's to new beginning- have a great holiday x

  • Hi Scrum - your remark about going into hospital feelikg ok and coming out disabled in a way ,really resonated with me .That thought really upset me too!

    Everyone is different ( how mad did that remark make me when I was searching for info ! ) but my experience of the op and afterwards was really ,honestly ok .

    I think the night before the op was the worst but afterwards

    good - wrapped in a drug haze

    fantastic care ,it's a complex procedure so you tend to have v experienced and interested staff

    no thirst or itching ( I was worried I'd be unable to quench a terrible thirst post op ) but you're on a drip and rehydrated ,not worried by little bodily irritations

    ok - removing stiches which are actually staples ,but no pain ,ok removing nasal tube thingy which was put in during op so again no pain

    - swallow test ,very gentle ,very careful ,kind staff .worst bit was being wheeled there by a rather bored porter

    - jej tube and feeding at home .not as bad as I thought ,I did v slowly only at night

    not so good - some explosive bowel action in hospital when I was a few days post op ,no inco pads ,or only huge nappy ones ,available in hospital .Kind friend dispatched to buy Tena max for those ,is it wind or something worse moments !

    - coming off the tramadol at home ,no one warned me to taper dose and I had horrid night time side effects .

    I recovered well ,a lot of pacing myself but it's amazing what you can do . I was v worried about mobility ( access to our loft conversion bedroom definitely doesn't meet building regs ! ) but was ok . Would have liked some kind of aid to help with positioning in bed for first week or two

    ? low tech rope fixed to bed foot board

    completecareshop.co.uk/beds...

    or higher tech

    completecareshop.co.uk/beds... like this .My brother crafted his own when afflicted by other injuries .

    I've got loads of pillows and make a nest - ones under your knees /thighs are good to stop you slipping down . A folded up duvet on top of one of these

    completecareshop.co.uk/beds...

    is good .

    I agree that raising bed head and wedges didn't work for me .And you may need something firmish and soft to go under your bottom ( memory foam ? ) as sitting propped up puts p[ressure on your bottom .

    Good luck and any questions - however small or daft - just ask .

  • PS I wouldn't worry about your sweet tooth for now .Pre op the emphasis was all on gaining weight ( and I didn't need to ! ) .Surgeon's words were "fill yer boots " .Apparently recovering from surgery uses lots of calories so good to be plumped up .

    Post op I'm dissapointed that I still have v sweet tooth ,didn't loose my hunger sensation ( apolgies to those who may suffer with this ,but I was truly hoping ) and am still overweight /

    Things like sugar and hot drinks do cause dumping but guess what ? I still overindulge !

  • Violetqueen - thank you for your honest and advice I loved it! That's so me the night before I will be worried as hell. I am now going to stock up on some Tena max pads just in case! I did jest last night with my husband the concerns of baring all to them on the operating table- I am on the rather on the larger side up there. He reasured me that they won't be looking at those doing my op!!! I like you love my sweet stuff and I laughed to my friends when I told them that ever time I've been for an appointment at the hospital and they've weighed me my weight has gone up and up . I think because I know I can't have it afterwards I'm eating what the hell I want- well what goes down. I'm on the plump side so know loss will be ok afterwards.

  • Violetqueen - silly question coming your way re: tena- were they they maxi pads or the ones that are pants- I am going to be buy at pack to stick in my hospital bag for the 'just in case' situation.

  • Hi there,

    Reading every ones experiences must be very daunting for you, just as it was for most of us.

    But it really does help to be forewarned.

    On BBC2 there is a program called Hospital and the first one went through the oesephagectomy with Prof Hanna at St Marys London.

    I am 16 months post IL op and you asked about weight loss, I went from ten and a half stone down to a couple of pounds under seven stone. Now after this period I am almost back up to eight stone which is like a major landmark for me, so expect to lose weight and be seriously weak.

