Newbie :) 7 weeks post Ivor Lewis surgery

[Cavalier3]

Hello all, firstly I just want to say how good it is to be here and thank you all for sharing your journeys. I’ve spent some time reading past posts that have helped me a lot.

I was diagnosed with Stage 2 N0M0in November 2 days before my 51st birthday. I had chemoradiotherapy for 5 weeks that went well and IL surgery 7 weeks ago. I was discharged from hospital 7 days after surgery. I struggled with pain at first, the epidural didn’t work on my right side so I was is considerable discomfort. My recovery is going well though now, my husband has been an amazing support and looked after me well. I eat little and often and up to now have had no problems with any food. I do get reflux at night sometimes because I slide down from my sitting position. I’m walking 2 miles most days. If I feel a little fatigue I have a rest day. My only problem is a cough and tightness in my chest. I feel like I need to take a deep breath but when I do I cough. Is this normal? Thanks for reading and it’s good to have somewhere to come and ask people who understand what I’ve been through.

[ccfc]

Hi Cavalier3, It sounds like you are doing really well for the stage you are at. I think a lot of people on here will relate to the cough problem and even now, eight and a half years on I still struggle to take a full intake of breath. Keep doing what you are doing.

Best Wishes, James.

[Cavalier3 in reply to ccfc]

Hi James, thank you for replying. It really helps to know it’s normal. I’m sure I’m not alone in thinking something is wrong with the smallest problem. One thing I can stop worrying about.

Take care and thank you, Sue

[Molly14]

Hi there - so pleased your recovery is going well - it’s one of these one day at a time steps - walking is great - some people do have a cough for a while - I have to sleep pretty upright or I will cough all night with the slightest slip down - I find the sofa a great place to get a good sleep as the support is better - also I take Gaviscon advance at bedtime - I was 48 when diagnosed - biggest shock of my life - all the very best with your recovery x

[Cavalier3 in reply to Molly14]

Hi Molly, thank you I feel like I’m doing well but I was getting worried about this cough and breathing. It’s a relief to know it’s a normal part of recovery. It was a massive shock for me too. I just got heartburn after I suddenly lost one of my dogs. My GP sent me for an endoscopy due to family history. It was all overwhelming and surreal but then I tried to focus on how lucky I was to have such an early diagnosis and treatment that could cure me. I’ve bought a Queen Rose pregnancy pillow that has really helped me. I use extra pillows to prop me up but don’t slide as much and it supports my ribs and back.

Take care Molly and thank you. Sue

[Molly14 in reply to Cavalier3]

Hi sue - I’ve just looked at that pregnancy pillow - I’ve never had kids so never thought about that ! All our kids have 4 legs 🤗🐾 🦄 - think I’ll order one - looks good - I’ve tried every other pillow under the sun. It’s wonderful that you had an early diagnosis and such good treatment - take it day at a time - feel free to ask any questions 😊xx

[Cavalier3 in reply to Molly14]

Hi Molly, me too! Only furry kids for me 😃 I did have 3 dogs it was losing my eldest boy Frank that gave me heartburn that wouldn’t go away and I rang the GP.. I was heartbroken, he was only just 8. I’m sure you will love the pillow, I use the body parts to support my ribs and back and a couple of extra pillows to prop me up and I sleep like a baby thank you for all your help Molly. Xxx

[bfg1]

Hi Cavalier3. It looks like I'm a week ahead of you - diagnosis back in October, Chemo during December and then the IL surgery 8 weeks ago. I started sitting upright in bed and also got the reflux at night until, like Molly14, someone suggested the Gaviscon at night-time which helps. I've also got one of the wedge pillows - which helps me feel that I'm getting towards sleeping normal - but also slip down periodically. I too am walking about 2 miles a day - and I do get the cough and chest tightness. Like you say - it's really odd, take a deep breath and just to the point of completing it - a cough is triggered. I did speak to my consultant about it in the follow up sessions, and his view was that this is all part of the healing process and that once upon a time you would spend about 4 weeks in hospital post an IL (it's been around since the 50's apparently). And great news on the food! I had my first steak sandwich yesterday (apologies if you are a non-meat eater) and will try a pizza next weekend.

