Patient stories
Michele and Bobs’ story
Michele about Bob
It started for us in July 2006 after a fantastic holiday in the Caribbean, my gorgeous husband appeared to be perfectly well apart from indigestion which he had suffered with ever since I have known him, some twenty years. Nothing seemed amiss which is the scary part of all this. We had decided it would be appropriate for him to have another check up after a long time on medication for his indigestion, better safe than sorry never a truer saying, although we had no idea what was to come. To our shock and horror my Husband was diagnosed with oesophageal cancer, we felt numb. The thought of a three month wait while they did a staging process was unimaginable, but time waits for no man and after several scans and lots of stress later we were told it was operable.
It started with chemotherapy in August and September, for the first time ever I saw my Husband being violently ill.
I was broken seeing him like this but he needed my strength to get him through this first stage of the treatment so I never dared to show him my weakness.
I would not allow him to have any contact with people even close family members when he was at his most vulnerable. I was terrified he would catch some sort of bug that his body could not cope with. I was like someone possessed in keeping him safe and well. I even refused to kiss him on the lips just in case, much to his annoyance!
It is amazing how careless people are with hygiene, Coughs and colds, but when you are in this situation you are much more aware of it.
CHEMO as people call it sometimes off the cuff is not something to accept lightly, you do not need any further complications that can be avoided with a little more care. We took his temperature every day and I watched him like a hawk, I was on high alert every second of my life, as he is my life.
I felt as if I was on another planet most of the time I had to keep telling myself that my gorgeous man has Cancer and might die. I found it very difficult to say the word let alone think of the operation that was to follow.
Three long and difficult months after hearing the diagnosis our time had arrived, 25th October 2006, operation day, it’s a very strange feeling because its something you want but at the same time dreading it. We were one of the lucky ones who are offered this option, and we must remember those who aren’t. I keep having to tell myself what’s the alternative.
It feels surreal as my man is still eating well and looking good I have to remind myself that he has got Cancer.
I had made a joke to our fantastic surgeon not to do anything hazardous like riding his bike that could delay this op. By this stage in the proceedings this is the man I am putting every ounce of my faith and trust in, no one else will do. On the evening before the op fate struck, our surgeon had flu and would be unable to perform surgery the next day. However he rearranged it for the following week . We knew this was the right thing to do under the circumstances and I did my best to calm my husband. But that night for the first and only time in my life I thought I was having a heart attack with the build up of stress.
The day my darling husband was taken to surgery we looked at each other in the corridor outside the theatre and both thought this might be the last time we would ever see each other again in this world, the pain in your heart is indescribable. I was empty and numb, I went home and did something very strange I cleaned all my kitchen cupboards from top to bottom thinking all the time about our wonderful life together from the moment we met to………..I had to put all my trust in the wonderful professionals to take care of him, the most precious thing in my life and that’s what I did.
I had prepared myself for seeing my husband after the op. my two strong handsome stepsons who had been with us every step of the way always giving us a positive on the situation had kept telling me to be strong you know what to expect don’t fold - I didn’t.
I saw him first he looked poorly, then the boys, I wasn’t expecting their reaction. They were crying after seeing there lovely dad in intensive care why him? It broke my heart.
I stayed the night in a visitor’s room, nothing could have stopped me, I needed to be close.
We saw each other at five am in the morning it was sheer bliss to speak to him and see him looking a little better. We new this was not going to be plain sailing but you have to stay strong and positive.
He was in hospital for about two weeks and yes there were some complications along the way and we had to deal with them as and when they occurred, and put our trust in the Upper GI Team.
The day he came home my work started, you seem to be fighting every day to keep him going just to do normal tasks that we take for granted but I had already told myself this is what I have to do. And do it I will.
Six months later. Yes he did lose a lot of weight, more than we thought.
Yes he does have some digestive problems but we hope this is temporary.
Yes he is eating really well.
Yes he did go back to work in at the end of January 2007 for three days per week.
Yes he did start playing 18 holes of golf every week in from March 2007.