    Pillows make most people slide off of the bed, I purchased a metal frame arrangement and along with six or so pillows I sleep well, always on my back which you do get used to.

    Food dumping is the pits, the absolute pits, so you need to be prepared with as much help as you can regarding the children for quite a long time you simply wont be fit enough.

    As to what you can and can't eat, it is like a lottery and you wont find out what disagrees with you until you've eaten it, which is a real annoyance, because you will probably have to lay down and sleep for a couple of hours before it passes over. I have almost got to grips with it now and just to give you an idea, I can't eat any cereals or anything with flour in it or pastry, bread, cake, biscuits, sweet things generally. And sadly BEER sob sob. I can eat savoury things even curry! and most fresh fruit is OK. Taking in enough in calories is my biggest problem and I have to take three different medications before or during eating.

    I know it all sounds massively negative, but on the plus side I am 70 years old I am almost back to reasonable fitness, and I can start doing the things I love again, I can still spend time with my children and grandchildren and I am very much alive. The alternative for me would have been terminal so please take it all on board and it is OK to be frightened everyone is it's a major trauma and you have a long fight ahead of you but the more positive you can remain the quicker you will recover.

    Good Luck with it all and Best wishes

    Richard

  • Hi Richard yes I watched the same program but was mortified at the end to hear that he died of other complications- then the mind started working overtime was it complications through the surgery that caused him to pass away. I love that program I was amazed at this weeks one about the NHS charges for non UK residents - £800 a night for a bed! Crikey. I've said this all along that I'm in complete awe of the staff - I;ve had nothing but great experience of my treatments since my cancer diagnosis. I hope it continues throughout the rest of my journey. Your right the negative mind can creat some terrible effects on me - I;m trying hard to stay upbeat and know there are better times ahead - plus I've been given an opportunity to live, and should I require chemo after surgery then I will deal with that when the time comes. I have loved this thread and being able to speak with real people and real experience of this - I've already gain so much strength out of all your posts and comments.

  • Hi Notsure if you will see my reply Ive just entered but have a look under Alan's post a few replies back.

  • Hi again,

    Ref the program, I don't think it was anything to do with the surgery, it was an underlying undiscovered problem that the poor chap died from.

    I also love the program, it was extra strange for me because Prof Hanna was my surgeon my op was carried out in that theatre and the ICU unit was the one I was in overlooking the canal. Even when the chap was being helped along the corridor by the physiotherapist, I recognised the physio as well.

    I don't mind admitting that it was really chilling and my wife didn't think I should watch it! I'm glad you saw it, forget about the poor chap who died it was unrelated. I'm London, so I had St Marys and I only have praise for all of the staff, they are truly brilliant.

    Where are you having your op?

    Also bear in mind how experienced they have become with this particular operation, I don't deny there will be difficult days ahead for you, but like the rest of us you'll pull through it just takes a while and if your a service wife, you will be used to being quite self sufficient, but Do enlist help because you will need it.

    If at any time in the future I can be of any assistance or just someone to sound off to, let me know. I am ex R.A.F (Long time ago) and I do understand the added difficulties of being in the services

    Once again Good Luck and Best Wishes

    Richard

  • Hi Richard thank you for your lovely message - you hit the nail in the head about being fiercely independent - my home is planned with military precision - only kidding but I am in total control and that will be the hardest thing to let go of- I did joke to hubby and tell him my mouth will still work after it😉

    I'm in Cambs so having my procedure done in Addenbrookes I go in on the 21st Feb. My pre-op is this coming week and the bike fitness test the week after. It's like the weeks are going way to fast for my liking, but I know I will be in good hands throughout.

  • Oh that's a lovely remark from Richard ...

    Scrum ,I don't know if this is helpful but I found it uncomfortable to be unsupported onthe top half but couldn't tolerate the band below the cups of a bra .

    I finally found this

    bravissimo.com/products/nig...

    which ,suprisingly does offer some support even with the back fastening left undone .

