Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Post oesophagectomy

Cheeky scouser
Posted by

Cheekyscouser

Hi to anyone affected by oesophageal cancer. I was diagnosed on 2nd May this year following an endoscope as I was having difficulty swallowing certain types of food especially bread. All I can say after receiving my results of 4cm tumour in lower oesophagus and also in  1 lymph node. My life felt as if everything had came crushing down and I felt totally devastated and out of control. To say everything over the following few weeks was a total whirlwind is an understatement. One scan after another CT scan PET SCAN  Laparoscopy various other tests combined attending three different hospitals just wore me out to say the least. 

Following all this 24th June I started my first cycle of flot chemo with a further 3  to follow over a 6 week period. I had a tough time with the chemo suffering from nausea, dry mouth, dizzy spells, and extreme fatigue. Following my 1st cycle I felt that bad I told my husband I wasn't having anymore. But these side affects gradually settled which effectively spurred me on to complete the course. If I can give any advice to anyone that feels the same way on there journey stick with it and it is 1 big box ticked. 

Following my lovely experience with flot I was scheduled for 16th September for Ivor Lewis oesophagectomy to admit I was really scared would be an understatement but I remember feeling an overpowering strength that came over me when I point blank asked my surgeon did I have an option to which the answer was no.

From that day on I grabbed everything by the seat of its pants and ran with it. I wasn't prepared to let it beat me and I genuinely feel that fight and positive attitude got me through what was ahead of me with the support of my husband and my son who were my rock and support from family members and friends helped me through my bad days. The day of the operation my husband and son came with me for support they both seemed more nervous than I did I remember.

Anyone who is to have this procedure obviously will know it is a major operation. I was advised to have an epidural which I have to say was a godsend following the operation and would definitely recommend it. Yes the next couple of days you are under close watch in high dependency unit  and 1  thing is for sure your linked to every tube and drips that are possible which is a bit daunting but when your transferred to the ward they are gradually removed over a few days.  Normal stay in hospital is 10_14 days   I was discharged on day 8 which I was really pleased with but as I said before stay strong and positive it really helps.

So here I am  12th October looking back and all done. 2 big boxes ticked still on soft diet for now which is adapted as time goes on. The recovery is a slow process so I believe but can be done. All results from pathologist was great news no sign of it spreading so all in all was worth everything I have been through. 

Next step is second course of flot oh! Happy Days 

but finally that is the last box ticked and put to bed.

I could not finish without showing my utmost gratitude and appreciation for the whole team of professionals that I met along the way they truly have given me my life back which I am eternally grateful for. They made me feel special from day 1 which continued right through my journey and gave me the belief and confidence that I could beat this which I am very glad that I have. 

Yes you will have bad days allow yourself that and don't knock yourself its all part of your journey. Just remember to pick yourself up grab it by the seat of its pants and run with it and you will see the rewards.

Good luck and sending lots of positive thoughts to  anyone who finds themselves in the same position You can do it.

Hope this helps

Cheekyscouser
Anon613
Posted by

Hi ,

You must be strong to be discharged in 8 days! Well done!

I was successfully treated last year and am now in remission. But a word of warning; I found the second cycle of FLOT (post surgery) the hardest part. Just be mentally strong and stubborn (well this worked for me). I had to inject myself most days during my second cycle with anti-neutraphenic drugs. This allowed me to complete my second cycle. 60% of patients fail to complete FLOT treatment. 

Wishing you a speedy and full recovery.

Anon613
oyita
Posted by

Dear Cheekyscouser,

I would like to congratulate you on your surgery and recovery process. I am quite impressed how far you have come, and yeyyy for getting discharged within 8  days. 

Similar to your case my husband was diagnosed mid May this year and completed 7 cycles of FLOT pre op, and got his surgery on September 17th where they removed all his stomach and almost half of esophagus. He was in ICU for 5 days and another week in the general ward. First days were quite crazy and tough, but now he is recovering quite well despite what he has been through. 

Although he is able to eat somethings at this point, i cannot imagine him having more rounds of FLOT post op. I wish you the best of luck and courage for the next FLOT journey. 

May I ask about the extent of your surgery? and also how are you dealing with the whole new eating system and fatigue post op?

Warms regards,

Oyita

BrentS
Posted by

What a wonderful, inspirational story of the trials, tribulations, ups and downs of this journey.

I think you are so correct: positivity really helps and speeds recovery.

