My Diary since being diagnosed
Collapsed at home and was taken to Hospital Casualty Department, they diagnosed Gastro - Enteritis and discharged me.
From November 1997 to February 1998 I continued to raise the question of my health with my GP.
Referred back to hospital for further examination, where I under went a Sigmoidoscopy.
17th of March, appointment issued for consultants clinic, advised that they had found pre-cancerous polyps in the colon which they now intended to remove to prevent the formation of any tumor.
I was signed sick from work on the 26/03/1998 and on the 29th admitted to hospital for the operation scheduled for the 30th , during the operation a section of the colon was removed, I was discharged from hospital on the 6th of April 1998.
7th of April, GP confirmed that pre-cancerous polyps had been removed.
21st of May, attended out patients clinic in the expectation of a routine check-up. However I was informed that the biopsy results from the operation showed that the section of colon removed was in fact a malignant tumor (Dukes "C" Carcinoma) and not pre-cancerous as I had been led to believe. I was also informed that purely as a precaution I was required to under go a course of chemotherapy
31st of July, referred to another oncology clinic for treatment, each treatment required attendance at the hospital for one afternoon (Friday) per week.
3rd of August, returned to work while continuing to receive chemotherapy.
Chemo suspended by the hospital
17th of December, attended oncology clinic outpatients, he informed me that he was pleased with my progress and condition, he advised that he was quite happy to stop the chemotherapy as I seemed so well.
17th of January routine ultrasound scan.
11th of May, asked to attend outpatients to see a third doctor, at this appointment I was informed that the scan taken in January had identified anomalies on my Liver and he wanted to carry out a Computer Aided Topography (CAT) Scan of the Liver.
14th of May, CAT Scan
25th of May, results of the CAT Scan showed two tumors in the Liver, doctor informed me that he would be contacting a surgeon with a view to further surgery if applicable. It was only at this point in my treatment that I was informed of the new tumors in my Liver even though the ultrasound had shown the anomalies in January and that my condition is terminal.
29th of May partner involved in car crash, plans for bank Holiday Weekend cancelled.
Second week in June attended clinic, surgeon informed me that he required a Magnetic Imaging Resonance (MRI) Scan in order to make a determination relating to the viability of any further treatment.
2nd of July, MRI Scan taken
5th of August, surgeon informed me that there are two large tumors in the Liver, one of which is in a very difficult position for successful surgery. However he considers an operation as the only viable option and will attempt to remove both if at all possible.
Warned that he may not be able to complete the surgical procedure as the final determination can only be made when the Liver is visible to the team. Failure at this point will result in a life expectancy of less than 18 months. Although I have also been advised that the prognosis relating to the time frame can not be taken as an exact science due to the number of variables that can apply to both my personal condition as well as the aggressiveness of the tumors.
If the surgery is completed successfully it still carries a high incidence of re-occurrence and the likely time frame will be about 3 years. Additional surgery is possible the likelihood of it taking place is at present unknown, the five-year survival rate in such cases is estimated at less than 5%.
During the period January to May 1999 neither my GP nor I had been informed of any change to my condition or that the condition was in fact terminal. Following disclosure of seriousness of the condition my GP instigated a claim to Disability Living Allowance (DLA) under the special rules for terminally ill, this award has now been made, a further claim to Mobility was assessed and subsequently awarded.
23rd of August, Colonoscopy performed.
25th of August, Admitted to Hospital.
26th of August, Laparoscopy carried out before Liver resection. Liver resection performed to remove two tumors, epidural inserted into spine (to administer morphine) after anesthetic given.
2nd Discharged from Hospital.
After effects of epidural: backache, advised by nurse "backache" not unusual after an epidural. Became worse after discharge from the hospital, frozen shoulder (left arm) resulting from surgery. GP prescribed codine and paracetomol tablets, in addition to tamazipan to take at night.