    I'm not huge ,38 FF if it's any help as a reference .

    While on the topic of underwear I found after the op that I needed larger knickers ,my abdomen seemed a bit distended for a few weeks .

  • What a great idea re bra vest - I will invest in a few! Yes had to get some big girl panties - I bought that might be the case afterwards.

  • Alan has always been a skinny guy and has always hated trousers that put any pressure on his waist so has tended to wear large underwear, trousers etc. After the op he lived in extra large M and S jogging trousers (with the ankle end a proper trouser shape rather than cuff). These were great for the first 4 months after which he binned them (I think it's quite common for people to want yo bin/burn their post op uniform!).

  • Regarding the programme Hospital . Just watched this - I find it strange that the procedure differed so greatly from mine in 2013 in St Thomas's London .

    Mainly that I was admitted the day before ( perhaps pressure on beds mean they no longer do that ? ) and certainly wasn't having a meal the night before .

    He walked from ICU ? wow ! And must have had a different style of op looking at his neck afterwards .

    So very sad about his outcome ,heartbreaking .

  • Hi Think people have said everything that needs to be said,not a good journey but we all get there and hey ho all here to tell the tale .Stay positive and take baby steps at first and they get bigger I had my op 8 years ,have a few hiccups but I'm here and seeing my grandchildren growing up ,last one was born 3 months after my op,so that gave me even more reason to be positive, like your children will Best advice i was given by a district nurse was look forward,not back and look towards spring and summer and how much better you will be by then Wishing you all the best Love and positive thoughts to you and your family X

  • Thank you for your beautiful words- think that nurse was a very wise woman - how right that is - I'm looking forward to the summer when I can spend quality time with my kids with the op being a distant memory. I got to do this for them and for me- I can't be in better hands of the experts can I. Like most people said - all I can do is what they ask of me and keep going.

  • Hi

    I had pre-op chemo. Whilst the scans (CT & PET) showed no signs of lymph node involvement the histology showed that 7 out of 12 lymph nodes tested were positive, albeit very small, and hence I had post-op chemo too. So my advice is not to rely on scans to exclude lymph node involvement.

    Good luck

    Hilary

  • Hi Hilary they are planning on taking my chest lymph nodes away also and testing - can I ask how long after surgery did you start your post -op chemo or did they wait a while till you had recovered partially from surgery?

  • Hi

    My pre-op chemo was delayed as I was taking immune suppressants for an auto-immune muscle disease, so had to stop these and wait for them to clear. There was also a few weeks between end of chemo and surgery. Post-op chemo was 11 weeks after surgery, and I 've read that 12 weeks is the deadline to be any use. I've also since read that the success rate for chemo is quite low, but you've just got to go belt and braces. I recovered from surgery quite quickly and went back to work after 7 or 8 weeks, the delay was due to lack of facilities here in Wales, it was very distressing as it extended the overall treatment timescale and permanent return to work, and I worried what was happening inside me in the meantime!.

    Reading others talk of the BBC 2 programme Hospital, I watched that in awe, actually seeing the tissue that they took away and how it was tested. Although I am squeamish, I watched the OC surgery on U-tube, as I wanted to know what would happen. There's also some good pieces re diagnosis on U-tube, done by the team in Southampton called The Cancer Marathon, worth a look, it made me realise how little of what the surgeon said i actually heard and took in.

    Despite my phobia of hospitals, needles etc ( I often faint before they've started LOL) I really embraced the surgery, as I knew it was the only possible solution. I even supported another patient who was refusing a gall bladder operation due to fear. They are sooo good in the hospital they will support you through everything and ensure any pain is managed.

    good luck xx

  • Hi Hillary thank you for your reply - it definitely helps to be well informed - tomorrow I am in for my pre-op assessment and I have more questions to ask this time. I am very concerned - naturally about what happens after and if they haven't caught it all and the lymph nodes say something else. I am hoping and praying that this surgery will completely remove my cancer. How have you been since? Yes also worried after re my pain management - I thought I had a high tolerance to it until going through labour!!

