Living through the experience of Ivor Lewis surgery is an interesting experience. However well informed you may be, and knowing, at least in theory that you will have a cut in the front of your body and then another at the rear under your shoulder blade is not the same as seeing yourself in the mirror when you have your first shower.

The day after I managed to get out of the ICU and into a surgical ward I was told by the nurse in attendance that I would be required to go and have a shower. I looked at my body lying in the bed and thought she was kidding!

I had a catheter into the bladder attached to a bag which held the contents. I had a row of metallic staples holding together those parts of my chest and stomach area that had been cut and another set of staples somewhere behind me holding together the cut that had been made there. I had a tube in my lungs draining the fluid that was accumulating there and this was attached to a container. I had another tube draining the wound cavity into a somewhat formidable looking plastic container. A food tube which enabled me to receive sustenance attached to a food bottle suspended from what looked for all the world like a metallic hat stand and also attached to a pump.

Surely when she said a shower she was kidding! She must really mean having a sponge bath in the bed! Who in their right mind could possibly imagine that one day after a nine hour operation I would be ready to:

1. get up out of bed

2. walk to the bathroom with all of my attachments

3. stand with all of the attachments and soap myself

4. stand and dry off the bits of my body that were available and then walk back to my room in the ward and get back into bed.

Not me, that was certain.

Nevertheless, this is what actually happened. On the first day I was assisted fully by the nursing staff. All my extruding parts being placed on a walking frame and then gingerly being assisted out of the bed told to hang on to the walking frame. We then walked to the showers and when we got to the bathroom I was told to sit in a plastic chair and then came the moment when I had to disrobe and be washed all over by a nurse. The last time I can recall being washed by another human being was when my mother did this task in my early youth.

Still, modesty is one of those things that it is possible to retain in hospital but given my age and the then state of my body I must confess that it was the last thing on my mind. I did not want to offend any of the patients with an exposure or my naked rear end, but as far as the nurses were concerned, I figured what they heck, they cope with all sorts of bodies so mine would not be an exception.

The next day I was only assisted to wash, and the day thereafter I was observed and then the following day I was expected to simply get on with it on my own.

It is not possible to explain to those who have not been in hospital for a major operation what a horror it is to view one's own body with all of the medical paraphernalia sticking out of various parts. The feeling that it will be impossible ever to be 'normal' again is simply overwhelming. As the days pass it is possible to get used to one's new appendages and indeed to start to marvel at the various coloured fluids that emerge. It is also possible to get used to having a catheter.

Friends and relatives can be either a pleasant or a really awful experience at a time like this. Some friends offer what they think are sagacious comments and advice based on their experiences. Some of this advice is most welcome, but there is also advice which is WRONG!

One friend, who shall remain nameless in this context, provided 'advice' based on his father's experience with a bypass operation. Among the gems he passed on was that when the catheter was to be removed it would feel as if one was passing razor blades. How encouraging! In the time between his information and the removal of the catheter I had been gripped by fear of the event and wondered how I would be able to tolerate the pain. Not something that you really want to do immediately after major surgery. As it transpired it was a painless experience and I have to confess that it was with some feeling of glee not to mention relief that I reported this to my friend. 

Some well meaning people also call rather frequently and do not realise that the carer in this situation is tired both physically and emotionally exhausted from having to attend the hospital several times a day with the attached travel time, watch a loved one suffering from pain and in a bad way physically and then having to make some effort at living one's own life at the same time. It must be exhausting. I know that on one occasion my carer commented that a friend had been calling at least ten times a day to ask how I was. I asked to be able to use the phone and told this friend that while I had heaps of positive feelings for him his numerous phone calls, rather than being supportive was in fact positively annoying and disruptive.  I then explained why. He took the 'hint' and called about once a week thereafter, minimising the impact on my carer. We also found that by sending out a weekly bulletin to friends, work colleagues and relatives we could keep them informed and at the same time minimise the negative impacts of their wanting to be supportive.

When help is needed it can be asked for if offered.

It is those friends who not only offer assistance but when asked, actually provide it, that will remain in our hearts for ever. If these people will require something when they are in need it will be provided by us to the best of our ability.

There are also people who provide unexpected assistance. For example when my partner told people in our weekly newsletter that I was feeling the cold on my denuded scalp - one colleague came forward with a bear beanie. This was a beanie with eyes ears, nose and mouth and when pulled over the head enables me to be very bear like. This was an accompaniment to the teddy bear that was presented to me by work colleagues. This was at a time when I was required to hug something to assist with coughing to try and avoid getting pneumonia - immediately after the surgery. Not only was this present huggable, but it also will provide a means by which I can create a new reality at work. By placing the bear in my chair, when someone comes to discuss something that I do not wish to get involved with - I can always point to the bear and say something like: 'tell him he can bear it!'

The most delightful interaction which has been made possible by the Internet has been email. By sending out our newsletter every Wednesday people have at least two days to read the information and to provide some commentary. The volume of our emails has increased exponentially. I am amazed by the number of people who have written. If they had written only in the first week or so I would have imagined that it was out of politeness and collegiate solidarity. The fact that they have continued to write for over six months is an indication that they actually care whether I live or die.

The discovery of how many people care about you is a really worthwhile event. It means that there is a possibility to develop the friendships in the time one has left. I must confess that people that I had thought of as work colleagues have become friends in this period of trial and tribulation. That is one of the most positive outcomes of the having this disease.