And yes we will be forever grateful to the professionals in the Upper GI Team at the Countess of Chester Hospital and the OPA.
GUTSY is going to be our support network and we hope it can be yours.
We will support there journey as they have supported ours.
We have joined the lottery of life, but we are in it together, we have had a very difficult and emotional journey, and feel that our bad luck became good, and that is what we focus on to stay positive.
Bob about Bob
8th July 2006 was the day that was to change my life and that of all my family, after a routine check up and endoscope which I had asked for. Dr Ian London, my Gastroenterologist, had found a “small lesion” in my oesophagus; he had taken a biopsy and it had tested positive.
Words cannot describe how I felt when I heard him say that word… Cancer, I was dumbstruck. Like most people when you hear the word cancer the next word you think of is death, I honestly thought at that moment that my life was over. I did not feel ill in any way, I was fit and healthy or at least I thought I was, I had no symptoms at all apart from reflux and indigestion from which I had suffered for many years and for which had been on medication.
That afternoon my wife Michele and I had to tell our family the news, it was the most difficult and sad thing we have ever had to do. Even though we were both in turmoil and extremely scared we decided we had to be positive, at this point we knew nothing about oesophageal cancer.
I was told on Saturday and a CT scan was arranged for the following Monday, then an appointment with the surgeon who was to treat me, Mr David Monk from the Countess of Chester Hospital, was arranged for the next day, Tuesday. Over that weekend Michele and I learnt all we could about this particular form of cancer; what we discovered did not make us feel any better whatsoever.
Prior to our first appointment with Mr Monk, Michele and I had assumed that I would be in hospital having surgery before August. It was at our first appointment we learnt the true facts. We learnt about the staging process and what we had to go through before it could be confirmed that I was suitable for surgery. Mr Monk explained the process and I had all the tests over the next week or so. At our second appointment with Mr Monk we were told that the tests were okay and that he could proceed with the surgery required.
Prior to my treatment starting, Michele and I had decided that we would face the following weeks of treatment and surgery with a positive attitude and remain optimistic; our family was of the same mind and provided us both with amazing strength and support.
My chemotherapy started Monday 7th August which was the first of two sessions over five weeks, the second starting on the 30th August. Chemotherapy is not the most pleasant thing I have experienced but an essential part of the treatment which went well with few complications. During the treatment we continued with our positive attitude and I continued to play Golf between sessions when able.
My date for surgery was set for 19th October, seven weeks after my second session of chemotherapy; a lot more time to think and wait around. We tried to maintain our normal routine and kept on working until ten days before I was due in hospital.
Michele and I decided to take a short holiday in Scotland, so in early October we went to our favorite hotel in Perthshire for four days and both had a wonderful time together. It was a bizarre situation to be in, we were both very happy and very sad at the same time, but spending that time together made us more determined to face our situation and stay one hundred percent positive.
Soon after my diagnosis I became very aware of the effect my illness had on the people closest to me; we are a very close family and we are in contact every day due to the fact we have a business which we all work in. The business is a massive responsibility and takes a lot of time, effort and travelling, so not only did they have to contend with my situation they had to continue to be at hand to deal with the day to day running of the business, and of course Michele had to look after me when I was not at my best. Watching them going through this ordeal was a great source of stress and sadness to me; our two sons Gary and Chris where under a great deal of pressure at work and were constantly travelling up and down the country and dealing with the fact their dad was gravely ill.
I suppose people tend to focus on the patient in this sort of situation but there are many other people, family, friends and colleagues who are badly affected when person takes ill and they all face their own turmoil, usually in silence.
On the 18th October I was admitted into the Countess of Chester ready for my surgery the following day. We arrived at 11.00am and went through the pre-op routine and waited. That evening about 7.30pm Mr Monk came to see us; he had the most dreadful cold and felt awful. He explained that he was not comfortable performing such a complicated procedure whilst feeling that way and was going to cancel for the following day. We where both devastated but fully understood, a new date was set for the 25th October.
At 7.00am on the morning of the 25th Michele, Gary and Chris where allowed on to the ward to see me before I went to theatre. It gave me a lot of strength just seeing them and although I was apprehensive, I was happy it was finally taking place and I was prepared for what was to follow.
