In early May of 2010 I had first notice difficulty in swallowing, this persisted for a few weeks before I made an appointment with my GP who immediately sent me to the local hospital. From there an endoscopy revealed a tumour in the lower oesophagus and after a biopsy it was diagnosed malignant. Staging revealed a T3 N1 M0 and a curative treatment plan was formulated by the oncologist and surgeons to offer chemotherapy followed by surgery.
By the August of 2010 I started my chemotherapy regime, a 3 x 3 week of ECX, this I tolerated quit well most of the time but there were some bad days. Unfortunately by the sixth week I had a reaction by way of an embolism in my right foot, this prompted the oncologist to stop the treatment and go to surgery after a 4 week rest period from the chemotherapy.
On the 8th November I went to theatre from a ivor-lewis procedure . Although I coped well with the operation complication set in a day after surgery, the join did not take and started to leek, we had been told it was due to a poor blood supply to the connection.
The next day I went to theatre again for another operation to repair the leak, this time recovery was a lot harder as I was suffering the effects from the previous day’s surgery. Unfortunately the repair was unsuccessful and within a few days narcosis (dead tissue) set in causing septicaemia (blood poisoning).
A few days after the second operation and still unconsciousness I’m back in theatre for a third operation. This time surgeons needed to remove the effected tissue which included what remained of the oesophagus and about three quarters of my stomach. This procedure was successful but left me with the remainder of my oesophagus coming out of my neck and a much diminished immune system.
Two weeks later I came round from the operations, totally paralysed and unable to speak. The doctors thought I had locked-in syndrome but later diagnosed peripheral neuropathy, when the body’s peripheral nervous system shuts down to allow as much body resources as possible to support the central nerves system (brain, heart & lungs ect). Because I had been (and still was) on a ventilator my vocal cords did not work and the only way of communicating was by blinking. My voice came back six weeks later via some gizmo fitted to my trachea which allowed me to speak (in a fashion) and after another month my voice was back to normal.
It took 108 day’s in ICU battling septicaemia, a long list of other infections and ICU psychosis. I had gone from 16st 7lb to 9st 7lb. The weight loss was mainly due to muscle wastage caused by total inactivity, but movement was coming back and my general health had stabilised enough to be admitted to a general surgical ward.
After a 3 month stay in the surgical ward still fighting infections I’d learned how to stand up and walk (all be it only 50ft in a Zimmer frame) and my weight went up to 11st 4lb. Then they let me home to recover in a more comfortable environment.
11 months after my operation I had a PET scan which showed hot spots in my neck and on my back by the operation scar area but no other areas of involvement (vital organs or lymph node), my surgeon arranged a biopsy and the results showed positive for cancer. The surgeon now doubts if a reconstruction will be possible, which is disappointing. My oncologist labelled this a recurrence and planed a palliative course radiotherapy.
4 months on and a CT scan was performed showing no change, my oncologist now thinks that the cancer my not be a recurrence but the result of un-cleared margins from the operation. He has now asked for a CT scan in 4 months and in the meantime is using a wait and see policy.
Today I take all feed, hydration and meds via a stomach tube (16 hours a day), I weigh 12st 5lb (a weight I’m happy with), and I can now walk about a mile. I am a very lucky man to have such a supportive family, friends, GP, nurses and doctors
Stuart Argon
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Argon
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You have been through the mill haven't you! I believe you have done very well to have recovered thus far. Surgery is not like changing a mechanical bit of the car, and sometimes things do not go as well as the surgeons, and we all, hope. What is always impressive is how the body recovers from such a bashing, and mental attiude does indeed have a bearing on the quality of our recovery.
None of us knows what is in the future for us, but if we can continue to enjoy making what progress we can, then that is a challenge in itself. I quite agree that trying to keep in a positive state of mind is a good thing. We all have down days but if we are a bit better this week than we were last week, it is still progress. But being positive does not mean that you have to be falsely cheerful all the time, because that can be a real pain. It takes a lot of resolution and courage to keep making the effort to recover at times.
These things do put life into a different perspective, and put a strain on all the family. You can tend to protect each other from your fears and troubles ut iof you can face things together, it does share the burden. The state of your recovery tends to become an all encompassing thing in life.
