Jean Day, Stockport
My name is Barbara Jean Wyngarden Day. But everyone except medical people have called me Jean all my life. I am a widow, having lost my husband 12 years ago to Non-Hodgkins Lymphoma. I am retired.
My awareness of cancer came from a very circuitous route. At the end of January, I woke up one morning to find my face contorted, my eye wouldn’t shut. I called 999 since I assumed I’d had a stroke. The ambulance people rushed me to the hospital, but quickly I was told that I didn’t have a stroke – but Bell’s Palsy. I was seen by a doctor and put on a 10 day dose of steroids which was the standard treatment.
The steroids gave me great energy. When I stopped them abruptly as I was told to, I very quickly found myself almost able to do nothing. I went out to do some easy gardening, and after a few minutes had to return inside with shortness of breath. I tried to walk a steep hill to my church, and I had to stop every few steps to rest.
I blamed these changes on the abrupt stop of the steroids, so called my GP to see what she thought. She was very helpful – telling me that it was very unlikely that was the case, but she brought me into the surgery to have a blood test and mentioned the words ‘heart failure’, as something to be eliminated. She also wanted me to have a chest x-ray and she took blood to test for anaemia, pernicious anaemia, and other things. The chest x-ray was fine. The blood test came back with me being very anaemic and my iron level being so low that they recommended a transfusion.
The first test to come up was the colonoscopy – which was about two weeks after I had first contacted the GP. I had had two of these previously when I had abdominal pains and had been diagnosed with diverticulitis. So I knew what I was in for, and knew that I should expect much discomfort.
The team who dealt with the test were very obliging, and allowed me gas and air as well as a sedative drug, which they increased four times during the experience.
I did have a good view of my innards and when we had been travelling through a long tunnel of quite normal-looking bowel we suddenly came to an abrupt stop. The doctor took six biopsies of the area. He tried to get his camera (the size of a pen) through the gap, but couldn’t. It looked to me like a garden with lots of green plants with tentacles floating around. I wonder how many others have thought their cancer pretty.
I knew that there was a problem from the fact that he spent so much time in that area taking all sorts of samples, so when I found that I had a massive blockage, which he didn’t say but implied was most likely cancer. By implied I mean that he asked me if I had any relatives with bowel cancer. I do, but not direct relatives, but aunts on each side of my parents.
He drew a picture of the scene and told me the next thing was to wait for the biopsies test, but in the meantime, he scheduled a CT scan.
The scan happened about a week later, and I expected to hear the results within a day or two. But I got a phone message on a Sunday when I was in church, so when I rang back, they said I was to come into the hospital immediately for what appeared to be blood clots on my lungs.
So when my daughter came from her home 50 miles away to take me in, we went and had the usual basic tests. I was told that the scan had identified four areas on the lungs which were of concern. And I was to go on blood thinners immediately. But I said, “I’ve probably got cancer and will need surgery for that. Shouldn’t that be done before I have blood thinners?”
He said that the lung situation took priority, and I was given another scan before I was sent home with some little phials of blood thinner that they told me to inject into my tummy. Thankfully they changed this to an oral dose a few days later.
He showed me something on the paper he was writing on, and my eyes went to a line a few above. It said bowel cancer. So that’s how I got the official word.
A week or so later I had an appointment with the surgeon and a special nurse who would stay with me throughout the experience. They explained that I would probably not need the surgery for a month or so, and in the meantime, they had to check up on something else that the scan had shown up – an unusual object in the right breast. “Do you mean cancer?” But they said they couldn’t tell without a mammogram and scan at the hospital which specialises in breast cancer.
The plan was for me to have keyhole surgery but no dates were set. They also wanted me to have a MRI of my head which had already been suggested as something I should have from the Bell’s Palsy. They doubted that there was cancer in the brain, but always better to check everything out first.
So I had that scan, and it was negative. Then they sent me for an iron infusion which was carried out in two sets – a week apart. I started feeling much worse after the iron infusion, and nearly fainted when I went out to the shops with my daughter.