[Cavalier3 in reply to bfg1]

Hi bfg, ah it’s great to talk to you. I’m 8 weeks on Wednesday. I had surgery on March 3rd. Yes that’s exactly what it feels like, it started and became noticeable the more active I became. It sounds like you’re doing really great too, that’s so good to hear. I’m a meat eater too.. I managed a roast dinner about 3 weeks ago, we had our first curry at the weekend too. As long as I stick to little and often I’ve been good with everything. I was going to buy a wedge pillow but bought a Queen Rose pregnancy pillow and it’s been great. It supports my ribs and back too.

Keep doing so well, take care. Sue

[catlover50]

Hi Cavalier 3You do seem to be doing very well. The cough is normal and the shortness of breath. You were probably given breathing exercises to do when you were in hospital. I was given a 3-Ball Deep Breathing Exerciser to use. It is worth keeping up with any exercises you were given. I am 3 years post IL and am generally in good health now but still do get a bit puffed when I exert myself. Keep up the exercise but DO rest when your body tells you to do. I took afternoon sleeps for many months after my op - that worked for me and I felt better for it.

This is a great forum for reassurance and advice and I am glad you found it. Wishing you a good recovery.

[Cavalier3 in reply to catlover50]

Hi Catlover, thank you so much for your reply and reassurance. Yes this started or became noticeable the more active I got. I think that’s what worried me. It’s so good to know it’s normal. I do my breathing exercises every day, they were so hard to do at first and a real measure of progress. This group is great. Nothing is as good as advice and understanding from experience.

Take care. Sue

[Cavalier3]

Hi bfg, ah it’s great to talk to you. I’m 8 weeks on Wednesday. I had surgery on March 3rd. Yes that’s exactly what it feels like, it started and became noticeable the more active I became. It sounds like you’re doing really great too, that’s so good to hear. I’m a meat eater too.. I managed a roast dinner about 3 weeks ago, we had our first curry at the weekend too. As long as I stick to little and often I’ve been good with everything. I was going to buy a wedge pillow but bought a Queen Rose pregnancy pillow and it’s been great. It supports my ribs and back too.

Keep doing so well, take care. Sue

[Kentishred]

HiYou sound as if you are making a splendid recovery I'm 14 months post IL and I still get the occasional cough when I take a deep breath I eat little and often I have coeliac disease as well so that made things a little difficult to start with but I think I ajusted OK.

Keep doing what your doing and remember that the members on this site have so many experiences that's its a great resource though always check with your ipper GI team if there is any thing serious that worries you.

Good luck

[Cavalier3 in reply to Kentishred]

Hi Kentishred, thank you for taking the time to reply. Yes it’s the deep breath that triggers the cough. It’s so reassuring that it’s nothing to worry about. I have a great Upper GI Team, the care I’ve had from the NHS has been amazing. My nurse encouraged me to join this forum, she said as you have that talking to others in my shoes is so valuable and can really help recovery. I have coeliac in my family too so I know how hard that can be to manage. It sounds like you are doing well though.

Take care. Sue

[Janashlin]

Sound like you are having a brilliant recovery. I am a little over two years on and still struggle with eating and certainly have the deep breath cough.

I had major complications so it’s nice to hear about when things do go well for people. All the best.

[sallym]

What can I add to this, except to say that side effects come and go , eventually you get used to this new life. It has been unbelievable that I have been on this journey for 27yrs since my operation, so travel with hope and wishing you well sally

[Cavalier3 in reply to sallym]

Hi Sally, wow 27 years... You’ve had some time to get used to this new life and your words will inspire me to travel with hope. I had a rough day yesterday but I think I’ve just not been eating regular enough. Back on track today and feel much better. Take care and thank you. Sue x

[grandylynda]

You seem to be doing really well. Hope it continues for you.

[Cavalier3 in reply to grandylynda]

Thank you Grandylynda

[Notknowmuch]

Hi Cavalier3, sounds like you are recovering very well. Those experiences you are having seemed similar with my husband's (61 yrs young) recovery journey. He’ll be 1 yr post IL on 2/6/2021.

To be walking daily is great for your total wellbeing (physical and mental).

Best is that you have found this forum which has so many patients and carers freely sharing their journeys and what works for them.

Be brave, stay strong and all the very best for your continual recovery.

[Cavalier3 in reply to Notknowmuch]

Thank you and you’re absolutely right.. this group and the sharing of experience and personal journeys is amazing. Thank you for your lovely words and I hope your husband is doing great