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A very good week

On Wednesday I enjoyed my 56 FOLFIRI chemotherapy infusion, All went well with the treatment. I had another very good conversation with Deputy Sister Sarah about the chocolates that I gave her from my visit to Bournville in October, Dairy Milk Biscoff was a really winner for her, she also liked the C'Dor dark samples too. At the previous appointment 2 weeks before she spoke about having had another dangerous incident with a patient almost pushing over their IV pole, one of the older versions. Lynda and I made a Christmas donation of £1000 to the Friends of Worthing Hospital to replace 5 more as we did when I past 50 infusions earlier this year. They are most grateful for our generosity.  I had nurse Sandra manage my infusion and she was able to tell me that my latest CEA blood test marker from Monday showed a decrease to 3 back from the 4 it had risen to after my 8 week break from treatment. Pleasing considering I have had only one treatment since restarting and it would seem to in...

More than 4 years of treatment and a year since my heart attack.

 A year ago today I had an appointment for a chemotherapy infusion, but when I had my blood pressure checked I showed that I was suffering a heart attack and was taken to A&E. That event led to having 3 stents inserted and a good recovery.  Today I enjoyed my 62 nd infusion and know how lucky I am. The nurse that undertook the procedure to insert a PICC line 39 months sago told me that I am the patient with the longest time with one the she inserted and it is still working perfectly. Recent one of the IV nurses told me I am their longest attending patient, have had over 100 visits to the 3 clinics I go to, Shoreham & Durrington Health Centres and Bognor Regis War Memorial Hospital. Today was also good as the blood test that show cancerous activity level dropped back to 3 after rising to 4 after my recent 8 week break from treatment. I realise that I am lucky as the consultant said to have genetics that aline with the FOLFIRI treatment and that patients who continue to ...

4 Years Since Diagnosis and 3 Years Since Starting FOLFIRI Chemotherapy

 I was diagnosed with Colon Cancer with a colonoscopy on 8th July 2021 and this was followed by a colon resection on 26th August, 7 weeks later. The surgery was undertaken by M Baig at Worthing Hospital and textbook. No Stoma!!!!  A course of 6 chemotherapy treatments were delivered between November 2021 and January 2022. I February I had my first high temperature event and on phoning the Chemotherapy Helpline and was told to get to the Worthing Hospital  Emergency floor. Pneumonia was eventually diagnosis. I was given a dose of high end introvinous antibiotics and discharged with I end antibiotic tablets. I then had 23 GP appointments over the next 14 weeks. I was told that I had stage 4 colon cancer and secondary tumours in my peritonal cavity. Palliative treatment was offered and it started in September 2023 after a PICC Line was inserted. I have now had 6 Capox treatments and 54 FOLFIRI. The current course is working at the top end of my consultants expecta...

Three and a half years since diagnosis

In July 2021 I had a colonoscopy that revealed I had developed a cancerous tumour in my large intestine. It was in the descending part near to the the sigmoid colon. The cancer was removed during a successful operation at Worthing Hospital in August 2021 with consultant surgeon,  Mr Mirza Baig leading the team. I recovered well after the operation and was discharged after 5 nights.

Deferred Chemotherapy

Today I should have had my 53rd chemotherapy infusion, but my blood test results on Friday showed that the neutrophils were at 1.2 (10*9/L). The minimum level for chemotherapy to go ahead is 1.5.  Its not the first time that that this has happened, but because of the bank holidays including the May Day one on 5th May my next treatment will be on 19th May. This will be a break of nearly 7 weeks. No the longest gap, but certainly comes with a level of concern. The FOLFIRI treatments that I am on works best when it is administered every two weeks.  The next CT scan in a months time will be revealing! IN the mean time the deferment has brought three phone calls. the first to confirm the deferment, the second to cancel the pump disconnect IV clinic appointment and book a PICC line service appointment. The third from the chemotherapy appointment administrator to advise on the rearranged treatment appointment. Chemotherapy Protocol COLORECTAL CANCER FLUOROURACIL, FOLINIC ACID (Modi...