  • Hi Scrum - I'd recommend pads as opposed to pants .Pads easier to position in correct place . IYSWIM.

    I think the usual gap between surgery and post op chemo is about 6 weeks .

  • Hi Scrum. I had my operation to on 30th September 2015 to remove tumer "squarmus" I was three weeks away from my 81st Birthday I should add that I was extremely fit. Before my operation my daughter warned me against searching the internet for information because of all the horror stories so I went into the op knowing very little. I was a little unfortunate in that I had two infections after the op which meant I had to return to hospital twice and after each visit I returned home connected to a vac machine to help the wound heal and was daily visited by NHS homecare. My feed tube fell out after about 10 days and they never bothered to replace it. It is important to drink the high calorie drinks they give you they are not pleasant but keep your weight up. Another important thing is when you don't feel like getting out of bed to push yourself to get out and sit in your bedside chair because sitting is much better than lying down also walking on the spot and as you progress walking around the ward. Try not to call for the commode and make the effort to get out too the loo because this is all part of your recovery. About the dumping it doesn't take long to know what causes it with me it's having hot drink on top of eating. I have found that drinking ginger with spoonful of honey excellent. Small meals are necessary after op but I have no trouble in getting through a roast on Sundays. I have adapted to sleeping on a wedge pillow and I take one 30mg lansoprazol tablet 30 minutes before my main meal and a spoonful of gavascon before bed and I do not have any reflux. I don't but proper Gavascon but get the cheaper Asda brand does the same job. If you can get support from Mcmillin nurses then that would be a tremendous help to you they are invaluable. I am back to doing my own decorating and have just laid some paving for my son. My daughter took up running which is what I used to do so she could raise money for cancer research, I don't run any more but I ride behind her on bike. Please don't think I am bragging in anyway about what I do but I just want you to know there is a positive side to this problem and that it's so important too stay that way throughout. While I was in hospital I always made myself think that there were always people worse off they me. If you want you you can always contact me I will let you know my contact although I'm not sure how it's done through this site. I wish you well for the future and try not to worry because that doesn't help in the long run.

  • Wow I take my hat off to you especially being as active as you are at 81 and just getting on with it as such! It sounds like you are doing all the right things for your recovery and I will keep that in mind about doing as much for myself as I can to help me on my recovery. As I mentioned earlier I am a terrible patient - although will listen to the nurses and doctors I will struggling not being able to do as much as I did before - infact what we all take for granted I suppose. I'm nervous about the post op complication especially lung infections or pneumonia which is often spoken about after a procedure like this. Did you do the pre-op and post -op exericises that they give you. That's brilliant news that your daughter is doing something so positive out of all of this and that you are still able to enjoy it with her.

  • Before my op I was riding bike everyday for 10k at first rate always in oxygen debt to stay fit. My consultant said it was a waste of time doing the bike test with what I was already doing. My main exercise after the op was to walk round the living room and then extend it to walking out with walks getting longer every other day. When I said I had an infection it was the wound and not the lungs and that prevented the healing of the wound. I was given a small plastic bottle arrangement that I used on a regular basis. You had to breath out and then inhale through the bottle and this expanded your lungs it was brilliant and you must try and get one sorry can't remember what it was called I will look up my notes I got it from the McMillan nurses it's a must.

  • Believe it or not your children will get you through all that is to come.

    My son was 2 years old when I had the op, twenty five years ago.

    You will be so hell bent on not upsetting them that you will perform miracles of coping and accelerated recovery. But boy will you be knackered!

    In due course they will acclimatize and become your most attentive and sensitive carers and it will dawn on you just how lucky you are. Your partner will feel the same.