Keep posting, we want to hear more of your journey as time goes on.

Counting the days, making every day count.

Brent

Silverfox65
Posted by

Truly Inspirational ' Cheeky Scouser' - a positive mind and attitude can make such a difference for some.

Best wishes on your next treatments - stay strong . stay positive 

Best Wishes 

Pete

Cheeky scouser
Posted by

Hi Anon613 

Well done you! that's  brilliant news to hear that you are in remission keep it up and stay strong.

I must admit being discharged so early was a shock but brilliant news to hear I don't think It would have been possible if I didn't have such a great team of professionals taking care of me. I take your advice on how the next phase of FLOT will develop my first experience wasn't too good. I'm just hoping the nausea will be controlled this time. Let's hope I'm not one of the 60%  fingers crossed all I can say is I will give it a good go (because trust me I can be stubborn) 

Thank you for your advice and I promise to stay strong

Cheekyscouser

Cheekyscouser
Cheeky scouser
Posted by

Thank Silverfox65

I agree positive attitude really helps when faced with something like this and I will be honest there were plenty of times when I doubted myself and could of just crumbled but all I can say is I had this strong feeling of fight and not let it win attitude that I also questioned many times because I didn't know what was giving me the strength to stay strong. 

I am so glad now that I believed in myself and allowed that fight and positive attitude to get me through it.

Still got a way to go yet with 2nd cycle of FLOT in couple of weeks but hopefully this is my last hurdle and I will be strong and positive it's worked up to now

Thank you

Cheekyscouser

Cheekyscouser
Johnyboy1957
Posted by

Hi did u have it done in fazakerley I had mine 25/7 and was in for 8 Days fine great now eating ok just odd bits get stuck small price to pay they were all brilliant in hospital and the surgeon great glad it's going well for u

John

Keep the hope
Sue71
Posted by

Hi Cheekyscouser

My dad has just received the exact same diagnosis as you in his first MDT meeting today and they have suggested the same course of treatment. Reading your story has given me so much hope!!

Wishing you all the very best

Sue71

Johnyboy1957
Posted by

Hi Sue had all the treatment chemotherapy and radiotherapy then op 15 days later was told all clear surgeon said very very small chance it may come back but very unlikely had my op25/7 and all looking good

John

Keep the hope
Anon613
Posted by

Hi ,

Hope you a recovering well from surgery? 

I just thought I'd share some of my FLOT experiences with you. FLOT cured me, but made me feel very ill. One of the side effects I had was nausea, but I discovered that when I cut out meat and fish (I went vegetarian) I felt sick but wasn't sick. I don't know if this worked for anyone else? 

As for getting over surgery, I kept topped up with lots of pain killers and never let the pain get to me. This gave me constipation due to the morphine which I managed with Lactulose more by the cup full (50cc ++) rather than the recommeded dose. 

I think we all have a unique journey and have to find what works for out own bodies? 

Keep strong and positive!

Anon613
Cheeky scouser
Posted by

Hi John 

My op was in the Royal 16/9 same as you could not fault anyone they were all fantastic. The surgeon and upper Gi nurse were very supportive.. Just amazing.

Brilliant you were out in 8 days also you must have behaved.

Glad your eating well I'm still at the stage of everything soft (cant wait to get stuck into a roast dinner)  

Did you have Flot if so how was your second course. I have heard that it's harder than the 1st course  would be interested how you got on 

Keep going and stay positive 

Cheekyscouser

Cheekyscouser
Cheeky scouser
Posted by

Hi thanx for your info about FLOT not a nice thing is it  I was the same as you on my first course of 4 cycles the nausea was nasty and had no energy at all. Had my anti-sick tabs changed about 4 times but hopefully all will be sorted for my next course which could be in 2/3 weeks.

But Its got to be done I have come this far and been through the worst so bring it on. 

Best wishes

Cheeky scouser 

Cheekyscouser
Cheeky scouser
Posted by

Hi Sue sorry to hear about your dad but I'm sure he will be fine. You will find it will be a bit of a whirlwind at first with tests and scans which can be daunting but it's all part of the process.

Just tell dad to stay strong and positive and he will do it.

Good luck 

Cheeky scouser 

Cheekyscouser
Johnyboy1957
Posted by

Hi never had any after surgery they said I was 100% cancer free so not needed hope it goes well for u

John

Keep the hope