Chemotherapy Cycle 26

Tuesday 16th January 9:45 I arrived at the Amberley unit at Worthing Hospital for my 26th cycle of the FOLFORI chemotherapy treatment. While the process took longer than normal due to a delay in the drugs arriving, but it was easier than usual. As always I am interested in learning useful knowledge. With the clinical educator overseeing the nurse who was at the end of his training I learnt some interesting things. Training takes 5 months, patients can remain on the treatment for a great many cycles. They have had patients who have had 100 plus. The side-effects have been at a much lower lever than normal, wonderful.

Blood Test Results

 The pre-treatment blood test is important to ensure that patients are capable of with standing the toxic effects of the chemotherapy drugs. My neutrophil and Alt levels have cause deferment over the past few months. This weeks blood test results are ok so Monday's infusion will go ahead. That's Monday morning at 9:30 am definitely early! 

Reaction to Omnipaque

Had my quarterly CT Scan at Southlands Hospital's new Community Diagnostic Centre yesterday. The scan required a contrast dye to reveal the cancerous growths and Omnipaque was used. This was the same chemical as the previous scan in August. On this occasion I seemed to have a reaction with heightened feeling of warming, sneezing during the scan, sudden runny nose and irritated eyes. This has not happened during past scans.  Because of the mid-scan sneeze a second scan was done. Unlike previous CT Scans I was allowed to leave the hospital without the usual 15 minute wait to ensure that I did not have any side effect. Odd. Will discuss with my consultant at the next appointment.

Chemotherapy infusion Cycle 21

 My infusion yesterday was managed by Baki the only male nurse on the Amberley unit. I think that he set the rate of the infusion at 60 minutes which I fine too uncomfortable. It causes abdominal cramp and a higher level of nausea. I went in at 13:55 and left the unit at 15:45 more than an hour earlier than normal. The highlight of the appointment was a conversation with dietian Alexa. She has been helping me understand how to deal with my bloating and wind and has introduced me to the FODMAP diet that appears to be proving useful. From the last cycle I identified that bloating occurred from day 4 to day 11. I need to collect and understand the data.

Oncologist consultation

 I have a quarterly appointment with my oncology consultant, Dr David Webb or one of his team every three month. Last week my appointment was with one of his team and two Mcmillan nurses, Sue and Jo. The oncologist asked how Iam coping with the treatment having had 20 chemotherapy infusions. I told her that I continue to tolerate the drugs very well and am managing most of the key side-effects well and continue to search for solutions for the others. She then told me that the recent CT Scan showed that the two growths remain stable, and the Blood CEA marker has recently fallen to 2, the lowest since November 2021. Most pleasing. She then asked if I wished to have a break, which I declined an ordered a further 12 infusions.

CT Scan - 29th August

 The quarterly CT Scan appointment was at Southlands Hospital at 2pm. These procedures require drinking a litre of water/squash during the 30 minutes before the appointment time. Unfortunately, this time the previous patient had issues so my appointment was delayed. I fortunately had no issues with the canular or disclosing die and the scan was completed quickly.  Have to note that my bladder control and capacity was significantly tested, but without any problems.

Cycle 20 completed with the pump removal.

Attended the Shoreham Health Centre IV clinic for an appointment with Nurse Carol to remove the empty balloon pump. that was attached at the end of Wednesdays section at the Amberly Unit. The pump is loaded with around 100 ml of  fluorouracil  (5-FU) and is delivered at around 2.5 ml per hour over 46 hours. The observations reveal high blood pressure, 153/92.

Side Effects

 The chemotherapy treatment comes with many side effects, Worthing Hospital have a list of 178 of which I initially counted 23. Of these 23 I have found 5 are persistent: Nausea that Crystallized Ginger is most effective at minimising along with ginger tea, ginger nut biscuits and ginger cordial. Mouth ulcers that Corsodyl mouthwash manages well. Brittle fingernails that collagen tablets has eased the issue Hair Loss has been reduced by taking Collagen tablets Bloating and flatulence being tacked with the Fodmap diet and the Monash University app.