  • Gutlesswonder - firstly I absolutely love your name!! That instantly brought a smile to my face. Secondly I am amazed at your story - especially having a major op like this 25 years ago and coping with a two year old. You are so right about not wanting to upset them - everyday I subconciously keep reminding them that daddy will be in charge for a while and that mummy can't do a lot of the things I do at the moment just till I get a bit stronger. I'd rather be knackered and still be here with them - its a small price to pay isn;t it. I think the time away from them whilst in hospital will be the hardest part for me.

  • Hi, I am a 41 year woman and was diagnosed in October, Have completed 3 rounds of ECX chemo, which apart from hair loss and a blood clot in my arm went a lot easier than I thought they would. Am now counting down the days to my surgery on 8th March so reading all the replies to your post have been really, really encouraging. It has answered a lot of queries I have had in my head.

    I am big busted too and the link to the bra top is exactly what I have been looking for as have been worried about going unsupported afterwards due to the scar, so thank you Violetqueen for that.

    I would be good to hear from you after the surgery as having someone in the same boat can sometimes be helpful, If nothing else but to share our experiences.

    I wish you all the luck in the world with the surgery and recovery, I hope we can both get through it and come out the other side with as little complications as possible.

    xxx

  • Hi shady23 the replies have helped me so much in my preparation for the surgery - I'm glad it's helping you and others to hopefully. It makes you realise just how many people actually have to go through this op, but survive and live life to the full afterwards 'cancer free'- I'm looking forward to hearing those words. I wish you all the best for the 8th and hope you make great recovery yourself - fingers crossed that we can sail through this like we've done with everything else before it. I will definitely keep everyone updated once I've had the surgery and home - I realise that progress will be slow and steady - but the tortoise can win the race!! Here's to new beginnings for us both.

  • Hi Scrum. I did reply to your posts some 14 days ago and if you remember I said about using a device to expand the lungs after the op but I didn't know the name of device. Well I looked up my notes and it's called a "Spiroball" and was given to me by the McMillan nurses. The way to use it, you exhale all air in lungs and then connect mouth to device and breath in a disc in device then rises and gives you a reading. You use it before the op to get a reading and then after the op you work to get back to that reading by using it several times a day and it does stop fluid buildup in your lungs, it's an absolute must even if you have to buy it. Good luck.

  • Hi Pompey that would have been ideal before my op - I had my fitness test on Friday and did the breath tests - they think I might be slightly asthmatic! Typical - they were going to possibly give me a nebuliser but seeing as my surgery is Tuesday there is not much time for improvements now! Will now have see how I get on after and maybe purchase one, thank you .

  • Sorry I didn't get back to you sooner. I wish you the best for your op and speedy recovery and remember you will be in good hands these surgeons are very clever people, keep posting.

  • Thinking of you scrumtastic .This is the worst bit ,so be reassured that things will get better .

    I remember all the washing and getting ready for the op - I felt like a sacrificial lamb ! As much as I felt anything ,it was all very surreal .

    You will be amazed at how excellent the staff are . you will be so well looked after .

    And I think you're going to be fine - I got on well .Try not to do too much and be careful coming off painkillers ,step them down .And have stuff for constipation .

    On that glamorous note - this is the worst bit ,soon you'll be out the other end .

    I shall be thinking of you today and tommorrow ,what time is your op ?

    x

  • Hi violetqueen - today esp this evening has been the hardest - I had to take my kids over to my sisters this evening as they are staying over! They are excited about the sleep over but saying goodbye to them was the hardest part so far! My op is early doors tomorrow morning - I have to be in addenbrookes for 7am and need to consume those lovely pre-op drinks before 6am- my last night sleeping on my belly :(

  • I know Cambridge and I'm thinking of you so much . We're all here willing you on .

    love and god bless x x

  • Take one day at a time..that's the best advice I can give. You will need help with the children..it's a difficult but not impossible road. I only had to look after myself and a dog. I had a dog walkers for 5 months as she was a puppy and pulled on my side. Keep in touch let us know how you get on..we are with you. Good luck

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