PATRICA JENNING`S BLOG…FOLLOWING THE JOYS AND TRAVAILS OF A BOWEL CANCER PATIENT

The beginning of my story is explored in detail, in the section “MEMBER`S STORIES”, also on this site.
 
The purpose of this Blog, is to follow the progress of my experience with Bowel Cancer for as long as I am able to in the future.
 
The events pick up from last August 2015.

Until this point, I had undergone clear blood tests and CT Scans, for three years exactly, following a diagnosis in July 2009 of Stage 4 Colorectal Cancer.

I underwent in all, five operations including rectal and liver resections, and three courses of
Chemotherapy.
 
In mid - August 2015 I began to feel ill very suddenly. In the first instance, I thought Shingles might be returning, as I had developed them in 2011 and understood that they can return. Shingles can be very painful and affect one side of the body only. A blotchy rash develops into blisters, which causes itchiness and skin sensitivity. A feeling of general unwellness, headaches, and a high temperature may occur.
 
I felt tired and fatigued more than was usual for me. My skin felt sensitive all over. I just didn`t feel “right”! I didn`t feel hungry.

We had arranged to meet an old school friend who was down here in Cornwall, on holiday and we were to meet at a cove-side pub for lunch. We kept the lunch date but I was not feeling my usual buoyant self. When we arrived home in the late afternoon, I went straight to bed, I felt so worn out. I slept and slept.

The next day I saw a GP who was very sympathetic, he examined me and we discussed the possibility of a return of Shingles, I said I`d had developed a headache on the left side of my head and face that night.  Though he wasn`t sure, he issued me with a prescription for a treatment for shingles should they develop through the weekend, it being Friday afternoon then. It is important to get treatment for shingles as early as possible, as this may reduce the severity of the illness.
 
The next day I felt no better but attended a course called “The Expert Patient,” which I had begun a couple of weeks before, on the suggestion and referral of my GP. This is a widely available course, designed to empower and support patients living with chronic symptoms and side effects of various conditions such as diabetes, COPD, cancer, and for pain and fatigue management, depression and anxiety.
 
It was quite a drive away, further down into Cornwall at Newquay, but I was determined to keep the appointment. By this time, I had noticed that my urine was a dark orange colour. 
I arrived home still feeling poorly, and went to our local village hall, in the afternoon, for the Annual Flower and Craft Show, in which I had exhibited a drawing as part of an art competition. By the time I reached home I was completely exhausted and went straight to bed again, and slept and slept.
 
The next morning, when I awoke, a look in the mirror revealed that my skin was a distinct shade of yellow and so were the whites of my eyes. The result of a 111 phone call, was an appointment at our small local hospital to see doctor, who immediately made an appointment at a main hospital for investigation. The diagnosis was Jaundice, after examinations and various blood and urine tests were completed. Over the next few days, I spent time toing and froing to the hospital having an Ultrasound scan and tests which revealed a new cancerous tumour on the bile duct, and two new, small tumours nearby on the liver. Two minute cancers in the lungs, which had been lying dormant for three years, were now growing, plus an extra one alongside, also.

I can`t say I was surprised or shocked. The news came almost as an expected consequence of having a Stage 4 cancer diagnosis, six years prior. I was almost waiting for it to happen. Jaundice`s symptoms are a yellow tinge to the skin and whites of the eyes, and is also evident in the mucous membrane in the mouth and nose. The stools or faeces become a pale in colour and the urine is dark. Itching skin, all over the body, fever, chills and fatigue develop and sleepiness develop.
 
In my case this was what is known as Post Hepatic Obstructive Jaundice, where an obstruction, a gall stone or tumour on the bile duct, prevents the bile juice which contains a product known as ilirubin, being transported out of the body as normal.

The reason why jaundice had developed, was that there was a tumour on the Bile Duct. Bile is made in the liver and transported via the Bile Duct and eventually into the stomach to aid with the breakdown of fatty foods. The gall bladder is a storage vessel for excess Bile Juice produced.
 
The blockage causes blood disorders when a substance called Bilirubin, reaches vast amounts in the blood stream and thence the symptoms become evident to the patient. Bilirubin is the waste by product when the natural regeneration of old red blood cells into new ones, takes place. If left untreated, the patient will die.

So approximately a week later, I was admitted to hospital to have an adaptation to my Bile Duct made, in the form of a plastic temporary drain, which would press open the bile duct and allow the flow of Bile juice and bilirubin, to return to normal.

I was in the hospital for five days and did not receive a prognosis from any member of the medical team there. I only knew that I had a tumour on the bile duct blocking the digestive workings, and I instinctively knew that it was serious.
 

After four days waiting for a procedure whereby I was to have the drain removed and replacement metal stents inserted, as I lay on the hospital trolley outside the theatre, the consultant who was to carry out the procedure, bought the consent form to me and explained that the metal stents, once inserted, could not be removed and that they normally lasted around two years.
 
This proclamation bought the question from my mouth “Is this going to kill me?!!”  The nursing team surrounding my trolley all gasped in horror! Everything fell silent. The consultant

then proposed -“You don`t have to have this procedure carried out today, if it is against your

wishes!” On my reply of “I`ll have to think about this!” as I didn`t feel I had been exposed to the full information I would require for such consent to be given, I was wheeled back to the ward, discharged in the evening, and returned home. The next morning we travelled down to the Lizard in Cornwall, for a planned week`s holiday with the family.

Why are hospital medics sometimes so reluctant to discuss openly, serious prognosis with patients? A couple of weeks later, after having the position explained by my oncologist, I had metal stents to replace the plastic drain at the hospital where I have always been treated for cancer. These are permanent.

Eventually I saw the oncologist again, once the jaundice had subsided. This oncologist, whom I have known right from the beginning of the diagnosis in 2009, and whose word I trust implicitly, said that he was extremely sorry to see me back there, and added plainly but sympathetically, that “This” – would now, kill me.

His face was a picture of contorted pain and compassion as the words flowed from his mouth. I had already determined that myself. I knew the Bile Duct was an essential working part of the human body, and it was quite likely to be “Curtains” because of this new development.
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