Chemotherapy Cycle 20

My 20th infusion occurred on August 23rd a week later than expected due to last week's abscess. Blood test was on Mondayand while the Neutrophils were in the normal range at 2.6, the Liver function test ALT was high at 131, up from 89 four weeks previously. This result need Dr Webb, my consultant's approval before the chemotherapy could go ahead. Drugs can only be ordered from the hospital Pharmacy once approval has been given so there was a two-hour delay befor ethe drugs arrived. All went well and I was discharged only around 45 minutes later than expected. Just needed Corsodyl mouthwash in the way of drugs this cycle. The next step on this journey is pump removal on Friday and CT scan on 29th August.

A visit to the Dentist

 On Monday morning I woke up with a swollen left cheek caused by a dental abscess.  The Green Arbor dental practice do not operate on Monday's and after 4 phone calls I had an emergency appointment with Kallod at the Old Mill practice in Church Street. She quickly confirmed the abscess and lanced it to relieve the swelling.  She prescribed 2 antibiotic, Amoxicillin  3 a day for 5 days and Metronidazole  3 a day for 5 days. The prescription was private and cost £19.30 at Lloyds Chemists. Eddie came out to tell me the the  Metronidazole  should not be taken during Chemotherapy treatment. I had already advised the Chemo Helpline at the Amberley Unit earlier and the booked infusion for Wednesday 17th was delayed a week. I advised Green Arbor on Tuesday and had an appointment on Thursday with Monica, my regular dentist. She undertook an examination and took an Xray of the infected tooth. We then discussed treatment and agreed that an extraction would be the...

Cycle seventeen this week

Had a blood test on Monday with PICC line service. Discussed having a chest port to replace the PICC line, this would be installed under general anaesthetic as a day patient. I am now 9 months into the Folori infusion treatment programme having had seventeen cycles and this will continue as part of my palliative treatment. I agreed that the nurse should send in an email indicating that I wish to go ahead with this. The blood test was good as my neutrophil count was 2.0 so the infusion could go ahead. Had my 7th Covid-19 vaccination on Tuesday. Wednesday was a 2 pm appointment at the Amberly Unit for chemotherapy and was managed by nurse Racheal. Fell nauseous with pains in my abdomen. Crystallized ginger and ginger tea helped. With only one infusion during the past eight weeks it is not a surprise to have had some discomfort. The normal side effects are less worrying now. On Friday another appointment at Shoreham Medical Centre to have the pump removed, the 46 hour infusion was not qui...

Another blood test with low neutrophils

My blood test taken at Bognor Regis War memorial Hospital yesterday revealed another low neutrophil level, this time at 1.3. As 1.5 is the protocol level tomorrow's chemotherapy infusion is postponed.  A phone call from Amberley Unit confirmed the delay, Louise will phone with a new appointment and a blood test form will be posted out. 

A visit to my consultant and then holiday

Week commencing 5th June was busy. On Monday there was IAA Judging held at the former London Transport Head Office in Broadway, central London. Wednesday visited Peter H in Sussexdown, and found him to be the most alert and chatty this year. He had new hearing aids that seemed to have made a significant difference. Thursday met Dr Webb for a three monthly appointment. He revealed that the growth remains stable and the CEA blood marker has been at 3 for the two most recent tests. Good news indeed and the treatment continues. Another appointment in September. We did discuss neutrophils with him as well as the side effects. Taking collogen was positively acknowledged, but B12 for neuropathy was questioned. It seems there is not much evidence to support that it improves nerve recovery. After the consultation I had a PICC line flush and redress at the Amberley Unit. Friday, we drove to Frome and onto Exmouth on Saturday.

A CT Scan and Blood test

Four appointments this week, CT scan at Southlands on Tuesday at 9.40 am. A blood test at Shoreham Health Centre at 3.45 pm, their calendar indicated 10.45 am, my card recorded 12.15 pm, rearranged to 3.45 pm. The neutrophil level from the blood test is at 2.9 so my chemotherapy will happen on Friday. 

A second cancelled chemotherapy appointment

My blood test on Wednesday revealed a low neutrophil level at 1.2 Too low for treatment today. Infusion 16 has been delayed by one week until next Friday. This brings a rearrangement of the subsidiary IV appointments including the pre-holiday PICC line service. The delay means that I will have had a 4 week gap between infusions followed by a three week gap. The most recent CEA test result was 4 so a further fall into the normal range!