Update - experiene so far.!

[LarryLamb69]

Hi All, Well I am now 7 weeks post my Ivor Lewis surgey in Broomfield (Chelmsford UK) which is a regional center for this type of operation as not done in my home county of Suffolk. Surgery went well , and was out in 7 days..I quite determnned type and was fit prior to my diagnosis of OC. Had 4 lots of FLOT of 2 months , then the surgery itself.

Issues to date ,

1. back pain around the mainly around scar area , and the feeling of "cuts" on my front where they went laproscopic but not at the actual entry points just in and around the area.

2. Decrease of sensation of my right side / chest area - not really an issue - just there.

3, Weight loss as not really adpated yet to new eating regime ,but i think i am finding my new fighting weight anyway.

4. Taste buds are still all over the place , not sure if anything to do with the surgry from nerve issue , or still a fall out from first lot of chemo.

5. Dry cough..annoying as hell , and Dr,s keeping an eye on it , if I talk a lot I start coughing

Go in today for a new PIC line insertion before FLOT start again for same 4 cycles...more weight loss.!!!

Good bits--and there are some..Can already eat anything more or less , bread still not the greatest but i can get it down,,everything else goes fine ..steaks and so on clealr geting used the new "full" feeling which is akin to feeling like I might be sick , lump in the throat type thing , I was fully back at work 3 weeks post surgery (I am office based worker now) so that lifted my mode being with the guys at work.!! sleep well now as i go to bed a bit later to allow for a late evening snack / meal - 21.00 to 21.30 ish with only very minimal issues with reflux only a litle bit sickly in mouth 2 or 3 times.

I can get out and about as well driving for 2 hours or so gives me slight back ache but workabale. No dumping of any kind and I have eaten "sugar" heavy deserts and drunk high dairy milkshakes for weight gain.

So overall really happy with progress , and NHS in particular Broomfield were 100% spot on , surgeon think all clear as can be.Lots to work on yet in particular my weight (I am only 5,4 and 9 and half stone (61 kg) I was just under 11 stone - (69kg) - with first symptoms. If anybody who is at simliar stages to myself and wants to ask bits please just chuck me a line happy to chat on anything at all...all the best everybody!

Larry

[hunsdon]

hi I had my operation t queens hospital Romford 12 years ago I couldn’t fault them at all great doctors great support staff

[petercaron in reply to hunsdon]

Congratulations, sounds like you are doing well. I am 6 1/2 years post surgery.

The scar on the back will feel better over time, but I still find certain chairs still are uncomfortable against the shark bite scar on the back.

I took some gabapetin (Sp?) to help with the nerve pain at the incision sites for a couple of months after the surgery. May have slightly helped

Best of luck on your ongoing recovery.

[Artiquety in reply to petercaron]

Hi Peter, may I ask the size of your scar? I was told that they only take a tiny bit of rib out on your back on the right side, is that correct? So did you have to have more chemo/radio or immunotherapy afterwards? Were you given the all clear?

Thanks in advance

Tracie

[petercaron in reply to Artiquety]

My scar is about 6 inches but they did not remove or break a rib for the surgery

I had 28 radiation treatments and 5 chemo before the surgery. I then waited 1 1/2 months for the surgery. No other radiation or chemo after the surgery.

The release of the stomach was done robotically so only three small incisions on the lower abdomen

The surgeons were pretty confident he got it all I am now 6 1/2 years and still clear

[Artiquety in reply to petercaron]

Thank you for your kind explanation, so how much stomach did they take away? you didn’t have to have any oesophagus taken at all, Peter?

[petercaron in reply to Artiquety]

The removed about 2/3 of my esophagus and only the esophageal sphincter valve on top of my stomach

[Artiquety]

Aww I am so sorry to hear about your diagnosis. Did you have 3/4 oesophagus and 1/3rd stomach taken away? I’m surprised you are driving after two weeks, I would have thought that it would take a good month or two, to get back your stomach muscles? Are you covered under your insurance ok?

[LarryLamb69 in reply to Artiquety]

Cancer is not a DVLA / insurance issue unless neurological issues, as long as can perform emergency stop, stomach not an issue really, just back gets tight and sore if long,ish drive. And yes to the bits whipped out😁!!

[Artiquety in reply to LarryLamb69]

I was concerned about that, hence asking, because when I read in MACMILLAN’s website, they say:”Some insurance policies give specific time limits for not driving after surgery. Contact your insurance company to tell them you have had an operation. Most people are ready to drive about 4 to 6 weeks after their operation.” But hey, if you feel fit and fresh without any heavy medication, that shows a light at the end of my tunnel. And a big congrats and well done you , seriously that is great news. How are you finding the daily drinking and eating habits, ok?

[grandylynda]

You are doing great. It was about 6 months before I drove again and started to get back to a more normal life.

[Icecre]

Hi Larry getting my oesphectomy done Friday 2nd August. Bit nervous but has to be done get this cancer out once and for all i found it hard mentally dealing with the prognosis. I'm 48 and I would be fit and healthy. You are doing really good. I had 6 rounds of flot treatment I tolerated it very good so they gave me 6 instead of 4 post surgery. It's very encouraging on this forum people are really nice and all great positive stories. Thanks Larry

[Julieanne60]

Hi there. Just scrolling through the website and came across your post. I’m nine and a half months post op and doing well. Think we must be on a similar time path. I also live in Suffolk and my care was split between West Suffolk Hospital (chemotherapy) and Addenbrookes (radiotherapy and operation). Good to hear you are doing well. Best wishes, Julie

[tinabrown196]

You nailed it to be honest, didn't get back to work so quickly ......you must secretly be superman in disguise! Fairplay to you ! The only thing I would say is watch the refined sugars naturally sweeten with honey maple syrup or coconut sugar if you can ,this one is a sugar fed cancer which they really don't tell us as they want us to get the calories in be a use of the small new stomach set up .Love the positive attitude

[PopandMo in reply to tinabrown196]

Cancer is NOT sugar fed. All cells in our body utilise what we eat … which is ultimately broken down to its simplest form.. glucose. There’s no evidence to show consuming sugar “feeds” cancer. Nutrients from any source are often required when eating is difficult in our situation. Things like honey etc are no different to other sugars as they too are ultimately broken down into glucose, a contain minimal nutrients.

[tinabrown196 in reply to PopandMo]

Sorry you feel that way. If there is no evidence why is the majority of chemotherapy is given in a solution which is rich in lactose a milk sugar, this is done to increase its ability to kill off the cancer cells because it thrives on sugar,I know this as I am lactose intolerant so my treatment was tailored by my team to my needs. There are some clinics in America that have been deemed controversial because they reduce the sugar intake in patients before treatments so the potency of the chemotherapy is more effective, but sadly messing with the bodies sugar levels had some dire consequences for some patients.To be honest its not just about the refined sugar it's about the additives and preservatives also in jars, tins and processed foods, the levels are at such an unhealthy high, brands are creating a toxic mix, if we owe our bodies anything it should be to try our best to get rid of these 'extras' make our food from scratch and as natural as possible.

[hunsdon]

well done larrylamb69 keep going it’s a hard road but so worth it , I am now 11 years on my hospital was queens Romford they were brilliant , 🤩

[Mick]

Some insurance companies are ready to hit us with higher premiums. For some reason I have been very lucky. I had my op in Feb 2012, our 1st holiday was 6 months later. We have insurance through our bank account, which we py extra for. On contacting them I could still be covered but not if it was cancer related. Fast forward and still covered but now 5 years clear no restrictions. This year we went away, to Canada and Alaska (15 days) they said after this length of time still no problem with cover.