The night before I was due for the second iron infusion, my abdomen began hurting a bit more – nothing really bad, but more than it had previously. So after consulting with my doctor and 111 service, we cancelled that session and went to A & E instead. Since I had been referred by 111, everything went quick quickly in A & E, and after various blood tests I was seen by a doctor.
I had had a small bowel movement that morning, and as this was the case, he didn’t think I had a blockage. But as the day went on, he asked me, “Do you think you have a blockage?” I said yes. So he sent me for another CT scan and it came back that the bowel was blocked. Things happened quickly after that. I was told to go to the blood section and have a canula fitted. I was put in a gown in a bed with’ nil by mouth’ written above. I was very lucky as the head of surgery and a man with a very good reputation for his success with bowel surgery was on duty, so he set up for the emergency surgery.
I was kind of excited about all this. On the way into the hospital that morning I had said to my daughter, “I wish this could all be over and done with today,” but I wasn’t thinking of dying when I waited to be put under by the anaesthetist. I was looking forward to an adventure.
According to various sources, the doctors found it quite an adventure too. My bowel was near to bursting and if they had waited another hour or so, I would have had a very different prognosis. Having taken my blood thinner that day didn’t help in the surgery either, and my heart did all sorts of awkward things – like stopping for a while. But the next morning when I woke up in the special care section, I found out that I was very lucky indeed to be alive. I felt wonderful. I felt 10 years younger and full of energy. I had a stoma, but I had expected I would, so that didn’t faze me. I had had two blood transfusions during the operation which no doubt were partly why I felt better, and they had removed a huge very aggressive tumour which (we found out after the histology) had grown around a bit of the small intestine too, meaning they had to resect some of that. And they took out 24 lymph nodes which we later found out 16 had cancer and the blood cell walls were involved too.
My hospital stay of 11 days was very pleasant. I even enjoyed the food. I learned to cope with my stoma, and named her Effie, for what she was – effluent. I stayed most of the time in a four-bed ward with at least two nurses on duty, so it was quite a come down when I was allowed to go on the ward where there was one nurse for every nine patients. Many commented on how well I looked and how quickly I was able to get out of bed, walk around, and just generally improve. I had to wait for the 35 staples to come out of my wound before I could leave, and have the stoma nurse say I had learned enough to get by.
During the time I was in the hospital I received a letter telling me to go to another hospital which deals with breast cancer, to see the consultant and have a mammogram. We had that put off for a week, and all the time between I was thinking it all was a waste of time. Surely I couldn’t have two at the same time.
The consultant knew from the first feel – and the mammogram was apparently very obvious - that there was a lump. The radiologist did a scan and took three very painful biopsies, and put in a titanium piece of metal which would come out after surgery.
The next week or so we saw the consultant again who confirmed I had a 44 mm breast cancer, but that for the most part it was very slow growing. She wanted to do the surgery straight away, but I explained that I thought I was requiring six month of chemo for my colon cancer and she decided to give priority to that. But she put me on a prescription of Letrozole – probably for the rest of my life. Breast cancer is fed by estrogen and this drug blocks estrogen uptake.
Eventually my appointment with the surgeon to give me the results of the histology came. His first comment was, “I am so surprised to see you looking so well.” I wondered why he was so surprised, but later was told by someone that having read the histology report, he no doubt knew the seriousness of my situation. He referred me to the oncologist, and said he could explain to me all about chemo and decide if I would be able to cope with it.
The oncologist obviously hadn’t read my notes very thorough. He hadn’t realised that I had a stoma, and that I had active cancer. Both of these things and my age made me unable to take the usual type. And I also was low in the necessary enzyme for coping with getting rid of the chemo. So he put me on a 1/3 dose of 5FU with the thought of increasing it if I can cope with it.
I’ve had two doses so far, with very few bad side effects. I’ve had wonderful care from the unit. So the future is up in the air for me. But in my reading of other’s experiences, I don’t think I have found anyone else on just 5FU like I am, and anybody with 16 lymph nodes with cancer. So I would be interesting to know if anyone else is sharing my experience.
I have contributed to cancer research every month for 10 years or so, and worked at a cancer shop for about a year. Once I am over the chemo and if all is going well, I’m hoping perhaps to do some sort of promotion to benefit the organisation.