I only had a feeding tube for a couple of months or so, but I suspect that the body can adapt to all sorts of unusual things.
We give you and your family our very best wishes - I think that you have some complcations that very few of us can share.
Dear Stuart, You certainly put me to shame, as sometimes I get get depressed thinking that life is not the same and often my little health niggles get the better of me...and I have a weep. You are marvelous and I would like to thank you for writing your blog. I wish you and your family all the best for the future Stuart, please write again and let us know how you are getting on. Bernadette
Hi Stuart, well done on your progress so far, you have had a long walk to get to where you are now. And I agree a positive attitude is important, but don't do what I did and put on a brave face to protect family and friends, and kept many of my fears to myself. It took a very understanding and caring GP to realise what was happening and referred me to a counsellor which was great as I ranted at him but he also made me realise that people genuinly wanted to know how I was so if I was having a bad day I said so, instead of smiling and saying I was fine.
You sound as if you have a good surgical team and family around you, so keep on being positive and good luck to you in your recovery, and don't forget all your new friends here on OPA, we are all behind you and always here for reassurance and a chat
You really have been through it and we are pleased you are now making progress after such a battle. Things can always go wrong during any op but at least you made it. Well done!
An interesting comment from my surgeon re keyhole and fully open surgery. Apparently there is always more risk of a leak after an operation with keyhole, simply because its more difficult to stitch everything up without leaving a hole. I have a massive scar right across my abdomen but 4 days after the op iIhad a leak test which was positive.
Six months before my major op I had a keyhole 'job' and my wife said I looked far worse after the keyhole than the major op! There are risks keyhole surgery which patients need to consider.
You deserve so much respect for the manner in which you have confronted and dealt with all these obstacles and as you have acknowledged your family etc have shown tremendous support.
In my own journey, the thing that I have noticed is that no two cases ever seem to resemble one another and that one cannot infer that something will take place in a certain way given someone else's experience .
I have also witnessed positive thinking and willpower playing a significant role in the process.
My partner was diagnosed T3/N1/M0 in August of 2011 and had three rounds of chemo followed by surgery in December, the surgery was far more difficult then they at first thought it was going to be with a lot more involvement in both stomach and oesophagus. I had a call from the surgeon the morning after the op to say that of the two samples sent for histology one had come back with clear margins and the other was not and although he had sent a further sample for testing it was his feeling that he did not have clearance and the best thing would be to proceed to the total removal with a bag coming out of his neck, we both needed to think about this and let him know the next day as he needed to move pretty quickly - he did say that if all went wwell and there was no recurrence they would be able to refashion an oesophagus from colon in about six months but if there was recurrence they would do nothing further - talk about decisions ! Nielsen decided he would go ahead with the op and I had and have nothing but admiration for him. Then the next day I got another phone call to say that the third sample had actually come back with clear margins and he now thought it best to leave things as they were - I can honestly say that was probaly one of the the worse twenty four hours of my life. Four months on we have just completed the last of the post surgery chemo sessions and wait to see if it has worked - there were twelve positive nodes so it has some work to do - it is quite a journey we are all on and I wish us all strength and peace and hope on our way.
Operations are sometimes very far from being straightforward aren't they! It does show that the surgeons use the best of their skill and judgement at the time, but they are also guided by the results of samples taken afterwards. I think the decision you made was the right one - and it is always good when you have confidence in the surgeon's advice, but then further tests change the situation!
You can never guarantee that there will never be a recurrence, but you can take comfort from the thought that you have given yourselves the very best chance, and that you have been treated by a very good surgeon.
We wish you all the very best - and look forward to you joining the ranks of quite a lot of people who have had equivalent treatment and are enjoying life many years later.
Stories such as Lyns and Stuarts leave me stunned at what some people have to go through and full of admiration at their courage. It makes my "ordinary" surgery for OC seem blessedly straightforward and simple by comparison. All good wishes and positive "vibes" for the future. I guess we are all changed by what happens to us during these times of surgery and recovery and each day hopefully will bring greater strength emotionally and physically to all of us.
That's some story, I do know what it's like to fight infections for 6 months and then lose my legs, not OC related I hasten to add. My OC op went really well compared to your experiences. It all goes to prove that we are born to live. I really wish I could take some of it off you and share the fight. My thoughts are with you and your family.
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