10th of September. Severe pain in right side of chest and back making breathing difficult, doctor attended house and called ambulance (2-30 p.m.) as possible cause diagnosed as Pulmonary Embolism. Second call to Ambulance made at 4-30 p.m. with arrival timed at 4-45 p.m.
Taken to Ward 16 and admitted, course of Warferin commenced.
14th of September. Taken from hospital to Newcastle for VQ scan to confirm if Embolism was in fact the cause of the problem, result of scan showed no trace of blood clot warferin course continue.
16th of September. Informed that as I seemed to be improving and no evidence of blood clot I would be discharged home next day but as a precaution warferin, treatment would continue.
17th of September. doctor signed all papers for discharge, awaiting tablets from hospital pharmacy before able to leave ward. while still on ward advised one other cause could underlie the current problem based on the symptoms identified e.g. a bleed from the liver following the surgery, an ultrasound scan would be required to clarify this. As, if I was bleeding, I could not be discharged and the warferin would have to be stopped. Ultrasound carried out at 2-30 p.m. results identified fluid in abdomen but this was not thought to be the result of a bleed and I was finally discharged at 5-45 p.m.
20th of September. Attended Warferin Clinic where I was advised that the control record book was incorrect, as it did not show what my blood level should be. Book kept by clinic and later posted back to me showing a change in the dosage but still not completed in relation to target level. Backache continued throughout period.
27th of September. GP called out re: back pain, as it now included a loss of sensation in the left leg and some measure of instability when walking, morphine syrup prescribed and GP sent letter to Specialist (Consultant).
29th of September. Telephone call requesting that I attend consultants clinic on the 30th at 3-30 P. M.
30th of September. Attended hospital seen by doctor, when examined he found that my left leg was weak. arranged for an MRI scan to be carried out at 2-30 p.m. the following day. The purpose being to check the spine for evidence of infection, abscess or compression of the nerves.
1st of October. Attended the Hospital for MRI, advised by the Radiographer that MRI could not be carried out due to recent Liver surgery and the inherent risk of injury due to the effects of the MRI on the internal staples. New appointment made for 13 th of October.
Returned home to find message from hospital doctor on answer-phone, I rang and she explained that they wanted me to come back into hospital immediately a request that I refused. She then went into detail regarding their current concerns; e.g. the back problem could be associated with a bleed into the spine from the epidural, blood clot in the spine or nerve damage, further more I was instructed to stop the warferin immediately and that a vitamin K injection was required to counter the effects of the tablets already taken. Doctor again tried to talk me into coming into hospital and I again refused. I also stated that as I had to attend the hospital on Monday the 4th for another ultrasound scan I would be happy to attend the ward at 9-00 a.m.
I rang my GP, I explained what had just happened he in turn rang the hospital to advise him that I would be given a vitamin K tablet to counter-act the warferin. Doctor then rang me and advised that the tablet would be ready at the chemist for immediate collection, my partner collected this prescription and I took the tablet as soon as he returned.
4th of October. Attended ward at 9-30 a.m. doctor authorised an x-ray this was completed at 11-30 a.m. attended ultrasound scan at 1-30 p.m. Doctor requested that I return to the Ward at 2-30 p.m. Arrived back on the ward at 2-30 p.m. Asked to I wait in the day room, at 3-20 doctor came into the day room and told me I could go home as they were arranging for my appointment with consultant to be brought forward. No explanation given for the one hour wait.
7th of October. Attended Hospital, surgeons clinic everything appears fine with the surgery but he would be awaiting the result of the MRI to confirm this.
13th of October. Attended Hospital for MRI. Later in day phone call from Clinical Nurse results of MRI are clear no identified problems.
26th of October. Attended for appointment with consultant, MRI shows no sign of any tumors in the spine or abdomen. Due to continuing problem with the bowel I was prescribed a course of Domperidone tablets to see if they would help to ease the discomfort after eating. Further appointments due later in month.
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