Michele was home by 8.00am and the boys went to work. It wasn’t until 6.00pm that evening that Michele received a call from Mr Monk to say that all had gone well; they told me later that it was the worst ten hours of their lives waiting for the call. They came to see me in ITU that evening. I spent three nights in ITU, six nights in HDU, then onto Ward 44. I was allowed home on the 9th November. All went well with a few complications; the good news was all the Lymph nodes removed were tested and were all negative.
The following weeks were difficult at times, I had some problems but we had a great Christmas together. I was back at work in early February for a few days a week and I was back playing golf late February not very well but it was just part of getting my life back together.
It is nearly three years since I was diagnosed and I am doing well, I work three days a week sometimes four if I am allowed (by Michele). Words cannot describe my gratitude for the care, help and expertise received from Dr London who diagnosed me, and Mr Monk and his team for treating me, and their continuing monitoring, and of course my family. My wife, Michele and my sons Gary and Chris, without their love and support I could never have completed this journey.
My life has changed, I have changed. I am not as big as I was, I am not as strong as I was. My general health is probably not as good as it was, but my life is still as full as it was. I continue with my work, my sports and hobbies. I have travelled more, seen more, and enjoyed it more. I am optimistic about our future and we all remain as positive as we started.
After my diagnosis in 2006 we were put in touch with the OPA (Oesophageal Patients Association). Michele spoke to them on several occasions, they were extremely helpful and provided her with good advice and hope that everything would go well. I myself spoke with Richard Martin, the OPA treasurer, who had the same treatment as me some eleven years before. Our conversation lasted for about an hour and was of enormous value to me. He explained that it was no walk in the park, but the fact that he had been through everything I was about to experience and was still here to talk to me eleven years later, filled me with strength and confidence. Our contact with the OPA was invaluable but as they are based in the Midlands it was remote and with no personnel contact.
Early in 2007 we where approached by Rachel Davison, Upper GI nurse from the Countess of Chester Hospital asking if we would be interested in helping set up a support group for the Chester and North Wales region. After our experience with the OPA, we thought it a great Idea and offered our assistance.
At the first meetings we had quite a small turn out, all previous patients and their partners / carers, with the back-up of the clinical team; a total of circa fifteen to twenty people. One thing was blatantly obvious from the very beginning; all the patients where benefiting from the meetings and talking to other patients. I for instance, could speak to patients who had been treated two, three and four years before me, you cannot experience that by going to the out patients clinic every six months.
Our meetings have the great benefit of having the Clinical team present, we always have a Consultant Surgeon, usually two Upper GI nurses, plus a dietician and physiotherapist and Occupational Therapist. This enables our patients to discuss their concerns with people who understand exactly what they are going through. Quite often we hear of patients who struggle to get what they want from their GP practice, some cannot get to see the same GP so miss the continuity of care that is important to cancer patients. It is no fun to sit in front of a GP who doesn’t know your case; how can he read your notes, listen to you, and treat you with a five or six minute appointment.
This is why GUTSY and other support groups are of immense importance. At our last meeting which was probably our eighth or ninth, we had an attendance of around 60 people which included about twenty to twenty-five patients. We regularly have new patients who come along prior to having surgery and the fact that they can meet and talk to people who have been through what they are about to go through, is priceless.
Michele and I recently attended a Macmillan Listening and Responding Skills course. At the meeting there were two oesophageal cancer patients, one stomach cancer patient and six or seven breast cancer patients, along with volunteers. At the beginning of the meeting we had to stand and introduce ourselves, like “My name is Bob McCormack I was diagnosed with oesophageal Cancer in 2006”, etc.
Without exception, all the cancer patients when introducing themselves were overcome with emotion. We all found it stressful, and bearing in mind that two ladies who were diagnosed twelve and sixteen years before, were still very much affected and found it difficult to address. This alone is an indication that support groups like GUTSY, are not just for new patients, they provide on-going care and support from people who understand each other.
Bob McCormack
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