Hi everyone I'm back !
If you only wish to read " all positive " news please skip by this posting. It contains warts and all .
As you were aware from my last post I was due to get Ivor Lewis surgery on the 12th September following my course of ECX chemotherapy.
My surgery went well on the 12th sept and on the 13th I was sitting out of bed texting friends feeling well pleased with myself.
On the 14th sept .....it all went wrong...badly wrong. I developed a massive leak into one of 3 chest drains. There was a lot of visits from surgeons and team and I was whisked away for emergency surgery (7hours) which did not go so well and resulted in me being put on life support ....the family being called in .being told it was critical and I had potentially a couple of hours left at one point. However what the medical team did not take into consideration was the fact I am a gritty wee determined individual and was not going anywhere fast.
2 weeks in ITU then transferred to HDU.
The consultant spoke with me and while pre op I was given T2N0 diagnosis.....this was all to change
In surgery they found cancer in my stomach so despite CT scan, PET scan and staging laparoscopy...it had been missed. In a way I was glad they had missed it as I would most likely not have been a candidate for surgery. So now I've been told it is likely it will recur and I am not at this stage cancer free as I would have hoped after surgery.
They also had to take a lot more of the stomach than initially planned.
I had my first swallow CT scan around 2 weeks post op. It showed a leak was present so an NJ tube was put down for feeding .nil by mouth
3 weeks post op, 4 weeks post op
5 weeks post op 6 weeks post op I got CT swallow scans each one showed there was still a leak present. Nil by mouth the whole time ! Not even a sip of water as they tried to keep my stomach dry to heal.
Week 6 post op back to theatre again for glue and staples to see if this would help
Week 7 ct swallow still a leak
Back to theatre again for more glue
Vomited up my NJ tube and had to have another CT scan . They found a blood clot on my right lung !
Week 8 post op ...I was allowed to drink sips of water and start soft foods. Nothing would stay down ! Sick all the time .
Back to theatre again general anaesthetic each time ...and botox injected into the sphincter at the base of my new stomach to open it.
Week 9 post op following the most amazing care possible by the staff I was finally allowed home. And here I am . I'm still smiling as I made it and dont believe in moping if I can help it.
I'm still in pain.but gradually getting on top of this
I still have a leaky chest drain site needing dressed on alternate days by the district nurses.
I still struggle to find " my portion " size. Theres a lot of trial and error in this.
I struggle to drink enough. Due to the size of my stomach if I drink before eating I dont have room for food. If I wait I dont have room for fluid. I'm sure this will settle.
I restart another 9 weeks of chemo next Wednesday so I'm sure that will bring it's own challenges.
I hope all of the above was not too graphic but I wanted to show it doesn't always go " to plan"
I'm still very positive....still determined and love life and my family too much to let this get to me. Mentally ....I'm still coming to terms with the enormity of what's happened in the last few months but I'm determined to stay positive
Frances x
Hi Glasgow girl, Frances it's so good to hear from you, I had noticed that you had not posted since your surgery. Now I know why ! You really have been through the wars, and then some but it's great news that you have been so strong and fought through all the problems. And still have a positive attitude, amazing and thank you for sharing your experience with us. Keep on fighting and the eating regime really is trial and error. Anyway keep posting and good luck and kind regards Frank.
Sorry for my late response it’s because I have been covering childcare for my poorly baby granddaughter. Nothing serious, but they won’t have at nursery with a temperature
Wow Frances, you have certainly been through it haven’t you..
Now comes the recovery bit. It’s slow and difficult to find what works for you.
The few things that helped me were
Fitness. Get moving join gentle classes down the gym.
Rest. Napping after a meal helped prevent fatigue and avoid dumping.
Drinking BEFORE eating. Fizzy drinks can be a problem if they are too bubbly. But I find fizzy drinks can go down easier, so I used to dilute Diet Coke and stir it before drinking.
Obviously small portions of food. I felt like I was constantly drinking then eating, waiting a bit before drinking and eating again, all day till 3 hours before bedtime.
And lastly taking probiotic supplements (acidophilus) helped settle my digestion.
You sound as if you have the right attitude to make the best possible recovery. Make the most of the next nine weeks to recharge your mental and physical batteries before the next onslaught.
Counting the days, making every day count.
Brent
Thanks Brent.
I was for some reason avoiding fizzy drinks. I'm not sure if it was something I had read . However, last week I had some diet coke and I had loads of ice in it. It went down so much better than the diluting juice I was having.and I actually now feel I am able to hydrate myself better It just goes to show we need to do what's best for us as individuals and not what we read will be best lol.
I'm game to try anything that has been tried and tested.
Chemo starts again tomorrow and I know it will most likely bring it's own challenges. I'm hoping this time may be a bit easier as last time I could not eat or drink until the 3rd cycle
Thanks again for your advice ......
I'll keep the cola bar open !!
Frances x
Hi john
Can I ask how was it decided dilatation was required? . Is food sticking ? Or is it certain food that doesnt go down?
Or is it the amount of food ?
I'm soooooo jealous you are getting away to tenerife lol.
It's the one thing I miss ...my holidays .. I should be on a cruise just now . I'm hoping mabey February I'll get to tenerife. Hope you both Have a great break
Frances
Welcome back Frances - I had wondered how things went for you - what a brave girl you are !!
Keep positive and keep posting .
Best wishes on your road to recovery
Hi Frances just certain food was sticking mainly meat like steak now I avoid it chicken ok read because of the dough just got back from having it done 2 me time had sedation closed my eyes didn't feel anything it was ok surgeon said shoul not have any problems now hope everything goes well for you and get on the cruise soon u deserve it spk soon
Hi Frances, I hope you don't mind me jumping in. If foods that you could swallow since the surgery start sticking that is usually an indication that the gullet needs to be dilated. It's quite normal due to the healing process. I had mines dilated approximately 8 weeks after surgery, they don't want to risk doing it too soon after surgery in case it causes a leak. You may find that given the problems you have had with the leaking they might want to leave you alone for as long as possible, rather than risk causing more problems. Take care and kind regards Frank.
Hi
I agree !. Despite being almost 11 weeks post op , I'm only 3 weeks into the eating and drinking malarkey.
I need to be more patient lol.
It takes a lot of getting used to really small portions especially for a "foodie" like I was before.
I see the consultant again mid December, at which I imagine we will discuss where I am diet wise.
My plan is to keep a diary of what goes down and what doesn't in advance of this.
I agree though after 5 surgical interventions I'm best left to heal a good while first .
Frances x
Hi Frances, my wife used to say to me that patience was a virtue. I used to reply ah canny eat virtues ah want a slice of toast. Yes I had several issues with the food dumping, early followed about an hour later by the sugar crash ( late dumping). I had lost about 5 stones prior to surgery and 3 years later I have gained it all back. I remember years ago at work someone said " when was the last time you were at a fat man's funeral. Lol keep being positive and you will get there, kind regards Frank.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007